New kidney transplant targets announced

Tony Ward - Transplant recipient, mountaineer, husband, father and great advocate for kidney care carrying the Olympic torch

The UK lags behind many countries in Europe and North America in rates of kidney transplantation despite strong public support, a series of initiatives over the years and an undisputed economic case. The Organ Donation Task Force report published in 2008 set a goal increasing organ donation by 50% by 2013. Importantly, under Chris Rudge’s leadership, it implemented the infrastructure needed to move organ donation from a somewhat haphazard variably event to be regarded as a usual occurrence in hospital as part of a planned and resourced system of care. Much of that work is now complete and the recent .focus has been on driving processes to increase the level of organ donation to reach or exceed the 50% increase target set nearly 5 years ago. Progress has been slower than anyone in the kidney community would have liked, but the foundations are now solid and I was pleased to see more ambitious organ donation figures in the new NHS Blood and Transplant strategic plan 2012-17.

Predicting the future is always difficult! I recall a comment from a good friend some 15 years ago, when the Greater Manchester Renal Project Group estimated future demand and came up with a figure of 978 patients requiring dialysis some 5 years into the future. Not 960, not 980, not nearly a thousand but 978! Colin Short, recently retired consultant renal physician at Manchester Renal Infirmary, said, “You're wrong- I am just not sure by how much!” Colin was of course correct. Ranges are better than precise targets. Even though some will regard a 60% increase in deceased organ donation by 2017 as modest, no one is saying lets get to 4480 transplants and stop!! Let us aim to break the 5000 barrier sooner rather than later.

The NHS Blood and Transplant plan has some detailed objectives to build on the infrastructure now in place. This needs to link with the black and minority ethnic (BME) manifesto to improve organ donation and transplant rates in these communities. The manifesto was launched on March 7th, World Kidney Day, in the House of Commons by the all-party kidney group and consists of 4 strategic challenges and 12 specific action points to help raise awareness, encourage greater donation rates and optimise access to transplantation among BME communities. It is excellent that Kirit Modi the Vice Chairman of the National Kidney Federation is now co-chairing the implementation of this initiative.

Finally (for now), and last but not least, it was great to see Chris Rudge – former Chief Executive of UK Transplant and National Clinical Director for Transplantation, along with Jonathan Hope- previous chair of the Guy’s, St. Thomas and King’s College Hospital, kidney care modernisation initiative recognised in the Queen’s special birthday honours this year.

Variation - the good, the bad and the downright ugly

The NHS Atlas of variation and the interactive online maps demonstrate the postcode lottery of kidney care provided across the country. Some of this will represent strong local ownership and integration of care. The population of Bradford and East Kent are very different – they are highly unlikely to want precisely the same pattern of care. They are both fortunate to have local kidney care teams using IT to integrate and improve services.

Variation based on the needs and priorities of the local people is to be applauded. Unwarranted variation – due to resource constraints, clinical bias in primary and secondary care or failure to integrate service provision across the whole pathway of health and health care - is ‘the bad’. That said the fact other teams can do so much better at timely referral to kidney services, early transplantation and supporting home dialysis options should become the focus for local quality improvement – variation shows what can be achieved! The ‘downright ugly’ is the poor quality coding that makes a mess of the data captured – coding needs to be seen as an integral part of clinical care. We can only improve when we can define and measure what we do in both the individual case and the community we are part of .

Exploring the questions that the Kidney Care Atlas raises should prompt improvements in the local organisation of care delivery. Building on the best examples that currently exist. Promote a shift to establishing shared decision-making systems between patients and healthcare professionals as the norm for preference-sensitive care such as choice of modality of renal replacement therapy or whether to opt for conservative care. In addition, strengthen the science of healthcare delivery to foster innovation and put effective care delivery on a solid scientific foundation.

The Kidney Care Atlas is a landmark in the study of variation in kidney care in England. Data from the UKRR and QOF, as well as other datasets, have been used to illustrate how aspects of healthcare specific to kidney disease vary. The maps highlight only 18 of potentially numerous indicators relating to kidney care. They represent a sample of the variation in value and quality in renal services across England.  Identifying, mapping and attempting to address unwarranted variation should not be regarded as independent pursuits, but instead be perceived as intertwined with the quality improvement agenda for renal services. Have a look, share it, ask questions about your place on the map, discuss the issues with patients and set some local goals.

Think about rationing

 Resources for health care be they people, knowledge, time or money are and always have been limited. Rationing seems to be a word not terribly much used in polite company. For the kidney community it has uncomfortable connotations harking back to our history of slow uptake of dialysis and hospital committees to decide who will be the lucky few.

I remember as a house officer presenting the clinical details of individual patients with end stage renal failure in the seminar cum coffee room. Followed by the nursing assessment of suitability and ability to cope, social work comments on employment and family circumstances and then a discussion about who would benefit most, what the implications for the dependents might be and how to allocate resource. Said another way, who should be started on dialysis, it was not really an offer, and who did not make the cut because of the limited dialysis space that we had available. Back then the acceptance rate was about 32 per million of the population per year compared to 110 PMP now. Peritoneal dialysis was just about to start. Occasionally, a space did become available when sadly; a dialysis patient died or someone was transplanted. It was a time, when uraemic frost and pericarditis were frequent clinical signs and the management of the intractable hiccups of renal failure were second nature to our ward sister who taught us  the ropes and kept us in line.

While those days are long gone, concerns about resources, choice for patients and the prospect of a return to rationing are again rising. The Nicholson challenge, to save £20 billion pounds over the next 4 years, has bought health care costs centre stage in England. Other western economies face similar financial challenges. In the USA for instance, the spending on health care is predicted to rise to 19% of gross domestic product by 2019. That is only 7 years off and it would be nearly double the UK cost. Our populations are also aging and the number of adults of working age  in the UK  to the elderly will  halve in my lifetime. The pattern of disease is changing from acute to long-term conditions; from single conditions to multi-morbidity and from health care managed to self-care.

So, “can you cut health care spending without undermining the quality of care?” yes, there are significant inefficiencies, yes, we can do things differently and yes, the “new technology” can help, but it is still the £100+ billion pound question. I am a believer that we can have a healthy population, deliver efficient and effective health care and support self-care with the resources we have as a nation. We need to tackle some of the wider determinants of poor health and outcomes- poverty, education, joblessness; be good stewards of the NHS and promote greater health literacy and self-management. There are many individual examples of high quality and high value care that costs less than traditional models of care in the kidney world and wider health economy. I do not know if we could deliver the Nicholson challenge by adopting all these practices more widely but I do know that the more people who do adopt them, the more likely we are to achieve our quality and financial goals.

To invest in higher value activity, we will need to disinvest in lower and no value activity. Therein lies the problem and perhaps lurks rationing. There are few things we do on purpose in health care that add no value to anyone.  Unsafe practice that causes harm is perhaps the exception- of course that is not done on purpose. Certainly unnecessary falls resulting in fractures, health care associated infection and drug errors are still common, and do cost an awful lot of money. I doubt we can save £20 billion pounds from better safety alone. 

So the publication Thinking about rationing by Rudolf Klein and Jo Maybin from the King’s Fund is certainly timely. The authors argue that rationing has been a fact of life for the NHS since its launch and that it is going to be a dominant issue in the hard times ahead. They carefully identify the different types of rationing- by denial, selection, deterrence deflection and perhaps most insidiously of all by dilution. Rationing by dilution refers to a situation where a service may continue to be offered, but its quality declines as cuts are made to staff numbers, equipment and so on. This form of rationing may be the least visible, but it may also be the most pervasive.

How should priorities be set? Who should be making the decisions about which patients should be treated and how? Can we reconcile a utilitarian approach to maximise the benefit for the whole population with the needs of the individual? Will the rights of the individual as laid out in the NHS Constitution provides sufficient safe guards? How much do we know about “bed side rationing”- the effects of decisions by clinicians determining who gets what? This well-written and thoughtful paper argues that geography should not determine the care people get as it currently does.

Debates about priorities and rationing place great emphasis on accountability, but exactly who should call commissioners and providers to account is less clear. The courts, clearly have a role. However, they cannot routinely scrutinize decisions, far less outcomes. In the future system there could be an important role for Health Watch, especially if it is linked to the Care Quality Commission and the analytical ability of local agencies is strengthen. The challenge, for both health watch and local authority scrutiny committees, will be to sound the alarm when efficiency saving become a euphemism for rationing by dilution. I would recommend reading Thinking about Rationing – it provides insights and a vocabulary that will be of use in the months ahead.

Official Opening of the Edgware Renal Centre

Patients with kidney conditions in north London are benefiting from a new facility which has brought treatment closer to their homes.
The Royal Free has invested £3million in a brand new kidney care centre at Edgware Community Hospital which opened at the end of last year. The centre was officially opened on Monday, 26 March, by the mayor of Barnet, Councillor Lisa Rutter. Guests at the event included Matthew Offord, MP for Hendon, and Dr Donal O’Donoghue, the national clinical director for kidney care.
The centre has 29 dialysis stations and five clinic rooms offering a full range of renal services. This includes haemodialysis and peritoneal dialysis, preparing patients for dialysis and the treatment of chronic kidney disease. The Edgware centre has a self care area, which allows patients to dialyse themselves with minimal staff supervision or prepare for dialysis in their own homes.
The new centre is more convenient for many patients, who previously had to travel from the Edgware area to other dialysis centres across north central London. Care is delivered by the same high quality team of Royal Free staff, saving patients time and making treatment more convenient.
Dr Jenny Cross, dialysis lead clinician at the kidney care centre, said: “We know that if you are travelling several times a week for dialysis, having a shorter journey time is really important. We have listened to the needs of our patients, and we wanted to provide them with a modern, purpose-built facility closer to their homes.
“The opening of Edgware is part of a wider strategy transforming the way we deliver renal services. We want to give our patients more choice about where they have treatment, to offer a range of treatment options in comfortable surroundings and to be able to treat patients in one place without them having to travel to different locations.
“We have begun to offer a more integrated pathway of care for patients with chronic kidney disease in the area, which will deliver diagnostic clinics with a detailed care plan provided for GPs at the new centre.”
Karen Nathan from Bushey has dialysis for three and a half hours, three times a week, at the new Edgware centre. She said: “I used to have to travel to Camden for dialysis but this new centre means I can receive treatment just 10 minutes away from my house. I have to come here three times a week so it’s important to be able to come to facilities that are closer to my house.
“All the staff, including doctors, nurses, healthcare assistants and domestic staff, are helpful and provide an excellent standard of care. We are very fortunate to have this excellent facility.”
Adrian Levy, from Woodside Park, comes to the new centre for regular tests to check on his kidney function. He said: “The facilities at the new centre are like a five-star hotel. All of the staff, from the nurses to the cleaners, are very polite and helpful.
”When you have caring staff around you, it makes you feel so much better as a patient. The new centre is much closer to where I live and it is easier to park here. I feel completely relaxed and special whenever I come here.”
Following the opening of the new centre, the Royal Free will offer a full range of kidney services on one site. By working more closely with local GPs, the aim is to provide a seamless service between GP practices and hospital specialists.
The Edgware centre is the first of three new kidney centres planned over the next 18 months. The Royal Free is preparing to expand the existing Mary Rankin unit at St Pancras and there is also a brand new kidney centre in Tottenham planned.