Wednesday, 27 October 2010

Growth rate slows to single figures

The rate of increase in recorded prevalence of Chronic Kidney Disease (CKD) has fallen below 10 percent in the UK for the first time since the introduction of CKD registers across primary care as part of the Quality and Outcomes Framework, the pay for performance scheme for General Practice, in 2006.
Figures released from the Information Centre last week showed that 1,817,871 in England, that’s 4.3% of the adult population, are now identified and registered as having CKD. This is an increase of 78,428 people since last year or a 5% increase overall in the diagnosed prevalence of CKD.

Detection and recording of CKD remain lower in London at just over 2% compared to the other regions in the country.

As in previous years the PCT and practice level information revealed most about the local organisation of care. For instance, in the North East, in Newcastle, the all age prevalence is over 5.5% compared to about 2.8% in South Tyneside: and in the North West, Blackpool and North Lancashire again stand out as examples of good practice but for instance Bolton and Liverpool have made steady progress from their low 2006 baselines. Milton Keynes is still coming in low at 1.5%. When one considers that the true prevalence is probably somewhere between 6.5 and 8.5 % - that’s a lot of missing people at risk of Stroke, Heart attack and Kidney Failure!!

Have a look at/download your own local data from the Information Centre.

Tuesday, 26 October 2010

Q & A: Minimising long term complications, mental and physical

Q: As the number of dialysis patients increases year on year with some patients now dialysing for many years, what plans are afoot to tackle the resulting complications both physical and mental.

A: Thank you for raising the issue of the health and mental wellbeing of people on dialysis. You are quite right about the numbers of people on dialysis continuing to rise year on year. Most people on dialysis are not currently transplant listed and they will therefore be on long term dialysis for the rest of their lives. Such patients often have a number of additional medical problems over and above the fact that their kidneys have failed. Indeed, co-existing heart disease or blood vessel disease is often the reason individuals are deemed unsuitable for transplantation.

The quality of life for people on dialysis is influenced by a range of factors including physical health, mental wellbeing, dietary and fluid restrictions, psycho-social issues, transport and the ability to dialyse away from their base unit or home. The Renal National Service Framework describes a vision for the empowerment, support, care and treatment of children, young people and adults with kidney disease to optimise patient experience and outcomes. It has a set of standards, quality indicators and good practice markers that must be achieved to make world class kidney care a reality.

For people on dialysis, the experience often is the outcome and if we are to optimise patient experience and outcomes, attention to all the needs of those with advanced kidney disease should start long before dialysis is required. The year before renal replacement therapy is likely to be needed is a crucial time to address medical, both physical and mental, psychological and social issues so that the transplant, dialysis and conservative care options can be fully explored and informed choices can be made. This should take into account individual decision making styles and peoples preferences , needs, desires and lifestyles as well as their physical, mental, psychological and social situation. Shared decision making is the way in which the multi-disciplinary kidney care team communicates to the patient personalised information about the options, outcomes, probabilities and scientific uncertainties of the various treatments and the patient communicates his or her values and relative importance he or she places on the potential benefits and harms. Shared decision making is a fundamental part of care planning and promotes the best choice in what otherwise can be a complex and overwhelming situation. Every kidney patient is entitled to receive care planning and have their own individual care plan addressing all these needs.

But not everybody who needs dialysis receives this multiprofessional preparation and choice to acheive the best outcome for their own wishes and circumstances. We have however seen substantial improvements over the last 5 years. The number of people with end stage kidney disease arriving at kidney units requiring immediate emergency dialysis has fallen by about a third since the introduction of strategies to identify kidney disease earlier by the NSF. Those that do arrive without adequate preparation should receive intensive input from the renal team so they too have an opportunity to choose the type of dialysis, consider transplantation or , where appropriate, choose conservative kidney care. Timing of such discussions when patients have been very unwell can be tricky and I think that we can do better both in identifying more people early so fewer “crash land” and also in ensuring that sufficient attention is paid to consideration of benefits and risks of different choices made by patients when they start dialysis in this unplanned way.

People who are on dialysis come in all shapes and sizes – some are young, some are old, some what the freedom of managing their own condition at home, others require the support of the kidney team to optimise care so the care plan has to be personalised – we will fail if it’s a tick-box exercise. We do, however, know what complications to expect and both patients and staff need to be looking out for the early warning signs so the complications of dialysis can be minimised. For those on haemodialysis, having an arterial venous fistula is the key to good outcomes and reduced complications including infections and vascular events which are major medical problems for people receiving dialysis. There have been significant improvements in vascular access over the past 5 years as evidenced as by a reduction in more than half of the number of MRSA blood stream infections now seen. There Is still big variability between units and the targets set by the Renal Association have not been achieved in most units yet; the fact that in some units 95% of people receive dialysis use a fistula is very encouraging, it means that units where only 65% of people have a fistula, or worse still only 50%, can do considerably better. One of the national Kidney Care Audits that I am sponsoring focuses on vascular access with the aim of being able to regularly measure this quality marker and achieve year on year improvement in every kidney unit.

One of the many challenges in kidney care is that most things are not as clear cut as the need for good vascular access for long term wellbeing for people on haemodialysis. The evidence base for clinical practice in dialysis is much less than in many other conditions such as heart disease or cancer because historically there hasn’t been as much research in kidney care as other areas. However, Kidney Research UK, the Renal Association and the British Renal Society are starting to plug that evidence gap. We can also draw parallels from other areas, particularly heart disease and until proven otherwise, it makes sense that people on dialysis, because they have such high rates of heart disease, should receive the same sort of treatments as people without kidney disease who have had heart attacks where we have much more research and know more clearly what should be done.

There can be no health without mental health. This has been a neglected area in kidney care. We know that up to 30% of people on dialysis will experience a period depression. Being on dialysis is often a psychological as well as a physical strain for families as well as patients. R ecent guidelines on the identification and treatment of depression in people who already have an established physical illness has recently been produced by the National Institute for Health and Clinical Excellence (NICE), these guidelines are very relevant to kidney services. There are now good tools to screen for depression in the pre-dialysis and dialysis population and there are pharmacological, behavioural and cognitive treatments that can help alleviate depression in people receiving dialysis. This should not be neglected.

The social and psychological support workforce play a fundamental role in renal care helping patients and carers address the practical, economic, social and psychological problems associated with chronic disease, disability and eventually death and bereavement. It is a concern that social workers and psychologists are in such short supply on dialysis units. The Renal Special Interest Group of the British Association of Social Work carried out a study of renal social work provision in 2007 and disappointingly found that the number of renal social workers had fallen by 11% since 2002. The Kidney Alliance has also highlighted that social work appears to be one of the most severely under-resourced areas of renal services, with staffing at levels falling far short of those required to provide an adequate service. Yet some places are successfully addressing this problem. In 2008 Wirral University Teaching Hospital analysed the requirements for their patients. Their review found that anxiety and depression were common and with the support of the Hospital Trust the team have now employed a full time psychologist and are training members of the nursing staff in counselling. It’s a false economy not to treat depression, not to provide psychologist support for people with advanced kidney disease and not to address the social care needs of those on dialysis. Mental illness, psychological distress and unresolved social care issues result in an increased need for hospital admissions and much longer lengths of stay than in people who have these needs well supported, Unnecessary admissions and long length of stay waste money that could be used in improving the quality of care for people with kidney disease.

So, in summary, progress has been made in some areas but there’s much to be done – particularly in terms of mental wellbeing, psychological and social care. That is the reason that care planning remains high on the agenda of NHS Kidney Care and why we are support a move to a chronic disease management model of care where the patient is at the centre, where education, empowerment and encouragement for the patient on dialysis are given as much importance as some of the physical measurements we make to assess quality , and where care is delivered in a true partnership with the patient. There is good data to show that the more a person is involved in their own treatment decisions and management plans, the better the outcomes.

Published in Kidney Life magazine 2010

Q & A: Improving Choice

Q: Whilst many patients at my unit would not want to Dialyze at home, there are many who would like the freedom that this could give them. Is there any chance of persuading Nephrologists, and those who hold the purse strings to give us this choice ?'

A: Thank you for the question. Self Care dialysis offers many advantages for both patients and carers whether that is at home or in hospital. In my experience most if not all patients are willing to understake some level of self management, whether that be taking their own blood pressure, tracking their weight post dialysis or dialysising in the comfort of their own home. I think we need to open healthcare professionals, patients and carers minds to the opportunities self care dialysis can give rather than start with the assumption that dialysis should be hospital based. Evidence increasingly demonstrates the benefits of self care over paternalistic care. Each type of dialysis and the environment within which is takes place has advantages and disadvantages, dialysis at home for example offers freedom and flexibility whilst removing the need for 6 journeys a week to and from the hospital.

People receiving home haemodialysis can tailor their treatment schedule to suit their needs and establish a regimen that “works for them”. Paradoxically, home dialysis for say two hours, five times per week – a total of ten hours per week, provides much better control of symptoms and chemistry than traditional thrice weekly dialysis four hours each run. That’s because fluid removal can be balanced against that day’s intake and the impurities in the bloodstream that the normal kidney excretes are mainly removed in the first hour or hour and a half of dialysis. Slow, long overnight dialysis is another option, which can result in improved blood pressure control without the need for tablets. Many people on home haemodialysis find they can eat and drink normally, need far fewer tablets and feel considerably better. Patient stories like Marion Higgins, Patrick Pearson-Miles and Jonathon Hope tell it much better than I can.

Peritoneal dialysis is a treatment that we should not forget and nor should we ignore its place in allowing people to maintain independence, avoid travelling to hospital and achieving a good quality of life. We now have automated peritoneal dialysis options for overnight dialysis and several units have commenced assisted peritoneal dialysis programmes, where a trained team member helps with the connections and mechanics of peritoneal dialysis.

Standard 4 of the National Service Framework for kidney disease states “renal services to ensure the delivery of high quality clinically appropriate forms of dialysis which are designed around individual needs and preferences and are available to patients of all ages throughout their lives”. So every person has the right to have dialysis at home. Anyone approaching or receiving dialysis, reading this, who is thinking about home treatment, should discuss the options with your kidney consultant and dialysis team. This should focus on fundamental decisions such as whether you wish to have home or hospital based treatment. Then consider which type of dialysis or if no dialysis is preferred (the conservative pathway); or whether transplantation is a possibility. It’s not like choosing which surgeon or hospital to go to for a gall bladder operation. That’s why on World Kidney Day in 2009, NHS Kidney Care, launched a template care plan to stimulate care planning for people with kidney disease. Care, or health planning promotes shared decision making - people need to know the pros and cons of each type of dialysis, transplantation and conservative care. People need to know what the impact of dialysis will be for individuals like themselves – how they will feel and what they will be able to do, what the fluid and dietary regime may look like, what complications might occur and their likelihood and of course information about survival. It’s not possible to predict these things precisely but the clinical team will be able to share local data on such outcomes and increasingly, and appropriately, people approaching dialysis are having the opportunity to discuss the various modalities with individuals and families who have received different forms of dialysis.

Home dialysis also costs less than hospital or satellite based dialysis. We know that the average costs of hospital haemodialysis are about £24K per year and peritoneal dialysis is about £18.5K per year. Haemodialysis at home does need set-up costs – for the room, machine and water treatment but these additional costs are offset by the savings in staffing costs in about a year. So, although the consumable costs for, say, dialysis 5 times per week at home are of course greater than the consumable costs of in-centre dialysis 3 times per week, the overall service costs are considerably less. Not to mention the transport and time savings.

There are several barriers to achieving home dialysis, not only related to perceived financial issues but also involving patients and, perhaps more importantly, clinicians, commissioners and managers. It is apparent that there are a variety of approaches to common difficulties and that even in the best performing units there is scope for improvement. At the recent home dialysis meeting in Manchester there were over 250 people sharing experience, learning from each other’s successes and failures and considering how we as a community can optimise shared decision making so that the “right” proportion of patients are on home therapies. That will not be the same number in every unit – preferences of an inner city population close to a dialysis unit may be very different from those in a rural population with long distances to travel. I was particularly encouraged that so many patients attended the home dialysis meeting and I would like to see patients, clinicians, managers and commissioners championing choice so that high quality clinically appropriate forms of dialysis, designed around the needs and preferences of the individual are available to patients of all ages.

Published in Kidney Life magazine in 2009

Thursday, 21 October 2010

I can't get no .... satisfaction

Two publications caught my eye this weekend; Keith Richard’s autobiography of The Rolling Stones and “Real Time Patient Feedback” best practice guide from the Practice Management Network. From the serialisation in The Times, the former sounds like a fascinating glimpse into the inner dynamics of one of the most successful rock and roll bands ever, no doubt it will lead to new management books on team works. The latter has been developed in 22 GP practices in England and collects the learning from practice managers and GPs on how to get the most out of real time patient feedback. It has been developed in primary care but has some messages for secondary care. It sets out to help the clinical teams consider what you want to find out from your patients; and the best way to carry out the feedback process. It doesn’t set out a best method but would help you in choosing survey methods, gathering information for improvement and how to use real time feedback to add value to the clinical exchange between patients and healthcare staff.

The British Medical Journal also had an article and an editorial on measures of patient satisfaction and found that asking about patient experience was more discriminatory than patient satisfaction scores. Listen to your patients. High satisfaction scores only indicate that care is adequate, we should concentrate on the low ratings not the average because dissatisfaction, or would Mick Jagger call that no satisfaction, indicates problems that should be addressed.

They concluded that although it is difficult to measure patients’ perceptions of healthcare, it is most appropriate that patients should assess the inter-personal dimension of quality of care because they are the ones to whom we are all ultimately accountable. It is therefore crucial that patient surveys are refined to maximise precision and minimise bias. The research community needs to develop and refine robust and comparable measures of this important aspect of quality of care.

Listen to the patients

The Manchester Conference on Home Dialysis goes from strength to strength. The social movement that began at this meeting three years ago is now in full flow. In 2008 there was a feeling that home dialysis’ time had come, last year individuals and teams came to learn how to set up programmes and a show of hands last week revealed what progress has been achieved. Going from none on home haemodialysis to even one or two is a quantum leap – but many units have now made that transition. Not every unit is in the same place and sustainability needs more than a handful of patients and must relay on more than one or two champions in the kidney units. A theme this year was that everyone in the dialysis team had a role in promoting home therapies, should be listening to patients and hearing what they say and challenging the system, that’s all of us, to provide each individual patient with the most appropriate form of renal replacement therapy for their needs. So that’s 100% of individuals should be given choice, not some arbitrary percentage like 15% must be on home HD.

Sandip Mitra (home dialysis lead at Manchester Royal Infirmary) had asked me to speak about the learning from the NHS Kidney Care Improving Choice Roadshows that have been hosted across the country over the last six months. The most powerful part of each of these events were the patient stories so rather than present the statistics which are impressive in themselves, Bev Matthews and the NHS Kidney Care team arranged for a panel of patients to come along to tell their stories and answer questions from the audience. Nick Maguire (a clinical psychologist and home haemodialysis patient himself) compered our session and did a great job. We also heard from partners and carers – their views, their roles, their needs. There seems to be many different approaches to carers, most common could perhaps be best summed up as inadequately considered. This is a serious oversight that became apparent to me at the first roadshow when Jean Segal interrupted her husband Stuart who had just said “it’s a doddle” with a heartfelt “well it’s not for me, who thinks about the carers?”.

Bringing patients together, to exchange stories, concerns and solutions they have discovered helps. Renal Patient View, that should be available for every kidney patient in the country, has recently launched an online home dialysis discussion forum that will provide peer support.

Watch, listen and hear some of these stories from our Roadshows at NHS Kidney Care and read the frequently asked questions in “Improving Choice: listening to patient stories”.


Related blogs
http://renaltsar.blogspot.com/2010/04/improving-choice-for-kidney-patients.html

Wednesday, 13 October 2010

Bad medicine or an opportunity to integrate

60 mils/min/1.73m2

Maximum estimated Glomerular filtration rate that is associated with all cause and cardiovascular mortality in the general population
The Week in Numbers
British Medical Journal, 9 October 2010

The accompanying lead editorial by Vlado Perkovic and Alan Cass at the George Institute for Global Health starts with the statement – “prevention of stroke, through the identification and management of risk factors is a public health priority.” They are commenting on the linked systematic review by Lee and colleagues that assesses the association between kidney function defined by estimated Glomerular filtration rate (eGFR) and the subsequent risk of stroke. The overall risk of stroke was 40% higher in people with an eGFR below 60 mils/min/1.73m2. This risk was graded, with a 28% higher risk for people with an eGFR of 40-60 mils/min/1.73m2 but 77% higher for those with an eGFR below 40 mils/min/1.73m2. The editorial comments that the persistent association after adjustment for known cardiovascular risk factors increases the likelihood that dissociation is real.

The findings of the Chronic Renal Insufficiency Cohort recently published in the American Heart Journal (2010: 145 pg 690-694) showing that 18% of individuals with mild to moderate CKD (mean eGFR 43 mils/min/1.73m2) also had atrial fibrillation may explain some of the increased risks. This rate of Atrial fibrillation, if you will forgive the pun, is 2 to 3 times greater than would expect in a non-CKD population .

In the same issue of the British Medical Journal as Lee’s paper on CKD and the risk of stroke the Reykjavik prospective study from Iceland reports that even the earliest stages of CKD are associated with excessive risk of subsequent coronary heart disease. Advanced stages of CKD are also associated with non-vascular mortality, particularly deaths not attributed to cancer. This is a large, long term study. Men and women who were resident in Reykjavik were recruited between 1967 and 1991 and were followed up for a median of 24 years. Importantly, the participants in the study provided urine for proteinuria estimates as well as blood for eGFR. The analysis shows that proteinuria, even in the absence of a lowered eGFR, is associated with an increased vascular risk of between 55 – 72%.

These studies were quite different in design and scope: the first was a retrospective meta- analysis, the other two were prospective studies. Lee’s study involved 284,672 participants from a variety of countries. The Chronic Renal Insufficiency Cohort was from North American and the Reykjavik study was a prospective cohort study in 16,958 individuals were followed for nearly a quarter of a century. Together they add important information on the risk stratification of patients with CKD. Perkovic and Cass ask the question “what are the implications for clinical practice?”. The answer: at the very least, evidence suggests the presence of CKD (either reduced eGFR or albuminuria but especially both) should act as a “red flag” that triggers cardiovascular risk assessment and implementation of an appropriate preventative strategy.

It is “bad medicine” just to take a single low eGFR measurement and label someone as having kidney disease. The methodological challenges of measuring serum creatinine and the bias within the various eGFR formulae are well know. A low eGFR result should trigger thinking – why was the kidney function checked?; could this be acute kidney injury?; what drugs might be implicated?; what’s the level of albuminuria?; and are there earlier serum creatinine measures to provide the confirmatory evidence of chronic kidney disease?

Mainstreaming kidney disease management with cardiovascular risk prevention strategies not only holds out the prospect of a preventative dividend in terms of end stage renal failure, it also provides the opportunity to integrate risk assessment and detection of early disease, clinical management, patient and public engagement across the whole panoply of vascular disease.

Wednesday, 6 October 2010

Countdown to the patient transport survey: one week to go

There’s not long to go before the second Patient Transport survey takes place in all renal units on 13 and 14 October. All haemodialysis patients will be given a survey to complete when they attend their unit for dialysis on those days. It will ask about their recent experience of travelling to and from dialysis. There are also surveys for every renal unit manager and renal transport commissioner.

The survey is part of the National Kidney Care Audit which is run by The NHS Information Centre.

As I’ve said before, the audit is vital for monitoring and improving patient transport services. This is so important for patients, whether it’s convenient pick up and journey times for those using provided transport, or the ability to park for free for those using their own cars. It will give us an opportunity to see what has changed since the last survey in 2008, and where improvements can be made.

I would like to encourage all haemodialysis patients to take part. It shouldn’t be difficult to fill in and will really help to make a difference. The results will be completely anonymous so nobody will be identified in any way. For those of you working in renal units, please support the survey by helping patients to take part.

You can find out more at www.ic.nhs.uk/kidneycareaudit

Tuesday, 5 October 2010

Quality Standard for CKD

The National Institute for Health and Clinical Excellence (NICE) have issued a draft Quality Standard for Chronic Kidney Disease covering the whole CKD care pathway and supported by 14 quality statements. The statements range from early detection of those at risk, specialist assessment, planning for dialysis and transplantation to experience of care including transport for those receiving hospital or satellite based haemodialysis.

  1. People with risk factors for CKD are offered testing and people with CKD are correctly identified.
  2. People with CKD are assessed for disease progression and associated complications.
  3. People with CKD are defined at risk groups are referred for specialist assessment in accordance with NICE guidelance.
  4. People with diabetes and microalbuminuria and people with higher levels of proteinuria are enabled to maintain their systolic blood pressure within a target range 120-129 mmHg and their diastolic blood pressure below 80 mmHg.
  5. People with anaemia of CKD are offered anaemia therapy in accordance with NICE guidance if they are assessed as being likely to benefit in terms of quality of life, physical function or avoidance of blood transfusion.
  6. People presenting with acute kidney injury have their medication reviewed and receive an assessment of volume status, multistix reagent strip urinalysis, and an assessment of renal morphology and the presence or absence of obstruction.
  7. People with progressive CKD whose eGFR is less than 20 ml/min/1.73M2 or who are likely to progress to established kidney failure within 12 months receive timely and balanced personalised information on established kidney failure and renal replacement therapy options.
  8. Where clinically indicated, people with established kidney failure start dialysis with a functioning Arteriovenous fistula or peritoneal dialysis catheter in situ.
  9. People with CKD are immunised against infection in accordance with current policy.
  10. People under the care of renal services have their risk of healthcare associated infection minimised.
  11. People with CKD receiving haemodialysis or training for home therapies who are eligible for transport, have access to an effective and efficient transport service.
  12. Medically suitable people with CKD are supported to receive a pre-emptive kidney transplant before the need for dialysis.
  13. People with CKD have a current agreed care plan appropriate to their stage and rate of progression of CKD.
  14. People with CKD needing end of life care or conservative management of established kidney failure, have a jointly agreed advance care plan and access to all non-dialytic medical care for their CKD.

Each of the statements is accompanied by quality measures with definitions, numerators and denominators so that service quality can be assessed and improvements targeted to where they are most needed for the local population. For instance the proportion of people with CKD who need end of life or conservative management of established kidney failure who have a jointly agreed advanced care plan or the proportion of people who start haemodialysis with a functioning arterovenous fistula. Simple measures such as the proportion of medically suitable people with CKD who receive a pre-emptive transplant before the need for dialysis have been chosen so that they are easy to understand and measure.

The quality standard also describes what each statement means for patients, what service providers should do, the role of healthcare professionals and what specification commissioners of care should expect.

The CKD standard will form the basis of future clinical audits and quality improvement schemes. It is likely to link directly to the Outcomes Framework (LINK TO BLOG), an integrated approach to the provision of kidney care is emphasised throughout.

Have a look and have your say on these 2 key questions:

  1. Have NICE identified all appropriate outcomes for each individual quality statement?
  2. Can you suggest any appropriate outcome measures which you feel would illustrate whether this standard as a whole has been achieved?

The consultation is open until 1700 on 10 November 2010.

Recovery, rehabilitation and reablement

How can the latter stages of patients’ hospital stay function more effectively to improve patient experience within the ward, encourage confidence on discharge and improve long term outcomes? The Outcomes Framework, the need to improve efficiency – length of stay is a major cost driver, and the move to make hospitals responsible for patients for 31 days after discharge by not paying for readmissions within that period are focussing attention on the need to improve recovery, rehabilitation and re-ablement across health and social care. This applies to those people coming to terms with starting dialysis or starting immunosuppression for vasculitis, those recovering from acute kidney injury (AKI) or after a transplant as much as people entering rehabilitation after a heart attack or stroke.

Rehabilitation is “an active process by which a person temporarily or permanently disabled by injury or illness is restored to the optimum level of physical, psychological and social function in the context of their previous life and personal experiences. Whenever possible this includes return to chosen or necessary paid or unpaid work and leisure activities”. Reablement is the latter part of that process – the return to “normality”.

This is a big issue. The NHS Institute for Innovation and Improvement estimate that on any one day, 25% of all acute hospital inpatients have no clinical need to be there.

My impression visiting kidney wards up and down the country is that things have improved but that there are still too many people in bed when they could be sitting out, too many without their own clothes and still a lot who could be at home if social care and support were in place in a timely fashion.

A range of recent national audit office reports have identified a lack of well co-ordinated responsive rehabilitation as a common theme.

“Although rehabilitation may help to reduce length of stay, minimise hospital re-admissions and reduce the use of NHS resources following the initial period of hospitalisation, it has not been considered to any great degree by Strategic Health Authorities in their reviews of major trauma services”.
National Audit Office, February 2010

“One of the main barriers to more effective stroke services is the persistent failure of health and social care to work effectively together”.
House of Commons Committee of Public Accounts, March 2010

The Renal Adaption Programme at Imperial College Healthcare is a nurse-led initiative that was set up by Michelle Clemenger and the peritoneal dialysis nursing team at the West London Renal and Transplant Centre in December 2008 to support patients arriving for dialysis in an unplanned fashion who hadn’t had the benefit of pre-dialysis education from the CKD team. The educational support provided to those who present late or unplanned with acute or chronic renal failure provides information and advice about all the treatment options available including home dialysis and the goal is to see people within 48 hours of referral by the ward team. This is followed by education and support over a minimum time period of 6 weeks to help the patients and their families through the changes ahead giving both psychological and educational support. The team uses a range of mutli-sensory learning tools as an aid to deliver the educational support and information. They have also put together a renal adaption programme toolkit including a tailored DVD that’s easy for people to watch whilst on haemodialysis and in the evening with their family who might not be able to visit during the day.

A focus on rehabilitation and developing similar support programmes replicating Michelle’s ideas and materials will improve choice, share decision-making and almost certainly save money by reducing length of stay and increased uptake of the less expensive home dialysis modalities.