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Modernising renal services - (full conference transcript)

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Jane Verity

It's been a pleasure to be invited here to join you in Blackpool. It is refreshing to see so many kidney patients and carers here under one roof. A clear sign that the NKF and the Kidney Patient Associations are active, and making the sharing of knowledge and patient experience an integral part of your work. The original title of my talk was somewhat different. It was 'The Renal NSF - How Will It Work?'. Whilst you will need to wait until the NSF is published to make your own judgement of that, my answer is that we certainly propose that it should. We have received very helpful advice and information during its development from users about how the service feel it might work. One way is to take advantage of the opportunities that are available to us through the wider policies that the DOH has for NHS users. Our plan is to focus today on these opportunities.

The opportunities for renal services are to give emphasis to patient focus, increased capacity, better access, and wider choice. There are also multidisciplinary working between doctors and other health care professionals, a greater collaboration across primary, and secondary care, and the development role of educational and learning processes. We are in this period of rapid change which is relatively disturbing to NHS staff, patients and users, and I have to admit people like myself at the DOH are not immune either. I do think it is healthy to examine our assumptions about our work, whatever our role in healthcare provision, and see how those changes can be transferred into benefits for patients.

When John Reid took over the mantle of Secretary of State for Health he confirmed that there would be no letting up in the direction of reforms that the predecessor, Alan Milburn had begun through the NHS plan. I sense a feeling today that NHS managers and staff feel that the NHS plan is making practical improvements to patient care, and to the patient experience. What of course is important is that you as patients also feel that things are getting better. When John Reid spoke a few weeks ago, he described amongst other things four basic principles:

• Patient healthcare would be provided equally to those that need it, free at the point of need.
• The NHS will become a more personal service focusing on the needs of patients, not providers.
• Capacity will be increased alongside an extension of personal choice for patients.
• The relief of pain and distress will remain the cornerstone of NHS values.

I don't think anyone today would argue with these key goals. The actions and the benchmark of success will be reflected in the well-being and comfort of patients, and a more personal health service. This is something that is often difficult to measure. So how does the Renal NSF get around this? Well, NSF's are now part of the landscape for ensuring that there is a focus on the care of people living with a range of chronic conditions. They aim to reduce inequalities, ensuring that services are accessible to everyone, irrespective of their age, gender, race or culture. From cancer to coronary heart disease, through mental health, to diabetes, renal services, and long-term conditions, the NSF programme ensures that long term conditions are on the agenda. The Diabetes NSF has already been published, and the renal and long-term conditions NSF are to follow. A NSF sets the standards for improvements and modernisation in health and social care settings, and they put in place programmes to implement and to performance measure local and national progress, so NSF's are not just free standing documents, they are key drivers for change, and they are the key drivers for the Government modernisation strategy. They are backed up by underpinning programmes. For example the Diabetes NSF is supported by £27 million for the purchase of specialised digital cameras for screening, as well as a series of NICE guidelines on such matters as the management of blood glucose control, hypertension and patient education.

So the Renal NSF has not yet been published, but there are opportunities to get the supporting programmes up and running in anticipation. NICE (National Institute for Clinical Excellence), has already published an appraisal of home haemodialysis. It will give suitable patients greater choice if they decide they want to dialyse at home. Currently NICE are looking closely at the best practice in immunosuppressive regimes, to optimise the results of transplantation. My team at the DOH is also pressing NICE to put on their agenda the management of anaemia for kidney patients. If that happens we can look forward to advice that will end postcode variations in the prescribing of drugs for the treatment of anaemia, at different stages of kidney disease, from pre dialysis, through to end of life. There is money in the system, underpinning the development of the NSF. - £32 million capital funding, secured for three years starting in 2003/04, to continue to build up dialysis capacity. This brings the total investment for renal expansion to £60 million since the NHS plan was introduced in 2000. So far that money has delivered some 400 extra haemodialysis stations, and the 450 extra stations pledged in the NHS plan by 2004 will be delivered on time. If you are from the Blackpool area, then you will know about the new units that have opened in Chorley and Bolton. Previously patients had to travel to Manchester or Preston. Of course Blackpool soon is to get its own enlarged unit at the Clifton Hospital to take over the Devonshire Road service, giving more people access to a local service. As you know it takes time for this additional capacity to come on line, but the capital investment does support that and does increase access to services"

All NSF's take to the heart the Expert Patient principles. Key components of the Expert Patient are helping people to tap into their knowledge of their condition, and giving them the ability to make choices about how they live with their disease, and to help reduce the immediate and long-term complications. The Expert Patient Programme aims to provide patients with chronic diseases with evidence-based training to help them take control of their care, to enable them to explore the options of their condition, and the programme focuses on the fact that many people with chronic conditions often have a very good understanding of their condition.

It all sounds deceptively simple, putting patients first and giving them information and greater autonomy over their care. It does take effort, and a great deal of work is being carried out at a national level to help patients become better informed, and to promote the way that services should change. For many renal patients extending choice is not just about where they get their treatment, or choosing the doctor who provides it. It is also about having a say in the type of treatment they receive.

So what of the opportunities for renal services? I have already spoken about the extra investment going into renal services. We all know that more facilities are needed, indeed the NKF has been pressing for many years, really for as long as I can remember, for additional resources, and no doubt Gordon Nicholas and Tim Statham will continue to do so. The government has made it clear that extra resource should support choice. There is already a noticeable difference in the shift from peritoneal dialysis to haemodialysis. We have seen that in figures from the UK Renal Registry. In England and Wales, 68% of dialysis patients were on haemodialysis in 2001, compared to just over 50% 10 years ago. Those percentages need to be seen against a backdrop of an increasing pool of patients, so the actual number of haemodialysis patients has risen even more steeply. We can assume that more patients, where they are given the choice, are opting for haemodialysis over peritoneal dialysis. That's not to say that one is better than another, only that we can see a shift as more facilities come on line. That may or may not reflect different choices, but in the DOH there is a swing towards patient choice.

A consultation entitled 'Fair for All Personal to You', which is looking at extending choice, responsiveness and equity in the NHS and Social Care, was launched on the August 4, 2003, and the consultation period continues now until November 11, 2003. I suggest that you read the document; it can easily be downloaded from the DOH website. The main theme is to improve patient and user experience and build new partnerships between those who use health and social care and those who work in them.

So what could choice, responsiveness and equity mean? You will have your own views which the department would like to hear, but the starting point might be something around improved patient experience. The patients really are being treated as true partners in their care. A flexible responsive service might mean that you have dialysis at a time and place that is more suited to you, and fair access could mean equal opportunities to all clinically appropriate types of treatment. It is important to us to involve the public and patients, if we are to get things right. Ensuring that there is equity of access, that services are delivered effectively, and concerns are continually addressed. Patients of the 21st-century want to be true partners in their care, they want to be consulted, and directly involved in their treatment, and I think you demonstrated that today by being here. There is strong evidence that when patients are true partners in their care, it is a rewarding experience for both. For the patients and the clinicians, it's a win-win situation. Research shows that involving patients in choices leads to improvements in outcomes and greater satisfaction. So patients with chronic conditions are thinking improved choice will mean greater control over the treatment you receive. Your expertise in your own condition will make you a more powerful wielder of choice than the average elective patient. It could be claimed that it is not possible to provide choice because there is insufficient capacity, however that is a simplistic argument - choice is not necessarily about having more services overall, but about extending the range of services available. It is about the NHS becoming more flexible and doing things differently, not necessarily doing things more expensively. The consultation is likely to yield a range of ideas, some for early action, and others may be need to implemented over time, as capacity increases.

We have had a five-year settlement for the NHS; the consultation will help all in the NHS use those growing resourcess in ways that better reflect patient needs and preferences. We can ensure that everyone can obtain information and support that allows him or her to make choices about treatment that fits in with their own lifestyle. If the NHS cannot provide dialysis on a Monday, Wednesday, Friday morning, then they can plan for the patient to move to those slots when it becomes available. We can also ensure that those suitable are given the opportunity to consider a kidney transplant and can raise awareness to increase the number of kidneys available for transplantation. UK Transplant has recently decided with the Renal Association, the British Transplant Society, and patient representatives a common standard that all suitable patients should be eligible for the transplant list, if dialysis is predicted to start within six months.

It is important that we extend choice for patients across the NHS, but it will also be important to balance this with the constraints on the system. The Department will be testing any proposals against the criteria, is this really personal? Would giving people this choice be fair to everyone? Is there proof that it works? We need to be realistic about resources. We will need to consider whether proposals are a real priority issue for the use of resources and value for money? For Renal patients the choice may be about the timing of dialysis, it may also be about extending the choice of modalities, peritoneal dialysis, and haemodialysis, or maybe about where treatment takes place, home haemodialysis, or hospital based haemodialysis? The balance of constraints upon the system may be initially about capacity and availability. There is no conclusive evidence that any one treatment is better than another, and the choices will be based on what is best for the individual. Patient choice is now a major factor in the healthcare debate. This is the agenda that everybody in the conference can push forward by contributing to this consultation process, and in your everyday interaction with healthcare services. Some of today's challenges for renal services are becoming more and more prominent, the challenge of informing patients, and allowing choices of treatment, We will want the renal NSF to build upon the choices that already exist for patients.

Earlier I said I would say more about the NICE appraisal for home haemodialysis verses centre-based haemodialysis. The NICE Appraisal that people with established renal failure receive information so that the patients can make informed choices about their treatment as part of an assessment process. So they can make a choice between home and hospital haemodialysis, and a treatment that is best suited to their personal circumstances and lifestyles. That means that anybody who is clinically suitable for haemodialysis, whose home environment can be suitably adapted, and has the ability to care for themselves, has the choice as to whether they would prefer their care to be at home or in a unit. Going back to my earlier comment about balancing the constraints, these choices will be the decision to have treatment at home and the consequences on the carers and the family. These decisions obviously need to be carefully thought through and it needs to be done by a strong team with the patient, carers, and clinicians. So it is a team decision again partnership between the patients and the clinicians.

I do want to quickly mention the Transplant Framework for England. Saving Lives Valuing Donors (Click Here for more information and to download the Document from this website), which sets out the Government key aims for organ and tissue transplantation over the next 10 years. The Transplant Framework draws on good practice from national and international evidence, such as the widely acclaimed work in Spain. We believe the good practice of the Transplant Framework can significantly improve our transplant services. It gives examples of how we can encourage more people to donate organs and tissues, to increase the supply of viable organs and tissues for transplantation, by increasing public knowledge, and involvement. Currently 10.7 million people have joined the organ donor register, and the aim is to get that number up to 16 million people by 2010. UK Transplant now receives many calls each week to check that register from intensive care staff and transplant coordinators. Again we must ensure the services are patient centred. There are many dimensions to transplantation, but the most compelling and poignant is it is usually the death and the loss of one person which leads to the opportunity of life for another.

We need to continue the development of the transplant service, building on the quality and sensitivity of the transplant process, so that psychological needs of donors, donor families and recipients are met, and they each have the opportunity to have appropriate information and advice. We also need to ensure that staff in transplant units understands the psychological impact of the transplant process, and provide advice, information, counselling and support to living donors, relatives of donors, and people who receive a transplant. UK Transplant is funding 35 transplant donor liaison nurses, working with staff in critical care units to agree local procedures to identify possible donors. They are also funding 23 living donor co-ordinaters to work with families considering the possibility of donating a kidney. There is also funding to increase the number of organs from non-heart beating donors.

The number of people needing kidney transplants in the UK is greater than the number of organs available. This means that there has to be a system that patients are treated equally, and that donated organs are shared in a fair unbiased way. This is based on patient's need and the important need for achieving the closest possible match between the donor and recipient. The importance of match graft in survival is now been kept under review by the UK team. Rules for allocating organs are determined by the medical profession in consultation with other professionals, the DOH specialty advisory groups, and users of the service. I mention earlier that UK Transplant has approved new national policies for registering patients on the National Data Base.

I want to pay tribute to the many patients who have given up their time to feed into the advice by the External Reference Group for the NSF. I'm sure Professor Wilkinson did this last year too. I wanted to reinforce the message from the DOH. Many of you attended meetings, and discussion groups that supported the ERG in collecting their thoughts. That included children and families that came to the well-attended event at the Tower of London. There have been many patient focus meetings discussing a range of issues, and you will not be surprised to hear that transport was top of the list, followed closely by access surgery, and in particular the needling. holidays, education, and information. Other meetings have included clinicians as well as patients and carers, and those discussions include issues such as prevention, dialysis, transplantation, and care towards the end of life.

So in conclusion, how will all these opportunities work for us? There are various initiatives throughout the NHS that we need to harness and make work for renal services. The NSF will provide further opportunities to improve the quality of care for renal patients, that we cannot afford to miss. You need to visualise the future, and you need to help your local renal unit in realising that picture. Your unit will want to know your views. You can do this individually, or through your KPA, or through the patient forums. I would also urge you, as I said earlier, to participate in the choice consultation. You can help shape the future, and ultimately success can only be measured by you.

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