Opening Address, National Symposium, British Library - Early management of renal failure: prevention or prevarication?

Speech delivered on Fri 18th Jun 2004

First I want to thank the Epsom and St Helier University Hospitals NHS Trust for inviting me to take part in this symposium.

It is an honour, and just a little daunting.

Chronic renal failure has profound consequences, not just for quality of life of the 30,000 people with the condition but for their families as well.

I met a renal patient yesterday at the Clinical Services Review event over in Addington. She told me about life on dialysis. Making a round trip of 90 miles three times a week to get to the dialysis.

Now for her healthcare has come closer to home with a new dialysis centre.

But I have no doubt that regular dialysis requires a lot of give and take to build lives around the sessions.

So making those services as people and family centred as possible is vital, fitting in with the way people want to lead their lives.

And of course that is where Part 1 of the NSF for Renal Services comes in. It has been widely welcomed as offering a vision and setting a direction of travel for developing services and ensuring equity of access across the country.

Renal services have been neglected. The NSF is a recognition of that. As Shadow Health Secretary for the Liberal Democrats I to welcome the NSF.

Indeed I think that the idea of NSFs is an innovation that should survive any future change of administration.

However, this NSF is one of the new generation of target free and cashless NSFs. Getting the NSF to have traction with local commissioners at a time when they themselves are grappling with a huge agenda of Government must do's is very challenging. But it must gain traction.

There are plans for a national comparative audit of the renal services provided by PCTs and NHS Trusts over the next two years. The audit is very important. It is an opportunity to get the attention of commissioners, providers, patients and carers.

However, I can't help wondering why such a mapping exercise was not incorporated into the NSF process from the outset. But at least it should deliver a baseline.

Armed with the baseline information I would expect the Healthcare Commission to be asking some awkward questions of commissioners and providers. Indeed I would expect MPs and patients groups to be doing the same.

For me delivering the vision of the NSF requires a concerted effort to bring down the boundaries between primary care and renal units, and for that matter social care too.

That requires a dialogue between primary care and renal specialists. More important still it requires a dialogue with patients and carers.

That dialogue needs to be frank, it should be challenging.

For example, why should age be used as a proxy for determining whether or not someone is suitable for a referral?

Delaying a referral because someone is frail and dependent may seem the right thing to do. But delay may deny that person a fresh lease of life and treatment may help to postpone or prevent other complications and even create an opportunity for some respite for their husband or wife from their role as a carer. Something that in National Carers Week I would particularly like to underline.

Getting this right is important.

But is not just about age.

Currently, a fifth of people with renal failure die every year. For a variety of reasons - some cultural, some genetic - South Asian and African-Caribbean communities are three to five times more likely to suffer renal failure.

Not only must we reduce the death toll, we must ensure that those who are living with renal failure are managed in a joined up way and where ever possible have the opportunity to self-manage. That means equipping primary care staff with the necessary knowledge and skills.

So for example, is there an opening for a primary care practitioner with a specialist interest in renal care?

The consultation within the Epsom and St Helier Trust area around the plans for Better Healthcare Closer to Home offers some exciting prospects. The concept of local care hospitals could help to build those links between social, primary and secondary care.

The NSF implies a significant expansion in renal services, increased capacity is the key to delivering greater choice and ending covert rationing of dialysis. One estimate I have seen suggests that to meet demand in the UK would need 483 new dialysis stations, both the staff and the equipment, every year for the next ten years.

So what can be done to manage the demand?

Well that brings me onto the question posed in the title of the day. Early management of renal failure: prevention or prevarication?

Now part 1 of the NSF is focused on dealing with dialysis and transplants. Both critical. But about treating the disease rather than tackling the causes of the disease.

Prevention is to be dealt with in part 2 of the NSF. But part 2 is still some way off.

I understand that there is no date for publication but that the external reference group have submitted advice to Ministers and that officials have been asked to write it up. Perhaps those lacking a charitable disposition might say that is where the prevarication comes in!

In my view waiting for part 2 of the NSF is not a good enough reason for moving the preventing and postponing renal failure agenda forward.

Clearly there are many causes of renal failure that cannot be prevented or arrested yet. But given the damage that can be done to kidneys by poorly controlled diabetes and high blood pressure it is vital that more is done to detect these conditions at an early stage.

And when we talk about diabetes and high blood pressure we need to look at issues like salt consumption, cholesterol, obesity and smoking.

Rates of type 2 diabetes are rising fast, the numbers of undiagnosed diabetics and the cost of their delayed treatment is a major concern.

Obesity is a key risk factor for diabestes, indeed obesity is fast challenging smoking as the number one preventable cause of death in this country. Lifestyle changes, through diet and exercise can make a significant difference as can regulatory changes like front of packet labelling.

I firmly believe that more needs to be done to develop screening programmes. Whole population screening is costly and not effective. But already we are seeing community pharmacies like Lloydpharmacy and Boots offering screening tests for diabetes, cholesterol and blood pressure. This type of opportunistic screening should be encouraged.

Primary care; whether in the GPs surgery, the pharmacy or the optometrists is well placed to deliver that early warning system.

Just yesterday my boss, Charles Kennedy, had something to say about this question of screening. He announced our intention to develop a targeted personal health MOT.

Developing such an MOT would involve a thorough evaluation of existing screening tests and their efficacy and would identify the gaps where further research and development should be pump-primed. The ability to target the tests is critical and the roll out of the electronic patient record creates the possibility of offering people screening based on a range of risk factors including age, ethnicity, gender, and medical history.

In the short-term I would like to see more opportunities being created for tests on an opportunistic basis. For example, the National Blood Transfusion Service could offer donors a range of tests while they give blood. This could be a free service and might be an extra incentive to people to give blood.

The costs of treating renal failure are huge.

Preventing and postponing the onset of kidney disease has to be a priority for research and development and for health promotion work. Helping people to make healthy choices is essential to the long term future of the NHS.

But even with effective screening and a seismic shift in population health people will still suffer from kidney disease.

That brings me on to my final point. Transplants.

The Government have recommended transplantation over dialysis as the most effective form of treatment for renal failure. Transplantation costs the same as dialysis in the first year, after which its cost drops dramatically.

Last year there were 1690 renal transplants and that is about the number in each year since 1994 .

There are currently 5,750 people waiting for a transplant. That's the official figure, again it is hard to know how much covert rationing takes place to depress that figure.

But UK Transplant have said that they expect the number of people receiving treatment for renal failure to increase by 50 per cent over the next ten years. This comes in the back of a 20% increase in the numbers of people on dialysis in the past five years.

We need more organ donors.

Polls have found that 90% of the population say they are willing to donate their organs for transplantation after their death, yet only 20% formally register.

So how is this gap to be closed?

One way to bridge the gap between what people say they want to do and what they actually do would be to adopt a system of presumed consent.

Such an opt-out system would not mean that the views of relatives are ignored. But it would change the nature of the discussion with family members. Most families do not discuss their wishes about donation and, when asked at the time of bereavement, many opt for the default position, which is not to donate. Only to later regret their decision.

I do not pretend that presumed consent is the complete answer to the shortage of organs. But it should be part of the wider Government strategy to increase donation rates.

So in conclusion. This is an exciting time. The NSF has created an opportunity to think about how renal services should develop now and in the future both to meet and manage demand.

I hope you find today's symposium stimulating and challenging.

The challenge is to make a reality of the rhetoric in the NSF, to engage with patients and carers, to work together across social, primary and secondary care to create a seamless service.

Thank you.