National Kidney Care Audit

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1 National Kidney Care Audit Patient Transport Survey Report Reporting on the 2008 survey Prepared in partnership with:

2 National Kidney Care National Kidney Care Audit Patient Transport Survey Report Reporting on the 2008 survey The NHS Information Centre (The NHS IC) for health and social care is working to make information more relevant and accessible to the public, regulators, health and social care professionals and policy makers, leading to improvements in knowledge and efficiency. The NHS IC is a special health authority that collects, analyses and distributes data to reduce the burden on frontline staff, releasing more time for direct care. Original Date of Publication: 2nd June 2009, Document Reference IC Revised Edition Date of Publication: 8th March 2010 Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved.

3 Contents Contents Foreword Acknowledgements i ii Introduction 1 How HD units are organised 2 Why an audit of patient transport is important 2 Commissioning arrangements for HD and for transport 3 What is known about HD transport quality provision 4 Scope of this audit 4 Methods 5 Coverage 6 Case Study 7 Results 8 Patient survey 8 Response rate 8 Age of respondents 10 Distance from home to the dialysis unit 12 What form of transport did the patients use? 16 Waiting and transit times 20 Waiting time to be picked up pre-dialysis 20 Journey time on the way in to dialysis 22 Arrival time on the dialysis unit 25 Waiting time to go on to dialysis machine 28 Waiting time to be picked up post-dialysis 31 Journey time for the homeward journey 34 Reasons for long journey times 37 Satisfaction ratings of patients 40 Do patients have to pay for their transport? 54 Commissioners /dialysis unit managers survey 57 Free text comments 60 Summary of results comparison against audit standards 62 Case Study 63 Discussion 64 Coverage and validity 64 Travelling and waiting times for patients 64 Commissioning and managing renal patient transport 65 Recommendations 66 References 67 Appendices 68 Appendix A 68 Participating units with response rates, grouped by SHA and equivalent and main unit Appendix B 79 The Implementation Group for the National Kidney Care Audit Patient Transport Appendix C 80 Organisational questionnaire sent to unit managers and commissioners Appendix D 82 Patient Questionnaire Appendix E 88 A worked example using the NHS iview online interactive analysis tool to compare a main unit to its satellite units Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved.

4 Foreword Foreword I welcome this national kidney care audit of transport. When I ask people receiving haemodialysis what aspect of their kidney care could be improved, transport is invariably top of the list. Indeed on the day of the survey I travelled to a kidney unit over 100 miles away from my home; one of the patients I talked to there had a longer journey time than I did for her regular dialysis treatment! We now have the data to demonstrate why that is so. For people with kidney disease who receive haemodialysis treatment in hospitals or satellite units, transport to and from their dialysis is a major quality of life issue. When the journey times are short, staff are friendly and service is reliable, the experience of care is considerably enhanced. For many people on dialysis the experience is the outcome. When pick-up times are erratic, delays frequent, service anonymous or journey times always excessively long, the impact on patients wellbeing and negative effect can be so marked to the extent that it becomes the most frustrating and concerning aspect of treatment. For some individuals it leads them to decline dialysis. Over two thirds of people receiving haemodialysis completed the survey. That s a remarkable figure. It reflects the importance of the subject. Patients in every kidney unit volunteered to help with the development of action plans to address the inadequacies of local transport provision. Commissioners of care and kidney unit staff themselves have all responded positively. The challenge now that transport problems are visible is for every kidney team to make improvements in this aspect of care a priority. Patient transport services, acute trusts and other providers of dialysis, commissioners and kidney patient associations all have responsibilities and need to work together. Part of the planning might be providing more home dialysis both home haemodialysis and peritoneal dialysis, provision of more local dialysis as well as more personal and responsive transport and parking arrangements at current units. Better transport will also help reduce our carbon footprint and help with the green nephrology agenda. I believe that the kidney community can rise to that challenge in doing so experience of care, sense of wellbeing and indeed the quality of haemodialysis treatment can be considerably improved. Dr Donal O Donoghue National Clinical Director for Kidney Care i Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved.

5 Acknowledgements Acknowledgements The National Kidney Care Audit is commissioned by the Healthcare Quality Improvement Partnership (HQIP). The audit is managed by The NHS Information Centre for health and social care (The NHS IC), who are working in partnership with the National Kidney Federation and the UK Renal Registry. There are two distinct areas of audit; the provision of timely and appropriate surgery for permanent vascular access and patient transport for haemodialysis patients. Throughout the development of the audit we have had invaluable support from patients and their representatives, clinical staff and other health professionals, IT and operational staff within The NHS IC, commissioners and patient transport provider representatives. We acknowledge how vital their input has been into ensuring that the audit has been successful. In particular, we would like to express thanks to all the patients, renal unit managers, clinical staff and commissioners who made this survey possible through their support and hard work. The input of the patient transport implementation group and the commitment of all those who have encouraged participation in the audit across England, Wales and Northern Ireland have also been essential. Our thanks also go to the patient transport clinical lead, Dr Alistair Chesser, who has drafted this report and to Dr Mike Sandell at The NHS Information Centre, who has produced the analysis it contains. Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved. ii

6 Introduction Introduction What haemodialysis involves Renal Replacement Therapy (RRT) takes the form either of dialysis or kidney transplantation. Not all patients are suitable for a kidney transplant (either because they are not physically well enough, there is no suitable donor kidney, or patient choice). These patients have dialysis. Dialysis takes the form either of peritoneal dialysis (PD) or haemodialysis (HD). Peritoneal dialysis is usually home based, and is not the subject of this report. HD can be performed at home, but far more often takes place in a dialysis unit. Most renal centres have a main unit, geographically part of a renal unit in a hospital with inpatient beds and other supporting services, and satellite unit(s), which may be based in associated hospitals or be free standing. Figure 1 Types of treatment for end stage renal disease. The numbers of patients in the UK in each group are shown (data calculated from the 2008 UK Renal Registry report 1 ) Haemodialysis patients who do not dialyse in their own homes (in the shaded boxes) are the subject of this audit. End stage kidney disease Kidney transplantation 21,132 Dialysis 24,352 Conservative management of kidney faliure Haemodialysis 19,706 Peritoneal dialysis 4,646 Homebased haemodialysis based haemodialysis 19,149 Main centre based haemodialysis 11,462 Satellite unit based haemodialysis 7,687 1 of 94 Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved.

7 Introduction How HD units are organised This audit covers England, Wales and Northern Ireland. There were 247 haemodialysis units in England, Wales and Northern Ireland at the time of this survey, including 12 specialist paediatric units. Many centres have satellite units, which are positioned either in associated hospitals or are free-standing. Satellite units are run by the main centre, with shared patients and staff. Appendix A gives the names and hierarchical relationships of these units. Haemodialysis patients usually have dialysis three times per week. Patients spend approximately four hours on dialysis, during which time they are physically attached to the dialysis machine (though there is variability in dialysis duration between patients). Dialysis can be arduous treatment for the patient, with many patients finding it fatiguing and feeling unwell for some time after the end of each treatment. Most patients have dialysis either on Monday, Wednesday and Friday or on Tuesday, Thursday and Saturday. Most dialysis units run 2-3 shifts of dialysis per day, so that patients dialyse either in the morning, afternoon or evening. Why an audit of patient transport is important The Renal National Service Framework (NSF) 2 states: Adequate transport is so important to people on haemodialysis that it plays a vital role in the formation of patient views and attitudes towards dialysis. Good transport systems can improve patient attendance and shorter travel times can improve patient cooperation if the dialysis treatment frequency needs to be increased. Efficient transport facilities reduce interruption of patients social lives and may therefore improve their quality of life. Renal NSF Part 1 Long travel and waiting times adversely affect quality of life for haemodialysis patients. There is support for this assertion in the literature. Moist et al 3 reported data from the DOPPS (Dialysis Outcomes and Practice Patterns Study) cohort, demonstrating that longer travel time was associated with a greater adjusted risk of death as well as with lower scores in quality of life questionnaires. There is also evidence that the prevalence of haemodialysis tends to fall with increasing travel time to the nearest dialysis unit. White et al 4 found that HD prevalence fell with increasing travel time from dialysis units in Wales. When a new HD unit was built in Aberystwyth, prevalence rose in the next two years from a significantly low level to one consistent with the national average. Other studies have demonstrated this association, with evidence of a falling prevalence rate of HD as travel time to the nearest unit exceeds approximately 30 minutes 5,6 The UK Renal Association Clinical Practice Guidelines 7 group have recognised the importance of travel time for HD patients, and state: Except in remote geographical areas the travel time to a haemodialysis facility should be less than 30 minutes or a haemodialysis facility should be located with 25 miles of the patients home. In inner city areas travel times over short distances may exceed 30 minutes at peak traffic flow periods during the day. Haemodialysis patients who require transport should be collected from home within 30 minutes of the allotted time and be collected to return home within 30 minutes of finishing dialysis. Renal Association Clinical Practice Guidelines for Haemodialysis 2007 There is recognition that achieving a travel time of less than 30 minutes is not always practical, especially in urban areas with traffic congestion. The optimal geographical placement of satellite units to minimise patient travelling time can help with this 8. There is increasing evidence that the majority of patients can receive their dialysis safely and efficiently in satellite units 9. It is not only distance and traffic congestion which dictate travel time for patients, but also the efficiency of the transport provider. The Scottish Cross Party Group on Kidney Disease 10 reported that 49 per cent of HD patients in Scotland had travel times of greater than 30 minutes despite the fact that only 10 per cent lived more than a 30 minute drive away from their local HD unit. Longer travel times were affected by journeys which picked up and dropped off other patients. It is important to remember that the total journey time for the patient includes not just the time in transit, but also the time waiting for the transport to arrive, and the time spent on the dialysis unit after Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved. 2 of 94

8 Introduction arrival waiting to go on the machine. Both the Renal Association 7 and the Scottish Cross Party report 10 recommend that waiting times should not exceed 30 minutes at any stage. Commissioning arrangements for HD and for transport Commissioning for dialysis is undertaken at SHA level by specialised commissioning groups, each representing their constituent Primary Care Trusts. Dialysis centres are paid per patient receiving dialysis, with no national tariff in place at the time of this audit and costs locally agreed. A significant proportion of haemodialysis patients are unable to transport themselves to and from dialysis. Commissioning of transport varies by SHA: in some areas the costs of patient transport are included in the fee paid for HD, and in others it is paid separately or as part of a larger contract between PCTs and the hospital Trust. Usually dialysis centres tender and commission their own transport for patients. Some may use the same transport provider as is used by other patients in that Trust, while others commission independently. Quality standards in transport provision are therefore the responsibility of the provider unit, overseen by the commissioning group, with much local variation in practice. Thus commissioning arrangements vary across the UK, and lines of accountability are often not clear. The Cheshire and Merseyside Action Learning Set 11 reported that in one SHA there were 35 separate Service Level Agreements (SLAs) for patient transport, and in only one of these was there a renal specific element though many of the others also involved HD transport. While commissioning is often disjointed and opaque, HD unit staff are usually the health care professionals who are in the front line for identifying problems with transport. Patients complain first to their dialysis nurse or doctor. Delays in transport can significantly impact on the daily routine of a HD unit. Delays for one patient can lead to delays for the patient due to dialyse next, and to renal unit staff having to work beyond the end of their shift times. There is a perception that fragmentation of commissioning arrangements and the dissociation between those responsible and those who are affected by the quality of the service lead to difficulty in setting and maintaining standards. The Audit Commission report on non-emergency patient transport (2001) 12 reported that there are no nationally agreed minimum quality standards for non-emergency patient transport. Standards are set by local hospital trusts and commissioners. In some cases hospital trusts and transport services continue to trade informally with little or no attention to written standards in service agreements. It specifically identified HD as an area where patient transport is important with the need for defined arrival times so that treatment is not interrupted by transport inadequacy. Amongst its recommendations were that commissioning bodies should treat appropriate provision of free transport as part of the package of health care, and patients views should be surveyed regularly. It also recommended that quality standards should be set after consultation with patients, and that these standards should be publicised locally. Contracts should encourage and reward achievement of standards. The NHS Purchasing and Supply Agency (PASA) 13 in its guide to procurers states that: You may wish to consider exploring the options of a dedicated (renal) service... because the need is entirely predictable, the necessary resource allocation is much easier to quantify. In the case of renal patients, the attendance will perhaps be three times per week for years if not for life. Given the frequency of the attendance and the degree of debilitation associated with the condition it is vital that these patient groups receive a totally reliable service with knowledgeable staff. A dedicated service will foster closer relationships between driver and patients which will not only allow for a greater degree of personal care at this point of the episode but which will also enhance the patient experience. 3 of 94 Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved.

9 Introduction What is known about HD transport quality provision The Pan-Thames Renal Audit Group (PTRAG) reported on an audit of HD transport in 2008 in London and the South East of England 14. It questioned all HD patients on one of their dialysis days about their most recent journey. It reported: A 65 per cent response rate (2787 patients) 57 per cent of the respondents used hospital provided transport 43 per cent of the respondents lived within five miles of the unit where they received dialysis 41 per cent of patients on hospital transport travelled for longer than 30 minutes, with 11 per cent travelling for longer than one hour 53 per cent of patients on hospital transport had commenced dialysis within 30 minutes of their arrival on the dialysis unit, but 14 per cent waited for more than one hour There was considerable variation in travel and waiting times between HD units, and within dialysis centres between main units and the satellite units. The PTRAG report concluded that units in London and the South East of England are failing to meet the Renal Association Guidelines for HD transport, while recognising that a 30 minute journey time is often unrealistic in London. It also identified a lack of monitoring and standards within Trusts, an absence of clear criteria on eligibility of hospital transport and poorly developed audits of patient satisfaction and collection of patients views. Scope of this audit The Patient Transport Section of the National Kidney Care Audit (NKCA) was commissioned to conduct two surveys of patient transport for HD patients. We report here the results of the first of these surveys, conducted in October The second survey is due to take place in October This audit was designed to address the following questions: 1. How does the provision of patient transport services for HD patients compare with the national average and the best performance nationally? 2. What is the variation in travel and waiting times for patients and how do these times compare with the standard of 30 minutes travel time each way? The survey was designed in two parts, a patient questionnaire in which patients views were captured directly with a paper form, and a separate electronic survey which was sent to HD unit managers and commissioners for HD services The standards against which the responses were measured were: Patients should not wait more than 30 minutes to be picked up from home prior to their dialysis session Travel times between home and the dialysis unit should be 30 minutes or less for patients (though with recognition that this may be hard to achieve in some areas) Patients should wait no longer than 30 minutes following the completion of dialysis to be picked up for their journey home The reasons for long journey times when appropriate, including measurement of journey distance and the number of other patients picked up or dropped off during the journey Patient should be satisfied with their transport arrangements There should be clear criteria for assessing eligibility for non-emergency transport for HD patients Patients should not be charged for their journeys to and from dialysis Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved. 4 of 94

10 Methods Methods An implementation group was set up and given responsibility for the audit. The group included a patient advocate, renal nurse, nephrologist, renal specialised commissioner, social worker, transport provider, information analyst and others. Members of the implementation group are listed in Appendix B. The audit consisted of two questionnaires. The first of these was sent to renal unit managers and commissioners, and is shown in Appendix C. The second was designed to ask patients about their most recent journey home from dialysis, and also about their journey in to the dialysis unit on the day of the audit. The questionnaire for patients is shown in Appendix D. Patients were asked questions about: What mode of transport they used for these journeys (hospital provided, private car, public transport, walking or taxi) Where they live in relation to the dialysis unit to enable distances of journeys to be calculated For those using hospital transport, the waiting time from scheduled pick-up time to when the transport set off (both pre and post dialysis) Transit time for the outward and homeward journeys Satisfaction with the service, globally and with respect to specific criteria (cleanliness, politeness of staff etc) The number of other patients picked up or dropped off during the journey Whether patients pay for their transport The questionnaire was piloted in August The pilot covered 1000 patients in main and satellite dialysis units in London and Liverpool (including one paediatric unit). Feedback from patients and staff following the pilot study led to some changes in the design of the final questionnaires. The patient questionnaire was given to all patients receiving dialysis in participating units on either 15 October or 16 October These dates were chosen because they captured weekday journeys, avoided school or national holidays, and were felt to be representative of average days. By distributing the questionnaire on two consecutive days all patients who had dialysis on three or more days per week (and many of the small number of patients who received dialysis only twice per week) in participating units were captured once. All dialysis units in England, Wales and Northern Ireland were invited to participate, including all paediatric units. Scotland undertook a seperate patient transport survey. Questionaire information was shared to enable comparative analysis to be undertaken with Scottish results. Dialysis unit staff were asked to encourage patients to complete the questionnaire. Written and verbal reassurance was given to all patients that their responses would be treated confidentially, anonymised and collated so that it would not be possible to trace replies back to individuals. Help was given by dialysis unit staff to those who requested it, including with translation when possible. All patients were assured that participation was voluntary and would not affect the care they were given. Staff at The NHS Information Centre attempted to identify the manager of each dialysis unit and the commissioning manager for dialysis transport in the SHA and PCT. These individuals were invited to complete the managers/commissioners questionnaire online at the same time as the paper patient questionnaire was sent out. Non-responders were sent follow up s to encourage responses. The questionnaires were collated and analysed by staff at The NHS Information Centre. A high level summary of the results is provided in this report. The results are available for NHS staff and patients to see and self-analyse using an interactive programme on the National Kidney Care Audit website: 5 of 94 Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved.

11 Methods Coverage At the time of the survey there were 247 separate locations for unit or satellite unit based dialysis in England, Wales and Northern Ireland. Five of these locations did not participate in the survey (see Table 1). Table 1 Non-participating HD units in England, Wales and Northern Ireland Dialysis unit Parent unit SHA Aintree University Hospital Liverpool Aintree University Hospital North West St George s Hospital London St George s Hospital London Stratford upon Avon Coventry Walsgrave Hospital West Midlands Whitnash Leamington Spa Coventry Walsgrave Hospital West Midlands Yeovil (Devon and Exeter) Exeter - Royal Devon and Exeter Hospital South West The remaining 242 locations are listed in Appendix A, along with their affiliation to their parent unit. In this report we amalgamate the responses of satellite units and main units, and report the results only at the level of 62 non-paediatric main units. Thus the results shown for one centre contain the amalgamated results from all of that centre s satellite units. It is recommended that interested parties study the more detailed breakdown of results by individual satellite unit and location which can be found on the website: there are clear differences in responses between different satellite units attached to the same main unit. Lack of space prevents publication of these detailed results in this report. s that submitted returns for ten or fewer patients have been excluded from this report, in order to ensure protection of patients anonymity. These excluded units include all but two of the 12 paediatric locations. The remaining two paediatric units have also been removed, as it was felt inappropriate to compare these two units to the non-paediatric units. There are plans to feed the information back to these smaller units in a manner which protects confidentiality compatible with information governance best practice. Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved. 6 of 94

12 Case Study Transport for kidney patients a personal perspective Roy Jones Haemodialysis patient Roy Jones, 66 travels five miles to a satellite unit in Northamptonshire for treatment and uses hospital transport. Without the service he would have to rely on public transport to reach the unit. I would have to get at least two buses and I m not good at walking, so I wouldn t be able to do it. The patient transport service is essential for me, said Roy, who has had kidney failure since the age of 25. Although Roy is generally happy with the transport service, a clearer approach to pick-up times, allocated drivers, and transport routes could help improve his experience. You never know what driver you have these days we always used to know and the driver never picks me up at the same time so I don t know when to be ready. he said. I can t understand the variation in times, even with the traffic, and the earlier we get to the unit the earlier we can get on with treatment. The patients at the unit all seem to moan about the same thing about having to wait. One woman does three hours on dialysis, but the man she travels with does four hours and she has to wait for him. If close dialysis times are sorted out for people who live close together, then we wouldn t have to wait as long to travel home. Roy, whose kidneys failed completely after he suffered a heat attack aged 50, thinks a better awareness of where patients live in relation to each other would not only shorten waiting times, but also patient journeys. One man at the unit lives five minutes away from me and I am supposed to go home with him, but this works for about two weeks and then I have to go back with another lady, even though she lives in another village much further away, he said. One day I was four minutes away from my house, but the driver turned off to the lady s village and then we had to double-back to take me home. I can be home about 45 minutes quicker if I am taken home with the man rather than the lady. The drivers keep changing so they don t understand, and people who don t live close to each other are put on the same transport. You can see that me and the man have the same postcode, so it should be simple. These are small things that are sorted out easily and people wouldn t complain. 7 of 94 Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved.

13 Results Patient survey Response rate The results contain data from 216 of the 242 locations that participated. (24 locations provided returns from ten or fewer patients and are not included, as are the remaining two paediatric units as discussed). The 216 adult units that are included cover 98.6 per cent of all the patient responses received.the overall response rate for non-paediatric units in England, Northern Ireland and Wales was 67.2 per cent, and for paediatric units was 81.2 per cent. Response rates varied by country (Figure 2), with the highest response rate in Northern Ireland. There was also significant variation in response rates by renal centre, reported in Figure 3 in 10 per cent bands in order to protect anonymity, with response rates varying from 20 per cent to 100 per cent. Figure 2 Response rate by country. Northern Ireland England Wales 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Response rate Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved. 8 of 94

14 Figure 3 Response rates by renal centre, grouped by country. Chelmsford - Broomfield Hospital Gloucester Royal Hospital Response rate ENGLAND 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Ipswich Hospital Southend Hospital Brighton - Royal Sussex County Hospital Cambridge - Addenbrooke's Hospital Carlisle - Cumberland Infirmary Kent & Canterbury Hospital Liverpool - Aintree University Hospital Newcastle - Freeman Hospital Salford - Hope Hospital Shrewsbury - Royal Shrewsbury Hospital Basildon Birmingham - Heartlands Hospital Derby City General Hospital Doncaster Royal Infirmary Exeter - Royal Devon and Exeter Hospital Leeds - St James's University Hospital - Ward 55 London - West London Renal and Transplant Centre - Auchi Acute Dialysis Preston - Royal Preston Hospital Stoke - University Hospital of North Staffordshire Sunderland Royal Hospital Birmingham - Queen Elizabeth Hospital Bristol - Southmead Hospital Coventry - Walsgrave Hospital Leicester General Hospital Liverpool - Royal Liverpool University Hospital London - King's College Hospital London - St Barts Hospital London - St Helier Hospital, Carshalton - South West Thames Renal & Transplantation Manchester Royal Infirmary Middlesbrough - The James Cook University Hospital Norfolk & Norwich University Hospital Oxford Radcliffe Hospital Reading - Royal Berkshire Hospital Truro - Royal Cornwall Hospital, Treliske Wirral - Arrowe Park Hospital Bradford - St Luke s Hospital Dudley - Russells Hall Hospital Hull Royal Infirmary London - Royal Free & Middlesex Hospital Portsmouth - Queen Alexandra Hospital Sheffield - Northern General Hospital Stevenage - The Lister Hospital Wolverhampton - New Cross Hospital York District General Hospital Colchester General Hospital Dorchester - Dorset County Hospital London - Guy s and St Thomas - 4 th Floor Dialysis Nottingham City Hospital Renal and Transplant Plymouth - Derriford Hospital 9 of 94 Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved.

15 Response rate NORTHERN IRELAND 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Belfast - Ulster Hospital Belfast City Hospital Newry - Daisy Hill Hospital Antrim Area Hospital Derry/Londonderry - Altnagelvin Hospital Omagh - Tyrone County Hospital WALES 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Rhyl - Glan Clwyd Hospital Swansea - Morriston Hospital Cardiff - University Hospital of Wales Wrexham - Maelor Hospital Bangor - Gwynedd Hospital Age of respondents There was considerable variation in the self-reported ages of the respondents (see Figure 4). Those respondents saying they were aged 65 years or older varied from as high as 74.0 per cent (Truro) to as low as 33.0 per cent (Barts and The London). Figure 4 Age distributions for renal centres, ordered by country and proportion of patients aged 65 years and above. ENGLAND Truro - Royal Cornwall Hospital, Treliske Dorchester - Dorset County Hospital Exeter - Royal Devon and Exeter Hospital Gloucester Royal Hospital Chelmsford - Broomfield Hospital Brighton - Royal Sussex County Hospital Carlisle - Cumberland Infirmary Plymouth - Derriford Hospital Reading - Royal Berkshire Hospital Norfolk & Norwich University Hospital Bristol - Southmead Hospital York District General Hospital London - St Helier Hospital, Carshalton - South West Thames Renal & Transplantation Cambridge - Addenbrooke's Hospital Stevenage - The Lister Hospital Portsmouth - Queen Alexandra Hospital Hull Royal Infirmary Southend Hospital Leeds - St James's University Hospital - Ward 55 Sheffield - Northern General Hospital Shrewsbury - Royal Shrewsbury Hospital Middlesbrough - The James Cook University Hospital Kent & Canterbury Hospital Oxford Radcliffe Hospital Derby City General Hospital Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved. 10 of 94

16 Birmingham - Heartlands Hospital Nottingham City Hospital Renal and Transplant Wolverhampton - New Cross Hospital Birmingham - Queen Elizabeth Hospital London - Guy s and St Thomas - 4 th Floor Dialysis London - West London Renal and Transplant Centre - Auchi Acute Dialysis Leicester General Hospital Colchester General Hospital Doncaster Royal Infirmary Stoke - University Hospital of North Staffordshire Wirral - Arrowe Park Hospital London - Royal Free & Middlesex Hospital Coventry - Walsgrave Hospital Basildon Bradford - St Luke s Hospital Dudley - Russells Hall Hospital Newcastle - Freeman Hospital Preston - Royal Preston Hospital London - King's College Hospital Liverpool - Royal Liverpool University Hospital Ipswich Hospital Salford - Hope Hospital Liverpool - Aintree University Hospital Manchester Royal Infirmary Sunderland Royal Hospital London - St Barts Hospital NORTHERN IRELAND Belfast - Ulster Hospital Antrim Area Hospital Omagh - Tyrone County Hospital Newry - Daisy Hill Hospital Derry/Londonderry - Altnagelvin Hospital Belfast City Hospital WALES Swansea - Morriston Hospital Cardiff - University Hospital of Wales Wrexham - Maelor Hospital Bangor - Gwynedd Hospital Rhyl - Glan Clwyd Hospital years years 65 years and above No response No useful data 11 of 94 Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved.

17 Distance from home to the dialysis unit Patients were asked their home postcode per cent of patients provided this information, in which case the distance as the crow flies from the patients home to the dialysis unit was calculated. 9.2 per cent of patients did not give a postcode but did provide an estimate of the distance to the unit from their home. The combined results are shown Figure per cent of respondents live within five miles of their dialysis unit, while 18.3 per cent live more than 10 miles away. Figure 5 Distribution of distances travelled. 70% 60% 50% Percentage of patients 40% 30% 20% 10% 0% No response 0-5 miles 6-10 miles miles miles Over 40 miles Don t know No useful data Figure 6 Distribution of distances travelled by renal centre, ordered by country and proportion of patients travelling 5 miles or less. ENGLAND Southend Hospital Birmingham - Heartlands Hospital Dudley - Russells Hall Hospital Wolverhampton - New Cross Hospital London - King's College Hospital Wirral - Arrowe Park Hospital London - West London Renal and Transplant Centre - Auchi Acute Dialysis Bradford - St Luke s Hospital London - St Barts Hospital Coventry - Walsgrave Hospital London - Royal Free & Middlesex Hospital Salford - Hope Hospital London - St Helier Hospital, Carshalton - South West Thames Renal & Transplantation Manchester Royal Infirmary Sunderland Royal Hospital Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved. 12 of 94

18 Stoke - University Hospital of North Staffordshire Liverpool - Royal Liverpool University Hospital Hull Royal Infirmary London - Guy s and St Thomas - 4 th Floor Dialysis Birmingham - Queen Elizabeth Hospital Reading - Royal Berkshire Hospital Nottingham City Hospital Renal and Transplant Leeds - St James's University Hospital - Ward 55 Bristol - Southmead Hospital Doncaster Royal Infirmary Ipswich Hospital Stevenage - The Lister Hospital Plymouth - Derriford Hospital Sheffield - Northern General Hospital Leicester General Hospital Basildon Portsmouth - Queen Alexandra Hospital Newcastle - Freeman Hospital Liverpool - Aintree University Hospital York District General Hospital Oxford Radcliffe Hospital Shrewsbury - Royal Shrewsbury Hospital Kent & Canterbury Hospital Preston - Royal Preston Hospital Brighton - Royal Sussex County Hospital Gloucester Royal Hospital Dorchester - Dorset County Hospital Derby City General Hospital Middlesbrough - The James Cook University Hospital Norfolk & Norwich University Hospital Carlisle - Cumberland Infirmary Chelmsford - Broomfield Hospital Exeter - Royal Devon and Exeter Hospital Truro - Royal Cornwall Hospital, Treliske Colchester General Hospital Cambridge - Addenbrooke's Hospital NORTHERN IRELAND Derry/Londonderry - Altnagelvin Hospital Belfast City Hospital Belfast - Ulster Hospital Antrim Area Hospital Newry - Daisy Hill Hospital Omagh - Tyrone County Hospital WALES Wrexham - Maelor Hospital Cardiff - University Hospital of Wales Swansea - Morriston Hospital Rhyl - Glan Clwyd Hospital Bangor - Gwynedd Hospital 0 to 5 miles 6 to 20 miles 21 miles and over Don t know No useful data No response 13 of 94 Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved.

19 Distance from the unit is only one factor in determining journey times. With the postcode information we were given, we calculated the percentage of patients in each unit who lived in an area classified as urban or rural. Of the 88.3 per cent of respondents who provided the necessary information, 82.5 per cent of these lived in an area classified as urban and 17.5 per cent in a rural area. Analysis by unit is shown in Figure 7. Those who lived in urban areas lived significantly closer (p<0.05) to their dialysis unit than those with rural addresses (Figure 8). Figure 7 Geoclassification of patients homes into urban or rural, by renal centre, ordered by country and proportion of patients in the urban classification. ENGLAND London - St Barts Hospital London - West London Renal and Transplant Centre - Auchi Acute Dialysis London - Royal Free & Middlesex Hospital Southend Hospital Wolverhampton - New Cross Hospital Salford - Hope Hospital Birmingham - Heartlands Hospital Liverpool - Aintree University Hospital London - King's College Hospital Wirral - Arrowe Park Hospital Liverpool - Royal Liverpool University Hospital Bradford - St Luke s Hospital Manchester Royal Infirmary London - St Helier Hospital, Carshalton - South West Thames Renal & Transplantation Basildon Stevenage - The Lister Hospital Coventry - Walsgrave Hospital Sunderland Royal Hospital Leeds - St James's University Hospital - Ward 55 Dudley - Russells Hall Hospital Birmingham - Queen Elizabeth Hospital London - Guy s and St Thomas - 4 th Floor Dialysis Brighton - Royal Sussex County Hospital Preston - Royal Preston Hospital Portsmouth - Queen Alexandra Hospital Stoke - University Hospital of North Staffordshire Doncaster Royal Infirmary Bristol - Southmead Hospital Sheffield - Northern General Hospital Derby City General Hospital Reading - Royal Berkshire Hospital Newcastle - Freeman Hospital Kent & Canterbury Hospital Nottingham City Hospital Renal and Transplant Gloucester Royal Hospital Leicester General Hospital Ipswich Hospital Middlesbrough - The James Cook University Hospital Hull Royal Infirmary Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved. 14 of 94

20 Oxford Radcliffe Hospital Colchester General Hospital Dorchester - Dorset County Hospital Plymouth - Derriford Hospital Shrewsbury - Royal Shrewsbury Hospital Exeter - Royal Devon and Exeter Hospital York District General Hospital Chelmsford - Broomfield Hospital Norfolk & Norwich University Hospital Cambridge - Addenbrooke's Hospital Carlisle - Cumberland Infirmary Truro - Royal Cornwall Hospital, Treliske NORTHERN IRELAND Belfast City Hospital Derry/Londonderry - Altnagelvin Hospital Belfast - Ulster Hospital Antrim Area Hospital Newry - Daisy Hill Hospital Omagh - Tyrone County Hospital WALES Cardiff - University Hospital of Wales Swansea - Morriston Hospital Rhyl - Glan Clwyd Hospital Wrexham - Maelor Hospital Bangor - Gwynedd Hospital Urban Rural No useful data Figure 8 Distribution of distances travelled by urban/rural classification. 80% 70% 60% 50% Percentage of patients 40% 30% 20% 10% 0% 0 to 5 miles 6 to 10 miles 11 to 20 miles Urban Distance band Rural 21 to 40 miles Over 40 miles 15 of 94 Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved.

21 What form of transport did the patients use? We asked patients what form of transport they used to get to and from their dialysis. Responses have been grouped together as follows: Hospital Arranged Transport - Hospital transport vehicle - Ambulance service vehicle - Car provided by the hospital - Taxi arranged by the hospital Public transport - All forms of public transport Private transport - Own car - Friends or family car - Taxi arranged by patient - Walk The distributions of responses are shown in Figure 9 (for the journey from home to dialysis) and Figure 10 (for the homeward journey). In total 20.1 per cent of patients (2,313 of 11,522) reported a different mode of transport for the journey home compared to the journey in (Figure 11), with a pattern of more patients making their own way into dialysis and relying on hospital transport to take them home. In total, 62.4 per cent of respondents used hospital arranged transport for the journey in, 3.5 per cent used public transport and 29.6 per cent used their own or self-arranged car (4.5 per cent of respondents provided uninterpretable responses). Figure 9 Distribution of transport categories by renal centre, for the journey to dialysis. ENGLAND Colchester General Hospital Preston - Royal Preston Hospital Hull Royal Infirmary Leeds - St James's University Hospital - Ward 55 Bradford - St Luke s Hospital Dorchester - Dorset County Hospital Truro - Royal Cornwall Hospital, Treliske Plymouth - Derriford Hospital Carlisle - Cumberland Infirmary Portsmouth - Queen Alexandra Hospital Middlesbrough - The James Cook University Hospital Sheffield - Northern General Hospital Oxford Radcliffe Hospital Manchester Royal Infirmary Brighton - Royal Sussex County Hospital Kent & Canterbury Hospital Cambridge - Addenbrooke's Hospital Stoke - University Hospital of North Staffordshire Exeter - Royal Devon and Exeter Hospital Bristol - Southmead Hospital York District General Hospital Nottingham City Hospital Renal and Transplant Chelmsford - Broomfield Hospital Newcastle - Freeman Hospital Gloucester Royal Hospital Wirral - Arrowe Park Hospital Norfolk & Norwich University Hospital Leicester General Hospital Sunderland Royal Hospital Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved. 16 of 94

22 Derby City General Hospital London - St Barts Hospital Salford - Hope Hospital Shrewsbury - Royal Shrewsbury Hospital Birmingham - Queen Elizabeth Hospital Wolverhampton - New Cross Hospital Coventry - Walsgrave Hospital London - West London Renal and Transplant Centre - Auchi Acute Dialysis Reading - Royal Berkshire Hospital Liverpool - Royal Liverpool University Hospital Doncaster Royal Infirmary London - St Helier Hospital, Carshalton - South West Thames Renal & Transplantation London - Royal Free & Middlesex Hospital Ipswich Hospital London - Guy s and St Thomas - 4 th Floor Dialysis Basildon Liverpool - Aintree University Hospital Birmingham - Heartlands Hospital London - King's College Hospital Dudley - Russells Hall Hospital Stevenage - The Lister Hospital Southend Hospital NORTHERN IRELAND Derry/Londonderry - Altnagelvin Hospital Omagh - Tyrone County Hospital Antrim Area Hospital Newry - Daisy Hill Hospital Belfast - Ulster Hospital Belfast City Hospital WALES Bangor - Gwynedd Hospital Cardiff - University Hospital of Wales Swansea - Morriston Hospital Rhyl - Glan Clwyd Hospital Wrexham - Maelor Hospital Hospital Arranged Transport Public Transport Private Transport No useful data 17 of 94 Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved.

23 Figure 10 Distribution of transport categories by renal centre, for the journey home. ENGLAND Preston - Royal Preston Hospital Colchester General Hospital Truro - Royal Cornwall Hospital, Treliske Carlisle - Cumberland Infirmary Hull Royal Infirmary Leeds - St James's University Hospital - Ward 55 Bradford - St Luke s Hospital Dorchester - Dorset County Hospital Portsmouth - Queen Alexandra Hospital Manchester Royal Infirmary Middlesbrough - The James Cook University Hospital Kent & Canterbury Hospital Plymouth - Derriford Hospital Oxford Radcliffe Hospital Sheffield - Northern General Hospital Newcastle - Freeman Hospital Exeter - Royal Devon and Exeter Hospital Brighton - Royal Sussex County Hospital Cambridge - Addenbrooke's Hospital York District General Hospital Bristol - Southmead Hospital Norfolk & Norwich University Hospital Stoke - University Hospital of North Staffordshire London - St Barts Hospital Gloucester Royal Hospital Chelmsford - Broomfield Hospital Nottingham City Hospital Renal and Transplant Leicester General Hospital Shrewsbury - Royal Shrewsbury Hospital Sunderland Royal Hospital Salford - Hope Hospital Birmingham - Queen Elizabeth Hospital Derby City General Hospital Wirral - Arrowe Park Hospital London - West London Renal and Transplant Centre - Auchi Acute Dialysis London - St Helier Hospital, Carshalton - South West Thames Renal & Transplantation Reading - Royal Berkshire Hospital Wolverhampton - New Cross Hospital Liverpool - Royal Liverpool University Hospital Coventry - Walsgrave Hospital London - Royal Free & Middlesex Hospital London - Guy s and St Thomas - 4 th Floor Dialysis Liverpool - Aintree University Hospital Basildon Ipswich Hospital Doncaster Royal Infirmary London - King's College Hospital Stevenage - The Lister Hospital Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved. 18 of 94

24 Birmingham - Heartlands Hospital Dudley - Russells Hall Hospital Southend Hospital NORTHERN IRELAND Omagh - Tyrone County Hospital Derry/Londonderry - Altnagelvin Hospital Antrim Area Hospital Newry - Daisy Hill Hospital Belfast - Ulster Hospital Belfast City Hospital WALES Bangor - Gwynedd Hospital Cardiff - University Hospital of Wales Swansea - Morriston Hospital Rhyl - Glan Clwyd Hospital Wrexham - Maelor Hospital Hospital Arranged Transport Public Transport Private Transport No useful data Figure 11 The change in the proportion of patients using each mode of transport, by country. Positive values indicate more people using the mode when travelling home than when travelling to dialysis, and negative values the converse. 3% 2% 1% Change in percentage 0% Hospital transport vehicle Ambulance service vehicle Car provided by the hospital Taxi arranged by the hospital Public transport Travelled in own car Friends or family car Taxi arranged by patient Walk Other No useful data No response -1% -2% -3% -4% Transport mode England Northern Ireland Wales 19 of 94 Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved.

25 Waiting and transit times Waiting time to be picked up pre-dialysis We asked patients how long after their scheduled pick-up time from home for the journey to dialysis their transport arrived. We include here only the 62.4 per cent of respondents who used hospital patient transport services for their journey to dialysis. 4.7 per cent had to wait for more than 30 minutes for their hospital arranged transport to arrive after their scheduled pick-up time. There was a wide variation in punctuality between different units: for those who said their transport arrived to pick them up within 10 minutes of the appointment time the range went from 17.2 per cent (Coventry) to 86.1 per cent (Derry/Londonderry). There was no obvious pattern in the responses with respect to rurality or the size of the dialysis unit. Figure 12 Waiting time to be picked up by hospital arranged transport for the journey to dialysis by renal centre, ordered by country and the proportion in the Within 10 minutes category. ENGLAND York District General Hospital Bradford - St Luke s Hospital Colchester General Hospital Sunderland Royal Hospital Preston - Royal Preston Hospital Middlesbrough - The James Cook University Hospital Shrewsbury - Royal Shrewsbury Hospital Truro - Royal Cornwall Hospital, Treliske Portsmouth - Queen Alexandra Hospital Kent & Canterbury Hospital Ipswich Hospital Chelmsford - Broomfield Hospital Doncaster Royal Infirmary Carlisle - Cumberland Infirmary Stoke - University Hospital of North Staffordshire Oxford Radcliffe Hospital Stevenage - The Lister Hospital Manchester Royal Infirmary Plymouth - Derriford Hospital Derby City General Hospital Dudley - Russells Hall Hospital Wirral - Arrowe Park Hospital London - West London Renal and Transplant Centre - Auchi Acute Dialysis Salford - Hope Hospital Birmingham - Heartlands Hospital Gloucester Royal Hospital Exeter - Royal Devon and Exeter Hospital Leeds - St James's University Hospital - Ward 55 Dorchester - Dorset County Hospital Hull Royal Infirmary Wolverhampton - New Cross Hospital Reading - Royal Berkshire Hospital Cambridge - Addenbrooke's Hospital London - Royal Free & Middlesex Hospital Sheffield - Northern General Hospital London - King's College Hospital Copyright 2010, The Health and Social Care Information Centre, National Kidney Care Audit Patient Transport Survey Report. All rights reserved. 20 of 94

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