Gunther von Hagens highlights amazing kidneys

Tess Harris, Chair of the Polycystic Kidney Disease Charity organised a reception in the machine room of the MOSI – the Manchester Museum of Science and Industry to celebrate amazing kidneys and the amazing people and families who have adult polycystic kidney disease. Families with polycystic kidney disease are in a special position because of their experience of renal failure in the family, the previously thought inexorable decline in kidney function and inevitability of end stage kidney disease and the fact that opportunities for live donation are less.

I recently had to comment on the impact of the genetics white paper “Our inheritance, our future – realising the potential of genetics in the NHS” that was published in June 2003. By chance, as I was compiling a response Tess sent me the following (spelling unchanged from the original):

“I just wanted to say hello really, I found out I had PKD 2 years ago, after my mum found out she had it, it also emerged that my nan had it too and was on dialysis for 12 years before she died. I saw my GP who referred me for a ultrasound. Lovely NHS gave me the ultrasound and the radiographer told me I had polycystic kidney disease. That was it no supportive sympathetic chat nothing just goodbye. I went and sat in my car in the car park and cried my eyes out. Had 3 appointments since then with renal department, who take blood but I have yet to know the results of the tests, all a bit crap really. Anyway that’s my story so far”.
Young person contacting the PKD online support group 18 February 2008.

There is a huge need for better genetics education, not only for medical professionals but also for allied health professionals and nurses as renal care is becoming increasingly nurse led and of course for genetic counsellors.

I am encouraged by the amazing work our colleagues in genetics and molecular biology have done to explain the underlying processes that lead to cyst formation. Clinical trials are also underway and hopefully will delay kidney damage in this condition.

There is lots we can be doing already. Andy Williamson, Saxophonist with Big Buzzard and the Organ Grinders who led the jazz quartet at the MOSI PKD reception was told “don’t worry about the cysts, there’s nothing you can do about it”. Well, no magic wand but with better blood pressure control the need for dialysis would have been delayed and with planned management, Andy’s live donor transplant from a fellow musician could have been done before Andy needed to start dialysis. Why does it take up to two years on dialysis to transplant list somebody with polycystic kidney disease? Why aren’t the overwhelming majority of people with PKD listed pre-emptively??

Tess and her colleagues arranged for a polycystic kidney that had undergone plastination – Dr von Hagens groundbreaking method of halting decomposition and preserving the body and organs, to be on display at the reception. It was amazing as were the other normal, abnormal and diseased kidneys that he had on show in the main exhibition. Plastination is the process of extracting all bodily fluids and soluble fat from specimens and replacing them with vacuum forced impregnation with reactive resins and elastomas such as rubber, silicone and epoxy. The specimens are then cured with light, heat or certain gases to give ridigity and permanence. In addition to highlighting amazing kidneys, the exhibition includes particular emphasis on sport and exercise. It is amazing.

Lord Darzi is making a habit of this (World Kidney Day 2008)

Lord Darzi stepped into the breach to address the All Party Parliamentary Group on Kidney Disease reception hosted by Evan Harris MP for World Kidney Day at the Houses of Parliament on 13 March. Ann Keen MP (Parliamentary Under Secretary for Health) was due to speak but illness meant she had to send last minute apologies. Having last week recorded a video message to the Clinical Directors Forum, Lord Darzi’s new found kidney knowledge came in handy. Ara Darzi talked about the profile that kidney disease was now receiving in the long term conditions workstreams of the next stage review – Our NHS Our Future, what we refer to as the Darzi review. He emphasised the preventative dividend of more effective public health strategies for vascular disease, the need to integrate kidney care into vascular risk assessment and management programmes and the importance of involving individuals in their own care planning. Having promised not to use the polyclinic word, but having minutes before shown me a facsimile from 1948 announcing the creation of the National Health Service that talked of health centres where you might not see your own GP for treatment, he did talk about dialysis closer to people’s homes. Lord Darzi reiterated the goal of increasing cadaveric transplantation by 50% over the next 5 years. Finishing by confirming the commitment to a comprehensive end of life strategy that would support people who choose the no dialysis option, Lord Darzi had in fact covered the whole kidney disease pathway.

Consummate though the Parliamentary Under Secretary of State for Health speech was, the story Fiona Loud (Chair of the Kidney Alliance), told was even better. Fiona’s experience of chronic kidney disease, both modalities of dialysis and eventually live donor transplantation made the policies, stages of kidney disease and clinical guidelines real. You can find out more about Fiona’s story and what it is really like to live with kidney disease from the Kidney Alliance DVD “living with kidney disease” which can be ordered from the website . I hope that this DVD will be available to any person with kidney disease.

Evan Harris (MP for Oxford West and Abingdon) spoke eloquently about the policy context , reminding us that the Renal NSF was the first without targets and the need therefore to measure the achievement of its vision very carefully. The wishes in the National Kidney Federation time capsule that he sealed and that will be reopened in 2013 will provide that scrutiny. We also of course have other informative metrics by which to judge progress – pre-emptive transplant listing rates, vascular access and MRSA rates but we do need more and these need to cover all the patient pathways.

Many Peers and Parliamentarians in addition to patients, carers, live donors and representatives from the whole kidney care multiprofessional team attended. It was a good mix to raise the awareness of kidney disease as a major public health issue for our population.

Food at the event was provided by Lawrence Keogh, celebrity chef from Roast in Borough Market. Lawrence, who is also a transplant recipient, had spent the morning on radio with Paul Stevens (President of the British Renal Society) and Fiona talking about and answering questions on kidney disease.

bedtime reading: NICE CKD consultation (11 March - 6 May 08)

A clinical practice guideline on Chronic Kidney Disease is being developed for use in the NHS in England, Wales and Northern Ireland. Registered stakeholders for this guideline are invited to comment on the provisional recommendations via this website.

Consultation dates 11 March - 6 May 2008

Amazing Kidneys - Happy World Kidney Day!

Happy World Kidney Day , there are lots of events going on up and down the country - what are you doing today to promote better kidney care ? And what are your plans to deliever better kidney care tomorrow and the day after ?

Every little bit we each do has the potential for a massive impact on the experience and outcomes for people with Kidney Disease

Amazing Kidneys

WKD UK
WKD

Integrated vascular control programmes

We have heard much talk that CKD spells cardiac, kidney and diabetes over the last few years. Speaking with practice nurses, integration is now becoming a reality for some patients. The publication of “The Handbook for Vascular Risk Assessment , Risk Reduction and Risk Management” or “the blue book” as we have come to know it over its long gestation, by the National Screening Committee should help drive co-ordinated vascular care. It draws together the evidence base and best practice models that can be adopted or adapted for local use in practices or across primary care organisations.

Melanie Davies (Professor of Diabetes Medicine at the University of Leicester) and her team have done a sterling job of sifting and compiling the literature. CKD is flagged as a vascular risk marker and the benefits of early detection followed by risk assessment and management are highlighted. If there is a feeling that kidney disease doesn’t get the same sort of look in as diabetes then that frankly reflects the amount and level of evidence in diabetes care compared to early CKD. If we, the system – because that is what the NHS, us; achieve the level of integrated care and quality of risk management that has already been achieved by individual earlier doctors of the approaches cited in the blue book a lot of people with stages I-3 CKD will benefit. I have also added it to the bedtime reading list of the blog but at 150 pages it’s really a document for the team to dip in and out of and from which local services can pick and mix the tools they wish to employ to manage vascular risk for individuals in their populations.

bedtime reading: integrated vascular control programmes ("the blue book")

The publication of “The Handbook for Vascular Risk Aassessment , Risk Reductionand Risk Management” or “the blue book” as we have come to know it over its long gestation, by the National Screening Committee should help drive co-ordinated vascular care. It draws together the evidence base and best practice models that can be adopted or adapted for local use in practices or across primary care organisations.

An away game in Europe

While Cesc Fabrigas was preparing psychologically for Arsenal’s historical encounter with AC Milan at the San Siro stadium on Tuesday 4 March, MEPs and policy makers were attending a European Kidney Health Alliance (EKHA) Seminar at the Parliament in Brussels. The EKHA is an alliance of not-for- profit organisations who represent the key stakeholders in kidney health issues in Europe. The member organisations are CEAPIR (European Kidney Patients Federation), EDTNA/ERCA (European Dialysis and Transplant Nurses Association/European Renal Care Association) ERA/EDTA (European Renal Association/European Dialysis and Transplant Association) and the ISN (International Society of Nephrology). Andy Rees (recently a Professor of Medicine in Aberdeen and a past President of the Renal Association who is now working full time in research in Vienna) chairs the Alliance. EKHA takes a multi-disciplinary approach involving patients and their families, doctors and nurses, researchers and other healthcare professionals who work co-operatively for a European health environment in which there is a sustained decrease in kidney disease and its consequences.

Mrs Freda Brepoels, (MEP, EPP-Ed Shadow Rapporteur ‘Organ Donation and Transplantation: Policy Actions at EU-Level’) hosted the event. Valerie Twomey (Patient) set the scene with a beautifully measured talk about what CKD, various forms of dialysis and transplantation had meant for her. Valerie worked the MEPs and others like a true master – plenty of body language, questions to the crowd and pauses as well as animation and cool graphics in the talk. One of the slides showed a poem a friend had written about donation. The deadpan voice-over in the manner of a railway station announcement rang out “organs not required at your onward destination” that’s to give you a flavour at what the kidney care professionals were up against!

Karen Jenkins (Renal Clinical Nurse Consultant in Kent and Chair of European Dialysis & Transplantation Nurses Association/European Renal Care Association CKD Group Chair), brought care planning to life by weaving a picture of the added value that each member of the multi-professional team contribute across the whole spectrum of kidney care. Paul de Jong (Professor in Nephrology from Groningen, Netherlands) presented the compelling data from the Prevend and other studies implicating proteinuria as one of the main therapeutic targets that must be controlled to achieve the “preventative dividend” of early detection. I spoke about our UK policy initiatives and our early experience with a structured managed care approach to CKD. Andy Rees summed up proceedings and the audience probed the panel on the health economics, linkage between CVD, diabetes and CKD and strategies to improve outcomes for people with kidney disease. Mrs Brepoels had listened carefully and contemplatively throughout. I think she will be a good ally in raising awareness in policy makers. From conversations afterwards, Frieda clearly had a good grasp of the issues.

At the reception we were treated to a medley of dialysis songs from the Brussels kidney community. Lyrics had been written by people on dialysis and the performance, sound engineering and CD production was co-ordinated by Vera Vertessen (Transplant co-ordinator at the University Hospital of Brussels). It gave an insight into the life and emotional relationship people on haemodialysis have with the machine. Everyone involved in that project is a member of the Brussels multi-professional kidney care team.

Oh, and by the way, I did get to see Ronaldo score his 30th goal this season, not from my seat at Old Trafford but from a sports bar in Brussels – through to the next round!

Photographs
listen - "close to you" is about the relationship between dialysis patient and haemodialysis machine
watch & listen - video clip of the dialysis song "close to you" (You Tube)

Payment by Results for Dialysis, the first peice of the jigsaw

This week I wrote to all the Chief Executive Officers and Directors of Finance of the 53 Acute Trusts providing renal services in England and the 10 Specialised Commissioning Groups to update them on the work of the Renal PbR Group and have included copies of the letter and the checklist here (also posted under bedtime reading). Information will be presented in detail at the Clinical Directors forum on 7 March 2008.

The Renal PbR Group was set up following the consultation on the future of PbR last year and brought together clinical directors and finance directors from 16 Acute Trusts. We focussed on dialysis costs as the key revenue driver for the first piece of work. Together the units provide over 40% of the dialysis in England. Reviewing the financial returns that each Trust must make each year revealed a number of anomalies and indeed errors that we hope the template the group developed and the clarification in the frequently asked questions published to complement the reference costs returns manual will help correct.

BUT the success of the PbR project was the bringing together of the clinical and finance leads to work alongside each other on the coding, attribution and costings. AND that’s my message too – closer working arrangements between the finance and renal departments are needed. I hope this will be achieved in the next costing round that Trusts are just embarking on.

Another key part of the Group’s report will be the emphasis at the start, in the middle and at the end that dialysis isn’t the only thing kidney care services provide. The quality of dialysis care and the outcomes are dependent on support and preparation of individuals with kidney disease receive. Kevin Harris (Clinical Vice President of the Renal Association) and Donald Richardson (Consultant Renal Physician, York) are helping me draw up plans to ensure that the “year before replacement therapy” and supportive and palliative care are not forgotten.

Bedtime reading: PbR for dialysis, the first peice of the jigsaw

This week I wrote to all the Chief Executive Officers and Directors of Finance of the 53 Acute Trusts providing renal services in England and the 10 Specialised Commissioning Groups to update them on the work of the Renal PbR Group and have included copies of the letter and the checklist here. Information will be presented in detail at the Clinical Directors forum on 7 March 2008.