Health Overview and Scrutiny Committee
Committee Room 1, Wednesday, 05 10:00 County Hall, November 2014 Chelmsford, Essex PLEASE NOTE THERE WILL BE A PRIVATE PRE-MEETING FOR ALL HOSC MEMBERS COMMENCING AT 9:30 IN COMMITTEE ROOM 1
Quorum: 4
Membership: Councillor J Reeves Chairman Councillor D Blackwell Councillor K Bobbin Councillor P Channer Councillor M Fisher Vice Chairman Councillor R Gadsby Councillor K Gibbs Councillor D Harris Councillor R Howard Councillor S Lissimore Councillor A Naylor Councillor A Wood Vice Chairman
Co-opted Non-voting members: Braintree District Councillor J Beavis Castle Point District Councillor W Dick Chelmsford City Councillor M Sismey Uttlesford District Councillor V Ranger
For information about the meeting please ask for: Graham Hughes, Scrutiny Officer Fiona Lancaster, Committee Officer Telephone: 033301 34573 Email: [email protected] www.essex.gov.uk/scrutiny
Page 1 of 230 Page 2 of 230 Essex County Council and Committees Information
All Council and Committee Meetings are held in public unless the business is exempt in accordance with the requirements of the Local Government Act 1972.
Most meetings are held at County Hall, Chelmsford, CM1 1LX. A map and directions to County Hall can be found at the following address on the Council’s website: http://www.essex.gov.uk/Your-Council/Local-Government-Essex/Pages/Visit-County- Hall.aspx
There is ramped access to the building for wheelchair users and people with mobility disabilities.
The Council Chamber and Committee Rooms are accessible by lift and are located on the first and second floors of County Hall.
If you have a need for documents in the following formats, large print, Braille, on disk or in alternative languages and easy read please contact the Committee Officer or Scrutiny Officer before the meeting takes place. If you have specific access requirements such as access to induction loops, a signer, level access or information in Braille please inform the Committee Officer or Scrutiny Officer before the meeting takes place. For any further information contact the Committee Officer or Scrutiny Officer.
Induction loop facilities are available in most Meeting Rooms. Specialist head sets are available from Duke Street and E Block Receptions.
The agenda is also available on the Essex County Council website, www.essex.gov.uk From the Home Page, click on ‘Your Council’, then on ‘Meetings and Agendas’. Finally, select the relevant committee from the calendar of meetings.
Please note that an audio recording may be made of the meeting – at the start of the meeting the Chairman will confirm if all or part of the meeting is being recorded.
Page 3 of 230 Part 1 (During consideration of these items the meeting is likely to be open to the press and public)
Pages
1 Apologies and Substitution Notices The Committee Officer to report receipt (if any)
2 Declarations of Interest To note any declarations of interest to be made by Members
3 Minutes 5 - 10 To approve the draft minutes of the meeting held on 8 October 2014 (attached).
4 Questions from the Public A period of up to 15 minutes will be allowed for members of the public to ask questions or make representations on any item on the agenda for this meeting.
On arrival, and before the start of the meeting, please register with the Committee Officer.
5 East of England Ambulance Service NHS Trust 11 - 30 To consider the update report (HOSC/44/14) and accompanying appendices (attached).
6 Healthwatch Essex - cancer services 31 - 210 To consider the report (HOSC/45/14) and accompanying appendices (attached).
7 General Update 211 - 216 To consider the report (HOSC/46/14).
8 Work Programme and Tracker 217 - 228 To consider the report (HOSC/47/14).
9 Date of Next Meeting To note that the next meeting will be held at 10:00 on Wednesday 10 December 2014, in Committee Room 1, County Hall.
10 Urgent Business To consider any matter which in the opinion of the Chairman should be considered in public by reason of special circumstances (to be specified) as a matter of urgency.
Page 4 of 230 Exempt Items (During consideration of these items the meeting is not likely to be open to the press and public)
To consider whether the press and public should be excluded from the meeting during consideration of an agenda item on the grounds that it involves the likely disclosure of exempt information as specified in Part I of Schedule 12A of the Local Government Act 1972 or it being confidential for the purposes of Section 100A(2) of that Act.
In each case, Members are asked to decide whether, in all the circumstances, the public interest in maintaining the exemption (and discussing the matter in private) outweighs the public interest in disclosing the information.
11 Urgent Exempt Business To consider in private any other matter which in the opinion of the Chairman should be considered by reason of special circumstances (to be specified) as a matter of urgency.
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Page 6 of 230 8 October 2014 Minutes 1
MINUTES OF A MEETING OF THE HEALTH/NHS OVERVIEW AND SCRUTINY COMMITTEE HELD ON WEDNESDAY 8 OCTOBER 2014 AT 10:00 AT COUNTY HALL, CHELMSFORD
County Councillors present:
J Reeves (Chairman) K Gibbs D Blackwell D Harris K Bobbin R Howard P Channer S Lissimore M Fisher (Vice-Chairman) A Wood (Vice-Chairman)
Borough/District Councillors present: W Dick (Castle Point District Councillor) V Ranger (Uttlesford District Councillor) Also in attendance were:
County Councillor Anne Brown (Cabinet Member for Adults Social Care, Public Health & Wellbeing) County Councillor Terry Cutmore (Deputy Cabinet Member) Chelmsford City Councillor Jean Murray David Sollis (Healthwatch observer)
The following Officers were present in support throughout the meeting:
Alex Polak - Scrutiny and Corporate Governance Manager Fiona Lancaster - Committee Officer
1. Apologies and Substitution Notices
Apologies for absence had been received from Braintree District Councillor J Beavis, County Councillor R Gadsby, County Councillor A Naylor, and Chelmsford City Councillor M Sismey.
2. Declarations of Interest
Councillor A Wood declared that he was a Governor of the North Essex Partnership University NHS Foundation Trust.
The Committee agreed to vary the order of business and take the items on Questions from the Public (agenda item 4) and North East Essex Clinical Commissioning Group – Emergency Care Review (agenda item 5), and then to revert to the order of the published agenda.
The Committee noted that a protocol was being developed by the Scrutiny Officer and Committee Officer to guide future contributors on ensuring that they provide paperwork that was focused and relevant.
3. Questions from the Public
There were no questions from the public.
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2 Minutes 8 October 2014
4. North East Essex Clinical Commissioning Group (NE Essex CCG) – Emergency Care Review
The Committee considered a report (HOSC/40/14) on the North East Essex Clinical Commissioning Group’s Integrated Commissioning Consultation and Engagement Proposals.
The following people were in attendance to introduce the item, to answer questions, and to gain feedback on the content and the proposed actions:
Sam Hepplewhite, Chief Operating Officer, NE Essex CCG Jo Broadbent, Director of Integration and Innovation, NE Essex CCG Carol Wood, Communications and Engagement, NE Essex CCG
During discussion the following was acknowledged, highlighted or questioned:
(i) NE Essex CCG was focusing on the quality and experience that patients receive; (ii) A key aim of the draft urgent care strategy is to reduce unplanned hospital admissions by 3.5% by the end of 2015. The aim to lower A&E attendances was deliberately ambitious. However, NHS England expects each Health and Wellbeing Board area to aim to reduce their non-elective admissions to hospital by a minimum of 3.5%, either through the Better Care Fund (BCF) schemes or through previously agreed Clinical Commissioning Group (CCG) schemes outside BCF; (i) NE Essex CCG has an ongoing dialogue with the public and providers of services. It is also speaking to over 90 prospective providers of services and GP patients in relation to the possible range of options for delivering the transformational change it requires; (ii) A procurement panel was being set up and would include patient and public participation; (iii) The three models of urgent care that are being considered may change following public consultation. The system needs to be fit for purpose for patients and clinicians; (iv) Members encouraged NE Essex CCG to consult with all individual staff members, in addition to gaining ideas from frontline staff who attend NHS workshops; (v) Patients need a clear understanding of how to access services and what services are available; (vi) NE Essex CCG was looking at initiatives to reduce the number of people seeing GP’s by redirecting patients, where appropriate. For example, flu vaccinations were being rolled out more widely by pharmacies. The 2013 communications campaign would be amended to highlight the different points of access to health services and to promote the NHS111 Service; (vii) Mental health services need to be integrated more closely and service times improved in recognition of national strategies. Investment in additional services in A&E and liaison had been made to help those with mental health issues; (viii) NE Essex CCG recognises that its’ strategic plans are reliant upon workforce levels, and it is working with NHS England for example, to encourage more GP’s to come and work in Essex; Page 8 of 230 8 October 2014 Minutes 3
(ix) Support in the new service model will be tiered so that different, and appropriate, levels of support can be provided. NE Essex CCG was particularly looking to improve support for children and dementia sufferers; (x) The heavy reliance on care homes and current concerns regarding quality of service throughout Essex; (xi) A new whistleblowing policy was being introduced and the possibility of extending this to staff from other organisations would be explored; (xii) Creating an urgent care centre at the front of A&E could simplify the system as patients would go to one place for emergency and urgent care treatment; (xiii) With regard to the aim for same day GP consultations, Members stressed the importance of not raising expectations beyond the deliverable, especially since not everyone needs urgent access to their GP; (xiv) Members expressed interest in the robustness of IT systems between A&E and primary care and how far they were joined up. A potential solution had been identified that would join up a number of silo systems.
David Sollis at Healthwatch offered, and it was agreed, that he would work in partnership with NE Essex CCG on the procurement process, from the initial training of staff on procurement, through to testing of the service and asking for feedback.
The full business case for the Care Closer to Home procurement will be submitted to the NE Essex CCG Board in November 2014.
Due to commercial sensitivities, the Committee agreed that a further NE Essex CCG briefing would be provided in private as the documents develop.
Sam Hepplewhite, Jo Broadbent and Carol Wood were all thanked for their attendance and input, and they left the meeting at this point.
5. Minutes
The minutes of the meeting of the Health Overview and Scrutiny Committee held on 10 September 2014 were approved as a correct record and signed by the Chairman.
With regard to minute 7, item (xii), the Scrutiny and Corporate Governance Manager drew Members’ attention to an email update received from Carolyn Larsen, Head of Primary Care, NHS England (Essex Area team) on the issue of seeking developer contributions to primary care provision in the local area for developments of less than 50 dwellings. The Uttlesford District Councillor expressed some concern regarding the response, and indicated that he would like to receive confirmation that there is no legal barrier to contributions being sought from developments of less than 50 dwellings. He explained that the financial contribution is calculated by applying a standardised formula and that in his view, the review of such applications was not resource intensive.
Members noted that the Scrutiny Officer would report on the timescale to re- engage with Basildon and Thurrock University Foundation Trust later in the year,
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4 Minutes 8 October 2014
and would be maintaining a watching brief on Colchester Hospital University Foundation Trust.
There were no other matters arising.
6. Task and Finish Groups: Update
The Committee noted a report (HOSC/41/14) from the Scrutiny Officer providing an update on the two Task and Finish Groups established by the Committee on 2 July 2014.
Councillor A Wood informed the Committee that the Complaints Handling Task and Finish Group had held its first meeting and had decided to focus its scrutiny on current complaints handling processes at Acute Trusts in Essex. NHS England Essex Area Team would be speaking to the Group outlining the framework in which Acute Trusts operate, and how complaints processes should work in NHS, Member visits to their local hospitals would also be arranged. (Afternote: a representative from each of the Southend and Thurrock Unitaries would be co-opted to the Group).
Councillor Fisher reported that the Obesity Task and Finish Group had held its inaugural meeting and would be focusing on prevention measures aimed at pre- school and primary school children. Member visits to local schools would also be arranged.
The Committee approved the scoping documents provided for each Group, which included the membership and terms of reference.
7. General Update
The Committee noted a report (HOSC/42/14) from the Scrutiny Officer outlining updates on various health matters.
The Committee was encouraged to attend Clinical Commissioning Group (CCGs) and Acute Trust Annual General Meetings to help raise the profile of the Health Overview and Scrutiny Committee. Councillors Lissimore, Cutmore and Bobbin reported on their individual experiences of attending the North East Essex CCG, West Essex CCG and Basildon Hospital AGMs respectively, and on the value of hearing pertinent questions from the public.
Councillor A Wood reported that he was meeting with Louise Hagger, Commissioning Manager Maternity and Children’s Services, North East Essex CCG, for an update on the effect of the new independent midwifery service operating in the North East Essex area separate to that being offered by Colchester Hospital University Foundation Trust. The Committee welcomed the offer from Councillor A Wood to provide an update on this matter at its next meeting.
The Committee noted that work was underway to put in place a process whereby Essex County Council appointed representatives serving on CCG and Hospital Trust Boards would also formally report back to the Health Overview and Scrutiny Committee. An update on this matter will be provided by the Scrutiny Officer in Page 10 of 230 due course. 8 October 2014 Minutes 5
8. Work Programme and Tracker
The Committee noted a report (HOSC/43/14) from the Scrutiny Officer outlining the current programme of on-going reviews and already scheduled work.
The Scrutiny and Governance Manager highlighted the topics planned for the November meeting, and Members noted the request to submit questions and issues of concern in advance so that key lines of enquiry can be drawn up and sent to contributors. He also mentioned the possibility of having a future item on Engagement with the Young Essex Assembly, to explore the link between bullying (particularly cyber bullying) and mental health in young people.
Members noted that the Healthwatch Essex report into cancer care at Colchester Hospital would shortly be available [Afternote: the report was circulated by the Scrutiny Officer, by email, on 15 October 2014].
The Chairman reported that Councillor Anne Brown had offered to periodically provide a general update on health issues, some of which could come forward for scrutiny, and this was welcomed.
The Chairman proposed, and it was agreed, that a private pre-meeting for all Health Overview and Scrutiny Committee Members would be held ahead of each monthly Committee meeting starting at 09:30 (in Committee Room 1). The sessions would enable Members to agree an approach to each agenda item, consider what was being asked of the Committee, and discuss the potential lines of enquiry to be pursued in the formal meeting.
Members also noted that the Committee Officer would be in touch shortly to arrange future quarterly briefing sessions.
9. Date and Time of Next Meeting
The Committee noted that the next meeting would take place at 10:00 on Wednesday 5 November 2014, in Committee Room 1 at County Hall (preceded by a private pre-meeting at 9:30).
There being no further business the meeting closed at 11:35.
Chairman 5 November 2014
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Page 12 of 230 AGENDA ITEM 5
HOSC/44/14
Committee: Health Overview and Scrutiny Date: 5 November 2014
East of England Ambulance Service NHS Trust To consider the update report attached (includes Appendix 1 and 2).
Other attachments to the main update report are as follows:
Appendix 3 – call categories and targets (What Happens when you call 999 for an ambulance?)
Appendix 4 – extract from HOSC minutes of 2 April 2014
Please note that the following representatives will be in attendance on the day:
Karl Edwards, Senior Locality Manager for West Essex
Jemma Cracknell, Business Support Manager for Essex
Chris Hartley, Communications Director
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Page 14 of 230
Essex HOSC meeting 5 November 2014
Background information In January 2014, new Chief Executive Anthony Marsh took up post and immediately implemented a set of priorities to address the issue of insufficient staff and resources. The priorities are as follows;
Recruit 400 student paramedics in 2014/15 Up skill Emergency Care Assistants (ECA) to Emergency medical Technicians (EMT) and EMTs to paramedics Maximise clinical staff on frontline vehicles Reduce response cars and increase ambulances Accelerate fleet and equipment replacement programme Reinvest corporate spend in frontline delivery
Significant progress has been made in all areas of the plan and the Trust is starting to see the benefits of this hard work:
Thousands of applications to become student paramedics received. To date EEAST has made 536 offers for the student paramedic programme, with 59 of these being from existing ECAs in the Trust; at the moment, 125 of those are on their initial course and 122 are already operational. To date 69 contracts have been offered to qualified and graduate paramedics and qualified emergency medical technicians. All existing student ambulance paramedics, who in some cases have been waiting for years to complete their training, will be qualified and registered as paramedics next year. This involves approximately 150 staff. 40 emergency care assistants (ECA) have been trained to emergency medical technician (EMT) level and 60 ECAs will be trained every year through this pathway until every ECA who wants, and is able, to progress has completed their training. EEAST is looking to introduce a modular course for ECAs to progress to EMTs to speed up the training process and give staff more options and opportunities. 50 EMTs have been accepted on the pathway to become paramedics. EEAST is recruiting staff into the emergency operations centres and so far have welcomed 21 new call handlers and 11 dispatchers. A further 58 call handlers are being recruited and trained. 147 new ambulances have been delivered to the front line to replace old ones and increased the fleet size by 27. A further 120 new emergency ambulances have been ordered, of which 12 are already operational on ambulance stations. The rest will all be delivered by March 2015 meaning EEAST has no ambulance or rapid response vehicle older than five years. £10m of savings have been found internally and will be reinvested in frontline services by ending a number of interim contracts, reducing management costs and streamlining back-office services. To give our valuable and highly skilled staff in patient transport services an opportunity to develop, the healthcare referral tier has been introduced, which is a vehicle used specifically to transport Doctors ‘urgent’ patients; this means we have more paramedics available to send to 999 patients. Sixty staff will have completed their training and will be operational by the end of this month.
Page 15 of 230 The table below shows, by county, where the new student paramedics will be based, showing that Essex will be seeing a sizeable increase in its frontline work force.
Bedfordshire Cambridgeshire Essex Hertfordshire Norfolk Suffolk Total Student 68 73 142 83 96 74 536 paramedics Graduate/ Direct Entry 10 11 16 14 10 8 69 Paramedics & EMTs Healthcare Referral 5 21 22 16 64 Tier
The graph below will give you an idea of the shift in frontline staff numbers the Trust will see by the end of March 2015. It also shows that even with this significant recruitment drive more staff are required. Therefore EEAST will be looking to carry out another significant recruitment drive for paramedics next year.
2800 Operational Staffing
2700
2600
2500
2400
2300 Operational Staffing Achieved
2200 Target Staffing
2100 31/08/14 30/09/14 31/10/14 30/11/14 31/12/14 31/01/15 28/02/15 31/03/15
To retain and support frontline staff, in October new career pathways for EEAST paramedics and EMTs were introduced. Staff can now progress to senior paramedic and senior EMT roles by taking on new skills such as mentoring and advanced clinical skills and will be rewarded for this additional level of expertise.
All these actions, such as giving staff the best equipment and ambulances, recruiting hundreds of new staff and opening up career development opportunities, are starting to make a difference to morale and improve retention.
Page 16 of 230 To further support frontline staff, EEAST has put in place a new operational management team and are just working on the final tier of that now. This will give a stable management structure to support staff and will resolve an issue that has been outstanding for years.
Essex frontline staffing Current status of numbers of clinically trained frontline staff within Essex Area Number of Band 3-6 Ambulance Staff Essex North 152.65 Essex Mid 133.72 Essex South West 122.48 Essex South East 116.97 Essex West 101.52 Total 627.34
The Essex funded establishment should be 744 which still shows a vacancy factor of 116.66 WTE. As detailed previously, the Trust has been recruiting hundreds of student paramedics in order to address the shortfall of clinically qualified staff.
There has also been targeted recruitment of Emergency Operations Centre (EOC) staff. In Essex so far this financial year there have been eight new recruits to the position of Emergency Call Handler, with an additional one that was recruited internally and five new recruits to the position of Emergency Dispatcher, with an additional two recruited internally. Three staff have been upskilled from Emergency Call Handler to Emergency Dispatcher.
The table below shows the status of the 142 student paramedics who will be based in Essex. This shows the course start date, when they will be operational and the area they will work from.
There is ongoing recruitment for direct entry clinicians. Short listing has been completed and interviews and assessments are due to take place on the 4th November. At this point we are not able to state the number of these further direct entry applicants that have requested to work in Essex. However moving forward all direct entry applicants will identify the area of the Page 17 of 230 East of England they are applying for at application stage which will enable a more local recruitment process to take place and ensure the process is completed at pace and interviews conducted within the county of application.
To date, Essex has received 12 direct entry clinicians this financial year with a further four due to start.
In addition to the student paramedic recruitment programme, the Trust is up skilling our current workforce. There are 35 Essex ECAs that will complete the conversion course to EMT level this financial year. 11 have already completed the course, 12 staff are currently on the course with a further 12 commencing the course in January 2015. Essex also has 3 EMT staff that are in the process of completing the EMT to Paramedic pathway.
Maintaining and improving standards Whilst the Trust is recruiting these additional staff, we need to maintain and improve the service we provide our patients. Performance dtaat is set out at Appendix 1. The following actions, set out below, have been taken to address this.
To maximise the clinical staff available on frontline vehicles the Trust has significantly reduced the number of frontline staff who are on secondment. Currently within Essex the only secondments continuing are for the role of Hospital Ambulance Liaison Officer (HALO) which work closely with the Acute trusts within the county to facilitate a timely turnaround of ambulances at the A&E departments and minimise ambulance out of service time. All other secondments have been ceased and clinical staff returned to front line duties
As a result of recruitment and maximising frontline staffing the Trust has seen an improvement in the level of ambulance cover and therefore in Essex we have re-introduced 10 Rapid Response Vehicles (RRVs). However these positions are over and above the funded establishment and will need to be recruited to over a period of time.
The Trust has agreed maximum response standards which are termed tail targets/standards. These tail standards are monitored daily by the Trust and breaches of these standards are subject to investigation (see tail breaches table below). These targets will remain in place while the trust is in recovery and are key to achieving national performance standards and monitoring patient safety which is our goal.
Within Essex, the Trust has seen a decrease in tail breaches in August and as more and more staff are recruited to the frontline we will start to see improvements against national response time standards.
The Dengie area saw the introduction of a 24/7 ambulance in Burnham on Crouch which became operational from the 1st September 2014. This is in addition to the 24/7 Rapid Response Vehicle which is also based there.
Morale At the start of the year, the Trust had a large vacancy factor with increasing demand and activity. This had an obvious impact on our front line staff. EEAST have addressed this by Significant recruitment drive providing more staff to spread the work load Providing staff with the best possible equipment and vehicles Upskilling existing staff to enable a more measured skill mix on ambulances and give staff the opportunity to progress their careers Completing the management restructure to ensure the right support is in place for staff
Page 18 of 230 The introduction of the senior paramedic and senior EMT roles, which all relevant staff can apply for and opens up new career pathways. Conducting exit interviews where possible and appropriate to understand reasons as to why staff have left the trust.
Hospital hand over times Appendix 2 gives a breakdown of the hours lost for each Acute Hospital in Essex since the beginning of the financial year by day of week. You will see from the linear line on these graphs that 3 out of the 5 Essex acute hospitals have seen an increase in arrival to handover times.
EEAST have recruited Hospital Ambulance Liaison Officers (HALO’s) until March 2015, who are based at all five Essex acute hospitals within the A&E department. They are responsible for facilitating the clinical handover process ensuring the patient is handed into the care of the hospital within 15 minutes of the ambulance’s arrival and the post hand over element ensuring crews are available to respond within 15 minutes following patient handover.
A reduction of these lost hours alongside working with acute trusts, commissioners and emergency care networks to ensure crews are fully aware of out of hours providers and alternative care pathways available will improve response times as well as patient satisfaction and experience.
In addition, an audit has been completed in conjunction with Mid Essex Hospital Trust (MEHT) at Broomfield. This audit was conducted over four days and the purpose of this was to review the clinical suitability of patients conveyed to the A&E department. The time frame also included a weekend to gather the most accurate picture of journeys. To summarise the results, 152 patient journeys were audited and out of this figure only 6 of these (4%) did not require A&E attendance with 96% of patients conveyed following the correct pathway to A&E.
Brief overview of other initiatives for Essex Introduction of a Logistics desk as a trial in Chelmsford EOC. The aim of this is to be an essential link between road staff and EOC, providing a proactive approach to functions such as o Single point of contact for all staff o Provide staff welfare and support o Advise EOC staff on operational issues, operational out of service time and potential resolutions to reducing out of service time. o Overview of Essex resourcing focusing on skill mix.
Introduction of Health Care Referral Tier dedicated desk within EOC which will be solely responsible for planning the work load and journeys of these resources to ensure maximum utilisation of the urgent work load.
Continued review of the System Status Plan (SSP) and Dynamic Activation Points (DAP’s) within Essex. This is an ongoing piece of work which looks at the strategic points at which resources are placed on standby to ensure cover is spread and response times are reduced. A review has been completed and implemented with ongoing work to locate additional DAPs in identified areas.
Page 19 of 230 Appendix 1
Performance data for EEAST by Locality and call category
Year to Standard/Indicator Month to date (Oct-14) Last Month (Sept-14) date NSC Essex B&H NSC Essex B&H Trust wide Red 1 71.63% 74.90% 77.78% 65.12% 74.26% 75.67% 68.55% Red 2 57.20% 61.61% 70.47% 59.63% 63.02% 66.28% 61.15% R19 86.36% 91.28% 95.13% 88.71% 93.11% 94.09% 90.39% Green 1 80.09% 75.99% 85.54% 82.76% 83.38% 84.28% 76.61% Green 2 77.68% 70.51% 81.72% 82.87% 76.60% 78.06% 77.96% Green 3 90.83% 84.91% 90.52% 92.25% 89.66% 90.52% 89.96% Green 4 91.27% 87.77% 92.99% 93.03% 92.36% 92.89% 92.31% Urgent 79.58% 69.90% 70.67% 78.15% 78.13% 60.90% 75.72%
Tail Breaches Essex has seen a reduction in tail breaches in August, with a significant reduction in Red 2, Green 1 and Green 2 breaches. September’s data is not yet available. Actual and Forecast Trajectory April 2014 to March 2015 Category Red 1 30 Target Apr-14 May Jun July Aug Sep-14 Oct-14 Nov-14 Dec-14 Jan-15 Feb-15 Mar-15 Projection 0.22 0.19 0.40 0.42 0.41 0.37 0.09 0.09 0.19 0.11 0.06 0.03 (Monthly) Essex Actual 0 0 2 1 2 RAG Red 2 40 Projection 0.93 0.89 1.30 0.42 0.41 0.37 0.09 0.09 0.19 0.11 0.06 0.03 (Monthly) Essex Actual 22 25 30 42 10 RAG Green1 60 Projection 10.05 11.38 12.90 26.45 14.41 4.00 8.38 11.37 74.53 14.72 2.71 0.19 (Monthly) Essex Actual 49 103 61 68 13 RAG Green2 60 Projection 1.02 1.27 1.70 3.46 1.71 0.39 1.21 0.84 9.83 1.33 0.22 0.00 (Monthly) Essex Actual 149 252 172 249 178 RAG Green3 120 Projection 12.40 14.52 16.70 31.46 17.19 5.45 11.02 12.83 88.53 19.46 3.60 0.30 (Monthly) Essex Actual 1 5 7 5 3 RAG Green4 120 Projection 225.19 240.22 311.30 419.38 288.78 118.36 150.38 171.15 682.46 314.10 93.90 18.96 (Monthly) Essex Actual 72 96 105 136 112 RAG
Page 20 of 230 Appendix 2
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Page 26 of 230 What happens when you call 999 for an ambulance?
A call handler answers and checks the caller’s telephone number, address of the incident and reason for calling.
Depending on the nature of the call, the call handler will either advise the caller about the assistance they will receive and end the call, or stay on the line, offering practical help and advice where necessary.
Following a thorough clinical assessment using an internationally accredited system each call is given a prioritisation category based on the information given by the caller.
RED CALLS (Red 1 & 2) GREEN CALLS (Green 1 & 2) GREEN CALLS (Green 3 & 4)
These are calls that are classified as immediately life threatening Green 1: These are serious calls but not life threatening which Green 3: These are non emergency calls which require a on and require an emergency response (with blue lights). The target require an emergency response to arrive in 20 minutes. scene response within 50 minutes or a phone assessment from is to arrive at these patients within eight minutes in 75% of cases. Green 2: These are serious calls, but not life threatening, which the clinical support desk within 20 minutes (a clinician calling require an emergency response to arrive in 30 minutes. back for a secondary telephone triage to establish the best Examples are: pathway of care). Red 1: Cardiac arrest or life-threatening traumatic injuries Examples are: Green 4: These are non emergency calls which require a on Red 2: Serious breathing difficulties or suspected stroke Green 1: Diabetic problems or suspected stroke with scene response within 90 minutes or a phone assessment from with serious symptoms. no serious symptoms. the clinical support desk within 60 minutes. Green 2: A suspected fractured arm or leg or a fall with injuries that may hamper mobility but are not life threatening. Examples are: Green 3: Overdose with no symptoms or a non serious assault injury. Green 4: Minor scalding, a fall with no apparent injuries or Community first responder someone in pain but with no urgent symptoms. Rapid response vehicle (RRV) A volunteer trained to respond to certain emergency calls in their A car used by a paramedic or an emergency care pracitioner (ECP)to get to a patient quickly. Ambulance staff working in RRVs are skilled and local community. These may ‘Hear & treat’ - equipped to provide immediate care and to assess whether a patient include cardiac arrest, chest pain Enhanced clinical support desk and breathing difficulties. needs additional assistance and/or hospital treatment. If necessary the RRV will be backed up by an ambulance - although the equipment In each call centre there is a clinical support desk carried on both is very similar. (CSD) that is staffed by either nurses or ECPs who are able to clinically assess less urgent calls. This helps us to ensure patients receive the most appropriate Air ambulance Ambulance treatment and response and means the most serious The fastest way to reach patients in A specialist vehicle staffed by a two-person crew. Crew members will be patients can get the help they need. remote locations or to transfer paramedics, EMTs or Emergency Care Assistants (ECAs) who will be skilled Our CSDs help us manage calls that may not require seriously ill or injured patients to and equipped to assist patients with medical emergencies or traumatic an ambulance response so that patients receive the hospital. They are crewed by doctors injuries. If necessary they will be able to transport a patient to hospital or right care at the right time, in the right place. It or paramedics who have additional other appropriate treatment centre. supports national initiatives to reduce A&E admissions training in dealing with traumatic and treat patients closer to home. This is predicted to injuries and can be used to take Cycle Response Unit be much more cost effective but more importantly patients directly to specialist centres. A specially adapted bicycle fitted with blue lights and a siren and better for the patient and their family. equipped with life-saving equipment. It is ridden by an EMT, ECP or Patients are either transferred direct to a clinician for paramedic enabling them to respond quickly to patients in city centres further telephone assessment or, at busy times, may where vehicle access may be difficult. The quick response may save lives receive a call back. An on scene response will be sent or, if patients can be treated at scene, leaving ambulances free to deal Page 27 of 230 to anybody who needs it. Alternatively patients may with emergencies elsewhere. be advised to see their GP or other healthcare professional.
Page 28 of 230 Appendix 4
EXTRACT FROM THE HEALTH OVERVIEW AND SCRUTINY COMMITTEE MINUTES FROM 2 APRIL 2014
5 East of England Ambulance Service
The Committee considered a report (HOSC/11/14) comprising a report from the East of England Ambulance Service (EEAS) updating on priority actions being taken to address issues identified previously by the Care Quality Commission.
The following were present during the discussion on EEAS:
Rob Ashford, Interim Operations Director, Jason Gillingham (North Essex local manager), Chris Hartley, Associate Director of Communications and Engagement, Daniel Phillips, Clinical General Manager for Essex, Glenn Young (South Essex local manager),
New appointments
New appointments to the Trust Board were outlined. In addition to a new Chairman and new Chief Executive (who would also retain a two-days a week responsibility at West Midlands Ambulance Service NHSTrust), three new locality directors were being appointed to be responsible and accountable for the entire emergency and operational service in their respective areas and they would also sit on the Board thus ensuring a communications conduit for operational staff and local communities to the Board. Rob Ashford, who was present at the meeting had been appointed as the locality director for Essex and would take up his new post later in the week. A key area of focus would be to establish and maintain a stable management structure;
The new Chief Executive had immediately set the following priority actions: - Recruit 400 student paramedics in 2014/15 (the Trust would also aim to recruit some qualified paramedics and also approximately 50 graduate paramedics from universities); - Up skill the Trusts’ Emergency Care Assistants to technicians and up skill technicians to paramedics; - Maximise the number of clinical staff on frontline vehicles; - Reduce the number of rapid response vehicles (RRV) and increase the number of ambulances; - Accelerate the fleet and equipment replacement programme (147 new vehicles were on order for the current year with 27 of them being extra capacity); - Reinvest corporate spend in frontline delivery.
During subsequent discussion the following points were either highlighted and/or discussed:
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(i) There would be increasing focus on corporate spend being utilised on operational rather than back-office staff and services; EEAS acknowledged that further new investment was necessary but that they also would be looking to use existing corporate spend in a more cost effective manner so as to ensure a long term sustainable service that could meet national performance standards. Currently the EEAS had one of the highest reference costs amongst ambulance trusts. Updated benchmarking data was due to be published soon and the EEAS were looking to see some improvement in their performance benchmarked against other ambulance trusts; (ii) Encouraging and productive discussions on the 2014/15 service contract were ongoing with commissioners. In particular, internal efficiency savings of £20 million would be targeted together with seeking a significant further investment by commissioners of a similar amount; (iii) Some members questioned whether the EEAS service model was fit for purpose. It was acknowledged that significant parts of the region were rural and that the ambulance service currently could not be modelled so as to meet national standards in every single part of the region. Instead, the EEAS were looking at an acceptable ‘floor standard’ for those hard to reach areas supported by different more area specific delivery models (e.g. in the Southend area the service provided was based more around RRVs due to specific high service demands in the area). Specifically to improve response times in the Dengie peninsula in Essex a RRV had been assigned to be based in Burnham and the EEAS were looking to have a double staffed ambulance assigned in the location as well. Changes to local ambulance provision in Maldon were also being considered. However, it was stressed that the role of Community First Responders was crucial, especially in rural areas. The current EEAS conveyance rate to acute hospital was approximately 45% of all call-outs and there were significant opportunities to further reduce this rate, such as the increased use of local health/medical centres. In areas where there was a significant ageing population the EEAS were working with stakeholders to look at alternatives to dispatching an ambulance in certain circumstances (e.g. such as the use of falls cars); (iv) The recruitment of 400 student paramedics was considered achievable and had been calculated on the basis of 300 identified vacancies and an attrition rate of 150 for the next year, with 50 graduate paramedics also being taken on and some direct recruitment from existing Emergency Technicians. Drop-out rates from the training programme had also been anticipated. The first advert for student paramedics in January had resulted in approximately three and a half thousand applications with 84 already confirmed offers of employment. It was expected that 116 of the 400 student paramedics to be recruited would be based in Essex. A similar recruitment programme was being developed for subsequent years. Paramedics could train either through completion of a 3-4 year course in paramedic science at University or as a student with EEAS by training on the job (effectively in an
Page 30 of 230 apprenticeship with an appointed mentor), starting with an initial three month training period, followed by a probationary year to demonstrate competency before transitioning to an Emergency Technician role ; (v) There were increasing opportunities for clinically trained staff to further develop at EEAST. The first ECA to technician course has been completed with further courses planned through the year. The first cohort of students were being enrolled on their training to progress to paramedic this month. To increase front line staffing,137 clinically qualified staff had been identified as working in roles that were not delivering core front-line services and 83 of them had been moved back to front-line duties with more to follow; (vi) Essex had received 26 replacement ambulances with a further six by month end. There would be six additional ambulances in Essex to increase frontline capacity. New staff rotas were being established to incorporate the extra ambulances being provided. A new ambulance station was going to be built in Chelmsford which incorporated new training facilities and vehicle cleaning suite. 16 replacement RRVs also were allocated to Essex (RRVs now all had four wheel drive capacity) ; (vii) Reducing the number of RRVs and increasing the number of ambulances was aimed primarily at further improving patient safety and reducing long ambulance delays. It was stressed that the use of RRVs would still play an integral part of the EEAS response capability but the balance between these single staffed vehicles and ambulances (dual staffed and who could transport patients to hospital) needed to be adjusted. (viii) Legislation was strict on the skills expected from drivers of ambulances and other response vehicles with all drivers and other staff in the vehicles being required to have a minimum standard of clinical proficiency. The EEAS were looking to improve the skill mix (through the recruitment of more paramedics) on their ambulance and response vehicles; (ix) There were limitations on the situations to which Voluntary First Responders could be sent to attend; (x) Service user demand was constantly analysed to identify peak shift times and any trends. In particular, the EEAS were now busier in the 12 midnight – 4am slot than in the afternoon and this had led to the re- introduction of increased night time cover; (xi) Positive discussions continued with commissioners and the acute hospital trusts on improving handover times upon arrival at an acute hospital and subsequent clearance time. Routinely 15 minutes was allocated to clean and sterilise an ambulance after use before it was available for next call-out but this was variable and there would be some outlying instances which took significantly longer; (xii) The EEAS gave regular feedback to commissioners on the possible operational implications of proposed reconfigurations of clinical services as part of wider stakeholder engagements (e.g. the stroke review). More generally, the EEAS would also feedback when it felt that inappropriate ambulance journeys had been commissioned; (xiii) The EEAS continued to take actions to improve staff sickness and staff morale. Staff feedback had identified that there were too many staff
Page 31 of 230 communication channels (EEAS were moving to just using one), and that negative media coverage affected morale (EEAS were highlighting more ‘good news stories’ in the local media). A staff awards ceremony was being planned to recognise staff achievements; (xiv) No pressure was put on staff to work overtime and EEAS continued to monitor levels of overtime to ensure they were not excessive. Private and voluntary ambulance services were used to ‘bridge the gap’ where appropriate and stringent checks and monitoring were made to ensure that corporate standards were being maintained.
Conclusion
The EEAS invited members to visit Chelmsford control room and/or participate in a ‘ride-out’ in an ambulance for a day. The Committee agreed that (i) further information would be provided on back office staffing levels pre- reconfiguration, what they are now and what EEAS envisaged them to be at the end of the process; (ii) a further update should be provided by the EEAS in approximately six months’ time. Thereafter, the EEAS contributors were thanked for their attendance and left the meeting.
Page 32 of 230 AGENDA ITEM 6
HOSC/45/14
Committee: Health Overview and Scrutiny Date: 5 November 2014
Healthwatch Essex Healthwatch have been invited by the HOSC to present their recent published report on their survey of cancer services at Colchester Hospital University Foundation Trust (CHUFT). This gives the Committee the opportunity to receive information relating to CHUFT from an independent source. The opportunity is also being taken for Healthwatch to brief the Committee on its Strategic Plan and Work Plan. It is intended that this can be the first of many opportunities in future where the HOSC can benefit from research by Healthwatch, which will help the HOSC identify trends and issues and possible areas for future review, and use such research to increase its effectiveness in holding health organisations to account. Documents attached are: 1. A summary document of the Colchester cancer report; (Attachment A) 2. A copy of the Healthwatch Essex report on patient and carer experience of cancer services in Colchester; (Attachment B) 3. A copy of the Healthwatch Essex Strategic Plan, 2013-2016 (Attachment C) 4. A copy of the Healthwatch Essex operational plan for 2014-15. (Attachment D)
In attendance from Healthwatch will be Dr Tom Nutt, Chief Executive Officer, and Dr Oonagh Corrigan, Commissioning and Research Manager.
Action required: The Committee to: (i) Consider how it wishes to follow-up on the survey of cancer care patient experience at CHUFT and relate it to the rest of the information it is getting from CHUFT, the North East Essex CCG and regulators; (ii) Make any observations on the Strategic Plan and Work Plan of Healthwatch; (iii) Consider if any of the issues outlined in the Healthwatch Work Plan could warrant further investigation by the HOSC; (iv) Consider whether any research arising from the Work Plan could help inform the HOSC in any current or future scrutiny by the Committee.
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Page 34 of 230 Essex
Cancer services in Colchester: Recommendations 1. Improve communication – between health professionals and patients/carers and between healthcare a study of patient and carer experience departments. This must be made more effective at all levels and by all healthcare professionals. 2. Build in effective ways ofunderstanding patients’ and carers’ experiences – this is fundamental to how the Trust can continuously monitor and improve quality. Background 3. Maintain support and engagement for existing cancer support groups, and facilitate the formation Healthwatch Essex carried out this study to provide evidence of patient and carer ‘lived experience’ of of new groups for cancer types not already represented. cancer care and treatment in Colchester. This was in response to a report by the Care Quality Commission in November 2013 which identified a number of serious problems with cancer services at Colchester 4. Provide formal education and training opportunities in ethics for staff at the Trust and elsewhere Hospital University NHS Foundation Trust (CHUFT). in the Colchester area. This will help ensure that all patients are treated with dignity and respect, that there is shared decision-making and that patients are listened to. As an independent organisation, with a legal responsibility to gather information on patient and service user experience of health and social care in Essex, Healthwatch Essex was well placed to carry out this important research.
Conclusion Next steps The importance of patient and carer experience The aim of the study was to explore patient and We are considering carrying out further carer experiences of cancer journeys and it was qualitative research in the next 12 months Along with clinical efficacy and patient safety,patient experience is one of the three cornerstones not designed to be a comprehensive assessment to gain insight into the lived experience that make up quality of care in the NHS. Yet detailed accounts of how people experience their overall of treatment and care at the Trust. The way of doctors, nurses and other healthcare cancer journey are often overlooked in the NHS, and it has the power to remainvivid in people’s people feel about their experience of cancer care professionals involved in the delivery of recollections long after the event. It was therefore crucial to investigate this aspect of care at the Trust. influences the confidence and trust they have cancer care in Colchester. We believe that the in the wider NHS and also contributes to their experiences and views of all those involved overall physical health and emotional wellbeing. in providing and receiving care and treatment What did we do? need to be heard if improvements are to be Overall, Healthwatch Essex recommends that We asked patients and carers who had experienced cancer services at Colchester General Hospital made and sustained in the future. collecting and learning from patient experience and Essex County Hospital in the last 3 years to share their story with us. By collecting in-depth across the cancer pathways at CHUFT and all narrative accounts, we were able to build a detailed picture of people’s cancer experiences. NHS organisations should form an integral part We would like to thank all the patients of their practice and one that is fundamental to and carers who took part in this study. We collected people’s experiences through: improving quality of care. We encourage CHUFT The full report is available at: to develop best practice in this area. www.healthwatchessex.org.uk
Contact us www.healthwatchessex.org.uk a survey of focus groups held through in-depth one-to-one over 170 patients local cancer patient groups – interviews with and carers around 30 people took part 16 patients and carers @HWEssex In total, over 200 people took part in the study. Around two thirds were patients and one third were carers. [email protected]
01376 572829 What did we ask? RCCE House, Threshelfords Business Park, We asked people about how they experienced their treatment (surgery, chemotherapy, radiotherapy Inworth Road, Feering, Essex CO5 9SE etc.), and also their care (feeling cared for and supported). We also asked whether they felt their views/ experiences were listened to by doctors, nurses and others involved in their care and whether they had Essex fed back comments or complaints more formally. Octo ber 2014. Healthwatch Essex. A company limited by guarantee and registered in England (no. 8360699) and a registered charity in England & Wales (no. 1158356). Registered Page 35 of 230 address: RCCE House, Threshelfords Business Park, Inworth Road, Feering, Essex CO5 9SE. What did we find? Overall, we found a mixed picture of patients’ and carers’ experiences. A large proportion of participants had both praise and criticism for aspects of their treatment and care, regardless of whether they were generally satisfied or dissatisfied.Several key themes were identified.
Patients’ and carers’ needs, values and preferences Quality of care Appointments • Almost all patients were extremely “I need to feel like I’ve got some • Although around two thirds of people reported and administration complimentary about the quality of care that they were satisfied overall with the quality sort of input or control into what • A recurring complaint was the need to chase provided by Cancer Nurse Specialists. of care given, some of these, and others who is happening with the treatment, test results and/or follow up appointments. In particular, they valued the empathy and and they have always given me were not satisfied overall, reported experiences support these nurses provided, and the extra that, which is something that I’m of poor care and a neglect of basic needs. • Another frequently-raised issue was practical information they were able to share. grateful for, because it made me For example: appointments being cancelled and rescheduled with the ensuing sense of • In addition to people wanting to be treated as – Clinical staff did not always listen to feel like I had a choice.” anxiety, frustration and disappointment individuals, they also had an overwhelming patients’ and carers’ concerns and took Patient with gynaecological cancer this causes patients and carers. wish to be treated with care and dignity. a long time to respond to patient requests; • Many people felt care at the Essex County They also wanted health professionals to • Several people complained about mix- Hospital was of higher quality than at – Nursing staff said they would be back appreciate that patients often feel vulnerable ups and misinformation, when people were Colchester General Hospital. Overall, people shortly then didn’t return; and need to be reassured throughout their sent the wrong appointments or not notified felt care here was more patient-centred and cancer journey. Unfortunately, there were – Patients were often left to tend to their correctly of their appointment times. less time-pressured. The Mary Barron suite many cases where the service did not meet own washing, feeding and toilet needs received an exceptionally high level of praise • A number of patients and carers were these needs. even when it was apparent that they dissatisfied with the length of appointment across the research. were unable to do so; • Participants also highlighted their desire times. People felt there was not enough • Cancer support groups were regarded to be kept well informed about how their – Buzzer response times were very slow (or time to discuss questions and concerns, as a vital lifeline to many patients. treatment was going. Again, this did not buzzers were not being responded to at all); only to deal with immediate matters, and felt happen universally. People who felt they – Many people felt that protocol, process time-pressured. People whose appointments were not being kept updated were less satisfied and paperwork appeared to take were less hurried were more satisfied. with their treatment. precedence over basic patient care; • Choice and control were also highlighted – There was a perception that poor care as important issues. Levels of satisfaction was linked to understaffing. were higher when patients/carers had been Patient/carer feedback involved in decision-making. • People repeatedly reported low satisfaction • Patients and carers felt their views and with the quality of treatment and care people concerns were not always being listened to. received at busy times such as weekends and/or holiday times. • A number who had cause to complain or Communication provide critical feedback did not do so because • Some people also reported that their they felt afraid, vulnerable or had lost trust in • Communication was a key issue. Participants “If you start a journey off badly, discharge from hospital was rushed the system and felt that complaints would not stressed that clear good quality information, it stays with you.” and that once they were technically be heard and acted upon. personalised to the individual, was a key Patient with gastrointestinal cancer discharged they were left to ‘fend for factor contributing to high satisfaction levels. themselves’, when what they really • The motivation for many patients to participate in our study was not for compensation, rather • The manner and clarity in which a cancer “We were told the diagnosis with needed was continued support. the doctor standing, mumbling and for a sense of closure and improvement to diagnosis was given to the patient was • End-of-life care was sometimes not well the service. considered really important. At the core of fiddling with notes.” managed and the administration of pain many complaints was the feeling that bad news Carer of sarcoma cancer patient relief at Colchester General Hospital was not “I don’t want anything out of this. I just was delivered insensitively, without compassion, • Poor communication between hospital always considered to be adequate for some want things to improve for others.” and at worst in the middle of a ward, without staff members, and between the hospital patients who were critically ill. Carer of deceased pancreatic cancer patient any privacy. A general complaint was that and other health organisations such as GPs, consultants could deliver diagnoses in an abrupt was also experienced as a source of frustration “mechanical” way that lacked empathy, and that by patients and carers. Page 36 of 230 this affects their subsequent cancer journey.
Cancer Services in Colchester: A Study of Patient & Carer Experience
Dr. Oonagh Corrigan1, Nicky McGuinness2, Dr. Tom Nutt3, Dr. Nina Hallowell4, Duncan Wood5, Sarah Haines6.
October 2014
1 Commissioning & Research Manager, Healthwatch Essex 2 Contract Researcher 3 Chief Executive Officer, Healthwatch Essex 4 Contract Researcher 5 Research Ambassador, Healthwatch Essex 6 Information & Policy Officer, Healthwatch Essex Page 37 of 230 Acknowledgements
Firstly, we are indebted to the patients and carers who participated in our study. We are extremely grateful to all who shared their stories and experiences of cancer care and treatment with us. Our team of researchers were all moved by the heartfelt stories we listened to, and we remember those who, sadly, are no longer with us. We hope this report provides reassurance that the experience of patients and carers is acknowledged by key stakeholders to be a vital element of the continuous effort to improve the quality of cancer care services in Colchester and the wider NHS.
The study’s Steering Group provided invaluable advice and we would like to express our thanks to Louise McAvoy from Macmillan Cancer Support, Ken Aldred, our cancer patient representative, and Dr Ewen Speed, Senior Lecturer in Medical Sociology at the University of Essex.
We also thank the following organisations for their formal support of the project: Colchester Hospital University Foundation Trust, in particular members of the Incident Management Team; and the Cancer Board and North Essex CCG.
Page 38 of 230 2 List of Abbreviations
A&E Accident and Emergency Department
CCG Clinical Commissioning Group
CHUFT Colchester Hospital University NHS Foundation Trust
CQC Care Quality Commission
CT Computerised Tomography (Scan)
EAU Emergency Admissions Unit
HCA Health Care Assistant
HWE Healthwatch Essex
IMT Incident Management Team
MRI Magnetic Resonance Imaging (Scan)
PALS Patient Advice and Liaison Service
Page 39 of 230 iii Contents
Acknowledgements ...... ii List of Abbreviations ...... iii Executive Summary ...... 1 1. The Project Brief ...... 6 1.1 The importance of the project ...... 6 1.2 Aims ...... 6 2. Background ...... 8 3. Design, Methodology & Reasons for Approach ...... 10 3.1 Methodology ...... 10 3.1.1 Methods ...... 10 3.1.1.1 Survey ...... 10 3.1.1.2 Focus group interviews ...... 12 3.1.1.3 One-to-one interviews ...... 13 3.2 Ethics ...... 14 3.2.1 Confidentiality/anonymity ...... 14 3.2.2 Participants’ welfare ...... 14 3.2.3 Informed consent ...... 15 3.3 Quality assurance ...... 15 3.3.1 The Research Team ...... 15 4. Analysis and Results ...... 16 4.1 Survey analysis ...... 16 4.1.1 Experiences of care ...... 16 4.1.1.1 Quality of nursing care: empathy, compassion, dignity and respect ...... 17 4.1.1.2 Reassurance ...... 18 4.1.1.3 A caring place ...... 18 4.1.1.4 Confidence inspiring care ...... 19 4.1.1.5 Macmillan support ...... 20 4.1.1.6 The role of the specialist nurse ...... 20 4.1.1.7 Understaffing ...... 20 4.1.1.8 Communication ...... 21 4.1.1.8.1 Breaking bad news ...... 22 4.1.1.8.2 Communication between departments and with GPs ...... 22 Page 40 of 230 4 4.1.1.8.3 Who to ask? ...... 23 4.1.2 Experiences of treatment ...... 23 4.1.2.1 Medical complications and side effects ...... 23 4.1.2.2 Patients with co-morbidities ...... 24 4.1.2.3 Emergency admissions ...... 24 4.1.2.4 Problems with appointments ...... 25 4.1.2.5 Timescales ...... 26 4.1.3 Were views or experiences listened to? ...... 28 4.1.3.1 Being heard ...... 29 4.1.4 Responses to patient and carer feedback ...... 30 4.2 Focus group interview analysis ...... 32 4.2.1 The value of cancer support groups ...... 32 4.2.2 Communication ...... 33 4.2.2.1 Breaking bad news ...... 33 4.2.2.2 Treatment plan communication...... 34 4.2.2.3 Feedback ...... 35 4.2.3 Experiences of care ...... 36 4.2.3.1 Timeframes ...... 36 4.2.3.2 Cancer nurse specialists ...... 37 4.2.3.3 Consultants and other hospital doctors ...... 37 4.2.3.4 Partnership working between patients and staff ...... 38 4.2.4 Administration ...... 38 4.2.5 Clinical errors ...... 38 4.2.6 Responses to complaints ...... 39 4.2.7 The role and importance of carers in supporting patients ...... 39 4.3 Interview analysis ...... 41 4.3.1 Care ...... 41 4.3.1.1 Quality of care ...... 41 4.3.1.2 A caring place ...... 42 4.3.1.3 Personalised care and patient choice ...... 43 4.3.1.4 Empathy, compassion & dignity ...... 44 4.3.1.5 Communication ...... 45 4.3.1.5.1 Breaking bad news ...... 45 4.3.1.5.2 Consultants and hospital doctors, personalised care and bedside manner ...... 46
Page 41 of 230 5 4.3.1.6 Cancer nurse specialists ...... 47 4.3.1.7 Systemic Issues ...... 48 4.3.1.7.1 Understaffing ...... 49 4.3.1.7.2 Bed shortages ...... 49 4.3.1.7.3 Care at night/holiday periods ...... 50 4.3.1.7.4 Inexperienced staff ...... 50 4.3.1.8 Discharge and after care ...... 50 4.3.1.9 District nurses...... 51 4.3.1.10 Outpatient appointments ...... 51 4.3.1.11 Carer’s role ...... 52 4.3.1.11.1 The carer as patient advocate ...... 52 4.3.1.11.2 The difference a carer can make ...... 53 4.3.1.11.3 Who cares for the carer? ...... 54 4.3.2 Treatment ...... 54 4.3.2.1 Referral, diagnosis and treatment plans ...... 55 4.3.2.1.1 Referral...... 55 4.3.2.1.2 Adequacy of information ...... 56 4.3.2.1.3 Open, honest communication: promoting trust and managing expectations ...... 56 4.3.2.1.4 Developing treatment plans ...... 57 4.3.2.2 Pain relief ...... 59 4.3.2.3 Clinical errors ...... 60 4.3.2.4 Listening to patients ...... 62 4.3.2.4.1 Updates on patient progress and treatment ...... 63 4.3.2.4.2 Good communication reassures ...... 64 4.3.2.4.3 Improving communication ...... 65 4.3.2.5 End-of-life care ...... 66 4.3.2.5.1 Management of pain relief ...... 68 4.3.2.5.2 Clear communication about care plan and time lines ...... 68 4.3.2.5.3 Patient-centred care ...... 69 4.3.2.5.4 Communication – end-of-life ...... 70 4.3.2.6 Complaints ...... 70 4.3.2.6.1 Systemic issues: defensive culture? ...... 72 4.3.2.7 Administration problems ...... 73 4.3.2.7.1 Appointments ...... 73
Page 42 of 230 6 4.3.2.7.2 Communication within CHUFT ...... 75 4.3.2.7.3 Communication with health care professionals outside CHUFT ...... 76 4.3.2.8 Skeleton service at weekends & public holidays: ‘it’s a 4½ day a week hospital’ ...... 76 5. Case Summaries ...... 78 6. Conclusions and Recommendations ...... 107 6.1 Conclusion ...... 107 6.2 Recommendations ...... 109 References ...... 111 Appendices ...... 113 Appendix i - Questionnaire ...... 113 Appendix ii - Survey Promotional Methods ...... 117 Appendix iii – Interview Topic Guide ...... 120 Appendix iv – Ethics Approval Letter ...... 124 Appendix v – Research Team ...... 125 Appendix vi – Interview Analysis Methodology ...... 127 Appendix vii – Quantitative Analysis and Technical Report for Survey ...... 129
Page 43 of 230 7 Page 44 of 230 Executive Summary
Background
This research has been conducted in response to concern about people’s experiences of cancer care following the publication of the Care Quality Commission (CQC) report in the autumn of 2013. This highlighted a number of serious failings in the quality of cancer services at Colchester Hospital University NHS Foundation Trust (CHUFT).
As Healthwatch Essex is the independent body charged with patient and public involvement, our aim is to represent people’s ‘voices’ and the ‘lived experience’ of the citizens of Essex. This study was carried out with the intention of listening to cancer patients and their carers, and gathering personal accounts of people’s lived experiences of cancer treatment, care and support in Colchester during the three year period referred to in the CQC report. Our aim was to explore patient and carer narratives of cancer journeys.
Methodology
The study was designed to reveal people’s feelings and lived experiences of cancer care, rather than to generate a ‘representative’ or comprehensive assessment of treatment and care at the Trust. The ‘lived experience’ is a philosophical concept premised on the understanding that a proper scientific understanding of the social world cannot be undertaken by merely collecting ‘objective facts’ about an event, but that research needs to engage in an empathetic way with those involved in an attempt to get as close as possible to the world as experienced by those individuals. It is the lived experience that reflects and determines people’s confidence and trust in the healthcare system and undoubtedly contributes to their overall physical health and emotional wellbeing, and to their assessment of how the NHS functions in meeting their needs.
We adopted a three-phase, largely qualitative, multi-method approach utilising the following methods: Surveys (online and postal) directed at patients and carers. o This allowed us to gather standard overview information on people’s levels of satisfaction of cancer treatment and care as well as offering respondents the opportunity to provide narrative accounts of lived experiences through the use of open-ended questions. This data was statistically and thematically analysed. Focus group interviews with local cancer patient groups. o This allowed us to uncover not just individual experiences, but also patient group experiences, and patients’ and their carers’ collective experiences. Interviews were transcribed verbatim and common themes were identified.
Page 45 of 230 1 In-depth one-to-one interviews with a sample of survey respondents. o This enabled further exploration of emerging themes identified in the initial two phases and the opportunity to explore in more depth the lived experience. Interviews were transcribed verbatim and common themes were identified.
Results
More than 200 people took part in the study overall. We received 172 responses from our online and postal survey, with 92 of these providing expanded free text answers to our open-ended questions. While the majority of survey respondents reported that they were ‘satisfied overall’ with the treatment, care and support provided, we found that the measurement of satisfaction as captured in the participant questionnaires was a ‘blunt instrument’. When subsequently interviewed, many of those who gave high satisfaction scores also reported instances where they experienced poor quality care and treatment, and vice versa. A patient’s eventual health outcome was also a key determinant of satisfaction. For example, and as would be expected, when problems or poor care were experienced and the health outcomes for patients were not good, then this was likely to result in a low overall score. However, when patients experienced a good health outcome, their or their carer’s overall satisfaction score was often reported as high, even if they also experienced poor aspects of care and treatment. This cautions against the use of simplistic measures of satisfaction as an indicator of patient experience. Our survey indicates the importance of using qualitative methods to provide a more meaningful understanding of patient experience.
A total of three Colchester cancer support groups (Lymphoma, Gastrointestinal, and Urology) took part in focus group interviews. Each group was composed of patients and their partners. These were well attended and 26 patients and partners participated in total. These groups largely reported positively about their experiences of cancer care in Colchester and generally felt supported both individually, and as group, by the Trust and, in particular, by cancer nurse specialists.
A total of 16 participants took part in one-to-one in-depth interviews. Of these eight were patients and eight were carers. Overall there was a mixed picture of people’s lived experiences of cancer services in Colchester. However, a number of problems were consistently reported. Many of these relate to poor communication and basic, fundamental aspects of care. Some problems that were identified seem to be culturally embedded.
The following key findings have emerged following analysis, including cross analysis of all three data sources.
Page 46 of 230 2 Key Findings
Communication
The need to improve communication is a key finding. Studies show that effective communication between healthcare professionals and their patients not only improves the patient experience, in terms of improved patient understanding and trust, but it is also linked to better clinical outcomes for patients (Arora 2003; Epstein & Street 2007; Street et al 2009).
There were numerous accounts of poor communication between patients, carers and healthcare staff, as well as between various healthcare staff and between different healthcare providers. Many of our respondents reported feeling that protocol, process and paperwork appeared to take precedence over basic patient care. Failures in communication included instances of physician insensitivity with regards to breaking bad news, shared decision-making, and listening to patients. Some patients and carers felt that their concerns were often not listened to and that there was a defensive culture when a complaint was raised. Carers play a key role in providing care, advocacy and support to patients and are often highly valued by patients, but many reported feeling too easily dismissed by staff when they raised concerns and were not always part of the communication process regarding treatment decisions.
Treatment, Care and Support
There were times when patients were not given the assistance they required to help wash or feed themselves. Some patients reported feeling distressed with the length of time taken for nurses to respond to calls for assistance from patients’ bedside buzzers. These experiences increased their feelings of vulnerability and some reported feeling unsafe in hospital as a result. The journey from referral by their GP, diagnosis, and through to initial and ongoing treatment and care, was experienced by many as an emotional rollercoaster and a life-changing event. Some patients reported instances when they had been treated with a lack of dignity and respect by hospital staff and there were reports more generally of patients and carers feeling they were not treated as ‘individuals’. A few respondents reported problems relating to palliative care in Colchester, with some recounting instances of poor access to pain relief at Colchester General Hospital.
Page 47 of 230 3 There were numerous reports of patient and carer frustration and dissatisfaction due to appointment delays and administration errors in appointment timings. There was a general perception that the hospital was understaffed, and during weekends and bank holidays in particular this created problems in the quality of care provided.
However, there were areas of care that were consistently highly praised by respondents.
Cancer nurse specialists were highly acclaimed by patients and carers for their accessibility and attentiveness to patients’ needs and concerns. Both patients and carers gave high praise for the treatment care and support at Essex County Hospital, and, in particular, for how patient-centred and compassionate they found the care and treatment at the Mary Barron chemotherapy suite. Belonging to a cancer patient support group had a positive impact, with members feeling they were listened to and involved in decision-making. In general, members of support groups rated their care and treatment at CHUFT highly.
Recommendations
We recognise that the Trust has already put in place many measures such as improvements to administrative processes, including record keeping and appointment scheduling, as part of their review and their Cancer Action Plan. It is also recognised that in the most recent National Cancer Patient Experience Survey (Quality Health, 2014), patients have rated CHUFT staff highly for doing everything they could to help control patients’ pain. We suggest therefore, that the Trust continues to monitor this situation.
We would, however, urge the Trust and other providers of cancer services in Colchester to respond to the following recommendations:
1. More effective ways of ensuring that patients’ and carers’ views and experiences are listened and responded to. 2. Communication must be made more effective at all levels and by all healthcare professionals. 3. Qualitative methods in research, and ongoing evaluation, should be adopted so as to better understand patients’ and carers’ experiences and to support continuing quality improvement programmes. 4. Support for and engagement with existing cancer support groups should be maintained, and the formation of new groups for cancer types not already represented should be encouraged and facilitated.
Page 48 of 230 4 5. Continued professional development training opportunities in ethics, for staff 7 at the Trust and elsewhere in the Colchester area, should be provided.
Study’s Strengths and Weaknesses
A major strength of the study is the extent to which this unashamedly patient-centred approach has facilitated a way of seeing the patient’s journey holistically. So, while the study does not purport to be based on representative sampling techniques, and indeed our interview sample was biased towards those who reported lower overall satisfaction levels, we have gained insight into how care and treatment have impacted upon people’s emotions, everyday lives and ongoing attitude towards, and relationship with, healthcare providers.
One of the shortcomings of this report is that we have little in the way of comparisons, insofar as we were unable to uncover any similar studies of patient and carer experience at other UK hospitals, and so we do not know whether the issues we have identified would be found elsewhere if similar studies were carried out in other Trusts. Nor do we know the extent of these issues at Colchester. What we do know is that some of the issues we have identified, such as appointment delays, substandard administration and poor communication, echo the findings of the initial CQC inquiry, and have been recognised by the Trust and acted upon in their recovery Action Plan.
7 We suggest a ‘virtue ethics’ approach which is based on Aristotelean philosophy on what constitutes the good or virtuous life. This has become influential in modern medical ethics where it emphasises techniques that promote a person’s character and instructs their conscience, resulting ultimately in morally good acts. (Gardiner 2003; Hoyt-O’Connor 2004) Page 49 of 230 5 1. The Project Brief
1.1 The importance of the project
This project has been conducted in response to public and patient concern about the quality of cancer care services at Colchester Hospital University NHS Foundation Trust (CHUFT), following the Care Quality Commission’s investigation of cancer care at the Trust. In November 2013, the Care Quality Commission (CQC) identified a number of serious problems with cancer services at the Trust (Care Quality Commission, 2013). This Healthwatch Essex study was conducted in order to provide evidence of patient and carer ‘lived experiences’8 of cancer care and treatment at the Trust.
Healthwatch Essex is designated under legislation as an independent body to provide information on patient and service user experience of health and social care in Essex. We have high quality research expertise within our organisation, and it was agreed by CHUFT and other parties that, as an independent organisation, we were well placed to carry out this important research into patient and carer experiences of cancer care at CHUFT. Understanding the patient experience is one of the three main components for assessing the quality of care (Department of Health 2008).9 Furthermore, carers (patients’ spouses, sons, daughters, parents, friends, etc.) are also understood to be key stakeholders in ensuring/improving the quality of patient care (ibid).
1.2 Aims
The primary aim of the review was to produce evidence relating to people’s experience of cancer services in Colchester. The study sought to address the following questions: What is the lived experience of patients and carers who have undergone cancer services at CHUFT since 2010? How do patients and carers perceive the efforts of the Trust in their engagement with patients, their families/carers and the wider community? How well do patients and carers feel they are listened to by the staff they encounter and the Trust in general? Although our aim was to explore patient and carer narratives of cancer journeys, the study is not designed to generate a ‘representative’ or comprehensive assessment of treatment
8 The ‘lived experience’ is a concept that originates from the work of the German philosopher Edmund Husserl. Husserl proposed that a proper scientific understanding of the social world could not be undertaken by collecting ‘facts’ about an event, but rather the researcher needs to engage in an empathetic way with those they are studying in an attempt to get as close as possible to the world as experienced by those individuals. (Husserl, E. 1970 [1901]. Logical investigation. New York: Humanities Press.) 9 The other two components as identified by Lord Darzi (Department of Health 2008) are patient safety and effectiveness of care. Page 50 of 230 6 and care at the Trust, but rather it is an effort to reveal people’s feelings and lived experiences of cancer care. Our qualitative approach has its roots in phenomenological theory (a branch of philosophy) where participants’ subjectivity, personal perceptions and stories are valued as a form of knowledge. It is the lived experience that reflects and determines people’s confidence and trust in the healthcare system and undoubtedly contributes to their overall physical health and emotional wellbeing, and to their assessment of how the NHS functions in meeting their needs. The study seeks to identify recommendations applicable to CHUFT, the Clinical Commissioning Groups (CCGs) and the wider NHS and health economy, and to highlight lessons that can be learnt to ensure that patient experience is better incorporated into NHS governance and service evaluation and delivery.
Page 51 of 230 7 2. Background
Problems with some cancer services at the Trust were first raised in August 2013 following a tip-off from a hospital staff whistle-blower which prompted a CQC investigation. The CQC’s subsequent Report, published in November 2013 (Care Quality Commission, 2013), identified a number of problems with cancer services at the Trust, including not having ‘adequate systems to maintain the safety and welfare of people receiving treatment on the cancer pathway’ and not having ‘sufficient arrangements to promote effective performance of the cancer service’. It was reported that in some cases patients were waiting too long for treatment, and there were allegations of manipulation and falsification of statistical data and hospital records. Failings identified by the CQC were serious enough to warrant police involvement, and, as part of their investigation, the police and NHS England commissioned a medical legal review of the 30 cases identified in the CQC report. The hospital was placed on strict ‘special measures’10 and a number of reviews of cancer services at the hospital were initiated by the Incident Management Team (IMT), led by NHS England.
Most of the sources of evidence11 identified as forming part of the overall IMT response were sources that were either internal to the Trust or they were clinically-based. There were no plans initially to systematically seek an external or patient-centred viewpoint on cancer services on the wider question of patient and carer experience of cancer services at CHUFT.
On raising this issue, Dr. Tom Nutt, the CEO of Healthwatch Essex (who is also a member of the IMT) gained the approval and support of the IMT, the CCG and the Trust for Healthwatch Essex to obtain external sources of evidence relating to patient and carer experience of cancer care. It was proposed that Healthwatch Essex, as an independent12 organisation, should review the patient and carer experience of cancer services and should work with local patient groups to identify and gather additional sources of patient and carer experience, both directly from individuals and via voluntary and community groups active within the locality. The study was undertaken to fit the timescales of other investigations and so was carried out under a restrictive timeframe that precluded a prior literature
10 ‘Special measures’ involved action by three organisations: the CQC, Monitor and the NHS Trust Development Authority. All are independent but funded by the Department of Health as regulators working closely together to make sure patients get the best possible care from the NHS (http://www.nhs.uk/NHSEngland/bruce-keogh- review/Documents/Special-measures-FAQs.pdf ).
11 The sources of evidence reviewed by the Trust included calls made to the telephone helpline established by CHUFT following the CQC report, complaints made to The Patient Advice and Liaison Service (PALS), the Intensive Support Team report, and the peer-review process overseen by the Clinical Oversight Group.
12 Although independently and autonomously undertaken, the proposal for the study was supported by NE Essex CCG and CHUFT, NHS England, as well as Essex County Council, which provided ethics review and approval for the study.
Page 52 of 230 8 review. However, we have drawn on a range of appropriate literature throughout the report, including research on patient and carer experiences of cancer care.
Page 53 of 230 9 3. Design, Methodology & Reasons for Approach
3.1 Methodology
Our overall approach was to access the ‘lived experience’ of care and treatment at CHUFT and the wider NHS system by obtaining in-depth narrative accounts from patients and carers about their experience of cancer services in Colchester. It is well understood that qualitative methods,13 in the form of in-depth interviews, are an excellent means of eliciting this kind of information. However, while this is the principle method deployed, we also wanted to use a range of methods in order to maximise our reach, gain insight into a larger number of cases, and provide some statistical data about people’s levels of satisfaction with their care and treatment. We wanted to uncover not just individual experiences but also patient group experiences, and patients’ and carers’ collective experiences.
3.1.1 Methods
The following methods were selected: Survey directed at patients and carers. Focus group interviews with local cancer patient groups. In-depth one to one interviews with a sub-sample of survey respondents.
3.1.1.1 Survey
We chose to design and distribute a questionnaire (see Appendix i) aimed at obtaining standard overview information on people’s levels of satisfaction as well as offering respondents the opportunity to provide narrative accounts of ‘lived experiences’ through the use of open-ended questions. Given that we had no access to the patient names or contact details of those who had been in receipt of cancer care at CHUFT during the period under review, we anticipated that administering a postal and online version of the survey, and advertising this broadly using the media and our established networks and social media, would facilitate access to a wide sample of respondents. Patients, and carers of patients, who had been in receipt of cancer care during the previous three years were targeted. We asked carers to identify their relationship to the patient (e.g. daughter, son, spouse).
We thought it key to include carers as, in some cases, patients would be deceased, and carers also play a key role as patient advocates, witness patient care and are seen to play a
13 In qualitative methodology, the nature of knowledge is interpretive, including lived experience. There is a focus on developing theory from data by forming inductive propositions; exploring, rather than seeking causality and maintaining trustworthiness of data rather than generalisability. It seeks complexity not reduction, and aims to reveal ‘hidden’ meaning rather than control variables, and utilises purposive not randomised sampling techniques.
Page 54 of 230 11 crucial role in shared decision-making in matters relating to patient treatment and care (GMC 2008). Furthermore, it is recognised that carers’ needs are often overlooked in cancer services, and there is a need to develop research that centres on their experiences as well as those of patients (Mellor and Barradell 2008). The survey was designed to allow people to share their views and experiences with relative ease, and to indicate a willingness to participate in a follow-up interview. We chose not to adopt the format and categories of the National Cancer Patient Experience Survey as this is more clinically oriented and we wanted to use a much shorter survey in order to increase the chance of gaining a high number of responses, and to prioritise the free text questions on the ‘lived experience’. We designed 13 questions in total, including questions about gender, ethnicity and age, and we followed the National Cancer Patient Experience Survey’s categorisation of cancer types.
A mixture of open-ended and closed questions were developed to gain information about people’s experience of cancer treatment, care and support. Although we fully acknowledge that ‘treatment’ and ‘care and support’ are blurred categories, and indeed we hope that as practised in healthcare settings they would be integrated, we thought it worthwhile to make such an analytic distinction. Our reason for doing so was to get a sense of how respondents experienced treatment (surgery, chemotherapy, radiotherapy, medication, etc.) separately from how they experienced care and support. We used a five point grading scale, ranging from ‘dissatisfied’ to ‘extremely satisfied’, to ask respondents to rate their level of satisfaction regarding the ‘treatment’ and ‘care and support’ provided. We then provided free text space inviting respondents to tell us why they selected particular satisfaction levels. We were also keen to establish the extent to which people felt that any concerns or questions that arose during their cancer treatment and care were responded to. We therefore included a question asking whether respondents felt their views/experiences were listened to by doctors, nurses and others involved in patient care. Two further questions were asked to establish whether respondents had made a complaint or fed back their views/comments to one of the hospital, or external, patient support bodies such as PALS, the CHUFT hospital complaints services, Macmillan Cancer Support, or the North East Essex Cancer User Group (see question 7a, Appendix i, for the complete list), and whether they felt their feedback had been adequately responded to.
We piloted the survey to ensure that questions were clearly understood before submitting the study for ethics approval.
Access to the online survey was via the Healthwatch Essex website and we posted and distributed hard copies, including a large print version for visually impaired people, upon request. We promoted the cancer survey widely through a variety of media channels, with the aim of reaching as many of our target population as possible. We were keen to make sure that, as well as using cancer support groups to help promote the survey, people and families who were not members of these groups would have the opportunity to find out about it. Our target audience was people, and their families, who had experienced cancer
Page 55 of 230 10 care at Colchester Hospital University Foundation Trust over the past three years. This was very specific, as their cancer experience needed to align with the reviews being undertaken by other statutory bodies. Added to this, not everyone wants to share such intensely personal experiences in a survey or wants to revisit a potentially difficult episode of their lives, and, sadly, not everyone will have survived the experience, so the number of people available or eligible to take part was limited.
The survey was open for five weeks (26th March – 30th April 2014), which was a necessarily short window in order for our results to feed into the official review being conducted by the IMT. We used a range of methods, including the Healthwatch Essex website, social media (e.g. Twitter and Facebook), local press and flyers to alert the local population to the survey. We also mobilised local voluntary groups, our NHS partners and the local media, including BBC Radio Essex, to help spread our message. See Appendix ii for details of our survey promotion methods.
3.1.1.2 Focus group interviews
Focus group interviews with members of three cancer patient groups in Colchester were conducted. These were for Lymphoma, Urology and GI (Gastrointestinal) cancers. We anticipated that the experiences we would gather from focus group participants would differ, and they would add a different dimension to those experiences gathered via the survey and through one-to-one interviews. What we hoped to capture was the ‘group’ experience, i.e. what being in a group means to those undergoing cancer treatment and to their carers.
Focus groups are a form of group interview, which benefit from the communication between members of the group and the researcher, and allow for a group interaction on the topic. Participants are encouraged to talk to one another, ask questions, exchange anecdotes and comment on each other's experiences and points of view. ‘The method is particularly useful for exploring people's knowledge and experiences, and can be used to examine not only what people think but how they think and why they think that way’ (Kitzinger, 1995). In the case of the three support groups chosen, because they were already in existence, we were also able to capture the group dynamic and, in particular, establish how group membership shaped the experiences of living with cancer, supporting those with cancer, and being supported while undergoing treatment and care.
We were helped to gain access to these groups by Louise McAvoy, the Macmillan Involvement Co-ordinator for the East of England, who made initial contact with the groups’ Chair, asking whether they would be interested to hear more about our study. Once we or Louise received positive replies, we spoke with the Chairpersons and sent copies of the participant information sheets to them for distributing to group members. In two cases (GI and Urology), one of the researchers was invited to attend a patient group meeting in order to explain the project and to recruit volunteers for the focus groups. All participants were Page 56 of 230 12 given consent forms in advance and asked to sign them prior to the interviews. Two of the groups held their regular meetings at rooms in the grounds of the hospital, and cancer nurse specialists attended the meetings of all three groups.
Our focus group meetings were held in village/church halls in the Colchester vicinity. Some of the members lived a distance from Colchester, and at least one member lived in the neighbouring county of Suffolk. Our focus group sample was a ‘convenient’14 one, as this fulfilled the objectives for this part of the study.
3.1.1.3 One-to-one interviews From our survey respondents who expressed a willingness to take part in one-to-one interviews, a sample of 16 participants were selected. Of the 16 interviewees, eight were patients (and in three of these interviews, other family members/carers were present and contributed) and eight participants were carers; one of these was a son, one a daughter, one a set of parents, and five were spouses of cancer patients.
We chose our sample primarily on the basis of respondents’ satisfaction levels with cancer treatment, care and support received at Colchester Hospital, as indicated by their survey responses to those specific questions. Of the 16 interviewees in the sample, four were very/extremely satisfied, nine were dissatisfied/not very satisfied, and the remaining three were satisfied and/or had given mixed responses in the survey e.g. ‘satisfied’ with treatment but ‘not very satisfied’ with the care and support provided. We would like to stress here that the sampling criteria was not a representative one but a purposive one.15 Firstly, we wanted to hear from as many carers as patients, in acknowledgement of the important role paid by carers; and, secondly, we recognised that some patients would have passed away and we wanted those stories to be heard. Furthermore, we wished to elicit the ‘lived experience’ of those who were less than satisfied, in particular to explore their experiences of problematic issues and to make recommendations accordingly.
All of the 16 participants were white. An even split of women and men were interviewed; eight women and eight men. Participants were selected from across the life course; the youngest was in the 1625 age group, one was in the 2635 age group, two were in the 3650 age group, four were in the 5165 age group, seven were in 6675 age group, and one was in the 75+ age group. Although we did not collect information on social class, we tried to select from a range of postcodes in an attempt to obtain a broad socio-demographic range.
14 Convenience sampling is a non-probability type of sampling technique commonly used for focus group interviews where subjects are selected because of their convenient accessibility and proximity to the researcher (Steward & Shamdasini 2014). 15 A purposive sample is a non-representative subset of some larger population, and is constructed to serve a very specific purpose (Patton 1990). Page 57 of 230 13 Following a preliminary analysis of the survey and focus group data, a topic guide (see Appendix iii) was developed to ensure that themes previously identified were covered during the interviews.
3.2 Ethics
Ethics approval for the study was granted by the Research Governance Group at Essex County Council (see Appendix iv). Given that Healthwatch Essex has legislative powers to gather patient experience, this was considered to be an evaluation review study and was assessed accordingly. The following measures were taken to minimise any potential harm to participants that could arise as a result of their participation in the study:
3.2.1 Confidentiality/anonymity
To maintain anonymity as far as possible, only survey respondents willing to participate in an interview were asked to provide their name and a contact telephone number or email address. Pseudonyms were assigned to all interviewees, as well as doctors and hospital staff. However, where individual staff members were highly praised, we have left in their original names. Care has been taken to mask, as far as is reasonable, any potential identifying aspects within the patient and carer narratives when presenting findings for publication and dissemination. Any sensitive (identifiable) data has been password protected and all data securely stored in compliance with the UK Data Protection Act. 3.2.2 Participants’ welfare
All one-to-one interviews were conducted by an experienced qualitative health researcher (Nicky McGuinness) who has expertise in conducting interviews on sensitive topics. Interviews were conducted in the comfort of people’s own homes, although alternative arrangements were offered if preferred by the participant. In the event of participants being upset in recounting their experiences, the researcher provided Macmillan cards, containing national telephone helpline numbers. Participants were also informed in writing and verbally that the study was being conducted by an independent body, and that participating in the interview would not negatively impact upon their healthcare or treatment. Focus group interviews were convened by two experienced researchers (Oonagh Corrigan and Nicky McGuinness) and all participants were asked to keep confidential anything shared by others in the group during the interviews. Page 58 of 230 14 3.2.3 Informed consent
Presumed consent was obtained for survey participation, information about the study was provided in advertising materials and at the top of the survey forms. Explicit, prior and written informed consent was obtained from those who participated in focus groups and one-to-one interviews. All associated documentation (including information sheets and consent forms) were granted ethics approval by Essex County Council’s Research and Evaluation Support Group.
3.3 Quality assurance
16 3.3.1 The Research Team
The study design was carried out jointly by Dr. Oonagh Corrigan and Dr. Tom Nutt. The collection and analysis of interview data was conducted by Nicky McGuinness and Dr. Oonagh Corrigan. An additional contract researcher, Dr. Nina Hallowell, was commissioned to undertake qualitative analysis of the one-to-one interviews.17 The survey data was analysed by a Healthwatch Essex ‘Research Ambassador’, Duncan Wood. Further work, such as making data anonymous, and assisting with analysis and administration, was carried out by Sarah Haines, Information & Policy Officer for Healthwatch Essex.
A steering group was established to monitor the study’s progress, to help ensure protocol, design and timetables were adhered to, to support the smooth running of the project by offering advice as appropriate, and to support the dissemination of findings. The steering group was composed of the following members:
1. Dr. Oonagh Corrigan, Commissioning & Research Manager, HWE. 2. Nicky McGuinness, Contract Researcher. 3. Ken Aldred, Patient Representative. 4. Dr. Ewen Speed, Senior Lecturer, University of Essex, School of Health & Human Sciences. 5. June Warbuton, HWE Strategic Body Member. 6. Louise McAvoy, Macmillan Involvement Co-ordinator for the East of England. 7. Sarah Macleay, Macmillan Involvement Co-ordinator for the East of England. 8. Sarah Haines, Information & Policy Officer, HWE.
Steering group meetings were held monthly between April and July 2014 (the four months of data collection and analysis) and a fifth meeting was held in September to review the final draft of the report.
16 See Appendix v, for biographical summaries/research credentials of the team. 17 See Appendix vi, for details of the interview analysis methodology. Page 59 of 230 15 4. Analysis and Results
We present our survey, focus group and patient/carer interview analyses in three separate sections (4.1, 4.2 and 4.3). Not only does this reflect the order of data collection but it demonstrates clearly how themes are connected and are built up as more in-depth data is gathered. 4.1 Survey analysis
A total of 172 people responded to the survey. This compares well to the 329 people who contacted the much publicised hospital helpline set up in November 2013, for three months, by the Trust in response to the CQC inquiry (Colchester Hospital University Foundation Trust, 2014). Two thirds of those responding to the survey were patients and one third were carers.
The main strength of this study lies in the qualitative data that captures the lived experiences of survey respondents. Ninety-one people responded to our free text questions. Of these, 25 people were dissatisfied with treatment, care and support; 61 were satisfied with their treatment, care and support and a further five were mixed, i.e. satisfied with treatment but not with care and support or vice versa. The free text questions included invitations to provide more information about cancer care, treatment and support, whether they felt their views were listened to by doctors and nurses at CHUFT, and whether, on feeding back any issues, these were responded to appropriately.
In this section the findings have been organised thematically, with selected quotes from survey respondents included so as to illustrate our findings. Themes were identified by systematically categorising and coding what we perceived to be the main topics to emerge from the text.18 We found that our closed questions, which were analysed using appropriate statistical methods of analysis, largely support our qualitative analysis, and we draw on these to illustrate and strengthen our qualitative data findings (for a full copy of our quantitative report see Appendix vii). 4.1.1 Experiences of care
Most respondents (68%) reported that they were satisfied with patient care. Of the 32% who were not satisfied, more than half gave the lowest possible satisfaction scores. However, these figures should be treated with some caution. As we report later, during follow-up interviews respondents who gave good satisfaction ratings in the survey often reported some aspects of care that were poor, but, because the clinical outcomes for those
18 Thematic analysis involves the systematic categorisation and coding of transcript data whereby the main topics/ideas to emerge are identified (Guest, MacQueen & Namey 2012). Page 60 of 230 16 patients were good, experiences of poor care were more easily overlooked. It is worth noting that a large proportion of respondents had both praise and criticisms for aspects of their treatment and care, regardless of whether they were more generally satisfied or dissatisfied.
There was some variation in levels of satisfaction with care depending on cancer type (see Table 1). While these differences are not statistically significant, given the small numbers for some types of cancer, those respondents with cancer types that reported lower satisfaction levels do tend to correspond to those identified by the CQC. It is also worth noting, that, on the whole, satisfaction levels for care were lower than they were for treatment (compare with Table 2).
Table 1: Satisfaction of all respondents with care, by type of cancer
Type of cancer % satisfied Base number Brain / central nervous system 0% n = 2 Breast 80.6% n = 36 Colorectal / Lower GI / bowel 69.2% n = 26 Gynaecological 66.7% n = 12 Haematology and lymphoma 77.8% n = 9 Head and neck 66.7% n = 6 Lung 63.6% n = 11 Urology, prostate, etc. 66.7% n = 36 Skin 83.3% n = 6 Upper GI 75% n = 8 Sarcoma 50% n = 2 Other 40% n = 10
4.1.1.1 Quality of nursing care: empathy, compassion, dignity and respect
Respondents discussed the importance of staff treating both patients and their carers empathetically, with dignity and respect. Individuals reported incidents where they had experienced particularly good compassionate care, or, at the other end of the spectrum, particularly poor care. The quality of nursing care had the power to remain vivid in people’s recollections long after the event, and this appeared especially so in cases of end-of-life care.
The sisters, students, HCAs, Macmillan nurses – everyone supported us as a family and her. They helped her keep her dignity; they took time to get to know her as an individual. (94, Carer of lung cancer patient, survey19)
19 Given that the survey did not ask for respondents’ names, we refer to their survey number rather than assign pseudonyms. Also in order to distinguish those who responded to the survey alone, we use the term ‘survey’; and for those who were interviewed subsequently, we refer to them additionally as ‘interviewed’. Page 61 of 230 17 I received excellent care from all the medical and nursing staff who kept me informed at all stages and were caring and considerate at all times. I also felt that I was dealt with with dignity and care at a very vulnerable and frightening time. (141, lower GI cancer patient, survey)
In cases where staff were perceived to lack sensitivity and/or empathy with their patients, this had a detrimental impact on how patients experienced their care and could result in them feeling unimportant and that they were being cared for in a basic, perfunctory way. In particular, there were comments relating to how the age of the patient could negatively impact on the quality of the care they received:
I felt I was a nuisance because of my age [90 years]… the first locum consultant was okay but the second one I saw was very rude [and] unhelpful, and made me feel I was not ‘important’ enough to worry about. He upset me a lot. He was too young to know how a person feels. (168, Urology cancer patient, survey)
We were kept pretty much in the dark during her hospital stay. We got the firm impression that no-one was interested in her, probably because of her age. She was not treated with any respect or decent level of care whilst in hospital. (131, Carer of undisclosed type of cancer patient, survey)
My husband had radiotherapy to his brain and had to wear a mask which was pinned to the bed, which was very uncomfortable. He then had to listen to the staff having a chat about lunch breaks and tea breaks rather than actually delivering the radiotherapy, and then they laughed when he complained. Not really the way to treat someone with a terminal illness. (153, Carer of lung cancer patient, survey)
4.1.1.2 Reassurance
The factor most frequently stressed by patients and carers as being central to their experience was the desire to feel reassured throughout their treatment (and in the follow- up period) that everything that should and could be done was being done:
I should have been kept under the care of the oncology team and not left… I have been advised I should be followed up for five years. When I asked if I should have a follow-up CT or MRI [scan] I was told “you are well and why look?” Surely I should be reassured the primary [cancer] has not finally shown itself. I still experience discomfort in my scar but am told not to worry. (147, Skin cancer patient, survey)
4.1.1.3 A caring place
Respondents also reported receiving better or worse care at different sites. Care at the Essex County Hospital site was perceived by some respondents to be of a higher quality than that at the Colchester General Hospital site.
The care at the Cancer Ward at the old Essex [County] Hospital was superb and my late wife always felt safe there. However the care at Colchester [General] Hospital
Page 62 of 230 18 was abysmal. Apart from a couple of really caring nurses, the staff were, or seemed to be, totally disinterested, they lacked any sort of empathy or understanding of the pain their patients might be suffering and, worse, they did not seem to want to put themselves out to administer the painkilling drugs. (120, Carer of lung cancer patient, interviewed)
The Mary Barron suite received an exceptionally high level of commendation across the research. The suite was described in a variety of very positive terms, such as providing ‘exemplary’ and ‘professional’ care:
The cancer unit at Essex County Hospital wards, the radiology [department] and Mary Barron suite, were all excellent in every way. I am sorry they are moving as I feel the personal approach, so necessary, will be lost. The General Hospital did not seem to have the same care or understanding. (167, Carer of urology cancer patient, survey)
Mary Barron suite staff were simply the best; kind, caring, full of smiles and laughter, as well as compassion, informing me all the way of what was going to happen. (127, Male lymphoma patient, survey)
The staff on the Mary Barron suite made me feel that the experience I was going through was important and that they would give time for my enquiries and concerns… having radiotherapy could have been a daunting time, but the consideration of the staff was amazing. They knew that every word they said had to be positive and encouraging. I was impressed by their professionalism and how they focused on the patient. Having the treatment every week became normal and nothing to fear. (85, Female breast cancer patient, survey)
This was not however a universal finding, with other respondents stating that treatment, care and support across both sites were of an equally high quality:
The treatment at Colchester General Hospital was first class from start to finish during my 12 day stay. The follow-up afterwards was and still is first class. Everyone was so kind and understanding, from consultants, doctors and nursing staff, right down to the tea ladies. This applies to the staff at Colchester General Hospital and Essex County Hospital. (166, Bowel cancer patient, survey)
4.1.1.4 Confidence inspiring care
In cases where respondents felt satisfied with their care (and treatment), the concept of feeling confident in the medical staff was expressed. Feeling confident in the staff meant that patients felt certain that they were receiving the right care and at the right time:
Each time I needed treatment, it was there. All the staff from [the] surgeons to the nurses inspire confidence. (157, Breast & gynaecological cancer patient, survey)
Page 63 of 230 19 4.1.1.5 Macmillan support
Respondents discussed how they had received support through the Macmillan Centre at the hospital. This support was described in terms of being very useful in guiding them through their cancer journey. In cases where respondents felt dissatisfied with NHS staff, this gap was often perceived to be bridged by Macmillan ‘coming to the rescue’:
It was only when my husband and I spoke to our local Macmillan team on the ‘off chance’ did we finally put our fears, etc., to people who listened and guided us. Thank goodness for Debbie Farthing at Essex County [Hospital] and her team. (163, Carer of gynaecological cancer patient, survey) 4.1.1.6 The role of the specialist nurse
The role that specialist nurses played was highlighted by many respondents, mainly in relation to the invaluable reassurance and support that they provided. Particular emphasis was given to how they could be relied upon to reply to messages and get back to patients within a given timescale:
My breast care nurse went beyond the call of duty to keep me informed and was always at the end of the telephone should I have needed her. She is certainly an asset to the nursing profession and a lovely lady. (30, Breast cancer patient, survey)
The only criticisms raised by some were that the contact hours were inadequate and this could result in having to leave answer phone messages and wait for a response. This was felt to be especially problematic if seeking emergency advice:
When seeking telephone advice, the nurse was never available and I had to leave an answer phone message. Fortunately, I did not need emergency advice. (143, Breast and urology cancer patient, survey)
In cases where respondents were not in touch with a specialist nurse, there was a feeling that they were missing out on a valuable potential source of support.
4.1.1.7 Understaffing
The issue of understaffing was frequently mentioned across the survey and this tended to be in relation to how well, or not, care needs had been met. Examples of situations where it was felt that understaffing caused poor nursing care included: taking a long time to get things cleaned up; nurses saying they would be back shortly then not returning; nurses refusing patients pain relief as they did not have time to administer it; and buzzer response times being very slow (or buzzers not being responded to at all). Some respondents also reported that their discharge from hospital was rushed, and that once they were technically discharged they were left to fend for themselves:
Page 64 of 230 21 …although the nurses were doing their best, they were handicapped by being so short [staffed]. One day and night, for a 16 bed part of the ward, only one nurse was on duty and I had to wait well over an hour for my fluids to be replaced… my family quite often had to empty my two waste bags as they became full and there were not replacement bags available. (130, Male bowel cancer patient, survey)
Some of the doctors during the chemotherapy time seemed to be overworked and, in meetings with us, were reading up the notes during the meeting. (85, Female breast cancer patient, survey)
After the surgery, nurses on the ward were not helpful; they assumed I was all right and managed on my own. I think they were understaffed. (52, Female breast cancer patient, survey) 4.1.1.8 Communication
The quality of communication between health care professionals and patients can have a positive or negative impact on patients’ experiences of both treatment and care. However, from the perspective of professional practice, good patient-centred communication is considered to lie more directly in the domain of care and so it is discussed in this section. A large proportion of the written survey comments were about patients’ and carers’ perceptions of the quality of communication within the hospital. Respondents stressed that clear good quality information, personalised to the individual, was a key factor contributing to high satisfaction levels.
Everything was explained as we went through the treatment process and I always felt empowered to ask questions. (145, Breast cancer patient, survey)
From the time of being diagnosed, all questions were answered, in depth and scientifically, when my husband asked questions…. my husband processes information with his work scientifically, and consultants and nursing staff gave us information at the level my husband required. We were able to research further. (69, Breast cancer patient, survey)
A critical aspect of the relationship between patients and their carers was the degree to which patients felt informed and involved in the decision-making process about their care. Respondents discussed the importance of all the possible treatment options being clearly outlined so as to empower individuals to make choices that were right for them:
He and his team of nurses and radio-therapy staff treated me with dignity and compassion at all times, and made myself and my wife feel that we were members of a team working to a common goal. (17, Patient with multiple types of cancer, survey)
Negative comments about the nature of communication between clinical care staff and patients included discussion about how sensitively, and in what manner, patients were communicated with (i.e. face to face, over the phone, or by letter) and the content of the
Page 65 of 230 20 communications (i.e. the accuracy and quality of the information given to patients over how advanced the cancer was and their prognosis for the future).
Patients reported their desire to be informed about the full range of support available, including psychological support. This need for information extended across the duration of their contact with the hospital. For example, respondents discussed how they would have liked to have been informed about support that was available post-treatment. Carers, as well as patients, expressed their need to be kept fully informed about the support options open to them.
4.1.1.8.1 Breaking bad news
A key theme to emerge around communication was how well, or not, patients and their carers had received a cancer diagnosis. Unfortunately, a number of examples of poor practice were given. At the core of the complaints was the feeling that the news had been delivered insensitively; for example, when it was not delivered in a professional and compassionate manner. Respondents also critiqued the level and clarity of information they had been given and, in one particular case, that the diagnosis had been so vague that the patient had been left unaware that they had just received a diagnosis of cancer:
We were told the diagnosis with the doctor standing, mumbling and fiddling with notes. We had to ask questions to get a full description… my son had no idea what was happening and when the doctor left the room I said ‘oh dear, no good news then’. He asked why and I had to tell him that it was a type of cancer. He was shocked. (123, Carer of sarcoma cancer patient, survey)
Along with the manner and clarity in which diagnoses were given, the mode in which the information was conveyed was also considered important, with face-to-face delivery being respondents’ preferred option. In one case, a patient had been given the diagnosis of cancer over the phone when they were alone at home, and this was felt to be inappropriate:
I was just given a leaflet and asked to call the number for any questions, as the cancer nurse was not in that day – that is how I was told I had cancer. No back up. I did call the next day and spoke to an answer phone – no one called me back. I called again and it was a joke. Eventually someone called me and said what do you want to know? (149, Urology cancer patient, survey)
4.1.1.8.2 Communication between departments and with GPs
Communication between departments was sometimes felt to not occur as quickly as it should. Others reported how communication between the hospital and their GP surgery, including linking up with the district nurse system, was not always as efficient as it could be. Examples given were of the hospital not informing GPs that patients had been diagnosed with cancer, or that they had been in hospital and would require ongoing clinical treatment via the GP surgery.
Page 66 of 230 22 4.1.1.8.3 Who to ask?
Respondents reported incidents where they could not get answers to their queries about their treatment. In such cases the patients concerned did not have a ‘key contact’ or nurse specialist to get in touch with, and the outcome tended to be that they were passed from one staff member to another without obtaining the answers and reassurance they were looking for. 4.1.2 Experiences of treatment
Compared to reported levels of satisfaction with care and support, levels of satisfaction with treatment were a little higher, with 74% of respondents reporting they were satisfied. There is also some apparent variation in satisfaction with treatment by type of cancer (see Table 2). Due to the sample size, some of these statistics are non-generalisable.
Table 2: Satisfaction of all respondents with treatment, by type of cancer
Type of cancer % satisfied Base number Brain / central nervous system 0% n = 2 Breast 83.3% n = 36 Colorectal / Lower GI / bowel 65.4% n = 26 Gynaecological 75% n = 12 Haematology and lymphoma 88.9% n = 9 Head and neck 100% n = 6 Lung 72.7% n = 11 Urology, prostate, etc. 75% n = 36 Skin 100% n = 6 Upper GI 87.5% n = 1 Sarcoma 50% n = 2 Other 40% n = 10
4.1.2.1 Medical complications and side effects
In cases where side effects and/or complications arose during patients’ treatment, there were reports that treatment could start to feel somewhat chaotic. This was experienced as being very stressful for patients and carers at a time when they wanted to feel reassured that they, or the person they were caring for, were receiving the best possible care. Concerns were often heightened in cases where it was also felt that the patient’s views were not being heard and taken into account in their care and treatment:
When the side effects of the treatment and complications started, the doctors and consultants involved were out of their depth and did not know what to do… she continued to be sick over two months and they kept sending her home after a four or five day stay only for her to be readmitted again within 24 hours with the same problem that was never resolved… they did not listen to me or her when she tried to Page 67 of 230 23 explain her side effects and vomiting. (81, Carer of a gynaecological cancer patient, survey, interviewed)
In a few cases, patients reported that they had been misinformed about their cancer. In one instance, a patient and her relatives were informed that she did not have cancer, but were subsequently told that a mistake had been made and that unfortunately she did. Other examples of incorrect or poor quality information being given included a case of a patient being told that, following a course of chemotherapy, the cancer ‘was gone’, only to be then told by other consultants that it was a ‘stage four’ cancer that was always going to be terminal. Further examples of poor communication involved patients being informed that test results ‘were not back’, to later find out that they had in fact been received; and incidents where patients’ families only found out about a patient’s cancer diagnosis, or the extent of the disease, after the patient’s death. Such incidents could leave individuals feeling that information had been deliberately withheld from them, seriously lowering their trust in cancer services at the hospital:
We were initially told, after the first lot of tests, that she didn’t have cancer, then told that, unfortunately, she did and [they] apologised for the mistake…. after asking on more than one occasion what the results of her latest MRI scan was, we were repeatedly told that the results weren’t back. After speaking to a very inexperienced nurse one evening, she admitted there [were] large amounts of shadowing on her scan results and that the doctors had known this for a while. We were lied to and then told in a walkway in the middle of the ward that she was dying. (128, Carer of lung cancer patient, survey)
4.1.2.2 Patients with co-morbidities
In instances where cancer patients had other conditions, such as diabetes, respondents expressed concern about a lack of integrated care and treatment. For example, a patient with diabetes described her bewilderment as to why a diabetic specialist doctor was not part of her treatment team rather than just being involved on an ad hoc basis during her treatment. Such omissions created the impression that treatment and care was reactive rather than being streamlined and truly patient-centred. The same patient reported how she had requested an early morning appointment due to her diabetic status. These details were not added to her appointment request form and the patient then received an inappropriate appointment time, which had to be rearranged. In this situation, the lack of responsiveness to the patient’s requests resulted in further administrative work, and introduced the possibility of delayed treatment.
4.1.2.3 Emergency admissions
When patients were admitted to hospital in emergency situations, especially at weekends and/or during holiday times, this was reported repeatedly in terms of low satisfaction levels with the quality of treatment and care received. A number of respondents reported being
Page 68 of 230 24 admitted to A&E. One cancer patient was admitted to A&E after having a fall at home and spent two days on a busy Emergency Assessment Unit (EAU) ward because a bed could not be found. Other respondents reported feeling vulnerable and/or that they were in a clinically hazardous environment:
I was admitted through A&E and onto the assessment unit… this experience was frightening and unsafe. I never want to be there again… having a cancer diagnosis is very frightening; the staff on the EAU were uncaring and did not follow procedures… I had to remind some staff to gown up and put on gloves. Sharps [needles] were left on my bedside table… one nurse I asked to put on her gloves before she looked at my PICC line [catheter] site, then proceeded to sigh pointedly and treat me roughly. (150, Gynaecological cancer patient, survey)
I took myself to A&E one Saturday afternoon where I was received quickly and courteously… the treatment by the nurses from then on was poor and degrading. One nurse in particular spoke at the top of her voice about my treatment so that the whole of A&E must have heard her and she sounded angry. She left me for about an hour on the bed… nobody, young, old, fit or poorly, should be spoken to so aggressively and rudely or be left unattended for so long. (143, Breast and urology cancer patient, survey)
4.1.2.4 Problems with appointments
A range of problems relating to administration were reported. It is worth pointing out that complaints about clerical systems were forthcoming both from respondents who were dissatisfied and from those who were satisfied with their treatment, care and support. There were a high number of reported problems with ‘appointments’ in particular. One type of problem was that of appointments for procedures being made for patients which were not appropriate. For example, in one case a patient was attending for a planned biopsy; she was prepared for the procedure, but upon meeting the consultant who was due to perform it she was informed that, after reviewing her notes, he had decided he could not carry out the procedure. This was very frustrating and stressful for the patient and had a knock-on effect on subsequent appointments and in the patient’s overall treatment.
A further problem noted in the survey responses was that of appointments repeatedly being cancelled, and the anxiety, frustration and sense of disappointment this caused to patients and their carers:
My husband is supposed to have regular check-ups… every time he has an appointment come through to see a specialist it gets cancelled; this has happened on numerous occasions… it will now be four months without a check-up. (99, Carer of skin cancer patient, survey)
Cases were also reported of patients attending appointments, and medical staff referring back to treatments detailed in the patient’s medical records that had never taken place:
Page 69 of 230 25 I did not receive a mammography until this year although I was told to expect one a year after the operation. When I had a mammography this year, the nurse was under the impression that I had one last year. (143, Breast & urology cancer patient, survey)
A reoccurring complaint concerned the need to chase test results and/or follow-up appointments. Respondents discussed having to make multiple enquiries in order to obtain outstanding test results and to get appointments scheduled that should have been sent through to the patient. There were a number of cases of patients chasing up follow-up appointments to be informed that they had ‘been missed’ or ‘forgotten about’:
I do feel I needed to keep chasing, which although [I’m] quite able…I do not think the admin is as good as it should be, as someone in my situation may not have chased up, with unfortunate consequences. (111, Breast cancer patient, survey)
The gentleman involved should have had a follow-up appointment but all records of his condition were laid aside and forgotten until his carer contacted the hospital and asked why his appointment had not arrived. They said they had forgotten all about his appointment. (129, Urology cancer patient, survey)
A number of respondents reported that referral documents had been mislaid. In one case a patient was informed that she had been referred for counselling. However, after a few weeks had passed and she had not heard back, she was informed that the referral paper had been mislaid.
4.1.2.5 Timescales
Timescales were a key concern for patients and carers throughout their cancer journey; from diagnosis, to treatment, and through to follow-up aftercare. It was critical to patients’ satisfaction levels that they felt that their treatment was progressing in a timely fashion. In cases where patients believed their treatment was administered without delay, they tended to report higher levels of satisfaction:
I was very happy with my treatment – largely, I think, because it was so quick. (71, Breast cancer patient, survey)
I never felt at any time that they were dragging their heels – the process just seemed to gain momentum, from ultrasound/biopsies through to mastectomy, chemotherapy and radiotherapy. Clinic appointments have also been in the same vein and now I am going through breast reconstruction, the experience has been just as positive. (145, Breast cancer patient, survey)
The follow-up information was given to me speedily, and the good news that the tumour hadn’t broken through and I was technically safe was telephoned to me immediately when they knew. I have since had further X-rays and a CT scan exactly when they said I would, a year later. (140, Urology cancer patient, survey)
Page 70 of 230 26 A number of cases were reported of participants feeling that the diagnosis process had taken an unreasonable amount of time. For example, in one case a respondent outlined how it had taken several months and a number of ‘clear’ biopsies (but continuous symptoms) before the cancer was discovered two weeks after an operation to remove a major organ (when an autopsy of the organ was performed). In other cases, patients and carers felt that urgent referrals to the hospital from their GP were not, in fact, treated as such, and that unacceptable time periods passed before treatment commenced. One patient with bowel cancer felt that once his GP had made an assessment that it was necessary to have a colonoscopy, the time taken to have it took too long. Due to the hospital processes, various other tests had to be carried out first, which meant there was an undue delay.
Two week guidelines worked – but you can easily lose two months that way. (105, Bowel cancer patient, survey)
The survey included one incident where a patient felt that the wait for him to get an initial appointment was too long, so he decided to obtain private medical care. In doing so, in a three-month time period, he received consultations, scans, biopsies, test results and treatment recommendations, all before the NHS appointment had even come through.
In cases where respondents reported feeling satisfied with their treatment, they tended to highlight their sense of how quickly treatment had progressed following diagnosis. In contrast, respondents who were less satisfied with their treatment reported that they felt that their treatment had taken longer than it should. Examples of treatment taking too long included excessive time periods for diagnosis that their cancer had spread and/or returned, for being given medication, and for not having operations scheduled:
I was left too long before they operated on me. My cancer had grown… (160, Urology cancer patient, survey)
Unfortunately she died without any treatment. Our issue was with the delay in discovering that the cancer had returned. She could have been treated six months earlier, before the cancer had chance to spread. (148, Carer of urology cancer patient, survey)
Treatment timescales were also discussed in relation to emergency admission situations, i.e. how the assessment, booking in and transfer to wards could be a particularly slow process. In some cases it was felt that unduly long waits for appropriate treatment resulted in poorer than necessary outcomes:
When my husband was admitted on a Sunday morning, I was extremely disappointed with the delays…my husband died later that day in the emergency assessment unit… I and others still feel that my husband would not have died so quickly with more appropriate care. (138, Carer of lung cancer patient, survey)
Page 71 of 230 27 There were a number of reports of patients and carers feeling dissatisfied with the amount of appointment time given to them, resulting in it proving difficult to have a meaningful interaction with clinical staff, especially consultants. In such cases it was felt that there was only enough time to discuss immediate matters, rather than more general questions and concerns. In contrast, when respondents felt satisfied with their treatment and care, they tended to mention being able to discuss matters in an unhurried fashion. A further issue in relation to timescales was that of having long waits in the waiting room for appointments.
4.1.3 Were views or experiences listened to?
Overall, 77.2% of respondents felt listened to (n = 101). However, caution should be taken in interpreting this statistic, as not all respondents answered this closed question and most of those who did not, had chosen to submit free text responses. Table 3 (see below) shows the percentage of respondents who felt listened to, by the type of cancer they or the person they cared for had. Given the range and small size of most categories, these differences are not statistically significant, but, of the larger groups, breast cancer stands out as showing a particularly high score, and, conversely, upper and lower gastrointestinal (GI), and ‘other’ non-specified cancers, stand out as showing relatively low scores.
Table 3: Felt listened to, by type of cancer
Type of cancer % feeling listened to Base number Brain / central nervous system 100% n = 1 Breast 90.9% n = 22 Colorectal / Lower GI / bowel 68.4% n = 19 Gynaecological 100% n = 7 Haematology and lymphoma 75% n = 8 Head and neck 83.3% n = 6 Lung 71.4% n = 7 Urology, prostate, etc. 78.3% n = 23 Skin 80% n = 5 Upper GI 66.7% n = 6 Sarcoma 100% n =1 Other 50% n = 4
63% of those who felt listened to agreed to take part in interviews (n = 77), compared to 55% of those who had not felt listened to (n = 20).
Table 4 (see below) shows that there is a dip in ‘feeling listened to’ for the 6675 age group, though this might be just a random sampling variation, given the small sample.
Page 72 of 230 28 Table 4: Felt listened to, by age group
Age range % who felt listened to Base number 1625 100% n = 1 2635 100% n = 3 3650 81.8% n = 11 5165 81.6% n = 38 6675 61.9% n = 21 75+ 89.5% n = 19
4.1.3.1 Being heard
Where respondents reported feeling satisfied with their care and support, this tended to be closely linked to them feeling that they were listened to by the hospital. Numerous examples were given of what ‘being listened to’ meant, including staff making time to just sit and chat with patients:
I now go back to the hospital every three weeks for my Herceptin, and even though the girls are very busy they still find time to sit and check I am coping okay… even though they are very busy, if you need to talk they would listen, which means a lot. (170, Breast cancer patient, survey)
In some cases respondents felt they had not been given as much information as they should have been given about treatment options open to them and/or about why certain courses of action were being recommended to them. This left them feeling that their views were not important. Of those patients and carers who reported concerns to hospital stuff, some described how they did not feel listened to when doing so. Respondents detailed how, when they did express views, staff could appear disinterested and only had very limited time to actually listen. Some respondents felt that appropriate clinical responses to concerns had not been given and felt worried that this could have resulted in treatment delays:
The clerical support staff let the service down by not listening to me as the cancer grew and grew until it was touch and go if it would be possible to cut it out. (102, Skin cancer patient, survey)
Some of the junior doctors were very helpful but, with exception of one or two nurses, I couldn’t find anyone that was even vaguely interested in my and, more importantly, my wife’s views. (120, carer of lung cancer patient, survey, interviewed)
Patients who reported in the survey that they had fed back issues to the hospital, whether positive or negative, did not always know what would happen to their feedback, or how their comments would be dealt with. For example, in the case of discharge feedback forms:
I don’t know what happens to the feedback forms… I filled mine in on an iPad, so do not really know if it reached its ‘target’ even. (141, Bowel cancer patient, survey)
Page 73 of 230 29 4.1.4 Responses to patient and carer feedback
Respondents were asked if they had fed back an issue and, if they had, whether they felt it had been appropriately dealt with. Overall, 67 people said they had fed back an issue. Of these, 49% said the issue was dealt with appropriately. Some who did not feedback comments provided a range of reasons in the free text section of the survey for not doing so, and these included:
being fearful that complaining would impact negatively on their future care and treatment; not feeling well enough/being too upset to complain; being unaware of the right to complain and/or lacking the knowledge about feedback/complaint options; and feeling that making a complaint would be a waste of time as it would not be listened to or acted upon.
As a patient you feel you do not want to be labelled a complainer and [you] worry it might affect your treatment. (107, Upper gastro intestinal cancer patient, survey)
I have not put this in as a complaint as I was afraid that, if I did have to go [down] this route again, I would meet those who I had complained about. (150, Gynaecological cancer patient, survey)
Overall it would appear that where patients and carers would have liked to have voiced their opinions but did not do so, this was due to their feeling vulnerable and/or a lack of wellbeing, knowledge, or confidence in the system.
In response to this question, some respondents reported matters that were still outstanding. For example, people were told that they would receive a response within a two-month period, only to be still waiting to hear back months later. Levels of confidence in feedback systems appeared to be generally low, and there was a perception by some that hospital staff were somewhat disinterested in feedback, and did not appreciate criticism and would defensively ‘band together’ against it.
Table 5 (see below) shows respondents’ views on whether feedback was appropriately dealt with, by type of cancer. Again, it should be noted that the base numbers are small and that little statistical reliance can therefore be placed on these comparisons.
Page 74 of 230 31 Table 5: % saying they fed back an issue and it was appropriately dealt with, by type of cancer
Type of cancer % saying dealt with Base number appropriately Brain / central nervous system 100% n = 2 Breast 66.7% n = 12 Colorectal / Lower GI / bowel 46.2% n = 13 Gynaecological 57.1% n = 7 Haematology and lymphoma 50% n = 4 Head and neck 25% n =4 Lung 71.4% n = 7 Urology, prostate, etc. 57.1% n = 14 Skin 33.3% n = 3 Upper GI 33.3% n = 3 Sarcoma 0% n = 1 Other 20% n = 5
Table 6 (below) shows respondents’ views on whether feedback was appropriately dealt with by the organisation to which views were fed back. Again, the differences in this table are not statistically significant, so they could just be due to random sample variations, but perhaps the main conclusion to draw is that, overall, no organisation received a rating much above 65%, with several below that level.
Table 6: % saying they fed back an issue and it was appropriately dealt with, by organisation fed back to
Organisation % saying dealt with Base number appropriately PALS 21.4% n = 14 Hospital Complaint Services 0% n = 1 Macmillan Cancer Support 65% n = 20 North East Essex Cancer User 50% n = 2 Group Hospital Governor 100% n = 1 Your GP 42.3% n = 26 Voluntary or Community Group 66.7% n = 3 Patient Opinion or Other Sites 50% n = 4 Other 49.3% n = 67 Note: These categories are not mutually exclusive.
When it came to respondents’ willingness to be interviewed as part of the research project, 80.6% of those who felt their feedback had been dealt with appropriately (n = 31) were willing, compared with only 63.6% (n = 33) of those who felt their feedback had not been dealt with appropriately. Thus, it seems likely that, having previously made an unsuccessful effort to improve services, this deters people from making further attempts.
Our survey data presents a mixed picture of patients’ and carers’ experiences. Nevertheless, key themes have emerged that inform us about patients’ and carers’ needs, values and preferences. While all are individuals, and welcome being treated as such, a key consensus Page 75 of 230 30 emerged around patients wishing to be treated with care and dignity, as well as the need to appreciate that they often feel vulnerable and need to be reassured throughout their cancer journey. Our survey data also suggest that patients and carers felt their views and concerns were not always being listened to, and, furthermore, a number who had cause to complain or provide critical feedback did not do so because they felt afraid, vulnerable or had lost trust in the system and felt that complaints would not be heard and acted upon. 4.2 Focus group interview analysis
A total of three Colchester cancer support groups took part in focus group (FG) interviews during April 2014: a lymphoma group, a gastrointestinal (GI) group and a urology group. Groups were composed of patients and their carers/partners. These were well attended and 26 patients and carers were interviewed in total, including 17 patients and nine carers. Interviews were transcribed verbatim and common themes were identified.
4.2.1 The value of cancer support groups
There were considered to be numerous benefits in attending a support group. Participants discussed how the support received from the group was of a different nature to the support and information received more directly from the hospital, and how it was good to meet with others face-to-face to share experiences and information:
All the leaflets you can read, you can read forever, on the internet, anywhere, but it’s not the same as seeing somebody sitting there. (Patient, Lymphoma FG)
Two key elements of support were described by participants as being available at cancer support groups: peer support, provided by fellow group members; and support from visiting clinical staff who were considered particularly helpful in terms of the extra information provided to members. The groups appeared to provide an environment where members felt comfortable to speak freely about their experiences, and to receive and give advice, encouragement and hope to other members. A very strong sense of camaraderie was evident in the groups: A: Of course, you can talk freely amongst people who have the same symptoms that you couldn’t maybe do down the pub… B: That’s right, because what we suffer from [and] some of the symptoms we’ve got are a bit embarrassing... C: Like David there has got a bag and I’ve got to do my bag... It’s things like that. It’s nice to be in a peer group where you’ve got something in common. (Patients, Urology FG)
It gives you hope when you see other people who have been through it and you’re going through it. (Patient, Lymphoma FG)
Page 76 of 230 32 In addition to peer support, participants also reported how they benefited from being better informed and having access to clinical information and resources. For example, presentations and talks from clinical staff and outside experts were given to the group to keep them up to date with the latest research and to provide them with the opportunity to ask questions and discuss matters in a more relaxed, less time pressured environment than in clinical settings: Because we belong to the support group, the cancer nurse specialists come to us, [and] it’s quite easy to get information. I think everybody here would agree, if we want to ask anything, we can. (Patient, GI FG)
Alongside the discussions about the benefits that the support groups provided to members, there was an awareness that, for some cancer patients, attending a support group did not appeal. It was felt that some people wanted to ‘just get through’ their treatment and not to discuss it or seek to find out more than the essential information.
I think there are a lot of people that deal with it on their own, find that they don’t like what we’re doing now, talking openly about things. A lot of people don’t like doing that. (Patient, Urology FG)
4.2.2 Communication
4.2.2.1 Breaking bad news
Participants discussed how crucial it was that they received their diagnosis in a sensitive and clear manner which allowed enough time and space to absorb the news and ask questions. Patients stated that it was important that they were told in an honest and clear way that made them feel reassured that they could trust the cancer care staff to look after them through their cancer journey. Being given a cancer diagnosis was experienced by participants as emotionally challenging, and various patients talked about feeling ‘shocked’, ‘shaken’ and ‘traumatised’:
… suddenly I was a cancer patient and, although I’ve been a patient for other reasons, it still hits you by surprise, and whatever you know intellectually about what you ought to be doing, emotionally you’re on a completely different planet. (Patient, GI FG)
It’s a huge issue because it colours how you go forward from there, it makes an enormous difference, that trauma does affect people. (Patient, GI FG)
In discussions about how diagnosis and unpleasant news about the patient’s progress were delivered, some mentioned that there were consultants who were not very skilled in delivering bad news in a sensitive manner. There was a perception that, whilst such consultants were technically highly skilled, their interpersonal skills were not as sophisticated:
Page 77 of 230 33 These people are really clever at what they do, they’re intelligent people, they may not have people skills, it happens in teaching, and I think that’s quite important because if you start a journey off badly, it stays with you. (Patient, GI FG)
4.2.2.2 Treatment plan communication
Following initial diagnosis, and when embarking on treatment, it was considered important to patients and their carers that they did not feel rushed and were given plenty of time to process information. A further issue raised was that patients needed to be given a sufficient quantity of information, tailored according to their needs, at different points in their cancer journey. In particular, participants stressed that information needed to be provided in clear simple language rather than in excessively technical language. This was also found in the survey, in which participants reported that the assistance and support provided by the cancer nurse specialist, in answering questions and providing explanations tailored to the individual’s specific needs, was invaluable:
… when you first hear that you’ve got cancer, there’s nobody actually there that you could turn to, to say “what does this mean?” But now they’ve got a Macmillan nurse there all the time so you can go to her, [and] get a slightly more agricultural explanation of what it means and what you’re going through. The doctors tend to have quite a clinical approach and you’re just sat there. (Patient, Lymphoma FG)
When we had your appointment to say that you needed your bladder removed, they actually put us in a room… with the cancer nurse specialist, on our own, so that we could digest it [and] get used to it. She left us… to think about things, and then came back to see how we were and what we’d decided. (Carer, Urology FG)
The cancer nurse specialist was seen as complementary to the doctor’s more clinical approach:
I suppose the problem is there’s no easy way to tell someone they’ve got cancer. They come across it every day so they come out with the clinical facts of it, what you then need is time to gather your wits and have somebody to talk to when you can ask the stupid questions without feeling as though you’re an idiot. (Patient, Lymphoma FG)
Overall, patients tended to be complimentary about the quality of communication when their condition, treatment and possible outcomes were explained to them thoroughly.
During all the focus group interviews, discussion took place about whether the ongoing communication throughout patients’ treatment was as comprehensive as it could be, particularly in relation to timescales and when patients should expect different phases of their treatment to take place. For example, some participants described how they were left feeling unsure about when treatment would begin and how this uncertainty could leave them feeling anxious that the cancer would be spreading:
Page 78 of 230 34 M: She had a major operation and they removed the lymphoma off her back, and the doctor then said, “right, you’ll need chemo right away” but we had to wait … it was quite a while and nothing was said in between, but they didn’t tell us… F: Yes, I was worried because I was anxious to get the chemo started because I thought, what’s happening, because they’ve done the operation but it mentioned chemo and they weren’t starting…. I didn’t know whether they were waiting for me to get over the operation. M: But they didn’t tell you that did they? F: No, they didn’t. (Male Carer, Female Patient, Lymphoma FG)
As well as having a clear sense of when treatment would occur, participants also discussed their desire to be kept well informed about how their treatment was progressing, and, if this was not possible, to at least be told when they could expect updates.
At no time through that radiotherapy was I told how it was going, ‘your tumour is shrinking’ or ‘I’m afraid we’re not doing very good, it’s getting bigger’, but there was no information coming back. (Patient, Urology FG)
Whilst there was acknowledgement that it was not always possible or appropriate for clinical staff to report on how treatment was progressing, it was felt that this needed to be clearly explained to reassure patients that they were being kept as informed as possible about their treatment at all points.
4.2.2.3 Feedback
There was a perception that the hospital provided a variety of forums for patients to give feedback, such as participatory events, paper questionnaires and online methods:
By and large, yes, you are invited to feedback. It’s there online. Dan Snow, who’s the Communications Manager, is on Facebook, he invites people to feedback, there’s part of the website where they invite comments. If people don’t [feedback], there’s not much you can do about that, but the opportunity is there. (Patient, GI FG)
Whilst participants felt positively about the variety of mediums available to feedback, there was some discussion about them not then knowing what happened to the feedback once they had provided it: I can’t honestly say I ever got to find out where my comments went because, on discharge, they gave you a simple yes/no [option], “did we treat you well?”, “what did you think of this, that and the other?”, and I gave it back to the nurse and then left and went home. I don’t know where that went, who read it or whatever. (Patient, GI FG)
Page 79 of 230 35 4.2.2.4 Being listened to
Participants described how they felt that it was absolutely essential that the clinical staff should genuinely care for each and every patient, listen to their questions and concerns, and treat them as individuals:
You feel that you’re not a number, you’re a person, and this person [a member of the clinical staff] is discussing your case, not two, three, four, five cases, it’s your case. (Patient, Urology FG)
They do take their time with you. It might be a silly thing to say but…. they were obviously [a] doctor and nurse first, but I felt like they were a friend. (Patient, Urology FG)
4.2.3 Experiences of care
Participants described their experiences of care with reference to the timeframes in which their care took place and within the context of there being perceived understaffing in the cancer care services at the hospital.
4.2.3.1 Timeframes
Patient perception of the timeframe in which they received treatment was discussed, as it was thought to have a critical potential impact on outcomes:
The treatment has been absolutely brilliant. If they hadn’t been so quick I don’t think I’d be here now. It would have really got hold of me. So the treatment I had was first to none, really. (Patient, Urology FG)
Because of it being picked up early through the perceptiveness of my GP, early diagnosis, prompt treatment, so I’ve had the surgery and I’ve had the follow-up stuff… my experience on the whole has been very favourable indeed. (Patient, GI FG)
There was discussion on how understaffing impacted on the standard of treatment that patients received, and, in particular, on how able or not the hospital was to maintain high standards of service in situations of staff absence:
I think the biggest problem that people have been complaining about treatment at the hospital is it’s lack of staff. When people get their appointments moved, people don’t seem to think that these doctors and nurses go on holiday or are sick… We’ve got three cancer nurses [who] are brilliant. They could do with another one, really. It’s like consultants, they are really overworked. (Patient, Urology FG)
A further area highlighted, relating to the issue of understaffing, was that patients have relatively short appointment slots, only around ten minutes. This often meant that appointments would overrun, as patients inevitably ended up going beyond their allotted
Page 80 of 230 36 time, resulting in appointments later in the day often running a couple of hours behind schedule.
4.2.3.2 Cancer nurse specialists
Participants were extremely complimentary about the quality of care provided by cancer nurse specialists, and this was discussed in terms of the reassurance they offered and how they could be relied upon to respond to enquiries in a timely fashion and certainly within 48 hours. The speed of return calls was crucial to ensuring that patient worries were addressed:
I think you can feel abandoned… and everybody needs reassurance, both the patient and their partners or the family. Susan, we could phone her up at any time. (Patient, Lymphoma FG) … instead of worrying about it, you can ring and find out. That’s the thing; there is always someone at the end of the phone. (Patient, Urology FG)
There was a consensus across the groups that the care provided by the cancer nurse specialist was invaluable and that they regularly went out of their way to do all they could to listen and support those in their care:
Monica had gone that extra mile. When I sent the email, it could have sat in her inbox, I didn’t know how busy she was, but she looked, she knew this patient was anxious. She also knew the results, she knew they were good and contacted the patient on the phone to make sure she knew they were good as well. That is brilliant service. It’s not necessary but, my word, it makes a difference. (Patient, GI FG)
4.2.3.3 Consultants and other hospital doctors
Participants from all three focus groups had a range of experiences with consultants and other hospital doctors providing patient care. Patients reported feeling that hospital staff had gone out of their way to provide personalised care that had, at its core, a concern with ensuring that patients, and their families/carers, were informed and felt involved in their treatment. In one case, a patient reported a consultant making a special visit to the hospital from home, at a weekend, to see a patient who had concerns and questions post-surgery that had not been addressed at the time of the surgery. In other cases, participants reported doctors ensuring that both patients and their families felt reassured and able to make contact with them:
My lady surgeon was wonderful, kept me well informed, she kept my family informed, she told my daughters who were a little bit of a pain in the neck, bless them. She gave them all her mobile phone number, her email address, and she said “if you’ve got any problems about your Dad, here’s my number” and she meant it. (Patient, GI FG)
Page 81 of 230 37 4.2.3.4 Partnership working between patients and staff
In situations where participants were less positive about the care they received, this tended to be when they felt that they had not been empowered to make informed decisions about their care in partnership with cancer specialists:
I just felt that, really, I didn’t have a choice. Maybe if he’d said something like “the choice is, you take the chance it will come back quickly and you won’t live very long”, but as an intelligent person, I knew that… (Patient GI FG)
4.2.4 Administration
Some participants reported communication problems between the hospital and other care providers. These problems tended to focus on the speed at which communication took place and a feeling that administrative systems were not as technologically advanced as they could be. Participants expressed their frustration about delays and the length of time it took for communications, such as important test results, to be passed from the hospital to their GP, and how this left them feeling that the system was not sufficiently ‘joined up’:
A: My GP isn’t getting stuff until about a fortnight after I’ve been there. I said “do you want to know the latest?” I’ve had to tell her. B: Can’t they scan things in? It infuriates me that Tesco’s know what I bought yesterday and yet your GP doesn’t know what’s been done to you. (Patient discussion, GI FG)
A few participants found that communication between Colchester Hospital and other hospitals was not very good:
F: Tom had his stem cell at a different hospital, and they were often waiting for PET scans and CT scans to come, and this was both ways … and you think you’ve got all this technology, why is this delayed? So we would go up to the hospital for the day for check-ups, get there, and they hadn’t got the information from Colchester [Hospital]. M: They’d got the information, the information was on the system, what they hadn’t got was the flag to be able to find it, that was the problem. F: And same thing from the other hospital when we came back here; again the information would be sent through electronically but, because it sort of, [got lost] in the system... (Female Carer, Male Patient, Lymphoma FG)
4.2.5 Clinical errors
Over the course of the three focus groups, one clinical error was mentioned. This case involved a patient being given a drug that he had informed staff would cause him problems. Despite the patient informing staff of this, the drug was still given to him and he ended up
Page 82 of 230 38 being in hospital for a longer time period whilst recovering from the effects of the unsuitable drug. This case illustrates how important it is that patients are listened to and that accurate, up-to-date records are maintained and used to prevent the occurrence of avoidable errors. 4.2.6 Responses to complaints
On the whole, our focus group participants reported that they had little cause to complain. There was one example given where a patient did complain and it was acted upon. A lymphoma patient was not happy with the quality of care being provided by a particular doctor and, after a couple of sessions with this particular doctor, raised the issue with the cancer nurse specialist and requested to see a different doctor. In subsequent sessions, the patient saw a different, more senior, doctor.
4.2.7 The role and importance of carers in supporting patients
As outlined above, the focus groups were composed of both patients and their carers/partners, and the discussions included the latter’s role in supporting patients. Although not all patients who attended were with carers/partners, two main facets of the carer role were identified: emotional support and practical support. In terms of emotional support, participants described the value of having a loved one physically by their side through their cancer journey and how this was particularly important at the point of diagnosis and when given other critical news, such as post-surgery or when receiving test results. For those who did not have a carer/partner present at such critical moments, they felt very alone and vulnerable:
I was on my own, after my operation, I was on my own at half past eight in the morning, and the doctor come to see me and he just told me it was cancer, and I’d got no-one else there… (Patient, Lymphoma FG)
The other main aspect of the carer role was very practical support, described particularly in terms of the carer taking responsibility for listening and recording information given to patients during meetings with consultants. It was felt that the patient was not always able to take in and fully comprehend the information, and having a carer or companion present not only provided much needed emotional support but was a way to ensure that information was better understood by the patient:
I’ve always gone in with Simon each time because you need to listen as well. When it’s the person that’s affected they don’t take everything in, necessarily. I don’t say anything but I’m another pair of ears. (Carer, Urology FG)
A: As a patient, you cannot take that all in at once. That’s why I say I couldn’t have managed without my wife because you go home and you say, “what about that?”, he did tell us but you obviously weren’t taking it in. Page 83 of 230 39 B: You’re too busy thinking about the next question or, if you are listening to what they’re saying, you suddenly get scared that you’re going to forget what you wanted to say, and you get in a total muddle. (Patients, GI FG)
Overall, we found that members of cancer support groups reported more positive experiences. Each of the groups praised CHUFT and many members said how sorry they felt about the bad media publicity the CQC enquiry had caused. However, we have revealed this does not mean that they always experienced high quality care and treatment, but overall there was a sense of solidarity expressed by participants, particularly about the positive aspects of belonging to a patient group. Previous research carried out in Australia revealed that cancer support groups provided members with ‘a unique sense of community, unconditional acceptance, and information about cancer and its treatment, in contrast to the isolation, rejection, and lack of knowledge about cancer frequently experienced outside the group’. (Ussher et al 2005)
Page 84 of 230 41 4.3 Interview analysis
A total of 16 participants took part in one-to-one in-depth interviews. Of the 16 interviewees in the sample, eight were patients (and in three of these interviews, other family members/carers were present and contributed), and eight were carers. Of the carers, one was a son, one a daughter, one a set of parents, and five were spouses of cancer patients. All names used here are pseudonyms. Our sample was chosen primarily on the basis of respondents’ satisfaction levels with cancer treatment, care and support received at Colchester General Hospital, as indicated by their survey responses to those specific questions. Of the 16 interviewees, four were very/extremely satisfied, nine were dissatisfied/not very satisfied, and the remaining three were satisfied and/or had given mixed responses in the survey, e.g. ‘satisfied’ with treatment but ‘not very satisfied’ with the care and support provided. Apart from one telephone interview of a carer who lived some distance away, interviews were carried out in interviewees’ own homes and lasted for a duration of between one and two hours. The interviews took the form of naturalistic ‘guided conversations’ (Lofland and Lofland 1984) and although a topic guide was used to check that topics were covered and to guide conversations toward these topics if they did not spontaneously emerge during the interview, for the most part there was little steering by the interviewer, and, rather, narrative accounts of participants’ experiences emerged naturally.
4.3.1 Care
The quality of care received was central to interviewees’ overall satisfaction with their cancer experience at CHUFT. The cancer journey was felt by most interviewees to be an extraordinary, often shocking, life-changing event. How patients were treated, and how well cared for they felt, had the potential to make a huge difference to how they, and their carer, experienced cancer. A point to emphasise here is that, while four of our interviewees reported high satisfaction levels with their care and treatment in the corresponding survey questions, all those interviewed did narrate episodes where they experienced poor care.
4.3.1.1 Quality of care
There were very mixed reports about satisfaction with the care and support provided at CHUFT. Six of our interviewees had reported in the survey that they were satisfied with the care and support provided, (selecting either ‘satisfied’, ‘very satisfied’ or ‘extremely satisfied’), and ten had reported that they were not satisfied (selecting either ‘dissatisfied’ or ‘not very satisfied’). Therefore, in the interviews, we found that people’s assessments of the quality of care they, or their loved ones, received showed a great deal of variability. One prominent feature to emerge from the interviews, however, was the quality of care provided at the Mary Barron Chemotherapy Suite at Essex County Hospital. This was described as outstanding by all who encountered it. Page 85 of 230 40 Unfortunately, at the other end of the spectrum, many of our interviewees narrated accounts of poor quality care at Colchester General Hospital. Participants’ descriptions of, and responses to, the care they or their loved ones received included, in the worst cases, patients feeling frightened during their stay in the hospital and being eager to ‘escape’. In other accounts, interviewees described their dissatisfaction at basic care tasks not being carried out, such as not being washed/or assisted to wash, and, in some cases, not receiving the food needed to restore them to health and having to wait for water and other drinks for sometimes hours after requests were made.
Eileen’s care
Eileen was in hospital, on oxygen, unable to eat and drink and not very mobile but had been judged to be able to manage her own self-care. She was brought regular drinks but these would be left out of her reach. In general, she would be taken to the toilet, without the oxygen, and then brought back and the oxygen put back on. There were occasions when she was taken to the toilet and left without the oxygen, and Eileen would then be ringing for someone to come and get her. Her daughter Barbara told us: There were occasions when she thought she was going to die on the toilet because she was that poorly. They still insisted that she was doing her own care but she wasn’t, she couldn’t, she was unable to.
On other occasions, too, Barbara felt that her mother had not been listened to and that the staff had shown no compassion in their care, just conducting the minimum standard checks on Eileen in a ‘standoffish’ manner.
In contrast, Barbara described the care that Eileen received at the Mary Barron suite as excellent:
They were good with the patients, they would come over, even if they were with a patient next to Mum, they would be talking to Mum as well and they would involve her. It was just good nursing care, just treating her like a human and if she’d got a question … like with the nausea, they listened and they adjusted the medication, no problems. (Barbara, daughter of Eileen, breast cancer patient)
4.3.1.2 A caring place
As we have already reported, the Mary Barron suite received praise from both our survey and focus group participants. Likewise, all interviewees who had received chemotherapy treatment in the Mary Barron suite were highly complimentary about the nursing care they received. The nurses were described as being sensitive to everyone’s needs and caring, putting their patients at ease. Nothing seemed to be too much trouble for them. This seemed really important to those undergoing the experience of receiving chemotherapy in a Page 86 of 230 42 room with others, and transformed what otherwise might have been a ‘depressing’ and ‘horrible’ experience:
The one thing that did really shock me was chemotherapy, I expected to go into this room and for it to be depressing, loads of sick people, and it wasn’t like that at all. The nurses were amazing… all of the girls in that suite were amazing, to be able to keep so upbeat when you must see people that are really ill, was fantastic…I think it’s nice to have had such a good experience from something so horrible, because it’s the worst thing in your life. (Hannah, gynaecological cancer patient)
In general, the high quality of care provided at the Essex County Hospital was perceived to be linked to the size of the site: given that it was a much smaller hospital than the General Hospital. Patients and their carers felt that they were receiving care in an intimate, personalised way, and they built up relationships with the staff. The fact that the site specialised in cancer treatment was also seen in positive terms as providing an environment where patients were with others ‘in the same boat’, and this provided a sense of camaraderie. In contrast, participants reported that they did not experience the same degree of trust in the larger hospital environment where, because of its size, those same relationships with professionals were difficult to establish. For example, a common complaint was that patients could end up seeing too many medical personnel who did not know their medical history, and this could lead to inconsistencies in medical opinion and ambiguous treatment plans.
Overall, the care at Essex County Hospital was perceived to be less time-pressurized, with staff delivering care in a patient-centred manner. In particular, interviewees stressed that the quality of the emotional support provided by nurses at this site was of a very high standard. Interviewees discussed how nurses made the effort to talk with them and get to know them and their families:
They were all very nice and friendly whenever you went there, they always seem as though, little tiny things like… when you’ve mentioned anything, they touch you as if to say ‘we know how you feel’. (Katherine, gynaecological cancer patient)
4.3.1.3 Personalised care and patient choice
The degree to which care and treatment were tailored to individual patient needs and circumstances was considered to be a very important aspect of high quality care. It was considered critical to patients that they, and those supporting them, felt that they were receiving care that was personalised to them and that they were not treated as ‘just another’ cancer patient:
I don’t think William got the treatment he should have got as an individual. I think he’s probably grouped with a load of people with bowel cancer, I don’t think he was treated as an individual who’s important to anybody. (Claire, wife of William, lower GI cancer patient)
Page 87 of 230 43 When care was perceived to be tailored to the individual’s needs and circumstances, such care was highly praised.
Hannah’s care: patient choice
Hannah was given choices throughout her treatment, such as the choice of whether to receive her treatment at a different hospital or at CHUFT. She opted to receive her care at CHUFT, as she would not have to be away from her young children. This meant that Hannah was able to make the best decision for her and her family. Overall, Hannah felt that her care had been exemplary in terms of being able to make choices and retain a sense of control:
They will always say to me “are you happy with this or do you want us to try something else? These are your options, what would you be happiest with?” and that’s what I need. I need to feel like I’ve got some sort of input or control into what is happening with the treatment, and they have always given me that, which is something that I’m grateful for, because it made me feel like I had a choice. (Hannah, gynaecological cancer patient)
4.3.1.4 Empathy, compassion & dignity
When describing what good care involved, participants frequently mentioned that staff had demonstrated empathy and treated them with compassion. In such cases particular members of staff stood out and became models of how all staff should be:
There was one nurse, an older woman, who was brilliant, she was my idea of what a nurse is, but the trouble is she can’t do every shift… It was her understanding, it was her empathy, and she was alive to the needs of the patient, and she helped the patient. (Michael, husband of Rachel, lung cancer patient)
In contrast, where there was felt to be a lack of compassion and empathy with patients, the quality of care was felt to be significantly lacking, and that patients were neglected:
The whole nursing care on the ward she was on, there was no care, there was no empathy, it was all very routine, and if you didn’t fit into the routine…just the care wasn’t there. There was no care or empathy for Mum at all. (Barbara, daughter of Eileen, breast cancer patient)
A further element of good quality care, identified as important to our interviewees, was when they were treated with dignity and respect. This could involve acts such as being sensitive to patients’ bodily privacy and ensuring that matters which had the potential to cause patients to feel embarrassed or ashamed were dealt with as compassionately as possible. People reported examples of both good and bad practice.
One example of good practice occurred in the early hours of the morning when Peter’s colostomy bag burst in the hospital ward toilet and the contents had gone all over him and
Page 88 of 230 44 the bathroom. Peter was very distressed and pulled the emergency cord. A nurse came in and immediately reassured him, telling him not to worry and that they would get him washed down and back to bed. A short while later one of the cleaners came up and said to Peter ‘don’t worry love, it’s happened hundreds of times before and it will happen hundreds of times in the future’.
In contrast, a poor example was reported by Harry and Gemma, carers of Pearl. Pearl was in hospital, about to have a meeting with her consultant, and wearing a hospital gown. She requested that she get her own dressing gown before having the meeting. Pearl was told that there was ‘no need’ for this.
4.3.1.5 Communication
Interviewees felt that good communication, in terms of how information was delivered, as well as the content of the information, were very important aspects of their satisfaction with care.
4.3.1.5.1 Breaking bad news
The way in which patients were informed of their initial diagnosis, and the breaking of bad news in general, were seen as particularly important, as patients were often in shock or were struggling with overwhelming emotions.
She was very brave, she was a bit sort of tearful, but nothing much, and we were very brave – because it hits you like a truck – you can’t really take it in. (Helen, mother of Emily, lower GI cancer patient)
Interviewees reported feeling ‘stunned’ and not able ‘to take it in’ when they received their cancer diagnosis, and wanted the communication of the news to be delivered compassionately and sensitively. One general complaint was that consultants could deliver diagnoses in an abrupt ‘mechanical’ way that lacked empathy:
He said “yeah, I’m afraid you’ve got it, and the good news is, if it’s contained within your bladder, we can remove your bladder and, hopefully, it will be gone”. But he said “if it’s come through the bladder, I can’t say” and with that, he went, didn’t he? He just went back through, he went out of the room and I sat there. I was gobsmacked… he left me [up] in the air. I thought he would have sat down and said “this is it, and we can do this, we can’t do that, I’m sorry to hear about it but…”, but he just went. (Peter, urological cancer patient)
He said “yes, you’ve got cancer, we need to go a bit further with it”, and he said “you’ve got various options you can think about” and, at that stage, he more or less handed me to his senior cancer nurse who took us to one side, in a nice compassionate way… I thought we could have had a bit more time with him, to explain a little bit more in-depth, but, instead, he sort of left it to the nurse to do. (David, urological cancer patient)
Page 89 of 230 45 In Peter’s and David’s cases they were both left with a nurse specialist after the consultant left. The nurse would then talk through the diagnosis and explain what it meant in terms of what the possible treatment options might be. Such conversations with specialist nurses often ‘rescued’ patients’ diagnosis experience by providing the reassurance and emotional support that they had expected to receive from the consultant breaking the news.
The view that consultants did not emotionally connect, and provide more person-centred care to patients, was commented on by David, Peter, and others in the sample, for example:
I didn’t feel he was that compassionate but, then again, he’s dealing with cancer all the time so…he deals with cancer every day, but the public don’t and they need their time to digest it and sort of sit down. He doesn’t even sit down, does he, he’s standing there. (David, urological cancer patient)
They suggested that consultants’ style of care and communication with patients resulted from cancer becoming normalised because of their day to day work with cancer, and heavy workloads. Because of the latter, it became impractical to become emotionally involved with individual patients, and delivering care in a mechanical manner meant that they were able to process a high volume of patients. The approach taken by consultants was compared to the technical manner in which a car mechanic might work: diagnosing a problem and finding a solution to fix the problem.
4.3.1.5.2 Consultants and hospital doctors, personalised care and bedside manner
As with other aspects of care, experiences ranged from those with high praise for consultants to those with negative assessments. Some thought that consultants were not very ‘patient friendly’, and practised in an arrogant way that treated patients as numbers. Interviewees reported feeling as if they (or their loved one) were on a conveyor belt of care that was being driven by NHS targets rather than patient needs. In addition, examples were given of consultants behaving in ways which did little to promote patient decision-making. In such cases, treatment plans were recommended with no explanation and no discussion about other potential treatment choices. When challenged by patients as to whether there might be alternative courses of action, patients and their carers often felt such questions were quashed:
What I’d like to see is the senior consultants in that hospital [having] a bit more respect for people’s feelings, [showing] a bit more of a duty of care… I honestly just think, for him, it was no real patient care and it was “in and out the door as quick as you can, next patient”, so he can tick off his box. (David, urology patient)
Unfortunately, other examples were given of doctors lacking sensitivity and missing critical information in patient notes:
She [Mum] had been sitting with a doctor at Colchester Hospital and he’d gone through all the “this is what we’re going to do and this is how we’re going to treat it” and tried to make a joke about “don’t worry, we’ll save the other one”, referring to Page 90 of 230 46 her other breast, when it’s very clear that he hadn’t read any of the notes and realised that she had had the other breast removed. That’s a bit laughable really. It left her feeling particularly vulnerable, I suppose, and she couldn’t believe that he hadn’t read the notes. (Jacob, carer of Beatrice, lung cancer patient)
In contrast to these negative experiences, the interview sample also included participants with more positive experiences. In such cases, interviewees spoke of the pleasant patient- centred manner of consultants, and/or the reassurance they offered, and the trust they had in their judgement and care:
We spoke to the consultant there, who was a very, very nice man, very sympathetic, very empathic, and I remember he boosted her confidence because he took her hand and he said ‘we’re going to make you better’. (Michael, husband of Rachel, lung cancer)
He’d come and sit on the bed, and perhaps squeeze my hand, and say, “you’re doing really well, keep fighting”, just words like that. I can’t explain the difference that made; it made you feel like you were a person rather than just someone in a bed. It made a world of difference; he would come and see me occasionally as well, and basically reassure me to keep fighting… it was just a caring attitude. (Gary, lower GI cancer patient)
The consultant, without him, I would have given up completely, he’s the only person that can make me feel like I will be all right… they’re trained to know when you need a little bit of a boost, and there was a couple of times where I did need [a boost], especially when you’re having chemotherapy, I wasn’t prepared for how horrible it would be. (Hannah, gynaecological cancer patient) 4.3.1.6 Cancer nurse specialists
The majority of discussion around the care provided by the cancer nurse specialist was extremely complimentary, particularly in terms of enhancing patient wellbeing through the personalised, emotional support they provided. Patients described the cancer specialist nurse as going well beyond perfunctory nursing and as making a real difference to their sense of wellbeing during their cancer treatment. For example, Hannah described how her ‘amazing’ cancer nurse specialist would ensure that she always got her test results through immediately they were available and, more generally, had such knowledge about her, as a person, that her support needs were often anticipated:
She knows me well enough to know that when I’m having a panic, which a lot of people in my situation go through, she knows it’s important for me to have it nipped in the bud quite quickly, because if not, it can escalate… she knows with me that, if I need to talk, a lot of times I won’t be very forthcoming, I won’t say straightaway “I need some support”, but she just knows…I think that she definitely goes above and beyond what she needs to do with me, and that’s made a hell of a lot of difference to me. (Hannah, gynaecological cancer patient)
Page 91 of 230 47 My colorectal nurses were actually superb. Exactly what you expect a nurse to be. I know it sounds silly, but they used to come, they were both very good, one particularly used to come into the ward when there was no particular need for her, but [she] used to come and sit on the bed and just hold my hand when I was really low, and just talk to me. It made a world of difference because, although my family were doing that, for someone from the hospital to do that meant so much more. (Gary, lower GI cancer patient)
However, within our sample there were a small minority of interviewees who were dissatisfied with the care they received from their cancer nurse specialist. In such cases they felt that they had not built a relationship with them, and/or their cancer nurse specialist had not been easily available to provide support. Patients felt let down:
I don’t see why I’ve got [a] key worker who is a breast care nurse at the [Essex] County [Hospital] when she doesn’t ever really ring me; she’s there if I need to ring her, but it’s an answer machine and, potentially, if she’s not around, one of her colleagues rings back, and they don’t always have your notes to hand… if she’s like my key person, she should have a little bit more of a relationship [with me]. (Lydia, breast cancer patient)
4.3.1.7 Systemic Issues
There was widespread discussion of how systemic ‘macro’ issues created problems on the ground for patients and their carers. These systemic issues were perceived to originate from the challenging financial and political climate affecting the NHS. Staff were perceived to be struggling to provide good quality care in the current climate, and to be working under such challenging conditions that they are just trying to survive and get through the basics of doing their job; they do not have enough time to care. At worst, in this siege-like mentality, patients could come to be seen as a burden, rather than of central concern. As Michael told us, from what he observed:
The staff, they had an “under siege” mentality, that’s how it appeared, and, I think I touched on this earlier, the system was in place and the unfortunate part of the system, the spanner in the works of the system, was the patients. If the patients weren’t there, the system would have worked beautifully. (Michael, husband of Rachel, lung cancer patient)
Another patient spoke of her disappointment with the system.
…disappointed, I think, in the system, is all I can say, because I know how it should be done… it’s the system, it’s the whole… now you don’t see qualified staff, and they do come into the ward with their eyes fixed on where they’re going. They don’t make eye contact in case you ask for something. It’s very blatant… there is no caring. (June, breast cancer patient)
Page 92 of 230 48 The systemic issues participants discussed were: understaffing, a lack of available beds, and differences between the quality of care provided depending on time of day and during holiday times.
4.3.1.7.1 Understaffing
Interviewees discussed the impact that they felt understaffing had on the quality of care that staff, especially nurses, were able to deliver. The insufficient numbers of both cancer nurse specialists and nurses on general and acute wards was thought to have a detrimental impact on both the quantity and quality of care that patients could expect to receive:
There was one nurse who was quite good, but she was… having to go round and do the entire ward. You think ‘crumbs, if they had another two people on here…, it would all [have] calmed down a bit and you wouldn’t get the drunk up the end shouting his head off’… they’re very over-stretched. It’s not the nurses’ fault, it’s the system. (Jacob, describing his mother Beatrice’s care in A&E)
In particular, poor response times to buzzers and basic needs being met, such as receiving water to drink and being assisted with going to the toilet, were given as examples of the impact of inadequate nursing numbers:
They were telling you “you’ve got to drink plenty of water” but were never filling your water jug up, even though you asked. I asked at six o’clock in the morning. She said ‘If you want to go home today you need to get your blood pressure sorted and we need to get your oxygen levels up, drink, drink, drink.’ I said ‘can I have some water, please?’ They came at nine. (Lydia, breast cancer patient)
In some cases it was felt that inadequate nursing numbers resulted in only very perfunctory mechanical care being delivered. This might mean that hospital protocols were being met but not that good quality care was being provided:
People don’t just have needs every two hours. I can see a theory why that would be a good idea because patients aren’t being neglected because ‘we see them every two hours, we’ve ticked the box’. It was a box ticking exercise, ‘done that, done that, onto the next patient, done that’… It wasn’t patient-centred, it was very much nurse led. (Barbara, carer of Eileen, breast cancer patient)
4.3.1.7.2 Bed shortages
The problem of a lack of beds for patients seemed to be a particular problem when patients were admitted to hospital in emergency situations, and therefore entered the hospital via A&E. For example, in Jacob’s mother Beatrice’s case, she had spent 48 hours on an acute ward while waiting for a bed. Unfortunately, a space could not be found and she was admitted to an old people’s home which was not set up to deal with cancer patients:
Page 93 of 230 49 We were desperate to just get her settled somewhere, and they were all saying there were no beds, for one reason or another, people weren’t admitting, it was very hard, frustrating really. (Jacob discussing Beatrice’s care)
4.3.1.7.3 Care at night/holiday periods
There was some mention that the quality of staff varied according to time of day, with the perception being that more agency staff tended to work at night-time with permanent staff working in the day-time. The perception was that the care offered by the agency staff at night was not as good as that offered by the day staff:
Some of the night nurses … I think a lot of them were agency nurses, they were all right but you could tell that they weren’t, not quite the same level. (Peter, Urological cancer patient)
4.3.1.7.4 Inexperienced staff
There was some concern that junior doctors were not experienced enough for the care they had responsibility for delivering. Some interviewees described how they had felt that junior doctors had been ‘clutching at straws’ with patient care, which tended to lead to patients and carers lacking confidence in the care provided:
She wasn’t listened to by the junior doctor, the junior doctor was doing an experienced doctors job, he wasn’t up to the standard required during that period. (Robert, husband of Dorothy, gynaecological cancer patient) 4.3.1.8 Discharge and after care
It was very important to patients and their carers that before they were discharged from hospital they felt confident that they were well enough to go home, and that appropriate after-care plans were in place for their ongoing care in the community and/or for follow-up checks. In situations where people felt they had been discharged prematurely, they tended to feel dissatisfied with their care:
What annoyed me, sending somebody home when you knew damned well that – or you should know if you were a doctor – if I’d worked it out that there was going to be problems, Dorothy worked it out, if she came home, she wasn’t right, you’re getting a paid doctor on at least hundred grand a year, well you’d think he’d know! (Robert, husband of Dorothy, gynaecological cancer patient)
In particular, patients and carers described feeling that both practical and emotional support could be lacking and, in such cases, that they were ‘abandoned’ to just ‘get on with it’ and recover without support and aftercare:
I felt that, once you came out hospital, you were left on your own, to be honest; I didn’t see anybody after I came out of hospital… I didn’t see anybody really from the
Page 94 of 230 51 time I came out of hospital to the time I went back. (Katherine, gynaecological cancer patient)
There was no after-care… not once did we get a visit from anybody… I think they should have looked after him. What if I wasn’t here? What if he couldn’t do it on his own? I get really passionate about it because I know I can do it but it’s not my job to do it for him. They should have been looking after him from start to finish and they haven’t. They’ve let us down really. (Claire, wife of William, lower GI cancer patient)
After that [mastectomy] nothing, absolutely nothing…nobody phoning up to say how are you doing, absolutely nothing. I felt, like I say, abandoned… I thought I should be seeing somebody, surely. (June, breast cancer patient)
In contrast, patients who felt well supported after leaving hospital described feeling that their care team was there for them, should they be needed, and they were confident that they could get back in touch with their care team and be responded to appropriately:
You know that, any problems, you’ve just got to phone her up and she’ll put you right about anything… it’s nice to know that you’ve got a backup group behind you, sort of thing. They’re always there. If something went wrong, I know I’ve just got to phone them up and I can guarantee they’d say, ‘right, get him here’. (Alice, wife of Peter, urological cancer patient)
4.3.1.9 District nurses
In cases where patients had received after care in the community from district nurses, generally the nurses tended to be given high praise. This was especially so when the visits from the nurses had been authorised for an adequate length of time that matched the clinical care need. However, in cases where the aftercare was only for a limited period, patients’ carers in particular felt that they had been expected to just get on with providing their loved ones’ care, and for some, this responsibility proved a stressful experience:
I struggled a bit because you had the nurse come in, and [the wound] was weeping, and I was having to dress it when she couldn’t get out to see her… we didn’t get a lot of joy with the district nurse, who said “once the stitches are out you have to more or less get on with it, we can’t come back”. (Robert, husband of Dorothy, gynaecological cancer patient)
4.3.1.10 Outpatient appointments
Patients wanted to receive good care, and receive reassurance, all the way through their cancer journey, and this included the care they received post-surgery/treatment as an outpatient. In some cases, check-ups were not reassuring for patients and they queried the quality of their aftercare:
…the surgeon is in and out, you’re ready, stripped up, jumper down and bang, bang, bang, “no that’s all fine, off we go, see you in… ” it’s not long enough because you’re Page 95 of 230 50 left feeling dissatisfied. You’re rushed. It’s all rushed and you just don’t feel that the job has been done properly. Even though it may well have been done properly because he knows, presumably, what he’s looking for. So from his point of view it probably is okay but, because it’s quick, [a] quick feel and then he’s backing off and he’s at the door saying, “I’ll see you in six months”, and you think, oh right, is that it? It’s not reassuring. (June, breast cancer patient)
In cases such as June’s, where patients perceived their after-care check-ups to have been rushed, they were left with concerns about whether they had been checked ‘properly’ and with worries that something could have been missed.
4.3.1.11 Carer’s role
Carers’ and patients’ wider support networks were deemed to be critical in supporting patients in both practical and emotional ways. In terms of the former, they provided invaluable support, in particular by ensuring that practical logistical matters were taken care of, such as taking time off work to care for a loved one, organising childcare, and, in some cases, providing significant financial support. Accompanying patients on clinical appointments was seen to be extremely important, as carers could shoulder much of the responsibility of listening to and retaining information about treatment and the stage of the condition. Some patients and carers described how this responsibility to take in the information given during appointments fell entirely to the carer, for example in the case of Hannah who gave over responsibility to her family members:
They [consultant and nurse] know me well enough to know don’t overload me with the information because I won’t take it in. They’ll speak to my Mum or my husband, they’ll ask me what I think and things like that, but normally they know my Mum’s there so when I come out and say “what did that mean?” she’ll say “he meant this, he did explain that”. (Hannah, gynaecological cancer patient)
In terms of emotional support, both carers and patients recognised how invaluable it was for the carer to be there, so that the patient was not alone in their cancer journey and to ensure that the patient stayed psychologically strong and able to cope with treatment.
4.3.1.11.1 The carer as patient advocate
Both carers and patients stressed how a key part of the carer role was acting as an advocate. In particular, those interviewees whose experience of receiving cancer treatment at CHUFT had been negative stressed that carers needed to advocate and even ‘fight’ for their loved one, to try to ensure that they received the best care possible:
How anybody gets on who hasn’t got people to fight for them, I just don’t know… if I was to give somebody a bit of advice who had been diagnosed with cancer, it wouldn’t be to take care, it would be “be prepared to fight, take an advocate with you, and a scribe, to every meeting and do not take their word, do not trust them”. (Gemma, daughter of Pearl, deceased pancreatic cancer patient) Page 96 of 230 52 Acting as an advocate was perceived to require specialist skills and it was felt that carers would vary in the ease with which they occupied the role and the skill they deployed when advocating. Those with previous experience in negotiating, and who were confident when working with highly educated people, perceived themselves to be more effective in the role.
I don’t know how some people could deal with this, because everyone had said how wonderful I was, how marvellous, I’m going “yeah but I employed what I can do, a lot of people don’t have that”, I can vocalise as well, as you’ve seen, and I can deal with people in authority, I’m not worried about that. I can deal with educated people and I think that’s something that they have to understand as well, not everybody can do that. (Linda, wife of John, deceased upper GI cancer patient)
Carers described how they often had to strive to ensure that their loved one’s needs and wishes were heard, especially in situations where the patient felt they had not been listened to. This meant that carers often needed to behave in an assertive way with medical staff in order to get patients’ views heard and to obtain the medical attention and care they needed. Gary reported how following his surgery he was feeling unwell. Upon informing the ward nurses, he was told it was ‘normal’ to feel unwell and this was probably just due to the drug effects wearing off. During the following days Gary continued to feel progressively unwell and continued to let the nurses know. When his daughter came to visit, she was so concerned that she insisted a doctor see him. When the doctor attended, serious complications were diagnosed. In this specific situation, Gary felt his concerns about how he was feeling were dismissed. Luckily, with Gary’s daughter’s intervention, the severity of the situation was discovered.
There were a number of other examples of carers stepping in to express their concern about their loved one’s health, resulting in the patient being attended to. In Linda’s case, when her husband’s health deteriorated seriously (just before he was due to return to work, post- treatment) and action from their GP had not helped, she telephoned the consultant and, much to her relief, the consultant asked her to bring John in for an examination. Robert also intervened on his wife’s behalf:
I went through and got hold of the staff nurse and said “I tell you what, she’s not going nowhere as far as I’m concerned, she isn’t right, she’s staying here”. (Robert, husband of Dorothy, gynaecological cancer patient)
4.3.1.11.2 The difference a carer can make
Interviewees considered that carers made a huge positive difference to the patient experience. This was felt to be not only in terms of patient wellbeing, but also in terms of the quality of care that patients received. For example, Gary (whose daughter had insisted that a doctor see him post-surgery when he was in pain – see case study 19) felt strongly that having regular visitors had a direct impact on the quality of care those patients received, and those without visitors were much more likely to receive less attention from hospital staff: Page 97 of 230 53 I felt particularly sorry for people that had no visitors and there were a number of those. I used to notice, I’m 99 percent sure, that the general care that the people got who had nobody was so much worse than the people who had people coming in. Particularly if you had a family who were a little bit vociferous, they tended to get treated a bit better. (Gary, lower GI cancer patient)
4.3.1.11.3 Who cares for the carer?
You’ve always got to remember the carer, they go through a lot, in fact sometimes they go through more than what the patient does. (Peter, urological cancer patient)
There was a consensus of opinion that the support that carers provided to cancer patients was invaluable. In light of this, there was also agreement that carers needed to have their support needs recognised and addressed, in order for them to perform the carer role. The responsibilities and expectations of the care the carers were willing and able to provide were, in some cases, felt to be excessive:
I just thought, try to understand that, a) I’m not a nurse, b) I’ve got my husband just diagnosed with cancer, and c) I’ve got to keep his spirits up. I’ve only got so much in the tank and, as I say, I’ve got children and a full time job. They expect too much of the carer… the carer needs a little bit of support. (Linda, wife of John, deceased upper GI cancer patient)
Another carer, Claire, also stressed how she would have appreciated support in her role caring for her husband William. She had been the sole carer for William following three separate operations he had undergone during the course of his treatment. He had not been issued with any community care following any of his operations meaning that full responsibility for William’s after-care fell to Claire, including wound dressing and monitoring for infections. She feels strongly that William should have received professional support following his operations:
I used to be frightened, what if he bleeds out, it gets infected? Because I’m not a nurse. Nobody came out to him. That shouldn’t happen, should it? There should be some support there to come out, and for dressings, or [to] clean his wound up… I felt I was his carer at the time, and I shouldn’t have had to be his carer, not really, I mean I would be but… it’s not the point. The point is there should be support after a major operation. (Claire, wife of William, bowel cancer patient)
In both Claire’s and Linda’s cases, while they were able and willing to care for their husbands, they both felt that the responsibility should have been overtly recognised by the hospital, and they should have been given tangible support from the hospital. 4.3.2 Treatment
A striking feature of the interview narratives was that even those patients and carers that were highly satisfied with their care and treatment tended to have experienced elements which had not gone well, or errors that had been made. These events, in themselves, were Page 98 of 230 54 not enough to overshadow their generally positive perceptions. For example, Hannah (one of the ‘highly satisfied’ interviewees) experienced two occasions of being told, in error by nurses, that her MRI scans were ‘fine’, to then be contacted by a consultant and be told that the scans were inconclusive and further investigations were needed. Despite these mistakes, Hannah still described the department as being a ‘well-oiled machine’. From such examples, it was clear that patients could be very forgiving of errors in situations where there were no overtly negative outcomes and where their overall experience remained a positive one. In contrast, interviewees who experienced complications and errors, in conjunction with either poor outcomes and/or other elements of negative experience, such as receiving poor quality care, could not excuse mistakes so readily.
4.3.2.1 Referral, diagnosis and treatment plans
4.3.2.1.1 Referral
A critical point at the start of an individual’s cancer journey was the point of referral from GP to CHUFT. In their interview accounts, participants discussed the timeframe within which this occurred and how perceptive GPs were considered to be during this critical period. It was considered crucial that GPs listened to patient concerns, took them seriously and responded with a swift referral, if required. In cases where the referral process was prolonged, interviewees tended to feel dissatisfied with the process and that their cancer diagnosis had been delayed.
In cases where referral had not been swift, some patients also reported feeling that they had been ‘fobbed off’ by their GP, or that they had been otherwise poorly treated. They felt that they were ‘wasting the GP’s time’. In such cases it was felt that GPs should have acted to instigate further investigation of patient complaints, through referral processes, at an earlier point:
I felt like I was being fobbed off by the GPs, I was reluctant to keep on going back because I’d been there six or seven times, and the first five times I was made to feel a little bit like “I don’t see why you’re still here, we gave you something, we’ve told you that we think it might just be something to do with your coil, we’ve scanned it”, and I was told everything was fine. (Hannah, gynaecological cancer patient)
In contrast, in cases where referral was perceived to happen quickly, this seemed to get patients’ journeys off to as good a start as possible, with interviewees feeling happy and satisfied with their care at this point:
I was impressed with the doctor straightaway, how quick she got everything sorted out down here, got me the appointment at Clacton Hospital, because it was the following week, I think, I got the appointment…for her to really get stuck in and to move things on, to get the ball rolling so fast, I was quite impressed really! (Katherine, gynaecological cancer)
Page 99 of 230 55 There was also a case of a patient being given the all clear at an appointment and the following morning he received a phone call asking him to return to the hospital. The patient returned, to be informed that the wrong patient’s results had been given to him and that he did actually have cancer. In this case the interviewee described how the experience of receiving cancer services at CHUFT had got off to the worst possible start.
In contrast, others had much more positive experiences of receiving their diagnosis, and commented on how professionally and sensitively it had been done:
We went off to Essex County [Hospital] and we spoke to the consultant there, who was a very, very nice man, very sympathetic, very empathic, and I remember he boosted Rachel’s confidence because he took her hand and he said, “we’re going to make you better”. He told us that the cancer couldn’t be cured but he was confident that they could push it into remission, and so he said that Rachel would start a series of chemotherapy. She asked lots of questions and she was given lots of information. (Michael, husband of Rachel, lung cancer patient)
4.3.2.1.2 Adequacy of information
It was considered critical that patients should be given as much information as they wanted about their cancer at the same time as they were given their diagnosis i.e. exactly what kind of cancer they had and what this meant for them, in terms of likely outcomes. It was important that patients should be asked how much they wanted to know, as the degree of detail that people wanted could vary considerably. For example, one of the interviewees explained how they had specifically asked not be told what stage their cancer was at, whereas for others it was very important to know as much as possible. In cases where communication was not detailed enough, this had the potential to lead to communication problems later on. For example, Lydia, a breast cancer patient, was simply told that she ‘had breast cancer’ at her diagnosis appointment, not what stage it was at; she only found out at a later appointment that she actually had multiple tumours in the breast, after believing that she only had a single tumour. She described feeling very shocked when she found out she actually had multiple tumours and how this contributed to her lack of confidence and satisfaction with her care at CHUFT.
4.3.2.1.3 Open, honest communication: promoting trust and managing expectations
The manner, and level of detail, with which diagnosis news was delivered was not the only important aspect of delivery. Also important was that patients felt they had been spoken to openly and honestly, specifically in terms of what the cancer meant in terms of life chances and how easy, or not, it would be to treat:
He was hopeful that he had managed to get all of the cancer cells, although only the biopsy would indicate that. And that she would have chemotherapy, but hopefully that would just be belt and braces. But he didn’t pull any punches; he told us “of course, there are no guarantees”. (Mark, father of Emily, lower GI cancer patient) Page 100 of 230 56 Nobody ever promised us he would survive, no one ever told him “you’re not in a bad place”, no one lied to us about that. I really wanted them to lie to me and he wanted them to lie to him, but of course they don’t – but that helped us get through it, because we knew when we were told things, it was the absolute truth and… nobody pretended to have all the answers, nobody pretended that it was an easy journey, everyone told us this was going to be difficult and I think that’s a really good thing. (Linda, wife of John, upper GI cancer patient)
In cases such as these, where interviewees felt they had been communicated with honestly, they felt more inclined to put their trust in the hospital and the care they were receiving.
There was some discussion about how easy it was to interpret the information provided by doctors, in terms of what it actually meant for patient outcomes. For example, Emily’s parents discussed how the doctors involved in her care used ‘a code’ that they did not understand. They discussed how they never knew, until very near the end of Emily’s life, that her cancer was terminal, as this was never explicitly stated, and how they had been too frightened to ask blunt questions about her chances of survival. They suggested that doctors may have been using ‘the code’ to try to convey the severity of the situation:
We didn’t want to know, that’s the truth … They’re telling us what they think we need to know, if we had asked “Is this terminal, is she going to die?” no doubt they would have said, “Yes, I’m afraid that’s the case”. (Mark, father of Emily, lower GI patient)
From experiences such as those of Emily’s parents, it can be seen that a key part of effective honest communication could be the managing of patient and carer expectations about expected outcomes, especially in terminal situations like Emily’s. This may be a particularly challenging and uncomfortable aspect of doctor/patient communication, but one critical to providing good quality care.
4.3.2.1.4 Developing treatment plans
Interviewee experiences of involvement and consultation about their treatment plans varied considerably. In cases where patients were satisfied with their treatment, they tended to discuss their plan in personalised terms, outlining how they had a clear sense of being consulted about what would happen. Their treatment had been fully explained to them, and they had been given the opportunity to ask questions and discuss options. In contrast, in cases where interviewees were dissatisfied, they stressed how they were told what their treatment plan would be without having the opportunity for discussion. In such cases, ‘partnership working’ was lacking, and people were left feeling that they had simply been told what would happen to them:
We saw a doctor who very, very badly explained to Mum that she would have to have chemotherapy followed by radiotherapy, spoke about what would happen, didn’t really give Mum much time to ask questions or to think about it. We weren’t given any choices…it was just all very boom, boom, boom, “this is what will Page 101 of 230 57 happen”… There was no time to talk about what Mum felt, you know, whether there was any other option. (Barbara, daughter of Eileen, breast cancer patient)
Sometimes it doesn’t matter what you say, they’ve already made their mind up what they’re going to do, that’s it… it’s a waste of time going to the appointment because, if they already know what they’re going to say to you and what they’re going to do, they might as well write a letter and say “this is the plan”. (Fred, bowel cancer patient)
He should have been allowing me the options, and he should have talked through the options, like a human being. He should have said, “You can’t really have laparoscopic prostatectomy because of… ” He didn’t. All these different ones that you can get, radiotherapy, he didn’t explain any of that to me, as to what it would entail… (David, urology cancer patient)
In one case in the sample, the poor communication process and lack of proper discussion about treatment options had significantly contributed to the patient deciding to receive treatment elsewhere. In this case the patient was initially told at his diagnosis appointment about a range of different treatment options that would be open to him, and he was asked to consider his options. However, after doing so and returning to the hospital, his consultant informed him that he recommended only one course of action, without any explanation as to why this particular course of action was recommended. The consultant was unwilling to engage in a discussion with the patient.
In other cases, interviewees described needing to conduct their own research and gather information about treatment options. In such cases, people could feel let down that more information was not directly provided to them. For example, Linda described how she and John (upper GI cancer patient) received inadequate information upon which to make decisions about treatment options, and as a result Linda had conducted her own research to help them decide where John should have surgery:
I researched it online, I researched the surgeon, I researched the results… we had to find all this out for ourselves… Although our experience on the whole was good, it took an awful lot of proactive work on my part to phone people, to get information from people… I’m not saying that the information wasn’t available to us at Colchester General [Hospital], I don’t know, but it wasn’t given to us and we weren’t told where to go and find it. (Linda, wife of John, upper GI cancer)
In cases such as these, the patients and their carers wanted the flow of information to be from the hospital to them, rather than them having to search for the information from the hospital and other sources. This might be considered an especially problematic issue for more vulnerable patients who may lack the support necessary to seek out information in this way.
Page 102 of 230 58 4.3.2.2 Pain relief
A number of our participants had concerns about how effectively patients’ pain relief needs were managed. For example, Emily’s parents described how she was ‘in pain all the time’, and would sometimes have to wait long periods of time before eventually she was administered pain relief. In other cases, patients were in such considerable pain, which was not being managed by the hospital, that they had resorted to phoning relatives in search of help:
Harry She said “you need to get here, I’m in a terrible state, they’re not doing anything, it’s getting worse”. So up I go and I see her, she’s in a terrible state. You came up as well…?
Gemma Yeah, I had a day off. We went straight up there, and she was in so much pain. To have to call you when she’s in pain on a ward is just barbaric.
(Harry & Gemma, relatives of Pearl, deceased pancreatic cancer patient)
Where patients reported their pain was well managed, their satisfaction with treatment and care was more generally positive. In contrast, in cases where patients and/or their carers were dissatisfied with the management of pain, this tended to correspond with a much less satisfied experience overall. There was dissatisfaction with the processes around the administration of pain relief, centred on this not being fast enough, and/or on the existing systems not being robust enough to adequately meet patient need. A situation that was often mentioned was of patients in a hospital bed, in pain, ringing buzzers to request pain relief, and having to wait for long periods to be responded to and then having to endure a further wait before finally receiving the pain relief requested. In some cases, it was reported that staff who responded to buzzers did not have the authority to administer drugs, and patients were told to ‘just hold on’ until the drugs round started. Such situations were experienced as highly frustrating, especially by patients and their carers who had previously managed their own pain relief at home:
Nine times out of ten, when you buzz, the person who comes cannot help you and doesn’t bother to pass [the request] onto the person on duty; all they do is turn off your buzzer. (Excerpt from Emily’s hospital diary)
I would say “Can you get this for Rachel?”, “Yeah, we’ll be there in a minute”. So half an hour would pass, Rachel becoming more and more uncomfortable, and I would go out and ask again: “Oh yeah, we’ll be right with you,” and then someone would come in and say “It’s only 30 minutes to the drug round, can’t you hold on?”. It’s as though they didn’t understand cancer, the pain it can cause, and I used to say “No she can’t wait; she’s got to have it now”. (Michael, Rachel’s husband)
The administration of drugs was felt to be even more problematic at night-time, when there were fewer staff on duty and, therefore, fewer people with the authority to administer controlled drugs. In such situations, systems were put in place for patients to self-administer Page 103 of 230 59 drugs. This could, however, prove to be problematic in cases where such arrangements were not adequately communicated between staff, and patients ended up having this permission removed:
There’s a problem… at night they needed two nurses to sign off controlled drugs, there are only two nurses on, so if one of them is caught up with an emergency, let’s say, the patient doesn’t get the controlled drug. So they came up with the idea that she could self-administer… that was the idea, but the trouble is that people came on duty and they didn’t know this. (Helen, Emily’s mother)
For some carers the frustration of watching their loved one experiencing pain, and being unable to quickly obtain the pain relief they needed, was unbearable to watch. In one such case, a carer had felt compelled to retain a supply of drugs when their loved one was admitted to hospital so that they could provide the drugs they needed in order to guarantee their comfort whilst in hospital.
4.3.2.3 Clinical errors
Unfortunately, a number of clinical errors were discussed during the interviews. Two examples are outlined below. One is a case where inadequate checks were conducted on a patient pre-surgery, and the other is a case where a lack of patient monitoring post-surgery meant that serious complications went undiagnosed:
William – inadequate pre-operation assessment
You don’t expect a mistake when it comes to cancer… I just think it wasn’t diagnosed properly, there wasn’t enough tests done before the first op and, I think if he’d been tested properly and looked at properly, including a physical examination, they’d have known where the tumour was. (Claire, wife of William, Lower GI cancer patient)
William was scheduled for an operation to remove a cancer tumour but, when it came to the operation, the surgeon was unable to conduct the surgery as the tumour was not where it was expected to be. Prior to surgery, William had not been physically examined. After being ‘opened and closed’, William was informed that, had a pre-operation physical examination been conducted, the surgeon would have been able to feel where the tumour was.
The operation was rescheduled, and everything went as planned and the tumour was removed. William did, however, end up with a colostomy bag, which he might not have needed had the first planned surgery of taken place.
William’s wife Claire described how she is very emotionally shaken by the experience, and it still affects hers and William’s day-to-day life. She believes that, had the pre-operation assessments been properly conducted, her husband would not have had to go through an unnecessary operation, and he would not have had to have a colonoscopy bag. She is waiting to be given a satisfactory explanation as to why such a mistake was able to occur.
Page 104 of 230 61
Gary – lack of post-surgery monitoring
When the handover occurred, between the first and the second operation, something went wrong there. I assume it was the people taking over that didn’t follow up, because, when you’re leaving to go on holiday, you leave instructions and off you go, don’t you? If they’re not followed up on, the fault tends to be with the person taking over. (Gary, lower GI cancer patient)
Gary underwent surgery to remove a tumour. Post-surgery, he was not feeling well and informed ward nurses of this. They reassured him that it was just the drugs wearing off and that it was quite normal to be feeling unwell. The following day, Gary was feeling a little better and his consultant came to see him to let him know that he was going on leave and that his care would be handed over to another consultant who would be monitoring Gary closely. Later, Gary started to feel very unwell again, and Gary’s family informed nurses and requested that a doctor see him. They were told again that his feeling unwell was normal and no doctor was called for.
By the third day post-surgery, Gary was feeling increasingly unwell and, at this point, Gary’s daughter insisted that he be seen by a doctor. The doctor sent Gary for x-rays, reviewed these, and Gary was quickly sent to the operating theatre. It became apparent that there were significant post-operation complications and that poison was leaking into Gary’s system. He had septicaemia. Gary’s emergency operation was performed by the consultant in whose care he had been placed for careful monitoring. This was the first time that the consultant had seen Gary.
Gary went into shock during the emergency operation and was critically ill. His family were informed that he had a 40%60% chance of survival, and Gary was placed into intensive care.
In the above cases, the interviewees felt strongly that clinical errors had occurred, and the interview sample included further cases where serious clinical errors, involving significant delays to patients receiving the treatment they required, were discussed. In such cases, interviewees described the unnecessary distress and pain that had been caused by treatment delays, either because their case was deemed to be ‘non-urgent’ or because certain procedures were not conducted at weekends. One interviewee made the following statement about their deceased relative’s care:
This whole week was hell, she’s in pain, she’s got cancer, she didn’t need that extra week of pain… somebody who’s got a short amount of life to live, you don’t leave them for a week in pain. (Gemma, Pearl’s daughter, deceased pancreatic cancer patient)
Problems were reported about delays in patients receiving the treatment they required. The feeling was that it was more important to adhere to standard hospital procedures than it was to treat patients as individuals, assessing their needs accordingly. In one case, a patient contracted a post-surgery bacterial infection and was given a course of antibiotics. This first course did not work, so he was then given a series of different antibiotics which also did not work. Finally, he was given a mouth swab and, once the results were back, the patient was
Page 105 of 230 60 given the correct type of antibiotic. He queried why it had taken over a month for a swab to be taken and was informed that it was standard procedure for the most common antibiotic to be prescribed and then, if that did not work, to be given the next most common, and so on, until something did work. The patient was very disappointed with his treatment, and felt that his recovery from surgery had been complicated, and ultimately delayed, by the lack of quick treatment for the bacterial infection.
Not all cases of potential clinical errors were as clear cut as those discussed so far. In other cases, people were left feeling unsure as to whether appropriate treatment had been delivered or not. For example, in one situation, an interviewee, upon her husband’s death from a secondary cancer that went undiagnosed for a significant length of time, was left questioning why the cancer had not been detected at a much earlier stage:
I don’t want to think that anybody’s negligent, I can’t imagine that anyone was negligent, I really can’t. I’d just like someone to tell me, if it’s a freak, I don’t know, why wasn’t it picked up? He was scanned, all sorts of things done to him, why wasn’t it picked up… it killed him that quickly? (Linda, wife of John, deceased upper GI cancer patient)
In situations where patients felt they had not been treated well, and complications had not been investigated and addressed properly, patients were prone to be left feeling dissatisfied with their care and somewhat powerless.
4.3.2.4 Listening to patients
A key way that potential complications could be detected at an early stage was through listening to patient and carer concerns. For example, in Gary’s case, detailed in the box above, if nurses had alerted a doctor to his feeling unwell at an earlier stage, perhaps his complications would have been detected more swiftly. Fred also had a negative experience post-surgery of not being listened to when he alerted staff to feeling unwell. Like Gary, serious complications had occurred and by the end of the week Fred was very seriously unwell and was rushed for emergency surgery. Unfortunately, the interview sample included other cases of healthcare professionals not listening to what patients and carers were telling them, such as in Eileen’s case detailed below.
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Eileen’s care – concerns over pulmonary embolism not being responded to
Eileen complained to her daughter, Barbara, that she had been experiencing some pains in her legs it felt like her veins were hurting. Barbara was concerned that it could be a pulmonary embolism, so, the next day, at Eileen’s chemotherapy appointment, they explained to the doctor the symptoms and their concerns that it was a pulmonary embolism. The doctor told them it was phlebitis.
The following night Eileen was very unwell and phoned Barbara in the morning to tell her that she could not breathe properly. An ambulance was called and Eileen went to the hospital. She was diagnosed with a pulmonary embolism with several clots on both lungs.
4.3.2.4.1 Updates on patient progress and treatment
It was essential to patients and their carers that they were kept regularly informed about how their treatment was progressing and whether it was following a plan. Being kept informed provided reassurance to patients and their carers that they were being looked after properly and that their care was under control. Patients tended to feel satisfied, in this regard, when they received regular updates, without having to chase. Our sample included examples of regular updates being given to patients by both consultants and nurses:
The consultant kept in regular contact with us…I thought I was going to be waiting ages for them to give me some sort of update, but I never was. He gave me indications during the radiotherapy, “Without getting too ahead of ourselves, its working better than I planned”. (Hannah, gynaecological cancer patient)
In situations where patients and their carers were not kept updated about how treatment was progressing, this was experienced as being very upsetting and frustrating. Carers, especially described having to be persistent at chasing information, and how this could be a very difficult thing to do when they just wanted to focus their energy on providing emotional support for their loved one:
We couldn’t get hold of nurses to talk to, found it very hard to get hold of the doctor. In the end we bypassed the ward and went directly to Dr Hurd’s secretary and spoke to her, because we just couldn’t get any communication from the ward about what was happening with Mum, whether there was going to be any treatment, whether they were looking to do any more to discover what was wrong with her. (Barbara, daughter of Eileen, breast cancer patient)
A further issue discussed, in relation to ongoing communication, was how direct doctors were in speaking to patients and their carers about challenging situations, in particular where there was uncertainty about what course of action to take next. In cases where there was a lack of certainty about a condition, and/or where tests were inconclusive, it was felt that clinical information was not always communicated to patients and their carers as Page 107 of 230 63 transparently as it should have been. Interviewees reported that being told ‘we’re not sure what to do next’ was far more preferable to not having any response to their questions.
In situations where patients and/or their carers felt there was a lack of a clear sense of direction in their treatment, their treatment could feel chaotic and, as a result, they tended to feel dissatisfied and confused about what was happening:
She was seeing different doctors, and getting a different story and different options, and it got to the point where she certainly didn’t know what was happening, and we didn’t. (Mark, father of Emily, lower GI patient)
Some interviewees had experiences with consultants who ‘really listened’ and were sensitive to their patients’ communication needs. This was discussed in the context of consultants recognising how best to communicate with and get across information to their patients in the way that they wanted. For some patients, they wanted their carer to be given the detailed information about their condition and treatment, with them preferring to just know the minimum. This patient-centred approach to communication was highly praised:
That’s the one thing I will always say about my consultant and my nurse, they know me well enough to know don’t overload me with information because I won’t take it in. They’ll speak to my mum or my husband, [who will] ask me what I think and things like that. (Hannah, gynaecological cancer patient)
He was fantastic, he was really good, his people skills were very good, he knew what John was like, he recognised that John couldn’t deal with it and he didn’t push it… he dealt with me. He recognised that straightaway. (Linda, wife of John, upper GI cancer patient)
In the above case, Linda and the consultant developed a partnership approach to providing the best care for John. When John’s cancer returned and Linda was informed, the consultant listened to Linda’s views and agreed with Linda’s assessment that it was in John’s best interests not to be informed that his cancer was terminal and that he did not have long to live.
4.3.2.4.2 Good communication reassures
A key impact of good quality communication between the hospital and patients/carers was that the latter felt reassured throughout that the patients were receiving the right treatment, which followed a managed treatment plan, that any problems would be identified, and that care would be available as and when required. Patients and their loved ones wanted to put their trust in the hospital, and having a key contact to take questions and concerns, and receive a speedy response from, was considered an effective mechanism to foster trust and faith in the hospital. Frequently it was the cancer nurse specialist who would occupy the key contact role, and the care and communication they provided was often highly praised.
Page 108 of 230 64 You can call her and she’ll answer… you know that any problems, you’ve just got to phone her up and she’ll put you right about anything… it’s nice to know you’ve got a backup group behind you, sort of thing. They’re always there. If something went wrong now, I know I’ve just got to phone them up and I can guarantee they’d say, “Right, get him here”. (Alice, wife of Peter, urological cancer patient)
In cases where interviewees were dissatisfied with the quality of communication, and confidence in the hospital was lost, patients and their carers tended to have either not had a key contact assigned to them or to have not had a relationship with the person named as their key contact. For example, in instances in the latter, interviewees commented that they did not feel that their key contact really ‘knew who they were’. In these situations, patients and/or their carers did not know where to address questions and concerns.
In other cases, interviewees reported feeling frustrated when they had got in touch with their key contact only for their concerns not to be responded to in a timely and/or reassuring manner. For example, it was described as particularly frustrating not to be able to get through to key contacts directly and to only be able to leave an answer phone message. This could result in the caller feeling alone and vulnerable, and could decrease their satisfaction levels with the care and support they received from CHUFT.
If you phone someone, they were like “she’s on holiday”, and then you’d phone up and get “she’s really busy, I’ll get her to phone you back” and you could leave a message and she’d phone you back but maybe a couple of days later and, by that time, the feelings that you had then or your questions have been answered by somebody else. (Claire, wife of William, lower GI cancer patient)
4.3.2.4.3 Improving communication
Interviewees that were unhappy with communication with the hospital were asked what could have been done to improve this. There was a feeling that higher staff-to-patient ratios would mean that communication could be more tailored to meet individual patient need. For example, patients could be asked how often they would like to be contacted and what forms of support they would like to access. In addition, higher staff numbers, particularly of cancer nurse specialists, would increase the chances of patients getting through to somebody when they telephoned, rather than having to leave messages.
I see that there’s not enough of them because clearly Shirley can’t be everywhere can she? You need more Shirleys if you like! (Harry, husband of Pearl, pancreatic cancer patient, discussing the need for increased numbers of cancer nurse specialists)
Page 109 of 230 65 4.3.2.5 End-of-life care
In this section, the findings on end-of-life care are presented. The interview sample contained eight carers and, of these, seven had lost their loved ones to cancer. At the time the sample was selected it was only evident that four of these had deceased. The deceased patients had died in a variety of settings: in hospices, at home, in a care home and at Essex County Hospital. From these accounts of end-of-life care, the following factors were described as being critical in determining the quality of care delivered during this sad and distressing time:
1. Management of pain relief. 2. Clear communication about the care plan and about the patient’s proximity to end- of-life. 3. The provision of patient-centred care.
Before discussing these three issues further, we present a case study which details Pearl’s end-of-life care experience and highlights how critical it is that these factors are addressed appropriately in cancer patients’ end-of-life care.
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Pearl’s end-of-life care
Following a deterioration in Pearl’s health, she had been readmitted to a hospice, and Harry (Pearl’s husband) and Gemma (Pearl’s daughter) thought that this is where she would remain until she died. Nobody could put a timescale on how long Pearl had left to live but it was not thought to be very long.
After Pearl had been in the hospice a week, Harry and Gemma were informed that the hospice was looking to move Pearl into a nursing home as she had stabilised and the hospice prioritised unstable patients who were fast approaching the very end of their life. Harry and Gemma were surprised by the news that Pearl was to be moved, as the prioritising system operating at the hospice had not previously been explained to them. In addition, Pearl had stated that the hospice was her preferred place of care, and she was very distressed at the thought of having to move out of the hospice.
Harry and Gemma were told that they would be given a choice of three nursing homes to go and look at. However, in the event, they were just given the option of one home, which was a 45 minute journey from their home. After a meeting between the hospice bed manager and Gemma, it was decided that Pearl could remain in the hospice ‘till the end’. The news was given to Pearl that she could stay, and Harry and Gemma left the hospice on the Friday evening thinking that Pearl’s end-of-life care was settled.
Harry went to visit Pearl on the Monday and was informed that they would still have to move Pearl. Unsurprisingly, Harry and Gemma had now lost faith in the hospice, and Harry complained to the hospice director about the poor communication that had taken place and about how let down they and Pearl felt. Harry asked what would happen if they refused to move Pearl from the hospice, and the director informed him that they would just ‘keep badgering her’ until they moved her. Harry and Gemma did not want Pearl to be repeatedly upset and unsettled by the pressure to move her, and agreed to move Pearl.
At this point, they were again offered just one choice of nursing home, but Gemma happened to have a friend who worked in a nursing home who had told her that they had a palliative bed space available. Gemma and Harry went to look at the two homes and decided that they wanted Pearl to go to the nursing home that Gemma’s friend worked at, as they felt the home offered by the hospice would not provide good quality care. Pearl was admitted to the nursing home where she stayed for a period of 11 days before passing away.
This example illustrates how critical it is that patients and their carers are communicated with honestly, so that expectations are managed. The importance of communication, along with the other critical factors in end-of-life care will now be discussed.
Page 111 of 230 67 4.3.2.5.1 Management of pain relief
As might be expected, managing pain at the end of a patient’s life was considered critically important to carers. Unfortunately, there were examples of carers experiencing difficulties in getting their loved ones the pain relief they needed. For example, in Linda’s case, in caring for her husband John at the end of his life at home, the responsibility to collect pain relief prescriptions rested with her, as nursing staff could only issue prescriptions rather than deliver the medication. Living in a rural area with limited open chemists nearby and not wanting to leave John at this critical time, it proved difficult for Linda to find ways to obtain the medication:
I had to rely on neighbours to go and get it, it was very difficult. I understand they can’t give the prescription, but that’s something else. I’m nursing my husband at the end of his life, he’s going to die any minute, and he needs that morphine. They’ll inject it but they won’t supply it, and I found that quite difficult because this is a rural area, the chemists close about 5. There is always one open, but it’s quite a long way away. (Linda, wife of John, deceased upper GI cancer patient, died at home)
She did get into a bit of a state in the early hours of the morning, of the day she died, and perhaps she could have been seen to a little quicker there – but the whole of the staff were engaged in something more terrible; how can you drag someone away from one dying person and say the other dying person is more important? (Michael, husband of Rachel, deceased lung cancer patient, died in a hospice)
4.3.2.5.2 Clear communication about care plan and time lines
There was discussion about how high-quality communication became increasingly important to patients and their carers as the end-of-life approached. This was felt to be particularly important when carers were being informed about the patient’s care plan (for example, whether or not they were on the ‘Liverpool Care Pathway’20) and about the estimated time that patients had left to live. In relation to both of these issues, carers described how they wanted information to be given to them in a clear, honest manner, and that, in the case of remaining life expected, estimates given should be relatively accurate.
In cases where carers did not feel well communicated with during this distressing and confusing time, they could be left with troublesome unanswered questions after their loved one had passed away. For example, Linda felt that she had not been communicated with clearly about whether her husband John was actually on the ‘Liverpool Pathway’ or not, and
20 The Liverpool Care Pathway was a policy introduced by the NHS with the intention of supporting dying patients, by withdrawing some unnecessary medical intervention and allowing people to die with dignity. However, following a number of high-profile allegations that patients were placed on the pathway without their consent or their friends’ or family’s knowledge, it is currently being phased out and replaced with an individual end-of-life care plan.
Page 112 of 230 68 about how long he had left to live. At first she was told that he had three months to live but on the next day she was told that he had just 24 hours:
I saw he was dying with my own eyes. I was told three months, then I’m told 24 hours in the space of 24 hours. And then all these people were coming, end-of-life nurses and all the rest of it and I’d never noticed that they weren’t actually feeding him at all…no one said to me, that’s what they were doing, I presume that’s what they were doing, maybe they weren’t doing it, I don’t know. (Linda, wife of John, deceased upper GI cancer patient, died at home)
4.3.2.5.3 Patient-centred care
The carers whose loved one received their end-of-life care in a hospice or care home setting were generally full of praise for the care delivered in these settings, and contrasted this care with the care that their loved one had received at Colchester General Hospital. The four interviewees whose loved ones died in hospices or in a care home described how personalised the care was. Care was focused on, and tailored to, patients’ and their carers’ needs and staff were described as ‘going out of their way’ to listen to patients and carers and meeting their needs and preferences:
While she was on the ward, there was this fixation on getting Mum home, they didn’t seem to take into consideration how much Mum’s condition had deteriorated, and they didn’t seem to notice how poorly she’d got in the time she was with them… she had her last week in a hospice, where she passed away. But she had a good last week… They talked to Mum, they listened to her… they did care. (Barbara, daughter of Eileen, deceased breast cancer patient, died in hospice)
Sadly Emily was so ill that she didn’t want anything much but, if she’d have been a little better, she would have been able to choose whatever she liked … she had a thing about mangoes, they got mango for her, various things, she wanted porridge with brown sugar and evaporated milk, I took it in but they’d already bought it for her, they really went out of their way. (Helen, mother of Emily, deceased lower GI cancer patient, died in hospice)
While Jacob was overall dissatisfied with his mother’s care, on a positive note he did mention that the care individual nurses had provided was good. However, he had been left feeling that his mother Beatrice had been ‘processed’ through the hospital system and not treated as an individual:
I think there’s a certain dignity in the way things are done and I don’t think it was done well enough to be honest. My family felt it wasn’t particularly well handled; we were shocked at the way she was treated. (Jacob, son of Beatrice, deceased lung cancer patient, died in hospital)
The better quality of care provided in hospices was thought to stem from the greater level of resources they had available, their higher staff-to-patient ratios and the specialised nature of the care they deliver. This was in contrast to the much more strained hospital Page 113 of 230 69 resources and the more general purpose nature of hospital settings, including wards, where patients had very different care needs.
The hospice is different because it’s dedicated to what it’s doing, that’s all they’re doing… it’s there to help people at the end of their lives and it doesn’t do anything else… I think, maybe the hospital muddles too many things up together. (Mark, father of Emily, deceased lower GI cancer patient, died in hospice)
4.3.2.5.4 Communication – end-of-life
At this extremely sensitive time it was considered especially critical that communication was exactly right so that patients and their carers were explicitly told that the end-of-life was approaching, and supported in coming to terms with the news, and that they were given time to ask questions and to be reassured about how care would progress. Such sensitive communication was thought to be most appropriately delivered in face-to-face meetings, rather than through written information:
No-one said “I’m afraid Mr Smith, it’s now terminal”, they just said “It’s Stage 4 cancer” and left, and Rachel looked around and she was bewildered, she was quite shocked… she said “what’s Stage 4 cancer?” (Michael, husband of Rachel, lung cancer patient)
It just seemed like it was an endless string of pamphlets, if I’m honest. “This is the Liverpool [Pathway] Programme, this is how you deal with death”, an endless stream of leaflets… I think, personally, it would have been better for someone to sit me down and, although the doctors, don’t get me wrong, the doctor there was pretty good and sat me down, it just seemed like loads of glossy leaflets and not a great deal of doing. (Jacob, son of Beatrice, lung cancer patient)
A further issue mentioned by some of the participants, where their loved one had died from cancer, was to do with the accuracy of the timeframes given by consultants for how long the patient had to live. In situations where the timeframe proved to be inaccurate, this had the potential to cause carers distress due to them preparing for their loved one to be alive for the stated length of time.
4.3.2.6 Complaints
Nine of our interviewees informed us that they had either fed back concerns to hospital staff and/or had lodged formal complaints. Three official complaints were made to PALS, and other complaints, formal and informal, were reported to GPs, to Macmillan, to nurses and other care providers. One person told us that they were considering taking legal action. Decisions to make a complaint occurred in cases where patients and carers were dissatisfied with their own or their loved one’s care, and when their questions or concerns were not addressed through other methods. It was stressed that such decisions were not taken lightly, but were seen as a last resort, and not made for monetary gain. Interviewees told us how they wanted to feel that justice had been done, and how they wanted to make sense of Page 114 of 230 71 their experience. These decisions were only undertaken when patients were either in a well enough condition to do so, or, in the case of carers, when their loved one had passed away:
I’ve said to so many people, and nobody believes me, but this is not about trying to get money out of anybody, it’s not about compensation, this is about letting myself be heard, letting us all be heard, letting people with cancer be heard. (Claire, wife of William, bowel cancer patient)
Whilst I was in hospital, and the year after maybe, I just wanted to get everything behind me, I didn’t want to take anything further. My attitude a year ago was to get these things out of the way, draw a line and move on. There was no question in my mind of taking things further or doing anything of that nature. I wasn’t at that time well enough anyway… I don’t want to take any recourse, in terms of a legal thing, for the sake of it, I need to have a sense of ‘I’ve done what I can to understand why I’m where I am now’. (Gary, lower GI cancer patient)
Interviewees gave the following reasons for abandoning prior decisions to pursue complaints:
They had been given the all clear, and wanted to move on and put their experience behind them. They thought that nothing would be achieved. They were fearful of what the consequences might be for any future care and treatment.
In situations where interviewees had made formal complaints, or had seriously considered doing so, there was a consensus that doing so constituted a ‘waste of time’, in terms of what it would achieve.
There’s not a lot you can do, you can put in a complaint to someone if they want to hear but … I think she might even have done so at some stage, but you don’t make any headway, it’s a waste of time and effort. (Jacob, son of Beatrice, lung cancer patient)
Jacob had complained to PALS about his mother’s treatment and, in response, had received phone calls during which he was offered counselling to help him come to terms with his mother’s death. He found the focus on counselling, rather than on the content of his complaint, ‘annoying and patronising’. He was left feeling angry at this outcome. He felt that making a complaint had been a pointless exercise, as it would not have an impact on improving other patients’ treatment.
In other cases, interviewees had reached the conclusion that they ‘didn’t have the time to waste’ on making complaints during a period when they were either going through treatment themselves or supporting a loved one to do so. Instead they invested their energy on getting through their cancer experience, thereby avoiding becoming embroiled in another battle.
Page 115 of 230 70 There were cases where patients chose not to make a complaint because they were fearful of a lack of anonymity and the impact this might have on their cancer treatment and care. In cases where complaints had been made, interviewees discussed their fears:
I worry that they won’t give me as good treatment. I know that’s not the case but… I worry about my operation. (Lydia, breast cancer patient)
I felt vulnerable and, if it was bad, it could have been a lot worse by antagonising people that were, in effect, controlling my life at that stage. It’s very difficult to complain to someone who’s in charge of your life. So I did restrict my daughters a number of times, when making complaints about certain things, because I thought it would have a detrimental effect on me generally. (Gary, lower GI cancer patient)
Some carers reported feeling torn between the desire to lodge a complaint, which they saw as part of their duty in caring for their loved one and not wanting to add to the pressure that the NHS, generally, and hospital staff, specifically, were already under:
I hated myself for doing it because we can see people are under pressure and… generally speaking, we don’t want to add to that pressure…. We don’t want to add to that, but, on the other hand… I’ve got to do what’s required of me, it’s my responsibility to care for Rachel, so everything else has got to be put to one side. (Michael, husband of Rachel, deceased lung cancer patient)
4.3.2.6.1 Systemic issues: defensive culture?
Some interviewees reported that they had not felt that they had been listened to, nor treated as important, by the hospital and that a defensive culture permeated throughout CHUFT. For example, interviewees discussed how hospital staff had responded defensively to day-to-day questions and enquiries about care and treatment. In such cases, when people had prior negative experiences of highlighting issues, it led them to question how receptive the hospital would actually be to hearing more formal complaints:
Everyone was defensive a lot of the time. I got very little response to what I wanted and what I got was [reasons] why they couldn’t do it, no-one ever said “we’ll be able to do that, but what it will need is this”, they just withdrew behind some sort of wall of defence. (Michael, husband of Rachel, deceased lung cancer patient)
Some who had complained reported feeling that they were constantly ‘hitting brick walls’, being pushed from one department to another, with no one willing to take responsibility. Finally, there was a perception that the hospital would not be able to easily turn around its defensive culture, that it was too deeply embedded:
I don’t have confidence in the hospital… I feel that it’s just a mess, that they just go through the motions almost. I don’t feel that they could do anything, to be honest, no. I mean, people are people, attitudes don’t change. (Gary, lower GI cancer patient)
Page 116 of 230 72 4.3.2.7 Administration problems
4.3.2.7.1 Appointments
Four main concerns were raised in relation to hospital appointments:
1. The length of time patients waited to receive appointment details, and the chasing that could be involved in getting appointments. 2. The length of time that patients had to wait, on the day of their appointment, to be seen. 3. Patients not receiving details of appointments and/or not being informed about operations being rescheduled. 4. The suitability of face-to-face appointments, when passing different types of information to patients.
Interviewees tended to feel dissatisfied with the length of time they waited. Appointment times were not received within pre-notified timescales and they had to chase up appointments:
The waiting is the worst part. My breast scanner [the person who carried out the scan] did call me at work at the beginning of January to discuss stuff, and said ‘We will have our meeting hopefully this week, we will be able to get you a start date for your treatment, etc. It should be the week commencing the 16th, I think’. Then I never heard any more, so then I chased it up again, and she said ‘I’m sorry, it won’t be until the following week now’. Obviously, everything they say, you ‘take as gospel’ because you’re desperate. (Lydia, breast cancer patient)
In contrast, when people received details of their appointments when they had been told they would, they felt reassured that their treatment was progressing as planned. Interviewees discussed how, on the day of their appointment, they tended to experience longer delays the later in the day their appointment was scheduled. Some of the interviewees had waited particularly lengthy periods to be seen; in one case, a patient had waited an entire day to be seen, only then to be informed that he would have to return the next day. Experiences such as these could, unsurprisingly, make patients and their carers feel that they were powerless and unimportant to CHUFT:
He started about 12, his surgery. Should have started about 9. Our appointment was at 9 and we sat there till 12. It was three hours we had to wait, you’re right [gesturing to wife], it was a 9 o’ clock appointment and he never saw us till 12… I honestly just think, he had no real patient care. (David, urological cancer patient)
Every appointment was at least an hour late, there wasn’t once we were seen on time. I think, [at] the minimum, they were an hour late, sometimes longer. (Harry, husband of Pearl, pancreatic cancer patient)
Page 117 of 230 73 While interviewees acknowledged that the accurate scheduling of appointments was a difficult task, there was also a consensus that consistently having to wait for long periods constituted a poor service for cancer patients, especially for those who were feeling very unwell. The issue that was perceived to underpin long patient waiting times was inadequate numbers of staff to cope with the numbers of patients who needed to be seen in order for the hospital’s appointment timeframe targets to be met:
The problem was they had to get the numbers through; you’ve got to see somebody within a certain time and all that, force the numbers through. (Robert, husband of Dorothy, deceased gynaecological cancer patient)
Further administrative problems were reported. They related to poor communication, the accuracy of appointment details, and the need to chase the hospital to set up appointments. One patient reported not being sent details of their initial post-diagnosis appointment, and then receiving a phone call from the hospital asking them why they were not at the appointment. In this case, the patient’s carer had to ‘fight tooth and nail’ to get an appointment.
In other cases, patients reported that they had not been informed that operations had been cancelled and/or rescheduled, or that they were misinformed about whether they would need to stay in hospital following an operation. In such cases, administrative errors had significant impacts on patients’ and their carers’ lives, in terms of the pre-planning involved in ensuring that they would be able to attend their appointments (for example, arranging to take time off work), and, in the case of operations being cancelled, ensuring that patients would have adequate support and care upon discharge. As Alice, wife of Peter (urological cancer patient), commented about their situation following the rescheduling of Peter’s operation, ‘it’s not only the patient that suffers; it’s all the others… around you’. Unfortunately, in some cases where patients voiced their dissatisfaction about the accuracy of the communications they had received from CHUFT, and the problems this had caused them, these concerns were responded to defensively by hospital staff.
Patient records were also a cause of concern for some. In one case, a patient reported receiving correspondence from the hospital that referred to radiotherapy she had never received (it had been part of her original treatment plan). In another case, a patient never received a follow-up appointment following her mastectomy operation. The patient’s GP contacted the hospital a year after the surgery, to enquire why she had not been sent a follow-up appointment and to request that one be scheduled. When the appointment letter arrived, an apology was forthcoming and the patient was informed that she appeared to have ‘slipped through the net’. However, the follow-up appointment should have taken place three months after her surgery. The patient was left feeling distressed at the thought of what could have been missed in the space of the year during which she should have been seen. Other examples included a case of suspected falsified patient records, where the date recorded in the patient’s records for a procedure that had taken place was incorrect. The
Page 118 of 230 74 recorded date was the date when the procedure had originally been scheduled to occur. In fact, it had taken place a week later. Finally, in one very shocking case, a patient attended an appointment to receive a biopsy result and was given the ‘all clear’. She was called back the following day. She returned and was informed that they had been looking at the wrong patient’s records and that she did, in fact, have cancer.
4.3.2.7.2 Communication within CHUFT
There is a whole team of people that deal with you, and they should all know exactly, all the time, what stage she’s at and what symptoms she’s got; and it’s just not happening. (Olivia, mum of Lydia, breast cancer patient)
Interviewees reported that, for patients who received care from multiple departments and/or health care professionals within CHUFT, communication between staff and departments was poor. Emily’s case highlights the impact that ineffective communication could have on patient care:
Emily’s care
Emily’s parents, Helen and Mark, described how they felt that her care had suffered as a result of many of the administrative issues outlined above. In particular, they felt that too many health care professionals had been involved in her care, and that communication between them had been poor. In order to meet Emily’s pain relief needs, a process had been negotiated with the ward staff, whereby Emily was allowed to keep one painkiller on standby to self-administer so that she never had to endure pain whilst waiting for her buzzer to be responded to. Unfortunately, this was not communicated across the staff, so Emily had to keep explaining the process to new staff that came on duty. The outcome was that Emily and her parents became very frustrated at having to restate the agreed process, and they were left feeling that inadequate communication between healthcare professionals had negatively impacted on the quality of care that Emily received.
In other situations, patients were left feeling that different departments within CHUFT did not communicate at all, and such gaps in communication could result in patients ‘slipping through the net’ and being forgotten about. In one case, a patient had had a tumour identified after an emergency admittance to hospital. Upon the patient’s discharge, the patient was not followed up on, and the patient made repeated phone calls to eventually secure an appointment. This process took over a month, and resulted in a delay to the patient receiving their cancer diagnosis.
The outcome for patients and their carers who had experiences of poor communication between CHUFT departments and staff was that their confidence and trust in the quality of cancer care and treatment was seriously shaken. Those patients who did not have a ‘key contact’, or who did not have a very strong relationship with their key contact, seemed particularly prone to experiencing this problem. This might suggest that, without an internal Page 119 of 230 75 patient advocate, such as a cancer nurse specialist, overseeing their care, patients were more prone to get ‘lost’ and forgotten about within the hospital system:
It should all be fed back to one person, you should have somebody in charge of your case from start to finish, not necessarily a doctor, but someone where stuff is fed back to, and this will be your contact throughout your whole cancer journey. (Harry, husband of Pearl, deceased pancreatic cancer patient)
4.3.2.7.3 Communication with health care professionals outside CHUFT
In addition to concerns being raised about the quality of communication between professionals within CHUFT, some patients were dissatisfied with the standard of communication between CHUFT and their GP. Concerns were raised that GPs were not always kept up to date with where their patients were with their cancer treatment, and that it was down to patients and/or their carers to keep GPs informed:
She didn’t know what was going on; she relied on me going down there sometimes, telling her… I’m sure letters came through eventually, but she didn’t know what he was having, she didn’t know how often… She didn’t seem to be in the loop. (Linda, wife of John, deceased upper GI cancer patient)
4.3.2.8 Skeleton service at weekends & public holidays: ‘it’s a 4½ day a week hospital’
There was dissatisfaction expressed about the lack of consistency of service offered by CHUFT at weekends and during public holiday periods, such as Christmas and Easter. There was a perception that during these periods the hospital only ran a skeleton service (if any service at all) and that the quality of care offered was of a poorer quality, due to the decreased staffing numbers. It was felt that only emergency, non-routine work took place during weekends and holidays, and appointments were scheduled so as to ensure that patients were not booked in during these periods. One interviewee referred to Thursday as being ‘chucking out day’.
A typical problem experienced by cancer patients, owing to reduced service levels, was not receiving their scheduled treatment. For example, not being able to receive chemotherapy on public holidays, because the Mary Barron suite was closed on these days. In addition, hospital services, more generally, were perceived to struggle during these periods with, for example, clinics being completely closed and bed shortages becoming more of a problem, as in the case of Beatrice detailed below. Such problems were experienced by patients and their carers as extremely distressing, with people becoming concerned that delays to treatment and inadequate care would lead to their cancer progressing. As one interviewee candidly put it: Cancer don’t take holidays. It marches on. (Lydia, breast cancer patient).
Page 120 of 230 76
Beatrice’s care – no bed at Christmas
Beatrice, a lung cancer patient, had suffered a serious fall at home and had been taken to A&E. Beatrice needed to be kept in, and a bed on a ward had been searched for. Unfortunately, no bed spaces could be found, so she was admitted to A&E. The staff continued to ring around hospices to try and find a more suitable space for Beatrice, but none could be found. The only space that could eventually be found was in an old people’s home. Her son, Jacob, described feeling shocked that there were no other, more appropriate, bed spaces to be found for his mother when she was in such a vulnerable situation, at a very sensitive period of her life.
Page 121 of 230 77 5. Case Summaries In addition to our thematic analysis, we wanted to retain a sense of each individual and their particular experience. Also, immediately following each interview, Nicky McGuinness’ had written field notes describing the interviewee’s home/surroundings and anything observed as particularly noteworthy during the interview. One reason for doing this was to ensure that we had a fairly mixed sample in terms of social class and demography. While this was a fairly crude way to ensure social demographic variability, we had previously found that collecting survey information on the first four digits of a postcode provided little evidence of social class as it covered too wide a domain. However, we wanted some reassurance that our interview sample was not over represented by a particular socio-demographic group and that we had included a mix of people from more urban and more rural settings. Housing provides some indication of this and while there were no non-white participants in either our survey or interviewee sample, we felt reassured that our sample was otherwise reasonably well mixed. We then produced case studies to provide a brief overview of each participant’s case and combined this with the descriptive notes. Individuals were assigned pseudonyms at this stage. These cases are presented below. In order to further protect interviewees’ identities, we have removed household information and some details of their cancer journey.
Page 122 of 230 78 Interview Number: 8
Pseudonym: Hannah (patient)
Description Patient, cervical cancer, 1625, female, lives with husband & 2 young (carer/patient, children in parents-in-law’s converted house. type of cancer, age range, sex) Time period Diagnosed with Stage 2b cervical cancer April 2013, treatment period June–July 2013. She was informed she was in clinical remission in December 2013. Satisfaction with Extremely satisfied treatment
Satisfaction with Extremely satisfied care and support
Was a complaint Yes, but not about Colchester hospital. Hannah complained to her made cancer nurse specialist about the care she received at another hospital. She was not satisfied with their response that they couldn’t follow up because it was impossible to identify which staff the complaint referred to.
Summary of Hannah had a delayed diagnosis period – made at least five trips to the interview doctor because of heavy bleeding. Had internal examinations to be told that this was possibly due to post-birth trauma or connected to the birth control coil. Finally, a referral was made. Hannah felt she had been ‘fobbed off’ by GPs during this period.
Hannah has a very strong support network – husband, Mum, sister, and parents-in-law. Husband accompanied her to referral appointment but not into the room when she was given the cancer diagnosis. Hannah felt unsatisfied with her care immediately post-diagnosis as she was not given time to compose herself and was just left to go out to the reception to meet her husband, which lacked privacy.
Hannah did not want to know lots of information about her cancer but just the basics in laymen’s terms. She did not want to know what stage her cancer was until her treatment was finished. She received lots of support from a cancer nurse specialist who she described as amazing. She was also very complimentary about her consultant who she trusts and has complete faith in.
At some points of her treatment she was not sure why she’d been referred to another hospital, or what an appointment was for, but she went along anyway – didn’t ask too many questions and did not want to know details.
Page 123 of 230 79 Hannah received some exemplary bits of care – being given a choice where to have things done and made to feel like she was in control of her treatment. This was very important to her as she describes herself as a ‘control freak’.
When Hannah’s cancer nurse specialist first tells her about the support group, she doesn’t want to attend but, post-treatment, she goes along. She finds the support invaluable and members provide others to ‘cling to’. She is reflective about the value of groups and how they aren’t suited to everyone, or necessarily to a given individual at every stage of their cancer journey.
During her tests post-treatment, on two occasions Hannah was told that ‘everything is fine’, to then be told that actually things are less clear and more tests are needed to provide clarity. Despite these miscommunications, Hannah remains positive about her experiences stating that ‘it’s nice to have a good experience from something so horrible’. Throughout the interview, Hannah stresses that she feels treated as an individual not just a number, and that her concerns are listened to by staff who went ‘above and beyond’ in their treatment, especially the cancer nurse specialist.
At one point, Hannah receives poor treatment at Ipswich and her cancer nurse specialist lodges a complaint with them.
Page 124 of 230 81 Interview Number: 19
Pseudonym: Gary (patient)
Description Patient, colorectal – lower GI, 5165, male, lives alone. (carer/patient, type of cancer, age range, sex, who lives with) Time period Diagnosed 2011. Surgery to remove tumour 2012. Complications after and in hospital for the majority of 5 month period. Had ileostomy reversed in 2013. Satisfaction with Dissatisfied treatment
Satisfaction with Not very satisfied care and support
Was a complaint Question skipped in questionnaire. Various concerns but no formal made complaint (yet).
Summary of Gary underwent surgery to remove tumour in 2012. Post-surgery, interview Gary's surgeon was going on leave and let Gary know that he was handing his aftercare over to another consultant who would be monitoring his recovery. The day after surgery, Gary did not feel well and informed nurses but was told that this was normal post-surgery. Gary continued to feel unwell and his family insisted that a doctor see him. Up to this point, no doctor (including the consultant whose care he was now under) had seen him. A doctor saw Gary, complications were diagnosed and Gary was rushed into theatre for emergency surgery to carry out a repair. The surgery had to be abandoned, however, as Gary went into shock during surgery. Gary was then in intensive care for 10 days and in hospital for the majority of the next 5 months because of repeated infections and delays to recovery. He tried to leave hospital a few times, but ended up being readmitted because he was not well enough to be out. Very strong family support – someone with him at every appointment/every visiting slot.
Gary discussed 2 areas of error with his care: 1) not being monitored by a doctor after the initial tumour-removal surgery, and it taking a couple of days after Gary and his family reported that he was not feeling at all well before a doctor saw him; and 2) administration errors regarding information about when he would be released following a hernia operation.
Throughout the account, Gary describes how he feels nursing care on general wards should have been better, not just going through the motions, and he contrasts this with the care he received from cancer nurse specialists. Page 125 of 230 80
Gary describes how the cancer has now become just a minor part of his experience and he is left feeling that there are a number of problems with his care. He is currently considering his options with regards to making a formal complaint and is considering obtaining legal assistance to do so.
Page 126 of 230 82 Interview Number: 26
Pseudonyms: John (patient, deceased), Linda (carer)
Description Female carer whose husband died from upper GI cancer. Lives alone, her two sons are grown up and no longer live at home (one at university). Age group 5165. Working full time.
Time period Referred by GP in December 2012. John died Christmas 2013.
Satisfaction with Very satisfactory treatment
Satisfaction with Very satisfactory care and support
Was a complaint Not officially – spoke to consultant. made
Summary of John saw his GP for suspected indigestion and was quickly referred for interview an endoscopy. At the appointment he was told they had found something, and that it could be cancer. Appointment to see consultant who confirmed diagnosis and spoke through options for surgery. John was given a choice of where to receive surgery but not given information to help decide. They were informed the surgery would be difficult and a hard journey.
John had chemotherapy in Essex County Hospital prior to the surgery to reduce the tumour. He started chemotherapy and they were told over the phone about the possible side-effects. John received good care during chemotherapy. In March, John had to stop the chemotherapy due to ill health. He was well supported by his GP, who regularly saw John and Linda to keep her informed. Linda felt that she was heavily relied on as the hospital expected her to care for her husband when he was at home.
A scan confirmed that the tumour had shrunk enough for surgery. The surgery (performed at a different hospital) went well. John then had radiotherapy at Essex County Hospital. John’s health got better and he was seeing his work doctor about going back to work. In the meantime, John developed a cough which made him sick, and he saw locum GPs who prescribed antibiotics. The cough did not go away and John was deteriorating so Linda rang the consultant from Essex County Hospital in desperation. She was told he needed to be admitted and had to wait for a bed to become available. They were told not to let John be admitted to Colchester General Hospital. Hours later a bed was available at Essex County Hospital. When they drained his lungs, there was panic as they were filled with blood.
Page 127 of 230 83
In December 2013, the doctor confirmed that the cancer had spread to his stomach, and was untreatable. The consultant and Linda agreed not to tell John, but let him go home for Christmas; a note is put in John’s notes not to tell him. Later John phones Linda and tells him a staff nurse has told him his cancer is back. She persuades him that the nurse is incorrect. The nurse said she believes people have the right to know they will die. John then goes home on the Monday, and is given 3 months to live; on Tuesday the district nurse tells them he won’t make it through the night. John passed away on the Saturday. Linda experiences difficulties in being able to easily collect prescriptions for end-of-life medication and is dissatisfied with communication about why he died.
Page 128 of 230 84 Interview Number: 29
Pseudonym: June (patient)
Description Female patient who had treatment for breast cancer. In the 6675 age (carer/patient and group. Lives alone. Children grown up and have their own children. type of cancer) Husband deceased (died from cancer). Daughter also received treatment for breast cancer at the same time as June.
Time period Mastectomy in 2011.
Satisfaction with Satisfied treatment
Satisfaction with Satisfied care and support
Was a complaint No made Summary of June had a mammogram at the hospital and was asked to go back in interview she assumed for another one, but instead she had a biopsy taken. Three weeks later she went back in and was told sensitively that it was cancer and that it had spread to the lymph nodes.
In 2011 June had a mastectomy and later in the year returned to have the lymph nodes removed. Decided not to have reconstruction, but a prosthesis instead. Given leaflets for post-discharge after mastectomy. Was not contacted about prosthesis, so rang up key contact and got an appointment. Later in the year June had a hip replacement, and on seeing her GP realised she had not had a follow-up from her mastectomy. The GP phoned and subsequently June received a letter asking her to attend a follow-up. This was almost a year after her surgery, for what should have been a 3 month follow-up appointment.
June only saw the breast cancer nurse at the prosthesis fitting, and not since. June was disappointed that her notes had obviously got lost; she was not given appointments and felt abandoned. When June asked why she had been missed, she says the consultant blatantly lied to her about a ‘new system, leaving it to patients to contact them’.
June was unhappy with check-up appointments, as they were not very thorough. She did have one with a breast cancer nurse, in which the nurse spent more time examining her. The key contact did not know who she was, as they look after so many people. June’s experience in hospital after her hip replacement was negative. Nurses took a long time to answer her bell, and would not give her a bed pan. Told to dress herself, despite being in pain from her hip; she says this
Page 129 of 230 85 experience made her ‘bitter’. She said ‘they don’t make eye contact in case you ask for something’. Despite this, she was satisfied because her daughter was having good treatment for more aggressive breast cancer.
Page 130 of 230 86 Interview Number: 38
Pseudonyms: Helen (female carer), Mark (male carer), Emily (patient, deceased)
Description Helen and Mark’s daughter Emily passed away from lower GI cancer. (carer/patient and Emily was in the 2635 age group. type of cancer) Helen has previously had breast cancer. Time period Diagnosis 2013; Emily died 5 months later.
Satisfaction with Not very satisfied treatment
Satisfaction with Satisfied care and support
Was a complaint No made Summary of The interview was supplemented by extracts from Emily’s diary, which interview she kept during her early days in hospital.
Emily had a relatively late diagnosis she was symptomatic for about 6 months prior to diagnosis. Emily has an operation and is discharged but experiences some post-operation complications. Helen and Mark found it hard to find out where to go for help for example, the ward or to A&E. They initially had no contact person, so had to start all over again. Later in the care pathway, they insisted on having contact details for emergencies to ensure some continuity of care.
Emily was in two hospitals: Colchester General Hospital and Essex County Hospital (1 month) and then a local hospice (2 weeks) during the last few months of her life. Both Helen and Mark felt the two hospitals, were very different. They describe the care at Essex County Hospital as being more personalised, and that they also felt cared for. This contrasts with Colchester General Hospital, which is big, with lots of staff and where care is poor quality. The only point when Emily’s care at Colchester General improves is when Emily is admitted to the General’s A&E and is identified as an Essex County patient. At that point the General Hospital A&E staff rang Essex County and the good communication between the hospitals results in Emily being treated as Emily, a patient with a history, not just another patient in A&E.
There is an on-going theme about lack of communication between staff at Colchester General Hospital, too many staff providing care who do not communicate with each other, too many useless protocols (e.g. pain control), and a lack integrated care.
Communication does not seem to have been good with many of the
Page 131 of 230 87 staff along the way. Throughout the interview, Helen reads from Emily’s diary of her time in hospital, which records her frustration in trying to access pain control and get the care she required.
Page 132 of 230 88 Interview Number: 40
Pseudonym: Fred (patient)
Description Male patient who was treated for bowel cancer. In the 6675 age (carer/patient and group. Lives with wife. Retired. type of cancer) Time period First operation 2010. Since 2011 has been treated as an outpatient for complications – ongoing.
Satisfaction with Satisfied treatment
Satisfaction with Not very satisfied. care and support
Was a complaint Yes made Summary of Fred experienced a delayed referral from his GP and was told that interview problems were psychosomatic for approximately 18 months. Fred ended up being rushed to A&E with a blockage, a mass was identified and then he waited for an outpatient appointment for 6 weeks. Fred then has chemotherapy for 3 months as the tumour is too large to be operated on immediately. The tumour shrinks, so surgery proceeds. During surgery serious complications occur resulting in Fred staying in hospital for nearly 3 months, when he was originally told his stay would be around 1 week. During this period, Fred contracts an infection and is placed in isolation for some periods of time. Once discharged, Fred gets deep vein thrombosis (DVT) in one leg.
Following discharge from hospital Fred needs ongoing care in the community, but community nurses are not aware of how to care for him in terms of cleaning various drains and tubes. As a result, Fred has to return to hospital for further procedures.
Altogether Fred has undergone a number of operations and procedures to deal with the complications of surgery and has ongoing chronic health problems.
Fred has made complaints about his treatment but has not experienced satisfactory responses. He has not complained about individual people but wants some explanation about what went wrong with his original surgery.
Page 133 of 230 89 Interview Number: 41
Pseudonym: Barbara (carer – interviewee) & Eileen (patient, deceased)
Description Carer (daughter) of mother who died of breast cancer aged between (carer/patient and 6675. type of cancer) Time period Eileen’s breast cancer diagnosed in 2011; died in 2012.
Satisfaction with Dissatisfied treatment
Satisfaction with Dissatisfied care and support
Was a complaint No, as Eileen was scared that her care would be compromised. made Summary of Eileen’s breast cancer was detected at a mammogram and she was interview referred for a biopsy. When Eileen and Barbara went in to get the biopsy results, Eileen was given the all clear. The next day Eileen was contacted and asked to return to the hospital that day. Eileen and Barbara returned, and were informed that Eileen did in fact have breast cancer and she had been given the all clear the previous day in error, caused by the wrong notes being referred to.
Eileen begins chemotherapy after a lumpectomy and develops a pulmonary embolism (PE). The doctor at the oncology clinic dismisses the pains in Eileen’s legs and sends her home. Eileen was admitted the next day with PE.
Eileen was moved from Colchester General Hospital to Essex County Hospital, and is then discharged even though she could not walk too well and her chemotherapy is stopped because of the PE. Eileen’s GP does not realise that her chemotherapy has stopped. Eileen’s lung function then deteriorates and there is a lack of communication between healthcare professionals in primary and secondary care.
In the end, Eileen was referred from Essex County Hospital back to Colchester General Hospital to an isolation ward in case she had TB (diagnosis of TB uncertain at this point). After a week, Eileen is moved back on to the ward as it is established that she does not have TB but no other diagnosis is made. At this point it was difficult for Barbara to find out any information about treatment from healthcare professionals. Eileen remains on the ward, where her condition further deteriorates. She receives poor quality nursing care on the ward and never feels listened to. After four weeks, Eileen is moved to a hospice where she dies a week later. This last week was good as the hospice nursing staff were very empathic and caring.
Page 134 of 230 91 Interview Number: 68
Pseudonyms: Pearl (patient, deceased), Harry (husband), Gemma (daughter)
Description Harry and Gemma are the husband and daughter of Pearl, who died (carer/patient and from pancreatic cancer aged between 6675. Harry now lives alone. type of cancer) Time period Pearl was diagnosed June/July 2013; died 2014.
Satisfaction with Dissatisfied treatment
Satisfaction with Dissatisfied care and support
Was a complaint Letter to PALS & email to Clinical Commissioning Group. Complained to made variety of people at different stages of Pearl’s journey.
Summary of Pearl is referred by her GP, who sent her for a scan and pancreatic interview cancer was diagnosed. At this stage the care was good and Pearl was booked in for a confirmatory biopsy. When the consultant arrives to perform the biopsy, he tells Pearl there is ‘no point’ in doing the biopsy but provides no further information. Pearl is booked to see an oncologist a couple of weeks later; she turns up but as no biopsy was taken the appointment is a waste of time and so the oncologist organises a biopsy at another hospital. This confirms pancreatic cancer and chemotherapy starts. Communication is poor at this point.
Pearl develops jaundice and a stent is fitted; the jaundice remains, so Pearl is readmitted to change the stent, but she is starting to develop a further complication of fluid retention. Pearl is experiencing a high level of pain and Harry and Gemma request a meeting with her consultant who says he will get a drain fitted but nothing happens for a week. Eventually the drain was put in and Pearl is stabilised and a transfer to hospice care is requested, which the consultant agrees to. The nurses on the ward are sceptical about this, but Harry and Gemma insist and Pearl is taken to the hospice. Harry and Gemma believe that hospital records have been falsified regarding when drains were put in and so have made complaints.
The problem for this family is that things are agreed then never happen e.g. biopsy agreed, then doesn’t happen and they have to fight for it; hospice care agreed, then looks like it might not happen, so, again, they have to fight for it.
As Pearl’s condition deteriorates further she is again moved to a hospice and is stabilised, but then they want to discharge her to a
Page 135 of 230 90 nursing home as she is not at the end-of-life, but there are very limited beds. The family fights to keep her in the hospice. They are offered a place in a nursing home, plus palliative care, but the family are not happy with this choice and find a place for her in another home. She moves and passes away 11 days later.
Page 136 of 230 92 Interview Number: 81
Pseudonyms: Robert (carer), Dorothy (patient, deceased)
Description Male carer whose wife Dorothy died following treatment for (carer/patient and gynaecological cancer aged 6675. Lives alone, children and type of cancer) grandchildren live nearby.
Time period Dorothy was referred in 2013; died 2014.
Satisfaction with Not very satisfied treatment
Satisfaction with Dissatisfied care and support
Was a complaint No made Summary of Dorothy was initially treated for a suspected urinary infection, before interview being referred to Colchester Hospital. She attended for a biopsy. Then Robert received a call, saying the follow-up appointment was cancelled. They were unable to tell him why, so he gave them Dorothy’s work number. Dorothy was able to ascertain through information she was given on the phone whilst at work, that she had cancer. Robert received a call back, once they had Dorothy’s permission, and managed to find out the diagnosis over the phone.
Following a hysterectomy (at a different hospital), Dorothy had trouble with the wound healing and experienced difficulties getting treatment as the hospital did not seem interested in providing follow-on care. She was referred to Colchester for follow-up treatment and agreed to take part in a research trial for a combination of radiotherapy and chemotherapy. Following this treatment, the tests showed she was clear from cancer.
Dorothy developed a swelling in the groin, and swollen legs as a result of the treatment lowering her immune system. At this point, the radiotherapy treatment had finished and she was still having chemotherapy. The chemotherapy had an effect on her white blood cells, resulting in a blood transfusion, which caused sickness and lead to several visits to hospital as she was unable to keep food down. She was often discharged despite complaining of the same symptoms.
Scans were conducted and the chemotherapy treatment was put on hold due to Dorothy’s deteriorating condition. Dorothy then underwent surgery to remove a blockage, caused by scar tissue from the previous operation/strength of radiotherapy. She was then discharged the day
Page 137 of 230 93 before Christmas Eve, as she was told this was her ‘last chance’ of discharge before Christmas. Dorothy woke up in the early hours of Boxing Day with vomiting and stomach pain and was admitted to Critical Care. Dorothy received good care here. A cancer consultant admitted to Robert that the treatment Dorothy had received had been too strong.
Robert feels that he and Dorothy were not listened to at crucial times during her treatment.
Page 138 of 230 94 Interview Number: 86
Pseudonym: David (patient)
Description Male patient with urological cancer, aged 5165. Lives with wife and (carer/patient and grandson. type of cancer) Time period In treatment
Satisfaction with Dissatisfied treatment
Satisfaction with Not very satisfied care and support
Was a complaint No made Summary of David was diagnosed with prostate cancer after self-referring for a interview Prostate-Specific Antigen (PSA) test on the advice of a friend. He was subsequently diagnosed with early stage prostate cancer and the initial referral was speedy and treatment options were explained by specialist nurse. The consultant was abrupt but clear in the initial consultation.
Once his biopsy was confirmed, David had an appointment to discuss treatment options. In this consultation, the consultant adopted a very overbearing attitude, made decisions for David regarding treatment and basically did not allow him a role in any decision-making. David asked to speak to a radiologist. A consultation with his consultant and a radiologist was set up but this appeared to be ‘set up’ from the start, as the radiologist just supported the consultant’s recommendation.
David found out about a clinical trial of prostate cancer therapy at another hospital and enrolled on this, without his consultant’s support.
David’s father-in-law was also treated by the same consultant at Colchester, and the family feel they were misinformed, or not informed at all, about the father-in-law’s treatment or prognosis. The father-in- law was discharged following radical surgery and there was no attempt to follow up. No appointments were made despite requests for an appointment they were told the consultant did not require them. The family and the father-in-law were falsely reassured by this. David’s father-in-law was admitted a few months later with end stage cancer and died.
David and his wife feel that the care from this team was very poor, with the exception of the specialist nurse who seems to be the only person who provided information or offered David any care at all. They feel
Page 139 of 230 95 that the consultant in charge of David’s case, and his father-in-law’s, neither cared for them nor involved them in any decision-making, primarily because there was no attempt at communication with David or his father-in-law at any point in his treatment. David feels that the consultant’s behaviour was primarily motivated by his need to keep his figures up and not in any way by David’s best interests. As a result, David has lost confidence in Colchester General Hospital, and when asked whether he had confidence in the Hospital, he replied, ‘No, I’d hate to go in there in a bad way; I’d worry about trying to come out alive.’
Page 140 of 230 96 Interview Number: 100
Pseudonym: Jacob (carer), Beatrice (patient, deceased)
Description Male carer, whose mother Beatrice died from lung cancer. (Carer/patient and type of cancer) Time period Beatrice died in 2012, aged in her 70s.
Satisfaction with Dissatisfied treatment
Satisfaction with Dissatisfied care and support Was a complaint Contacted PALS but not resolved the issue. made Summary of Beatrice was treated for breast cancer in Colchester General Hospital. interview She had a mastectomy followed by chemotherapy. She then had a hip operation, was discharged and could walk but developed complications – a blood clot.
Beatrice went for an appointment at the Mary Barron Ward, where, because of concerns with her health, she was told they wanted to keep her in and would find her a bed. She waited all day for a bed but they could not find her one, so she was made to return home feeling unwell and exhausted. Following this incident, a week later Beatrice had a fall at home and went in pain to A&E and was kept in the A&E assessment department for a long time (2 days over the 2012 Christmas period). Whilst in A&E, Beatrice’s social worker had to take her to the toilet because there were no hospital staff available to do so and Beatrice’s card stating she was in the care of Mary Barron Ward was not taken into consideration. Jacob feels that Beatrice should have been taken there immediately.
Following the two days in acute care, Beatrice was moved to Clacton Hospital, which was on lock down because of the Norovirus. They also could not find her a bed, and despite the fact that she was terminally ill, discharged her to a care home where they did not know how to control her pain. Jacob is very disappointed and angry that a bed could not be found in a hospital or hospice.
Beatrice was eventually admitted to the Essex County Hospital where she was put on the Liverpool Care Pathway programme and died. Jacob was told that his mother would die in a couple of days but she survived a week. A very traumatic end; he feels neither the family nor his mother were well informed or supported during this period. Given lots of leaflets at Essex but there was little face-to-face explanation or Page 141 of 230 97 support available. The care provided by individual nurses was good, but there was system failure because of understaffing. Beatrice was ‘processed’ through the system and not treated as an individual.
Jacob contacted PALS to complain about his mother’s care. PALS repeatedly suggested that he access counselling, which he did not want. He feels there is no point in complaining as nothing will change.
Page 142 of 230 98 Interview Number: 108
Pseudonyms: Katherine (patient)
Description Female patient, gynaecological cancer, aged 6675. Lives with husband. (carer/patient and type of cancer) Time period Operation in May 2013 for gynaecological cancer.
Satisfaction with Extremely satisfied treatment
Satisfaction with Very satisfied care and support
Was a complaint No made Summary of In February 2013, Katherine went to her GP and was subsequently interview diagnosed with a prolapsed bladder at the hospital. She was waiting for an operation when she starts to have a bleed. Public holidays intervene (Easter), then she reports this and is rushed in for scans at Clacton, and is very quickly diagnosed with a gynaecological cancer (although not told what type).
A series of scans ensues; she is then operated on very quickly at another hospital. The tumour is removed. At this point, in hindsight, she realises how serious it was and this is emphasised by the speed of treatment. She then receives chemotherapy at Essex County Hospital and she is very happy with the way the Hospital dealt with her and their thoughtfulness.
Katherine comments that there was a lack of communication across hospitals. Notes seemed out-of-date; at the last check-up, the date was recorded wrongly in the notes and she received an appointment for a bladder repair, despite the fact that this was no longer needed. But apart from these things, she was actually pleased with her treatment; she was primarily impressed by the speed with which things were done. While this was disconcerting and a bit scary, she really feels she had great care, no holdups and generally the liaising between hospitals was very good.
Particularly impressed by nursing care lots of emotional support, and care across hospitals was very good.
Page 143 of 230 99 Interview Number: 109
Pseudonyms: Lydia (patient), Olivia (carer/mother), Thomas (carer/husband)
Description Female patient, aged 3650, being treated for breast cancer. Mother (carer/patient and and husband present at interview. Lives with husband and two young type of cancer) children. Time period Diagnosis in 2013, and undergoing chemotherapy at time of interview in April 2014.
Satisfaction with Not very satisfied treatment
Satisfaction with Not very satisfied care and support
Was a complaint Yes, mother-in-law rang made Summary of Lydia experienced a delay between diagnosis confirmation and interview treatment. This resulted in Lydia being left in limbo for a couple of months, during this time it was difficult to get anyone to give her a straight piece of information.
Lydia feels that communication was bad between medical teams – surgery and oncology, and often paperwork goes missing so no one knows what they should be doing next. Lydia described trying to actually get help or some information for herself about her treatment as difficult and time-consuming, as there is often no one to ask and all Helplines are staffed by answering machines, not people.
Oncology centre at Mary Barron Suite delivered brilliant care, as they were sensitive and listened. However, in general, Lydia has lost confidence and trust in the system, as it has let her down so much in the past. Appointments get delayed, scans are postponed, no one seems to have a clear picture of her treatment plan, so she is confused by what is going on. Paperwork often missing or incomplete.
Complete hiatus at the beginning of her treatment – so her mother-in- law rang a phone line to complain and this was fed back to the breast care nurse; Lydia wonders whether this may have soured their relationship.
Lydia and her family would like to complain now about the lack of care and confusion about her treatment and the fact that Lydia cannot get any information about her cancer (staging). However, they worry that if they make a complaint through PALS, Lydia’s care could suffer.
Page 144 of 230 101 Interview Number: 120
Pseudonyms: Michael (carer), Rachel (patient, deceased)
Description Male carer whose wife Rachel died from secondary lung cancer but (carer/patient and unknown primary. Lives alone. Retired. type of cancer) Time period Rachel died in 2012.
Satisfaction with Not very satisfied treatment
Satisfaction with Dissatisfied care and support
Was a complaint No made Summary of Rachel was diagnosed with secondary lung cancer and admitted to interview hospital. The description she was given was quite comprehensive, but there was a delay to the treatment start, then some hiatus because it was a public holiday. A few complications ensued as lungs filled up with fluid and needed draining, so she was in and out of hospital at the start of her treatment.
In general staff are good, but nurses not very quick to respond when patients are in pain or distressed, although a couple of outstanding exceptions. Doctors competent and clear regarding treatment. However, pain control was very difficult to get going as the procedures around the giving out of medication are complex. Her medication is locked up, and only certain people can administer them. Rachel and the healthcare professionals come to an agreement regarding keeping hold of a limited amount of medication so that Rachel can self-administer; but the pharmacist will not allow this to continue, so it becomes complex. Rachel is sent home for a couple of days and when she returns Michael holds onto pain medication, so he can give them to her in hospital if she has to wait for nurses during her stay.
Rachel’s care in Colchester General Hospital was sporadic. Never really has a clear treatment plan, which changed frequently with no explanation given, and Michael and Rachel were not involved in any treatment decisions. Believes that the problem with Colchester General Hospital is that procedures get in the way of patient care, focus is on the operation of the ward, not the patients. In contrast, Michael spoke of his deep appreciation of the staff on the cancer ward at the old Essex County hospital and the Mary Barron oncology suite. He said that his wife 'felt safe' when staying on the cancer ward there, and describes the staff there as possessing ‘a calling or vocation’.
Page 145 of 230 100
Rachel was admitted to a hospice where, against Michael’s will, she was told she was dying. She was then given an overdose of morphine on the last day and Michael was told about this. He was fine but they said they had to give her a post-mortem; this upset him as she was dying anyway and he wanted to bury her. He is aware of the overdose and was just happy that his wife’s last day was calm and pain free and upset that he had to wait to bury her.
Page 146 of 230 102 Interview Number: 126
Pseudonyms: Claire (carer), William (patient)
Description Female carer whose husband William was treated for lower GI cancer. (carer/patient and Age range 3650. Grown up children who have moved out of home and type of cancer) have their own children. Claire and William both work full time – Claire works in the caring profession.
Time period William was diagnosed in 2013.
Satisfaction with Not very satisfied treatment
Satisfaction with Dissatisfied care and support
Was a complaint Yes to people in charge of the ward; no formal complaints yet. made Summary of William experienced sudden weight loss and went to his GP and was interview referred for colonoscopy within 2 weeks, on William’s insistence. William received the diagnosis when he had the colonoscopy.
Following this, William missed an appointment as he never received prior notice of the appointment (the letter went astray, or the hospital failed to inform them of it). So they kept calling the hospital and finally, following much chasing, went and talked to the surgeon but William underwent no physical examination at this point.
William was taken into surgery and was ‘open and closed’ on the surgical table as the cancer was not in the position the surgical team were prepped for. No aftercare was provided for William at home, so Claire cared for him, dressing the wound, etc. A month later, the operation was rescheduled and William is given a colostomy. They were told this might not have been the outcome if the operation had happened earlier. The operation would have proceeded at the earlier time if they had actually examined him, as they then would have known where the tumour was located.
The colostomy has recently been reversed and William is now recovering well and having regular screening check-ups.
Claire is fully responsible for caring for William (including changing his dressings and looking after stoma) – no aftercare provided by the hospital, GP or MacMillan. She is willing and able to do this (because of her employment as a carer) but feels that he should have had care provided and that it should not just fall to her. Nurse specialist and
Page 147 of 230 103 surgeon at Colchester General Hospital were kind but do not provide much practical care. Overall, Claire feels very let down by the system. Good care in hospital once they were on the right track, i.e. supportive, but no care in the community.
The worst thing was having an unnecessary operation to start with and no follow-up care to deal with this.
Page 148 of 230 104 Interview Number: 135
Pseudonyms: Peter (patient), Alice (carer)
Description Male patient who was treated for urological (bladder) cancer. 75+ age (carer/patient and range. Lives with his wife, Alice. type of cancer) Time period May 2013present
Satisfaction with Extremely satisfied treatment
Satisfaction with Extremely satisfied care and support
Was a complaint No made Summary of In May 2013, Peter began passing blood and received some initial interview treatment from his GP (antibiotics). When this did not clear up he was referred to urology at CHUFT. He received an appointment within 4 days and was diagnosed with bladder cancer.
Peter’s initial consultation with the surgeon was not good – the surgeon was very abrupt, but the specialist nurse explained the situation. Peter decided to have surgery and attends a pre-op appointment, to be told the operation had been postponed. He had received no notification of this in advance of attending.
Peter and Alice decide to take a week’s holiday whilst waiting for the (rearranged) operation and Peter starts to bleed again so is admitted to the nearest hospital. Peter has a bad experience there, as the quality of care is poor. Peter is admitted to a ward and catheterised but his catheter keeps getting blocked, so they will not discharge him despite Alice asking for him to be transferred to Colchester.
Peter remains in hospital for 8 days while they try to flush out the blockages in the catheter. The discharge procedure was complex and Peter was not given any after care. The hospital contacts Colchester to bring them up to speed and Peter visits Colchester Urology. Three weeks later, Peter has the operation – and is in no pain at all.
Following the operation, Peter is discharged after 12 days, but within hours the bag leaks, so Peter returns to the ward where they attend to him, discharge him, and then he is in the care of district nurses that he cannot praise highly enough.
Page 149 of 230 105
Peter defends nursing staff at CHUFT against criticism and repeatedly states that people get the treatment they deserve, i.e. if you’re nice to people and have a laugh and a joke with them, they’ll look after you. Regarding the moving of the appointment, Peter is okay about this and just feels a bit cross that the rest of the family had to keep altering their lives and arrangements.
Page 150 of 230 106 6. Conclusions and Recommendations
6.1 Conclusion
This report presents a mixed picture of people’s lived experiences of cancer services in Colchester. By utilising a predominantly qualitative mixed-method approach, we have been able to garner the voices and lived experiences of more than 200 patients and carers.21 A major strength of the study is the extent to which this unashamedly patient-centred approach has facilitated a way of seeing the patient’s journey holistically. So, while the study does not purport to be based on representative sampling techniques, and indeed our interview sample was biased towards those who reported lower overall satisfaction levels, we have gained access to how care and treatment have impacted upon people’s emotions, everyday lives and ongoing attitude towards, and relationship with, healthcare providers.
Some of our findings, as they relate to experiences of poor care and treatment, are quite shocking. Although it is difficult to determine the prevalence of such incidences, they do underline the importance of hospitals maintaining systems to identify, from patient experiences, early signs of poor care. This was one of the key lessons to emerge from the Mid Staffordshire NHS Foundation Trust Public Inquiry (House of Commons Library 2013).
Across the study, a number of problems experienced by patients and carers were consistently reported. Many of these relate to basic, fundamental aspects of care. For example, people often reported that they were not given assistance when they required help to wash themselves or with feeding. Many patients reported how they would hold off ringing bedside buzzers for assistance until they considered it to be urgent, only to have to wait 20 minutes or so before anyone would respond. Patients and carers found that these experiences increased their feelings of vulnerability, and a number reported feeling unsafe in hospital as a result.
However, there were areas of care that were consistently highly praised. With little exception, cancer nurse specialists were highly acclaimed by patients and carers for their accessibility and attentiveness to patients’ needs and concerns. They were seen by most of our respondents to be a key point of contact throughout. High praise for treatment, care and support at Essex County Hospital and, in particular, for the Mary Barron suite was also received. Respondents reported how patient-centred they found the care and treatment there, how staff knew and recognised them, and how it felt like a compassionate place.
21 A recent study report that focuses on the maintenance of high standards of quality in cancer services (Brown et al 2014) points to the importance of patient and public engagement in enabling the continued improvement of services, and warns that services do not respond as well as they could do to patient needs when patient experience is overlooked.
Page 151 of 230 107 Another constructive finding to emerge from the study was the positive impact that cancer support group membership had on care and treatment. Patients and carers belonging to groups felt they were listened to and involved in decision making. In general, they rated highly their care and treatment at CHUFT and they really valued the close relationship the groups had with the cancer nurse specialist and other healthcare staff. The groups provided advice and information to new and existing members, and patients and carers were equally supportive of each other. In short, they felt supported.
For many of our respondents, the journey from referral by their GP, and diagnosis, through to initial and ongoing treatment and care, including, in some unfortunate cases, end-of-life care, was experienced as an emotional rollercoaster. Some described feeling vulnerable, experiencing a cancer diagnosis as a life-changing event. Many of our respondents, including seven of our 16 interviewees, were recently bereaved carers, and they understandably reported feelings of vulnerability and suffering due to the painful loss of a loved one. A few respondents reported that patients had poor access to pain relief at Colchester General Hospital. This was a particular problem for end-of-life patients, and for their carers, who had to witness their dying loved ones suffer pain. In general, a number of problems relating to palliative care in Colchester were highlighted.
We found that the measurement of satisfaction as captured in the participant questionnaires is a ‘blunt instrument’, as, when subsequently interviewed, many of those who gave high scores also reported instances where they experienced poor quality care and treatment, and vice versa. Another factor affecting overall satisfaction scores was the patient’s eventual health outcome. Our data suggests that where patients received some poor aspects of care and treatment but then went on to experience a good health outcome, their overall score was not low. Conversely, when problems or poor care were experienced and the health outcomes for patients were not good, then this was more likely to result in a low overall score. We think this finding has implications for capturing an authentic picture of patient experience in general, and that more sophisticated methods than those currently conventionally used to capture patients’ experiences are required.
A further important mediating factor in relation to people’s satisfaction with treatment and care was when patients and their carers felt their concerns were not being listened to. This was especially the case where patients were in pain or had symptoms that they or their carers felt were not being attended to. It was also considered important that patients, and their carers, should be informed about the patient’s condition and ongoing treatment in a sensitive, empathetic and caring manner. Overall, there were numerous accounts of poor communication between patients, carers and healthcare staff, as well as between various healthcare staff and between different healthcare providers.
One of the shortcomings of this report is that we have little in the way of comparisons, insofar as we were unable to uncover any similar studies of patient and carer experience at other UK hospitals, and so we do not know whether the issues we have identified would be Page 152 of 230 108 found elsewhere if similar studies were carried out in other Trusts. Nor do we know the extent of these issues at Colchester. What we do know is that some of the issues we have identified, such as appointment delays, substandard administration and poor communication, echo the findings of the initial CQC inquiry, and have been recognised by the Trust and acted upon in their recovery action plan. 6.2 Recommendations
The need to improve communication is a key finding. Studies show that effective communication between healthcare professionals and their patients not only improves the patient experience, in terms of improved patient understanding and trust, it is also linked to better clinical outcomes for patients (Arora 2003; Epstein & Street 2007). Street et al (2009) suggest that improved communication can lead to better health including:
…increased access to care, greater patient knowledge and shared understanding, higher quality medical decisions, enhanced therapeutic alliances, increased social support, patient agency and empowerment, and better management of emotions.
We recommend that more effective ways of ensuring that patients’ and carers’ views and experiences are listened to and adopted. Some problems identified seem to be culturally embedded, and many of our respondents reported feeling that protocol, process and paperwork appear to take precedence over basic patient care. Furthermore, as many of the failings demonstrated, shared decision-making and listening to patients are basic tenants of good ethical medical and healthcare practice. We suggest, therefore, that the Trust and other providers of healthcare in Essex encourage staff to participate in ethics training and education. We suggest that a ‘virtue ethics’22 approach, in particular, provide a basis for the improvement of professional, values-based practice.
Finally, while many of the other issues identified in this report are already being, or have been, addressed such as improvements to administrative processes, including record keeping and appointment scheduling we suggest that the issue of pain relief, particularly at CHUFT, and the care of patients with co-morbidities be investigated to see if improvements can be made.
Such complex problems can only be addressed by a variety of means:
1. Communication must be made more effective at all levels and by all healthcare professionals.
22 Virtue ethics, based on Aristotelean philosophy on what constitutes the good or virtuous life, has become influential in modern medical ethics where it emphasises techniques that promote a person’s character and instructs their conscience, resulting ultimately in morally good acts. (Gardiner 2003; Hoyt-O’Connor 2004)
Page 153 of 230 109 2. Qualitative methods in research, and ongoing evaluation, should be adopted so as to better understand patients’ and carers’ experiences and to support providers’ continuing quality improvement programmes. 3. Support for, and engagement with existing cancer support groups, should be maintained, and the formation of new groups for cancer types not already represented should be encouraged and facilitated. 4. Formal education and training opportunities in ethics, for staff at the Trust and elsewhere in the Colchester area, should be provided.
Next Steps
The publication of this Report does not complete our task at Healthwatch Essex. We are considering carrying out further qualitative research in the next 12 months to gain insight into the lived experience of doctors, nurses and other healthcare professionals involved in the delivery of cancer care in Colchester. We believe that all parties’ experiences and views need to be heard if persistent problems are to be fully understood and addressed.
In the meantime, we look forward to receiving responses to our study from patients, carers, healthcare providers, and other key stakeholders, as we engage with them to further develop our ongoing role as a patient voice, and seek to understand how the lived experience of patients and carers can be used systematically to drive continuous improvement in the NHS and social care. As Harry, husband of Pearl, told us when he telephoned recently to request an update on the project:
I don’t want anything out of this. I just want things to improve for others. (Harry, husband of Pearl, deceased pancreatic cancer patient)
Page 154 of 230 111 References
Arora, N. K. (2003). ‘Interacting with cancer patients: the significance of physicians’ communication behaviour’, Social Science and Medicine 57: 791–806.
Brown, Ellins & Kearney et al (2014). Measuring up? The health of NHS cancer services, A report for Cancer Research UK. Health Services Management Centre, University of Birmingham. [Online]. Available at: http://www.cancerresearchuk.org/sites/default/files/measuring_up_health_of_nhs_cancer _services_sept2014.pdf
Care Quality Commission (2013). Inspection Report: Colchester General Hospital.
Colchester Hospital University Foundation Trust (2014). Annual Report, Annual Accounts & Quality Report, 1 April 2013 – 31 March 2014. [Online]. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/338074/C OLCHESTER_Annual_Report_and_Accounts_2013-14_1_.pdf
Department of Health (2008). High quality care for all: NHS Next Stage Review final report. London: Department of Health.
Epstein, R. M. & R. L. Street (2007). Patient-centered communication in cancer care: promoting healing and reducing suffering. Bethesda, MD: National Cancer Institute [NIH Publication No. 07-6225].
Gardiner, P. (2003). ‘A virtue approach to moral dilemmas in medicine’, Journal of Medical Ethics 29: 297-302.
GMC (2008). Guidance for Doctors, Consent: patients and doctors making decisions together. [Online]. Available at: http://www.gmc-uk.org/static/documents/content/Consent_- _English_0911.pdf
Guest, G., K. M. MacQueen & E. E. Namey (2012). Applied Thematic Analysis. London: Sage Publications.
Hoyt-O’Connor, Paul E. (2004). ‘Virtue and the Practice of Medicine’, International Philosophical Quarterly 44 (1) 7994.
House of Commons Library (2013). The Francis Report (Report of the Mid-Staffordshire NHS Foundation Trust public enquiry) and the Government’s response. Standard Note: SN/SP/6690.
Kitzinger, J. (1995). ‘Qualitative research: introducing focus groups’, BMJ 311: 299.
Lofland, J. & Lofland, L. H. (1995) Analysing Social Settings, 3rd edition, Belmount, CA: Wadsworth. Page 155 of 230 110 Mellor, J. & E. Barradell (2008). ‘Cancer care: improving the patient experience’, Primary Health Care 18: (4) 1416.
Patton, M. Q. (1990). Qualitative evaluation and research methods (2nd ed.). Newbury Park, CA: Sage Publications.
Quality Health (2014). National Cancer Patient Experience Survey 2014, Colchester Hospital University NHS Foundation Trust. [Online]. Available at: http://www.quality- health.co.uk/resources/surveys/national-cancer-experience-survey
Steward, D. W. & P. N. Shamdasini (2014). Focus Groups: Theory and Practice, (3rd ed.) Los Angeles: Sage Publishing.
Street, R. L. Jr., Makoul, G., Arora N. K., & Epstein R. M. (2009). ‘How does communication heal? Pathways linking clinician-patient communication to health outcomes’, Patient Education and Counselling, 74: 295-301.
Ussher, J., L. Kirstena, P. Butow & M. Sandoval (2005). ‘What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer’, Social Science & Medicine 62: 2565–2576.
Page 156 of 230 112 Appendices Appendix i - Questionnaire
Page 157 of 230 113
Page 158 of 230 114
Page 159 of 230 115
Page 160 of 230 116 Appendix ii - Survey Promotional Methods
The main channels we used were online, social media, flyers, local press, radio, newsletters, events/meetings and email.
1. Online The survey was advertised on our website and got 222 unique page views over the time it was open (26th March – 30th April). It was the second most popular page over this time (after About Us) and people spent an average of 3 minutes on the page (compared to 1.36 for the site in general). 177 people entered the Healthwatch Essex site through this page over that time. Our partners also advertised the survey, including St Helena Hospice, West Essex CCG, North Essex CCG, Colchester Hospital, and Macmillan Cancer Support.
2. Social media We posted several times a week about our survey on Twitter. Our tweets had many retweets, increasing our exposure. Retweeters included: ecdp (3,480 followers) Mid Essex CCG (2,400), Castlepoint & Rochford CCG (1,300) Living Beyond Diagnosis (1,100) Macmillan South East (1000) Colchester Women’s Institute Girls (1,000) North East CCG (870) East of England Citizens Senate (460) and individuals, including Lloyd Armstrong who has 20k followers, etc. Our main Facebook post on 27th March reached 189 people, and was shared by other people, including Macmillan Cancer Support
3. Flyers We had 2000 flyers printed for distribution. They were sent to: GPs in Colchester and Tendring area (via CCG) 70 local pharmacies Strategic Body and Healthwatch Essex Ambassadors based in NE Essex, for distribution to local groups/individuals Colchester General Hospital – one of the sisters who works on the two cancer wards laminated some flyers and had them on display in the cancer wards Essex County Hospital – for their Macmillan Cancer Support Info Centre Broomfield Hospital – for their Cancer Info Pod in reception area Tendring CVS (100 copies)
Page 161 of 230 117
4. Local press We sent out two press releases, both had a great response from local media: Launch on 26th March Survey extension on 16th April In the first wave, the story was picked up by the newspapers below, and several people phoned up for paper copies of the survey as a result of seeing the story in these papers (numbers in brackets): Clacton & Frinton Gazette (1) (Readership: 39,000) Halstead Gazette (2) (Readership: 13,000) Colchester Gazette (2) (Readership: 42,000) Essex County Standard (2) (Readership: 44,000) East Anglian Daily Times (1) (Readership: 90,000) In the second wave, the story was picked up by: East Anglian Daily Times (front page!) – 17th April Colchester Gazette Essex County Standard
We also took out some small paid adverts in two local magazines – The Connection and Look Magazine. The Connection has a circulation of 11,000 and covers Colchester, Sudbury, Braintree and Halstead. Look Magazine reaches 100,000 households in Tiptree, Kelvedon, Coggeshall and The Teys. Because of the timeframe, we were only able to advertise online with The Connection, but we advertised both online and in hard copy for Look Magazine.
5. Radio We had a 20 minute slot on the Dave Monk show on BBC Radio Essex (Tom Nutt) on 28th March. BBC Radio Essex has a listenership of 262,000 people a day. We did a pre-recorded interview for Essex Heart radio (Josephine Querido), 24th April. Essex Heart has a listenership of 455,000 people a day.
6. Newsletters Healthwatch Essex newsletters: eNews (10th April) and Bitesize (26th March, 23rd April) CVS e-newsletters Broomfield e-newsletter to all staff, “Staff Focus”, 23rd April Macmillan Cancer Support
7. Events/Meetings CHAPS – men’s health event at Colchester Community Football Stadium, 27th March; around 300 men attended
Page 162 of 230 118 Who Will Care event – 4th April (voluntary sector event held at Colchester Community Football Stadium) Workshop at Essex University: ‘Listening to the voice of the people who use health services’, 10th April (community & health event) Colchester General Hospital Cancer Information Day, 26th April – 70 hard copy surveys and flyers sent Colchester Pensioners Action Group – 30 hard copy surveys and flyers sent to their meeting on 25th April
8. Email We distributed information about our survey via email to our Voice Network and our contacts, which included Colchester and Tendring CVS, CCGs, hospitals, Macmillan Cancer Support, and Mid-Essex Cancer User Group, who cascaded it to their members/staff.
Page 163 of 230 119 Appendix iii – Interview Topic Guide
Patient & Carer Experience of Cancer Services in CHUFT Interview Topic Guide
Purpose of research:
To explore people’s lived experience of cancer services at CHUFT during the period 20102013.
Research objectives:
To explore and understand people’s experiences of quality of care with a focus on:
The extent to which service users felt informed about treatment and care options. The extent to which service users felt any concerns were listened to and acted upon. Perceptions of receptiveness of CHUFT to patient feedback. Ways to improve future cancer care at CHUFT.
This topic guide is for use with patients and carers with experiences of cancer services at CHUFT during a fieldwork period May – June 2014. Its function is to act as a map of areas to be covered. Throughout the focus group, in addition to the prompts included in this guide, additional generic prompts will also be used, such as: can you tell me a bit more about that, why do you think you felt that way, etc.
1. Welcome & Introduction Section Aim: To cover administrative issues before the interview begins and to provide participants with the opportunity to ask questions. Recording to begin at the end of the section.
Before start, check consent form signed. Welcome from moderator /facilitator to conduct these focus groups. Introduce Healthwatch Essex and explain research. Healthwatch Essex is funding the research. They are a new independent organisation gathering and representing local people’s views on health and social care services so that
Page 164 of 230 121 they can be better designed to meet the needs of the local population. They have been invited to explore people’s experiences of cancer services during the past 3 years to find out about the quality of care and inform ways to improve future care at Colchester Hospital.
Explain nature and format of interviews – to provide a space to share experiences and views to help us understand what people’s experiences look like. I’ll probably ask some obvious sounding questions – not because you’re being unclear – but I don’t want to assume things.
During interview I will ask about:
• Views of quality of care.
• How listened to and informed about treatment and care options they felt.
• Perceptions of receptiveness of CHUFT to feedback.
• Suggestions to improve future cancer care at CHUFT.
Remind interview should last about an hour to an hour and a half. Remind discussion will be audio recorded to make sure we get an accurate record of what is said. Recording will be transcribed and analysed for the report. Everything you say will remain anonymous – all names will be removed and no comments will be attributable to any identifiable individual.
Any questions before start? Explain that we’d like to hear about their own personal experiences but are happy for participants to talk more generally if they wish.
RECORDER ON
2. Background Section Aim: To provide participants with the opportunity to introduce themselves and give an overview of their experience.
Ask participant to introduce themselves, including:
Their name, where they live, whether they live alone or with others, whether currently working/not working What type of cancer they were/are being treated for at Colchester Hospital
3. Experience of diagnosis and treatment Section Aim: To explore participant’s experiences of receiving diagnosis and treatment.
Diagnosis o Satisfied with timeframe between seeing GP and first appointment with hospital doctor. o Satisfaction with timeframe in which received diagnosis. . How communicated Page 165 of 230 120 . Cause of delays . Quality of reassurance o Manner in which diagnosis given . Sensitivity with which delivered . Opportunity to discuss diagnosis o Information about diagnosis . Quality and quantity of information given Format of information Volume of information Ease of understanding of information Timing of information e.g. was it the ‘right time’ to receive information Treatment o Involvement in treatment package decisions: . Explanation of treatment options . Quality of information given . Opportunities to discuss treatment options . Patient views taken into account & involved in decisions about care and treatment o Treatment timeframes: . If delays How communicated? Cause of any delays Quality of reassurance
4. Communication - Being listened to, giving feedback and impact Section Aim: To gather perceptions about the quality of communication between participants and cancer care providers, in particular focusing on being listened to, giving feedback about services, and perception of whether feedback was taken on board.
Being listened to How listened to did you feel? Whether feedback was actively sought, e.g. specific patient and public involvement opportunities, service user groups Were concerns listened to? Were concerns/feedback acted upon i. Did you feel comfortable and confident raising concerns? ii. How was this done? iii. Satisfaction with actions taken Key contact Did you know where to take questions and/or problems? Did you know who to contact out of hours to access care and support?
5. Overall perceptions of quality of care
Page 166 of 230 122 Section Aim: To obtain a picture of how well supported and cared for participants felt whilst receiving care from CHUFT.
Support Did you feel well supported? Treated with care and compassion Were you treated with dignity and respect? Did you feel treated as an individual and your own particular needs acknowledged?
6. Final thoughts and suggestions for improvements
Section Aim: To conclude the group and provide space for participants to reflect on their experiences and views shared at the group in providing suggestions about improvements that could be made.
Overall, considering all the things we’ve discussed today, what are the key aspects for ensuring that people affected by cancer receive good quality care?
Information Compassionate care Being listened to Being involved in decisions Supported through treatment
Is there anything that CHUFT could do differently to ensure that patients receive such care?
RECORDER OFF
End of interview
Section Aim: To provide the chance for participants to ask further questions. To thank the participants for their time. To take place when recorder off.
Further questions about the research Thanks for time; what will happen next; contact details if further questions
Page 167 of 230 123 Appendix iv – Ethics Approval Letter
Page 168 of 230 124 Appendix v – Research Team
Dr. Oonagh Corrigan, Healthwatch Essex Oonagh Corrigan is a sociologist with twenty years’ experience of conducting qualitative research, specialising in ethnographic methods. She has previously held senior academic posts in medical sociology and ethics at the University of Cambridge, and at the medical schools of Plymouth University and the University of Exeter. She currently holds honorary fellowships at the School of Health and Human Sciences, University of Essex and at Plymouth University Peninsula School of Medicine. Oonagh has published widely on social and ethical aspects of health and health policy including topics such as patients’ informed consent to treatment and research, genetic medicine, clinical drug trials, and the training and experiences of newly qualified doctors. She has previously been a Wellcome Trust, and Leverhulme, prize recipient and since 2010 has been a member of the editorial board for the journal Sociology of Health and Illness.
Dr. Tom Nutt Tom Nutt is Chief Executive Officer of Healthwatch Essex, a position he took up in October 2012. Prior to this, Tom held a number of policy-related roles at Essex County Council, including Head of Voluntary Sector Relations and Policy and Strategy Manager (Adults). In his previous academic career, Tom was an historian based at Magdalene College, Cambridge, and the Cambridge Group for the History of Population and Social Structure, where he lectured and researched on aspects of British socio-economic and demographic history, including the history of the family and the history of social welfare. This included publishing in a number of journals, as well as editing two books – Illegitimacy in Britain, 17001920 and Narratives of the Poor in Eighteenth-Century Britain. He also sat on the editorial boards of Local Population Studies and History and Policy.
Nicky McGuinness, freelance researcher Nicky McGuinness is an independent qualitative social researcher with specialist expertise in fieldwork practice. Nicky graduated with a MSc Social Research with Distinction from Edinburgh University in 2006 and has worked for the Scottish Government, the Scottish Centre for Social Research and the National Centre for Social Research. For the previous three years Nicky has been self-employed and has specialised in the area of health research; recent projects include looking at the ease with which the general public accesses health and social care information (Healthwatch Essex), and work on maternity services and dignity in childbirth (Birthrights). Earlier in her career, Nicky worked on a diverse range of projects on social inclusion issues with members of the general public and vulnerable groups including prisoners, ex-offenders, young people and people with disabilities.
Page 169 of 230 125 Dr. Nina Hallowell, freelance researcher Nina Hallowell works as an applied medical sociologist. She has worked at the Universities of Cambridge, Edinburgh and Newcastle, and the Institute of Cancer Research. She currently holds honorary positions at the Universities of Cambridge and Melbourne. Her main areas of interest are patients' and healthcare workers' experiences of treatment and research, and the social and ethical implications of the implementation of new technologies in biomedicine. She has a particular interest in oncology and has published widely on cancer patients’ and their families’ experiences of their care and managing their genetic risks.
Duncan Wood, volunteer, research ambassador, Healthwatch Essex Duncan Wood is a graduate of Cambridge and the Open Universities, with a first class degree in psychology and a Master’s degree in psychological research methods. Professionally, he is a Member of the British Psychological Society and of the Market Research Society. He is especially interested in statistical and mathematical modelling. He has worked in the voluntary sector, in central government and local government in a mix of policy and research posts, and has published papers in local government journals. He recently took early retirement as head of research from Essex County Council to set up his own research business.
Sarah Haines, Information and Policy Officer, Healthwatch Essex Sarah is a psychology graduate from Plymouth University, who has also completed training in research governance and systematic reviews. She is a graduate member of the British Psychological Society. She has previously undertaken research at Peninsula Medical School. She has been involved in three projects, including the development of novel methods for Alzheimer's assessment, and assisted in systematic reviews on clinical trial methods in Multiple Sclerosis and Parkinson’s disease.
Page 170 of 230 126 Appendix vi – Interview Analysis Methodology
Initial themes were identified by OC and NM and the transcripts were coded accordingly by researchers OC, NM, SH & NH:
Communication a. Immediate – diagnosis & treatment plan b. Ongoing – patient progress & further treatment c. Ease of access to information / questions being addressed d. Breaking bad news Listened to/noticed a. Experiences of being seen and heard Experiences of care or lack of care a. Nursing care b. Consultants and other hospital doctors c. GPs Administration a. Appointments b. Parking c. Missing notes d. Poor communication (letters, etc.) between doctors and GPs or others involved in care Clinical complications, errors, side effects.
Patient’s attitudes/prior experie nces a. Staying positive b. Suspicious Responses to complaints a. Hospitals b. Nurses, doctors c. Others End-of-life care The role/importance of carers in supporting patients. The role of support groups
The coded sections of each interview transcript were then copied and placed under the appropriate theme heading. In some instances, extracts were coded for multiple themes. Interview narratives were then individually summarised and triangulated with individual survey data.
Further contextual data was added to the summary from observational notes made by the interviewer (NM) immediately after the interview. These notes comprised of
Page 171 of 230 127 descriptions of the person’s home/surroundings, or anything that was observed as noteworthy during the interview. The case studies provide a brief overview of each participant’s case. Individuals were assigned pseudonyms at this stage.
Page 172 of 230 128 Appendix vii – Quantitative Analysis and Technical Report for Survey
The survey 172 people completed the questionnaire, but not all questions were answered. The small sub-samples mean that very detailed analysis will not be reliable. Nevertheless, this report gives further lines of enquiry.
Satisfaction More people were satisfied than not: 74.3% with treatment; and 67.6% with care. Some 77.2% of people felt listened to, though this is likely to be an overestimate. But of those who fed back an issue, only 49.3% said it had been dealt with appropriately.
Patients and carers Patients were more positive than the people who attended treatment with them ('carers'). This is a reliable result. For example, 83.8% of patients were satisfied with treatment, but only 51.2% of carers; 90.1% of patients felt listened to, but only 46.7% of carers. 'Carers' whose adult son or daughter was being treated were always least likely to be positive, but this is based on a very small sub-sample and may not be reliable.
Type of cancer Due to error margins on the data (at best, +/- 12% points), there's no strong evidence that quality of treatment or care varies by type of cancer. Looking at only the largest sub-samples, people dealing with breast cancer give the highest overall scores for satisfaction with treatment and care, feeling listened to, and feeling that feed back was dealt with appropriately. But not all people in this group are positive. Again, looking at only the largest sub-samples, people dealing with lower gastro-intestinal tract cancer give scores for satisfaction with treatment and care, for being listened to and for any feedback being appropriately dealt with, that on average are roughly 18% points lower than those given for breast cancer. This apparent difference is worth investigating further.
Gender, age, ethnicity and postcode There are no strong differences in satisfaction by gender or age, but the 75+ age group tend to give the most positive scores. This is very common in survey results, and probably reflects the general attitude among that group rather than anything specific to Colchester Hospital. There is some evidence of a dip in satisfaction scores and feeling listened to among the 6675 year old group. This is worth investigating further. All respondents were white. Respondents came from CO, CB and CM postcode areas. Many gave their postcode district (e.g. CO15 2) but this is at too high a level for useful socio- economic analysis.
Page 173 of 230 129 Correlation among scores Correlations measure relationships between answer-scores to different questions. A correlation of 1 means that both scores will always go up or down together. A score of 0 means there is no relationship between the scores at all. There is a strong positive correlation between attitudes to treatment and to care (0.869). The strongest relationship for 'feeling listened to' is with satisfaction with care (0.700) The strongest relationship for 'dealt with appropriately' is with 'feeling listened to' (0.684)
Most satisfied v. least satisfied Some 19 people gave the highest possible scores for satisfaction with treatment and care, being listened to, and having feedback dealt with appropriately. Of these, 15 were patients and 4 were carers. People in this group were still able to suggest improvements. Some 8 people gave the lowest possible scores for the same questions. Of these, 4 were patients and 4 were carers.
1. Introduction
1.1 This is a report on the survey of users of cancer services at Colchester Hospital, carried out by Healthwatch Essex in the spring of 2014.
1.2 The survey provides useful insights into people's opinions and experiences, which has been triangulated with information from focus groups and interviews. The survey has itself been a source of qualitative comment from respondents. This report, however, deals only with the numerical counts of answers to fixed questions.
1.2 Despite best efforts, the survey produced only 172 returns. However, not all of the questions were completed by all respondents, so the effective sample for some of the questions is quite small. Also, sampling was necessarily haphazard rather than structured. The effect of this is to make it difficult to:
establish real differences, using statistical tests, between sub-groups in the sample; and generalise from the sample to the whole population of cancer service users at Colchester.
1.3 It is nevertheless productive to analyse how four sets of attitudes vary by the characteristics of the people who responded to the survey. The four key attitude sets picked out for quantitative analysis are:
Satisfaction with treatment Satisfaction with care Feeling listened to Feeling that any issues raised were dealt with appropriately
1.4 In the interests of simplicity, the full range of satisfaction scores (five categories), have, for the most part, been transformed into just two scores, satisfied or dissatisfied, in this analysis.
2. Satisfaction with Treatment
2.1 Overall, 25.7% were dissatisfied with their treatment, while 74.3% were satisfied, as Figure 1 illustrates. Please see the Technical Appendix for an account of how the five-point scale in the questionnaire has been transformed into a two-point scale. The percentages shown here are based on 148 responses. (Hereafter, base number will shown in this format: n = 148.)
Page 174 of 230 131
Whether satisfied with treatment (all respondents)
25.70%, 26% Satisfied Dissatisfied
74.30%, 74%
Figure 1: Whether satisfied with treatment, all respondents (n = 148)
2.2 However, there is a difference between those who responded as patients, and those who were carers:
83.8% of patients were satisfied (n = 105); but only 51.2% of carers were satisfied (n = 43).
Figure 2 illustrates this. This difference is statistically significant, i.e. it is likely to be a genuine difference, rather than being due to random variation in the answers. (Anything less than 5% likely to be random is treated as significant in this report, provided other statistical requirements are met.)
Patient - satisfied, 83.80% Percentage satisfied with treatment Patients v Carers
Carer - Carer- satisfied, dissatisfied, 51.20% 48.80%
Patient - dissatisfied, 16.20%
Figure 2: Whether satisfied with treatment, patients (n = 105) and carers (n = 43)
2.3 Carers' satisfaction with treatment appears to vary according to the relationship of the carer to the patient, as Table 1 shows. However, given the small numbers in some of the categories, it Page 175 of 230 130 would be prudent to treat these results with some caution. It is nevertheless fairly typical throughout the survey that carers who were parents of patients tended to give more negative responses.
Table 1: Satisfaction of carers with treatment, by relationship to patient
Relationship to patient % of carers satisfied Base number My parent 40% n = 15 My son or daughter 0% n = 5 My relative 75% n = 4 My partner or spouse 62.5% n = 16 My friend 100% n = 3
2.4 There is also some apparent variation in satisfaction with treatment by type of cancer. Again, however, the small sample size makes some of these statistics unreliable as a guide to the experience of the population of cancer patients and their carers at Colchester Hospital.
Table 2: Satisfaction of all respondents with treatment, by type of cancer
Type of cancer % satisfied Base number Brain / central nervous system 0% n = 2 Breast 83.3% n = 36 Colorectal / LGI / bowel 65.4% n = 26 Gynaecological 75% n = 12 Haematology and lymphoma 88.9% n = 9 Head and neck 100% n = 6 Lung 72.7% n = 11 Urology, prostate, etc. 75% n = 36 Skin 100% n = 6 Upper GI 87.5% n = 1 Sarcoma 50% n = 2 Other 40% n = 10
2.5 Satisfaction or dissatisfaction with treatment made no difference to whether people were willing to take part in interviews about their experience. In both cases, 69.7% (n = 109 satisfied, n = 33 dissatisfied) were willing to be interviewed.
2.6 Did satisfaction with treatment differ by gender? Some 76.4% of female respondents (n = 89) said they were satisfied, with 80.9% of males saying the same (n = 47). This is not, however, a statistically significant result.
2.7 There is no clear evidence that satisfaction with treatment varies systematically by age, as Table 3 and Figure 3 show.
Page 176 of 230 132 Table 3: Satisfaction with treatment, by age group
Age range % Satisfied Base number 1625 100% n = 1 2635 66.7% n = 3 3650 85.7% n = 14 5165 78.7% n = 61 6675 64.7% n = 34 75+ 87.5% n = 24
Satisfaction with treatment
% Satisfied, 16-25, by age group
100.0
% Satisfied, 36-50, % Satisfied, 75+, 87.5 85.7 % Satisfied, 51-65, 78.7 % Satisfied, 26-35, 66.7 % Satisfied 51-65, 61 % Satisfied, 66-75, Base number 64.7
66-75, 34
75+, 24
36-50, 14 26-35, 3
16-25, 1
Age group
Figure 3: Satisfaction with treatment, by age group (showing base number per group)
2.8 Analysis by postcode is not useful. The results are not statistically significant, and the postcode districts (e.g. CO1 or CO15, the only geographical level for which the data is almost consistently reliable) are at too large a level to tell us about the socio-demographic characteristics of respondents.
2.9 All people who responded to the question about ethnicity were white, so no analysis is possible by ethnic group.
3. Satisfaction with care
3.1 The first thing to note is that there is a strong correlation between satisfaction with care and satisfaction with treatment.
3.2 This correlation is 0.869, meaning that the two types of satisfaction go up and down together quite closely. (A score of 1 would mean that the two types are perfectly correlated, 0 would mean that there is no relationship between them at all, and -1 would mean that when one goes up,
Page 177 of 230 133 the other always goes down.) In this case, the correlation is also statistically significant, i.e. there is a less than 5% probability that the result is just random. (The correlation measure used here is Spearman's rho, for ordinal data; n = 148.)
3.3 Overall, 67.6% of respondents were satisfied with care; 32.4% were not, as Figure 4 shows. Here, n = 148.
Satisfaction with care (all respondents)
Satisfied 32.40%, 32% Dissatisfied
67.60%, 68%
Figure 4: Satisfaction with care, all respondents (n = 148)
3.4 Again, levels of satisfaction with care received differ significantly by whether the respondent is a patient or a carer. 78.1% of patients (n = 105) said they were satisfied, but only 41.9% of carers (n = 43). This difference is statistically significant. Figure 5 illustrates this.
Patient - Percentage satisfied with care satisfied, Patients v Carers 78.10% Carer - dissatisfied, 58.10%
Carer - satisfied, 41.90% Patient - dissatisfied, 21.90%
Figure 5: Percentage satisfied with care patients (n = 105) versus carers (n = 43)
Page 178 of 230 134 3.5 For those who were carers, satisfaction with care showed no systematic relationship with the type of person cared for.
Table 4: Satisfaction of carers with care given by hospital, by relationship to patient
Relationship to patient % of carers satisfied Base number My parent 40% n = 15 My son or daughter 20% n = 5 My relative 25% n = 4 My partner or spouse 43.8% n = 16 My friend 100% n = 3
This is a somewhat different profile to the percentage of carers satisfied with treatment, but, again, those with an adult son or daughter undergoing treatment give the lowest score.
3.6 Table 5 shows the percentage of respondents satisfied with care. The differences are not statistically significant, given the small numbers for some types of cancer; but on the whole, satisfaction levels for care are lower than they are for treatment (compare with Table 2).
Table 5: Satisfaction of all respondents with care, by type of cancer
Type of cancer % satisfied Base number Brain / central nervous system 0% n = 2 Breast 80.6% n = 36 Colorectal / LGI / bowel 69.2% n = 26 Gynaecological 66.7% n = 12 Haematology and lymphoma 77.8% n = 9 Head and neck 66.7% n = 6 Lung 63.6% n = 11 Urology, prostate, etc. 66.7% n = 36 Skin 83.3% n = 6 Upper GI 75% n = 8 Sarcoma 50% n = 2 Other 40% n = 10
3.7 Again, satisfaction or dissatisfaction did not make any difference to willingness to take part in interviews: 69.8% of the dissatisfied were willing, and 69.7% of the satisfied.
3.8 As regards gender, 69.7% of females were satisfied with care, and 74.5% of males (n = 89 and 47, respectively). This is not statistically significant.
3.9 There appears to be no systematic relationship of satisfaction with treatment by age, though, again, there is an apparent dip for the 6675 age group; see Table 6 and Figure 6.
Table 6: Satisfaction with care, by age group
Age range % Satisfied Base number 1625 100% n = 1 2635 100% n = 3 3650 78.6% n = 14 5165 67.2% n = 61 Page 179 of 230 135
6675 61.8% n = 34 75+ 83.3% n = 24
% Satisfied, 16-25, Satisfaction with care, by age group 100.00 % Satisfied, 26-35, 100.00 % Satisfied, 75+, % Satisfied, 36-50, 83.30 78.60 % Satisfied, 51-65, 67.20 % Satisfied, 66-75, % Satisfied 61.80 51-65, 61 Base number
66-75, 34 75+, 24 36-50, 14
16-25, 1 26-35, 3 Age group
Figure 6: Satisfaction with care, by age group
3.10 Again, analysis by postcode is not useful, and by ethnicity is not possible.
4. Did you feel that your views or experiences were listened to?
4.1 Overall, 77.2% of respondents felt listened to (n = 101). Some 90.1% of patients (n = 71) felt listened to, but only 46.7% of carers (n = 30). (Note that the combined n here is small, as some people gave detailed answers rather than a Yes/No response, and are not counted in this calculation.) This is a statistically significant result.
Page 180 of 230 136
Whether felt listened to (all respondents, n = 101)
22.80%, 23% Felt listened to
77.20%, 77% Did not feel listened to
Figure 7: Whether felt listened to, all respondents (n = 101) Patient - listened Per cent saying felt listened to to, 90.10% Patient v Carer
Carer - not listened to, Carer - listened 53.30% to, 46.70%
Patient - not listened to, 9.90%
Figure 8: Whether felt listened to, by patient (n = 71) versus carer (n = 30)
4.2 Table 7 shows the percentage of carers who felt listened to, by their relationship to the patient. The results for small numbers of people are unlikely to be representative of the sub-group concerned, but it is noticeable that for the larger groups the percentage listened to is rather less than half.
Table 7: Felt listened to
Relationship to patient % of carers who felt listened to Base number My parent 41.7% n = 12 My son or daughter 100% n = 1 My relative 0% n = 2 My partner or spouse 41.7% n = 12 My friend 100% n = 3
Page 181 of 230 137 4.3 Table 8, below, shows the percentage of respondents who felt listened to, by the type of cancer they or the person they cared for had. Given the range and small size of most categories, these differences are not statistically significant, but of the larger groups breast cancer stands out as showing a high score.
Table 8: Felt listened to, by type of cancer
Type of cancer % feeling listened to Base number Brain / central nervous system 100% n = 1 Breast 90.9% n = 22 Colorectal / LGI / bowel 68.4% n = 19 Gynaecological 100% n = 7 Haematology and lymphoma 75% n = 8 Head and neck 83.3% n = 6 Lung 71.4% n = 7 Urology, prostate, etc. 78.3% n = 23 Skin 80% n = 5 Upper GI 66.7% n = 6 Sarcoma 100% n =1 Other 50% n = 4
4.4 Some 63% of those who felt listened to agreed to take part in interviews (n = 77), and 55% of those who had not felt listened to (n = 20).
4.6 Some 75.9% of females felt listened to, and 87.9% of males.
4.7 Table 9 shows that there is a dip in feeling listened to for the 6675 age group, though this might be just random sampling variation given the small sample.
Table 9: Felt listened to, by age group
Age range % who felt listened to Base number 1625 100% n = 1 2635 100% n = 3 3650 81.8% n = 11 5165 81.6% n = 38 6675 61.9% n = 21 75+ 89.5% n = 19
Page 182 of 230 138
Per cent feeling listened to % Who felt listened by age group to, 16-25, 100.0 % Who felt listened % Who felt listened to, 75+, 89.5 to, 36-50, 81.8 % Who felt listened % Who felt listened to, 26-35, 100.0 to, 51-65, 81.6
% Who felt % Who felt listened listened to to, 66-75, 61.9 Base number 51-65, 38
66-75, 21 75+, 19 36-50, 11
16-25, 1 26-35, 3
Age group
Figure 9: Whether listened to, by age group
4.8 Again, postcode analysis not useful, and analysis by ethnicity not possible.
5. If you fed back an issue, was it dealt with appropriately?
5.1 Overall, 67 people said they fed back an issue. Of these, 49.3% said it was dealt with appropriately. The rest said that it was not.
5.2 Of patients, 55.3% said that their issue was dealt with appropriately (n = 47). Of carers, 35% said it was dealt with appropriately (n = 20). This is another instance of carers taking a more negative view.
Page 183 of 230 139
Whether a referred issue was dealt with appropriately (n = 67)
Issue dealt with appropriately 50.70%, 51% 49.30%, 49% Issue not dealt with appropriately
Figure 10: Whether an issue referred by the patient or carer was dealt with appropriately, in the opinion of the patient or carer
Whether issue dealt with appropriately - Patient v Carer
Patient - issue Carer - issue not dealt with dealt with appropriately, Patient - issue not appropriately, dealt with 55.30% Carer - issue dealt 65% appropriately, with 44.70% appropriately, 35%
Figure 11: Whether an issue referred by the patient (n = 47) or carer (n = 20) was dealt with appropriately, in the opinion of the patient or carer
5.3 Table 10 shows how carers' views on whether feedback was appropriately dealt with varied by relationship to patient. The base numbers are extremely small here.
Page 184 of 230 141 Table 10: % of carers saying issue fed back appropriately dealt with, by relationship to patient
Relationship to patient % saying appropriately dealt Base number with My parent 40% n = 5 My son or daughter 50% n = 2 My relative 25% n = 4 My partner or spouse 16.75% n = 6 My friend 66.7% n = 3
5.4 Table 11 shows how views of all respondents on whether feedback was appropriately dealt with vary by type of cancer. Again, note that the base numbers are so small that little reliance can be placed on these comparisons.
Table 11: % saying they fed back an issue and it was appropriately dealt with, by type of cancer
Type of cancer % saying dealt with Base number appropriately Brain / central nervous system 100% n = 2 Breast 66.7% n = 12 Colorectal / LGI / bowel 46.2% n = 13 Gynaecological 57.1% n = 7 Haematology and lymphoma 50% n = 4 Head and neck 25% n =4 Lung 71.4% n = 7 Urology, prostate, etc. 57.1% n = 14 Skin 33.3% n = 3 Upper GI 33.3% n = 3 Sarcoma 0% n = 1 Other 20% n = 5
5.5 Table 12 shows views on whether feedback was appropriately dealt with, by the organisation to which views were fed back. The differences in this table are not statistically significant, so they could just be due to random variation; but perhaps the main conclusion to draw is that, overall, no organisation is likely to have a rating much above 65%, with several below that level.
Table 12: % saying they fed back an issue and it was appropriately dealt with, by organisation fed back to
Organisation % saying dealt with Base number appropriately PALS 21.4% n = 14 Hospital complaint services 0% n = 1 Macmillan cancer support 65% n = 20 North East Essex cancer user group 50% n = 2 Hospital governor 100% n = 1 Your GP 42.3% n = 26 Voluntary or community group 66.7% n = 3 Patient Opinion or other sites 50% n = 4 Other 49.3% n = 67 Note: These categories are not mutually exclusive.
Page 185 of 230 140 5.6 When it came to willingness to be interviewed, 80.6% of those who felt their feedback had been dealt with appropriately (n = 31) were willing, compared with only 63.6% (n = 33) of those who felt their feedback had not been dealt with appropriately. Thus, it seems likely that having previously made an unsuccessful effort to improve services deters people from making further attempts.
5.7 Some 55.9% of females felt that their fed back issue had been dealt with appropriately (n = 34), compared with 42.3% of males (n = 26).
5.8 Table 13 and Figure 13 show the percentage of respondents who fed back an issue and who felt that it had been dealt with effectively, by age group.
Table 13: Fed back issue dealt with appropriately, by age group
Age range % saying dealt appropriately Base number 1625 No data No data 2635 No data No data 3650 50% n = 6 5165 43.5% n = 23 6675 42.1% n = 19 75+ 66.7% n = 12
Per cent saying issue dealt with appropriately, by age group
% saying dealt appropriately, 75+, 66.7 % saying dealt appropriately, 36-50, 50.0 % saying dealt
% saying dealt % saying dealt 42.1 appropriately, 51-65, appropriately 43.5 Base number
51-65, 23 % saying dealt 66-75, 19
0.0 75+, 12 % saying dealt appropriately, 26-35, 36-50, 6 0.0 16-25, 0 26-35, 0 Age group
Figure 12: Per cent saying issue dealt with appropriately, by age group
5.9 Again, no analysis by postcode or ethnicity is possible.
6. The most satisfied people
Page 186 of 230 142 6.1 The responses were filtered so that the characteristics of the most satisfied set of respondents could be examined separately. The filter included anyone who had given satisfied scores for treatment and care and who also said that their views had been listened to and that any feedback they gave had been appropriately dealt with.
6.2 There were 19 such people. Of these, 15 were patients and 4 were carers. 6.3 Of the carers, one was with a parent who was being treated, one was with a partner or spouse, and two were with a friend.
6.4 The cancers these people or their parent, partner or friend had were: Breast cancer 3 Lower GI 5 Gynaecological 2 Haematology 1 Head and neck 1 Lung 1 Urology 4 Skin 1 Upper GI 1
6.5 Of these 19 people:
7 fed back to Macmillan cancer support 1 fed back to hospital governor 6 fed back to GP 1 fed back to voluntary or community group 1 fed back to Patient Opinion or other website
These categories are not mutually exclusive.
6.6 'Other comments' made by the most satisfied group made on feeding back are shown in Table 14 below. They indicate that even though people may place themselves in this most satisfied group by their answers to evaluative questions, they are still able to suggest improvements.
Page 187 of 230 143 Table 14: Comments from the 'Most Satisfied' Group
Other (please specify)
Cumulative Frequency Percent Valid Percent Percent Valid No comment made 15 78.9 78.9 78.9 I wrote a letter to the hospital thanking 1 5.3 5.3 84.2 everyone for their help. Letter to Chief Executive (the latest one!) 1 5.3 5.3 89.5 Letter of thanks to surgeon responsible for 1 5.3 5.3 94.7 operation To nursing staff on Mary Barron Suite directly. One issue re. awaiting blood transfusion whilst on Rhys Lewis Ward and not being informed re. 1 5.3 5.3 100.0 delays in blood being delivered. If kept informed, would have made situation more bearable. Total 19 100.0 100.0
6.7 Out of the 19 people in this group, 13 were interested in taking part in interviews.
6.8 Of the 19 people in this 'most satisfied' group, 10 were female and eight male, with one not saying which gender he or she was.
6.9 Table 15 shows the ages of the people in the most satisfied group. Again, one person did not supply their age.
Page 188 of 230 144 Table 15: Ages of people in 'most satisfied' group, by age group
Please tick the age range you or someone in your care belonged to while being treated in hospital
Cumulative Frequency Percent Valid Percent Percent Valid 3650 1 5.3 5.6 5.6 5165 7 36.8 38.9 44.4 6675 4 21.1 22.2 66.7 75+ 6 31.6 33.3 100.0 Total 18 94.7 100.0 Missing System 1 5.3 Total 19 100.0
6.10 As discussed before, it is difficult to use postcode data meaningfully from this survey, but for the record, the 'most satisfied' group were drawn from the following postcode districts:
Table 16: 'Most satisfied' group, by postcode Postcode district
Cumu lative Frequency Perce nt Valid Percent Per cent Valid 1 5.3 5.3 5.3
CM17 1 5.3 5.3 10.5
CO11 3 15.8 15.8 26.3
CO15 1 5.3 5.3 31.6 CO2 1 5.3 5.3 36.8
CO3 2 10.5 10.5 47.4 CO5 4 21.1 21.1 68.4
CO6 1 5.3 5.3 73.7 CO7 4 21.1 21.1 94.7
CO9 1 5.3 5.3 100.0 Total 19 100.0 100.0
7. The most dissatisfied people
7.1 This group consists of those who were dissatisfied with both treatment and care, who felt that they were not listened to, and that any issues they fed back were not dealt with appropriately.
7.2 There were 8 such people. Of these, 4 were patients and 4 were carers
7.3 Of the carers, 2 were with parents who were being treated, 1 with a relative and 1 with a partner or spouse.
Page 189 of 230 145 7.4 The 'most dissatisfied' respondents reported the following cancers: Breast 2 LGI 2 Haematology 1 Lung 1 Urology 2
7.5 This group fed views back as follows: 3 fed back to PALS 1 fed back to hospital complaints service 2 to Macmillan cancer support 4 fed back to GP 1 fed back to Patient Opinion or other website
These categories are not mutually exclusive.
7.6 'Other comments' made by the 'most dissatisfied group' on feeding back are shown in Table 17 below. This shows that people can feel disempowered, have unduly low expectations and that negative experiences can outweigh positive ones.
Table 17: Comments made by 'most dissatisfied' group
Other (please specify)
Cumulative Frequency Percent Valid Percent Percent Valid No comment made 5 62.5 62.5 62.5 Did not know could complain or to whom. 1 12.5 12.5 75.0 Very low in health - still not good. Macmillan positive. GP 1 12.5 12.5 87.5 negative No we didn't feedback as we thought the care
received at the time was correct and following 1 12.5 12.5 100.0 procedure and protocol, but now feel it may have been below standard! Total 8 100.0 100.0
7.7 The gender of the most dissatisfied group is shown in Table 18.
Page 190 of 230 146 Table 18: Gender of the 'most dissatisfied' group What is your gender?
Cumulative Frequency Percent Valid Percent Percent Valid Female 5 62.5 83.3 83.3 Male 1 12.5 16.7 100.0 Total 6 75.0 100.0 Missing System 2 25.0 Total 8 100.0
7.8 The age distribution of the 'most dissatisfied' group is shown in Table 19 below.
Table 19: Ages in 'most dissatisfied group'
Please tick the age range you or someone in your care belonged to while being treated in hospital
Cumulative Frequency Percent Valid Percent Percent Valid 5165 2 25.0 28.6 28.6 6675 4 50.0 57.1 85.7 75+ 1 12.5 14.3 100.0 Total 7 87.5 100.0 Missing System 1 12.5 Total 8 100.0
7.9 The postcode district of domicile of the 'most dissatisfied' group is shown in Table 20 below.
Table 20: 'Most dissatisfied group' by postcode district Postcode district
Cumu lative Frequency Perce nt Valid Percent Per cent Valid 1 1 2.5 12.5 12.5 CM9 1 1 2.5 12.5 25.0 CO3 2 2 5.0 25.0 50.0 CO5 2 2 5.0 25.0 75.0 CO6 1 1 2.5 12.5 87.5 CO9 1 1 2.5 12.5 100.0 Total 8 10 0.0 100.0
Page 191 of 230 147 8. Correlations among the key evaluation scores
8.1 The key evaluation scores used in the analysis of the survey are satisfaction with treatment, satisfaction with care, feeling listened to and feeling that any feedback given was dealt with appropriately.
8.2 It is interesting to look at how strongly these evaluation scores are related. To do this, we have used correlation tests. These show the strength of the relationship in a range from -1 to +1, where 0 indicates no relationship at all, -1 a perfect negative relationship (as one goes up, the other goes down), and +1 a perfect positive relationship (as one goes up, the other goes up, etc.). Table 21 gives the results, along with the number of cases used in calculating each correlation coefficient.
8.3 Key points to pick out are that:
there is a strong positive relationship between attitudes to treatment and to care (0.869); the strongest relationship for 'feeling listened to' is with satisfaction with care (0.700); and the strongest relationship for 'feedback dealt with appropriately' is, unsurprisingly, with 'feeling listened to' (0.684), but on a small sub-sample.
Table 21: Correlations among the key evaluation measures
Satisfaction with Satisfaction with Felt listened to Feedback dealt treatment care with appropriately Satisfaction with 1 0.869 0.683 0.517 treatment n = 148 n = 148 n = 101 n = 67 Satisfaction with 0.869 1 0.700 0.643 care n = 148 n = 148 n = 101 n = 67 Felt listened to 0.683 0.700 1 0.684 n = 101 n = 101 n = 101 n = 39 Feedback dealt 0.517 0.643 0.684 1 with n = 67 n = 67 n = 39 n = 67 appropriately
Notes: 1. Evaluation measures have been transformed to align the scoring so that low is always poor, high good. The full five-scale satisfaction measures have been used, with two-scale measures for 'listened to' and 'dealt appropriately'. 2. Given that the data is essentially ordinal, Spearman's rho has been used for the correlation test, which usually gives lower levels of correlation but is a safer test in this case.
Technical
1. All analysis has been done on data as it was at 9th May 2014. Analysis has been done using IBM SPSS Statistics, with graphing in Excel.
2. The satisfaction with treatment and satisfaction with care scores have been turned from five point scales to two point scales for tabular analysis, as follows:
Page 192 of 230 148
ORIGINAL VALUE NEW VALUE Dissatisfied Dissatisfied Not very satisfied Dissatisfied Satisfied Satisfied Very satisfied Satisfied Extremely satisfied Satisfied
3. However, correlation coefficients have been calculated using the original five-point scale for satisfaction with treatment and with care. In addition, the order of the {1, 2} binary scales has been reversed for 'feeling listened to' and 'issues fed back were dealt with appropriately', so that the negative to positive polarity for all four questions is the same.
4. For statistical testing, the relatively simple approach of using chi-squared analysis for tables and Spearman's rho for correlations has been adopted. No result has been accepted as statistically significant unless its probability is less than 5%.
5. For information, the postcode districts of residence supplied by respondents were as shown in the following table. There are, typically, tens of thousands of households per postcode district, making it pointless to link the postcode district to, e.g., Index of Multiple Deprivation 2010 score for lower super output areas, in order to analyse socio-economic characteristics:
Postcode district Number % of total Not given 41 23.84 CB9 1 0.58 CM17 1 0.58 CM29 1 0.58 CM3 2 1.16 CM8 1 0.58 CM9 2 1.16 CO1 4 2.33 CO10 1 0.58 CO11 8 4.65 CO12 4 2.33 CO13 4 2.33 CO14 4 2.33 CO15 10 5.81 CO16 1 0.58 CO2 10 5.81 CO3 15 8.72 CO4 14 8.14 CO5 16 9.30 CO6 9 5.23 CO7 15 8.72 CO9 8 4.65 TOTAL 172 100 Page 193 of 230 149 6. Respondents were asked to supply the first four characters of their postcode. This would, in most cases, yield the postcode sector, e.g. CO9 3, at which level there are typically 3,000 households, however, because of the varying number of digits in the first half of the postcode, many respondents were only able to give the postcode district, e.g. CO9.
Page 194 of 230 150 Essex
Strategic Plan 2013-2016
An independent voice Page 195 of 230for the people of Essex Contents
1. What is Healthwatch Essex? 2
2. Why Healthwatch? 3 A people’s champion A legal requirement Our challenge
3. How will we work? 4 Our principles A complex landscape A ‘peaks and troughs’ model Who will listen to Healthwatch?
4. Our work 7 Outreach and engagement • Volunteers • Training • Voice Network
Research
5. A timetable for change 9
This is a huge challenge, but we believe that we can make a difference
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1 1. What is Healthwatch Essex?
Our vision is to be an independent voice for the people of Essex, helping to shape and improve local health and social care services.
We are an independent organisation with powers in law. We believe that people’s views and lived experience of health and social care matter. And we are here to make their voice heard.
By capturing and articulating people’s voice, we can positively influence the commissioning and delivery of health and social care in Essex.
This is a huge challenge, but we believe that we can make a difference.
Our aim is to create a thriving network of trained volunteers, who can engage effectively with the public, who can carry out high quality social research, and who can influence the decisions made by local and national health and social care authorities. This requires us to work constructively, and in partnership, with the NHS and local authorities, as well as the county’s many voluntary and community organisations.
Our ambition is to be an effective agent of local change, and to reflect the highest standards of national and international best practice.
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2 2. Why Healthwatch?
A people’s champion In turn, commissioners and providers have We know that, historically, the health and a responsibility to listen to Healthwatch social care system hasn’t always listened to Essex, and to respond to our reports and patients, users, carers, or the public at large. recommendations within 30 days, saying Indeed, neither has it convinced people that what actions they intend to take and, if when the system does listen, it will act. none, why.
Our research shows that users of health
and social care overwhelmingly want their Our challenge Our task is to engage with the people experiences to be used to make the system of Essex, to listen to their voice, and to better for everyone. But many people don’t gather their lived experience of health know how to share their views, even if they and social care. At the same time, we also wish to, and feel that their involvement have to tackle a culture and practice within wouldn’t make any difference. health and social care that has not always encouraged meaningful engagement and A legal requirement involvement. Our challenge is to answer To address this problem, the Government the question that was put to us by one passed the Health and Social Care Act user of Essex health and social care – ‘If 2012 that aims to ‘put patients and the Healthwatch is going to listen to me, who is public first’ through strengthening their going to listen to Healthwatch?”. collective voice. This Act created a national network of local Healthwatch organisations, This Plan outlines how we intend to meet and a national umbrella organisation, this challenge over the next three years. Healthwatch England, from April 2013.
Under this legislation, Healthwatch Essex has a responsibility to: promote and support the involvement of people in the commissioning, provision and scrutiny of local care services obtain the views of people about their needs for, and their experiences of, local care services make reports and recommendations about how local care services could be improved Page 198 of 230 Source: Local Government and Public Involvement in Health Act, 2007, as amended by the Health and Social Care Act, 2012 3 3. How will we work?
Our principles Our work is underpinned by a series of principles that we believe lay the foundation to Healthwatch Essex being an effective voice for the people of Essex.
We will:
• be a strong, local citizen voice, making a difference to health and social care provision for the people of Essex
• collect the real voice of the people of Essex
• set the standard for excellent public engagement
• provide innovative ways to gather the lived experience of the people of Essex
• be a network of networks
• build the capacity and use the existing expertise of voluntary sector and community groups in Essex
• use our networks and public engagement to gather meaningful and robust local evidence and intelligence, capable of influencing key decision making in health and social care
• provide a platform from which diverse and seldom heard voices from across all Essex can be heard
• work hard to be a respected and credible organisation, working in partnership People do not know how to share across all sectors of health and social care views, but they’ve certainly got views – there’s a whole group of • be unafraid to challenge service providers and commissioners people not being listened to
Focus group attendee, cited in ‘User engagement research’, • ensure that all Essex people have access conducted on behalf of Healthwatch Essex, 2012 to timely and good quality information and advice Page 199 of 230
4 A complex landscape By contrast, the core Healthwatch Essex We work within a health and social care team of staff is small. This includes a landscape that is vast and complex. It Chief Executive Officer, a Commissioning covers a population of nearly 1.5m people and Research Manager, an Engagement (not including Southend and Thurrock) Manager, a Communications Lead, and an and has an annual expenditure of around Administrator. We’re very aware that we £3.4bn in 2013-14. The sector is hugely need to target our limited resources where fragmented, with many local, regional and they can achieve maximum impact and to national bodies. address unmet needs.
We have thought carefully about our role, The landscape of Health and how we can work constructively and Social Care in Essex with our partners across health and • Five Clinical Commissioning social care. This includes the groups, Groups forums and committees whose role it is to engage and involve the public and • NHS England service users. It also includes the many • Essex Health and Wellbeing Board voluntary and community organisations in Essex, which already represent the • Twelve district, borough and city views and experiences of their members councils and beneficiaries. We do not intend to • Five acute hospital trusts ‘re-invent the wheel’, but to work together with existing groups, organisations and • Two mental health partnership networks. trusts We also recognise the historic • Essex County Council Social Care shortcomings of the health and social care • Health Education East of England system to engage and involve its patients and service users in an effective or • East of England Ambulance Trust meaningful way. We must therefore work • Community providers to raise not only the profile, but also the quality of engagement and involvement • Care Quality Commission/Monitor across health and social care. • Thousands of voluntary organisations
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5 A “peaks and troughs” model We do not undertake individual advocacy or Our approach to prioritising our work complaints work. We are here to build up a is based on what we call the ‘peaks and picture of where people feel care is good and troughs’ model (see diagram). where it needs improving.
Cross-cutting issues Who will listen to Healthwatch? We already have some influence due to NHS e.g. Patient Social Care Older people our powers in law. But we recognise that Reference e.g. Planning e.g. Age UK Groups Groups Essex these powers only become meaningful if Healthwatch Essex is perceived to be a constructive, credible and respected partner. That’s why we’re working hard to build relationships, and to ensure that we are an equal, but independent, partner on Seldom heard Self-help and or marginal community the county’s many partnership Boards, Level or intensity of engagement of intensity or Level groups groups committees and forums. Areas of health and social care We sit on the: This recognises that the level of patient and public engagement is inconsistent • Health and Wellbeing Board across health and social care. At the • Quality Surveillance Group so-called ‘peaks’ where levels of engagement are already high (such as • Essex Workforce Partnership where there are existing patient groups (Health Education East of England) or voluntary groups), we can add value by • Essex Joint Strategic Needs sharing information and promoting good Assessment Steering Group practice. But where there are ‘troughs’ of engagement (such as around the care We also work closely with statutory partners needs of marginal or ‘seldom heard’ and voluntary organisations to make sure groups), we can be more proactive in their aspirations and arrangements for gathering and highlighting people’s voice. engaging and involving people are fit for Most importantly, our position as a purpose. Working in partnership does not countywide, independent organisation mean that we shy away from adopting a provides us with a unique ‘whole-systems’ critical stance – we will always challenge our perspective. We will tackle the cross- partners where we feel this is right. cutting issues that affect all users of health and social care, such as when service quality falls down at the intersections between organisations.
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6 4. Our work
Our work can broadly be divided into two key strands: outreach and engagement, and research.
Outreach and engagement • Volunteers There are three types of Volunteers are at the heart of Healthwatch Healthwatch Essex Ambassador: Essex. Known as ‘Ambassadors’, they help Community Ambassadors link us to reach out, capture and articulate the Healthwatch Essex to the citizens of views of a very large and varied population. Essex. They are the ‘eyes and ears’ of We also know that peer engagement and the organisation, gathering people’s participation within communities is the voice and lived experience. most effective way of gathering people’s voice and lived experience. Strategic Ambassadors are the link between Healthwatch Essex • Training and statutory organisations, such We expect all our Ambassadors to be as Clinical Commissioning Groups, effective in their roles, and we want them to NHS Trusts and local authorities. feel supported and engaged in meaningful They support these organisations activities. All our Ambassadors undergo to engage and involve people in the tailor-made, rigorous training, designed development and delivery of health with our training partner, Voluntary and social care services. Sector Training. This equips them with the skills they need to listen and gather lived Research Ambassadors carry out experience, and to be effective in liaising high-quality, applied social research with and influencing statutory partners. into particular issues. They may be involved in carrying out Our Research Ambassadors will benefit questionnaires, focus groups, from peer research training designed by or interviews. Anglia Ruskin University.
To help raise the standard of patient and public engagement and involvement, and to build capacity within Essex, we also offer our training to health, social care and voluntary sector partners.
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7 • Voice Network Research We know that we’re not the only To be an influential voice for the people of organisation speaking up on behalf of the Essex, we believe our recommendations people of Essex. By joining forces with need to be firmly rooted in evidence. local voluntary and community groups That’s why, alongside our outreach and that are working first hand with patients engagement work, we also undertake and service-users, as well as their family applied social research. This includes members, carers, friends, and colleagues, studies into specific topics, large and small, we can build a comprehensive picture of to better understand people’s views and health and social care in Essex. We call this experiences. our “Voice Network” and have grouped our Our aim is to use innovative and rigorous activities around six main themes: methods of social research, and to make Healthwatch Essex visible on a national 1. Health services, including scale, competing alongside comparable primary and acute care charities, think tanks and universities. 2. Mental health The principles of co-production and 3. Children and young people participation are central to our research programme. 4. Carers Much of this work will be run ‘in house’, 5. Disability (including physical, overseen by our Commissioning and sensory and learning disabilities) Research Manager, and involving our 6. Older people Research Ambassadors. But we recognise that we won’t always have the skills or We’re inviting local health and social care capacity within Healthwatch Essex, and so charities and organisations to become a we will collaborate with and commission member of one or more of these virtual research from external organisations, local networks of experience and expertise. We universities, NHS and social care agencies, will ask these groups for their insight on a and voluntary organisations. particular issue, and share with them the outcomes of our work.
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8 5. A timetable for change 2013 – 2014 Make Healthwatch The tasks set out in this Strategic Plan are Essex fit for purpose ambitious. But we believe they are also • our main focus is to necessary, if we are to be an independent establish our governance, voice for the people of Essex, helping to strategy, finance and staffing shape and improve health and social care. • we will raise awareness of Our challenge is to bring about a shift in the Healthwatch Essex among culture and practice of patient, service-user the general public, and and public engagement and involvement build relationships with and this will not happen overnight. the statutory and Our Strategic Plan sets out the steps we need voluntary sector to take over the next three years to achieve • we will position ourselves this vision. Our operational plan – available as a constructive and on request – provides more detail on how credible partner of the we intend to do this. NHS and social care Our success will be demonstrated by the esteem in which we are held by our statutory and voluntary partners and the general public, and by the difference we have made to local services.
On the horizon We are in discussion with Essex County Council to create a completely new and integrated information and signposting service across health and social care. The aim is to give people more control and choice about their health and care.
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9 2014 – 2015 Roll out networks of outreach and engagement • our key goal is to gather evidence of voice and lived experience from patients, service users and the public • we will recruit and train Healthwatch Essex Ambassadors – volunteers who will gather people’s voice and lived experience – and support our statutory partners to have patient engagement arrangements that are fit for purpose • we will launch our Voice Network, a local network which builds on the experience and expertise of health and social care organisations in the voluntary sector • we will establish our programme of applied social research
2015 – 2016 Focus on change and impact • we will be a confident and mature organisation, respected by our partners for giving evidence-based recommendations and finding solutions in common to the challenges facing health and social care in Essex • we will be embedded in the minds of the public as the organisation to make their voice heard • we will have made progress towards placing patients and service users at the heart of NHS and social care services
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10 Why not get involved?
Visit our website: www.healthwatchessex.org.uk
Follow us on Twitter: @HWEssex
Like us on facebook: /healthwatchessex
Email us: [email protected]
Phone us: 01376 572829
Write to us: RCCE House, Threshelfords Business Park, Inworth Road, Feering, Essex CO5 9SE
Page 206 of 230 March 2014 Healthwatch Essex. A company limited by guarantee and registered in England No. 8360699. Registered office as above. Healthwatch Essex - operational plan, 2014-15 as at 24/10/2014
Area Name of project/activity Short description. What will it involve? What do we hope to achieve? Timescales
Commissioning and CHUFT Cancer services patient experience study Qualitative study of patient experience of cancer services at Colchester Hospital. Feeds into NHS England's End of September 2014 research final Incident Management Team report, with significant wider learning for NHS and also HW.
Hospital discharge project A Who Will Care? priority, and tackles cross-cutting issues. MEHT and PAH willing to be research sites. May 2014 - Sep (TBC) 2015 Three initial phases: 1. Literature review; 2. User engagement to establish focus and research question; 3. Determine study design. Primary care study Primary care is consistently raised as an issue by many stakeholders - as in the strategic 'transformation' of October 2014 - March 2015 primary care (NHS England/LMC); by patients (e.g. access to GPs, access to other services, such as mental health and social care, via GPs); or as contributory factor to other pressures (e.g. emergency care). This study would engage citizens of Essex in a series of deliberative democracy workshops to debate and discussion about new NHS plans for the reform of primary care in Essex, and consider how primary care interacts with, affects access to, other related services, such as social care and mental health.
Carers Carers' consensus conference, based on themes raised in interviews conducted as part of phase 1 Sep-14 (Nov/December 2013). Countywide focus. Follow-up study in Autumn. Links to ECC integration agenda and preparation for Care Act requirements. CHUFT Follow up study on doctors’ and nurses’ Follow up to 'cancer services patient experience study' to identify professional perspective. Would also Proposed - TBC experiences of cancer care feed into NHS England's final Incident Management Team report. Research Ambassadors Continued recruitment of Research Ambassadors. Early stage proposal to change the training proposition, Autumn 2014 to training in ethnography either instead of or in additon to basic methods in applied social research.
Dementia report (follow up) Consensensus conference to follow up Healthwatch Essex report (2013). To tie into new Dementia TBC Alliance/ARHP approach. SDS and neurological conditions TBC
Outreach and Ambassador Network (Community and Strategic) Ongoing training and deployment. Also, development of marketable training 'offer' to local partners. Ongoing engagement Voice Network Ongoing development. Focus on movement of information. Ongoing Engaging and assisting statutory organisations Work with health and social care organisations, to help develop their engaging and involvement Ongoing mechanisms. There is a mutual interest in HWE working with statutory partners, so that good engagement and involvement becomes an integral part of the commissioning and provision of services. Opportunities for sharing information, exploring joint working. HWE membership of HOSC; opportunities for working in partnership. Foundation 66 project In partnership with Foundation 66, Healthwatch Essex will work with the Essex Support Advice and September 2014 - March 2015 Mentoring Service (SAMS) to identify people with alcohol and drug dependency issues around health & social care. Involves focus group, film. Will provide visibility and insight into hard to reach group.
LD project In partnership with LD organisations, Healthwatch Essex will create an LD focused ambassador volunteer September 2014 and ongoing role (including training) to be part of wider project around engagement and lived experience of people with LD in Essex.
Page 207 of 230 care.data In partnership with NHS England, Healthwatch Essex will host a public engagement event based around the 24th June - event. Follow up July 2014 care.data debate. Expert panel, 'Question Time' format. Will feed into NHS England 'listening' programme.
BSL In partnership with ECC, RAD and ecdp, Healthwatch Essex will work to evaluate the current provision Ongoing across health and social care around the availability of BSL signing services. Willl ensure equity of access to signing services and wider health/social care services. Reflects work undertaken also by HW Thurrock.
My Home Life project Healthwatch Essex sits on the steering board of the MHL project, with a specialist interest in volunteering. dec 2014-april 2015 The project is to initially to work collaboratively with MHL on how to engage with care homes and recruit and train high-quality volunteers to promote the MHL strategy. The project would look to build a lived experience component of people in care homes and meet a need for HWE to gather the lived experience of care home resident, their carers and their families . In 2015 MHL, AGE UK and other agencies will under take a 555 project. NCS (Young People project) In partnership with Essex Boys & Girls Club, Healthwatch Essex will recruit and embed a HWE member of July - December 2015 staff to work with and identify young people’s issue around health & social care. This is undertaken through the National Citizen Scheme. Will gain insight into diverse cross-section of 1500 young people.
Changing Attitudes Healthwatch Essex in partnership with Essex Boys and Girls Club, Active Essex and local youth clubs have Sept 2014 - Sept 2017 been award £101000 from Sport England to deliver a 3 year project. Healthwatch will be working with EB&GC to evaluate and record the health & social care needs of over 1100 young people across Essex over 3 years. MIND Hyperlink & PR Campaign To create a hyperlink from MIND websites to HWE website and monitor the Lived Experience stories being Oct 2014 - March 2015 offered from MIND service users. The pilot will offer us solid evidence around collecting lived experience from organisational websites. Energiser Project In partnership with FUSION Leisure Trust in Braintree and JCP we will be working on a mental health based Sept 2014 - Sept 2015 project around exercise and employment. This will be assessing the imapct of GP lead referrals to FUSION for exercise classes for people with mental health diagnosis. This is a microcosm of the GP lead referral system throughout Essex, giving HWE access to mentla health service users, GP's and integrated agencies such as NHS/JCP. Neurological network This a test of concept on how HWE works with a new network and how we engage with the seldom heard Oct 2014 - ongoing stories. We will offer them cordination and support and we will have access to lived experience and service users. PPG Development Day workshops The project is to deliver PPG development day workshops across the 5 CCG areas. Based on the work Jan 2015 (TBC) completed by HW East Sussex the aim is create a working system of feedback and user engagement for HWE, CCG's and the NHS. Mental Health Project (555) In partnership with ecdp, Healthwatch will undertake five mental health focus groups, recording five August - October 2014 mental health stories which will be five minutes long. This is a follow up piece of work from the Voice Network video around mental health. The individual stories will feed into CCGs, SEPT & NEFPT, and be part of a report around Mental Health in Essex. This will be launched in October on World Mental Health day.
Communications Ongoing website, social media and newsletters To provide a platform for HWE publicity and two-way information exchange Ongoing
Page 208 of 230 Annual Report Produce Healthwatch Essex's first Annual Report, showcasing the work we have done in the past year to March-June establish our governance, staffing and finance; set up our Ambassador network; engage with the statutory & voluntary sector; carry out in-depth studies; and raise awareness of the organisation.
Raising awareness of Healthwatch Essex within the Builiding on the success of last year's Make Your Voice Heard campaign which targetted primary care and June-Nov social care sector outdoor media, we will start Phase 3 which focuses on social care . By working in partnership with voluntary sector organisations & groups, and ECC social care, we aim to raise our profile within the social care sector. As with Phase 1, this will involve a poster campaign. Raising awareness of Healthwatch Essex among GPs Work with CCGs, LMC, CSUs and EQUIP to reach GPs (and other health professionals) directly – e.g. June-Nov (and other professionals - TBC) through newsletters; slots at practice manager meetings; direct mail outs. By working directly with GPs and other health professionals, who are at the point of delivery and who can signpost people to Healthwatch, we can ensure that we reach a larger section of the population and collect more experiences to help improve services. Information & signposting Pending final sign-off, our information & signposting service is planned to start from Sept 14. Whilst we are Sept-Mar in the pilot stage, there will be a soft launch Q3 (Sept-Nov) with some coverage in the local media. We will ramp up publicity in Q4 (Jan onwards). This is likely to involve a commissioned radio ad and possibly another bus campaign, as well as substantial outdoor advertising e.g. train cards, bus stops etc. In response to recommendations from the 'Who Will Care?' Commission, we will also produce a 'Citizens Guide to Care', which will be a multi-platform guide that will be informed by user experience (Sept 14 - Sept 15). Voice Network Films In Q4, we will complete the final 3 Voice Network films around Disability, Carers, and Health. These films Sept-Mar will follow the same format as the previous films on Young People, Mental Health and Older People, which have been viewed widely and have been very well received. We will work in partnership with the Voice Network and voluntary organisation to identify the right people to film in these videos, and to help us promote the finished films. Promote our research and engagement activities (eg Raise awareness of our research and engagement activites in the local press, broadcast media and social Ongoing CHUFT study, 555, NCS etc.) media channels. For Q1 this will be to encourage involvement in our cancer study, followed by publicising the results in Q3; Q2 - promote involvement in our 555 focus groups, followed by publicising results in Q3; Q2 - promote the NCS study, followed by publicising results in Q4.
Information and Infrastructure To October and beyond signposting Staffing To October and beyond Phase one - telephone service to be up and running by October 2014. Phase two - multi-channel platforms Comms and Stakeholder/user engagement To October and beyond to be delivered thereafter. Governance/budget/insurance/legal To October and beyond Operational - misc To October and beyond Signposting resources To October and beyond
Customer service Public contacts Ongoing Membership Ongoing
Page 209 of 230 Page 210 of 230 24th June - event. Follow up July 2014
Page 211 of 230
Page 212 of 230 AGENDA ITEM 7
HOSC/46/14
Committee Health Overview and Scrutiny Date 5 November 2014
GENERAL UPDATE
Report by Graham Hughes, Scrutiny Officer Contact details: [email protected] Tel: 03301 34574
Recommendation:
The Committee is asked to note the updates on various health matters outlined below: ______
Local Clinical Commissioning Groups – news
Web addresses http://www.basildonandbrentwoodccg.nhs.uk/news http://castlepointandrochfordccg.nhs.uk/news-a-events http://www.midessexccg.nhs.uk/news-events http://www.neessexccg.nhs.uk/News%20and%20Events/News/Current%20News.html http://www.westessexccg.nhs.uk/news
National issues
NHS England Five Year Forward View
NHS England has published a Five Year Forward View. An extract of the full report, comprising the Executive Summary, is attached as an Appendix to this report. The full report has been emailed to HOSC Members.
Page 213 of 230 Local variations of service
GP surgeries in Hawkwell and Rochford
The HOSC has been advised that NHS England has recently begun the process of re- procuring GP services for the patients registered at Leecon Way (Rochford) and Hawkwell Drive (Hawkwell) surgeries. Both surgeries sit within the Castle Point and Rochford CCG boundary. The current Alternative Provider of Medical Services (APMS) contract is due to expire on 31st March 2015 and they are looking for a new provider to take over the contract with effect from 1st April 2015. There is no intention to cease the services or move them from their current location.
NHS England has advised that they also sent the notification to all local County Councillors in those two administrative areas. If this is not the case then please advise the Scrutiny Officer who can circulate more information to you.
Relocation of Ongar dental service
The HOSC has been advised that NHS England are considering a request from a West Essex dental practice delivering NHS dental services in Ongar to transfer its small contracted activity to his other dental practice in Brentwood (South West Essex). The practice offers a service one day a week from the Ongar premises. 1000 patients living in Ongar already use the Brentwood practice.
Whilst the Ongar practice does treat a large number of patients with disabilities and elderly patients who find its ground floor access very suitable, NHS England will guarantee registration of these patients at the practice in Brentwood which has recently been upgraded to include improved facilities for such patients - easy access reserved parking, ground floor surgeries and disabled toilet facilities.
Patients have been consulted.
Page 214 of 230 General Update Report - APPENDIX
NHS England-- Five Year Forward View
Extract taken from the full report published October 2014
EXECUTIVE SUMMARY
1. The NHS has dramatically improved over the past fifteen years. Cancer and cardiac outcomes are better; waits are shorter; patient satisfaction much higher. Progress has continued even during global recession and austerity thanks to protected funding and the commitment of NHS staff. But quality of care can be variable, preventable illness is widespread, health inequalities deep-rooted. Our patients’ needs are changing, new treatment options are emerging, and we face particular challenges in areas such as mental health, cancer and support for frail older patients. Service pressures are building.
2. Fortunately there is now quite broad consensus on what a better future should be. This ‘Forward View’ sets out a clear direction for the NHS – showing why change is needed and what it will look like. Some of what is needed can be brought about by the NHS itself. Other actions require new partnerships with local communities, local authorities and employers. Some critical decisions – for example on investment, on various public health measures, and on local service changes – will need explicit support from the next government.
3. The first argument we make in this Forward View is that the future health of millions of children, the sustainability of the NHS, and the economic prosperity of Britain all now depend on a radical upgrade in prevention and public health. Twelve years ago Derek Wanless’ health review warned that unless the country took prevention seriously we would be faced with a sharply rising burden of avoidable illness. That warning has not been heeded - and the NHS is on the hook for the consequences.
4. The NHS will therefore now back hard-hitting national action on obesity, smoking, alcohol and other major health risks. We will help develop and support new workplace incentives to promote employee health and cut sickness-related unemployment. And we will advocate for stronger public health-related powers for local government and elected mayors.
5. Second, when people do need health services, patients will gain far greater control of their own care – including the option of shared budgets combining health and social care. The 1.4 million full time unpaid carers in England will get new support, and the NHS will become a better partner with voluntary organisations and local communities.
Page 215 of 230 6. Third, the NHS will take decisive steps to break down the barriers in how care is provided between family doctors and hospitals, between physical and mental health, between health and social care. The future will see far more care delivered locally but with some services in specialist centres, organised to support people with multiple health conditions, not just single diseases.
7. England is too diverse for a ‘one size fits all’ care model to apply everywhere. But nor is the answer simply to let ‘a thousand flowers bloom’. Different local health communities will instead be supported by the NHS’ national leadership to choose from amongst a small number of radical new care delivery options, and then given the resources and support to implement them where that makes sense.
8. One new option will permit groups of GPs to combine with nurses, other community health services, hospital specialists and perhaps mental health and social care to create integrated out-of-hospital care - the Multispecialty Community Provider. Early versions of these models are emerging in different parts of the country, but they generally do not yet employ hospital consultants, have admitting rights to hospital beds, run community hospitals or take delegated control of the NHS budget.
9. A further new option will be the integrated hospital and primary care provider - Primary and Acute Care Systems - combining for the first time general practice and hospital services, similar to the Accountable Care Organisations now developing in other countries too.
10. Across the NHS, urgent and emergency care services will be redesigned to integrate between A&E departments, GP out-of-hours services, urgent care centres, NHS 111, and ambulance services. Smaller hospitals will have new options to help them remain viable, including forming partnerships with other hospitals further afield, and partnering with specialist hospitals to provide more local services. Midwives will have new options to take charge of the maternity services they offer. The NHS will provide more support for frail older people living in care homes.
11. The foundation of NHS care will remain list-based primary care. Given the pressures they are under, we need a ‘new deal’ for GPs. Over the next five years the NHS will invest more in primary care, while stabilising core funding for general practice nationally over the next two years. GP-led Clinical Commissioning Groups will have the option of more control over the wider NHS budget, enabling a shift in investment from acute to primary and community services. The number of GPs in training needs to be increased as fast as possible, with new options to encourage retention.
12. In order to support these changes, the national leadership of the NHS will need to act coherently together, and provide meaningful
Page 216 of 230 local flexibility in the way payment rules, regulatory requirements and other mechanisms are applied. We will back diverse solutions and local leadership, in place of the distraction of further national structural reorganisation. We will invest in new options for our workforce, and raise our game on health technology - radically improving patients’ experience of interacting with the NHS. We will improve the NHS’ ability to undertake research and apply innovation – including by developing new ‘test bed’ sites for worldwide innovators, and new ‘green field’ sites where completely new NHS services will be designed from scratch.
13. In order to provide the comprehensive and high quality care the people of England clearly want, Monitor, NHS England and independent analysts have previously calculated that a combination of growing demand if met by no further annual efficiencies and flat real terms funding would produce a mismatch between resources and patient needs of nearly £30 billion a year by 2020/21. So to sustain a comprehensive high-quality NHS, action will be needed on all three fronts – demand, efficiency and funding. Less impact on any one of them will require compensating action on the other two.
14. The NHS’ long run performance has been efficiency of 0.8% annually, but nearer to 1.5%-2% in recent years. For the NHS repeatedly to achieve an extra 2% net efficiency/demand saving across its whole funding base each year for the rest of the decade would represent a strong performance - compared with the NHS' own past, compared with the wider UK economy, and with other countries' health systems. We believe it is possible – perhaps rising to as high as 3% by the end of the period - provided we take action on prevention, invest in new care models, sustain social care services, and over time see a bigger share of the efficiency coming from wider system improvements.
15. On funding scenarios, flat real terms NHS spending overall would represent a continuation of current budget protection. Flat real terms NHS spending per person would take account of population growth. Flat NHS spending as a share of GDP would differ from the long term trend in which health spending in industrialised countries tends to rise as a share of national income.
16. Depending on the combined efficiency and funding option pursued, the effect is to close the £30 billion gap by one third, one half, or all the way. Delivering on the transformational changes set out in this Forward View and the resulting annual efficiencies could - if matched by staged funding increases as the economy allows - close the £30 billion gap by 2020/21. Decisions on these options will be for the next Parliament and government, and will need to be updated and adjusted over the course of the five year period. However nothing in the analysis above suggests that continuing with a comprehensive taxfunded NHS is intrinsically un-doable. Instead it suggests that there are viable options for sustaining and improving the NHS over the
Page 217 of 230 next five years, provided that the NHS does its part, allied with the support of government, and of our other partners, both national and local.
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AGENDA ITEM 8
HOSC/47/14
Committee Health Overview and Scrutiny Date 5 November 2014 Report by: Graham Hughes, Scrutiny Officer
Purpose of report
The purpose of this report is to set out the Committee’s current Work Programme and Tracker for consideration (see overleaf).
Task and Finish Groups
The Committee has agreed the setting up of two task and finish groups to undertake an in depth scrutiny review on:
Obesity issues in Essex; and Complaints handling in the health service,
At the last HOSC meeting their updated Terms of Reference were approved. Periodic updates will be provided to the full Committee.
Quarterly briefing days
A schedule of dates for quarterly briefing days is being established to supplement the main formal meeting schedule. These will enable members to be briefed in private on topical health issues and give the Committee the opportunity to consider issues that they may wish to investigate further.
The first quarterly briefing date has been set for Friday 5 December 2014 at County Hall. The broad theme for the day will be on reducing unnecessary A&E admissions, and, to date, there are two confirmed presenters. James Bullion, Director for Integrated Commissioning & Vulnerable People, will talk about the 100 Day Challenge in mid Essex where the work is focussed on frailty and falls strategy, and integrated health and social care teams. Ben Hughes, Head of Commissioning Public Health and Wellbeing, will be talking about initiatives to prevent admissions due to alcohol abuse.
A further briefing day is planned for March 2015 and thereafter dates will be confirmed on a quarterly basis.
Members are invited to suggest future items/issues for briefings – please discuss these with the Scrutiny Officer. Cabinet Member briefings Page 219 of 230
Councillor Brown, Cabinet Member for Adult Social Care and Health and Wellbeing, will update the Committee in private on issues within her portfolio on a periodic basis. These may be combined with the People and Families Scrutiny Committee if content is likely to cross the remits of both committees.
Offsite Visits
A further visit to North Essex Partnership Trust facilities adjacent to Broomfield Hospital, Chelmsford, is planned for Thursday 20 November 2014.
Visits to the East of England Ambulance Service Control Centre, also near Broomfield Hospital, and the new radiotherapy centre at Colchester Hospital are being planned.
Confirmed business for next meeting:
- Annual reports of the two Essex Mental Health Trusts. Other business to be confirmed.
Work Programme
A copy of the updated work programme and tracker for the Committee is attached at the Appendix.
Overall Scrutiny Committee activity is set out in the tracker facility that is part of the Council’s Scrutiny webpage via the following link: http://www.essex.gov.uk/Your- Council/Committees-Decision-Making/Scrutiny/Pages/Default.aspx
Action required by the Committee at this meeting:
To note the content of this report.
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HEALTH OVERVIEW AND SCRUTINY COMMITTEE: TRACKER AND WORK PROGRAMME (28 OCTOBER 2014)
PRE-MEETING POST-MEETING AGREED ACTION & IMPLEMENTATION
SCRUTINY ITEM & REF. LATEST ALL OUTCOMES, ACTIONS RESPONSIB REVIEW DATE IMPLEMENTATION REVIEW COMMITTEE COMMITT ARISING & UPDATES LE MEMBER/ DATE AND OUTCOME DATE(S) EE DATES OFFICER (Historical purposes)
North East Essex Clinical 08/10/2014 TBA Healthwatch to be Commissioning Group (NE included in the CCGs Essex CCG) – Emergency consultation process. Care Review Update in due course. Mid Essex Clinical 02/07/2014 TBA General update Commissioning Group received and consideration of financial challenges faced. Update in approx six months. Others to follow during the forthcoming months with more emphasis on engaging on themes. Mid Essex Hospital Services 10/09/2014 TBA General update NHS Trust received and consideration of financial challenges faced. Update in approx six months. Others to follow during the forthcoming months with more Pageemphasis 221 ofon 230 engaging on themes. HEALTH OVERVIEW AND SCRUTINY COMMITTEE: TRACKER AND WORK PROGRAMME (28 OCTOBER 2014)
PRE-MEETING POST-MEETING AGREED ACTION & IMPLEMENTATION
SCRUTINY ITEM & REF. LATEST ALL OUTCOMES, ACTIONS RESPONSIB REVIEW DATE IMPLEMENTATION REVIEW COMMITTEE COMMITT ARISING & UPDATES LE MEMBER/ DATE AND OUTCOME DATE(S) EE DATES OFFICER (Historical purposes) Primary Care Strategy 10/09/2014 07/05/2014 Update on Primary Care Strategy and provided information on GPs in Essex. Further information sought on development thresholds and GP consultation. Consider follow-up with CCGs. ECC Commissioning Strategy 23/07/2014 Commented on and - Public Health and Wellbeing broadly supportive of strategy as presented. Dementia Task and Finish 03/04/2013 TBA Latest update on Group report- implementation implementation of of recommendations recommendations from scrutiny was provided in April 2013. Agreed further regular updates to be provided. South Essex Partnership TBA TBA Deferred from Trust- remodelling of inpatient December 2012 services meeting- ON HOLD Page 222 of 230 HEALTH OVERVIEW AND SCRUTINY COMMITTEE: TRACKER AND WORK PROGRAMME (28 OCTOBER 2014)
PRE-MEETING POST-MEETING AGREED ACTION & IMPLEMENTATION
SCRUTINY ITEM & REF. LATEST ALL OUTCOMES, ACTIONS RESPONSIB REVIEW DATE IMPLEMENTATION REVIEW COMMITTEE COMMITT ARISING & UPDATES LE MEMBER/ DATE AND OUTCOME DATE(S) EE DATES OFFICER (Historical purposes) Francis Report 12/06/2013 TBA Update received in June 2013. Subsequently considered as part of the Topic Selection process undertaken in 2014. Complaints Handling was identified as a significant issue identified in the report which should be investigated further via the establishment of a Task and Finish Group. Maldon Hospital TBA TBA Review of services ON HOLD Pan-Essex Maternity TBA TBA Further update to the Capacity Plan presentation received in December 2012
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PRE-MEETING POST-MEETING AGREED ACTION & IMPLEMENTATION
SCRUTINY ITEM & REF. LATEST ALL OUTCOMES, ACTIONS RESPONSIB REVIEW DATE IMPLEMENTATION REVIEW COMMITTEE COMMITT ARISING & UPDATES LE MEMBER/ DATE AND OUTCOME DATE(S) EE DATES OFFICER (Historical purposes) Colchester Hospital 02/07/2014 02/07/2014 CHUFT to : TBA 02/07/2014: Further update (HOSC/08/14) 05/02/2014 05/02/2014 (i) To provide a copy of and agreed to await contents of 08/01/2014 the agreed and further CQC report expected published summary imminently.02/04/2014: Update Cancer Care within General Update item. Action Plan (once it had 05/02/2014: Update on cancer been approved by care pathways and Keogh Monitor); Action plans. 08/01/2014: (ii) To re-attend before Arrangements for Scrutiny the HOSC three months agreed. 06/11/2013: Oral after the publication of update from Cabinet member. the 12/06/2013: Oral update from above Plan to update on Cabinet Member. 06/03/13: actions being taken; CHUFT presentation on Keogh (iii) That the review and mortality indicators. representatives from the NHS Area Team and CCG also attend this meeting; (iv) As the Standardised Hospital mortality index remained an issue, a further update on this should be included in the Hospital’s update when Page 224 of 230 they next appear before the Committee HEALTH OVERVIEW AND SCRUTINY COMMITTEE: TRACKER AND WORK PROGRAMME (28 OCTOBER 2014)
PRE-MEETING POST-MEETING AGREED ACTION & IMPLEMENTATION
SCRUTINY ITEM & REF. LATEST ALL OUTCOMES, ACTIONS RESPONSIB REVIEW DATE IMPLEMENTATION REVIEW COMMITTEE COMMITT ARISING & UPDATES LE MEMBER/ DATE AND OUTCOME DATE(S) EE DATES OFFICER (Historical purposes) Basildon Hospital 02/07/2014 02/07/2014 BHUFT (i) To provide a TBA 02/07/2014: Noted taken out of (HOSC/36/13) 01/04/2014 01/04/2014 written update on Special Measures although 06/11/2013 implementation of the one of eight CQC ratings still action plan; required improvement and (ii) To attend a meeting written update to be sought in of the HOSC in four months time.05/02/2014: approximately six Membership for joint scrutiny months time (exact noted. 08/01/2014: Revised timing to be confirmed arrangements for scrutiny in consultation with the agreed (joint HOSC with Chairman) once the Thurrock to be held on 1 April majority of the action 2014). 11/09/2013: Report on pan had been Thurrock HOSC receiving a implemented and presentation from BUHFT after most winter regarding action plan pressures had passed; addressing Keogh concerns. (iii) That the HOSC 12/06/2013: Oral update from should continue to Cabinet Member. monitor the situation in case the above timing for a visit by BHUFT needed to be amended. Complaints Handling 02/07/2014 02/07/2014 The Committee agreed to establishPage 225a Task of 230 and Finish Group at its meeting on 2 July 2014 HEALTH OVERVIEW AND SCRUTINY COMMITTEE: TRACKER AND WORK PROGRAMME (28 OCTOBER 2014)
PRE-MEETING POST-MEETING AGREED ACTION & IMPLEMENTATION
SCRUTINY ITEM & REF. LATEST ALL OUTCOMES, ACTIONS RESPONSIB REVIEW DATE IMPLEMENTATION REVIEW COMMITTEE COMMITT ARISING & UPDATES LE MEMBER/ DATE AND OUTCOME DATE(S) EE DATES OFFICER (Historical purposes) Obesity issues in Essex 02/07/2014 02/07/2014 The Committee agreed to establish a Task and Finish Group at its meeting on 2 July 2014 North East Essex Clinical 04/06/2014 04/06/2014 Response to Big Care Barbara Herts Commissioning Group Debate consultation. Update Further update in due course.
Child and Adolescent Mental 04/06/2014 04/06/2014 Reconfiguration of Tier Cllr Anne Autumn 2014 Health Services (CAMHS) 2 and 3 services. Brown Further update in the autumn of 2014.
Page 226 of 230 HEALTH OVERVIEW AND SCRUTINY COMMITTEE: TRACKER AND WORK PROGRAMME (28 OCTOBER 2014)
PRE-MEETING POST-MEETING AGREED ACTION & IMPLEMENTATION
SCRUTINY ITEM & REF. LATEST ALL OUTCOMES, ACTIONS RESPONSIB REVIEW DATE IMPLEMENTATION REVIEW COMMITTEE COMMITT ARISING & UPDATES LE MEMBER/ DATE AND OUTCOME DATE(S) EE DATES OFFICER (Historical purposes) East of England Ambulance 02/04/2014 02/04/2014 (i) That EEAST revisit in November 2014 05/02/2014 Update: Service (HOSC/29/13) 09/10/2013 six months’ time to Subsequently there has been a provide an update on further CQC report, following their an inspection on the 29th of turnaround strategy; January, which re-confirmed (ii) A link to two areas still needing action: benchmarking data for the care and welfare of people the key performance using services and staffing. indicators be provided This directly related to the to issue of ambulance response the Committee Officer times. EEAST have for circulation to the reconfirmed they still have a Committee; high number of paramedic (iii) Further information vacancies. 08/01/2014 Update: on the number and Advised of new senior location of paramedics appointments. in Essex and surrounding areas be provided to the Committee Officer for circulation to the Committee. Page 227 of 230 HEALTH OVERVIEW AND SCRUTINY COMMITTEE: TRACKER AND WORK PROGRAMME (28 OCTOBER 2014)
PRE-MEETING POST-MEETING AGREED ACTION & IMPLEMENTATION
SCRUTINY ITEM & REF. LATEST ALL OUTCOMES, ACTIONS RESPONSIB REVIEW DATE IMPLEMENTATION REVIEW COMMITTEE COMMITT ARISING & UPDATES LE MEMBER/ DATE AND OUTCOME DATE(S) EE DATES OFFICER (Historical purposes) Public Health Annual Report 08/01/2014 08/01/2014 The Commissioning Cllr Ann N/A NO FURTHER ACTION and Commissioning Intentions were Naylor, Intentions (HOSC/02/14) discussed and noted. Cabinet Member for Public Health and Wellbeing Dr Mike Gogarty Director for Public Health South Essex Partnership 06/11/2013 06/11/2013 The report was noted. N/A 08/01/2014: further information University NHS Foundation Further information on on complaints handling Trust: Annual Report complaints handling received and noted. NO (HOSC/34/13) was requested. FURTHER ACTION Healthwatch (HOSC/37/13) 06/11/2013 06/11/2013 It was agreed David Sollis N/A 08/01/2014: HWE newsletter that further information received and noted. NO on HWE, including a FURTHER ACTION. HWE newsletter, would be distributed to HOSC members. Page 228 of 230 HEALTH OVERVIEW AND SCRUTINY COMMITTEE: TRACKER AND WORK PROGRAMME (28 OCTOBER 2014)
PRE-MEETING POST-MEETING AGREED ACTION & IMPLEMENTATION
SCRUTINY ITEM & REF. LATEST ALL OUTCOMES, ACTIONS RESPONSIB REVIEW DATE IMPLEMENTATION REVIEW COMMITTEE COMMITT ARISING & UPDATES LE MEMBER/ DATE AND OUTCOME DATE(S) EE DATES OFFICER (Historical purposes) Commissioners for Mental 06/11/2013 06/11/2013 The report was noted. N/A NO FURTHER ACTION Health: report on partnership accounts 2012/13
North Essex Partnership 06/11/2013 06/11/2013 The report was noted. N/A NO FURTHER ACTION. University NHS Foundation Trust: Annual Report (HOSC/35/13)
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