EACH Quality Account 2012-2013

The EACH Vision

All families of children and young people with life-threatening illnesses or complex

health care needs are able to access

appropriate services of high quality.

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Contents

Item Page number Part 1 Chief Executive’s statement 3

Part 2 Priorities for improvement and 4 statements of assurance from the Board 2.1 Priorities for improvement 2013-14 4 2.2 Statements of assurance 6 2.2.1 Review of services 6 2.2.2 Participation in national clinical audits 7 2.2.3 Participation in local audits 7 2.2.4 Participation in clinical research 8 2.2.5 Use of the Commissioning for Quality 9 Improvement and Innovation (CQUIN) payment framework 2.2.6 What others say about EACH 10 2.2.7 Data quality 10 2.2.8 Clinical coding error rate 11

Part 3 Review of quality performance 11 3.1 Priorities for improvement 2012-13 12 3.2 Additional quality markers 16 3.3 Involving children and families 22 3.4 Involving EACH staff 23 3.5 Statements from Healthwatch, Clinical 23 Commissioning Groups and Overview and Scrutiny Committees

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Part 1. Chief Executive’s Statement

I am delighted to present the first EACH Quality Account.

On behalf of myself and the Board of Trustees, I would like to thank all of our staff and volunteers for their achievements over the past year. Despite the current economic climate, the hospice has continued to provide specialist palliative care to more children and families and remains financially sound, thanks to generous support from our local communities and our partnerships with the statutory sector.

EACH has a culture of continuous quality improvement, in which opportunities to improve care delivery and any shortfalls are identified and acted upon quickly. The safety, experiences and outcomes for children, young people and their families are of paramount importance to us all at EACH. Our clinical governance committee, a sub committee of the EACH Board, provides assurance, oversight and scrutiny on all matters relating to the quality of care.

The Care Quality Commission inspected each of our three hospices services based at Milton, Cambridge, Quidenham, Norfolk and the Treehouse in Ipswich, Suffolk and assessed that the treatment and care provided was fully compliant with all of the essential national standards for care.

Service users are encouraged to tell us about their experiences through a variety of means. These include one to one reviews with families, the EACH website feedback section for families, comments slips in the family newsletter, Facebook and twitter. There are also three locality based family forums and three Trustees with service user experience on the Board and Clinical Governance Committee.

In 2012, EACH invested in a three year care development programme to improve further the safety and quality of care and the experience of children, young people and families who require specialist palliative care.

Priorities for development were identified from the findings of three independent evaluations carried out in the previous year – an evaluation of the EACH model of care, our approach to delivering psychological support and the neonatal care pathway. These evaluations included the involvement of service users, staff and external professionals.

The objectives of the three year programme informed the priorities for improvement for 2012/13.

To the best of my knowledge, the information reported in this Quality Account is accurate and a fair representation of the quality of health care services provided by EACH.

Graham Butland Chief Executive 21st May 2013

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Part 2. Priorities for Improvement for 2013/14 and Statements of Assurance from the Board

2.1 Priorities for Improvement for 2013/14

The priorities for 2013-14 have been informed by:  The three year care development programme objectives  Key areas of clinical risk  The successful bids to the Department of Health to fund capital improvements to care facilities, equipment and vehicles

The priorities cut across all three domains of quality- patient safety, clinical effectiveness and service user experience. Priority 1 Ensuring Quality and Consistency across EACH (clinical effectiveness & service user experience)

This priority will be achieved by:

- completing the root and branch review of all care processes from referral to discharge including link working, short breaks allocations and bookings procedures and implementation of these new approaches.

- implementing an evidence based and outcomes driven approach to delivering emotional health and wellbeing support for children and families. This includes agreeing a range of clinical tools to identify needs and goals and measure outcomes, agreement of interventions to meet all levels of need, revising job roles and responsibilities and associated competencies.

Progress will be monitored against the change plan milestones and reported to the EACH Management Executive. Oversight is provided by the clinical governance committee.

Priority 2. Ensure the specialist and increasingly complex care needs of children are met safely by competent staff (patient safety, clinical effectiveness & service user experience)

This priority will be progressed in two parts:

 Ensuring the continued competence of care staff as the complexity of care and the amount of end of life care increases.  Ensuring safe medicines management as the complexity of children’s medicines regimes increases and the requirements relating to medicines management continues to change. There will be a particular focus on IV therapy, management of cytotoxic and hazardous medicines and the handling of controlled drugs

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2.1 Ensuring Staff Competence

This will be achieved by:

- Identifying new areas of knowledge and skill required to care for a child at the point of referral and implementing required training for care commences - Implementing the revised three year rolling programme approach to clinical competencies for care staff.

Progress will be monitored by:

 The locality weekly referrals and complex care panels  Carrying out audits of competencies achievement, the core knowledge and skills programme, the revised induction programme and by seeking feedback from staff and managers as to the effectiveness of the new approaches

2.2 Ensuring safe medicines management in the hospice and in the community

This will be achieved by:

-Implementing the revised Controlled Drugs (CD) policy and Standard Operating Procedures (SOPs) and the redesigned CD register

- Implementing the cytotoxic and hazardous medicines management SOP and Intravenous therapies SOP

- Auditing compliance with the new medicines management SOPs introduced in 2012 13.

This will be monitored by the Pharmacy Strategic group and will include:

 An audit of the implementation of the new Controlled Drugs SOPs  Completing the annual Accountable Officer Controlled Drugs audit  Continued monitoring of medicines incidents and implementing any resulting changes to practice and shared learning from them.  An audit of medicines administration and reconciliation.

Priority 3 EACH model of clinical leadership is implemented and embedded into the culture and practice of EACH (patient safety, clinical effectiveness and service user experience)

This will be achieved by:

 Carrying out clinical leadership model road shows led by the EACH Care Management Team to engage with staff and the family forums to explain the model of leadership, what it means to individuals and how it will work in practice.

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 Recruiting a symptom management team service manager to provide additional time and focus for the nurse consultant to oversee and champion the implementation of the EACH approach to clinical leadership and clinical leadership activities  Care managers changing ways of working to work across 7 days to provide highly visible leadership in the care areas

This will be monitored by

 Evaluation of the road shows by staff  Care managers providing evidence of clinical leadership activities.  Evidence of staff involvement at all levels in clinical development activities including audit, reflective practice activities, review and development of clinical policies and SOPs

Priority 4 Improvements to EACH Hospice care facilities, equipment and care vehicles

This will be achieved by completing the refurbishment of the facilities at Milton and Quidenham and purchase and use of the fleet vehicles to provide care in the community and transport for families to access EACH care services.

A detailed project plan incorporating key milestones will provide the basis for monitoring of this priority. Work must be completed by the end of March 2014.

2.2 Statements of Assurance from the Board

The following are statements that all providers must include in their Quality Account. Many of these statements are not directly applicable to specialist palliative care providers, and therefore explanations if what these statements mean are also given.

2.2.1 Review of services

During 2012-13 EACH provided the following NHS services to children and families living in Norfolk, Suffolk, Cambridgeshire and North and West Essex:  Short breaks  End of life care  Symptom management  Family support for all family members before and into bereavement  Music therapy  Specialist play  Family Information service

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Care is delivered across a range of settings in line with the preferences of the family. This includes in the family home, hospice or hospital and in the wider community including reaching into residential schools.

End of life care and symptom management for the child including face to face care and access to telephone support is available at any time of the day or night throughout the year.

We have reviewed all the data available to us on the quality of care in these services.

The income generated by the NHS services reviewed in 2012/13 represents 100% of the total income generated from the provision of NHS services by EACH.

All services delivered by EACH are funded through a combination of fundraising activity and contracts with NHS and two County Councils. Funding received from statutory sources amounts to 30% of the total income. These arrangements mean that all services delivered by us are only partly funded by the NHS.

2.2.2 Participation in National Audits

During 2012/13, no national clinical audits and no national confidential enquiries covered NHS services provided by EACH. During the period EACH participated in no (0%) national clinical audits and no (0%) confidential enquiries of the national clinical audits and national confidential enquiries it was eligible to participate in. The national clinical audits and national confidential enquiries that EACH was eligible to participate in during 20112/13 are as follows: NONE

The national clinical audits and national confidential enquiries that EACH participated in and for which data collection was completed during 2012/13 are listed below alongside the number of cases submitted to each audit or enquiry as a percentage of the number of registered cases required by the terms of that audit or enquiry. EACH was not eligible in 2012/13 to participate in any national clinical audits or national confidential enquiries and therefore there is no information to submit.

The reports of no national clinical audits were reviewed by the provider in 21012/13 and EACH intends to take the following actions to improve the quality of healthcare provided. There were no national clinical audits relevant to the services provided by EACH therefore there are no actions to report.

2.2.3 Statement re participation in local clinical audits:

The reports of 6 clinical audits were reviewed by EACH in 2013/13.

The following clinical audits were completed during the report period and the following actions taken:

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 Resuscitation Audit Action taken: Whilst children had statements in place, some had not been reviewed within the last 12 months. These related to those children who are stable and well and continue to have full and active treatment therefore staff had not revisited them. Staff were reminded of the need to review all statements annually. Annual reviews of resuscitation status flag included in SystmOne care records system.

 Medicines and Healthcare Regulatory Agency audit of procedures Action taken: Safety of medicines summaries are not currently downloaded. The SOP 36 was amended to include these summaries in alert downloads and action to forward to Nurse Consultant each month for review and action as necessary

 EACH Involvement In Education Provision of Children and Young People Action taken: In the majority of cases, EACH knows about the current education of every active child or young person, and in many cases is actively involved in joint planning. However, it was inconsistently recorded and monitored about how EACH contributes to the education objectives of service users. This responsibility is to be included in the role of the EACH link worker.

 Medicines Management Audit Action taken: The medicines management policy and SOPs were revised and implemented. New SOPS relating to the medicines reconciliation and handling of symptom management boxes were developed and implemented. Nursing staff recruitment now includes a maths/ drugs calculation test

 Controlled drugs Audit– A Self Assessment Tool for Accountable Officers ( Help the Hospices National audit tool) Action taken: The role of the Accountable Officer was reviewed and amended to ensure compliance with regulations. CD SOPs relating to the handling of CDS have been written and are currently being introduced. The CD register is being redesigned.

 Infection control – cleaning and facilities inspections Fortnightly inspections are conducted jointly by locality Facilities Co-ordinators and Hospice Locality EACH Care Service Managers to review compliance with standards in infection control, cleanliness, food hygiene, facilities and equipment. Action taken included the purchase of a new waste disposal unit and additional cleaning equipment at Quidenham and the renovation of the bathroom at Milton

2.2.4 Participation in clinical research

The number of patients receiving NHS services provided or subcontracted by EACH in 2012/13 that were recruited during that period to participate in research approved by a Research Ethics Committee was nil.

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2.2.5 Use of the Commissioning for Quality Improvement and Innovation (CQUIN) payment framework

EACH income in 2012 -13 was not conditional on achieving quality improvement and innovation goals through the Commissioning for Quality and Innovation payment framework because EACH does not use any of the NHS Standard Contracts and is therefore not eligible to negotiate a CQUIN scheme.

2.2.6 What others say about us

Care Quality Commission

EACH is registered with the Care Quality Commission (CQC). EACH is required to have a registered manager at each of the three hospice sites to meet the requirements of its registration.

The CQC has not taken any enforcement action against the hospice during year 2012-13.

EACH has not participated in any special reviews or investigations by the CQC during 2012-13.

EACH is inspected annually by the CQC. All three hospice sites were inspected during the year 2012-13 and were found to be fully compliant with all of the required standards.

External Agencies and Health Professionals

EACH involved health professionals in the evaluation of the EACH True Colours symptom management service carried out in 2012 13. Whilst there was clear evidence of the benefits and effectiveness of the service, areas for improvement were identified relating to clarity of the TCT team roles and communication. This has resulted in the TCT nurses looking at ways to improve these areas including nurse being co-located in the some of the NHS community nursing teams, a jointly funded nurse post, revision of the information leaflet and meeting with professionals to explain the role and function of the team

Examples of the feedback are noted below:

“filled a critical gap in areas where provision has been extremely patchy”

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“Need to understand their role more and better communication with other professionals involved if they have contact with the family

Clarity of service - what can & can't be expected. Lead clinician should be clearly identified”.

EACH has received positive feedback from health professionals relating to our hospice teams and symptom management team:

A message received from a Consultant Palliative Care Paediatrician in Addenbrookes Hospital “Thanks to Rebecca and please pass on my thanks to the rest of the TCT team and the Treehouse team. I think Ashna’s end of life care was really excellent, thanks to you all.”

A letter was received from the Chair of Suffolk Child Death Overview Panel commending the high quality of multi-agency working between EACH and the Ipswich Paediatric Oncology Team, who “together, delivered an outstanding level of care to a child and her family throughout her illness and during her end of life”.

“Thank you ever so much for all your valuable work in caring for Anne and her family. You have been remarkable and the updates have been really useful.”1

“A huge thank you to all involved including Dr's (GP) and (GP), the TCT team and the nurses who stayed overnight to support family and the family support teams.”

“This palliative episode has been managed superbly well - a really good example of team work. Many thanks,”

“A huge thank you from the team at (GP) Surgery to all involved for the intense support and commitment that enabled and empowered the parents to keep Emma at home - I am sure in months and years to come keeping her at home with all the support in place will be remembered in a 'positive' sense and help them along the grieving process. “

2.2.7 Data Quality:

Good data quality and information management is essential to delivering high quality care. The Information governance policy and procedures provide the framework to ensure it is an integral part of EACH’s governance arrangements.

1 All names in quotes have been changed to protect anonymity

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NHS Number and General Medical Practice Code Validity

EACH did not submit records during 2012-13 to the Secondary Users Service for inclusion in the hospital episode statistics which are included in the latest published data. This is because EACH is not eligible to participate in this scheme.

Information Governance Toolkit Attainment levels

EACH submitted its annual information toolkit assessment in March 2013. EACH achieved 92 % compliance and has received confirmation from the Department of Health that the toolkit assessment has been reviewed and submission provides the assurances required.

2.2.8 Clinical Coding Error Rate

EACH was not subject to the Payment by Results clinical coding audit during 2012- 13 by the Audit Commission.

Part 3. Review of Quality Performance

EACH provided care to 494 children and young people (CYP) for the year 2012-13 and 547 families.

At 31st March 2013, EACH were providing face to face care and support to 963 service users. This included 385 children and young peoples with palliative care needs, 147 siblings, 306 parents and 125 other family members.

A summary of the service demographic information is noted in Table 1.

Out of the 73 children who died, 19 died at home, 13 in the hospices and 41 in hospital. Of these, EACH provided end of life care to 34 children in either the hospice or family home.

Table 1 Summary of EACH service demographics 2012-13 EACH Totals Numbers of CYP receiving services at March 31st 2013 385 Number of bereaved families being actively supported at March 31st 2013 110 Referrals 125 Deaths 73 CYP transferred out of EACH services2 74

2 Children and young people who have moved away from the catchment area, or who no longer meet the criteria to access services due to age or level of medical or nursing needs

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3.1Priorities for improvement 2012-13

As this is the first Quality Account, there are no priorities for improvement to report back on. However, the objectives for year 1 of the care development programme informed the priorities for improvement for EACH for 2012- 13 and these provide the basis for the review of quality performance for 2012-13.

1. Increasing the amount of care delivered (clinical effectiveness & service user experience)

More care was offered to more service users. This was as a result of recruiting additional staff agreed within the care development programme and reorganising ways of working to make more efficient use of staff time. This included including our approaches to the delivery of care education and training and how we arrange staff meetings.

2. Ensuring quality and consistency across EACH (clinical effectiveness & service user experience)

A root and branch review of all care processes for all elements of the care service from referral to discharge commenced. A new approach to managing referrals introduced in October 2012 resulted in reducing the time taken to complete non urgent referrals from a monthly average of 24 days between April and September to 7days from October to March 2013. The standard for completing referrals is 14 days (2 calendar weeks).

A review of the approach to delivering emotional health and wellbeing support commenced in October 2012. EACH is currently working with specialist children’s and palliative care psychologists from Great Ormond Street NHS Trust and Addenbrookes NHS Trust to define the new model which will:

 Ensure that universal, targeted and specialist support is available to ensure that all needs can be met  Ensure that interventions are evidence based and outcome driven and are underpinned by an approach which builds on an individual’s strengths and resilience  Support is individual to the needs and goals of the individual  Support is delivered by staff will relevant knowledge and skills

The scale of change involved in reviewing and making the improvements to the model of care and the associated care processes means that this will continue to provide a priority for improvement in 2013-14.

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3. Ensure the specialist and increasingly complex care needs of children are met safely by competent and well managed staff (patient safety, clinical effectiveness & service user experience)

3. a. Staff Knowledge and skills

All staff are expected to develop the knowledge and skills required to provide safe and effective care. Staff are required to complete annual mandatory training, the core knowledge and skills education programme and clinical competencies relevant to their role.

The induction and core knowledge and skills training programmes have been updated and implemented to ensure that staff continuously update their knowledge and skills with the latest evidence based practice and that they can respond to the increasingly complex needs of children cared for within EACH.

The Induction Training programme includes:

 End of Life Care  Play  Safeguarding  Infection Control  Moving and Handling  Record Keeping  Risk Management  Incident Reporting  Professional Boundaries  Looking After Yourself  Basic Communication Skills  Food Hygiene  Spirituality, Equality and Diversity  Medicines Management  Library and Information Services

The CSK Training programme includes:

 Person Centred Planning  End of Life Care  Symptom Control  Consent, Advocacy and Mental Capacity Act  Communication Skills  Introduction to Neonatal Care  Positive Handling  Spiritual Care  Looking After Yourself  Professional Boundaries  Emotional Health and Wellbeing

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Care staff were required to attend the following mandatory training session as appropriate to their role:

 Moving and Handling  Record Keeping  Safeguarding  Infection Control  Medicines Management  Food hygiene  Resuscitation

165 out of 173 (95%) care staff completed all of the required the mandatory training sessions for 2012-13.The remaining 8 had a maximum of 2 sessions outstanding. Reasons for not completing all sessions were absence from work due to sickness, compassionate leave or maternity leave.

Examples of the current clinical competencies are:  Enteral feeding  Oxygen management  Suction  Pain management  Seizure management  Administration of medicines  End of life care  Record keeping  Tracheostomy care  Personal care  Verification of death

Staff have continued to achieve the required clinical competencies. However, feedback from staff prompted a revision of how competency training is delivered resulting in a new 3 year rolling programme being developed for implementation during 2013-14

In additional to educations and training provide within EACH, staff also attend external education and training events, undertake courses of study, attend conferences, provide training to others and present at conferences.

Staff are also supported in delivering care and support, developing evidence based practice and in their learning by having access to the EACH Library and Information service. This service is also available to families and external professionals. The activity data summarised in table 2 below demonstrates good use of this valuable aspect of our organisation.

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Table 2 Library and Information Activity data 2012-13

EACH LIBRARY AND INFORMATION SERVICE 2011/12

Total library membership 502

Number of new library members 86

Enquiries & requests for information 535

Literature searches 90

Journal article/book requests from EACH library members supplied 241 by inter-library loan

Journal article/book requests to EACH library from NHS hospitals 30 supplied by inter-library loan

Downloading of electronic journal articles for EACH library members 303

Number of book loans and renewals 901

Training sessions on library resources 2

Informal induction sessions for new staff 18

Number of family information resources loaned & renewed (via care 262 team staff)

3.b. Ensuring safe management of medicines

Medicines management is a key clinical risk area for all health care organisations. To ensure continued safe medicines practice which remains compliant with regulatory requirements in the context of more children using EACH services having increasingly more complex medicines, EACH have implemented formal arrangements with Cambridgeshire Community Services NHS Trust (CCS) pharmacy services to enable access to the specialist advice and support.

A medicines audit was carried out, which showed that whilst management of medicines was satisfactory, there were inconsistencies in how the different localities interpreted the policy. Staff also found that the current policy format which also included procedural information resulting in it being difficult to find the information that they needed. A work plan for developing medicines practice has been developed and implemented to address the findings of the audit and to ensure practice is updated to ensure continued compliance with new regulations and best practice requirements. To date, the medicines policy has been revised and is now supported by 17 medicines management SOPs which enables staff to go straight to the SOP rather than trying to find the information in one large document. The

15 implementation of the new SOPs has been supported by a programme of training for staff led by the clinical educators.

3.c. Effective management and leadership

A new care management structure was agreed and implemented to ensure a strong platform from which EACH can continue to grow in size whilst ensuring that staff remain well supervised and supported and to give the capacity needed to develop as a regional provider of specialist palliative care for children, young people and their families.

A refreshed model of clinical leadership has been developed based on the NHS Leadership framework to ensure that clinical leadership is embedded and evident throughout the teams and at all levels and that staff have the time to review, reflect and proactively identify areas for improvement as well as celebrate what we do well. This will continue to be developed in 2013-14

3.2 Additional Quality Indicators we have chosen to measure

In the absence of a national minimum data set and nationally agreed indicators of quality for Children’s palliative care, EACH monitors:

 complaints and concerns (service user experience, clinical effectiveness)

 commendations (service user experience, clinical effectiveness)

 incidents and accidents (patient safety, service user experience, clinical effectiveness)

 cancellations of care by EACH (service user experience, clinical effectiveness)

 staff knowledge, skills and practice development including scholarly activity, involvement in clinical practice development activities and compliance with professional education and training requirements (patient safety, clinical effectiveness)

 policies and procedures to ensure that they remain evidence based and current (patient safety, clinical effectiveness)

3.2a Complaints and Concerns

All complaints and concerns whether they are made verbally or in writing are treated equally seriously and are fully investigated. Learning from complaints and concerns is shared with staff including required changes to practice.

Across EACH, there were 7 complaints or concerns made during the year of which 6 were upheld.

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Three of these related to care plans which not been followed fully, one related to a child’s piece of equipment which had been accidentally damaged by an EACH member of staff and which was replaced by EACH, one related to a concern that a medicines error had occurred and one related to a child not receiving the amount of community care that had been agreed.

The person raising the concern or complaint is advised of the investigation process, findings and resulting changes to care practice. All of the complaints and concerns reported during the reporting period were resolved locally to the satisfaction of the complainant and there has been no repeat of them.

3.2b Commendations

EACH received many commendations throughout the year from families, below are a few of the commendations we have received:

Bereaved parents – “Thank you so much for all you have done for us and our baby. Without your help and support, we wouldn’t have got by. It’s charities like you that keep people together and make a difference. Thank you so much…”

Bereaved parents – “Extra Special thanks to EACH Quidenham, and all donations made in memory of child will go to EACH”

“Loved the pampering session on mums evening, thankyou.”

A thank you card received from a family for making arrangements for them to participate in Dream night at Colchester Zoo “made us all feel very special and made for a magical evening”

Feedback from a mum who attended a dance workshop for the children, young people and their families, a joint event by Treehouse team and Dance East, ‘lovely to have this event where could all take part together

‘Just home from a 4 day stay at Milton - thank you, thank you, thank you. Really had the best break with our son we have ever had.x’

‘Fab visit this morning to Milton. sounds like an amazing place. Looking forward to my son being able to access hydrotherapy.’

‘Whilst my child was poorly we had the pleasure of working with the EACH hospice at Milton, where the amazing people there helped make her life as comfortable as possible. After her death they took her in to provide her with a comfortable bed, where we could visit at any time and supported us in planning her funeral. Even today, 14 months later, EACH still provide us with help and support, visiting us at our home and allowing us to meet other parents going through the same experience.’

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Facebook Message - "I just wanted to say thank you again to the lovely nurses and chefs at Quidenham. Me and my son have just been for our first stay from Sunday to Tuesday, my son had an amazing time being fussed over and played with and I had so much sleep I’m fully recharged! Thank you, it was just what we needed and I can’t say how much it has meant to us. We had fun, every one was fab, and as for the home made cake and dinners! what can I say!! Jim you are a star!! xxxxxx"

Facebook Message - "Thanks to everyone at Quidenham hospice for being a huge part of my life and thanks to all the support you have given myself and my family over the last 16 years. You’re all fantastic people to be with and have loved every moment while being involved with you. Thanks again and all the best for the future see you all soon :)"

Message of thanks received from a parent who is attending our support group for bereaved parents, hosted by locality Family Support Practitioner and team manager ….’Your wisdom to know when to speak and when to let us share is incredible, and the space that you have provided for us to come and talk, share, and meet with people who really understand is incredible. It is such a blessing to meet together, so thank you thank you thank you.

Letter received by a family support practitioner from a bereaved sibling for who we provided supportive care. ‘Part of the reason why I can now call myself Dr Sarah is that you really helped me when I needed it. I probably wouldn't have even made it to the clinical years without your support. So, thank you very very much’.

Verbal feedback to a Care Manager from Grandparents of one of children using the service; “. They expressed that being able to come and stay at the hospice was such a lovely experience for them and allowed them some time with their Grandson in such peaceful and calm surroundings. For them it was a little glimpse of some time that allowed them all to be together in a kind of normal place especially after spending hectic time in NICU. They now feel they have treasured memories of a special time spent with their Grandson and supported by staff who were there when needed but did not take over.”

3.2c Incidents and Accidents

EACH has a positive and proactive approach to incident reporting and management. Staff are encouraged to report all incidents within the context of a learning culture. Incidents are categorised by type and severity using a red, amber and green scoring approach. Incidents are scrutinised by relevant clinical practice groups, for example, infection control related incidents by the infection control group, medicines incidents by the medicines management group and service user information incidents by the information governance group. All other incidents and accidents are monitored by the locality based governance groups which include care and facilities staff and a service user.

Incidents which are scored as red are reported to both the management executive and clinical governance committee.

There were a total of 346 incidents /accidents representing a rate of 0.4 % against the total number of hours of care delivered. Three of these were scored as red. One of these related

18 to hospice equipment which has been replaced, one related to accessing and provision of symptom management support in a timely manner which has now been resolved and the other related to the unprofessional and fraudulent conduct of a member of staff. This latter incident was reported as a serious incident to NHS Norfolk and to the Nursing and Midwifery Council. The member of staff is no longer employed by EACH.

Examples of actions taken which have resulted from incidents have included:

 Purchase of new clinical scales and replacement beds across localities  Updates for staff on recording and checking medicines, tracheostomy settings, seizure charts and referrals policy  Training on emergency evacuation  Provision of emergency generator for dialysis machine  Agreement to have a direct dial line to call for emergency ambulances  Air conditioning installed in clinic room  Purchase of Flexi mort cooling unit to improve care of the body after death  Review of fire procedures undertaken with facilities and external professional  Family Information leaflet regarding sharing of information on Systmone revised  Resuscitation bag checklists revised  Purchase of new medicines fridge  Review of hospice security arrangements  The dependency of all children and young people is routinely assessed and skill mix/ staffing levels for care of child

3.2d Cancellations of Short breaks by EACH

Over the past year EACH have reduced the number of cancellations made as staff have been recruited into new and vacant posts. Cancellation rates at the Treehouse and Quidenham have remained constant throughout the year at 1.4% and 5.4% respectively. The rate at Milton dropped from 12% in the first six months to 2% in the final 6 months.

The number of sessions cancelled was 263 out of 5768. This equates to 4.6% of the total number of sessions provided. There are two key reasons for care being cancelled- an unexpected end of life care referral and staff sickness.

Wherever possible care is rearranged to suit the needs of the family.

3.2e Staff knowledge, skills and practice development

The evidence of activities carried out by staff demonstrates EACH’s commitment to this aspect of quality assurance. A summary of activities is provided in the sections below:

3.2e (i) EACH Clinical Practice Development Groups

Medicines Management Group Health and Safety Committee SystmOne Clinical Records Development Group

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Information Governance Group Information Asset Owners Group Music Therapists Development Group Moving and Handling Trainers Group Physiotherapist/ Occupational Therapist Development Group

Positive Handling -Team Teach Trainers Group Young Persons care development action group

3.2e (ii) External Practice Development groups

Attendance and participation by care staff in the following external groups was undertaken: The East Anglian Managed Clinical Network ( Norfolk, Suffolk, Cambridgeshire and North and West Essex)

The East of England Children’s Palliative Care Network and county based strategic groups

Music Therapy in Palliative Care Forum

National Institute for Health Research Funding Group

Royal College of Nursing Palliative Care Group

Together for Short Lives (TfSL) Leaders of Care

TfSL Infection Control Special Interest Group

TfSL Workforce Development Group

TfSL Practice and Service Development Advisory Council

TfSL Research Strategy Group

TfSL Trustee

3.2. e (iii) Scholarly activity  Providing 24/7 Care: Towards a Paradigm Shift? 6th International Cardiff Conference on Paediatric Palliative Care 11-13 July 2012 "Science, meaning and morality: the palliative package?” Presentation, Dr Linda Maynard  The verification of expected death in childhood Guidance for children’s palliative care services 6th International Cardiff Conference on Paediatric Palliative Care 11-13 July 2012. Presentation Dr Linda Maynard (co-presented with Helen Bennett, TfSL)  Haemodialysis in children’s hospices 6th International Cardiff Conference on Paediatric Palliative Care 11-13 July 2012. Poster presentation, Julia Shirtliffe

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 The verification of expected death in childhood Guidance for children’s palliative care services Together for Short Lives, 2012 Report Dr Linda Maynard (co-author with Helen Bennett, TfSL)  Being There For Children and Families: A 24/7 Symptom Management Project 9th Palliative Care Congress. The Sage, Gateshead, UK, 14–16 March 2012. Poster presentation Dr Linda Maynard, Dr Janet Leeson  Development and Implementation of Psychological Care in a Children’s Hospice Jo Wray, Bruce Lindsay, Kenda Crozier, Lauren Andrews and Janet Leeson 9th Palliative Care Congress. The Sage, Gateshead, UK, 14–16 March 2012. Poster presentation  A Design for Life, Together for Short Lives Conference 9-10 October 2012 Haemodialysis in children’s hospices. Presentation Julia Shirtliffe  Royal College of Nursing Competencies Palliative Care for Children and Young People booklet, November 2012, Julia Shirtliffe (co-author)  Royal College of Nursing Bulletin NICU Pathway December 2012, Julia Shirtliffe 3.2e (iv) Higher Education courses

The following Higher Education courses were completed by individual staff:  Advanced Clinical Assessment skills MSc module  Clinical Assessment Skills for Health Practitioners Level 6  Research in Health and Social Care MSc module  Independent & Supplementary Prescribing Post-Graduate Diploma  Clinical Assessment Skills for Health Practitioners Level 6  Masters Thesis, Children’s Advanced Nurse Practitioner Pathway  Certificate to Teach in the Lifelong Learning Sector  Working Systemically with Families  Family and Systemic Psychotherapy MSc module  Every Child Matters BSc module  Introduction to Palliative Care of Children and Young People BSc (3 staff)  Mentor Preparation BSc module

3.2e (v) Student placements

EACH provided placements for nursing (child) students from Anglia Ruskin University (5 students), University Campus Suffolk (10 students) and University East Anglia (5 students). A placement with EACH was also completed by a Music Therapy student.

3.2e (vi) Commissioned Training

Training was provided by EACH to the following:

 Cambridge University Medical Students  Cambridge University Paediatric Society  University of East Anglia post registration nurses, medical students, student nurses and student teachers  Neonatal Intensive Care Unit students  Norwich City College Child Care students

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3.2f Policies and procedures

All policies and procedures are reviewed at least every three years. There are procedures in place to identify when polices require review. All clinical policies and procedures are current and those due for review have been updated in line with latest regulatory or best practice requirements.

3.3 How children and families are involved in EACH and what they say about the service they received

Examples of feedback received from families are noted earlier in section 3.2b. Mechanisms to involve families and received feedback in a more systematic way are explained below.

3.3a Child and Family Views

Views are captured in a variety of ways:

 On an individual basis as part of care reviews

 Family Survey

 Evaluation of family events and group activities

 Comments cards via the website or the Family Corner newsletter

 The locality based Family Forums

Purpose specific views are also sought as required. For example, families were asked for their views about what could be improved at the hospices to inform the capital funding bids submitted to the Department of Health

3.3 b Annual Family Satisfaction Survey

The date for the annual service was changed this year from December to March at the request of the family forum. Surveys are sent out to all families using EACH services including bereaved families. Collation and analysis of data is currently in progress and will be used to inform future service developments and priorities.

3.3c Evaluation of EACH True Colours Symptom Management Service

Twenty six families who had used the True Colours Symptom Management Team Service across the EACH catchment area in Cambridgeshire, North and West Essex, Norfolk and Suffolk since October 2010 participated in the evaluation.

3.3d The EACH Family Forums

The three locality Family Forums met three times during the report period. It provides the opportunity to receive feedback from families and also to test out service developments and proposed changes to ways of working.

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Some of the areas the forums have been involved with this year were:

 Agreeing the themes and outline content for the satisfaction survey

 Feeding back the care proposal to develop a ‘person centred approach’ to caring for young people

 Reviewing the family section content and ease of use of the new EACH website

 Reviewing the new EACH family story DVD to be used for marketing purposes

 Prioritising items to be included in the DH capital funding bid application to improve facilities at the hospices

The family forum also requested that care staff photos be included in the Family Forum newsletter. This has been done and has received very positive feedback.

3.4 Involving EACH staff

EACH promotes an ‘open door’ culture of listening and responding to staff feedback about all the way we work service developments and organisational developments.

In addition to a staff forum, staff are encouraged to feedback their views via team meetings, involvement in practice development groups and by being involved in service evaluations. Staff were involved in the evaluation of the EACH True Colours symptom management service.

Two examples of where staff have raised issues which has resulted in changes to practice includes having protected times to carry out link worker/ case management duties and a revised approach to the competency training.

3.5 Statements from Lead Commissioners, Healthwatch and Overview and Scrutiny Committees.

EACH provides services across Norfolk, Suffolk, Cambridgeshire and North and West Essex. This Quality Account has been sent to Clinical Commissioning groups, Healthwatch and Overview and Scrutiny Committees in the above counties to provide the opportunity for comment and a statement. The list of those who were sent a copy of the Account are tabled in Appendix 1.

Responses are detailed below:

3.5.1 Norfolk

Healthwatch Norfolk

Healthwatch Norfolk can confirm that it has reviewed the Quality Accounts for 2012- 13. However, due to Healthwatch Norfolk only becoming operational from 1 April 2013 we do not believe it is appropriate for us to provide any detailed observations at this time

23 but we will be working with East Anglian Children’s Hospice and therefore will provide detailed and constructive comments on the Quality Accounts for 2013-14.

Chris MacDonald Healthwatch Norfolk Operations Manager 30th May 2013

NHS Norfolk and Waveney

NHS Anglia CSU is one of the successor organisations to NHS Norfolk & Waveney PCT, who were EACH’s main commissioner for 2012/13. We have reviewed EACH’s Quality Account with those members of staff who work with EACH and we feel that it is a complete and accurate account of EACH’s activities during 2012/13, with areas for improvement identified. EACH offers a much valued service to Norfolk families and we look forward to continued partnership working. Sally Child Head of Child Health & Maternity Commissioning NHS Anglia CSU On behalf of NHS Norfolk & Waveney 21st June 2013

Norfolk Overview and Scrutiny Committee

The Norfolk Health Overview and Scrutiny Committee has decided not to comment on any of the Norfolk healthcare providers' Quality Accounts for 2012-13 and would like to stress that this should in no way be taken as a negative comment. Maureen Orr Scrutiny Support Manager (Health) Norfolk County Council 01603 228912 5th June 2013 3.5.2 Cambridgeshire and Peterborough

Healthwatch Cambridgeshire Thank you for sending us EACH's Quality Account. Unfortunately, as a brand new organisation Healthwatch Cambridgeshire are not in a position to comment on Quality Accounts this year.

Please do send us these in future however we will be delighted to contribute.

Sandie Smith Chief Executive Officer Healthwatch Cambridgeshire 29th May 2013

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Cambridgeshire and Peterborough CCG

This looks good and set in the right direction. I would like included as a future target: - Section 3.2 and 2.2.6 working with other agencies - ‘'developing in collaboration with partners responsive packages of support to identified need for best use of resources, integrated working and in supporting the family to stay together. - Section 3.2d - "working with other health and local authority provision to plan together and enable access to residential short break and reduce further cancellations" - Section 3.3 – “working with Pinpoint and other parent engagement forums to strengthen our participation skills and strategy for on going engagement with families in service design, improvement and evaluation. Evidence will be collated to demonstrate how views were listened to and acted upon”. Eva Alexandratou Head of Children's Joint Commissioning 28th May 2013

Cambridgeshire Overview and Scrutiny Committee No response was received.

3.5.3 Suffolk

Healthwatch Suffolk

This is the first year in which Hospices have been asked to submit quality Accounts, so they are reporting with no preceding Quality Account, for reference. However the EACH Quality Account does contain a set of priorities for the year 2012-13. The Quality Account received from the EACH group of Hospices is a clear well prepared document. The Hospice’s priorities for the current year are well set out and understandable they are derived from the objectives of the ‘care development programme’. The priorities as set out in the document have resulted in an improvement to the service offered to their service users. Additional staff have been recruited, improvements in staff training have been undertaken, they have reviewed and changed their current processes for providing care across the services. As a result the time taken to complete a non-urgent referral has reduced from some 24 days to an average of 7 days. Specialist palliative and psychological support is now available to meet the individual needs of users. EACH has improved their core skills training programme.

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The priorities for the next year (2013-14) are well set out and fit well with their continued priorities for improvement. EACH has taken account of comments from service users most of which are positive. Healthwatch Suffolk looks forward to working with EACH in the coming years as they continue to improve their service to their users. David Evans Chair – Healthwatch Suffolk 3rd June 2013

Ipswich and East CCG and West Suffolk

Ipswich and East Suffolk Clinical Commissioning Group and West Suffolk Clinical Commissioning Group, as the commissioning organisations for EACH, confirm that the Trust has consulted and invited comment regarding the Quality Account for 2012/2013. This has occurred within the agreed timeframe and the CCGs’ are satisfied that the Quality Account incorporates all the mandated elements required.

The CCGs’ have reviewed the Quality Account data to assess reliability and validity and to the best of our knowledge consider that the data is accurate. The information contained within the Quality Account is reflective of both the challenges and achievements within the Trust over the previous 12 month period. The priorities identified within the account for the year ahead reflect and support local priorities.

Ipswich and East Suffolk Clinical Commissioning Group and West Suffolk Clinical Commissioning Group, are currently working with clinicians and manager from the Trust and with local service users to continue to improve services to ensure quality, safety, clinical effectiveness and good patient/care experience is delivered across the organisation.

This Quality Account demonstrates the commitment of the Trust to improve services. The Clinical Commissioning Groups endorse the publication of this account.

Susan Barker Head of Clinical Quality and Patient Experience 31st May 2013

Suffolk Overview and Scrutiny Committee

Due to the County Council elections this year, the Suffolk Health Scrutiny Committee was unable to meet to discuss the content of this year’s Quality Accounts during the timescales set by the Department of Health. In previous years, the Committee has not commented individually on providers Quality Accounts, as it has taken the view that it would be appropriate for Suffolk LINk to consider the documents and comment accordingly. The Committee is aware that the dedicated Quality Accounts Working Group established by Suffolk LINk has continued its work on Quality Accounts for 2012/13 and will be providing

26 its views to the Healthwatch Board for formal ratification and submission to Suffolk providers.

The Committee has, in the main, been happy with the engagement of local healthcare providers in the work of the Committee over the past year, and is keen that these relationships continue to develop to ensure the best possible health services for the people of Suffolk. Consideration will be given to discussions with providers about how they are performing against their agreed targets, and potential scrutiny issues raised, when the Committee reconvenes in summer 2013.

Theresa Harden Business Manager, Democratic Services, Suffolk County Council

3.5.4 Essex

There were no responses received from Healthwatch, the Clinical Commissioning Groups, or the Overview and Scrutiny Committee in Essex.

END

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Appendix 1

COUNTY Clinical HEALTHWATCH HWB SCRUTINY Commissioning Group NORFOLK (including Sally Child Christine MacDonald Linda Bainton GY&W)

[email protected] christine.macdonald@he [email protected]

althwatchnorfolk.co.uk v.uk

01603 257000 01603 813904 01603 223024 Lakeside 400, Rowan House, 28, Norfolk County Council Old Chapel Way, Queens Road, Broadland Business Hethersett, Norwich, Park, Norwich, NR9 3DB Norfolk NR7 0WG

SUFFOLK Gena Nicholls, Michael Ogden, Lead Sue Morgan Children's Complex Officer Case Manager gena.nicholls@suffolk. michael.ogden@healthw [email protected].

nhs.uk atchsuffolk.co.uk uk Tel 01473 770142 01449 703949 01473 264512 Rushbrook House, 12-13 Norfolk House, Endeavour House, Paper Mill Lane, Williamsport Way, 8 Russell Road, Bramford, Needham Market, Ipswich, Ipswich, Suffolk, IP1 2BX IP8 4DE Ip6 8RW

CAMBS Eva Alexandratou, Sandie Smith Liz Robin Head of Children's Joint Commissioning

eva.alexandratou@ca sandie.smith@healthwat liz.robin@cambridgeshir

mbridgeshire.gov.uk chcambridgeshire.co.uk e.gov.uk

01223 699146 01480 377625 01223 703259

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Cambridgeshire Scott House, Cambs Public Health Children and Young 5 George Street, People's Services Huntingdon, Cambridgeshire and Cambs, Peterborough CCG PE29 3AD

PETERBOR As for Peterborough not yet Alexander Daynes OUGH Cambridgeshire underway Peterborough City Council 01733 452447 alexander.daynes@peter

borough.gov.uk

ESSEX Stewart McArthur Thomas Nutt (CEO) Colin Ismay

Children’s Commissioner

stewart.mcArthur@sw thomasnutt@healthwatc [email protected]

essex.nhsk h.org.uk k

01376 572829 01245 430396 Building 4 RCCE House, Room C328 County Spencer Close Threshelfords Business Hall, Chelmsford, St. Margaret’s Hospital Park, Essex, The Plain Inworth Road, CM1 1LX Epping Feering, Essex. Essex, CM16 6TN CO5 9SE

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