Report of the Cheshire and Merseyside Renal Transport Action Learning Set

Recommendations for the provision of a patient centred renal transport service

DETAILED SUPPORTING INFORMATION SEPTEMBER 2006

Cheshire and Merseyside

CONTENTS CONTENTS Foreword

1. Map of Cheshire and Merseyside indicating dialysis units

2. Cheshire and Merseyside Renal Transport Action Learning Set

3. What is Action Learning?

4. Listening and Learning - key themes identified through the Learning Set

4.1 What does a good transport service look like? 4.2 Summary of the Stakeholder Listening Event 4.3 Patient and Carer Quotes and Comments 4.4 Renal Patient Interviews 4.5 Patient Case Studies

5. Key issues in renal transport

6. The Belfast Experience

7. Ambulance Trust Meeting

8. Survey of English Ambulance Trusts

9. National Action Learning Conference (January 2006) - Sharing ideas / Exploring views

10. Current profile of renal transport across Cheshire and Merseyside

11. The development of renal services across Cheshire and Merseyside

12. Renal transport and the use of information and communication technology

13. Hospital Travel Costs Scheme and other supporting information

14. Access to renal services - Mersey Regional Ambulance Service

15. Stakeholder Listening Event Newsletter

16. Example Service Specifications and Contracts

16.1 Greater Manchester 16.2 Cheshire & Merseyside 16.3 West Midlands 16.4 Belfast

17. What determines geographical variation in rates of acceptance onto renal replacement therapy in England? Dr Paul Roderick et al (1999)

18. Useful References

BACK FORWARD CONTENTS 2 FOREWORD

In order to provide clear, supporting evidence for the recommendations of the Learning Set, a wide range of methods were used to gain views and share thinking and this document outlines the supporting information gathered through this process.

It is recognised that there may be many other examples of good practice nationally that are not referenced here but it is hoped that the main themes of providing a good patient focussed transport system have been captured in this work.

What has become clear throughout the Learning Set’s work is the commonality of themes that have emerged not only in renal transport issues but in the wider Patient Transport Services (PTS) context. Many of the national policy and guidance documents identify a small set of core issues including increasing the status of PTS, ensuring timely, clean and reliable transport is available, reducing travelling times and distances and becoming more patient centred rather than being a predominantly finance led service - in summary modernising patient transport services.

The Learning Set’s work is therefore consistent with national policy and guidance and its recommendations will also have relevance for services other than renal.

It is hoped that this supporting information can be regularly updated in order to share good practice across the country, to support local transport service developments and move towards a nationally consistent approach to renal transport.

BACK FORWARD CONTENTS 3 1. Map of Cheshire and Merseyside indicating dialysis units

BACK FORWARD CONTENTS 4 2. Cheshire and Merseyside Renal Transport Action Learning Set

BACK FORWARD CONTENTS 5 Why was the Renal Transport Action Learning Set established?

It is known that the provision of streamlined renal transport services presents significant difficulties and that this is not just a local concern but is also highlighted at a national level and across a number of patient groups who rely upon Patient Transport Services (PTS). The Department of Health (DOH) wanted to address these concerns and established two action learning sets to explore the issues in renal transport. These sets were in Cheshire and Merseyside and County Durham and Tees Valley and were established for 12 months to undertake this work.

The DOH wanted to tackle these difficult issues in a new way. Years of different groups working to try and resolve transport issues in a more traditional way had produced pockets of good practice but no overall consistent approach. It was therefore proposed that Action Learning be used to develop a national framework within which local transport solutions could be developed.

The Cheshire and Merseyside Renal Transport Action Learning Set (RTALS) was established in January 2005 with the remit of making recommendations regarding future renal transport both across Cheshire and Merseyside but also to share this learning and experience on a national basis. The County Durham and Tees Valley Transport Learning Set was also established to address similar issues within the North East.

Purpose, Scope and Membership of the Renal Transport Action Learning Set

The provision of patient centred renal transport had already been identified as a priority by the Cheshire and Merseyside Renal Network and once notified of being a Learning Set, there was a great deal of enthusiasm to work in this area. A subgroup of the Cheshire and Merseyside Renal Strategy Group (RSG) had already surveyed renal patients to seek their views on current transport arrangements in January 2004 and this had highlighted a number of significant concerns including delays in transport, multiple pick ups and sharing journeys with a number of patients. The conclusions of this audit highlighted a need for improved communication, plurality of service provision, explicit standards for travelling times and a proposal to pilot a dedicated renal transport service.

The Cheshire and Merseyside Renal Strategy Group produced a 5 year Renal and Transplantation Strategic Framework in June 2004 in which renal transport was highlighted as a concern. It also outlined a standard of 30 minutes for a single patient journey time to and from their dialysis unit based upon national good practice but it was recognised that many patients take considerably longer than this due to the need to pick up other patients on the way and the knock on effect of delays in transport.

In commencing this piece of work, it was therefore felt important to be clear on the scope and purpose of the Learning Set in order to have a common understanding across a wide range of stakeholders and also to measure success at the end of the process.

BACK FORWARD CONTENTS 6 Purpose

The purpose of the Learning Set was to consider all relevant issues and to seek views from a range of key stakeholders in making recommendations for the provision of effective patient centred transport for renal patients as part of implementing the Renal NSF.

Scope

The scope of the Learning Set was to address the following:

• Rural and urban transport issues across all Cheshire and Merseyside PCTs including Eastern and Central Cheshire PCTs who receive the majority of their renal care from outside Cheshire and Merseyside. • Issues relating to cross border flows into other areas including North Wales, Staffordshire, Lancashire and Greater Manchester. • Transport issues facing all renal patients but principally focussed on hospital haemodialysis patients. • The development of views around the emergency transport and transfer of renal patients. • Consideration of appropriate transport for patients with different clinical and mobility needs. • Related issues such as patient car parking and charges for transport.

Membership of the Learning Set

The membership of the Learning Set included renal managers, renal clinicians, ambulance managers, specialist and PCT commissioners and patient representation from the National Kidney Federation. During the lifetime of the Learning Set, some members left and others joined due to changing job roles. The Learning Set met on a monthly basis for half a day and focussed on both action and learning within its work programme.

Name Title Organisation

Simon Banks Specialised Commissioning Manager & Lead Commissioner for Cheshire and Merseyside Specialised Ambulance Services Services Commissioning Team

Dennis Crane MBE North Regional Advocacy Officer National Kidney Federation Andy Hickson Assistant Director of Operations (PTS) Mersey Regional Ambulance NHS Trust Sarah Reynolds Commissioning and Service Improvement Manager Southport and Formby PCT Jenny Scott Head of Specialised Commissioning & Lead Commissioner Cheshire and Merseyside Specialised (Facilitator) for Renal Services Services Commissioning Team

Marcella Sherry Renal and Transplant Directorate Manager Royal Liverpool and Broadgreen University Hospitals NHS Trust

Joan Taylor Renal Business Support Manager Wirral Hospitals NHS Trust

BACK FORWARD CONTENTS 7 Pictures from our year as a Learning Set

Our first Learning Set Meeting (January 2005) As a Learning Set, we met on a monthly basis away from all our places of work at the LACE Centre in Liverpool which provided quiet and relaxing surroundings for us to concentrate on the key issues. We found meeting off site to be better as we were not distracted with e mails and interruptions and the unfamiliar surroundings helped us to focus on the issues.

Listening Event (May 2005) We wanted to hear from key stakeholders regarding their views on renal transport but particularly renal patients and carers and we held a Stakeholder Listening Event in May 2005 to hear about the issues of concern that we should be addressing in our work. The event was held on a Sunday to enable as many patients to attend as possible and the morning comprised both presentations and group work.

We set up a video diary room as a new way of gathering views from people who attended. We also used it as a learning diary for our set and this was replicated at the Sharing Event later on. A short DVD of comments and issues was produced which helped in formulating our recommendations.

Survey of Ambulance Trust and Ambulance Meeting (September 2005) We wanted to know whether ambulance trusts across England had a consistent approach to key issues such as charging for transport, eligibility criteria and renal specific contracts. We therefore wrote to them all and produced a summary document (see section 8).

BACK FORWARD CONTENTS 8 Stakeholder Sharing Event (February 2006) We had committed to taking our recommendations back to our stakeholders and held a Sharing Event in February 2006. This meeting was held mid week and we found that not as many patients attended this but nevertheless, we were able to outline our key recommendations and gained some valuable feedback from the people who attended, enabling us to finalise our work.

Howard Naylor, Facilitator from the County Durham and Tees Valley Transport Learning Set attended the Sharing Event and spoke of the parallel work being undertaken in the North East. There was then the opportunity to discuss how we would report our work and share joint recommendations.

BACK FORWARD CONTENTS 9 3. What is Action Learning?

BACK FORWARD CONTENTS 10 Overview

When the DOH established the Action Learning Sets, there was a clear sense that a different approach to solving these difficult or complex issues was required. Action Learning is a different way of tackling issues that are complex and where there is no obvious answer. This approach has enabled a freer thinking process to evolve and a shared ownership of the responsibility for making change happen.

What is Action Learning?

Reg Revans (1907 - 2003) first came up with the term ‘Action Learning’ to help link thinking and doing. There are 4 core beliefs of Action Learning:

• Learning starts from not knowing. • People who take responsibility in a situation, have the best chance of taking actions which will make a difference. • Learning involves both programmed knowledge and questioning insight. • Learning should be greater than the rate of change.

Reg Revans noted.

“There is no learning without action and no sober and deliberate action without learning”

An Action Learning Set is a small group of people who are all interested in solving a difficult issue and meet regularly to report on progress and to share learning. The Learning Set meetings are quite different from standard board meetings in that everyone comes to the meeting as an equal, every set member is given the opportunity to share their thoughts and views and to influence the final solutions and no one person is charged with taking action - it is a shared responsibility.

‘It is a living human process which involves both thinking and doing and which can flourish when people come together to make progress on a common purpose’ (DIY Handbook for Action Learners: Chivers and Pedlar).

The process of Action Learning is more reflective than traditional ways of working and can be described as a cycle of discussion, planning, action and reflection.

The Cheshire and Merseyside Learning Set captured their learning throughout the year. As a part of this, each Learning Set member considered 4 key questions and a summary of responses is shown overleaf:

BACK FORWARD CONTENTS 11 Question Summary of response

What do you feel action • Space to think with regular time set aside. learning adds to the p rocess of resolving • Open to new ideas. difficult or complex • More reflective approach which is involving as a process. issues? • Open and honest challenge of existing assumptions and views. • The process is as important as the outcome as it builds foundations of relationships. • It can be best used in tackling difficult issues where there is no obvious answer. • Everyone comes equal to the process and no one person has to solve this on their own. • Thinking creatively and considering innovative solutions is possible. • Pooling of knowledge. • Systematic and organic process.

Would you recommend • Yes but there needs to be recognition that it can be time consuming. action learning to others • It is like growing a flower from a seed - it requires time and nurturing but the final and why? result has long term sustainability. • Where you have a very practical problem like transport, there needs to be a balance between learning and taking practical action. • It gives you space and time away from the day job. • The trust that builds up in the Learning Set facilitates real action. • You are a person in the Learning Set not just a representative of an organisation. • It is very different from any other meetings - a real pleasure to be part of. • It enables creation of new paradigms - tested out in a safe environment.

What would you advise • High level senior commitment must be obtained in order to take action. future sets to consider • Need to communicate progress to keep wider representatives informed. when setting themselves up? • Stakeholder events are good. • Good to have written information to share. • Need to link it in with mainstream work. • Need to recognise that members will come and go - agree how this will be handled. • What outputs are expected - how will the success of the LS be judged? • Need good spread of representatives and commitment to attend meetings and take personal action. • You sometimes need to be firm if not everyone is participating.

What have you personally • I do not need to be in control all the time. I can relax as everyone in the group is learnt from being part of taking their share of the responsibility. this set? • Support from people you trust who are all equally as committed to taking action is very important. • Success is a journey not a destination. • By giving respect and working in an open and honest way, great things can be achieved. • Ignorance is a good starting point. • Knowledge evolves through exploration, inquiry and analysis. • My confidence has grown. • I enjoy this so much, we don’t realise how much we are achieving.

BACK FORWARD CONTENTS 12 One Learning Set member described their experience as follows:

I must confess that I was somewhat sceptical about the concept of action learning when I was asked to be part of the Cheshire and Merseyside Renal Transport Action Learning Set (RTALS). My preconceptions of action learning sets were that they talked about issues but did not seem to deliver tangible results. In my worldview they were too fluid and lacked structure, direction and the key deliverables - the comfort blankets of certainty that I was used to. This said I was prepared for my prejudices to be challenged, how wrong could I be? As it transpired I was proved to be very wrong, very wrong indeed.

Now, don’t get me wrong, I am not someone who has a closed mind. I am open to most new ways of doing things and to new concepts and challenges. Indeed, I would say that I was very much a reflective individual in both my professional and personal life. This said, action learning was challenge to me simply because it was a new way of approaching an issue for someone working in an environment of project teams, key targets, deliverables and structured approaches to problem solving. In many ways action learning has been a liberating experience from this world.

Action learning allowed my colleagues and I the opportunity to create time and space to address a complex, systemic issue in an open and adult way. In joining the learning set we shed our organisational skins, left our preconceptions behind, or at least shared them openly, and started to objectively, but not dispassionately, address the common, complex problem of renal transport. Indeed, our learning set was fired with passion, a passion to succeed, to meet our shared goals and to make a difference for people who needed transport to access renal care.

From the very first meeting of the learning set we bonded as people. We started that meeting and every meeting thereafter with an icebreaker in which we shared what was going on in our professional and personal lives. This made the action learning process even more human as we laughed (a lot) and cried (a little) together, shared our achievements and frustrations, our hopes and fears and anything else that was pleasing or troubling us that day. Very quickly a collection of individuals became a tight knit team that provided support and reassurance to one another in meetings and outside. We also all probably gained several pounds in weight with the amount of cakes and pastries we went through together.

So, what did I gain from action learning? Well, I spent twelve months working with some remarkable people for whom I have developed tremendous respect and affection. I have been proved wrong in that I found action learning to be very goal oriented with a clear destination. What action learning allowed us to do was to take the train that stopped at every station, get out and have a look around, consider what we had seen and heard and get on the train again. We could have took the express train but the journey would have not as been so fulfilling and the outcomes all the poorer.

The Learning Set found a very helpful handbook called ‘DIY handbook for Action Learners’ produced by Mandy Chivers and Mike Pedlar which gives an excellent overview of Action Learning in a very practical and readable format. For further information on this, please contact Mandy Chivers at [email protected]

BACK FORWARD CONTENTS 13 4. Listening and Learning – key themes identified through the Learning Set

BACK FORWARD CONTENTS 14 Overview

The Learning Set had set time to consider renal transport issues but also needed to hear from a range of stakeholders with an interest in transport.

4.1 What does a good transport service look like? In thinking through what would be required in a good transport system, the Learning Set outlined their vision which is described below.

A good renal transport service would....

1. Be patient centred, identifying patient issues and reducing stress for both patients and carers, enabling them to have minimal disruption to their lives. 2. Be consistent and with good continuity even when changes happened such as a hospital inpatient episode or patient holidays. 3. Have good communication between all concerned in providing that service and with the patient / carer so that they too are aware of any problems. 4. Have technology available to support communication and efficient use of the vehicles and staff available. 5. Have short waiting times for pick ups and for journey lengths of no more than 30 minutes each way for the majority of patients. 6. Offer options in a transport menu for patients depending upon their personal circumstances and appropriate to their clinical condition. 7. Be able to respond flexibly to changes and would have well rehearsed back up plans. 8. Provide a safe, well equipped service with appropriately trained staff who could handle difficulties should they arise. 9. Enable patients and their carers to park at their dialysis unit free of charge. 10. Be clearly specified with clear understanding of roles and responsibilities. This would be backed up with appropriate processes and documentation. 11. Have governance arrangements in place with opportunities for feedback and a learning approach to patient complaints.

The views of a range of stakeholders were obtained in a variety of ways which are described:

4.2 Summary of the Stakeholder Listening Event - May 2005 The Learning Set held a ‘Listening Event’ on Sunday 22nd May 2005 at the LACE Centre in Liverpool. Over 40 people attended the event and after a series of short presentations, there followed a lively debate about the key issues to be addressed in providing good transport for all renal patients. After the presentations, there was a time of group discussion to capture people thoughts and views. Three questions were asked at each table:

1. What makes a good transport service 2. What practical things could help 3. Any other comments BACK FORWARD CONTENTS 15 Each group had 2 members of the Learning Set and all the comments made were captured on flip charts. The points below summarise the main themes to come out of the discussion groups. In addition to these, some people who could not attend the event had taken the time to send their views in on a comments sheet and these have also been captured in the points below.

1. The need to have a patient centred transport service which is flexible and reliable. 2. The importance of communication both in terms of written information for patients and carers to understand the service and the benefits to which they are entitled but also on the day, should there be delays in the transport, being able to keep all people from the patient through to the driver and nursing staff informed. 3. The transport service should be clean, safe and appropriate for the patients needs. Some patients require ambulance transport whilst others may be suitable for taxis or other forms of transport. 4. Some transport providers may not be so familiar with the needs of renal patients and perhaps additional support, information and training would be helpful. 5. The journey time should be kept to a minimum by grouping patients into geographical areas and staggering dialysis start times. 6. Everyone involved in the transport service and the patient / carer have responsibilities and there should be greater clarity about expectations on each individual. 7. Some patients have carers who are able to provide transport and they should receive appropriate financial support to enable them to continue to provide this service. 8. Renal units should have dedicated and free parking so that renal patients and carers can easily park. 9. The use of new technology to aid communication and route finding should be used. 10. Renal Transport should be coordinated and should be separated out from general hospital transport.

A newsletter outlining the key themes from the Listening Event was produced and widely circulated (see section 15).

4.3 Patient and Carer Quotes and Comments

Some quotes and comments from patients and carers received throughout the Learning Set’s work are outlined below: “I get up at 6.00 a.m Monday, Wednesday, Friday. Waiting for transport is quite stressful as I never know by whom or at what time I am being picked up” “The drivers are very nice but the seats on the buses are always full of hairs and bits. All ambulances could be cleaner” “I am utterly disappointed at the transport situation... the times of pick up and returns are utterly ridiculous” “If the hospital could allocate parking spaces specifically for renal patients, I would be prepared to use my own car which would save the NHS in taxi charges. There are other renal patients who would also use their own transport if they could be guaranteed a parking space” BACK FORWARD CONTENTS 16 “Diabetic / renal / disabled patients are frail, weak and sometimes not very well ‘padded’. An ambulance is sometimes no better than a van with seats. The suspension is hard and very uncomfortable and noisy”

“ I would like to mention that I and some other patients have been left stranded for up to 2 hours waiting for transport. Personally, after 4-6 hours on dialysis treatment, I don’t feel very well due to feeling sick and weak so I need to get home asap so I can have a lie down and recover from my treatment”

“The most common complaint from most patients is the uncertainty of the times they are picked up and collected after dialysis, usually resulting in a lot of time spent waiting around. I have been fortunate in that so far I have been able to use my own transport but if I arrive for dialysis and the person on mornings has been late being picked up, this has a knock on effect and the afternoon patients still end up having to wait around”

“I myself have used the ambulance service and find they do their best”

“I would like it to be noted that when a patient finishes treatment we would like to return home as quickly as possible”

“After dialysis, all a patient wants to do is to go home but when you have to wait for transport home for a long time, it is very upsetting”

“I had an appointment with my consultant and at least 4 weeks before, I informed the dialysis centre that I needed transport. My appointment was for 11.00 a.m. I was still waiting at 11.04 a.m. when my wife rang the ambulance service. I was told my name was not on the list. My wife then rang for a taxi and we arrived at the hospital a few minutes later. I returned home by taxi”

“I am an insulin dependent diabetic and I get travel sick so I can’t eat before I set out. I have a taxi home which means that I am home in time for my carer - If I am not there, they leave and won’t return. Twice recently, I have had an ambulance - it was terrible, the journey took 2 hours. I had no time to eat anything at lunchtime. I didn’t get on the machine until 2.30 p.m. I didn’t get home until 9.30 p.m and my carer had gone so I had no evening meal or supper. I still had to pay my carer because it was ‘my fault’

“It makes my life intolerable when I go in the ambulance”

4.4 Renal Patient Interviews

A number of renal patients across the SHA area, but particularly in Cheshire, live in a more rural setting and receive both their renal care and transport from service providers outside of Cheshire and Merseyside. It was therefore felt essential to speak directly to these patients to see how their experience of transport compared with the rest of the area.

Interviews were held at both Leighton Hospital Dialysis Unit in Crewe and Macclesfield General Hospital Dialysis Unit during July and August 2005. BACK FORWARD CONTENTS 17 Some of the themes to come out of these interviews are summarised:

General Themes • The majority of the patients interviewed used a taxi to access dialysis. They found this service to be reliable and punctual and the people who provided the service to be helpful and friendly. They felt that these components needed to be present in a good transport service.

• Those patients who drove themselves did so because they felt that it maintained their independence and gave them some control over accessing the unit. All those interviewed did not pay to park, but some felt that designated parking spaces and/or a more permanent permit system would be beneficial.

• The experience of patients who had used volunteer drivers or ambulances in the past was poor. The service that patients stated they received from volunteer drivers and ambulance was the opposite to what they felt to be a good service in that these services were not punctual or reliable and took a long time to get to the destination.

• Whilst patients and staff were pleased with the service offered by the local taxi firm it was highlighted that this was more costly than the alternatives. The contract held with the local taxi firm is not between the unit and the provider but is between the ambulance trust and the taxi company. One patient who was aware of these contractual arrangements, questioned whether this situation could be improved through the negotiation of an improved contract with the local taxi company.

Cheshire and Merseyside Renal Transport Action Learning Set - Visit to Renal Unit, Leighton Hospital Renal Unit, Crewe by Simon Banks on 24th August 2005

Introduction The Renal Unit at Leighton Hospital, Crewe is a satellite of the main provision for renal services from the University Hospital of North Staffordshire NHS Trust in Stoke-on-Trent. The Renal Unit provides dialysis to around 47 people, 21 of whom were present on the day of the visit by a member of the Action Learning Set. Of these 21 individuals, 19 spoke with the Action Learning Set representative to give their views of transport for people using renal services. The two members of staff also provided the interviewer with their observations and experience of transport services. The comments and views of those interviewed during the visit are set out below.

Patient feedback Patient A has been on dialysis for 9 months and travels by taxi. They felt the service to be “generally good”. They travel around 6 miles to the unit, which takes around 15 minutes.

Patient B has been on dialysis for 11 years. Prior to accessing the service at Leighton they travelled to Withington Hospital in south Manchester. A volunteer driver provided through the ambulance

BACK FORWARD CONTENTS 18 service took them to Manchester. The volunteer driver was not always reliable and would often be late. They would also take a long and circuitous route to get to Withington. The journey would take between 45 and 90 minutes, depending on the driver, the route taken and the nature of the traffic. They now travel to Leighton by taxi, a journey that takes a maximum of 25 minutes. They sometimes share with up to two other patients. They find the taxi service “excellent”, describing them as “punctual”, “clean” and “helpful”.

Patient C has been on dialysis for 21/2 years, spending 12 months accessing the services at North Staffordshire Hospital and 18 months in the unit at Leighton. They travel to Leighton by taxi, which is a 20 minutes journey. They usually come on their own, but have also shared transport with others on the same route. They find the taxi service “reliable” and “punctual”. When they accessed the services at North Staffordshire Hospital they were taken by a volunteer driver, a longer journey that was lengthened by the propensity for volunteer drivers to take a “trip around the houses” rather than the most direct route.

Patient D drives themselves to the unit. They like the independence that this gives them. If they are unwell their spouse will drive them. They have a blue badge and do not have to pay for parking. If they had to use alternative transport they would want it to arrive on time at their home and at the unit. They have other health needs and access NHS services in other parts of the country. This means that they are incurring considerable costs, some of which they are trying to claim back through the Benefits Agency. They found out about this from a friend, having been told by NHS staff in another hospital that they would not be able to get any financial assistance.

Patient E was originally on home dialysis, supported by the services in Manchester, prior to a transplant. The transplant failed some 6 years ago at they started to use the services from Leighton. They began to use volunteer drivers and ambulances to get them to and from the unit, an experience they described as “horrendous”. They experienced long waits post-dialysis and were taken on long journeys with multiple pick-ups and drops. They are now using the taxi service, which they described as “excellent”. The longest they have had to wait to go home has been 1 hour, but in most cases the taxi is waiting for them or arrives within 10 minutes. They sometimes share with other patients, but this does not impact on the journey time of 10 minutes. They stated that the taxi service has brought a huge improvement in quality, but that they know it to be an expensive means of providing a transport service.

Patient F has been accessing renal services for 25 years. For the past four years they have been receiving dialysis at Leighton. They use the taxi service, which they find to be punctual. They have no problems with the service. Their journey from home to the unit is approximately 20 minutes.

Patient G drives themselves to and from the unit. They have only been on dialysis for 3 months. They started dialysis at North Staffordshire Hospital, being transported there in an ambulance. They described this services as “hopeless”, with the ambulance either being too early or too late, long and circuitous journeys with multiple pick up and drop off points, uncomfortable vehicles and a wait of 1 to 2 hours to go home post-dialysis. Since attending Leighton they have, as stated, driven themselves to and from the unit, a journey of 10 minutes. They have a blue badge so they do not have to pay to park. If they did not have a blue badge the hospital would provide a free parking pass that is renewable on a weekly basis. If they could not drive themselves they would wish to utilise the taxi service. BACK FORWARD CONTENTS 19 Patient H has been attending Leighton for dialysis for 1 year. They use a taxi, which they sometimes share with another patient. The journey to and from the unit takes around 10 minutes. They find that the taxi is usually on time and clean and that the drivers are helpful and friendly.

Patient I has been on dialysis at Leighton for 2 years. They live close to the hospital, journey of around 5 minutes, and drive themselves. They value their independence and want to get home quick after dialysis. If they were unwell they would use the taxi service. They do not have to pay to park as they have a blue badge.

Patient J has been attending Leighton for 8 months. They drive themselves to the unit, a journey of around 10 minutes. If they were unwell their spouse would take them. They have parking permit that is renewed on a weekly basis that enables them to park without charge at Leighton. If they could not drive themselves, or did not have a spouse to support them, they would expect any alternative transport to be “prompt”.

Patient K has been attending Leighton for 1 year. They have always used the taxi service and have experienced no problems. They find that the taxis are prompt, punctual and “always there” for them. They share their journey with one other patient. The journey takes around 30 minutes.

Patient L has been on dialysis for just under 10 years, over 5 of which were at Withington. They travelled to and from Withington using volunteer drivers, an experience they described as “a pain”. The volunteer drivers used to collect several patients at different pick up points. There was often a long wait for the driver to arrive post-dialysis. They were always early at Withington but late leaving and getting home. For the past 4 years they have been travelling to Leighton by taxi, a journey that takes between 45 minutes and 1 hour. The taxi drivers are punctual and helpful. They feel that they could not improve upon the service they are receiving, given their experience of volunteer drivers.

Patient M has been accessing dialysis at Leighton for two months. They drive themselves the 5 miles to the unit, which takes around 10 minutes. If they did not drive they would want a transport service that was punctual and took as direct a route as possible. They highlighted that the hospital in Stoke had dedicated parking spaces, around 6 to 8 bays, for people accessing the renal unit there. They felt that there should be similar spaces at Leighton. They also felt that a permanent permit should replace the weekly car park pass.

Patient N has been attending Leighton for 1 year. They drive themselves because of the convenience and independence this provides. They have a blue badge so do not have to pay to park. They would not want to be reliant on a taxi if they were unsure as to when it was coming.

Patient O has been on dialysis at Leighton for 1 year. They are brought to the unit by taxi and picked up by their spouse. The taxi journey takes around 5 minutes. They sometimes share with another patient, but this does not extend the journey significantly. They find the taxi service “helpful” and “friendly”.

Patient P has been attending Leighton for 1 year and 8 months. They live within 4 miles of the unit and are taken by taxi, a maximum journey of 10 minutes. The taxi service is “very good” and is “usually punctual”. They sometimes share with another patient. They felt that dedicated parking for those people who drove themselves would be useful. BACK FORWARD CONTENTS 20 Patient Q has been attending on dialysis for 12 months, 3 months of which have been at Leighton and the remainder of the time at North Staffordshire Hospital. Whilst attending North Staffordshire they travelled using an ambulance or a volunteer driver. They found that there was “a lot of waiting” and that this was “quite boring”. They stated that they never knew when the transport was coming or when it would be picking them up. On the journey there were multiple pick ups and drops. The journey by taxi to Leighton takes around 20 minutes. The taxi is on time most of the time and the drivers are “polite and courteous”.

Patient R has been receiving hospital-based dialysis at Leighton for 3 months, having previously been dialysing at home. They use the taxi service, which they find to be “prompt and punctual”. They have also had a “very good experience” of the volunteer driver service when they attended North Staffordshire Hospital. They felt that any transport service should be “punctual, polite and helpful”. For people who used their own transport, they felt that designated parking bays would be useful.

Patient S has been on dialysis for less than 1 year. At the start of their treatment they attended North Staffordshire Hospital and used the ambulance. They found that the journey was long and that they often had to wait around for transport home. They felt that a good transport service should be punctual.

Patient T and Patient U were asleep during their dialysis and were not interviewed.

Staff feedback

Staff A is responsible for booking transport. To do this they produce a standing order that is sent through to the Patient Transport Service (PTS) Control Room in Chester. Transport is then allocated by Mersey Regional Ambulance Service (MRAS) for each patient. The unit has no control over the mode of transport allocated - it could be an ambulance, volunteer driver or a taxi. In 98% of cases, patients on dialysis are using a taxi. If a patient has complications and requires a transfer to North Staffordshire Hospital the unit contacts the Emergency Medical Dispatch Centre (EMDC) in Liverpool for an Emergency Paramedic Service (EPS) vehicle. There is sometimes a delay whilst an EPS resource is allocated. The standing order system with PTS is somewhat inflexible in that it is not easy to make small adjustments in the schedule.

Staff B stated that the cost of using taxis was higher than that of volunteer drivers or ambulances, but that the patients were happier using a taxi service.

BACK FORWARD CONTENTS 21 Cheshire & Merseyside Renal Transport Learning Set – Visit to Macclesfield Dialysis Unit by Dennis Crane on 18th July 2005

I visited the Macclesfield dialysis unit, by prior arrangement, on Monday morning, 18 July 2005. Macclesfield is a satellite dialysis unit managed by the renal centre at Central Manchester and Manchester Children’s University Hospitals NHS Trust.

After introducing myself to staff, I spoke to all but two of the patients on dialysis on that shift, (one was asleep and one receiving nursing attention). I explained who I was, the background to the Learning Set, and the purpose of my visit.

I left copies of the questionnaire and covering information, (copy attached), with each patient, and sufficient spare copies with staff for the afternoon shift patients who dialyse on Monday, Wednesday and Friday. I posted copies of the questionnaire to the unit later for patients on other shifts, with an offer of a follow up visit if any patients wanted to speak to me directly. I have also sought staff views, if they wish to contribute.

A summary of responses received is given below.

Q1. 4 patients travel by some form of ambulance transport to dialysis; one of whom uses a taxi or car on the return journey. The remaining passenger uses a volunteer driver for both journeys, with 2 other patients in the vehicle, (not clear if these are patients attending other hospital departments).

Q2. Only 1 patient used the ambulance service for other appointments. 1 patient had no such appointments, and 2 use family members’ cars. One patient did not answer this question.

Q3. Punctuality, reliability, friendly and caring drivers, and direct routes, (i.e., no multiple pick ups), were quoted as being requirements of a good transport service.

Q4. Punctuality was quoted again as being important by 2 patients in answer to this question. Using a car rather than an ambulance was the preferred method of transport in one case. This patient said 3 dialysis patients living fairly close to each other could use such a car, whereas travelling by ambulance, as at present, they are often delayed by the ambulance picking up other ‘non dialysis’ patients on the same journey. Finally, and importantly, one patient warned of the danger of losing volunteer drivers if the fuel reimbursement rate they receive currently is not increased.

BACK FORWARD CONTENTS 22 4.5 Patient Case Studies

The following case studies are true stories and clearly demonstrate why change is needed in renal transport. They also highlight how everyone has their responsibilities and part to play in resolving these difficulties including renal transport and renal service providers, commissioners, patients and carers.

Case Study No 1 An elderly patient was travelling home by taxi after dialysis. The pick up from the renal unit was fine but at the patient’s house, the taxi driver just dropped the patient off in the dark without giving any assistance to the patient to help them into the house. The taxi drove off straight away leaving the patient to go down the path, into the house. The patient fell on the path, and was lying there for 15 minutes before the carer opened the door to look for the patient and discovered him lying on the path, frightened and confused - his glasses had broken in his fall, and he could not see clearly.

Case Study No 2 A difficult patient consistently sent transport away because he had to wait too long. This patient had a better service than most - a volunteer driver provided a door to door service for this particular patient and there were no multiple pick up involved. Sometimes the patient could be very abusive towards drivers and it was difficult to get a driver to take him because of the abuse they know they would receive. The ambulance trust have a Zero Tolerance Policy on abusive behaviour but they are reluctant to use this policy on dialysis patients, as they understand the necessity of this particular group of patients requiring life saving treatment.

Patients can cause delays if not ready at pick up time and this has a knock on effect throughout the day for the drivers/ambulance crews, and ultimately the renal unit. The ambulance trust have a policy that they cannot leave a dialysis patient’s home, unless the crew/driver are absolutely sure the patient is safe. If they are concerned, they must call the police to break in to make sure the patient has not collapsed. This then impinges on the rest of the day.

Case Study No 3 A patient who had been an inpatient had their standing order for transport cancelled, and not re-instated following discharge from hospital. The nursing home contacted the renal unit to inform them that this patient had not been collected as usual for their dialysis. Unfortunately, as it was an afternoon slot, all the crews were already out on the road. This meant further delay, as the patient needed ambulance transport. The patient was eventually brought in to the renal unit.

Although the patient was brought in by PTS ambulance, because he was late it meant he would be going home “out of hours” for Patient Transport Service who only operate until 8 p.m. The paramedics would have to take him home but that meant he had to wait until they were free (anything up to 3 - 4 hours or longer as this is an emergency service) Alternatively, a bed would need to be found in the hospital for the patient to stay overnight, just because he could not get transport to go home. The paramedics picked this patient up at 11.45 pm. The patient had arrived on unit at 2.45 pm and left at 11.45 pm. This was a very long day for a frail elderly patient who dialysed for just 3 hours. BACK FORWARD CONTENTS 23 Case Study No 4 A patient who does not speak English was almost ready following dialysis and the nurse was just putting the patient’s shoes on, when the ambulance crew said they could not wait any longer as they were “late”. Although the nurse explained the patient was virtually ready, the crew still left without him. This patient was particularly vulnerable because he does not speak English. The nurse was very concerned about her patient. She ordered a taxi herself and took the patient down to the main entrance of the hospital. She wanted to ensure the patient was escorted to his home and not just dropped off in the street. She explained to the taxi driver the patient did not speak English and had memory loss. The following day, the patient’s daughter contacted the ward to complain her father had been dropped off by the taxi and was found by a stranger, clinging to a lamppost extremely distressed and frightened in the dark as he had become confused and did not know where he lived.

Case Study 5 A patient who was aggressive and abusive to the ambulance driver following which the driver felt unable to take the patient due to this behaviour. The patient was abusive to other patients in the vehicle and was not ready when the ambulance arrived to pick him up causing all patients to be delayed for their dialysis.

BACK FORWARD CONTENTS 24 5. Key issues in Renal Transport

BACK FORWARD CONTENTS 25 Overview

There are a number of specific concerns regarding the provision of an effective renal transport system. These are summarised below and have been further supported from the work undertaken by the Learning Set throughout the year.

Renal transport is a fundamental part of a good renal service but this is not simply about vehicles. It is about a clear understanding of the nature of renal patients and their carers and how a systematic approach to the transport options for patients can have a profound impact upon their sense of wellbeing and how they live their lives. It can affect the smooth running of the dialysis unit with delays in one patient journey having a significant, and often costly, impact upon the entire shift for a number of patients.

The Learning Set identified these issues through a variety of ways including the Stakeholder events, meetings and interviews.

The need to develop patient centred services

There is clear recognition of the logistical difficulties that can be experienced in providing regular transport for a significant number of geographically dispersed patients. Dialysis times may vary or may change due to holidays or illness and patient’s individual needs may also change over time. Remaining responsive and flexible in meeting these challenges can be difficult and sometimes the patient focus may become secondary in an attempt to manage the transport system cost effectively. The Learning Set recognised the uniqueness of renal transport. This service is required 365 days a year and cannot be vulnerable to bank holidays, lack of drivers or inappropriate vehicles. Transport is the lifeline for many dialysis patients without which they cannot access their life saving treatment. Inadequate transport does not merely mean a slight inconvenience for a single patient- it has a knock on effect for every other patient on their dialysis shift and those following on in later shifts, it affects a large number of carers and the staff in the unit.

The need for more explicit and consistent standards and expectations

The majority of renal transport is good but this is often reliant on the individual drivers themselves, many of who develop good relationships with patients over time. Outside of the ambulance service trusts, there is however little explicit documentation regarding the training, standards and expectations for this service. Examples of good practice from around the country have shown that where there are clear service specifications in place, there are much clearer routes to resolve difficulties.

BACK FORWARD CONTENTS 26 The need to address communication difficulties

Communication problems are often at the root of the transport difficulties and these may be for a variety of reasons: -

• A patient may be in hospital and will have their regular dialysis slot cancelled but this has not been conveyed to the ambulance service resulting in a wasted journey.

• An ambulance may be delayed picking up a patient but this delay is not notified to other patients waiting who become anxious.

• A patient may be waiting after dialysis to be taken home but communication between the renal unit and taxi firm breaks down, leaving the patient stranded for hours. This can be further complicated when the patient’s first language is not English and the transport provider may not be able to explain any difficulties to the patient.

• A carer may decide they would like to bring the patient in by themselves and forgets to notify the renal unit to cancel the ambulance, which results in an abortive journey.

The Learning Set considered the use of Information Technology to support the process of communication and this is outlined in section 12.

The need for a consistent approach to transport provision

There is considerable variation in the provision of transport for renal patients. In some areas, patients have been charged for elements of their transport whilst in the majority of other areas, this is free of charge. In some areas, patients or their carers have to pay for car parking at their dialysis unit but not in other areas. Eligibility criteria for transport are in place in a number of areas but there is lack of consistency in the assessment and application of these. Part of the role of the Learning Set is to make recommendations that could be applied nationally in order to move towards a greater consistency and equity in the service all renal patients receive.

The need to jointly plan for the future

It is known from the Renal NSF projections that the number of patients who will require dialysis and transplantation in the future is set to double over the next 10 years and that the main area of growth will be in older patients with additional medical complications such as diabetes and cardiac problems. These patients may not be suitable for transplantation or other forms of dialysis. These patients are likely to require hospital haemodialysis and many of them will be dependent upon transport to take them to their regular dialysis sessions or their outpatient appointments.

Work undertaken across Cheshire and Merseyside Renal Network has estimated a growth in the dialysis population from 640 in 2003 to around 1000 in 2010 and it is anticipated that this patient number will continue to grow for the foreseeable future.

BACK FORWARD CONTENTS 27 Recent work undertaken by the Haemodialysis Capacity Planning subgroup of the Cheshire and Merseyside Renal Strategy Group outlined a programme of haemodialysis expansion and it clearly recognised that early discussions will need to be held with key transport providers to enable them to plan ahead for this growth in demand. As a part of this work, an analysis of travel times was undertaken to indicate where current haemodialysis patients were travelling from for their dialysis and whether they were within the 30 minutes travelling time standard as outlined within the Cheshire and Merseyside Renal and Transplantation Strategic Framework. The isochrones that were produced (see indicative example) showed coloured shading (red to yellow) to indicate a 30 minute peak travelling time and black dots indicating renal patients. It could be clearly seen that a large number of dialysis patients at present are taking longer than 30 minutes to reach their dialysis unit.

SSCT: Indicitive Map showing Renal Dialysis Project: 30 Minute Peak Time Isochrones around Royal Liverpool

BACK FORWARD CONTENTS 28 Another consequence of the dialysis expansion might be a change in the nature of the patient journeys. Dialysis may be more local and therefore travelling times will be reduced but there will be more journeys due to rising patient numbers and patients may be more dependent and require different kinds of transport.

In addition to a growth in patient numbers, there may also be a change in the dialysis technology used. An example of this might be a greater use of daily dialysis and the transport arrangements need to be able to respond flexibly to this.

The need to address car parking and charging

A very small number of renal patients drive themselves to and from their own dialysis but many have carers who can drive them some, if not all, of the time. Close access to the renal units is very important with protected car parking, as patients will not be able walk large distances from the main hospital car parks. This car parking should be dedicated and free of charge to encourage carers who do undertake this. Any cost which must be incurred due to local car parking arrangements should be reimbursed. The importance of car parking was highlighted within the NHS guidance on Estates - Health Building Note 53 (HBN 53) Facilities for renal services which states:

‘Many patients attending satellite unit are likely to arrive by their own transport. However, they may also travel to the unit by public transport or by NHS patient transport services including taxis or ambulance. Where possible, therefore, satellite units should be located near public transport routes. It is also important to provide dropping off points for ambulances and designated patients’ care parking spaces immediately adjacent to the unit. Based on a 12 station dialysis unit, it is recommended that there is one dedicated space for every three dialysis stations, of which one of the four should be a disabled width bay’.

The need for appropriate financial reimbursement for patients and carers

The costs associated with transporting renal patients to and from their regular dialysis is very significant and will become an increasing financial burden in the future when more patients will require support in getting to and from their dialysis sessions. Some carers take on this on behalf of the patient and it is considered only reasonable and fair to reimburse carers for all reasonable costs incurred as a result. This will mostly include petrol costs and car parking charges reimbursed at a standard rate.

The need for innovative and creative solutions (One size does not fit all)

The Learning Set found a number of examples of good practice where innovative thinking had led to significant improvements in the renal transport service available. The key to local solutions is in having a shared understanding of the service requirements and a flexible but consistent approach to the options for meeting these. One example is outlined overleaf.

BACK FORWARD CONTENTS 29 Bolton Dialysis Unit

Bolton is an 18 station dialysis satellite unit managed by Salford Royal Hospitals NHS Trust as the renal centre and operating 2 shifts 6 days per week which serves the Bolton area.

Patients who are suitable for the unit are stable, relatively well and mobile. There are some self-drivers supported by carers and free dedicated car parking is available on the unit doorstep. The patients who do use transport services can usually be managed by a single driver. . In setting up the new unit, Bolton had the advantage of being able to schedule the dialysis timetable from a blank sheet so that times could be assigned and staggered according to patients’ home locality, transport mode, lifestyle and working patterns. For example, groups of transport patients are dove-tailed between self-drivers and working patients are accommodated in late afternoon shifts.

Transport is provided by two 9 -seater vehicles with wheelchair access ramps. The vehicles are used solely for renal patients and are leased by Salford Royal Hospitals NHS Trust (SRHT). The drivers are a dedicated part of the renal team.

The system has worked very successfully and taxis have only had to be used in exceptional circumstances such as periods of driver sickness absence.

For further information on the transport arrangements in Bolton, please contact Sister Barbara Murray at [email protected]

The need for more support to non ambulance drivers

In many places, the volunteer driver schemes work extremely well. Drivers build up a good relationship with patients over many years and there appear to be few difficulties. However the nature of this service is that it is reliant upon volunteers and like a taxi service, it is potentially more variable and less controlled than more formal PTS transport. There are key issues to address here including the quality of the vehicle the patient is being transported in, quality and controls assurance regarding driver training and reliability.

The need for choice

Patients should have some choice regarding the type of vehicle they are transported in depending upon their condition and dependency. The key to having a flexible responsive transport system is to keep the focus on the patients’ needs. Not all patients require a PTS ambulance, not all carers can support in driving patients to their units and the solutions for patients living in rural areas might be quite different to those more urban based patients. Services such as Ring and Ride are an important part of that choice.

BACK FORWARD CONTENTS 30 The need to consider emergency transfers of renal patients

Renal patients who require emergency transport will always be taken to their nearest Accident and Emergency department for their immediate needs. Should they require admission, there will need to be operational policies in place at each local hospital and a formal agreement that renal patients should be transferred to a renal centre with inpatient beds where they can receive their haemodialysis. This will require agreement to be reached between hospital trusts and also will impact upon the inpatient nephrology bed capacity at the renal centres.

The need for effective and strengthened commissioning

Effective commissioning is essential to develop patient centred renal transport services. This should begin with a comprehensive assessment of the need for such transport, based upon existing and projected activity and an analysis of the likely levels of dependency that will exist within the chosen population. From this information a service model can be mapped, taking account of the existing local transport infrastructures and gaps identified. Working with service users, transport providers and renal service providers, commissioners will then be able to develop service specifications, instigate tendering processes and award contracts that will deliver comprehensive and holistic transport provision for people accessing renal services. Commissioners will then have a role, with the stakeholders mentioned above, in monitoring the delivery of that provision to ensure that it continues to meet the needs of users.

In some places this cyclical process clearly works well, with commissioners developing transport provision through service level agreements and contractual arrangements that are specific to the needs of people accessing renal services. In other areas non-emergency transport provision for renal patients is part of general contractual arrangements for all aspects of patient transport services, effectively hiding activity and actual costs of the renal elements of this provision. These general contractual arrangements are often based on historical activity and have not been subject to review for some time and are therefore not truly reflective of the current and future needs of the population they serve.

The need for improved coordination and control

Examples of good practice where the transport seems to run well mostly have a central coordinating role. This function has responsibility for maintaining an overview and acting as a central point of contact for all transport arrangements.

BACK FORWARD CONTENTS 31 6. The Belfast Experience

BACK FORWARD CONTENTS 32 Discovery Visit to Belfast City Hospital, 28th November 2005

Introduction

Within a few weeks of the formation of the Learning Set we heard that colleagues in Northern Ireland had addressed the issue of transport for people accessing renal services through an integrated and holistic commissioning process. Contact was made with Belfast City Hospital Trust, the regional centre for renal services in Northern Ireland and with the Regional Supplies Service of the Central Services Agency who lead the procurement of a dedicated renal transport service for the Hospital. Following meetings at conferences in England and information sharing by telephone and e- mail it was agreed that a visit to Belfast would be beneficial in order to discover how the service was operating in practice. The text below represents the findings of the Learning Set following discussions with the Regional Supplies Service of the Central Services Agency, Belfast City Hospital and the independent sector transport provider, Miskelly Transport Services.

Belfast City Hospital Trust’s Haemodialysis Unit

At the time of the visit to Belfast the provision of health and social care in Northern Ireland was overseen by four health boards - Eastern, Northern, Southern and Western. The Eastern Health Board is the principal commissioner of the services provided at Belfast City Hospital Trust.

As stated above, Belfast City Hospital Trust is the regional centre for nephrology (renal services). The dialysis unit, which was built in partnership with the independent sector, has 43 stations that are available six days per week between 7.30am and 1am. Each day is split into three dialysis shifts, morning (7.30am to 12.30pm), afternoon (1.30pm to 6.00pm) and evening (7.00pm to 1.00am).

Approximately 250 people access haemodialysis at Belfast City Hospital, the majority (80%) of which are resident within the area covered by the Eastern Health Board. The remaining people are from the areas served by the Northern Health Board (16%) and the Southern Health Board (4%), whilst one individual resides in the area covered by the Western Health Board. Of these 250 around 15% are believed to be in employment.

The development of the contract for renal transport services

Prior to the establishment of the current contractual arrangements the Patient Care Service (PCS) of the Northern Ireland Ambulance Service (NIAS) and private taxi companies provided the majority of non-emergency patient transport for people accessing renal services. There were a number of problems with these arrangements, particularly in regard to the reliability of the service provided and the impact this had on productivity in the renal unit. The level of complaints about the service was high and there were probity issues in regard to the conduct of the private taxi providers. In response to these circumstances a decision was made to seek alternative provision for non-emergency transport for people using renal services.

BACK FORWARD CONTENTS 33 Interim arrangements were established with an independent sector provider in April 1999 for six months, and subsequently extended for a further six months. During this time, working with the Regional Supplies Service (RSS) of the Central Supplies Agency (CSA) who provide procurement expertise and support to health and social services in Northern Ireland, Belfast City Hospital established the value of the contract to provide transport for people accessing renal services to be over the limits set by the European law. The dialysis unit drew up a service specification from which a contract produced based upon fixed activity volumes, with allowances for over and under performance against contracted activity. The contract was then put out to tender for a period of 3 years, with an option of an extension of a further 2 years. In April 2000 the contract was awarded to MTS (Miskelly Transport Services).

Learning from their experiences of the pilot in 1999 and the first year of the contract (2000), the RSS and the Renal Directorate collaborated closely on the renegotiation of the contract. They took a joint approach to contract negotiations, utilising the improved management information they had developed over the preceding year. These negotiations resulted in pricing of the contract being moved to fixed monthly sums. This allowed for variances in performance against contract to be smoothed over time, allowing for growth to be contained within reasonable and agreed limits. Agreed annual financial uplifts were included within the contract and MTS were offered an extension of the contract to its full 5 year term to secure their commitment and agreement to the revised contract payment arrangements. Both the RSS and Belfast City Hospital believe that this process allowed them to maintain quality whilst containing costs.

After a second tendering exercise, a new contract was awarded in 2005, again for a period of 3 years with an option of an extension of a further 2 years. The second tendering process attracted 8 expressions of interest, with 4 organisations being asked to complete the full tender documentation.

What is happening now?

It is estimated that 60% of people who dialyse at Belfast City Hospital use the transport provided by MTS. These people are all resident in the area served by the Eastern Health Board, the area that is covered by the contract. The remaining 40% of people use their own transport or travel with the NIAS PCS, who provide non-emergency transport for renal patients in the other Health Board areas. People who are resident in the Eastern Health Board area who make their own transport arrangements can opt to utilise the MTS provision at any time.

It was stipulated in the tender documentation that organisations bidding for the contract with Belfast City Hospital should be able to utilise information technology to plan and deliver their transport services. The use of such technology has been used by MTS and Belfast City Hospital to zone patients by postcode to facilitate more efficacious route planning and subsequently an improved service for patients and clinicians. This has involved reviewing and rescheduling dialysis slots, which met with some initial resistance from service users. By working together, MTS and clinical staff at the dialysis unit were able to address the concerns of service users about changes to their dialysis slots and did their best to match slots and routes with the lifestyle of the individual. Whilst the move to zoning caused some temporary difficulties it has delivered people to and from dialysis on time and by the most direct route.

BACK FORWARD CONTENTS 34 The use of technology also improves service delivery by enhancing communication between patient, transport provider and the dialysis unit. The MTS Transport Co-ordinator acts as a link to keep patients and the dialysis unit informed of any problems with the transport. All MTS drivers are equipped with a hands free mobile phone and pager; mobile data terminals (MDT) are also being introduced in MTS vehicles in the near future to further improve communication with drivers. MTS utilise a software package called Minor Planet alongside Autoroute, access to Belfast City Centre traffic cameras and a Global Positioning System (GPS) on each vehicle to plan, schedule, monitor and deliver their transport service. This enables them to identify the most efficacious routes, avoid traffic ‘hotspots’ or other potential delays, such as civil disturbances or marches, and enables MTS to know exactly where each vehicle is located at any time.

The improved scheduling and operational delivery of transport has brought benefits to the Dialysis Unit. At the time of the Learning Set visit, the Dialysis Unit Co-ordinator was in the process of transferring transport information to E-MED, a renal specific IT system. The Dialysis Unit Co-ordinator tries to group patients in bays according to a specific station and by consultant. A dedicated nurse then services each bay, with an additional nurse supporting all the bays in the ward. Patients are staggered within each session according to the length of their dialysis time, with each patient being given a specific appointment time for dialysis and a waiting time for transport post-dialysis. This has become simpler as the transport service has become more reliable and the working relationships with the provider have become more collaborative. Indeed, the synergies that have been achieved between the dialysis unit and the transport provider has enabled the unit to make better use of their available dialysis stations and also to close at 1am instead of 2am as patients are now leaving on time.

Belfast City Hospital - patients and vehicle details

Dialysis Acute Shifts Patients using Vehicles Patients per Stations nephrology beds transport vehicle

43 4 3 per day, 125 - 135 7 plus 19 6 days per week 1 floating

MTS use a fleet of Mercedes Sprinters that are built to order. Whilst these are more expensive than comparable vehicles such as the Ford Transit or Renault Traffic, MTS believe them to be more reliable and to have more room for patients. Improved reliability means less downtime, although downtime between shifts is used to service another contract the company has for renal transport services in the Eastern Health Board area. A ‘spare’ vehicle is also maintained to support the operational fleet and as a contingency in the event of problems with other vehicles. The new contract has also brought in a ‘floating vehicle’ for a trial period. The ‘floating vehicle’ is being used to further reduce the use of taxis, which are expensive, for people who are late in accessing or leaving dialysis and to pick up new patients until they can be accommodate on existing routes.

In common with other renal services with which the Learning Set has had contact, Belfast City Hospital has seen demand for haemodialysis increase over recent years as the population it serves has aged. Indeed, this has seen more people wishing to access the afternoon dialysis session, which is more convenient for frail, older people. These demographic changes also impact on transport provision, with a trend of increasing dependency and decreased mobility. Mobility often decreases over time, with people who are initially mobile needing additional support and possibly a wheelchair. As each wheelchair takes out 4 seats from a vehicle, this makes cooperative forward planning essential. BACK FORWARD CONTENTS 35 As well as improving transport for patients in terms of reliability and punctuality, it is believed that the new arrangements have added value to the patient experience. MTS staff have developed excellent relationships with patients, operating almost as an ‘extended arm’ of the dialysis unit. When collecting and setting down patients MTS staff enter the individual’s home to ensure their safety. The drivers also act as an early warning mechanism for dialysis unit staff, identifying any problems with patients.

Quality of service is maintained through targeted training and development of MTS staff in health and safety, manual handling, first aid and other relevant issues. The performance of the contract is monitored by Belfast City Hospital and MTS on a daily, monthly and quarterly basis. The actual level of activity is compared to contracted activity and explored further by other variables including levels of mobility. Service users are also engaged in monitoring of the service. Since the introduction of the arrangements with MTS the number of complaints about the service has decreased substantially.

Conclusions Based upon the evidence presented to the Learning Set team, it appears that the transport service for people accessing haemodialysis at Belfast City Hospital has dramatically improved since the introduction of MTS as the preferred provider. A highly collaborative approach has been adopted in regard to procurement, service delivery and monitoring. This has had clear benefits for patients, clinicians and the transport provider. The logistic skills and expertise of MTS, as well as their innovative and impressive use of technology, have been utilised extremely effectively to provide punctuality and reliability of service.

It seems that through strong strategic and business level relationships, supported by excellent channels of communication, a balance has been achieved between meeting patient need and providing a viable and sustainable service. Whilst recognising that there will always be operational challenges in any transport service, even in that provided by MTS to Belfast City Hospital, it is the view of the Learning Set visiting team that there is scope for transferring the knowledge acquired from ‘the Belfast experience’ into other scenarios.

BACK FORWARD CONTENTS 36 7. Ambulance Trust Meeting

BACK FORWARD CONTENTS 37 Overview

The Learning Set recognised that ambulance trusts are key partners in the provision of patient centred transport. It was identified that five ambulance trusts provided transport services for people accessing renal services in and from Cheshire and Merseyside, a situation that creates significant ‘cross border’ flows of patients. In addition to engaging with Mersey Regional Ambulance Service NHS Trust (MRAS) directly as members of the Learning Set, it was felt that it was also important to find out what the other ambulance trusts serving the area were doing, to share the actions of the Learning Set with them and to seek their views in terms of the key issues they faced in providing transport for people accessing renal services.

The Chief Executives of the following organisations were invited to send up to three staff each to participate in a ‘listening event’ for the ambulance trusts that provide transport for people accessing renal services in and from Cheshire and Merseyside:

• Greater Manchester Ambulance Service NHS Trust (GMAS) • Lancashire Ambulance Service NHS Trust (LAS) • Mersey Regional Ambulance Service NHS Trust (MRAS) • Staffordshire Ambulance Service NHS Trust (SAS) • Welsh Ambulance Service NHS Trust (WAS)

The Learning Set was pleased that all but one (Staffordshire Ambulance Service Trust) of the ambulance trusts attended the listening event on 9th September 2005.

The key themes that emerged from this event were:

• There has been a substantial growth in activity into renal units in recent years, particularly as more satellite units have opened. This trend is likely to continue.

• The levels of dependency of the people conveyed have increased, with more people needing additional assistance due to decreased mobility. Simply, people who need wheelchairs require more staff and larger vehicles to convey them safely.

• Scheduling of transport can be influenced by circumstances beyond the control of the provider. This includes delays within the renal unit, inappropriate bookings, requests for transport at short notice and people not being ready for their transport at pick up times. Communication with renal units could be improved.

• Some patients are unnecessarily travelling long distances. Sometimes this is because they choose to continue attending a particular unit rather than one nearer to home.

• Information technology can be used to map ideal journey times and routes. Patients can then be ‘zoned’ and transport planned accordingly. This said, such planning does not always match with the needs and lifestyles of patients.

BACK FORWARD CONTENTS 38 • Agenda for Change has made it difficult for services to be provided with existing resources in the early morning, evening and at weekends.

• Funding and activity for renal transport services are largely hidden by their inclusion as part of wider contractual arrangements for Patient Transport Services (PTS) with acute NHS trusts. All of the ambulance trusts except for GMAS had multiple commissioning and contractual arrangements. More activity is being delivered for less money.

• The transport mix of ambulance providers includes volunteer car drivers, private taxi contracts and PTS ambulances. The PTS ambulance fleet is often ageing. Private taxi companies are expensive, but can respond quickly to the needs of people who are mobile and accessing satellite units. Volunteer drivers are highly valued, but the mileage rates they are paid are relatively low.

• Renal transport services need to be commissioned outside of standard PTS contractual arrangements. This said, to provide services for people accessing renal services to an acceptable standard would be costly.

NOTES FROM CHESHIRE AND MERSEYSIDE RENAL TRANSPORT ACTION LEARNING SET LISTENING EVENT WITH AMBULANCE SERVICES HELD ON 9th SEPTEMBER 2005

Introduction

In June 2005 the Cheshire and Merseyside Renal Transport Action Learning Set wrote to the Chief Executives of the five ambulance trusts that provide non-emergency transport for people accessing renal services in and from Cheshire and Merseyside. The correspondence set out plans to hold a special meeting with representatives of those trusts as part of the Learning Set’s programme of information gathering about transport services from patients, clinicians and other key stakeholders in the renal community. The letter established that the purpose of the meeting was to provide ambulance service colleagues with information on the work of the Learning Set and give an overview of the key themes identified as part of this initiative. Most of all, the Learning Set wanted to hear more about the experiences of ambulance trusts in providing transport for people accessing renal services, it was for this reason that we called the meeting a ‘listening event’.

The listening event was arranged for 9th September 2005, allowing sufficient lead in time for the invited trusts to identify appropriate people to attend. We also took account of the geographical spread of the invited trusts that covered Cheshire, Greater Manchester, Lancashire, Merseyside, Staffordshire and North Wales and arranged for the meeting to take place in Warrington, a location that was relatively central and easily accessible by motorways or public transport.

BACK FORWARD CONTENTS 39 The following people attended the event:

Action Learning Set Members

• Simon Banks, Specialised Commissioning Manager, Cheshire and Merseyside Specialised Commissioning Team.

• Sarah Hodson, Acting Ward Manager (Renal Unit), Wirral Hospital NHS Trust.

• Jenny Scott, Head of Specialised Commissioning, Cheshire and Merseyside Specialised Commissioning Team and Learning Set Facilitator.

• Marcella Sherry, Directorate Manager Nephrology and Transplant Unit, Royal Liverpool and Broadgreen University Hospitals NHS Trust.

• Joan Taylor, Renal Business Support Manager, Wirral Hospital NHS Trust.

Ambulance Trust Representatives

• Joanne Davies, Liaison Supervisor, Welsh Ambulance Service NHS Trust. • Barry Goodwin, Assistant Divisional Manager, Greater Manchester Ambulance Service NHS Trust. • Rod Haslam, Customer Support Manager, Greater Manchester Ambulance Service NHS Trust. • Derek Laird, Director of Patient Transport Services, Lancashire Ambulance Service NHS Trust. • Diane Roberts, PTS Control Manager, Mersey Regional Ambulance Service NHS Trust. • Barbara Williams, Relief PTS Supervisor, Welsh Ambulance Service NHS Trust.

The Learning Set would like to thank our ambulance trust colleagues for their participation in this event - it was greatly appreciated.

What we heard from ambulance trusts

Mersey Regional Ambulance Service NHS Trust (MRAS)

There has been a substantial growth in activity into renal units in the last 2-3 years. Many of the smaller units have grown. The ability to deliver a timely service is made difficult by the distances people are travelling and the increased dependency and decreased mobility of patients. The scheduling of transport can be influenced by circumstances beyond the control of the service, with any complications in a morning session impacting on the provision in the afternoon.

The PTS fleet is ageing, although the Trust is instigating a review of these vehicles. Larger vehicles are needed due to the increase in the numbers of people accessing renal services who use wheelchairs.

BACK FORWARD CONTENTS 40 Around 40 volunteer car drivers complement the PTS ambulance fleet. This has declined from a peak of 80 drivers a few years ago. Recruitment of volunteer care drivers is increasingly difficult. Volunteer car and taxi services work well only when the patients have low levels of dependency.

In some cases, if the ambulance transport is not there precisely on time, people will demand a taxi or a car and not an ambulance. Some people will refuse to travel in an ambulance at all. As with the PTS as a whole, there are also a number of inappropriate bookings.

PTS as a whole are considered underfunded, with the budget being substantially overspent. It is increasingly difficult to manage increasingly dependent patients, the growing numbers of morbidly obese people who require additional support and specialist transport provision within the monies allocated to the Trust.

Around 20% of all PTS activity is now in renal services. Each Trust has their own PTS contract or SLA within which renal services are included. They are not dealt with separately. This means that there are multiple commissioning arrangements, which cannot be effective.

PTS Control is based in Chester and is open from 0700 hours to 1900 hours. Vehicles are on the road from 0630 hours. There is a contract with the Royal Liverpool to provide transport for walking renal patients until 2am; there is no similar arrangement with the other renal units. Due to Agenda for Change and other factors it is increasingly difficult to provide cover in the early morning, volunteer car drivers are also reluctant to cover these journeys, as the rate of mileage they are paid, which is already low, is not increased to reflect the unsocial nature of the journey.

Greater Manchester Ambulance Service NHS Trust (GMAS)

Representatives from GMAS outlined that there was a problem in that renal transport services are part of Patient Transport Services (PTS) and are therefore hidden within and overall contractual arrangement with a host NHS trust. They also stated that delivering effective transport services is a hugely complicated process.

In April 2004, as part of a process led by Bury PCT, GMAS moved from 23 separate Service Level Agreements (SLAs) for PTS to a single SLA for the whole of Greater Manchester. This is accompanied and complemented by a single set of quality standards. Whilst this was a positive development, it soon became apparent that these were not applicable or appropriate to certain specialist centres, especially those providing services related to a NSF, such as renal or oncology services. In response to these issues in renal services, a Renal NSF Strategy and Transport Group was established to develop an overarching transport strategy for renal services. This group meets quarterly and has been meeting for around a year.

Transport problems are not always the responsibility of the provider. The renal unit may be short of staff; people may have problems whilst on dialysis and so on. These all impact on the ability of the transport provider to deliver a timely service. For example, if 4 patients are collected for the journey into the renal unit at 0700 hours they are supposed to be ready for pick up at 1230 hours for the return journey. If there have been delays whilst on the unit then only 1 or 2 will be ready to leave. The provider then has to make a decision whether to wait for the remaining patients or leave and return later. In either case there will be frustration amongst the patients at the delay in getting them home.

BACK FORWARD CONTENTS 41 The full PTS has developed a set of eligibility criteria for access to the service they provide. Examples of eligibility criteria for renal transport from around the country have been studied. The conclusion of the strategy group is that the imposition of any eligibility criteria for renal patients is a ‘non-starter’ politically, in public relations terms and clinically.

GMAS looked at using other transport providers to take patients to renal units and other health facilities. This would have involved using local ‘ring and ride’ and Social Services transport. Ambulance service unions opposed the proposals.

Choice is becoming a big issue for transport providers. There are a large number of patients travelling across the Greater Manchester area and beyond to access treatment from centres that are not local to where they reside. This has an obvious impact on the length of journey times and the operational management of scarce PTS resources. Similarly, there will be a significant increase in the number of satellite units and dialysis stations in the next two or three years, which will increase demand upon PTS resources.

Overall, getting to renal units on time is not as big a problem as getting people back home afterwards due to the problems described above. Work has taken place with renal units to improve communication, with renal units faxing local control centres with the likely ready time for each patient. GMAS will then try, where appropriate, to accommodate any changes.

The strategy group referred to above has undertaken some work on a SLA for renal services. This was very much a ‘blue sky’ exercise to set out what would be required from a ‘utopian’ service but was based on actual renal service activity. It is anticipated that this would be very costly.

The fleet mix utilised by GMAS includes volunteer cars and private taxi firms in addition to some ambulances. There has been a noticeable increase in the dependency of the patients conveyed by GMAS due to decreased mobility. There is a high need for renal dialysis from black and minority ethnic people compared to the general population. Due to the demography of Greater Manchester, GMAS conveys several people from the black and ethnic minority communities.

Information technology has been used to map ideal journey times and routes. This is only useful if people attend the centre nearest to where they live. As stated above, this is not always the case so it is difficult to model PTS provision.

Lancashire Ambulance Service NHS Trust (LAS)

The representative from LAS stated that they faced similar issues to those reported upon by colleagues from MRAS and GMAS. Activity in renal services has doubled in the last five years. People are living longer, are more dependent and less mobile and renal disease is being recognised earlier.

The service provided by LAS covers an area that is largely rural, with a number of large towns and high numbers of people from the Asian community in East Lancashire, a group amongst whom renal disease is more prevalent than amongst the general population. The PTS takes patients to and from

BACK FORWARD CONTENTS 42 Aintree, Waterloo and Liverpool and Broadgreen in the Cheshire and Merseyside Strategic Health Authority (SHA) area, Preston, Blackpool, Chorley, Accrington, Burnley and Westmorland in the Cumbria and Lancashire, Rochdale and Central and South Manchester in the Greater Manchester SHA area and also as far as Leeds. Of the total PTS provided by LAS, which has a £8million budget and undertakes around 800 000 patient journeys per year, around 8.5% of activity is with renal services.

Approximately 160 volunteer car drivers, who have a dedicated manager, provide much of the service. There is also some sub-contracting to strictly vetted private taxi companies as well as some ambulance activity.

The transport service for renal patients is commissioned within the existing PTS contracts, of which there are around 30. Transport for renal patients is not dealt with as a special case; so more activity is being delivered for less money. It is largely unrecognised within the commissioning process. Renal transport should lie outside of the mainstream PTS commissioning.

Early morning, late evening and weekend journeys are difficult to cover. The resources, in terms of people and vehicles, are not in place and Agenda for Change has made it more costly to deliver cover at these times.

In regard to choice, patients are travelling significant distances to attend the unit of their choice rather than the unit that is nearest to them. For example, one patient travels from Fleetwood to South Manchester by ambulance three times a week, journey that takes around 2 hours. The transport provision for this patient costs more than the dialysis they receive.

Sometimes transport can be requested at very short notice by renal units, giving literally minutes or hours for PTS to arrange the patient’s journey. As cited by GMAS and MRAS, if a patient is ill or if any other complications occur at the renal unit this has a knock on effect for the transport service.

Hospitals could help by ‘zoning’ patients for transport, with patients who travel from the same area receiving dialysis on the same day. Whilst this may not work, as it may not suit the patient, such methods should be explored.

In regard to eligibility, there should be some work nationally. Should C1 patients be transported at all? There are also cost barriers for renal patients incurred through repeated travel, such as parking costs.

The development of more independent sector provision has brought about new issues. The host acute trust is still paying for the transport to the unit, but the independent sector provider orders the transport. The independent sector provider is not as interested in the cost of that transport.

Staffordshire Ambulance Service NHS Trust (SAS)

Staffordshire Ambulance Service NHS Trust (SAS) declined their invitation to participate in these discussions, as the listening event did not include the Trust purchasers of their patient transport services. In their response, SAS outlined their views on the need to have lowest cost transport, the lack of explicit quality standards to drive improvements and their view that there was little flexibility to improve the quality of transport provision.

BACK FORWARD CONTENTS 43 Welsh Ambulance Service NHS Trust (WAS)

In WAS non-emergency patient transport services are referred to as Patient Care Services (PCS). The PCS provided by WAS experience very similar challenges to those discussed by GMAS, LAS and MRAS.

The standard within which WAS provide PCS is to arrive at the unit on time and depart within 30 minutes, although the contracted standard is 60 minutes. The standards are not always achieved.

As with other services, there are lot more people needing ambulance transport because of their level of dependency. There is also difficulty in providing early morning services, particularly the cross border journeys into Cheshire and Merseyside. Whilst journey by car can be facilitated at any time, ambulance journeys for dialysis from Wales to Arrowe Park Hospital on the Wirral and to the Steam Mill in Chester now arrive at lunchtime.

There are problems in communication from renal units. The service is only given rough estimates of when people will be ready to be taken home. There are also a number of inappropriate bookings, for example, where ambulances are booked and it subsequently found that a car would be a more appropriate means of transport.

All renal patients are given transport, regardless of their level of mobility. The service is provided six days a week, although cover on a Saturday is limited as is confined to providing services to renal units in Wales.

None of the units to which WAS provides a service operates a zoning system, as described by LAS. There are also cross border journeys that would seem unnecessary, for example, patients travelling from Christleton and Broughton to Wrexham and from Connah’s Quay and Mold to Chester. The area served by WAS has expanded. Patients prefer to stay with a specific consultant than be repatriated to a local unit.

In regard to commissioning, there are separate contracts and SLAs with each trust. The renal service is one component of these broad contracts. Standards are also locally determined.

BACK FORWARD CONTENTS 44 8. Survey of English Ambulance Trusts

BACK FORWARD CONTENTS 45 Introduction

Throughout the time the Learning Set met, close contacts were maintained with local ambulance services. As described elsewhere in this report, on 9th September 2005 a listening event was held specifically targeted at the ambulance trusts that provide renal transport for people in Cheshire and Merseyside. Following this meeting, the Learning Set decided that more information was required on the activities of ambulance trusts throughout England, specifically around the application of eligibility criteria, charging and contractual arrangements. It was agreed that this could be best achieved through a survey of the 31 ambulance trusts in England.

Methodology

On 24th October 2005 correspondence was sent to the Chief Executives of the 31 ambulance trusts in England. A covering letter (see page 48) introduced the work of the Learning Set and established that the purpose of the inquiry was to seek information on eligibility criteria, charging and contractual arrangements for transport services for renal patients by means of a questionnaire. A copy of the questionnaire, replicated on page 49, was attached with the covering letter. A response was requested for 30th November 2005, with a reminder letter being sent out on 24th November 2005 to all trusts.

Results

Of the 31 trusts that were sent a questionnaire and a reminder letter, 20 (64.5%) returned a completed questionnaire. One trust returned a questionnaire without including their organisation’s name so could not be included in the results. The Learning Set considers this to be an excellent response and commends the trusts that participated in this work. Many of these trusts also included additional information, such as copies of contracts and service level agreements (SLAs) that have been used to enhance the knowledge of the Learning Set of this aspect of transport provision for renal patients. Nonetheless, a full response from all trusts was expected, given that this was a written request for information that, under the Freedom of Information Act 2000, should have received at least an acknowledgement of receipt.

Eligibility Criteria

In the first set of questions, trusts were asked if they operated eligibility criteria for non-emergency transport for renal patients. Of the 20 trusts who completed and returned a questionnaire, 12 (60%) stated that they did not operate eligibility criteria in respect of transport for renal patients. The remaining 8 trusts (40%) all operate eligibility criteria, this consists of the 4 trusts who answered ‘yes’ to this question as well as the 4 trusts who replied that although they did not operate eligibility criteria, but nonetheless stated that they worked to criteria that were set by another organisation, such as the commissioner of the service or the provider of renal services. For the purposes of this survey, given the phrasing of the question, these can be legitimately counted as operating to eligibility criteria.

BACK FORWARD CONTENTS 46 Charging for Transport

The second set of questions asked if trusts operated a charging regime for non-emergency transport for renal patients. The purpose of this question was to ascertain whether or not patients were charged for transport services. None of the 20 trusts (100%) that responded to this survey charged patients for the services they provided. In the supporting information provided by 4 trusts, it was clear that charges were made as part of contractual arrangements. These charges were often based on the mobility needs of the people conveyed, with additional charges being made for activity that was outside of the agreed contract.

Renal Specific SLA

The final two questions asked if the non-emergency transport services for renal patients were subject to agreed service level agreements (SLAs) or contractual arrangements. All but two of the trusts (90%) that responded to the questionnaire were part of such arrangements; one of the remaining trusts no longer provided renal transport services for their area whilst the other simply stated that they had no contractual arrangements. Of the 18 trusts that had contractual arrangements, 13 (72%) operated renal services as part of block contract arrangements that included other non-emergency patient transport services. Some of these trusts were nonetheless able to identify renal activity and set performance standards outside of the main SLA. Of the remaining trusts, 1 trust (6%) operated a mix of block contractual arrangements and service specific SLAs, whilst 4 (22%) had contracts or SLAs specifically tailored to the needs of renal transport provision.

Summary

Based upon the findings of this survey, the majority of ambulance trusts do not operate eligibility criteria for non-emergency transport for people accessing renal services. Of those trusts that do operate eligibility criteria, half have those criteria set for them by another organisation.

None of the respondent trusts passed on a charge for the transport service they provided to patients. Charges were included within the contractual arrangements for the service.

The majority of trusts who responded to the questionnaire had contractual arrangements with their commissioners. The majority of these were block contracts within which renal services formed a discrete part. Only 4 trusts had contracts or SLAs that were specifically tailored to the needs of renal transport provision.

BACK FORWARD CONTENTS 47 Cheshire and Merseyside NHS Specialised Services Commissioning Team Incorporating High Secure Mental Health Services*

1829 Building Countess of Chester Health Park Liverpool Road Chester CH2 1HJ Please Contact: Direct Line: 01244 650 307 Tel: 01244 650300 581Fax: 01244 650522 Fax: 01244 650522 Email: [email protected] Website: nww.cmssct.nhs.uk

Your Ref: Our Ref:

24th October 2005

Chief Executives, English Ambulance Trusts

Dear Colleague

Re: Department of Health Renal Transport Action Learning Set Last autumn, the Department of Health (DH) invited proposals to establish Action Learning Sets to address some of the key challenges set by the National Service Framework (NSF) for Renal Services. One of these challenges is the provision of effective, patient centred transport systems that enable people using renal services to undertake their treatment with minimum disturbance to their daily lives. A proposal to examine transport issues by the Cheshire and Merseyside Renal Strategy Group was accepted by the DH, which is also sponsoring five other Action Learning Sets.

As part of our programme of information gathering we are surveying all the ambulance trusts in England to find out whether they apply eligibility criteria and/or charging regimes in respect of the provision of transport services for renal patients. To assist us with this piece of work we would be grateful if you, or an appropriate colleague, could complete the attached questionnaire and return it to us by 30th November 2005. The findings of our work, including this survey, will be presented to the Department of Health in January 2006.

I apologise for the blanket nature of this communication, but such an approach is necessary when undertaking such a survey. Nonetheless, I can assure that we are looking forward to hearing from you and value any contribution that you can make to this work. Yours sincerely,

Simon Banks Specialised Commissioning Manager

* Commissioning High Secure Mental Health Services on behalf of the PCTs of Cheshire and Merseyside, Cumbria and Lancashire, and Greater Manchester BACK FORWARD CONTENTS 48 CHESHIRE AND MERSEYSIDE RENAL TRANSPORT ACTION LEARNING SET

AMBULANCE SERVICES QUESTIONNAIRE

Name:

Organisation:

1. Does your Trust operate eligibility criteria for non-emergency transport for renal patients? YES/NO (please delete as appropriate)

2. If you answered ‘yes’ to the previous question, please can you provide details of those criteria? Please attach or provide on a separate sheet.

3. Does your Trust operate a charging regime for non-emergency transport for renal patients? YES/NO (please delete as appropriate)

4. If you answered ‘yes’ to the previous question, please can you provide details of those criteria? Please attach or provide on a separate sheet.

5. Are these services arranged through agreed service level agreements or contractual arrangements? YES/NO (please delete as appropriate)

6. If you answered ‘yes’ to the previous question, please can you provide details of these arrangements? For example, it would be useful to know how many contracts you have, whether or not renal transport is dealt with separately or as part of a wider Patient Transport Service arrangements, activity levels, frequency of review, the quality standards to which they operate or any other information that you feel may be useful. Please attach or provide on a separate sheet.

Please return, by 30th November 2005, to:

Cheshire and Merseyside Renal Transport Action Learning Set, c/o Simon Banks, Cheshire and Merseyside Specialised Services Commissioning Team, 1829 Building, Countess of Chester Health Park, Liverpool Road, Chester, CH2 1HJ.

THANK YOU FOR YOUR ASSISTANCE

BACK FORWARD CONTENTS 49 Cheshire and Merseyside Renal Transport Action Learning Set

Ambulance Services Questionnaire – Summary of Results

Ambulance Trust Eligibility criteria Charging regime? Contractual arrangements?

Avon Yes – no additional No. Yes - Renal is covered under a block information provided. contract within a Service Level Agreement with the Acute Trust. We provide a service to an Acute Centre for all renal services i.e. dialysis, outpatients etc. We also provide services to three satellite units for dialysis. All our services operate 6 days per week and from 0800 hours in the morning until 2000 hours in the evening. From November 2004 to October 2005 we conveyed 100 stretchers, 1,300 wheelchairs, 2,000 C2, 35,800 C1 (total 39 300), this includes renal dialysis, renal outpatients and renal admissions.

Bedfordshire No. No. Yes - contractual information and provided, too lengthy to replicate. Hertfordshire Provides a service to one main unit and two satellites. Part of a consortium SLA with specific hours of operation and response times for renal services set out in appendix to main agreement.

Coventry and Yes - varies by No - Not direct to patient, Yes - 2 main renal providers - Warwickshire commissioner. but yes as part of University Hospital Birmingham and PCT/acute trust contracts. University Hospital Coventry and Charging by mobility Warwickshire. Reports can reflect category. renal cases separately. About 150,000 renal patients per year.

Cumbria Yes - the criteria applied No - Patients are not Yes - see answer to previous (by the two hospitals with charged for the service question. whom we undertake renal provided by the Trust. transport) are the normal Charges are incorporated We have only two contracts PTS criteria that the into contractual involving renal services and whilst patient must have a arrangements. The renal both are incorporated within the clinical need for transport we undertake main PTS SLAs we hold, both are ambulance transport. for both North and South monitored separately for the However, operating in the Cumbria are incorporated purposes of additional charging. extremely rural area of for charging purposes As already mentioned in previous

BACK FORWARD CONTENTS 50 Ambulance Trust Eligibility criteria Charging regime? Contractual arrangements?

Cumbria Cumbria, this is frequently into the main PTS Service answers, activity levels are cont... extended to patients who, Level Agreements we monitored by different criteria, one through lack of public have with North Cumbria by ‘patient journeys’ and ‘non transport, would not Acute and Morecambe contractual times/conditions’, the be able to travel for Bay Hospitals. Both other by ‘miles travelled’. treatment. This situation contracts cover S1 Monitoring results are reported to applies to both the North mobility only. The basics each Trust on a monthly basis and of the county (Cumberland applied within each SLA reviewed on a half yearly and Infirmary) and the South vary considerably. annual basis. Cumbria Ambulance (Westmorland General Within North Cumbria Service operate all renal transport to Hospital). Acute Hospitals, over and the same standards as those above standard charges applicable to all other PTS. raised per the SLA, we raise additional changes for any out of hours journeys we undertake i.e. weekends, evenings and Bank Holidays. Charges are also raised should patients require S2/stretcher transport, if we have to transport from outside our normal ‘catchment area’ and for occurrences such as MRSA patients if they have to travel alone.

The contract we have with Morecambe Bay Hospitals whilst included within the main PTS SLA, is all embracing but does have a mileage cap and the additional mileage rate we charge is set at a level which provides for a 25% element of S2 transport potentially being required. For this contract, each month the mileage utilised in respect of the renal service is monitored and reported and should an overrun be incurred, a charge is made at the end of the financial year.

Dorset No response received.

BACK FORWARD CONTENTS 51 Ambulance Trust Eligibility criteria Charging regime? Contractual arrangements?

East Anglian No response received.

East Midlands No response received.

Essex No - Commissioners agree No. Yes. Each of our PTS contracts have eligibility criteria. an agreed SLA which includes cost, quality control and volume of activity. Not able to provide further details as they are commercially in confidence.

Gloucestershire No - we have no criteria No. Yes - part of block contract. for patients attending We try to review arrangements actual dialysis treatment. regularly but over the last few years we have noticed an increase in the numbers of higher care/lower mobility patients attending for dialysis. We hope to have discussions soon with our main acute trust as the contract was only ever for transport walkers and not C2s and stretchers.

Greater No. No. Yes - in April 2004, as part of a Manchester process led by Bury PCT, GMAS moved from 23 separate Service Level Agreements (SLAs) for PTS to a single SLA for the whole of Greater Manchester. This is accompanied and complemented by a single set of quality standards. Copy of contractual arrangements supplied, too lengthy to replicate.

Hampshire No. No. No - with effect from 1/12/05 all renal transport by a private contractor in Hampshire.

Hereford and No response received. Worcester

Isle of Wight No. No - no charges passed Yes - copy of contractual on to patients. arrangements supplied, too lengthy to replicate.

Kent No. No. No.

BACK FORWARD CONTENTS 52 Ambulance Trust Eligibility criteria Charging regime? Contractual arrangements?

Lancashire No. No. Yes. LAS currently maintains 28 ‘Service Level Agreements’ with healthcare organisations throughout the region and beyond. We also provide renal transport to 8 units which are incorporated within existing SLAs and are therefore dealt with as part of the main core agreement. Activity levels as a Trust are in the region of 750,000 patient journeys per annum, of which approximately 57,000 are for renal patients representing 7.6% of the overall numbers. Quality levels vary between individual agreements, however they do not vary greatly within the contract themselves, in other words target quality performance levels for renal patients will generally be the same as for other patients. Service standards are reviewed on an annual basis, along with other variable such as activity levels.

Lincolnshire No. No. Yes. 5 SLAs separate from wider PTS contract serving 8 acute sites. SLAs are based on activity value. Cost price by SLA varies between each SLA and between each acute site. 6 month SLA reviews. Quality standards are monitored through Renal Quality Group.

London No response received.

Mersey No. No. Yes - renal SLAs with 13 centres.

North East No - As all renal patients No - No charges direct to Yes - contracts with Newcastle are booked by the units patients. Charges are Hospitals, Sunderland Hospitals involved, it is assumed made for additional (but now only satellite unit at that the booking has a resources when required, University Hospital Durham) and medical authority and we and where no provision South Tees Hospitals (but to date would not apply any has been formally agreed. no formal provision has been additional eligibility Currently run single organised for the transport to the criteria. All bookings are crewed vehicles for some North Tees Satellite Site). We have accepted. units, and where some transport dedicated to Renal additional demand is Patients at Newcastle Hospitals, required for double crews University Hospital Durham and (which would be over Darlington, but most other are dealt and above), these are with as part of the wider Patient charged. Transport Service arrangements. BACK FORWARD CONTENTS 53 Ambulance Trust Eligibility criteria Charging regime? Contractual arrangements?

Oxfordshire No - but the acute trusts No. Yes - the Non-Emergency Service do via their call centre. Level Agreement is between the Oxfordshire Ambulance NHS Trust and a consortium of commissioners. The consortium includes both acute trusts (i.e. Oxford Radcliffe NHS Trust and Nuffield Orthopaedic Centre NHS Trust), mental health trust and all PCTs. The service is provided via a centralised control centre and there are no dedicated crews to particular treatment centres or hospitals. Renal services are provided as part of the main contract.

Royal No. No. Yes. Renal is dealt with as one Berkshire of the Product Groups on the Berkshire Consortium Agreement. Renal starts at 0500 hours and runs through to 2200 hours. There are approximately 80 journeys per day. Zero tolerance on the inbound journey and a 30 minute allowance for the return.

South No. No. Yes - information provided, too Yorkshire lengthy to replicate. SLA is specific to renal transport service.

Staffordshire No response received.

Surrey No response received.

Sussex No response received.

Tees, East and North No response received. Yorkshire

Two Shires No response received.

West Country No - eligibility is No. Yes - West Country Ambulance determined by our Services NHS Trust currently has 25 commissioners who book PTS SLAs with NHS commissioners. the journeys. The transportation of renal patients forms part of our overall patient transport arrangement and no separate performance targets and/or activity levels are identified, albeit additional resources are made

BACK FORWARD CONTENTS 54 Ambulance Trust Eligibility criteria Charging regime? Contractual arrangements?

West Country available at weekends (by way of voluntary Cont... car drivers) to provide scheduled renal treatment patients with transport if required. All of our patient transport services operate to the same quality standards.

West Midlands No - WMAS does not No. Yes - WMAS has SLAs with two hospital operate eligibility criteria trusts that provide renal services, both specifically for renal resulted from competitive tendering and patients - the various form part of a ‘whole’ package. hospital trusts operate Activity levels are part of that package. a very loose one Quality standards for renal patients are themselves. more strict, for example, no patient should be late for their appointment whatever their appointment time and wherever they live. Whilst time waiting for return journeys is also a lot tighter than that for routine patients.

West No response received. Yorkshire

Wiltshire Yes - determined by No. Yes. Renal SLAs are either completely clinical staff at renal units. distinct or separately dealt with within a larger SLA. We transport Wiltshire residents to renal units at Portsmouth, Basingstoke and Totton under a dedicated SLA with Portsmouth Hospitals. We transport Wiltshire residents to the renal unit at the Great Western Hospital in Swindon under a dedicated SLA we have with Oxfordshire Ambulance Services NHS Trust who are sole contractors to the Oxford Radcliffe Hospitals Consortium which run this particular unit. Finally, we transport Wiltshire patients to the renal unit at the Royal United Hospital, Bath and to the Southmead Hospital in Bristol as part of a wider SLA with North Bristol Hospitals NHS Trust. Our policy is to have the eligibility of patients for transport set by the clinicians who know and deal with the patients on a regular basis. Our experience is that they are conscious of the cost of transport and only give NHS transport where it is absolutely necessary. Abort levels are very low on this type of transport. Looking into the future, the widening hours of renal dialysis treatment and general deterioration in the mobility of some patients is likely to push costs up if quality levels are to be maintained. BACK FORWARD CONTENTS 55 9. National Action Learning Conference (January 2006)

Sharing Ideas / Exploring Views

BACK FORWARD CONTENTS 56 Introduction

Over 150 people attended the “Implementing the Renal NSF: The Renal Action Learning Sets - sharing the work in progress” conference, held in January 2006.

The afternoon session involved people breaking into workshop groups to discuss the three main themes of: • Improving patient transport for people with chronic kidney disease • Prevention and management of chronic kidney disease in primary care • Palliative care for people with chronic kidney disease

This report is a briefing about the transport workshop.

Workshop challenges to participants

The conference had heard in the morning session of the work of the Cheshire and Merseyside, and County Durham and Tees Valley Action Learning Sets, which are both exploring ways to improve transport services for haemodialysis patients.

The two action learning sets posed the following challenges to the 50 delegates, who chose to join the Transport workshop:

Commissioning and contracts “How can we ensure that renal providers are involved in commissioning, and how can we fuse together the contract for transport services with the contract for renal services?”

Eligibility criteria “What would be the eligibility criteria for transport, and how do we make it consistent?”

Improving communication systems “What would be in an improved communication system between renal providers, transport providers, and patients?”

Engagement of the Private Sector / Public Transport “What opportunities are there to engage the private sector/public transport in the transport of renal patients?”

Charging for transport “What are the issues involved in charging some renal patients for transport to and from renal units?”

Workshop participants joined the group of their choice to discuss one of these challenges. Points from the discussions are detailed overleaf.

BACK FORWARD CONTENTS 57 CHALLENGE 1: Commissioning and contracts “How can we ensure that renal providers are involved in commissioning, and how can we fuse together the contract for transport services with the contract for renal services?”

• The group discussed the commissioning of renal services and transport and the fact that it tended to be completely separate from each other with different commissioning leads.

• The costing of transport was also discussed and the group considered whether the new Health Resource Groups (HRGs) and national tariff for dialysis would include an element for transport.

• It was felt that there needed to be a range of tariffs to reflect the different arrangements for transport with some patients not receiving NHS transport and making their own arrangements and others travelling by taxi or ambulance.

• It was felt that commissioning needed to be better integrated and a lot more explicit in terms of the standards and service expected. There also needed to be more robust monitoring of transport provision with appropriate sanctions for non compliance.

• Contracts for transport tended to be historical and not reflective of current arrangements or service needs. These needed to be revised and updated.

• It was also felt that renal transport needed to be separated out from general PTS and made a lot more explicit.

CHALLENGE 2: Eligibility criteria “What would be the eligibility criteria for transport, and how do we make it consistent?”

• It was felt that there needed to be national guidelines regarding eligibility criteria for transport which should address both the patient’s clinical condition and also more social criteria in order to be consistent.

• Carers should be encouraged to drive patients if they were able to and should be appropriately reimbursed. The group discussed the implementation of eligibility criteria for transport and whether this would free up resources which could be invested again into the service.

• There was a debate regarding a patient’s automatic right to free transport and whether eligibility criteria were required at all. The rights of patients who do not meet criteria also need to be taken into account and whether this would be a fair system.

BACK FORWARD CONTENTS 58 CHALLENGE 3: Improving communication systems “What would be in an improved communication system between renal providers, transport providers, and patients?”

• It was identified that there are currently inconsistencies in transport across the country depending on the policy of the local transport provider. Often there is no single coordination point for transport and no single point of contact resulting in more diffuse responsibility.

• It was noted that often it is the transport provider stating what service can be provided rather than a patient or commissioner shaping the transport requirements. It is often based upon historical contracts rather than service needs and is generally thought to be inflexible to changes in the patient’s condition.

• The organisational change resulting from the forthcoming merger of ambulance trusts and the impact this would have upon the service in the short term was recognised.

• The need to be honest with patients and carers regarding any difficulties was highlighted and it was felt important for all stakeholders involved in providing this service to be aware of each others perspectives.

• The fact that dialysis care is provided on a Monday to Saturday basis often into the evening but transport may be provided on a much more limited basis was acknowledged as a fundamental concern.

• Simple measures were identified which would address communication difficulties such as calling the patient 5 minutes before pick up or the transport provider receiving information regarding traffic delays en route.

• The importance of training transport providers in areas such as taking patients right to their door rather than simply dropping them off was emphasised.

• It was recognised that Agenda for Change will have an impact upon transport provision.

CHALLENGE 4: Engagement of the Private Sector / Public Transport “What opportunities are there to engage the private sector/public transport in the transport of renal patients?”

• Examples of private sector involvement in providing non-emergency patient transport for people accessing renal services were shared. There were some providers that were perceived as being good and examples of providers that were not so good.

• It was not felt important who provided the transport but what was important was to establish a robust transport system that involved multiple providers according to what they could offer to meet the differing needs of renal patients.

BACK FORWARD CONTENTS 59 • There was a need to establish eligibility criteria that allowed for the development of appropriate service models and the identification of the most appropriate means of transport for the individual user. They felt that this was an area in which strong commissioning was required.

• There is a need to have control over the transport system for renal patients, whoever provided the component parts of the services within that system. This control needed to extend to resource allocation/deployment within the system as well monitoring of outputs and outcomes.

• It was felt that much of the activity in renal transport provision was ‘hidden’ as it was part of general patient transport services. This also obscured the real costs of the provision of these services.

• Concerns about ‘swapping monopolies’ were raised, that is moving from a contractual arrangement that was exclusively with the public sector, such as an ambulance trust, to one that was exclusively with a private provider. The group felt that a partnership approach was required to develop a mixed economy of provision and transport that was appropriate to the needs of renal patients.

CHALLENGE 5: Charging for transport “What are the issues involved in charging some renal patients for transport to and from renal units?”

• The principle of charging some patients for transport was raised and it was accepted that a nominal amount may be appropriate for a small number of patients depending upon their circumstances. It was however agreed that a national approach needed to be adopted in order that this was consistent and that this would not apply to the majority of patients.

• It was felt that with an element of charging patients may have more choice. They could be offered opportunities to travel with carers or through schemes such as Ring and Ride and that for some patients, this may provide more flexibility. Offering travel vouchers, free and accessible car parking and reimbursement of carers all could facilitate this choice. It was felt that transport should offer a range of options and should not just be associated with ambulances.

• The key elements of a system is having national consistency, choice, a single point of coordination and having clear standards.

In summing up at the end of the day 3 key points were identified which would significantly improve renal transport on a national basis:

• The need for national consistency but local flexibility in key areas of transport such as commissioning, eligibility criteria and charging.

• The need for a plurality of providers with a range of transport options offering a choice of transport options.

• The need to modernise the commissioning of transport with greater integration of transport and renal services and with much clearer, stronger contracts. BACK FORWARD CONTENTS 60 10. Current profile of renal transport across Cheshire and Merseyside

BACK FORWARD CONTENTS 61 Ambulance Transport

At present, renal service providers fund locally specified ambulance patient transport services with Mersey Regional Ambulance Service (MRAS), through a number of independently commissioned service level agreements (SLAs). This is further supported through the usage of private sector transport providers, such as taxis and private hire/transport providers, again directly commissioned by service providers.

Currently, SLAs for the provision of renal transport are commissioned on a one year rolling basis only, affording no opportunity for investment in service provision or development of the service. Indeed, only one service provider currently commissions renal transport separately from “routine” patient transport, whilst another provider has failed to establish a formal SLA for their renal transport, relying on MRAS to act as “brokers” with local taxi companies. In addition to the lack of renal specific contracts, the level of activity contracted for within SLAs often does not match the actual activity undertaken.

Table 1 below illustrates the actual versus contracted activity issue for the period April - December 2005.

Table 1

Renal Service Contracted Actual Variation Provider activity activity Actual % Provider 1 5,297 12,421 7,124 135 Provider 2 28,668 41,528 12,860 45 Provider 3 3,486 5,441 1,955 56 Provider 4 3,210 4,354 1,144 36 Total 40,661 63,744 28,083 57

The practice of commissioning localised SLAs and the use of various and clearly separate providers, further reduces the opportunity for benefits derived from economies of scale and the co-ordination of patient activity through a single point of access.

As a consequence of this complexity and the fragmentation of current service provision, patient transport is often inefficient and incurs unnecessary expenditure.

Table 2 identifies the growth in actual activity by service provider and the relocation of treatment centres experienced since 2003, clearly demonstrating the move of renal dialysis treatment episodes from renal centre hospital based locations to satellite treatment centres. Significant growth has been experienced at locations situated within the Wirral area.

BACK FORWARD CONTENTS 62 Table 2 - Growth in renal patient journeys (2003 - 2006)

2003/04 2004/05 2005/06 03/04 – 05/06 Activity % Change Activity % Change Activity % Change % Change Royal Liverpool Hospital 33,654 - 33,938 0.84% 30,744 (9.41%) (8.65%) Arrowe Park Hospital 11,268 - 12,177 8.07% 15,664 28.64% 39.01% Broadgreen Hospital 7,384 - 12,039 63.04% 13,898 15.44% 88.22% Leighton Hospital 6,961 - 7,556 8.55% 8,714 15.33% 25.18% Steam Mill, Chester 5,305 - 5,602 5.60% 5,856 4.53% 10.39% Whiston Hospital 5,169 - 4,913 (4.95%) 3,552 (27.70%) (31.28%) Warrington Hospital 4,746 - 4,541 (4.32%) 4,092 (9.89%) (13.78%) Clatterbridge Hospital 4,584 - 7,151 56.00% 7,044 (1.50%) 53.66% Waterloo Day Unit 3,610 - 3,066 (15.07%) 2,424 (20.94%) (32.85%) Macclesfield General Hosp. 2,271 - 2,163 (4.76%) 2,010 (7.07%) (11.49%) Wythenshawe Hospital 1,077 - 1,811 68.15% 1,740 (3.92%) 61.56% MRI 835 - 716 (14.25%) 578 (19.27%) (30.78%) Aintree Hospital 0 - 247 - 4,062 1544.53% - Others 3 - 6 100.00% 4 (33.33%) 33.33% Total 86,867 - 95.926 10.43% 100,382 4.65% 15.56%

Table 3 identifies current levels of renal patient activity (by day of travel and by booking type) for the financial year 2005/06 (April - September) and projects the full year out-turn. (figures are based on patient journeys, i.e. an out patient episode will consist of two journeys, and are based on data provided by MRAS)

Table 3 - Current levels of renal patient activity

01 April 2005 to 30 September 2005 renal journeys by booking type Total Daily % Outpatient Discharge Transfer Admission Other Monday 9,797 19.52% 9,776 16 4 1 0 Tuesday 7,534 15.01% 7,490 41 1 0 2 Wednesday 9,073 18.08% 9,043 16 6 6 2 Thursday 7,216 14.38% 7,163 39 11 1 2 Friday 9,302 18.53% 9,281 18 2 1 0 Saturday 7,242 14.43% 7,209 33 0 0 0 Sunday 27 0.05% 26 0 0 1 0 49,988 163 24 10 6 Total 50,191 100.00% 99.6% (0.33%) (0.05%) (0.02%) (0.01%)

When compared to previous years (2003/04 and 2004/05) it becomes evident that not only are transport providers experiencing year on year growth, but also a significant change in the activity profile relating to the treatment days.

BACK FORWARD CONTENTS 63 2003/04 2004/05 2005/06 03/04 – 05/06 Activity % Change Activity % Change Activity % Change % Change Monday 14,679 - 17,708 20.63% 19,594 10.65% 33.48% Tuesday 14,659 - 14,738 0.54% 15,068 2.24% 2.79% Wednesday 14,256 - 16,801 17.85% 18,146 8.01% 27.29% Thursday 13,797 - 14,590 5.75% 14,432 (1.08%) 4.60% Friday 14,903 - 17,302 16.10% 18,604 7.53% 24.83% Saturday 13,632 - 14,156 3.84% 14,484 2.32% 6.25% Sunday 941 - 631 (32.94%) 54 (91.44%) (94.26%) Total 86,867 - 95.926 10.43% 100,382 4.65% 15.56%

Further analysis demonstrates that renal treatment episodes requiring transport are also compacting within the working day, again reducing the opportunities for efficiencies through spreading renal transport activity over a longer working day.

Analysis of the modifications by location highlights indicators that may be considered as contrary to the concept of the establishment of local satellite treatment centres.

• Regionally there has been a 4% increase in patients travelling in excess of 10 miles since 2003. • Leighton Hospital renal unit has shown a 15% increase in patients travelling in excess of 10 miles over the same reference period. • The Aintree Hospital renal unit was established in 2004. Currently 42% of renal patients who use the unit travel in excess of 10 miles to receive their treatment.

40% 35% 30% 25% 05 to 06 04 to 05 20% 03 to 04 15% 10% 5% 0% 0-1 1-5 5-10 10-30 30+ Miles

As a consequence of improvements in treatment regimes, patients can expect to dialyse for many years and this therefore increases the importance of effective patient transport.

Extended periods of treatment are usually associated with deterioration in patients’ mobility. The following graphs illustrate a deterioration in patient mobility, further compounding the increasing demands placed on the provision of renal transport.

BACK FORWARD CONTENTS 64 Renal Activity by Mobility 2004 - 2005 Renal Activity by Mobility 2005 - 2006

Two Man Lift 6,541 (6.8%) Two Man Lift 6,541 (9.1%) Walker Wheel Chair Walker 9,851 (10.3%) 79,458 (82.8) 79,458 (81.5) Wheel Chair 9,851 (9.2%) Stretcher 76 (0.1%) Stretcher 76 (0.2%)

The definition of these categories are as follows: C1 A patient who can walk, aided by one crew member, and can sit in a vehicle unsupervised. C2 A patient who either cannot walk at all, and has to be carried, OR who can walk aided by two members of Ambulance staff, and can sit in a vehicle, or may require assistance with oxygen therapy. C3 A patient who has to travel in the ambulance seated in a wheelchair, and only needs the assistance of one Ambulance staff in order to access and egress their home address or the treatment centre. C4 A patient who has to travel in the ambulance seated in a wheelchair and only needs the assistance of one Ambulance staff in order to access and egress their home address or the treatment centre. Stretcher A patient who cannot or must not walk at all and has to travel on a stretcher in an ambulance. Escort A person who must travel with the patient, without whom the patient cannot travel.

01 April 2005 to 30 September 2005 Renal Mobility by Hospital Total C1 C2 C3/4 Stretcher Royal Liverpool Hospital 30,744 70.54% 13.52% 15.55% 0.38% Arrowe Park Hospital 15,664 68.56% 11.45% 19.98% 0.00% Broadgreen Hospital 13,898 89.87% 7.09% 3.04% 0.00% Leighton Hospital 8,714 89.72% 5.42% 4.87% 0.00% Clatterbridge Hospital 7,044 95.23% 2.87% 1.90% 0.00% Steam Mill, Chester 5,856 94.74% 4.44% 0.82% 0.00% Whiston Hospital 3,552 86.88% 13.06% 0.06% 0.00% Warrington Hospital 4,092 97.51% 1.12% 1.37% 0.00% Waterloo Day Unit 2,424 100.00% 0.00% 0.00% 0.00% Macclesfield Hospital 2,010 84.78% 15.22% 0.00% 0.00% Wythenshawe Hospital 1,740 91.26% 5.75% 0.00% 2.99% Manchester Royal Infirmary 578 99.31% 0.00% 0.69% 0.00% Aintree Hospital 4,062 86.12% 7.73% 6.15% 0.00% Miscellaneous 4 0.00% 0.00% 100.00% 0.00% Total 100,382 81.54% 9.07% 9.22% 0.17%

BACK FORWARD CONTENTS 65 The new policy context for ambulance services in Cheshire and Merseyside

On 30th June 2005, the Department of Health published ‘Taking Healthcare to the Patient: Transforming NHS Ambulance Services’. Taking Healthcare to the Patient: Transforming NHS Ambulance Services will have a significant impact on how ambulance services are commissioned and provided over the next five years, effectively defining such services as integral to the provision not only of urgent care but also of some primary care and diagnostic services in the NHS. Over the next five years ambulance services, working with patients and the public, should:

• Improve the speed and quality of call handling, provide significantly more clinical advice to callers, and work in a more integrated way with partner organisations to ensure consistent telephone services for patients who need urgent care; • Provide and co-ordinate an increasing range of mobile healthcare services for patients who need urgent care; • Provide an increasing range of other services, e.g. in primary care, diagnostics and health promotion; • Continue to improve the speed and quality of service provided to patients with emergency care needs.

This vision is intended to deliver five main benefits for patients and their families, health and social care professionals and the NHS, these are that:

• patients will receive improved care and experience from consistently getting the right response, first time, in time, • fewer patients will face unnecessary A&E attendance and potentially unnecessary admission to hospital, • there will be greater job satisfaction for staff, • there will be better, more effective and efficient use of NHS resources, and • there will be improvements in self-care and health promotion.

In all there are seventy recommendations in Taking Healthcare to the Patient, one of which addresses the provision of Patient Transport Services (PTS). Recommendation 17 states that the operating hours for PTS “should be better structured around patient need”. The implementation of this recommendation would have significant benefits for accessing renal services, particularly dialysis at weekends or in the evening. It would also have implications for the operation and funding of PTS, which are not currently commissioned to provide the service levels that this recommendation suggests.

Recommendation 40 of Taking Healthcare to the Patient suggested that there should be a reduction in the number of ambulance trusts in England. This recommendation has been taken forward with the publication of Commissioning a Patient Led NHS by the Department of Health on 28th July 2005, which set out a timetable for the creation of new ambulance trusts by March 2007. Following this, a proposal to establish one ambulance trust serving the population of North West England (Cheshire, Cumbria, Greater Manchester, Lancashire and Merseyside) was consulted upon and this newly merged organisation is now in place. This development is significant in terms of the numbers of service level agreements and contracts the new trust will have for patient transport services in general and renal transport services specifically. There is a potential for renal transport services to be marginalised within such a large organisation. BACK FORWARD CONTENTS 66 The final policy development that has significance for ambulance services in Cheshire and Merseyside has been the publication of an independent review of the main provider of these services, Mersey Regional Ambulance Service NHS Trust (MRAS). In February 2005 Cheshire and Merseyside Primary Care Trusts (PCTs), Cheshire and Merseyside Strategic Health Authority (CMSHA) and MRAS commissioned an independent strategic review of ambulance services. The outcomes of the independent review, chaired by Professor Robert Tinston, were published on 28th July 2005 and have publicly available since this time. The review produced a total of 48 recommendations, which primarily addressed the provision of emergency paramedic services.

In developing a modernisation programme to address the actions suggested in the review, MRAS and the Cheshire and Merseyside Specialised Services Commissioning Team (CMSSCT), who lead the commissioning of the Trust on behalf of Cheshire and Merseyside PCTs, have looked also considered the role of non-emergency patient transport services. As a result, the proposed modernisation programme puts forward a number of actions to develop responsive, flexible and efficient Patient Transport Services (PTS) that will provide a range of appropriate options for access to healthcare, based upon commonly agreed criteria. Given the involvement of the CMSSCT and MRAS in the Learning Set it is anticipated that this work will take into account the specific needs of people accessing renal services.

BACK FORWARD CONTENTS 67 11. The development of renal services across Cheshire and Merseyside

BACK FORWARD CONTENTS 68 Overview

The Cheshire and Merseyside Renal Strategy Group produced a 5 year Strategic Framework for Renal and Transplantation services in June 2004 in order to respond to the key challenges presented by the National Service Framework for Renal Services. As a part of this Strategic Framework, a projection of the dialysis population was undertaken which indicated a significant growth in the number of renal dialysis patients, particularly amongst more elderly patients with additional medical conditions and this was consistent with the national picture of growth highlighted within the NSF. These patients are more likely to have mobility problems and are therefore more likely to require hospital PTS transport to access their dialysis treatment. The Strategic Framework outlined planning assumptions regarding the percentage of patients who may need hospital haemodialysis, home haemodialysis and peritoneal dialysis by 2008. The likely number of patients who would require dialysis in the future was calculated to 2008 and this was then extrapolated further in order that dialysis capacity requirements could be quantified for up to 10 years.

A subgroup of the Renal Strategy Group, the Haemodialysis Capacity Subgroup, was established to model through the factors which needed to be taken into account in developing plans for future haemodialysis facilities. This group reviewed demographic and epidemiological information, projected the growth in population and identified key recommendations for expansion of haemodialysis within a document ‘Final Recommendations Regarding Future Dialysis Facilities’ (September 2005)

Within Cheshire and Merseyside, there are now firm plans in place to significantly expand haemodialysis provision and this development of local satellite dialysis goes hand in hand with the review of transport facilities which was highlighted as a key issue within the report ‘Making the Connections’ by the Social Exclusion Unit.

It is estimated that at least two thirds of renal patients will require hospital transport and using the projection of patients, this indicates a significant growth in the transport requirements

Table 1 Estimated number of renal patients who will require hospital transport by 2010 in the Cheshire & Merseyside Renal Network. 2010 Total renal dialysis patients 1000 Planning assumption regarding number on hospital HD (74%) 740 Planning assumption regarding number expected to require transport 493** ** It is estimated that 2/3 rds patients will require support with transport.

The Renal Strategy Group agreed a standard for travelling times of 30 minutes for a single journey time from a patient’s home to their dialysis unit and this, together with the plans for dialysis expansion, will be used in reviewing local transport arrangements across Cheshire and Merseyside. In order to progress this, a local Renal Transport Project Implementation Group will be established with representation from all key stakeholders. This group will be responsible for taking the recommendations from the 2 national Renal Transport Action Learning Sets and other local work and to agree a plan for implementing these locally.

For further information on the development of renal services in Cheshire and Merseyside, please contact Jenny Scott, Head of Specialised Commissioning at [email protected]. BACK FORWARD CONTENTS 69 12. Renal transport and the use of information and communication technology

BACK FORWARD CONTENTS 70 Overview

The use of information and communication technology (ICT) in the planning and delivery of transport for people requiring urgent healthcare is increasingly common. The vast majority of Emergency Paramedic Services (EPS) in England use software than enable them to map demand against resources and create deployment patterns for emergency ambulances that increase their ability to meet designated response times. This practice is referred to as demand based cover (IPAS 2004b). Most EPS vehicles are equipped with a Global Positioning System (GPS) so that their control centres can identify their precise location and not only deploy them more appropriately but also more quickly. In the emergency ambulance vehicles Satellite Navigation (SatNav) acts as an aid to EPS crews in locating their destination, with mobile data terminals (MDT) taking clinical information direct into the cab. Finally, there is a rolling programme across England that involves the replacement of the ageing analogue radios with a new digital radio that is faster and more secure.

The picture in non-emergency Patient Transport Services (PTS) is somewhat different. The Learning Set has found that, at best, the potential benefits of ICT are not being fully realised in the planning and deployment of transport services for renal patients and, at worst, technology is not being used at all. Whilst acknowledging that the technologies referred to above are appropriate with the context in which they are being utilised and that they are costly, the Learning Set is of the view that transport providers, with the support of clinicians, patients and commissioners should explore the benefits that modern technology could bring to renal transport services.

The Learning Set believes that the use of ICT could improve the planning of transport provision. Existing service information and software packages can be used to identify clusters of patients and transport provided accordingly, this is known as ‘zoning’. As identified at our listening event with ambulance trusts on 9th September 2005, zoning can create resistance from service users, particularly if they have utilised services for a long time and have adapted their lifestyles to fit around existing dialysis slots. This said, as we found in our visit to Belfast City Hospital, by working together with clinical staff, the transport provider was able to address the concerns of service users about changes to their dialysis slots and did their best to match slots and routes with the lifestyle of the individual. Whilst the move to zoning caused some temporary difficulties it has delivered people to and from dialysis on time and by the most direct route. In our view the move to zoning in Belfast was successful as all stakeholders took responsibility for the change project, rather than abdicating responsibility to the transport provider alone.

Based on the evidence we have gathered, the Learning Set takes the view that technology can also improve service delivery by enhancing communication. One of the common issues raised with the Learning Set has been poor communication between patient, transport provider and the dialysis unit. Whilst we have found extensive evidence of the use of designated co-ordinators in renal units who liaise with the transport provider over the scheduling of transport, this was often undertaken by telephone or fax. There was also evidence of communication breakdowns and particular difficulties in contacting vehicle crews once they were en route. These problems appear to have been alleviated in Belfast through the deployment of appropriate ICT including hands free mobile phones and pagers, access to traffic cameras and GPS that improved communication between all parties. Through these arrangements contingencies can be put in place quickly when deviations occur from

BACK FORWARD CONTENTS 71 the original plan. Once again, these arrangements involve the efforts of all involved in the process of providing transport - the dialysis unit, the provider and the patient. All have a part to play and responsibilities to assume in making this system work.

The third area in which the Learning Set believes ICT can have a positive influence is on resource utilisation. As we witnessed in Belfast, there is clearly a direct benefit to the transport provider in using ICT to plan, schedule, monitor and deliver their transport service as it enables them to identify the most efficacious routes, avoid ‘hotspots’ and know exactly where each vehicle is located at any time. There are also clearly benefits for patients in knowing they have transport that is reliable, punctual and safe. Finally, as we saw in Belfast, improved scheduling and operational delivery of transport has enabled the Dialysis Unit to make better use of their available dialysis stations and to reduce the length of time the unit needs to be open for by 1 hour each day.

To summate, the Learning Set believes that there is a strong case for the increased use of ICT in the planning and provision of renal transport services. There are clear benefits to be derived from the appropriate deployment of ICT in terms of improved scheduling, communication and resource utilisation. Where ICT has been used effectively it has been as part of a whole systems change engaging the transport provider, clinicians and patients. In the most successful implementation we have seen, which was in Belfast, it also involved the commissioner of the service as the use of ICT was identified as an essential component of the service contract that was tendered as part of the procurement process.

BACK FORWARD CONTENTS 72 13. Hospital Travel Costs Scheme and other supporting information

Related reference documents:

Title: The Hospital Travel Costs Scheme – Guidance. Update - May 2005 File: DH_HospTravelCostsScheme.pdf Published by: Department of Health

Summary: This document gives updated guidance from the Department of Health on the financial help which is available under the Hospital Travel Costs Scheme to those patients who do not have a medical need for ambulance transport and who cannot meet the cost of travel to hospital.

Title: Help with Health Costs – HC11 Quick Guide. File: NHS_HelpwithHealthCosts.pdf Published by: Department of Health

Summary: This is a quick guide leaflet outlining key information relating to the help that is available in meeting health costs, including transport.

Title: New Tax Credits – Help with Health Costs – HC11 (TC) April 2003. File: NHS_TaxCredits_HC11(TC).pdf Published by: Department of Health

Summary: This is a summary guide to Tax Credits and how to obtain an NHS Tax Credit Exemption Certificate.

To access any of these related documents, simply click on the required file name .

BACK FORWARD CONTENTS 73 14. Access to renal services – Mersey Regional Ambulance Service

Related reference documents:

Title: Renal Transport Action Learning Set – Access to Renal Services File: RTALS_AccesstoRenalServices.pdf Published by: Cheshire and Merseyside Renal Services

Summary: This document was produced by Mersey Regional Ambulance Services Trust to help inform the Cheshire and Merseyside Renal Transport Action Learning Set. It outlines their vision of a patient centred renal transport service and how this might be practically implemented.

To access any of these related documents, simply click on the required file name.

BACK FORWARD CONTENTS 74 15. Stakeholder Listening Event Newsletter

Related reference documents:

Title: Renal Transport Action Learning Set – Listening Event Newsletter File: RTALS_ListeningEventNews.pdf Published by: Cheshire and Merseyside Renal Transport Action Learning Set

Summary: This newsletter was produced and widely circulated after the Learning Set held a Stakeholder Listening Event in May 2005. It captures the key points raised at that event which have helped to shape the final recommendations of the Learning Set.

To access any of these related documents, simply click on the required file name.

BACK FORWARD CONTENTS 75 16. Example Service Specifications and Contracts

Related reference documents: 16.1 Greater Manchester

16.2 Cheshire and Merseyside

16.3 West Midlands

16.4 Belfast

BACK FORWARD CONTENTS 76 16. Example Service Specifications and Contracts

Related reference documents: 16.1 Greater Manchester

Title: Provision of Non Emergency Patient Transport Services – Renal Haemodialysis Services File: GMRHS_NonEmergencyTrans.pdf Published by: Greater Manchester Renal Haemodialysis Services

Summary: This proposed specification outlines the important elements to be included within a contract for renal transport services and this is being used as a working draft in finalising the agreement between renal service providers and the North West Ambulance Trust.

Title: Haemodialysis File: GM_Haemodialysis_InfoSheet.pdf Published by: Central Manchester & Manchester Children’s University Hospitals NHS Trust

Summary: This leaflet was produced by Central Manchester and Manchester Children’s University Hospitals NHS Trust as a summary to be given to renal patients and transport providers to help them in understanding more about renal care and the importance of transport.

To access any of these related documents, simply click on the required file name.

BACK FORWARD CONTENTS 77 16. Example Service Specifications and Contracts

Related reference documents: 16.2 Cheshire and Merseyside

Title: Service Level Agreement for the Provision of a Non-emergency Patient Transport Service File: MRAS_SLA_RenalPatientTrans.pdf Published by: Mersey Regional Ambulance Service

Summary: This Service Level Agreement outlines the contract agreement between Mersey Regional Ambulance Services Trust and one of the main renal providers in Cheshire and Merseyside, Royal Liverpool and Broadgreen University Hospitals NHS Trust giving an example contract.

To access any of these related documents, simply click on the required file name.

BACK FORWARD CONTENTS 78 16. Example Service Specifications and Contracts

Related reference documents: 16.3 West Midlands

Title: Specification for Renal Patient Transport Services File: WestMids_Specification.pdf Published by: West Midlands Renal Network

Summary: This renal transport specification has been developed by the West Midlands Renal Network and provides an example of a renal specific transport specification.

To access any of these related documents, simply click on the required file name.

BACK FORWARD CONTENTS 79 16. Example Service Specifications and Contracts

Related reference documents: 16.4 Belfast

Title: Service Agreement for the Provision of Patient Transport File: BCH_Service Agreement_Trans.pdf Published by: Belfast City Hospital

Summary: This document outlines the service requirement as part of a contract agreement between Belfast City Hospital and a transport provider. This document forms part of the tender documentation for renal transport services.

Title: CF23 – Transportation of Renal Dialysis Patients File: RSS_SpecialCond_RenalTrans.pdf Published by: Regional Supplies Service

Summary: This gives an example of the tender documentation drawn up for the Belfast renal transport service.

Title: Conditions of Contract for the Supply of Services – Transportation of Renal Dialysis Patients File: NIH_SS_Conditions_RenalTran.pdf Published by: Northern Ireland Health & Social Services, Central Services Agency, Regional Supplies Service

Summary: This document forms part of the tender process for renal transport and gives an example of the issues to be addressed by potential providers.

To access any of these related documents, simply click on the required file name.

BACK FORWARD CONTENTS 80 17. What determines geographical variation in rates of acceptance onto renal replacement therapy in England?

Related reference documents:

Title: What determines geographical variation in rates of acceptance onto renal replacement therapy in England Author(s): Paul Roderick, Steve Clements, Nicole Stone, David Martin, Ian Diamond File: Renal_therapy_PRoderick.pdf Published by: Journal of Health Services Research & Policy – July 1999 ‘Reproduced from Journal of Health Services Research & Policy 1999;4:139-146, with permission from Royal Society of Medicine Press, London'.

Summary: This paper was published in 1999 by Dr Paul Roderick and colleagues and outlines the impact of increased travelling times on new dialysis patient acceptance rates.

To access any of these related documents, simply click on the required file name.

BACK FORWARD CONTENTS 81 18. Useful References

BACK FORWARD CONTENTS 82 Useful References

Useful references for transport information are outlined below.

Date Author Title Source/website/Hyperlink

2006 Department of Health National Services Framework for Renal Services. Working for Children and Young People. www.dh.gov.uk

2006 UK Renal Association Clinical Practice Guidelines for Haemodialysis. UK Renal Association 4th Edition. Working draft document. www.renal.org

2005 Department of Health Taking Healthcare to the Patient: Transforming NHS Ambulance Services. www.dh.gov.uk

2005 Department of Health Commissioning a Patient Led NHS. www.dh.gov.uk

2005 Department of Health The Hospital Travel Costs Scheme and other related patient cost information. www.dh.gov.uk

2005 Murray, A. and A Strategic Review of the Provision and Tinston, Prof. R. Commissioning of Ambulance Services across Cheshire and Merseyside, Central Cheshire Primary Care Trust, Cheshire and Merseyside Strategic Health Authority and Mersey Regional Available on request. Ambulance Service NHS Trust. Email Jenny Scott

2004 Department of Health The National Service Framework for Renal Services: Part One Dialysis and Transplantation. www.dh.gov.uk

2004 NHS Modernisation Improvement Partnership for Ambulance Agency Services (IPAS) Driving Change; Good Practice Guidelines for PCTs on Commissioning Arrangements for Emergency Ambulance Services and Non Emergency Patient Transport Services. www.wise.nhs.uk

2004 Cheshire and Strategic Framework for Renal and nww.cmssct.nhs.uk Merseyside Renal Transplantation (Full Document). (NB: NHS access only) Strategy Group Strategic Framework for Renal and nww.cmssct.nhs.uk Transplantation (Executive Summary). (NB: NHS access only)

2004 NHS Modernisation Improvement Partnership for Ambulance Agency Services (IPAS), Best Practice Guidelines on Ambulance Operations Management. www.modern.nhs.uk

2004 NHS Estates Facilities for renal services. Health Building www.nhsestates.gov.uk Note 53 Volume 1 Edition 2 (Via Knowledge and Information Satellite dialysis unit. Portal. Apply for membership by completing online form).

BACK FORWARD CONTENTS 83 Date Author Title Source/website/Hyperlink

2003 Social Exclusion Unit Making the Connections: Final Report on Transport and Social Exclusion. www.socialexclusionunit.gov.uk

2003 NHS Purchasing and Provision of non emergency patient transport Supply Agency services and non patient transport services – nww.pasa.nhs.uk service specific procurement guide. (NB: NHS access only)

2001 Audit Commission Going Places: Taking People to and from education, social services and healthcare. www.audit-commission.gov.uk

2001 Audit Commission Improving Non Emergency Patient Transport Services. www.audit-commission.gov.uk

1999 Roderick et al What determines geographical variation in rates of acceptance onto renal replacement J Health Service Res Policy Vol 4 therapy in England? No 3 July 1999; 139-146 ‘Reproduced from Journal of Health Services Research & Policy 1999;4:139-146, with permission from Royal Society of Medicine Press, London'.

1991 NHS Executive HSG (91)29 Ambulance and Other Patient Transport Services: Operation, Use and Performance Standards. www.dh.gov.uk

BACK FORWARD CONTENTS 84 Published by Cheshire and Merseyside Renal Action Learning Set

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