Provision of Epilepsy Services

Baroness Ford Excerpts

Tuesday 30th November 2010 Lords Chamber

Tabled By

[Baroness Ford]

To ask Her Majesty's Government whether they plan to increase the provision of epilepsy services

[Baroness Ford]

My Lords, I thank all noble Lords for their attendance this evening. Despite my accent, I promise not to return to the question of an AV referendum.

This Question for Short Debate covers an important topic and I am very grateful for the time to address it. I welcome the Minister and thank her for her courtesies before today's debate. She will know that absolutely no slight is intended when I say that we would have been delighted to see the noble Earl, Lord Howe, in his place—because he has been such a stalwart champion for epilepsy services in his previous role as honorary chairman of NSE—but I am well aware that the noble Baroness understands the condition well, and we know that she will respond very thoughtfully to the points that will be made this evening.

I thank the Government for their decision not to proceed with mandatory substitution of generic drugs. The prospect of this change was met with absolute dread by many people with epilepsy. In lots of long-term conditions, but especially epilepsy, continuity and stability of drug treatment is absolutely essential, and even very small changes can have profoundly damaging effects. The Government did absolutely the right thing and we are grateful for it.

As the honorary president of Epilepsy Action, I declare my interest; as a parent of children with epilepsy, I declare my continuing frustration. Our story is like many other families—original misdiagnosis, years of trial and error in drug use, absolutely no continuity at the crossover from paediatric to adult care—in effect, experiencing all the highs and lows of treatment. Families who live with epilepsy understand all this and much, much more. This is a condition that affects many individuals and families in our country. Almost half a million people are affected by epilepsy. 990 people in England die every year of epilepsy-related causes, and tragically about 400 of these are considered potentially avoidable. Almost 70,000 more people with epilepsy could have their seizures controlled by good treatment, and almost 75,000—75,000—are taking aggressive drugs unnecessarily due to misdiagnosis.

This is an important point and one which I hope the Minister might reflect upon. There is a current misdiagnosis rate for epilepsy of between 20 and 30 per cent. We should ponder for one moment on what this might mean in other conditions and diseases. If this statistic was true for cancer, people would be told that they had the disease and treated aggressively for it, only to find some time later that this was not the case. Can we imagine the distress and scandal that that would cause? It is unthinkable. Of course, we do not have that rate for misdiagnosis of cancer, principally because every suspected cancer is referred to a specialist—and rightly so. People would not accept for a moment that they would be seen by a general physician with no specialist knowledge of cancer. Yet this is the situation with epilepsy. The NICE guidelines state that all people with suspected epilepsy should be seen by an epilepsy specialist. But half of all acute trusts in England do not employ a specialist, and anyone familiar with the condition knows the difference between seeing an epilepsy specialist and a general neurologist—it is the difference between night and day. Yet more than half of our trusts still have no specialist provision at all. It is appalling that in the 21st-century NHS such a high rate of misdiagnosis persists, with awful consequences for individuals and a massive waste of resources for the NHS. What plans are there are for improving this woeful situation?

Last year, Epilepsy Action published Epilepsy in England: Time for Change—a review of services that highlighted the incidence of misdiagnosis and also drew attention to widespread failings in service provision when measured against the NICE guidelines. We found that, despite the guidelines stating that people with suspected epilepsy should be seen urgently—that is, within two weeks—this was being ignored by 90 per cent of trusts. Only 10 per cent of people see a consultant within two weeks, and, as we know, there is no guarantee that that consultant will be an epilepsy specialist. As anyone with epilepsy will testify, the period between when they suspect epilepsy and when they get a confirmed diagnosis can be very frightening. Until treatment begins they are at greater risk of seizures, are understandably anxious and are at risk of suffering a full range of side effects and consequences. Our review found that in some cases, people had to wait 18 to 24 months for referral to a consultant.

The review also found that provision of specialist epilepsy nurses was poor. More than half our acute trusts do not employ a single nurse specialist, and the figure is even higher for primary care trusts. This is despite NICE guidance that specialist nurses should form an integral part of the care team. Everyone who lives with epilepsy will tell you that when they find a good consultant, it marks a turning point in their condition; but most will also say that finding a specialist epilepsy nurse transforms their quality of life. The hope that specialist nurses can give is immense. Specialist epilepsy nurses are also fantastic value for money in comparison to the greater costs that they prevent with their work. Perhaps I may draw the Minister's attention to the study carried out recently by John Moores University, which made it clear not only that there is a strong clinical case for specialist epilepsy nurses, but also that there is a very sound economic one.

A major step forward for the condition would be for the Government to make sure that the NICE guidelines are implemented. We are not asking for the moon; we are simply asking the Government to make sure that NHS workforce planning takes account of the need to train epilepsy specialists with consultants and nurses. We are asking for all people with suspected epilepsy to be able to see a proper specialist within two weeks. We are asking for all acute trusts to have the correct diagnostic equipment, for patients to have an annual review of their condition, and for those who want a comprehensive care plan to have one. These requests are not unreasonable. Why, uniquely, should people with epilepsy accept a second-rate service?

One further important issue is the potential legal case surrounding the distressing question of foetal valproate syndrome—a condition recognised since the 1980s and found in the offspring of mothers who took sodium valproate in pregnancy. Sodium valproate is a reasonably common anti-epilepsy drug. In this legal case, the families of children born with the syndrome are seeking reparations from the drug company for their children's problems. They claim that the company did not do enough to warn them of the risk of taking the drug in pregnancy. Unfortunately, in October the Legal Services Commission withdrew public funding from the 100 claimants. A responsibility on the part of the drug company may or may not be proved in the hearing, but the families of these children, many of whom live with serious and debilitating illnesses, deserve to have their point of view tested. In response to another question yesterday, the noble Lord, Lord McNally, said that any changes to the legal aid system would “protect the most vulnerable”—I think that that was the phrase. I cannot think of a better and more deserving group of people than these 100 claimants.

Sodium valproate is still being used by many women who may have no knowledge of the potential side-effects. Each year about 5,000 women who have epilepsy become pregnant, and we know from a survey in 2007 that only 21 per cent receive pre-conception counselling. We also know that about 20 per cent of pregnant women take sodium valproate during their pregnancy.

In 2004 a review was undertaken on behalf of the Medicines and Healthcare Products Regulatory Agency. The review agreed that several key principles should be included on sodium valproate product information but, critically, stopped short of advising whether the drug should be avoided in pregnancy. In contrast, the Food and Drug Administration agency in the United States issued a letter in 2009 to healthcare professionals across the US cautioning that women of childbearing age should be treated with valproic acid only where it was absolutely essential.

So I would like to ask the noble Baroness if the Government would consider asking the MHRA to review its guidance on anti-epileptic drug use in women of childbearing age and, in so doing, take into consideration any new evidence that links anti-epileptic drugs to major congenital malformation, neuro-developmental problems and poorer health outcomes in offspring.

I am grateful to all noble Lords for participating in this debate tonight. We all understand how devastating this condition can be for the many thousands of people who suffer, for their families and their carers. Proper basic service provision would also alter, and immeasurably improve, the lives of many people who frankly have enough to deal with without the NHS letting them down. This is an important issue and for too long we have been failing people with epilepsy by allowing and tolerating standards of care that simply would not be acceptable in most other conditions. It really is time for change.