Thursday, 21 April 2011

National Kidney Care Vascular Access Report

Nearly 2 in 3 kidney patients commence haemodialysis using a venous catheter, failing to meet Renal Association and Vascular Society guidelines.

The second National Vascular Access Report was published on 30 March 2011. We have been awaiting the results for some time but there certainly shouldn’t be any complacency about the findings! It makes uneasy reading.

Quality means different things to different people. What does this mean for people with kidney disease? Well for those with advanced chronic kidney disease it means good preparation and choice. For that the individual needs to be well informed, their views, values and aspirations need to shape the decisions. Patient choice is central to high quality care. Good outcomes need involved patients and well organised services as well as time for discussions to enable shared decision making. Decisions about dialysis must involve discussion about all options for dialysis, transplantation and conservative kidney care. Not everyone is suitable for transplantation but when people aren’t or the risks are high, that needs to be explained and discussed with the patient. The reasons should be clearly written in the patient’s record. Similarly, the conservative kidney care or “no dialysis option” needs to be available to everyone and a significant minority now choose this option.

When dialysis is chosen a whole range of other questions arise. Home or hospital? Peritoneal or haemodialysis? When the patient’s choice is haemodialysis, planning needs to begin and this includes type of access as well as regime and location of treatment. The simple most important modifiable variable for those starting haemodialysis is successful creation of arteriovenous fistula. A good fistula can literally mean the difference between life and death, can be crucial for home
haemodialysis and should ensure a smooth start to dialysis as an outpatient.

So for most people choosing haemodialysis the safe, timely and efficient creation of an effective Arteriovenous fistula is a key quality indicator. For those who start dialysis as an emergency we need accelerated procedures to ensure equity of counselling and support so they have the options
and choice including type of access when haemodialysis is preferred.

Few people are totally unconcerned about needling, some are quite apprehensive and some have needle phobia. Peer support from other patients, encouragement from skilled staff and occasionally psychological therapies can help reduce this normal apprehension. Patient choice is very rarely
a reason to provide dialysis through a central line. But there can be technical reasons why a fistula or even a graft is not possible. For people who need dialysis through a line a zero tolerance approach to infection is a must. MRSA and other blood stream infections in haemodialysis patients have fallen
dramatically over the last few years. We need to remain vigilant about infection. Patients in whom successful fistula formation will not be achieved should not be subjected to futile operations. This requires clinical judgement and leadership. The reasons why fistula formation is not possible
should be clearly explained to the patient and exception reported in the notes.

This audit has only been possible because of the hard work of the central team, the leadership of Dr Richard Fluck, the support of the Renal Registry and the importance individual clinical units place on vascular access as a marker of high quality care. It shows significant variance – that should cause
local teams to pause and consider how they can do better. Resources are limited, they need to be used well, and in some units they may need augmenting. Ambition should not be limited.

I see this audit as a start, in time we will need to collect different things. The introduction of best practice tariff for dialysis via a fistula will, I hope, provide a stimulus for earlier creation of vascular access. We know that experience and outcomes are dependent on team working, unit culture and individual behaviours. The importance of preparation and choice was articulated in the National Service Framework, it is here to stay, and during these difficult times for the NHS ensuring that we offer patients the full range of options and support them in making good choices is key to improving outcomes.

Vascular access is important in its own right but it is also a measure of preparation, patient engagement and can also be the driver for improvement in choice of renal replacement therapy or conservative kidney care.

Wednesday, 20 April 2011

Networks endorsed

Like many in the kidney community, and indeed the other clinical communities that have developed managed clinical networks over the last decade or so, I was pleased to read Sir David Nicholson’s, Chief Executive of the NHS and Chief Executive designate of the NHS Commissioning Board, latest letter on managing the transition in which he endorses the role of clinical networks in driving up quality of care.

Sir David said “as part of the broader engagement work, I have asked Sir Bruce Keogh, the NHS Medical Director and the National Clinical Directors to begin longer term work to strengthen our multiprofessional clinical networks and to engage with the networks to understand how best to improve outcomes for patients. There is a central role for networks in the new system as the place where clinicians from different sectors come together to improve the quality of care across integrated pathways. So I want to put these networks at the heart of our efforts to renew and strengthen engagement”.

One of the key challenges now facing networks is to demonstrate their role in improving the integration and coordination of care. Seeing people in the right place, at the right time, by the right professionals with the right information – for both patients and healthcare practitioners, remains as important as ever. Where the provision or commissioning of services is fractured there are considerable risks to patient safety, inefficiency in resource utilisation and too often a dip in quality.

By bringing all the interested parties including patients, to the table networks can facilitate the ways of working needed to deliver coordinated care, measure quality across boundaries of care and potentially support choice and competition.

These days the journals, health service magazines and even the general media are full of claim and counter claim about the “NHS reforms”. The “natural pause” announced by the Secretary of State does allow time to listen, reflect and improve the recommendations in the health and social care bill. Kidney care organisations need to be involved in those debates. But it is possible to get deflected from the day job by all the change and uncertainty and forget that there are a lot of certainties facing the NHS – the financial situation, the aging population, the increasing demands of our public, the central role primary care has always played and will continue to play in our system and the fact that, although kidney disease is changing, it’s also increasing year on year.

If you could only read one thing about the NHS in these turbulent times I would recommend Sir David’s letters on transition “Equity and excellence : liberating the NHS – managing the transition”. They are the epitome of the writing tenets I was taught at school – accuracy, brevity and clarity. Sir David says in taking decisions this year you need only ask yourself 2 questions:

· Will it improve the care for your patients?
· Will it improve value for taxpayers?

If the answer to both is “yes” then it’s the right thing to do.

Thursday, 7 April 2011

Kidney care with no dialysis unit?

Well that might be an aspiration – to get so good at early identification and management of kidney disease that people didn’t need dialysis any more. We are a long way off that but if we do achieve the goals of the organ donor task force and the current levelling off in the number of new patients requiring dialysis, seen over the last few years continues, we might not need to keep expanding the number of dialysis units and the total number of people on dialysis may even start to decrease beyond 2015.

So early detection, better chronic disease management, earlier and more transplantation: dare I say “care planning” is the way to go.

But a kidney service with no dialysis unit? A bit premature you might think. A pub with no beer. Well no. As part of the Royal Free Hospital plans for people to be managed as close to home as possible and to optimise care, the main hospital chronic dialysis facility has closed down and unit-based haemodialysis is now provided by a network of local community and hospital based facilities. The main Royal Free site doing what it can only do – management of complex acute kidney injury, inpatient care and transplantation: providing a team, infrastructure and co-ordinating care; training, education and research.

In fact, you would find a very similar model in many countries with the university hospitals providing research and training, a consult service but often with only a small on-sight haemodialysis unit. At the Royal Free the demand isn’t directly around the hospital, it’s in the adjacent neighbourhoods and so John Connelly, Clinical Director and Dave Thomas, kidney services manager, developed a win-win case for moving dialysis closer to peoples’ homes and freeing up valuable, and expensive to run teaching hospital space.

The move to more local provision has also reduced the institutionalising effect dialysis can have on patients such that many more people are now involved in increasing degrees of self care. I am sure that is also a result of Katy Gerrard’s efforts to implement care planning for those with advanced kidney disease. The Royal Free “my kidney care plan” has proved to be very popular with both patients and staff. Katy told me that overall most patients found it useful and reported that it has improved their care. Initial results are promising and are to be presented at the forthcoming Renal Association/British Renal Society meeting.

LINK: Care planning - mini topic review 1 April 2011

Tuesday, 5 April 2011

Q & A: Will my transplant centre close?

Q: I am worried about the possible closure of selected UK transplant centres so that we have only a limited number of specialised centres, and the impact this will have on travelling times for living donors and all recipients. Do you think that this may end up having a negative effect on transplantation in general? My Transplant centre is Newcastle, which covers an area from the west coast of Cumbria across to the east coast and down as far as Hull. If this plan is put into action, which centres are being considered for specialised status and how will this impact upon my local Transplant centre's patients?

A: Thank you for your question. First of all, let me reassure you; I am not aware of any plans to close any UK transplant centres. The number of kidney transplants being carried out is increasing.

Data from NHS Blood and Transplant show that the annual number of kidney transplants undertaken in England grew by 25% between 2007 and 2010. We want to increase the number of kidney transplants taking place even more, so there should be no reason for any transplant centres to close. The only reason why a transplant centre might conceivably close would be if there were safety concerns – not an issue I am aware of at any of our current centres.

We have a UK Donation Taskforce plan which aims to increase kidney transplants from deceased donors by 50% over five years. That means increasing the number of people receiving a deceased donor kidney from 1450 in 2007/8 to over 2150 by 2012/13. Although it is a complex and serious operation, wherever possible a kidney transplant is the best treatment for someone with kidney failure. Quite simply it means freedom from dialysis and all the health and lifestyle limitations that dialysis entails. While we all work very hard to reduce the risks of infection for dialysis patients, it is still an unavoidable risk. A replacement kidney is a better, safer, more cost effective way for the NHS to treat people with renal failure.

Transplant rejection, greatly feared in the past, is still an issue but modern drugs have reduced the risk considerably. Patients still have to take drugs throughout their lives, but this is a much better prospect than lifetime dialysis. However, as many of us are all too aware, still too few transplants are happening.

The main challenge is that there are far more people waiting for a kidney transplant than there are donor organs available. The shortage of organs for transplantation is not unique to this country but we lag behind some other countries in the number of citizens donating organs and tissue. The problem is exacerbated because the numbers on the waiting list far exceed those being operated on each year, so every year we need to catch up with ourselves, before we can even begin to make inroads into reducing the waiting list. Black and minority ethnic groups are in double jeopardy because they have more need of organs but a reduced pool of donors.

We have a taskforce in place across the NHS to try to make donation the norm rather than the exception. We are working to make sure that all NHS staff are aware of the urgent importance of transplantation and to encourage donors to be identified. Virtually every acute hospital trust in the NHS now has a donation committee, reporting directly to the board on the hospital’s donor rates. They are responsible for closing the significant and unacceptable gap between the numbers of potential organs that could be donated each day in our hospitals with the number that actually are.

I am very aware that this is a difficult area, summarised very well in the previous Chief Medical Officer, Sir Liam Donaldson’s 2006 annual report in the chapter titled ‘The Waiting Game’. It is a highly emotive issue, combining matters of life and death with the law at what is an emotional time for the families of potential donors. So it is understandable why healthcare professionals have sometimes been reluctant to raise the subject of transplantation. However, with surveys showing that while 70% of people want to donate their organs after death only 27% are on the NHS organ donor register, healthcare staff have a responsibility to explore this possibility. For example, on intensive care units, every legitimate opportunity should be taken to retrieve organs from heart-beating donors, after brain stem death has been confirmed.

We are also doing more to promote the organ donor register. A further million people signed up during 2009/10 taking the total to nearly 17.5 million who have pledged to help others after their death. However, this is still nowhere near enough. Estimates suggest that the number on the register would need to double if we are to find organs for all those who need them. It is important that people on the organ donor register make sure that their relatives know their wishes so they can be put into effect swiftly if the need arises.

Of course, unlike other kinds of transplant, kidney transplants can also come from living donors. Living donors now make up around one third of all kidney transplants. This requires greater surgical expertise and co-ordination, with two “patients” involved rather than one, but now that all transplant centres offer this possibility we will see the numbers of transplants continue to increase. The paired donation scheme is now also up and running whereby a potential live donor for a recipient, let’s say their spouse in Newcastle, can if the match is not good enough donate to another kidney patient at the other end of the country in a similar position, in return for their live donor giving a kidney to the Newcastle patient. We are also seeing transplant centres becoming more sophisticated in other ways. For example, every centre is now offering minimally-invasive laparoscopic surgery (also known as keyhole surgery) for live kidney donation operations. Recovery times with this kind of advanced surgery are much quicker, with a lower risk of complications or infections, and patients are back on their feet much sooner. Some units are now also carrying out highly specialised blood group or ABO incompatible transplants. Previously, transplant recipients could only receive organs from a donor with the same blood type as them. This has made it harder to find suitable donors for some patients, particularly those with less common blood types. However, new techniques are making these transplants possible by suppressing aspects of the recipient’s immune system through drugs and treatments that reduce the risk of the donor organ being rejected. Similar techniques can be used for highly sensitised patients. All these new treatment options mean that patients are able to exercise far greater choice about treatment and care. For me this is crucial. For NHS patients there should be ‘no decision about me without me’ and it is vital that the NHS gives patients as much say and control about their treatment and care as possible. For kidney patients, this means that they should be offered choice about how they want to manage their kidney disease at every stage. Patients have a right to choose to be transplant listed as when they are within 6 months of needing dialysis, ideally so that they can have a transplant before they start dialysis if they wish. There is still far too much variation across the country in how long it takes people to exercise their choice to go for transplantation and then to be added to the transplant list.

The latest published data we have, albeit from 2005 shows that on average it was taking 2 years from starting dialysis to be transplant listed – I am expecting to see considerable improvement as this is an unacceptable delay. A change to the NHS 'payment by results' funding system to support more multiprofessional clinics for preparation is helping to ensure that patients get to exercise this choice sooner by introducing financial incentives for kidney units to ensure that patients get transplant listed at the right time for them. This is, I have to say, almost always earlier than currently happens. Patients can also help the NHS up its game here by asking to have these discussions as early as possible.

Therefore, going back to your original question, I see absolutely no reason why any transplant units should close unless there were any concerns about safety. Transplantation, where possible, is the best treatment for renal failure. With all the work going on to increase transplant rates, it is estimated that - if we do as well as we can - by 2018 we can expect to have turned around the steady rise in the number of people on dialysis because more people will have had transplants. As medical science continues to develop, there will be even more options for transplant than there are now. Currently, US surgeon Anthony Atala is experimenting with a ‘3D printer’ that uses living cells to create a transplantable kidney (see Print a Kidney if you don’t believe me!). Printable kidneys may be a long way off, but as we look forward, we can be certain that if we keep up the focus on transplantation and patient choice we will see more and more people receiving life-saving and life-changing kidney transplants and a continuing need for our vital network of transplant centres.

Published in Kidney Life, Spring 2011