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.

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

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.