Regional differences in the provision of adult renal dialysis services in the UK

Transcription

1 Q J Med 2005; 98: doi: /qjmed/hci023 Original papers Regional differences in the provision of adult renal dialysis services in the UK L. BLANK 1, J. PETERS 1, A. LUMSDON 2, D.J. O DONOGHUE 3, T.G. FEEST 4, J. SCOBLE 5 and J.P. WIGHT 1,6 and J. BRADLEY 7 From the 1 University of Sheffield, Sheffield, 2 The National Kidney Research Fund, 3 Renal Unit, Hope Hospital, Salford, 4 Richard Bright Renal Unit, Southmead Hospital, Bristol, 5 Department of Renal Medicine, Guys Hospital, London, 6 North Sheffield Primary Care Trust, Sheffield, and 7 Department of Renal Medicine, Addenbrooke s Hospital, Cambridge Received 9 July 2004 and in revised form 12 November 2004 Summary Background: Provision of renal dialysis varies between UK regions. Aim: To analyse these differences in provision and investigate their causes. Design: Questionnaire-based survey. Methods: A questionnaire was posted to all renal provider units and renal commissioning groups in the UK. Questions covered issues such as dialysis modalities and patient choice. Data were collected by telephone interview (or post in some cases) and analysed using SPSS. Results: All renal provider units in the UK responded. A full range of modalities was provided by the majority of units. Clear variations in the level and quality of dialysis provision were seen between the UK regions. These included variation Introduction Inequalities in health, and in use, need and access to health care, are key issues for government. Standards of care based on national service frameworks (NSFs) that meet NSF targets should start to redress the imbalance. With the launch of the renal NSF 1 (as well as NSFs for the elderly 2 in choice of dialysis modality, provision of highcost drugs, vascular access waiting times, number of support staff and availability of spare dialysis slots. Discussion: The considerable variation between UK regions in the provision of adult renal dialysis services cannot be entirely explained by age or ethnic variation, and is in part due to limited bed space, dialysis machines and support staff, as well as changes in commissioning arrangements. To meet the requirements of the renal national service framework in most regions, changes to policy and funding will be required, such that the relatively new commissioning groups implement more appropriate funding structures in closer dialogue with their provider units. and diabetes 3 ), renal disease, renal dialysis and transplantation specifically are in the spotlight. For renal disease, the need for dialysis is increasing as the population ages. Current increases in life expectancy are leading to higher need norms, due to increased numbers of elderly people. 3 The Address correspondence to Dr L. Blank, Section of Public Health, ScHARR, Regent Court, 30 Regent Street, Sheffield, S1 4DA. l.blank@sheffield.ac.uk! The Author Published by Oxford University Press on behalf of the Association of Physicians. All rights reserved. For Permissions, please journals.permissions@oupjournals.org

2 184 L. Blank et al. developing obesity epidemic 4 with its impact on the prevalence of type 2 diabetes and the associated complications of end-stage renal failure, will lead to an ongoing and increasing need for additional dialysis provision over the next decade. Both of these factors will lead to increased need across the UK. The third major factor is the higher incidence rates seen in people originating from the South Asian subcontinent, who are a relatively young population in the country. 5,6 As this population ages, the impact on resources will increase in the areas of the UK with a greater South Asian population. We report the current level of service with respect to dialysis, regional differences that currently exist in the UK, and some of the existing problems which will need to be addressed if the NSF targets are to be met. Methods Throughout this study, the term regions relates to the eight geographical Department of Health regions. An advisory group of commissioners, providers, patient representatives, renal organisations, and other interested parties was established to inform the research. The group met twice, and there was additional dialogue via telephone and . A questionnaire was designed to obtain information on the current situation for adults undertaking renal dialysis in the UK, without duplicating data already collected by the renal registry 7 and others. The questionnaire contained a set of core questions common to both commissioners and providers, plus additional questions specific to each. The questionnaire was posted to the clinical director in each renal provider unit; satellite units were not contacted separately, and the main provider unit was asked to provide data that incorporated their activity. The commissioner questionnaire was sent to a named person from each specialized commissioning group for renal services. The initial recipients, if inappropriate, were asked to pass the questionnaire to the relevant person. This was the first time that provider and commissioner views had been sought simultaneously. Responses were collected through pre-booked telephone interviews with the target person or a nominated representative from their institution. Where this was not possible, completion of a paper questionnaire was acceptable. The interviews were all conducted by the same researcher who was a member of the advisory group. The questionnaire was posted 3 weeks prior to the intended interview, enabling recipients to have pre-read the questions. Further telephone calls and s were made and messages left where initial contact failed. Information was stored and analysed using SPSS. Data entry was checked in-house, and to confirm accuracy, a copy of each person s response was posted back to them for validating. In three instances, corrections were made to the original data submitted. The data for all units were aggregated by region and analysed. Variation in dialysis provision between the UK regions was examined. Results Response rates Questionnaires were posted to the 71 provider units. Three cities containing two main units submitted combined data (Newcastle, Glasgow, and Leeds), resulting in a final 68 respondents. Questionnaires were also posted to an initial 62 named individuals identified as being involved in commissioning of renal services in the UK. Several of those initially contacted proved inappropriate, due to changes in jobs and responsibilities, or duplication of representation. Finally, appropriate contacts with responsibility within 51 renal commissioning groups were included. The final response rate was 100% for providers (n ¼ 68) and 82% for commissioners (n ¼ 41). The questionnaire was completed by telephone interview where possible, but 42 providers and 12 commissioners, when asked for a telephone interview, chose to post or their responses (mostly because of time constraints in their working schedules). Treatment Dialysis On 1 July 2002, people were receiving dialysis treatment for end-stage renal disease in a UK population of approximately 60 million (Table 1). All units had haemodialysis patients, however, in the previous year 18 units (27%) had had no home dialysis patients. Four of these units were located in the Eastern region, three in each of the South West and the Northern & Yorkshire, two in Northern Ireland and one each in London, the South East, the West Midlands, the North West, Wales, and Scotland. One provider unit in the North West of England had no patients on continuous ambulatory peritoneal dialysis (CAPD) or ambulatory peritoneal dialysis (APD). Two provider units in Southern England gave no information on peritoneal dialysis rates (on CAPD from one provider and for APD from another), suggesting they also had no PD patients.

3 Provision of dialysis 185 Table 1 Provision of dialysis by region Region Units Unit HD Home HD CAPD APD All dialyses % slots free Mean % dialysis 3/week Waiting transfer (% patients) Mean % on PD South East (0.17) 36 South West (0.07) 28 London (0.68) 32 Eastern (0.22) 27 West Midlands (0.14) 29 Trent (0.16) 33 Northern and Yorkshire (0.23) 25 North West (1.6) 34 Wales (0.29) 30 Scotland (0.06) 28 Northern Ireland Totals * 95.4* 75 (0.35*) 29.2* *Mean percentages. HD, home dialysis; CAPD, continuous ambulatory peritoneal dialysis; APD, ambulatory peritoneal dialysis. When asked about factors limiting their dialysis provision, most provider units said their dialysis capacity was limited by workforce, buildings and beds; notably all units in Wales, and for workforce limitation, all units in Northern Ireland and the South West. Although most units had a 3-year expansion plan, most also felt their plans were limited by the same factors (Table 2). The main reason given by the providers was a lack of funding, although many acknowledged a lack of space and facilities, as well as problems in recruiting and retaining staff as factors that constrained choices in modality offered to patients. Thus even if the commissioners were able to commission dialysis provision at a higher level, in many cases there would not be the space, equipment or staff to deal with any increase in patient numbers, as units are already running to capacity. Commissioners felt they were limited by budgetary restraints, and a few of those new to their jobs also felt limited by a lack of understanding of renal medicine. For the majority of haemodialysis patients, with the exception of those with good preservation of renal function, dialysis three times a week is the accepted standard of treatment. 7 On average, 95% of haemodialysis patients receive dialysis three times a week and most regions reach this average. In 26 units (38%), all patients dialyse three times a week. Regionally, nearly all patients in Scotland and London receive dialysis three times a week (99%), whereas fewer patients in Eastern (86%) and Northern Ireland (78%) do so (Table 1). Dialysing twice a week may also be a clinical or patient choice, as several provider units in these latter regions emphasized. Recombinant human erythropoietin (EPO) The drug recombinant human erythropoietin (EPO) is now widely used to treat anaemia, which is associated with chronic renal failure and long term haemodialysis. EPO increases blood haemoglobin concentration, which reduces fatigue and physical symptoms leading to improved quality of life and tolerance of exercise. The high cost of EPO means its prescription has massive financial implications; the cost may be met through GP or hospital prescribing budgets. All provider units had an agreed protocol for EPO prescribing, but its use was restricted in 20 units, mostly to post-operative prescription only. With the exception of one Scottish unit, these units were located throughout England. Regions with the most EPO restrictions were in the North (3 units in the North West and 4 in Northern & Yorkshire), Trent (3 units), and London (3 units). Vascular access provision, wait and staffing Vascular access surgery to create an arteriovenous fistula or graft, giving permanent access for peritoneal dialysis or haemodialysis, reduces morbidity and mortality, compared to using a catheter for dialysis. There are regional variations in the provision of vascular access and the related surgical procedures as well as the provision of dedicated surgeons and support staff.

4 186 L. Blank et al. Table 2 Renal provision: percentage of providers reporting service-limiting factors and expansion plans by region Region % (no.) reporting services limited by: % (no.) reporting expansion limited by: % (no.) reporting 3-year expansion plans for: Workforce Buildings Beds Workforce Buildings Beds Workforce Buildings Beds South East 40 (2) 60 (3) 80 (4) 0 40 (2) 20 (1) 40 (2) 100 (5) 100 (5) South West 100 (6) 50 (3) 83 (5) 83 (5) 50 (3) 83 (5) 100 (6) 83 (5) 100 (6) London 63 (5) 88 (7) 88 (7) 50 (4) 75 (6) 75 (6) 75 (6) 88 (7) 88 (7) Eastern 86 (6) 57 (4) 71 (5) 57 (4) 57 (4) 57 (4) 86 (6) 86 (6) 86 (6) West Midlands 57 (4) 57 (4) 86 (6) 57 (4) 14 (1) 28 (2) 86 (6) 100 (7) 100 (7) Trent 75 (3) 75 (3) 75 (3) 100 (4) 75 (3) 75 (3) 100 (4) 100 (4) 100 (4) Northern & Yorkshire 50 (4) 38 (3) 38 (3) 38 (3) 75 (6) 63 (5) 50 (4) 88 (7) 88 (7) North West 83 (5) 83 (5) 67 (4) 67 (4) 83 (5) 67 (4) 100 (6) 100 (6) 100 (6) Wales 100 (5) 100 (5) 100 (5) 80 (4) 100 (5) 100 (5) 60 (3) 60 (3) 80 (4) Scotland 67 (6) 67 (6) 78 (7) 67 (6) 67 (6) 67 (6) 78 (7) 78 (7) 78 (7) Northern Ireland 100 (3) 67 (2) 67 (2) 100 (3) 67 (2) 67 (2) 100 (3) 100 (3) 100 (3) Total 73 (49) 66 (45) 75 (96) 58 (41) 64 (43) 64 (43) 80 (53) 88 (60) 91 (62) Table 3 Provision of vascular access and surgical procedures by region (values rounded to nearest whole number) Region Mean % dialysing with arteriovenous fistula or graft Mean % with dedicated sessions, vascular access surgery Mean % with dedicated vascular access surgical staff Mean % with dedicated renal interventional radiologist Mean wait (weeks) for elective fistula surgery Mean number of vascular surgery sessions per week South East South West London Eastern West Midlands Trent Northern & Yorkshire North West Wales Scotland Northern Ireland Mean 69% 73% 71% 49% 14 weeks 2 sessions

5 Provision of dialysis 187 Regional variations also exist in the numbers dialysing with a fistula or graft, (worst London 59% vs. best North West/Trent 75%) However, the variation seen between individual units is greater (40 100% of patients). With the exception of London, England fares better than Scotland, Wales or Northern Ireland in vascular access provision (Table 3). The provision of dedicated vascular access surgery sessions (by a dedicated surgeon or other) also varies greatly, with all units in London and the North West providing dedicated sessions, but only 1 of 3 units in Northern Ireland. The time that patients are required to wait before receiving vascular access surgery also varies between regions. In all regions, mean waiting times were considerably above the 4 weeks recommended by the renal registry, 7 with Northern Ireland being close to ten times the recommended wait (Table 3). One reason highlighted for variation in numbers of patients dialysing with an arterio-venous fistula or graft, both in individual units and regionally, is the differing developments in practice being adopted in some areas. For example, one unit claimed to have high success rates using lines resulting in many patients no longer contemplating a graft (personal communication), however, this obviously does not explain the broad variation in waiting times for regions where vascular access surgery is the method of choice. Support staff Management of patients with renal disease requires a multidisciplinary team that includes dieticians, Table 4 Renal support staff by region Region Dieticians Pharmacists Social workers pharmacists, social workers, counsellors, occupational therapists and renal technicians. 8 In terms of the number of renal support staff, Northern Ireland units overall had most, with 43.6 whole-time equivalents (WTE) per 1000 patients. Scotland, Yorkshire and Humber and the South West all had 430 WTE per 1000 patients. In all other regions, the figure was close to 20 WTE per 1000 patients. Technicians, dieticians, social workers and pharmacists were provided by units in all regions (to varying degrees), but the provision of occupational therapists and counsellors was less consistent across units. This may be due in part to services being provided by differently designated staff, e.g. counselling provided by social workers (Table 4). Out-of-area treatment Patients with renal disease on regular haemodialysis who need to go away on business, for a holiday or for other domestic reasons, must continue to receive dialysis treatment regularly whilst they are away. However, most providers sometimes or always have problems in either transferring their patients to another unit (92.6%), or in accepting patients from another unit into theirs (91%) because of a lack of capacity. Those few units who never had a problem accepting temporary patients or finding temporary slots for their patients were broadly distributed throughout the English regions. On the day of survey completion (1 July 2002), 58% of units (n ¼ 39) had no staffed, functional, vacant haemodialysis slots. The 42% of units with spare slots available were fairly well distributed throughout the UK. The highest number of free Counsellors Occupational therapists Renal technicians South East South West London Eastern West Midlands Trent Northern & Yorkshire North West Wales Scotland Northern Ireland Overall mean Total Data are WTEs (whole-time equivalents)/1000 patients dialysed. Values rounded to one decimal place.

6 188 L. Blank et al. slots available were in the Northern and Yorkshire region (83 slots, 4.9% of the number of patients on dialysis), with a relatively large number also available in Scotland, Eastern England (34 in each case, 1.9 and 2.5% of the number of patients on dialysis respectively) and London (23 slots, 0.65% of the number of patients on dialysis). Few were in the South West (0.1% of the number of patients on dialysis); there were no free slots in Northern Ireland or the North West of England (Table 1). The number of patients awaiting transfer into the unit also varied by region, with the highest being the North West with 29 patients (1.65) of waiting transfer. No patients in Northern Ireland were awaiting transfer. Summary Overall, in regional terms service provision varied depending on the particular standard being measured. However, there are some trends; Scotland Table 5 Issue Summary of regional/national differences in dialysis provision does consistently well with each of the measures, with the exception of vascular access issues (and to some extent restrictions on EPO provision), although is it is rarely the best performing region. For the categories considered, the least limited service provision is provided by Northern Ireland (3 measures), Trent and Northern and Yorkshire (2 measures each). The most limited service provision for these factors was found in London, Eastern and the North West (2 measures each). Table 5 provides a means of ranking the regions for each measure to give an overall picture of service provision; it is not intended as a statistical comparison of regional service. Discussion There is considerable disparity in the renal services for dialysis delivered between provider units and between geographical regions. This is seen across Least limited service provision Most limited service provision Home haemodialysis (units with no provision) Trent (0) Eastern (4) Northern & Yorkshire (3) South West (3) Capacity restrictions (units limited by buildings services or Northern and Wales (100%) beds: average %) Yorkshire (42%) South West (92%) Haemodialysis 3 week (% patients receiving HD 3 week) London (99%) Eastern (86%) Scotland (99%) Northern Ireland (78%) All other regions 495% EPO (number of units with prescribing restrictions) Wales (0) Northern and Yorkshire (4) Northern Ireland (0) North West (3) Scotland (1) Trent (3) London (3) Vascular access (% patients with permanent vascular access) North West (75%) London (59%) Trent (75%) Northern & Yorkshire (72%) Eastern (70%) Support staff (WTE per 1000 patients) Northern Ireland (43.6) London (21.7) South East (21.8) Eastern (22.1) Wales (22.9) Free slots (% of available) Northern & Yorkshire (4.8%) Northern Ireland (0%) Eastern (2.5%) North West (0%) Scotland (1.9%) South West (0.1%) Ability to accept new patients (number of patients waiting Northern Ireland 0 North West (29, 1.6%) for transfer, % patients) Scotland (1, 0.06%) London (24, 0.68%) South West (1, 0.07%) The least limited and most limited provisions in each category begin each list, with other close comparators shown for completeness. EPO, recombinant human erythropoietin; WTE, whole-time equivalent.

7 Provision of dialysis 189 many components of renal care including bed provision, range and choice of modalities available, frequency of haemodialysis, arteriovenous fistula or graft surgery availability, and staffing across all specialities. One reason, but not the only one, for variation seen in numbers of patients treated by provider units, will be the variation in patient need. The prevalence of renal disease is higher in some ethnic minority groups, particularly in South Asian and African-Caribbean patients. 7 Consequently, need for dialysis, and numbers on dialysis, should be higher in those areas of the UK with higher proportions or absolute numbers of residents from these groups, e.g. West Midlands. While the regional boundaries used by ONS5 do not completely match those used in this survey, the data can be used to make a crude comparisons between current levels of renal service delivery with need related to ethnic variation. The East Midlands (Trent), West Midlands and North East (part of Northern and Yorkshire) have relatively high percentages of Asian ethnic populations, and London has a higher percentage of African- Caribbean people compared to the rest of the UK 9. The numbers on dialysis were higher for these regions at the time of the survey. Elderly populations and those with high levels of diabetes (also linked to higher rates in some ethnic minority populations) will also place a greater demand on renal services. However, regionally there is little variation between age groups, with the exception of London, where the population is younger compared to the rest of the UK. 9 Age therefore is unlikely to have a marked effect on the variation in dialysis provision between the regions. Obesity, and its link to diabetes, is more prevalent in deprived areas, 10 and the increasing trends in obesity levels suggest that deprivation, with ethnicity and age, could become a future marker for more increased demand on renal services. However, these demographic variations cannot account fully for regional variation in dialysis provision, suggesting that in some regions the gaps between need for services and the level of dialysis provided, and variations in the type of service provided are larger than in others. Similarly, population variation can only explain the differences in provision of dialysis capacity per region, it makes no impact on the variations seen in the quality of service and level of patient choice between the regions. In the same survey, 13 considerable variation in commissioning practice was reported, and this will contribute to some of the differences in services consistently seen between regions, and as a result, previous policies and practices. Provision of choice of treatment is important in allowing patients with renal failure to receive the most suitable care. Overall, most units include all modalities, with one exception: home haemodialysis. Provision should change following the National Institute for Clinical Excellence s recommendation that end-stage kidney disease patients who are suitable for home dialysis 11 should be offered the choice between haemodialysis at home or in hospital, irrespective of where they live. 12 Other major differences lie within the area of support staff. In this survey, because of a lack of commissioned support staff, a provider stated they have resorted to soft money to fund their social worker(s) and occupational therapist(s). 8 In another case, it was reported that local politics required all social workers to be based in the community. 13 That provider unit covered social work issues with a renal support worker, who also covered the occupational health aspects. The question asked of providers referred to numbers of posts, but actual provision may be lower than reported, as some posts may not currently be filled. However the findings are not dissimilar to those reported by the British Renal Society. 8 The Renal Association (2001) 14 have recommended that: (i) at least 67% of patients presenting within three months of dialysis should start haemodialysis with a usable native arteriovenous fistula; (ii) at least 80% of prevalent haemodialysis patients should be dialysed using a native arteriovenous fistula; and (iii) no patient already requiring dialysis should wait more than four weeks for fistula construction, including those who present late. None of the regions reached this standard at the time of the survey, and in some cases the waiting time for surgery was up to ten times that recommended. In Scotland, there is a different ethos as a result of the geographical constraints imposed; for example, it was stated that in some cases patients could not be turned away from a unit, because of the large distances between units and the impracticality of travelling to the next nearest unit. 13 There is also a relatively small population and more uniform ethnicity, and so the incidence of renal failure is more manageable at present. Scottish patients are more likely to be treated in wards with enough staff and beds, but they may face lengthy journeys to their closest unit, and are less likely to be in receipt of such treatment options as vascular access surgery or high-cost drugs. The questionnaire did not set out to address other potential parameters of service quality such as efficacy of dialysis, rates of complications, quality

8 190 L. Blank et al. of life and referrals for transplantation, but some of these issues are now being addressed in a subsequent survey. This paper has highlighted the regional difference in the quantity and quality of dialysis provision across the UK. The variation can be partially explained by variation in need determined by demography, but is also likely to represent a disparity in purchasing services by commissioners. While levels of provision of dialysis services are reasonable overall, there is considerable variation in provision of dialysis and its associated treatments, required procedures and staff support levels between the regions. Part One of the NSF for renal disease 1 focuses on dialysis and transplant, and sets five standards regarding patient centred service, preparation and choice, elective dialysis access surgery, dialysis and transplantation. It is welcomed, as meeting these standards would help to iron out most of the regional variations highlighted in this survey, and result in equality of provision of appropriate care for all patients with end-stage renal failure, wherever they live in the UK. However, in most regions, changes to policy and funding will be required, such that the relatively new commissioning groups 15 implement more appropriate funding structures in closer dialogue with their provider units. To achieve this, some regions will need more change than others before the standards can be met. Acknowledgements The authors acknowledge the valuable contribution made to this research by other members of the Advisory Group: Mr Charles Cockburn, Government Relations Advisor, The National Kidney Research Fund and Kidney Alliance; Professor John Feehally, Professor of Renal Medicine and Consultant Nephrologist, Leicester General Hospital; Professor David Kerr, Vice- President, The National Kidney Research Fund; Mrs Beverley Matthews, Renal and Transplant Project Lead, West Midlands Specialised Services Agency; Mr Paul Maubach, Head of Specialised Services, West Midlands Specialised Services Agency; Mr Gordon Nicholas, Chairman, The National Kidney Federation; Dr Paul Stevens, Consultant Nephrologist and Head of Department, Kent and Canterbury Hospital. References 1. Department of Health. The National Service Framework for Renal Services. Part One: Dialysis and Transplantation. London, Department of Health, Department of Health. National Service Framework for Diabetes: Standards. London, Department of Health, Department of Health. National Service Framework for the Elderly. London, Department of Health, Department of Health. Annual report of the Chief Medical Officer [ annualreport2003/contents.htm] 5. Roderick P, Clements S, Diamond I, Storkey M, Raleigh VS. Estimating demand for renal replacement therapy in Greater London: the impact of demographic trends in ethnic minority populations. Health Trends 1998; 30: Lightstone E. Preventing Kidney Disease: The Ethnic Challenge. The National Kidney Research Fund, 2001: Ansell D, Feest T, eds. UK Renal Registry Report Bristol, UK Renal Registry, 2000: British Renal Society. The Renal Team: A multi-professional Renal Workforce Plan for Adults and Children with Renal Disease. British Renal Society, ONS Resident population by ethnic group and age. [ 10. Cancer Plan. London, Department of Health, [ Effectiveness and cost-effectiveness of home versus hospital or satellite unit haemodialysis for people with end stage renal failure. NHS R&D HTA Programme Report, April National Institute for Clinical Excellence. Guidance on home compared with hospital haemodialysis for patients with end stage renal failure. London, NICE, 2002: Peters J, et al. Renal Services for Dialysis: Commissioner and Provider Perspectives. The National Kidney Research Fund. 2002:92. [ 14. Ansell D, Feest T., eds. UK Renal Registry Report Bristol, UK Renal Registry, 2001: Department of Health. Commissioning Arrangements in the New NHS. Review into Commissioning Specialised Services. London, Department of Health, 2002.