All Party Parliamentary Kidney GroupMinutes of the All Party Parliamentary Kidney Group Dialysis Manifesto Launch held on Wednesday 29 October 2008 at 2pm - Room 5 Westminster
Apologieswere received from: David Gauke MP, Andrew Mitchell MP, Linda Pickering Secretary Lincs KPA and Bob Price Six Counties KPA.
Dr Evan Harris MP welcomed everyone to the meeting, introducing MPs present, Tim Statham CEO NKF, Ray Mackey Chair NKF, Marion Higgins Vice Chair NKF and Donal O’Donoghue Renal Tsar as main speaker at the event. He stated most of the work had been done by others and he would be asking Donal O’Donoghue to speak and respond to questions raised. He invited NKF representatives, MPs and others to make comments and ask questions which would be addressed.
Addressing the meeting he explained dialysis is an essential replacement therapy for kidney failure. If patients suffering kidney failure did not receive this treatment they would die. Dialysis is not a maintenance treatment, but a life saving treatment. Many patients live with Chronic Renal Failure (CRF) a life long illness, until another form of treatment transplant, is received. This is a crucial part of treatment for kidney disease. Renal has been a Cinderella subject for a long time. Transplantation is not a cure but another treatment. Dialysis involves machines, surgery and lots of questions about fluid balance, but without dialysis, patients would not exist. Dialysis is simply not as high on the political agenda as it needs to be.
The National Kidney Federation (NKF) leading medical care organisations and associated specialists, involved in renal failure, heart, vascular access and diabetes had gathered for the dialysis summit. More and more people are now kept alive by the treatment of dialysis, but there is a real danger need will outstrip supply. The Manifesto shows how currently it is not met, and how clinical and other issues are not reached.
Emerging from the background of both the Summit and Dialysis Manifesto is a call to action to build on the Transplant Manifesto launched previously and hopefully the government will accept and identify the needs in this area, and cooperate and push the monitors against the ten points of the Manifesto.
Donal O’Donoghue thanked Evan Harris for the introduction. He welcomed the opportunity to accept the Manifesto which highlights issues around kidney patients, who are far better placed to tell the stories and describe what its like to be on dialysis.
Historically there was no replacement therapy. Dialysis is a relatively new therapy which was buried in far corners of the hospital. That has all changed under the rebuild programme. In Birmingham for instance the transplant audit has shown a serious problem and the University Hospital Birmingham has dialysis in portacabins. A new unit will be available from 2010 with state of the art facilities.
The first dialysis care was developed in Holland during the war, but dialysis did not become a treatment until the 1960s. The focus has been on transplantation and dialysis seen as a treatment as you approach transplantation. But we now know many people will only ever receive dialysis. Over the last 25 years dramatic changes have been seen in relation to the average age of a patient needing dialysis. Improvements have seen the average age move from 40 - 45 to 60s. Advances in medication and the discovery of EPO have seen advancement in the management of kidney diseases. Renal failure is known to be increasing. More than 10% of the population will require transplantation and dialysis (NSF 2004). Growth of 6-8% per annum will continue at this rate so the issue will remain with us. Good data of people on dialysis is needed. The numbers are increasing, but paradoxically choice seems to be decreasing. A reduction in home based therapy has been seen and we need to encourage the kidney community to develop this type of therapy.
Dialysis cannot be separated from transplantation you need to talk about both and take advice from people with kidney diseases and advancing kidney diseases. It is critical to provide choice before embarking on treatment. With informed choices your outcome is considerably better. If vascular access was improved this would improve morbidity increasing an ageing population heading towards kidney disease. Conservative management will for some people be as effective as being on dialysis. They may live longer and if not would have had a better quality of life.
The focus has to be on the experience people have on dialysis. Dialysis is a risky business. Someone 25 years old can present with the same cardiac problems as 75 year old in general public. Hospital infections such as MSRA and line usage, contribute to the risks. If we get the pathway right this should reduce the problems. Transport is an issue and data is now being collected. Good clinical indicators are needed then move these to the public who use the services. Drive quality forward. Patient quality is most important of all. Looking at the parameters for kidney patients, there is no other area where the outcome is more important than dialysis.
Evan Harris thanked Donal O’Donoghue for his presentation. He thanked Roche and Baxter for their support on printing costs and asked for the APPKG and NKF’s grateful thanks to be recorded. Members would be invited to ask questions shortly, but firstly asked Marion Higgins – NKF Vice Chair, to share her experience of dialysis with the meeting.
I have been asked to give you a patent’s view of my dialysis experience and the Manifesto.
I have been on dialysis now for 9 years and have been fortunate enough to progress to home haemodialysis, which I do with the help of my husband. It has been a long journey and I feel that I am lucky to be here to tell you of my experience.
Being told that you have renal failure and that you need dialysis to keep you alive is a most terrifying experience. When it happened to me I felt as if the bottom had dropped out of my world – I wondered if I would live to see my grandchildren start school, let alone watch them grow up.
Renal failure is not just about dialysis – it brings with it a whole range of dietary limitations and fluid restrictions. It also involves a complete change in lifestyle, which affects the entire family.
I wasn’t given much information about dialysis but was informed that I would be a “good candidate” for peritoneal dialysis, a form of treatment that involves putting a special dialysis fluid into the tummy where it dwells and dialyses and is removed again about 5 hours later. This process had to be repeated 4 times daily. I was just grateful that this was a home-based treatment.
For a few months I was very ill, and could not work at all. Simple tasks like showering and dressing were just too much for me to cope with, let alone the household tasks. I am lucky enough to have a supportive husband and family – but I still felt incredibly alone and shocked.
Eventually the dialysis treatment started to work, and I became more human again and a few months later I returned to work — It was a struggle, but thankfully I had very understanding employers who supported me all through the difficult times. Sadly after 9 months the treatment failed to be effective, after many visits and stays in hospital I had to go on to haemodialysis. For this treatment I had to travel 40 miles to Oxford after work — arriving home at 1 in the morning — which was very tiring to say the least. This was for about 8 months until a space was found for me locally. But then, 4 years later I discovered from another patient, that I could have this treatment at home. Why I wasn’t I advised of this at the outset? I don’t know! But this is why the manifesto recommends that patients should be given more information and choice concerning treatment.
Throughout the years I have become involved with our local kidney patients association and latterly the NKF. I have developed a greater understanding of kidney disease and can now share my experiences and knowledge with those newly diagnosed with renal failure.
This is a silent disease, which affects young and old alike. Imagine being a young child whose whole life is taken up with trips to hospital three times each week for treatment; imagine being a young man or woman having to have dialysis but still having to support a family, or imagine being elderly – going to and from the hospital but with no-one at home to support you. These are just a few examples.
The treatment keeps us alive, and in some areas the process is better than others. I was delighted therefore to have the opportunity to attend the dialysis summit and even more happy to be here today for the launch of the dialysis manifesto.
There are ten action points highlighted in this document, which are vitally important to the well being of every renal patient in this country. Renal services have made so much progress over the past few years but there is still much room for improvement.
The number of people requiring dialysis is growing each year, and I know from personal experience how stretched the dialysis units are. We need more units closer to home so that patients don’t have to travel these long distances to receive their treatment.
We also need units that can accommodate patients who need to travel because of work, or to visit family and friends, and of course to take a holiday. In the UK at the moment it is extremely difficult to get dialysis away from home because of lack of capacity – it is actually much easier for us to get treatment in Europe.
We must also ensure that patients receive vascular access surgery early – those that don’t will suffer and are at greater risk of complications and infection.
Patients must be able to choose their mode of dialysis or indeed, if they wish to dialyse at all. This should all be discussed and planned together with the patient early on.
Dialysis services need to be maintained as specialised services. We are not patients who can be treated, cured and then sent home. The treatment we require – we will need for the rest of our lives. Even if we are lucky enough to receive a transplant, it is probable that at some time we will require further dialysis if the organ fails.
Let me just emphasise — Renal failure will not go away — patients must be treated with the best that can be offered, and this manifesto has brought together some key points for action. On behalf of all renal patients in this country I sincerely hope that these recommendations will be considered and taken on board by this government.
Evan Harris thanked Marion Higgins for the eloquent experience of her journey and asked for questions and comments.
Janet Dean MP – Do we know the current figure of the number of dialysis stations, and how many we need to increase by throughout the country?
Donal O’Donoghue – Difficulty in how you configure the services. There are reasonably good figures on people using dialysis can be achieved by using detailed modelling work with the SHA but the work has not yet been done and there is variation throughout the country. It is difficult looking at the machines. Home Haemodialysis (HHD) done five or six times per week is more effective than the normal. We would prefer to know the numbers of the people and how far they are travelling for treatment.
Evan Harris MP – It is difficult to measure the number of people coming on to dialysis and those that are not accepted on to dialysis, quite in depth work. Not accepting because of empty slots, which are automatically filled when someone leaves. Prefer it is a need if it has capacity.
Janet Dean MP – What is good practice and where do you find it?
Evan Harris MP – Good practice is offering choice before a patient requires renal therapy, a year before transplant and before dialysis if possible. End Stage Renal Failure (ESRF) patients should have a choice of conservative management and dialysis regimes should be tailored to achieve the best outcome for people. The only way to measure this is by asking them. There are some practices that work. Big variation in home dialysis offered which may not expand due to demographics. 1% of all HHD increased for the first time last year. Many doctors would choose a home therapy above hospital treatment. I would like to see home therapies offered.
Linda Gilroy MP – In terms of home therapy, has anyone got it right that could be used as a model for others?
Donal O’Donoghue – Two or three are taking a very proactive approach. Choices need to be made on the type of treatment, and this should be moved to education, workshops support groups etc, learn and spread the word.
Richard Benyon MP – Offer choice and make this informed. Clinicians have all the options available. Help clinicians to be able to offer different types of dialysis that allows patients to make the choice.
Marion Higgins – It has improved in the last few years in the area I am in but it is not the same throughout the country.
Donal O’Donghue – Really difficult to know the answer to some questions. There are problems in capacity for home therapies for children. In terms of dialysis for adults, in terms of access to Peritoneal Dialysis (PD) and home therapies, there is not really any reason why the knowledge base is not there. Choice not always there, we should encourage families to tell their stories. Team lorry sponsored BRS, NKF fantastic ways of information for the public. There is a way to go before we are really offering choice. We do not know about the experience side and we have to ask people how we can do it better. There are areas in medicine where you can get reliable measures.
Douglas Naysmith MP – What is the comparative cost of maintenance of home and satellite unit?
Donal O’Donogue – It is considerably cheaper to have home therapies.
Douglas Naysmith MP – How high a cost is maintenance for a satellite unit?
Donal O’Donoghue – There are currently 250 satellites.
Douglas Naysmith MP – Are they all run by Baxter?
Donal O’Donoghue – There are 30 units where the business is a commercial company. The service is delivered by NHS physicians and occasionally nursing staff. 70% is under the NHS and delivered by the NHS.
Douglas Naysmith MP – Is it true satellites are not capable of unblocking lines?
Donal O’Donoghue – that would depend upon the experience of the medical cover for staff, but unblocking lines would seem to be a straight-forward procedure. 260 places 54 home units 210 satellite units.
Evan Harris MP – Is it possible to measure the satellite units that can unblock a line and generally have the staff to do so. I have unblocked lines myself but nurses are always better. There is an argument to say that it should be nurses, who do this. Then fund our nurses, train and recognize them for doing so.
Donal O’Donoghue – Nurses on the dialysis unit do a fantastic job and deliver far better than doctors. There is a backward facility in some satellite units, but not in the main kidney units.
Janet Dean MP – Do we have the relative costs of the commercial units compared to the NHS?
Donal O’Donoghue – Not sure ISTC schemes are running yet. Prior to that time over 15 year’s healthy relationship that was due to the determination of the doctors and the commercials. Not being in partnership sometimes valid. Better development of units in the right locations with the right clinical commercial and right commercial sub-contractor, rather than providing direct to the NHS. Slightly different to an ISTC. Really work closely together subject to commercial confidentiality agreements.
Evan Harris MP – is there NHS capital funding available to expand capacity?
Donal O’Donoghue – There is capital available not particularly for dialysis expansion. There was a drench of capital which increased satellite expansion that ended 2006.
Linda Gilroy MP – What if you are not a foundation trust but need more capacity and so limited to find a commercial partnership?
Donal O’Donoghue – It depends on where you want to put a facility. It would be incorrect to say that it is always limited.
Timothy Statham – NKF supports the concept of choice as first thing for patients but also to ensure the 20,000 dialysis patients are treated wherever placed in the country. Afro Caribbean and ethnic patients are being told units are full and people turned away. There are cases where our patients are expected to dialyse through the night (twilight shifts). On top of the condition you have you should not be asked to do it. Access surgery – when you come on dialysis you have to have a fistula or tube in your stomach before you can dialyse if not you do very badly. Figures show 50% dialysis patients die in the first five years but we suspect that 50% die in the first year because the access surgery was not done in a timely way. Panic and rush before dialysis certainly tipped to failure.
Evan Harris MP – Manifesto requirement number five adequate pre dialysis – the Prime Minister has to be asked.
Alison Seabech MP – Plymouth / Davenport. People now live much longer. There are many black and ethnic people amongst our population and more people with cancer who need chemotherapy. Many people in Plymouth now have serious kidney function problems as well as cancer. It is extremely difficult to get medical experts together to get both issues on the agenda. Is there capacity issues in terms of the medical expertise needed to deal with this sort of complex issue? Could our knowledge base be built up from patients, take figures from them? We are not providing choice of treatment.
Helen Rambaut – I received a living donation from my mother. The experience of the transplant affected my whole family. I believe that it is important to offer all the different treatments, but it is also important to consider the quality of life the different treatments have. It is a debilitating disease that sometimes means you are unable to work. How do we make a difference and see an improved outcome and how do we know we get an improved outcome?
Donal O’Donoghue – There are a number of issues to answer here.
Evan Harris MP – Cancer would come down to the specifics of the disease.
Helen Rambaut – Feel your response is hard. Kidney patients want to work but cannot. You may try to claim disability living allowance (DLA) but this is also hard to achieve. It is a mish-mash.
Evan Harris MP – NKF does excellent work in this area and will get back to you. It is a recognized problem. The RNIB has carried out an initiative in relation to the new ESA system.
Helen Rambaut – Reiterated it is quality of life that really matters.
Marion Higgins – NKF Vice Chair I am tremendously lucky, so many have other people have comorbidity issues it is very much an uphill struggle.
Timothy Statham NKF CEO – The 6½% per year has to stay at this level just to stay still.
Evan Harris MP – Capacity is not sufficient to meet current needs let alone future requirements. This is not acceptable, there has to be new capacity to meet increased need. Are you confident there is a process through commissioning to access the capital to build more new units? Is it not reasonable to say a unit is full even if it has one day time slot free. If a unit is on 100% there is no choice.
Donal O’Donoghue –Variability throughout the group of SHA areas. It is not a one size fits all graph. We need to provide to meet the demand receiving the modelling of the expected numbers of people on dialysis and provide it to SHA level — it may need its own modelling projections. Assess historical information which is well known for the East of England and create a comprehensive plan of where to increase.
If spaces are found in a unit it is not a robust measure of provision. I think it is important we have information on quality care, timed fistula in place, transplantation and make the public aware. We should be expecting our specialized commissioners to be working with PCT commissioners to achieve robust public plans which can be sustained with the projections made from the local community. Each community – more dialysis capacity. Look at the figures year on year and get that right. There are places in the county where it is right. South Yorkshire, West Midlands it is working for them. A balanced portfolio means they do not the have the same issues as other parts of the country.
Evan Harris MP – Have the Prime Minister accept these reasons and ask for cooperation. Work out progress against them, and have collected data from the DH and measure the prominence. Many of those apply to commercial capacity, vascular as well as heart. Are people having to back-pedal or delay? Many of those things are about commissioning and we need to engage with them and ask how they are applied to services like these. We need to be able to account.
(Contributor) Commendable work of the report in terms of channelling demands. Increase dramatically in the years ahead. Looking at requirement of how many patients based upon as well as what is needed. Journey may be a unit dialysis. We need to take account of the new technologies becoming available, perhaps enabling more than 20% HHD. Planning the need going forward and not immediately rush in. Take a step back and look at the number as a whole requiring dialysis and the services so we can have choice.
Evan Harris MP – If hospital unit, it follows there is no choice.
Donal O’Donoghue – We need to ensure that quality of life on dialysis and experience is absolutely good. Historically we have not been good at measuring this. We are thankful to the Renal Association (RA) and patient organisations to have this data available. Vascular access will have good metrics for each kidney unit and will be made available to everyone to drive things forward.
Evan Harris MP – Thanked everyone who had been involved in the long term, NKF, Roche and Baxter. The Speakers from the NKF and to Donal for answering question and being put on the spot.
The meeting closed at 3.20pm.