Sustainability the seventh dimension of quality

The Committee on the Quality of Healthcare in America report focussed on how the healthcare delivery system can be designed to innovate and improve care. It defines 6 aims for improvement of healthcare quality:

1. safe – avoiding injury to patients from the care that is intended to help them
2. effective – providing services based on scientific knowledge to all who could benefit and refraining from providing services to those not likely to benefit (avoiding under use and over use)
3. patient centred – providing care that is respectful of and responsive to individual patients’ preferences, needs and values and ensures that patients’ values guide all clinical decisions
4. timely – reducing weights and sometimes harmful delays for both those who receive and those who give care
5. efficient – avoiding waste, in particular waste of equipment, supplies, ideas and energy
6. equitable – providing care that does not vary in quality because of personal characteristics because of gender, ethnicity, geographic local and socio-economic status.

To these 6 we can now add sustainability. Any quality aims that cannot be maintained with the resources available to us are set up to fail. It is important to realise that working to improve sustainability will seldom be in conflict with the other dimensions of quality; in particular, low carbon healthcare is likely to improve cost efficiency and patient empowerment.

Kidney care has this year become the first clinical specialty to address environmental impact, with the creation of a green nephrology programme. The aim of the programme is to support the transformation to sustainable kidney care whilst improving quality and efficiency. It is delivered through a partnership between the Renal Association, the British Renal Society, NHS Kidney Care, the NHS Sustainable Development Unit, the National Kidney Federation, the Association of Renal Industries and Baxter Healthcare, led and supported by the Campaign for Greener Healthcare.

In September 2009, renal trainee Dr Andy Connor joined the team as the first “Green Nephrology Fellow” funded by NHS Kidney Care. At the BRS/RA meeting last week we heard what has been achieved:

• Green network – 79% of kidney units in the UK now have a green nephrology local representative. Kidney Patient Associations have been invited to put forward a green representative too – find out if your unit is going green.
• Sustainability survey – 87% of represented units completed this survey covering topics from staff travel to procurement of dialysis products. Slide presentations on the survey results have been sent to your local representatives for discussion in your unit.
• Case studies and how to guides giving best practice in: conserving water in haemodialysis
  Retrofit of heat exchangers to dialysis machines; telephone clinics for follow up for renal transplant recipients; reduce, re-use, recycle in the dialysis unit
• Webinars – held on water conservation and on waste management in haemodialysis
  10:10 renal checklist – 10 actions for renal units to support the 10:10 campaign: cutting carbon by 10% in 2010
• Articles on sustainability – accepted in medical journals, indexed once published
• Commissioning – sustainability clauses included in the national peritoneal dialysis pathway
• Carbon footprinting – the first carbon footprint of a clinical specialty is soon to be published!

At the Green Nephrology reception during the conference some of these projects were showcased. We heard from Libby Critchley that the Countess of Chester Hospital had stopped sending paper copies of all blood test results as they are already in the IT system. Saving £20000 per year. Patient care plans have been reduced from 14 to 6 pages. The patients love the change. John Stoves from Bradford described electronic consultation as an alternative to hospital referral for patients with chronic kidney disease. In participating practices half the referrals are now through the e-consult service. The NHS sustainability development unit estimates that an outpatient visit generates a carbon footprint of approximately 40 Kgs CO2e (carbon dioxide equivalent). Rachel Westecott from the University Hospitals of Leicester told us that by adding an extra bin into the procedures room to allow black sacks and orange sacks to be used simultaneously the amount of incinerated waste fell dramatically to a third of the previous levels. The average cost of disposing of incinerated waste (orange sacks) is in the region of £400 per tonne compared with £80 per tonne to dispose of waste to landfill sites (black sacks). Rachel did comment that a lot of the waste in black sacks is actually recyclable and I think has her eyes set on establishing systems for recycling of paper, carbon, plastic. The renal unit of the Royal Cornwall Hospitals was one of the first to adopt a “green action plan”. Simeon Edwards described the use of a whole system approach. The team quickly identified carbon reduction opportunities, prioritised them and moved into action. By the end of the first year they have achieved

• An improved workplace with more nurse patient time
• A reduction in healthcare acquired infections
• “Cost avoidances” running at £32,000 per year
• Carbon reductions running at approximately 33 tonnes CO2 eq per year
• Clear improvements in the patient experience with reduced waiting times, fewer aborted journeys and more patient self-care.

We heard that the Bradford unit are preserving water by copying the Kent water treatment approach: Bristol have adopted the Coventry telephone transplant clinic and Fife are retro fitting heat exchangers as described in one of Andy Connor’s first published case studies.

Andy summed up the progress as cycles of experiments creating a revolution rather than merely next steps. You can see all the posters at NHS Kidney Care and learn more at the Greener Healthcare website.

Truly Tasty

Valerie Twomey, a kidney transplant recipient has spent the last year or more bringing together chefs from across Ireland to create over 100 special recipes for adults living with kidney disease. Valerie is passionate about people with kidney disease being able to live their lives to the full. We met a few years ago when we were both speaking in the European Parliament and at that time Valerie mentioned this project to me. I am delighted to see it come to fuitition.

For your next celebratory dinner how about an elegant courgette carpaccio with rocket & parmesan, the creation of chef and cookery teacher Rory O’Connell, followed by mouth-watering poached salmon pancakes with chive cream cheese from the kitchen of Kevin Dundon at Dunbrody House ; and, to finish, either a pear and apple crumble or for the truly traditional bread and butter pudding a la Domini Kemp who with her sister runs Itsabagel.

Eating well and enjoying eating is one of life’s great pleasures but is not quite such an easy task for those with long term kidney problems where diet is an important aspect of care. Knowing “what is in that dish” is not something that comes easily. Preparation of a meal suitable for adults with kidney disease is one step; preparation of a kidney friendly meal that’s also delicious may be a considerably harder step to master. Valerie Twomey has assembled some mouth watering recipes from Ireland’s top chefs, each recipe has been expertly analysed by renal dietitians to ensure that they can be easily incorporated into a renal diet. Of course one size does not fit all and it’s important to fit these recipes into the overall diet and before using the book kidney patients are advised to discuss recipes with their dietitian. The chefs in this book have proven that you can enjoy great food whilst on a renal diet. “Truly Tasty” is available to buy from book shops or you can read a but more about it and order online at Amazon.

Getting vascular access right

The first national vascular access audit was released today. Haemodialysis can provide excellent long term treatment for people with end stage chronic kidney disease. To do so requires repeated connection to an extra-corporeal circuit and high quality vascular access is critical to the success of this modality.

Successful renal replacement therapy also requires preparation and choice. Supporting people with kidney disease to achieve the best possible experience of care and outcomes for them is the overarching aim of the National Service Framework for Renal Services. For those with progressive kidney disease that involves multi-disciplinary care planning and shared decision making including education, psychological preparation, weighing up the pros and cons of the various options and when haemodialysis is chosen, creation of the best possible vascular access. That in itself requires high quality team-working often involving radiology as well as surgical colleagues to ensure timely operation to allow full maturation of the access by the time it’s needed.

Starting haemodialysis with a native arteriovenous fistula provides a significant survival advantage because of the association of other forms of access with infective and thrombotic complications. Dialysis via a fistula will also provide the option of higher blood flows during the procedure resulting in more efficient dialysis. Lines and grafts to access the circulation for dialysis are associated with more and longer inpatient admissions, with more MRSA and MSSA bacteraemias and with higher morbidity and mortality.

Here, as in other aspects of kidney care, the patient plays a key role. Even before the surgery to create the fistula they should be given the responsibility of preserving forearm veins and permission to question anyone who suggests venipuncture or placing lines in these vessels. After dialysis starts, observation, monitoring and care of the fistula during needling for haemodialysis or during hospitalisations remain important components of kidney care.

Not all people who need haemodialysis can have an arteriovenous fistula but the variability and access type between units in the United Kingdom and the international best practice comparisons reveals differences in service organisation, priority given to pre-dialysis care and quality of surgical and radiological support for access salvage. The variance points to a significant quality improvement opportunity.

Improvements in vascular access for haemodialysis is supported by the NSF where it has its own standard and challenging best practice goals; by the professional societies’ recommendations and targets and by an 18 week pathway. Understanding the complexity of access and continuously measuring what the service is providing are crucial if we are to achieve the quality gains that we know are possible. This national audit being undertaken by the Information Centre in partnership with the UK Renal Registry is playing a vital role in establishing reporting systems to provide that understanding and knowledge. The aim is ambitious; universal coverage and embedding into Renal Registry business as usual to drive continuous quality improvement. The prize, marked improvements in patient experience and outcomes, is well worth the considerable effort of all those involved in developing, working with and using this audit.

Q & A: PD Tariff and BP targets on PD

Q: Dear Donal, I have just seen the PD tariffs, there appears to be no tariff for assisted PD. Secondly I am concerned about the quality marker of blood pressure targets. I am unaware of any data to support these targets, the Renal Registry did present an abstract that showed adverse outcomes for hypertensive peritoneal dialysis patients listed for renal transplantation, but the Registry does not have data to support such a blood pressure target for peritoneal dialysis population.

It is now becoming obvious that "normal" haematocrit is not the correct target for dialysis patients. and it may well be that "normal population" BP targets are not best for PD patients, there is increasing data that very low BP targets do NOT improve outcomes in type 2 diabetics,

My main concern is that a rush to introduce low BPs for PD patients may well result in an earlier loss of residual renal function. This reminds me of Tom Golper and his committee which drew up the standards for PD in the USA - the original DOQI clinical guidelines. They went for higher "adequacy" targets, on the basis to ensure patients were not under-dialysed, and thought that this would improve PD in the USA - but in time this resulted in a fall in US PD patients, as "larger" patients could not readily achieve the urea & creatinine targets.

Introducing spurious targets on the basis that "big brother" knows best, I suspect will lead to a further reduction in PD populations, by potentially wiping out residual renal function.

Presumably you had input into these targets? Best wishes Dr Andrew Davenport, Royal Free Hospital

A: Dear Andrew, thank you for your email of 7 May. I was pleased that we had the opportunity to discuss this at the Renal Association last week.

The non-mandatory peritoneal dialysis tariff is, as are other tariffs, derived from the reference costs returns each Trust has a statutory duty to provide. These are based on HRGs. At present we do not have HRG for assisted peritoneal dialysis and therefore as you say, no tariff for assisted PD. Assisted PD is relatively new in the UK and quite variable in uptake between units. It has been supported by local arrangements.

I am pleased that the draft scope for the NICE guideline on PD includes assisted PD and expect the guideline will produce some evidence based recommendations.

We are also in the process of reviewing the national renal dataset so that it reflects current and future practice and the expert working group for the renal HRGs is aware of the changes in practice and the need to review the dialysis HRG structure in due course.

The potential quality indicators were consulted upon by the Information Centre some time ago. The consultation included a number of renal parameters derived from the quality and outcomes framework and from the Renal Association guidelines and audit measures. Several of these received strong support and have been adopted. A number of other indicators were highly endorsed but were not able to be adopted in the first wave of indicators as the ‘metadata’ required needed some additional work. You will be aware from the recent Renal NSF update that work continues on LT18 which covers phosphate control and LT20 which covers blood pressure control. It is the intention to split LT20 so that the renal association guidelines for haemodialysis and peritoneal dialysis can be considered separately. The quality indicators rely on professional advice and have been developed by the Information Centre in conjunction with the Royal Colleges and professional societies prior to the public consultation. There is no proposal to use the Indicators for Quality Improvement for payment for performance tariffs. The IQIs are intended to provide a menu of options from which providers and commissioners can choose items on which to focus on a locally negotiated basis.

It is important that the adoption of quality indicators does not lead to unintended consequences. I am hopeful that the NICE guideline on PD will provide an evidence based analysis which will be used to drive improvements in outcomes. The process may well also identify some of the important evidence gaps where research is needed. Best wishes, Donal

Shared Decision Making

So what’s the problem? Well, patients in England now say they are being seen quickly – a major improvement from only 5 years ago: they also still have a high level of trust in their doctors but they’re getting less information about medicines than previously and do not feel involved in decisions about their treatments.

We don’t yet have data from primary care about the discussions that take place when people attend for a CKD check-up. Diabetes might give us a clue – nearly 100% of people with diabetes are offered appointments for review.
Less than 50%, and falling, report that they almost always ….

…. discuss ideas about the best way to manage their diabetes at their check-up
…. agree a plan to manage their condition over the next 12 months at their check-up
…. discuss their goals in caring for their diabetes at their check-up

I know from talking to those working in primary care, the research groups studying CKD management in primary care such as the Greater Manchester Collaboration for Leadership in Applied Health Research & Care (CLAHRC) and the Health Foundation and Kidney Research UK funded Quality Improvement in CKD initiative that information for people with reduced GFR remains one of our blind spots. We know that quite a number of people are placed on CKD registers and aren’t even told. Given the public understanding of diabetes it would seem highly unlikely that people with kidney disease have a richer interaction when they are reviewed.

We also know there is large variation in the uptake of healthcare interventions. For instance, there is a four-fold variation in knee replacement between different primary care trusts across the country. Given that primary knee replacement costs £5808, potential savings are £39M if PCTs with rates higher than the median reduce to this level. But beware because we don’t know what the right level is! Sticking with knee replacement for a moment, satisfaction questionnaires show that only 80% of people are satisfied with the outcomes of their knee replacement surgery and satisfaction was highly correlated to the Oxford knee score. So if people knew their Oxford knee score before they decided on surgery would everyone choose that option or would some of the 20% who didn’t get any symptomatic or functional improvement from surgery opt not to undergo the procedure?

Shared decision making supports individuals so they can make rational, health and medical decisions based on a consideration of the benefits and risks for them and their own personal values and preferences.

Shared decision making is a process in which the patient and clinician together reach an informed decision about the plan of care on the basis of the patient’s clinical needs, priorities and values.

The clinician’s expertise lies in diagnosis and identifying treatment options according to clinical priorities; the patient’s role is to identify and communicate their informed understanding, values and personal priorities, as shaped by their social circumstances. Patient decision aids are tools that prepare patients for consultations by explaining options, quantifying risks and benefits, helping patients to clarify their values and providing structured guidance in deliberation and communication.

The future is already here. NHS Direct offer a knee arthritis decision support tool for people with arthritis of the knee who have pain, stiffness, limited mobility or other symptoms that may make everyday activities difficult. Its purpose is to help people decide which approach to treatment for knee arthritis is right for them. The decision support tool uses the Oxford knee score to help identify how much pain and discomfort the knee is causing. Patients input information about themselves and their knee pain, information comparing the various treatment options is given and knowledge is checked. Through this process patients explore what is the best option for them. Most people use the tool online, but it can also be delivered over the telephone. The tool doesn’t make the decision for the patient, it provides the basis for the informed discussion and shared decision making with the healthcare professionals.

So what’s the effect? A review of 10 systematic studies of patient decision aids found they improved patients’ participation, increased their knowledge of treatment options, realigned their expectations and improved the match between their values and subsequent treatment decisions. A Cochrane review in 2009 found that in most instances the use of decision aids reduced rates of surgery, both in North America and the United Kingdom.

Given the critical importance of preparation and choice in the year before end stage renal failure, advanced kidney disease would seem to be a good place to see if shared decision making and decision support tools could play a part in improving the experience and outcome of care for people faced with options of dialysis or conservative kidney care. Most of the work on decision aids has been for surgical interventions but I can see no reason why the principle of “give people the care the need and know less, the care they want and know more” shouldn’t apply to long term medical conditions as well as surgery.

Q & A: Transplant work up costs

Q: Dear Donal, I would be grateful for guidance on this which has some bearing on the (otherwise welcome) recent proposals for more explicit remuneration of dialysis services. There is a potential serious funding shortfall likely to occur in non-transplanting renal centres, who currently bear the cost of transplant work up and follow up from savings from the HD budget. I have discussed this at a Renal Advisory Group meeting and our colleague Catherine Turner is planning to bring this up at a national level in due course as well. Having emailed a couple of dozen colleagues around the country, it seems nobody has a simple or workable solution, and the worry is that in a cash-strapped economy patient feed through into transplantation services will be threatened. Thanks, Paul Warwicker, Renal CD. Lister Renal Units

A: Dear Paul, thanks for your email, I awaited issue of the final Guidance on PbR for 2010-11 before responding. You will no doubt have seen that and “Developing robust reference costs for kidney transplantation in adults” and the FAQs, available on the NHS Kidney Care website, which have been produced to help support the introduction of the non-mandatory tariff for dialysis.

Quite a lot of work has been done to improve the reference cost returns for kidney transplantation and to produce a specification template, which has been agreed with all the transplanting teams so that a complete picture of costs is available. The intention is to bring kidney transplantation into PbR probably in a non-mandatory fashion akin to dialysis this coming year, from April 2011. This has now been published. Part of that exercise involves specifying the various components of transplant work-up some of which of course can be more easily done for the potential recipient at the non-transplant centre. A number of these such as outpatient visits and cardiological investigations would I think already be within other tariffs but there will no doubt be other elements that are currently “bundled” with the current funding arrangements for transplantation. These do vary between centres and specialist commissioning groups.

We have also begun some early discussions about a potential best practice tariff for kidney transplantation considering elements such as timely transplant listing, laparoscopic live donation and shorter cold ischaemic times. I should emphasise that these discussions are at an early stage. You will also appreciate that patient level costing isn’t available from most Trusts yet and work still remains to be done on the kidney transplant pathway specification, coding, data capture and counting challenges before we are able to move to robust PbR type contracting arrangements.

Practicing in a non-transplanting centre and having, until I took up my national post, been clinical director, I do appreciate the challenges the historic and diverse commissioning arrangements pose. The overarching principle must remain that all individuals likely to benefit from a kidney transplant are supported in making choices at an early stage, listed promptly and managed so as to achieve the best possible quality of life (NSF Standard 5). To achieve this the local contracting arrangements should take account of the shared model of transplant pathway care and guard against perverse incentives or distortion of clinical need. I think your document “Funding for Transplant Service in non Transplanting Centres – a discussion document” will support such an approach locally and I know that Catherine Turner (Senior Commissioning Manager/Renal, East of England Specialised Commissioning Group) is keen to promote equitable arrangements locally that will support a nationally consistent approach. Thank you for writing and I hope this is helpful. Donal.

STOP PRESS: Raised urinary albumin predicts death

Two simple tests of kidney function and damage predict total and cardiovascular mortality risk in a wide range of populations according to a systematic analysis of 21 studies including more than 1.2 million participants in Europe, USA, Australia and Asia. One measure estimates the kidneys’ filtration function (the eGFR) using a blood test and the other estimates kidney damage using a urine test for protein or albumin (the ACR ).

The findings appear in an article published in The Lancet on Tuesday 18 May, written by academics from the Chronic Kidney Disease Prognosis Consortium established last year by Kidney Disease: Improving Global Outcomes (KDIGO), which includes UK collaborators Dr Dorothea Nitsch from the London School of Hygiene & Tropical Medicine (LSHTM), and Professor Paul Roderick from the University of Southampton who is also a member of the Renal Advisory Group for the Renal National Service Framework at the Department of Health .
Chronic kidney disease (CKD) is recognised as a major global public health problem. The disease affects 10–16% of the adult population in Asia, Australia, Europe and the USA and increases the risk of all-cause mortality, cardiovascular disease and progression to kidney failure which may need costly dialysis of transplantation, even after accounting for traditional risk factors such as hypertension and diabetes. The prevalence of chronic kidney disease is increasing worldwide with the global obesity epidemic and as populations age. This is of particular importance in low and middle income countries who face an increasing burden of non-communicable disease .

The new findings are part of a comprehensive effort to refine the definition and staging of chronic kidney disease. Current guidelines from the National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative (KDOQI) define chronic kidney disease based on the presence for greater than three months of either: (1) estimated kidney filtration function below 60 ml/min/1·73 m2 (approximately half the level in a young healthy adult) or (2) kidney damage most commonly detected by protein in the urine (the most sensitive test is an albumin-creatinine ratio (ACR) of 30 mg/g or greater).

Staging aims to categorize the severity of an illness to help in guiding treatment. Based on the large amount of data analyzed, the study confirmed earlier suggestions that adding information about the level of protein in the urine can improve the current staging system for chronic kidney disease, which centers on the kidney’s filtration function. The level of protein in the urine added information about the risk of mortality at all levels of kidney function.

Kidney filtration function was unrelated to mortality risk in the 75-105 ml/min/1•73 m2 range; a reduction to 60 was already an independent risk factor for total and cardiovascular mortality with 18% increased risk of mortality, rising to over 50% increased risk at eGFR level 45 and the risk increased threefold at an estimated filtration rate of 15 ml/min/1•73 m2, when people often need dialysis.

Mortality risk also increased progressively with increasing albumin in the urine starting at the lowest levels. The risk of mortality was elevated by approximately 50% at 30 mg/g albumin to creatinine ratio, the threshold for defining chronic kidney disease, and rose to more than four-fold at high levels of albuminuria (1 gram/g) compared to an optimal level of 5 mg/g. Even people with high normal levels of albumin in the urine were at statistically significantly greater risk of mortality than people with low (optimal) levels of albumin in the urine.

Measurement of urinary albumin creatinine ratio is now part of the Chronic Kidney Disease domain of the primary care quality outcomes framework in the UK and is becoming a fundamental part of assessing cardiovascular risk and risk of progressive kidney disease in this population .

The authors found that kidney filtration and measures of urine albumin/protein acted independently and multiplied risks of mortality, confirming that both urine and blood measurements are needed together to fully capture the mortality risk that is associated with chronic kidney disease.

Data presented in this meta-analysis confirm beyond any doubt that the current thresholds are indicative of increased all-cause and cardiovascular mortality risk,” Roberto Pontremoli of the University of Genoa in Italy and his colleagues write in a Comment accompanying the article. They go on to say that this sort of testing, while it bears “powerful prognostic value,” remains “largely underused in risk calculators as well as in daily clinical practice,” “These results indicate that the kidney may provide useful information about our future health. Therefore, they will hopefully promote greater use of renal function parameters in clinical practice aimed at global risk assessment.”Kidney Disease: Improving Global Outcomes (KDIGO) has already appointed a workgroup to develop a revised global chronic kidney disease guideline.

Driving up quality while encouraging innovation? Yes we can!

Quality in healthcare has moved centre stage in the past few years. Quality healthcare isn’t just about treating diseases, it’s about treating people and indeed populations with or at risk of disease. Quality can be defined, it can be measured and it can be improved. The Institute of Medicine , in 2001 , proposed 6 specific aims for improvement. Healthcare should be: safe, effective, patient-centred, timely, efficient and equitable. To that we can now add a seventh, sustainable. In each of these dimensions we can develop metrics, quality indicators and quality standards to support improvements in direct patient care. These measures need to be based on evidence and comparison with what can be achieved in the best units. The measures can be displayed in clinical dashboards so that local renal unit teams can see immediately the effect of introducing Plan, Do, Study, Act (PDSA) cycles on the quality of care they are delivering. Quality indicators are published by the Renal Registry and these can now be incorporated into Trust’s quality accounts or form the basis of commissioning for quality and innovation the so called CQUIN scheme . Over the past 3 years, quality has become the organising principle of the National Health Service.

Quality can be defined in kidney disease right across the pathway: process measures for early detection of kidney disease in people with diabetes, blood pressure control, preparation for renal replacement therapy as evidenced by care planning, timely vascular access creation, pre-emptive transplantation, laparoscopic live donation, short cold ischaemic times for kidney transplantation, a host of biochemical measures for those on dialysis and preferred place of death for those who opt for conservative kidney care. Of course we don’t have all the answers and we don’t have the perfect indicators so we need to beware that we don’t make what is easy to measure important at the expense of what is truly important but perhaps difficult to measure . We need to increase our evidence base using clinical audit, quality improvement and a research to establish what are the best care bundles for certain populations at the different stages of chronic kidney disease or acute kidney injury.

Quality is not just about clinical outcomes but also includes the patient’s experience of treatment. In the recent mid-Staffordshire NHS Foundation Trust enquiry conducted by Robert Frances he commented “if there is one lesson to be learned it is that people must always come before numbers. It is the individual experiences that lie behind statistics and benchmarks that matter”. Treating people with dignity, how would we wish to be treated and how we would wish our families to be treated is part of providing high quality care for all.

The quality and productivity challenge is immense. The NHS is being asked to save between £20-26 billion across the service over 3 years. This will need innovation and transformational change . The characteristics of a sustainable system have been identified as: care closer to home, earlier interventions, fewer acute beds, more standardisation, empowered patients and reduced unit costs. To achieve these changes we need to think in terms of the whole system rather than within traditional organisational boundaries. We need to change the nature of leadership with its focus on targets to prioritise quality in all its dimensions .Looking out to see what we can copy or who we can collaborate with not up for answers from on high .We must encourage innovation and not hold back the leading edge; we must learn from failure and become less risk averse; but we must avoid change for the sake of change or “messing about masquerading as action”.

The members of the Renal Association and the British Renal Society are uniquely placed to lead this change. Clinicians need to work closely with managers and commissioners. Collaborative working across the virtual (or is that virtually insurmountable !!!) boundaries and barriers of the NHS will be needed. High quality care is delivered locally by individual clinicians who must be the advocates for their patients and the agents for change and quality improvement. Local teams must find local solutions, professional bodies must encourage comparative audit, sharing of best practice and help address the gradients of inequality. The Department of Health, the NHS Board , the Strategic Health Authorities and the providers of services - the PCTs, health boards and Trusts must play their part in system alignment making sure all parts of the system work together and pull in the same direction so we have winners – our public and patients; not so that we have institutional winners and institutional losers – a situation in which we would all lose.

Will it be possible to move to a virtuous circle where improving quality eliminates waste and improves efficiency? You may think that money is someone else’s business but addressing financial inefficiencies is a key personal, professional and moral responsibility because it allows us to free up resources that can then be used to treat more patients more effectively. I BELIEVE WE CAN DO IT.

Opening address to the RA BRS in Manchester, 17 May 2010

Q & A: Asylum seekers who need dialysis

Q: Dear Donal, I would be grateful for guidance on this issue. In recent years, and perhaps as a function of the proximity of Yarls Wood detention centre and Luton and Stansted airports, we are seeing increasing numbers of foreign asylum and residency seekers with established renal failure presenting for dialysis. The problem is however that these people are not entilted to full NHS services, rather what is described as 'emergency treatment' only. The PCTs wash their hands of them, the Home Office are painfully slow in processing their cases, and local Trusts unwilling to support regular dialysis. These poor people end up trailing around emergency rooms around the country, picking up ad hoc dialysis sessions on ITUs and differing renal units, until presumably they die.

We have one such woman who is on her 8th or 9th admission to a local ITU/renal unit, whose application for residency status has lasted about 18 months without any signs of progress, and to who I am not allowed to offer a regular slot. Indeed after I recently put her on our programme but she was removed last week (when her family refused to pay). I do feel strongly that we owe these people at least a basic humane level of care, if the Home Office are unable or unwilling to process their applications in a speedy fashion. This can’t be right. The ridiculous situation is that she has cost the NHS about £90K so far for less than a year - whereas to offer her regular HD would cost only circa £25K. This lady is likely to be discharged later this week and I therefore would value advice and help as soon as possible.
Thanks, Dr Paul Warwicker, Renal CD. Lister Renal Units

A: Dear Paul, foreign asylum and residency seekers with established renal failure , are exempt from charge for all hospital treatment, including dialysis, under the “NHS (Changes to Overseas Visitors) Regulations 1989”, as amended, if they have made an application for asylum, which has not yet been determined, including all appeals . This includes those applying for leave to remain under Article 3 of the European Convention of Human Rights on protection from serious harm grounds. They should receive the same level and quality of service and be subject to the same waiting lists and processes as anyone else, based on clinical need. Therefore, it is not correct to say that they are entitled to emergency treatment only.

Failed asylum seekers are not entitled to free hospital treatment, unless the service they receive is exempt (eg treatment provided inside an A&E) or, in most cases, for the continuation of a course of treatment begun whilst they were still awaiting the decision on their application. It is for a clinician to decide what constitutes a particular course of treatment such as maintenance dialysis

Those who are making other applications to remain as residents may not be exempt from charges until they have been accepted or until they have accumulated 12 months’ lawful residence whilst awaiting a decision.

However, Department of Health guidance is clear that anyone who a clinician considers to be in need of immediately necessary treatment must receive it regardless of charges, and it is usually inappropriate or impossible to request charges before treatment. Therefore, the payment is arranged after treatment, and if the person cannot pay then the debt is written off. Urgent treatment is that which, whilst not immediately necessary, cannot wait until the patient can reasonably be expected to return home. Clinicians may base their decision on whether treatment can wait on a range of factors. In many cases maintenance dialysis can be considered urgent. Trusts should take the opportunity ahead of treatment to secure deposits but if this is not possible, the treatment should go ahead. Trusts have a duty to recover charges, but can ultimately write them off if it is not reasonable to pursue them. Only when the clinician considers the need for treatment to be non-urgent should it be denied if the patient does not pay in advance.

Therefore, a clinician may well consider that the need for treatment (regular maintenance dialysis in this case) of a person, including a failed asylum seeker, who is not in a position to return home soon will be “urgent”, in that they cannot wait. As you point out this course of action may indeed be cost less than relying on repeated emergency treatments

I understand guidance on this may be redrafted and issued for consultation soon as part of a larger exercise on access to the NHS by foreign nationals. I attach a summary of the existing guidance as it relates to foreign nationals’ access to dialysis, which was circulated to all Specialised Renal Commissioners for information and to cascade to clinicians on 12 February 2010. I hope this is helpful, Donal.

What the future may hold for kidney care

“Prediction is very difficult, especially about the future” Niels Bohr.

We live in changing times and there is much talk of uncertainty. Globally healthcare demands are rising and in the UK the bank bail out has left our government with a large debt one consequence of which is reduced public service finance. The Kings Fund has predicted that the National Health Service will have to make 26 billion pounds efficiency savings between 2011 and 2014. How will that be achieved? What changes to the structure and financial systems of the NHS will we see? What will the new government’s priorities be? and how will they be achieved? What will the NHS look like and feel like in five years time?

One certainty is that the scale and pace of change is going to accelerate, but there are other certainties as well – the population will continue to age, the use of the internet in healthcare will grow, health literacy will improve and non communicable long term conditions in particular vascular disease will continue to be one of our greatest challenges. Kidney disease in all its various forms is not going away and the prize of better patient experience and outcomes laid out in the National Service Framework for Renal Services published just over five years ago not only remains relevant but also provides the goals and vision for that ambition.

Chronic Kidney Disease is now recognised as a public health problem, prevention, early detection and better primary care management of CKD is firmly on the agenda and over the last three years we have witnessed a shift in the understanding and confidence of non renal healthcare professionals in dealing with kidney problems. The job is not done – only half the expected number of people with CKD have been identified and blood pressure is not optimised in half of these, inappropriate referrals and avoidable “crash landings“ have declined but the variance we can now see between practices and across the country indicates that we can do better. Proteinuria was only introduced into the Quality and Outcomes Framework a year ago and we are yet to see its impact, it is still not recognised as the powerful cardiovascular risk factor that it is by many outside the kidney community.

With the growing experience and confidence of GPs practice nurses and pharmacists I expect more and more people with kidney disease will be told about their results, what they mean (and don’t mean) and what that person can do to reduce their future vascular and renal risks. The goal is for our public to understand kidney disease – estimated glomerular filtration rate and urinary albumin creatinine ratios in the same way they comprehend the link between cholesterol and heart disease, for people with CKD to be informed and activated to participate in their own care and remaining healthy strategies and for all those involved along the kidney pathways of care to support the individual to achieve the best outcome they can.

Preparation for timing and choice of renal replacement therapy modality or conservative kidney care remain essential for good outcomes in advanced chronic kidney disease. The key is shared decision making – where the multi-professional kidney care team provide detailed information about the options, their risks, benefits and uncertainties for that individual patient and the patient often with family and carers shares their values, beliefs and aspirations so that a truly informed choice can be made. This investment in time, building relationships with our patients provides high quality care and saves money. The shape of our End Stage Renal Failure services will change – in part that might be constrained by the current financial climate but I would prefer that to be shaped by our patients and believe we can provide a better service for more patients in three years than we do now.

Getting our metrics of success right is crucial. The UK public support transplantation, the transplant plan is on course, transplantation rather than dialysis then transplantation should be norm with live donor transplants. Live donors continue to rise year on year, in the centres that are ahead of game we see no sign of reaching a plateau – that’s good . There is an 18 week pathway but delays in transplant listing and surgery still exist – where those delays are avoidable the NHS could do better and unnecessary delays waste money. High quality care is actually cheaper than chaotic care.

In the coming year we will see a focus on Acute Kidney Injury and I hope see the foundations for improvement in services for people with rare kidney disease being laid. Acute Kidney Injury has been estimated to cost 5% of the whole expenditure of hospitals. AKI is common, harmful and treatable. Only 50% of people who die of AKI receive good or adequate care. In 20% AKI is predictable and avoidable. Improvements in the quality of kidney care will save money.

Rare kidney diseases often affect young people and frequently result in the early development of renal failure. Our understanding of some of these conditions is improving rapidly, novel treatments are in the pipe line. Research, expertise and a service responsive to the needs of these families in needed.

So the climate has changed, some of the rules are likely to be ripped up and rewritten but the destination remains the same and new opportunities will arise to improve the experience and outcome of kidney care.

“The best way to predict the future is to invent it “ Alan Kay.

Can there be too much patient empowerment?

Listening to patients and carers always brings new insights. Many patients on home dialysis are real experts and can troubleshoot many of the problems they encounter often having had years of experience. Some have built up a network of patient colleagues that they can bounce ideas off, that’s one thing we should certainly encourage.

However, a sense of isolation can also often be heard in the voices and experiences of home dialysis patients. The subtle or not so subtle change of marital partnership to carer and patient relationship needs to be both borne in mind and openly discussed.

Perhaps where empowerment stops and shifting responsibility starts is when home haemodialysis patients have to ring round their local satellite units themselves to find a space should technical or other problems arise precluding them having their dialysis, for instance, over the bank holiday weekend. Supporting expert patients and for those that have them their carers is a crucial aspect of dialysis at home and one we, since we are the system, need to improve if all those that could benefit from home dialysis are to realise the many benefits suitable patients can enjoy such as eating spinach, tomato and mushrooms.