bedtime reading: generic choice models for long term conditions

People with kidney disease expect and want greater control over their care and more personalised services. They want control of the things that matter most to them – what treatment and what care they receive, who provides it and where. I think most of us would agree with that statement and would also agree that the “choice agenda” is often framed around elective care – choice of hospital for outpatient visit or choice of hospital for orthopaedic procedure. The situation is much more complex in long term conditions and this short report helps to illustrate how a collaborative approach to care planning between healthcare professionals and the patients can identify a range of options tailored to suit the individual. The document is aimed at commissioners as much as providers and emphasises the central role commissioning has in improving the quality of services for patients.

January update 2008

The Prime Minister put kidney disease at the centre of the vascular triad of coronary heart disease, chronic kidney disease and diabetes in his first major speech on the NHS. Listen to Gordon Brown’s 7 January interview on Radio 4 here (8.00-8.30 slot). The PM also announced plans to introduce abdominal aortic aneurism screening as part of the focus on vascular control.

The following weekend the debate about presumed consent, backed by the Chief Medical Officer, Sir Liam Donaldson in his summer report on the state of the nations health, resurfaced in the run up to the publication of the Donor Task Force report “Organs for Transplants” that was accepted in full by the government.

This unprecedented focus on the kidney and kidney disease follows hard on the heels of inclusion of dialysis capacity as a key priority in the operating framework of the NHS for 2008. Timely initiation of renal replacement therapy remains a concern for many patients in many units. Our systems do not always ensure pre-emptive transplant listing, choice of the full range of dialysis options or community based dialysis. Delays in starting dialysis and even talk of the clinically unacceptable practice of twice weekly haemodialysis, is all too common. Building sufficient dialysis capacity remains a key goal for the coming year. I am working closely with Strategic Health Authorities on this mater and reviewing planning assumptions with Regional Commissioning Groups and networks.

Progress on detection of early kidney disease continues. The visibility of CKD brought about by the introduction of systematic estimated GFR reporting has resulted in 3% of the adult population being identified and placed on kidney disease registers in the first year of operation. We know from recent studies that the expected prevalence is closer to 8% and that practice level information shows a large variation which can only be explained by under detection. General practice has done extremely well from a standing start. The data now identifies the practices and PCTs where support and education are most needed.

So is early identification adding value? That’s actually a complex question – yes registration is the first component of a chronic disease management programme but “disease labelling” carries its own risk. Benefits accrue from interventions that alter the natural history, reduce risks or improved experience of a condition – in kidney disease achieving good blood pressure control is perhaps the most important surrogate for better outcomes. The overwhelming majority of those on primary care CKD registers, greater than 95%, are being recalled to have their blood pressures checked but only in about 60% of people with kidney disease is the achieved blood pressure less than 140/85. The clinical target is of course less than 130/80 so we have a way to go!

Progress on other fronts includes introduction of 18 week pathways for CKD and live donor transplantation, publication of the action learning sets reports on the year before replacement therapy, transitional care between paediatric and adult services and acute kidney injury, establishment of working groups on dialysis away from base unit and supportive and palliative care.

The recent announcements and current work streams provides a platform on which to make further progress over the coming 12 months. If you would like to get involved in any of these initiatives please do contact me at donal.o’donoghue@srft.nhs.uk

bedtime reading: quality of life of caregivers and patients on peritoneal dialysis

Quality of life of caregivers and patients on peritoneal dialysis
Stanley Lin-sun Fan, Insara Sathick, Khadija McKitty and Sally Punzalan

NDT Advance Access published online on January 8, 2008
Nephrology Dialysis Transplantation, doi:10.1093/ndt/gfm830

"Peritoneal dialysis is the archetypal home-based therapy and is often favoured by patients. However, as patients with end-stage renal failure become more elderly, with more co-morbidity, their dependence on carers to provide physical, emotional and logistical support increases. The effect of this chronic burden has not been systematically studied. We have prospectively studied patients with end-stage renal failure starting peritoneal dialysis and their carers over a 1-year period."

Read the full abstract here
link to NDT online here

Patient Transport Services

The Department of Health has recently updated the guidance for eligibility criteria for patient transport services.

Over the past few months several individuals have contacted me with concerns about proposals to withdraw or charge for PTS for people receiving maintenance haemodialysis. In response a reference to frequency of travel as one of the eligibility criteria that was not included in the guidance published by the Department of Health in Summer 2007 has now been inserted (see page 7 para 7).

David Nicholson, Chief Executive of the NHS, England emphasised the importance of this revision by including it in his regular update to NHS CEOs underlining that the frequency of travel is important and must be considered when assessing a patients’ medical need for transportation.

Clearly, people receiving regular maintenance haemodialysis are a unique group and I trust that this guidance will ensure that they continue to receive appropriate transport services.

Transport for haemodialysis will be the focus of one of the Healthcare Commission national renal audits due to commence later this year.

Your experience matters

Your experience matters is a collaborative project that the NHS Institute for Innovation and Improvement is conducting for the head and neck cancer service at Luton & Dunstable Hospital NHS Trust. What’s this got to do with the kidney I hear you say – well read on. The project is testing an evidence based design model to create new methods of understanding experience and for bringing patients, carers and staff together to turn those experiences into real improvement actions.

Experience based design (EBD) is a way of capturing and understanding how users actually feel each time they come into contact with the process, a product, or even a building or environment. It then uses that knowledge to redesign all or part of the process in a way that maximises the positive emotional response of the user.

What’s special about EBD as an improvement tool in healthcare, however, is that it focuses strongly on capturing and understanding patients’ and carers’ experience, not simply their view of the process – for instance the speed and efficiency at which they travelled through the system. Instead, EBD deliberately draws out the subjective, personal feelings a patient or carer experiences at crucial points in the pathway.

It does this by:

• Encouraging and supporting patients and carers to “tell their stories”.
• Using these stories to pinpoint those parts of the care pathway where the user’s experience is most powerfully shaped (the touch points).
• Working with patients, carers and front line staff to redesign these experiences rather than just systems and processes.

In kidney care the experience often is the outcome. Experience based design will help kidney care teams, patients and carers to focus on designing experiences not just processes, systems or the built environment. It's a lot more innovative than traditional process mapping techniques. The approach would almost certainly benefit kidney care. If you want to find out how, read more at: Experience based design: from redesigning the system around the around to co-designing services with the patient (Paul Bates and Glenn Robert)

Q & A : Waiting time for renal replacement therapy

Q: Dear Donal, I thought to seek your opinion on the fact that whilst waiting time initiatives are all over the NHS, one of the most critical waiting times in Nephrology, namely that for initiation of RRT, is not so regulated.

We all run low clearance clinics and are well aware that the time from reaching an eGFR of 10 ml/min and the initiation of RRT is variable; some times unacceptably long resulting in patients starting RRT in some centres with eGFR around 5 rather than 10. We all know the consequences of late initiation of RRT. Lack of resources would be better addressed if pressure from the centre/NHS stipulated a given, acceptable, time frame. Your reflection on that important issue would be appreciated. Regards, Prof Meguid El Nahas, PhD, FRCP, Professor of Nephrology, Sheffield Kidney Institute, Northern General Hospital

A: Dear Meguid, Thank you for raising this extremely important issue. The outcomes for people starting replacement therapy are clearly related to the quality of care in the years and months before transplantation or dialysis and the appropriate timing of initiating replacement therapy. Clearly, if pre-emptive transplantation is possible that is the best option. Advanced kidney disease must be a frightening time for many patients, many things are happening and there are a lot of uncertainties. It is certainly a time of high morbidity and one of the risks is that preparation for or initiation of dialysis is inadequate or delayed.

Action Learning Sets to consider this part of the patient pathway and to examine the model of care ran in Cambridge lead by Dr John Bradley (Consultant Renal Physician, Addenbrookes) and York lead by and Colin Jones (Consultant Renal Physician, York) over the last year and a detailed report of the findings will be published soon. In addition, Simon Watson (who is a specialised Registrar in Renal Medicine) has been seconded to the NHS Institute for Innovation and Improvement where he is undertaking a Quality Improvement Fellowship, part of which is examining the systems in place for professionals to manage “the golden year” and in addition to consider the health literacy and information needs of people at this stage of the pathway. I think Simon’s findings would be of interest to the whole kidney community. “Living with Kidney Disease – what you should know”, the DVD recently produced by Kidney Research UK and the British Renal Society (under the direction of Steve Smith, (Consultant Renal Physician, Birmingham Heartlands) and Bridget Ward (patient carer)) with Big Lottery funding should go a long way to informing patients and their families about the treatment options. I would like to see a situation where there is sufficient capacity in the system and sufficient support for patients that so treatment can be tailored to the needs of the individual and delivered in a safe, efficient and timely manner. There are a number of other projects that I have recently initiated that may also help, at least in part, in achieving that state – the 18 week pathway for kidney disease and reviewing and updating capacity planning at national and renal network levels.

Getting the tariff “right” for dialysis is also important. You are probably aware that there is a renal PbR Project being lead by Bev Matthews (Renal Network Manager, West Midlands Renal Network) focussed on that issue. We have 17 Trusts engaged in that exercise and hope to provide robust costs from these Trusts for the statutory financial returns that form the basis of the reference costs used in the NHS. I see this payment by results exercise as the first phase of clinical directors, finance directors and commissioners working together to develop robust costing for other aspects of Stage 5 CKD management – particularly preparation in “the year before” replacement therapy and supportive and palliative care. In financial terms transplantation is managed separately.

The importance and power of accurate data can’t over stated and here we, in many units at least, need to code better and ensure our hospital statistics truly represent the activity we and our teams undertake.

The 18 week pathways may provide a mechanism for tracking the waiting time for dialysis – declining renal function and preparation for transplantation, conservative management or dialysis is a complex process and it would be naive to think that high level 18 week commissioning pathways could capture all the detail. If however they highlight the blockages and provide a means of measuring delay they will highlight the resources that need to be put in place to fulfil the NHS target of timely and appropriate initiation of dialysis.

I have always admired, perhaps even envied, Sheffield’s low crash lander rate, high transplant listing rate and forward thinking dialysis capacity planning – the fact that you feel such pressures and that the patients you manage can’t always start dialysis at the “right” time underlines that this is a national problem.

Organs for transplant: 50% increase in organ donation within 5 years

The Secretary of State announced that the government would fully fund the recommendations of the Organ Donation Task Force which has set us the goal of a 50% increase in organ donation in the UK within 5 years. This would result in an additional 1200 transplants a year and have a major positive impact on the landscape for people approaching or with end stage renal failure and their families.

The report proposes a radical shift from existing arrangements, recommending recruitment of around 100 extra transplant donor coordinators to work with hospitals and guide and support bereaved families through the donation process. These extra staff and existing coordinators are to be employed centrally by NHS Blood and Transplant rather than individual Trusts which will mean and end to varied employment, training and practices across the country.

In addition, a new strengthened network of organ retrieval teams is to be established to work closely with critical care teams to improve organ retrieval.

The report has 14 recommendations in total which include encouraging the whole NHS to make organ donation a usual rather than unusual event by developing local organ donation policies with identified clinical donor leads or donation committees in each Acute Trust. Clinical directors and other members of the renal team, particularly in non-transplanting Trusts, have an important role to play in promoting this change in culture.

I have congratulated Elisabeth Buggins (Chair of the Organ Donation Task Force) on an excellent peice of work. Elisabeth said "90% of the UK population supports organ donation and transplantation in principal, but too many people are dying because donation too often, is not made possible in practice.

The UK has one of the lowest rates of donation in Europe and it was in recognition of this that the Task Force was created.

This work has been amongst the most rewarding in my professional life. I am grateful to fellow Task Force members for the dedication and commitment they have shown as well as the international advisors that have helped us develop the recommendations."

This is a great opportunity to save more lives every year. I hope the NHS and the general public will seize it with both hands. Please play your part.

Health Inequalities

“The availability of good medical care tends to vary inversely with the need for the population served” Julian Tudor Hart: “The Inverse Care law” The Lancet 1971.

The NHS Confederation hosted a seminar on “Inverse Care and Health Inequalities” shortly before Christmas. They have produced a neat little report “In Sickness and In Health” available at www.nhsconfed.org/publications. It has some fascinating information in case studies. Did you know for instance that Manchester men have the lowest life expectancy in England at just 72.5 years? Men in Kensington and Chelsea can expect to live until they are 82.2 years old.

The seminar chaired by Nigel Edwards (Director for Policy at the NHS Confederation) looked at what research and information is already available in an attempt to identify the gaps and set some key priorities for action.

There is a lot known in general terms and I was particularly interested in the discussions about the reasoning behind the Quality and Outcomes Framework on the widening health inequalities gap.

Turning to kidney disease, we know that socially deprived patients have a higher incidence of CKD. In the UK, individuals living in the most socially deprived areas have a 45% increased risk of CKD compared to those living in the most affluent areas. Furthermore, CKD progresses more rapidly in socially deprived patients. Fergus Caskey (Consultant Renal Physician in Bristol), has looked into this from a UK and an international perspective and tells me that the social class effect is thought to be mediated through many intermediate factors working at the individual level (for example low birth weight, smoking, obesity, poor complaints, diabetes and hypertension) or area level (for example poor primary care services and inadequate access to secondary care).

Individuals from socially deprived areas commencing replacement therapy in the UK also tend to be younger, have more diabetic end stage kidney disease and have more co-morbid illnesses than their more affluent counterparts. They are also more likely to be referred late to a nephrologist and therefore have less time to be physically and mentally prepared.

Individuals from socially deprived areas in England are less likely to receive a pre-emptive transplant, than those from affluent areas. They remain less likely to have been transplanted 90 days and one year after commencing replacement therapy. Scottish data has also shown patients from socially deprived areas take longer to be registered on the national transplant waiting list than those from affluent areas.

Tackling the health inequalities of chronic kidney disease will be hard and will require a joint approach across all agencies locally. There are still unacceptable variations in the health status within and between our different communities.

“We shouldn’t just sit back and wait for someone else to do something”, Dr Sam Ramiah, Director of Public Health at Walsall PCT, “In Sickness and In Health” The NHS Confederation, 2007.