Kate stars in kidney video

Kate makes a shared decision is now available on Vimeo, having premiered last week at the Established Kidney Disease Patient Decision Aids: Launch Event, where it set the tone and was well received.

Find out more about the kidney decision aids at http://sdm.rightcare.nhs.uk/.

Nigel B and the CLAHRC: Top of the Pops

Like a phoenix rising from the ashes, Nigel Brunskill and the Leicester Collaboration for Leadership in Applied Health Research and Care responded in typical fashion to the bitter disappointment in Baku, Azerbaijan earlier in the year when that other son of Leicester, Engelbert Humperdinck came 25^th place out of 26 with only 12 points in the Eurovision Song Contest. I never even knew Azerbaijan had ambitions to be part of Europe! In a successful strategy to restore local and indeed national pride, Nigel and his colleagues  composed, arranged, practiced and performed the now cult pop video “Kidney Disease – It’s Chronic" which went on to win the NHIR media competition. 

Like  Engelbert’s first single “I’ll never fall in love again", “kidney disease – its Chronic" has been an instant success and it too is based on organ dysfunction – kidney damage or reduced renal excretory function in Nigel’s song, cardiac problems or a broken heart in Engelbert’s. That is really, where the analogy ends – Nigel’s song is full of hope and describes an easy to use software package that primary care clinicians and practice mangers can use to identify and improve the management of people with kidney disease. It paints a bright future of clinically credible, primary care lead audit where data extraction is based on routine queries of electronically held data and where the focus is on quality improvement personalised to the individual and understandable by our public.

As you, hum “Kidney Disease – its chronic" going about your last minute Christmas shopping and next Tuesday on Christmas morning as the turkey is being prepared. Do spare a thought, and for the religiously inclined perhaps a prayer, for Engelbert now Nigel B and the CLAHRC have knocked him off his perch  but don’t be completely taken in by Nigel’s crooning – remember its not always chronic and that Acute Kidney Injury is the World Kidney Day theme for 2013. I also hear Nigel is resisting calls to follow further in Engelbert’s footsteps and represent his country until the missing millions with CKD have been identified and are receiving management, which magnanimously Nigel points out is as much about reducing cardiac risk such as that  highlighted by Engelbert over a half century before as delaying and preventing progression of kidney disease.

Alarming Diabetic Kidney Disease Data

The National Diabetes Audit published its latest report earlier in the week. It makes disquieting reading for clinicians, policy makers and most of all people with diabetes. It is over 10 years since the studies that showed how much we could do to prevent diabetic kidney disease were published and there is widespread knowledge about slowing the progression of kidney disease so the numbers of people affected are really starling. Less than a quarter of all people with diabetes in this, the largest national audit in the world, were found to be free of the kidney disease complications of diabetes. The fact that “only” 1.8% have advanced, CKD stage 4 and 5, kidney disease is no cause of complacency when nearly 50% of the whole population have macro or microproteinuria and nearly 20 % have stage 3 CKD giving them a massive risk of premature vascular events – heart attacks, atrial fibrillation, stroke, peripheral vascular disease as well as high risk of progression to kidney failure. We must not overlook the fact that in 10% of people with this common condition, a known high risk group in whom we have incontrovertible evidence based simple interventions that work we have no idea if they have early or even late kidney involvement because the routine blood and urine tests that are built into our payment system for primary care haven’t been done. Kidney disease is silent but deadly – we are failing a substantial proportion of our population.

The day before I had been reading about quality measures – “Metrics for quality must be acceptable to clinicians, collectable from management systems and understandable by the public. A simple triad that’s hard to reconcile” was the conclusion of Sir Liam Donaldson and Lord Darzi in their viewpoint article about quality measures comparing the US healthcare system to the NHS as it undergoes fundamental redesign to its structures and accountability mechanisms. Well, far be it from me to take issue with my esteemed erstwhile colleagues at the Department of Health  but these diabetic kidney disease quality measures are I think clinically credible, have been pulled from routine management systems and make sense to our public and patients – perhaps one of the exceptions that proves the rule.

Our former Chief Medical Officer and Minister of State for Health argued that no matter how often the language of quality and safety is spoken by those running the system, the true lingua  franca of healthcare in the United Kingdom is financial. They point to a perceived fundamental difference in the values of clinicians and patients on the one side and healthcare planners on the other. Often the absence of powerful data on quality of care, data that is universally believed and trusted further deepens this rife between managerial and clinical cultures.  Donaldson and Darzi argue cogently for a clinical culture of valuing collecting and working with quality data as a credible scientific endeavour on a par with clinical and molecular research in everyway. Well the future is here, but unevenly distributed!!!

If we are going to live up the rhetoric of “quality is the only organising principal of the NHS” as a credible scientific endeavour, we need to embrace clinical audit and quality improvement as a core component of good clinical practice. Rather than an activity that is tolerated because, management requires it. We have the audit data now we need the quality improvement. Renal replacement therapy is more common that retinopathy or amputation (major or minor ) and CKD is by far and away the most frequent and worrying vascular complication of diabetes affecting  20 times more people than those that have ischaemic heart disease. However, the point is not kidney disease is numerically larger than all the other complications put together rather it is these complications occur together – they are the same disease process - blood vessel injury and most importantly of all CKD is an early marker that we can both prevent and treat. The revised general practice contract with the addition of local quality improvement focused on particular disease pathways commissioned  by the NHS commissioning board through the Quality and Outcomes Framework provides a systematic mechanism for getting this right and avoiding these unnecessary heart breaking kidney  complications of diabetes. We should not go on missing these opportunities.

These qualities metric make sense to clinicians, patients and careers, managers and trust boards. It is time for action.

Kidney Patients Role in Improving Care

Q: The publication of the new Atlas of information about kidney services provided across the country clearly indicates that there is a huge variation in services patients receive, depending on where they live. This post-code lottery is both unfair and unacceptable. What can kidney patients and KPAs do to improve the provision in their area?

A: Yes, it is a postcode lottery and yes, it is both unfair and unacceptable. The Atlas of Variation in Healthcare for People with Kidney Disease collates data across the patient pathway from early diagnosis, choice of type of dialysis, timing of transplant listing, acute kidney injury and even transport for haemodialysis. It is accompanied by a series of case studies and commentaries provided by experts in kidney care highlighting innovations that could be adopted in your kidney unit. Data from a range of routine sources, the Renal Registry, NHS Blood and Transplant and National Audits have been brought together to provide information about how services work and to give an insight into the quality of care provided locally to people with kidney disease.

Of course, it is important to remember that one size does not fit all. For instance, there is not a magic number we should aim for in the percentage of people receiving home haemodialysis or doing peritoneal dialysis. What we need to aim for is that everybody approaching the need for dialysis gets clear information, is counselled and is supported to make the best choice for them. That is unlikely to result in the same percentage of patients being on peritoneal dialysis in Middlesbrough as in West London. Some variation is appropriate to the needs of the local population being served, but in other cases the variations are unwarranted (unwarranted is the polite for - postcode based, unfair and unacceptable) and cannot be explained on the basis of population differences. No one wants to wait longer than is necessary to be transplant listed. No one chooses to be referred so late they have to start dialysis as an emergency in an unplanned way. Very few people would choose to be managed in a kidney service that does not return accurate data to the Renal Registry because that would mean that the unit is not measuring quality of care. Where peritoneal and home haemodialysis rates are low it is likely many more would choose these options if clinical and management teams worked to break down the barriers to home dialysis. 

The NHS Constitution for England brings together, for the first time, the principles, values, rights and responsibilities that underpin the NHS. For patients, these rights include, for example, the right to be treated in a timely manner - this includes live donor transplantation; the right to be involved in all decisions about their care - this includes the right to be told about and supported in having conservative kidney care; and the right to be treated with dignity and respect. For the Constitution to have a real impact for people with kidney disease, people with kidney disease themselves will need to use the Constitution to help drive improvements to patient care and experience in every clinical encounter and every kidney service. The Atlas of Variation is a great place to start asking questions and begin to explore how together patients and healthcare professionals in partnership can provide answers, innovations and improvements in your own kidney unit. Kidney Patient Associations should be working with hospital Trusts, Kidney Care Networks and the new Local Authority Health and Wellbeing Boards to examine the data and set ambitious plans for action where it is needed.

Unwarranted variation in healthcare is of paramount importance to patients, their carers and loved ones. Its existence can signify that the quality of care that someone received in one part of the country may not be good as if they lived elsewhere. Ascertaining why geographical differences in the quality of care occur is complex and difficult but necessary so that equitable healthcare is available for all regardless of their address. Here are some questions you might want to consider putting into your own words when you have looked at the Atlas, which shows your local data compared to other units and localities.

• Chronic Kidney Disease 

Detecting CKD is easy requiring only a blood and urine test. If you or a relative are seeing your GP for a long-term condition such as diabetes, ask them whether you need to be screened for CKD. If you have been given a diagnosis of CKD, ask whether your blood pressure is being maintained in the best range for stopping progression of CKD. Are you on the best blood pressure medication possible? If you are taking, several medications are they safe to be taken in CKD?

• Renal Replacement Therapy

KPAs should ask their renal units if the uptake of RRT matches the prevalence of CKD in the area? How does your unit liaise and foster links with the GP practices? How is your unit planning for their RRT capacity to meet the local demand?

One of the maps shows the proportion of patients who needed to start RRT within 90 days of being referral. If you are on dialysis, how did you start dialysis? Was it planned, with adequate time for you to decide what kind of dialysis you needed? Or did you begin on haemodialysis with a line before having a discussion of whether you would prefer another type of RRT?

Some units have no patients on home dialysis whereas others have almost a third. KPAs should ask their units how much home therapy they are providing. Patients who dialyse at home have better outcomes than those who dialyse in hospital. Is there a discrepancy between provision of home HD or PD? If there is, ask why. You should have the choice of how and where you receive dialysis. 

• Transplantation

 There are large variations in the rate of live kidney donor transplantation across England and the amount of pre-emptive transplantation being performed. If you receive RRT, when was transplantation discussed with you? KPAs should ask whether their unit has a "transplant first" culture. How many patients receive a transplant before dialysis is required? Though transplantation is not appropriate for everyone, it is the form of RRT with the best outcomes.

• Acute Kidney Injury

AKI is a rapid decline in kidney function. People with CKD are particularly susceptible to AKI. In many cases, AKI is easily avoidable through early recognition. KPAs should ask whether their trusts have early warning alert systems in place. And is a clinical audit of AKI being performed?

• Transport

Transport to dialysis is a frequent cause of distress for patients. KPAs: ask your unit who is responsible and accountable for patient transport arrangements. Are there incentives for patients who can make their own way to do so?

None of the data in the Atlas is new. It is all drawn from the standard NHS databases and various annual reports. In a way, the Atlas of Variation is holding a mirror up for us to see the variation in general practice, kidney units and hospitals across England. It shows the good, the bad and the ugly of kidney care. Of course, every kidney service cannot and indeed should not be the same. Communities in Devon and Cornwall are different from those in Birmingham and Coventry. That said, the Atlas does reveal that where you live determines the service you will receive and it should provide a stimulus for healthcare planners and funders, General Practitioners and kidney care healthcare professionals and most important of all patients and local kidney patient associations to examine the quality of care provided in your kidney units and general practices.

I would urge all kidney patients and carers with their local KPAs to look at the maps; to discuss the maps with doctors and nurses and Chief Executives; to ask questions and expect to be involved in drawing up action plans to improve care. People with kidney disease are very powerful, few patients realise that questions and comments from patients are heard and do make a difference. That is quite right, only patients and carers know what it is really like to have kidney disease, only patients and carers can really judge the quality of service they receive. The NHS is going through difficult times, patients must shape the service. Use the Atlas of Variation to do that. Ask those questions and remember, if the answer is "oh well, that's the way it is around here", keep asking "why?" until you get a proper answer. People reading Kidney Life have the understanding, you have the power, and you therefore, have the responsibility to help improve services in your local community. No one else can do it better.

Published in Kidney Life - Autumn 2012

  

Acute Kidney Injury in Edinburgh

The Royal College of Physicians of Edinburgh attracted a large and diverse audience to its UK Consensus Conference on Acute Kidney Injury (AKI) last weekend. Supported by NHS Kidney Care it examined three main themes in the management of AKI:

-         the role of fluids,

-         e-alerts,

-         biomarkers

All areas that are not covered in the NICE AKI Clinical Guideline due to be published for comment on World Kidney Day – 14^th March 2013.

The consensus event was developed against the backdrop of the NCEPOD Report – Adding insult to injury  that showed widespread clinical failings, resulting in 50% of patients who died receiving an inadequate standard of care. Professor Sir Ian Gilmore, immediate, past President of the Royal College of Physicians of London and Professor John Feehally, President of the International Society of Nephrology, co-chaired the consensus panel that heard thoughtful presentations from colleagues across the UK and international experts. There were also some excellent posters describing a range of research studies and quality improvement projects in AKI from Scotland and England.

The key recommendations included:

-         doing the basics well; improving training and education of clinical teams, agreeing referral criteria for specialist input, and scoring systems that better defined patients at risk of AKI needs to be developed and validated for wider use;

-         A system of e-alerts, in which doctors receive automated instant messages advising them of abnormal biochemical results, indicating that their patient has evidence of AKI, should be implemented throughout the NHS. This will facilitate rapid treatment and medication adjustments. A national group should be established promptly to develop the standards for e-alerts; and

-         All hospitals must have fluid therapy guidelines that will aid resuscitation of patients, and identify the fluids that are most appropriate for replacement and maintenance.

Optimal care could save up to 12,000 lives a year and produce substantial savings. There are things that can be done now to put the NHS in a better place to effectively implement the NICE Clinical Guidelines on AKI when they come out early next year. E-alerts are not a quick fix. They need leadership to be accompanied by training, agreed cared bundles and clinical audit and leadership. Fluid therapy should be guided by repeated evaluation of volume status. Clinical assessment of volume status is difficult and there is no short cut for regular re-evaluation based on history, cumulative fluid balance, daily weights and clinical examination.

The consensus conference concluded that there are lots we know that we need to do now. A systematic approach to AKI as part of the risk assessment and management for all acutely unwell patients is required, but there are still a lot of unanswered questions across the whole spectrum of Acute Kidney Injury not least, in the three areas of biomarkers, e-alerts and fluid therapy. Improving basic care has to be our first priority – make 2013 the year of identifying and improving AKI in the NHS.

Yesterday in Parliament

While Americans were focusing on their election, matters in the United Kingdom Parliament turned to Adult Polycystic Kidney Disease. Madeline Moon, Labour MP for Bridgend had been successful in the speakers’ ballot and chose Polycystic Kidney Disease as the topic for the ‘End of Day Adjournment Debate’ on Tuesday 6^th November 2012.

Anna Soubry, the Parliamentary under Secretary of State for Public Health congratulated her honourable friend on securing the debate and paid tribute to the excellent work undertaken by the Polycystic Kidney Disease charity.  Anna Soubry went on to emphasise the importance of raising awareness of Chronic Kidney Disease, commenting that although 2.3 million people are now on primary care registers for CKD in England there is more work to do. She underlined the importance of research, citing the three studies, which are being hosted by the National Institute for Health Research, and drawing MPs attention to the TEMPO (Tolvaptan Efficacy and Safety in Management of Autosomal Dominant Polycystic Kidney Disease) reported at the American Society of Nephrology meeting in San Diego last week.

The Minister concluded by speaking about the importance of the quality of life in people with chronic kidney disease. Drawing attention to the Quality Standard for CKD published last year by NICE, which clearly states that patients with a genetic family history of Polycystic Kidney Disease should have access to specialist care, and support to optimise their quality of life and clinical outcomes.

Social care in the last year of life

With an increasingly elderly, frail and co-morbid population, the need to coordinate health and social care is becoming more and more apparent. One could argue that integrating health and social care is the big issue facing the NHS and our care services.

The Atlas of Variation in social care published earlier this year, examined the quality of social care services in England. Like our Atlas of Kidney Care and the other health care atlases, it showed high variation in access, uptake, costs and quality – a postcode lottery. The social care atlas mapped its data to the Adult Social Care Outcomes Framework:

-         Enhancing  the quality of life of people with care and support needs;

-         Delaying and reducing the need for care and support;

-         Ensuring people have a positive experience of care and support;

-         Safeguarding adults whose circumstances make them vulnerable and protecting from avoidable harms.

A large read across to the NHS Outcomes Framework don’t you think? Any reasonably minded person can see the link between the various outcome frameworks from Public Health, NHS Outcomes, by which the Secretary of State for Health will hold the NHS Commissioning Board to account, the Commissioning Outcomes Framework to help deliver on those health aspirations and the Social Care Outcomes Framework. If they were all playing in concert, it would sound more like Schönberg than Mozart would. The staff in the various sectors are not working together yet, and we do not routinely join up information. Good health care leads to recovery and return to normal living. Poor health outcomes have their consequences in the lives of families of those affected, in the metrics of the Department of Work and Pensions, along with the social care needs of the individuals.

When it comes to the last years of life, social care needs are clearly as relevant as health care intervention. In conservative kidney care it really is not about the kidney, it is about the individual their experience, their family, carers and friends.

An atlas of variations in social care: an analysis of the quality of social care services in England, June 2012. MNP Health Mandate

What role should social care play to support someone at the end of life to die in his or her own home? In addition, how can health and social care services work together to make this choice a reality?

A thoughtful and groundbreaking study published by the Nuffield Trust adds significant weight to the argument that with the right support people could die at home, as they wish.

The report vastly improves our understanding of the costs of caring for people at the end of life and encourages a debate on what role integrated, coordinated care can play in keeping people at home in their last days.

“Our ageing population and over stretched health service means that the NHS will not be able to meet the rising costs of people being admitted to hospital unnecessarily at the end of life.”    Ciaran Devine CEO at Macmillan Cancer Support and Non-executive member of the NHS Commissioning Board

You will not be surprised to learn that understanding patterns of health and social care at the end of life also, reveals the large variations in access, uptake and costs.

 Understanding Patterns of Health and Social Care at the end of life, October 2012. Nuffield Trust 

The Nuffield Trust work shows that the cost of caring for someone in hospital increases sharply in the final few months of life- especially for emergency care. The costs can be as much as £90,000 per person. Social care costs, however, are more predictable and constant and home care is on average considerably cheaper than hospital care. Note the different scales on the vertical axis comparing the hospital and social care costs in figure 4.4 from the report above.

Care for people at the end of life needs to improve as a matter of urgency. This Nuffield  report chimes with what I have heard from kidney, primary care and social care professionals, about how it is often help with small things, can make a big difference fro patients and families, and is crucial to keeping people out of hospital at the very end of life. We should seize the opportunity of the current flux, we find ourselves in health, the financial challenges our Local Authority, and Health and Wellbeing boards are under to make step change  improvements in end of life care and deliver on the NICE QualityStandards.

Transplant sharing Gurus win Nobel

I rarely read the finance pages. They always seem rather dull reporting what the Roman Emperor Augustus is supposed to have coined “festina lente” which means, “making haste slowly”. The alternative phrase given the progress made with the global economy over the last few years might be “getting nowhere fast”.

However, this headline caught my eye the other day. “The Nobel Prize for economics has been awarded to Americans Alvin Roth and Lloyd Stapley for their independent work on how best to bring different parties together for mutual benefit”

It is not really a Nobel Prize, the economics Nobel Prize committee award is a more recent introduction than the inaugural Nobel Prizes and it has a lengthy name. You can look it up on Google. Professor Shapley did the underpinning maths way back in the 1990s and Professor Roth applied them to develop algorithms for all manners of situations. He used dating as an example, I think to get attention rather than to set-up a dating agency, as my paper implied. The algorithms were not actually designed to arrange marriages. They were to analyse ways to match things up. Roth and Stapley discovered a rule that allowed the best matches to be made for schools and schoolchildren, medical students and their first hospital jobs, and most importantly  as the newspaper said setting up life-saving kidney transplant operations. 

They got the Nobel Prize for that – well done Roth and Shapley. They developed something that actually works rather than trying to perfect an abstract model. In recognising the ethnical and cultural constraints in the real world and working with them, they provided the basis for an allocation system that works in our imperfect world. A lot of theoretical economics deals in perfection; Roth and Shapley were interested in answering the question “how do we get this to work for the benefit of everyone?” not how do we achieve perfection. Congratulations to Professors Roth and Shapley

Olympic Legacy

Whatever your highlight of the London Olympics – the Queen parachuting, Mo Farah’s 10,000 metres or Chris Hoy’s sixth gold medal; attention is now turning to the question of “What legacy for the UK?”

The National Centre for Sports and Exercise Medicine, which is a £10 million Olympic legacy building at Loughborough University, includes as the name says exercise medicine- for staying healthy, recovering from illness and becoming healthier while living with a long-term condition as well as sports medicine, which is sometimes, focused on elite athletes. I am hoping that all the interest in exercising in chronic kidney disease, particularly the recent call from the National Institute for Health Research for a randomised control trial to assess exercise on dialysis- aptly named PEDAL by Iain MacDougall and Tom Mercer the lead investigators, will put kidney disease in pole position for the development of renal rehabilitation programmes as a top priority.

In the meantime, Hannah Young from the Leicester Kidney Exercise Team sent me the link to the Virginia cycling on dialysis website, which has loads of resources and information on intradialytic exercise, developing and implementing exercise programmes. The link is http://www.healthsystem.virginia.edu/pub/renal-services/exercise .

If health ranks as highly in the Olympic legacy as the NHS did in the opening ceremony, we will have moved a long way. The paradox of 1000s of hospital beds representing the NHS, when the thrust is to grow primary and community care capability, including self-care and staying healthy did make me chuckle.

Brilliant but horrendous

In Saturday’s British Medical Journal, Nicholas Evans author of the best selling novel ‘The Horse Whisperer’ and Renata Carey each provided a commentary of their experience with dialysis. In Nicholas’ case, he also describes the emotional challenges and transformational benefit of receiving a kidney from his daughter.

Both accounts should become compulsory reading for anyone wanting to understand kidney care, and the importance of humanity in end stage renal failure management. Nicholas’ story is dramatic, one might say the stuff novels are made of- mushroom poisoning in Scotland that left his wife and himself prostrate. “We had black diarrhoea and nausea and wretched every few minutes until all that came was blood and bile”. Both had irrecoverable acute kidney injury causing sudden onset end stage renal failure. The narrative is eloquent and moving as befits Nicholas’ profession.

In the commentary on Renata’s story Mark Harber, consultant renal physician at the Royal Free Hospital notes that diabetes and hypertension are very common causes of chronic kidney disease and renal failure, and that thousands of patients with diabetes and renal impairments will echo Renatas’ history.

Lets leave Renata with the last word: “To summarise: dialysis is brilliant, of course, but deeply horrendous. The people running it must be selected for heart, intelligence, and imagination. Above all they need heart and humanity”

Arriving Late…Fewer than in the past but still too many and not enough choice

It is evitable that some people with advanced kidney disease will require dialysis shortly after they have been identified and without the planning and preparation required for good outcomes. How many of these people have had missed opportunities to either delay progression or plan for a more informed and better start to transplantation, dialysis or conservative kidney care?

Being well prepared, having the space to make decisions about the future, being encouraged to bring concerns and aspirations into the frame, takes both time and multi-professional support. That is why the preparation and choice part of the CKD pathway is included within the specialised services commissioning of Renal Replacement Therapy specification, which builds on the NICE Quality Standards for CKD. We know what looks good - being referred in a timely fashion, having time and support from the various members of the multi-professional team (working as a team) and ultimately, encouraging people with advanced kidney disease to make the right choice for them at that point in time. We can also measure these elements of the pathway, so I was interested to read the PAN Thames audit groups report on The Patient Experience: the treatment pathway of patients starting dialysis as an emergency.

The audit provides a detailed review of the issue of late presentation and commencing dialysis as an emergency across the Pan Thames area. Twelve kidney units participated fully, and one partially, leaving only two units in the region that did not get involved. It covered a three-month audit period with a further three months of follow up and assessed the options, support and treatment of 72 people presenting late to an equal number who received pre-dialysis work up. The methodology could be tweaked by any kidney care network to examine the situation elsewhere.

There was no difference in the age of late presenters and planned starters but they were different in nearly every other respect. Late presenters included a higher proportion of people from the black and ethnic minority origin. They were more likely to receive only verbal information. After three months of follow-up only 20% of late presenters received dialysis through an arteriovenous fistula compared to 65% of planned starters; only 11% of late presenters were transplant listed, compared to 39% of planned starters. Two of the 30 units did not have specific pathways for patients starting dialysis as an emergency.

Patients’ comments ranged from “I would appreciate more discussion on how I am coping with dialysis. Each session leaves me weak and dizzy. I would like to know if this is likely to continue and what the prospects are for reducing the side effects.” (Late presenter)

“My transition to dialysis was well managed and smooth. I am impressed by the professionalism and courtesy of the large number of staff with whom I interacted with as part of this process” (Planned starter)

Patient quotes are invariably valuable and insightful. This audit provides four pages of detailed individual patient comments- well worth reading, whether you are from the Thames region or not. Patient experience is one of our blind spots and studies like this one will fill that gap.

At unit level, late presentation was a feature in between 0-37% of cases. It may have been that the audit period was not long enough to interpret this variance- some of the numbers were quite low. I was however pleased to see that in the bigger units, those accepting more than 40 people onto their dialysis programme during the three month audit period, only one had greater than 15% late presenters- well done, Bart’s (11%), Kent (10%), Kings (14%), Royal Free (21%) and St. Heller’s (15%). These findings are consistent with the downward trend that the UK Renal Registry has reported. With a national fall greater than 30 % of people starting dialysis as an emergency a few years ago compared to 19% in the most recent report. They also suggest that there is still considerable room for improvement in timely referral preparation and choice.

Sue Cox, a Consultant Nurse at Guy’s, Kellie Blane and Joanna Pope NHS Commissioners and Carrie Gardner the Project Coordinator; who led the project, made some specific recommendations including:

1. That all kidney units should have a late presenters pathway which includes an education programme;
2. Information should be audited and improved;
3. Root cause analysis should be undertaken so the reasons for late presentation can be identified;
4. Modality of replacement therapy and vascular access should be formally reviewed; and
5. Renal centres should work with primary and community care to improve systems for early identification of deteriorating kidney function. 

It is encouraging to see this important area has been audited, progression in late referrals and root cause analyses across the patient pathway, including primary and secondary care should help keep this on the agenda with emerging clinical commissioning groups. There is work to be done on improving choice for these vulnerable patients

Probably the best self-dialysis unit in the world

Swedish films have a reputation of being rather dark and sombre, and perhaps best epitomised by Ingmar Bergman- whose major subjects were about death, illness, faith, betrayal and insanity. This short film, “probably the best self dialysis unit in the world” is very different- very inspiring about the pioneering work undertaken in Jonkoping Sweden, showing patients undergoing hospital dialysis, managing their own care and lives. It is in Swedish with English subtitles and lasts less than 5 minutes.
It has echoes of the Stepped Self Care Work developed as part of the Guys, St. Thomas and Kings renal modernisation project a few years ago. The Yorkshire and Humber Kidney Care Network are attempting to emulate aspects of the Swedish approach, through their health foundation sponsored self-care dialysis programme which is looking very exciting.

Why real life needs real trials?

I have often thought that if only politicians and civil servants had a “How-to-book of randomized policy trials” there would be a better understanding of the roles scientific approaches can play in setting policy goals and improving care.

I need wait no longer. The rational and power of randomized controls trials has now been laid out in a short paper as a result of a collaboration between two academic experts, Professor David Torgerson and Dr Ben Goldacre, and two civil servants, Laura Haynes and Owain Service, of the cabinet office’s behavioral insights team.

 

Randomized trials are important in policy work for exactly the same reason that they are important in medicine; because our theories about what works are often badly wrong, and in a complex world it is often only a properly controlled trial that will set us straight.

In the Test, Learn, Adapt: developing public policy with randomized control trials. Might sound a little bit of a mouth full, but it’s a short and easy read. It debunks a lot of myths, provides a simple how to guide and gives several examples demonstrating how randomized control trials can make drawing conclusions from new policy vastly simpler and more robust.

Tim Hartford, the undercover economist, in the financial times even waxed lyrically about the paper and commented that the culture in government often has little knowledge of or respect for basic scientific methods. What matters is what works. But finding out what works is a serious business. Hopefully, test, learn and adapt will become part of the reading list for fast stream civil servants and members of parliament.  

Facts and Figures

If you haven't yet arranged for screensavers to celebrate Transplant Week which is from Monday 9th July 2012 - Sunday 15th July 2012, look no further - NHS Blood and Transplant have made some great graphics.