HC Deb 17 June 1998 vol 314 cc482-8

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Dowd.]

10.51 pm
Mr. Stephen Twigg (Enfield, Southgate)

I am pleased to have the opportunity to raise this important subject in the House. Epilepsy is the most common serious neurological condition in the United Kingdom, and 30,000 people a year are newly diagnosed with it. One in 50 of our population are affected by it at some time in their lives, and in 1996 about 1,000 people in this country died from epilepsy. Despite those stark figures, epilepsy remains a much neglected area. It is still treated as something of a taboo subject, widely misunderstood and often stigmatised.

Late last year a constituent of mine, Tricia Odd, wrote to me and told me about the death of her daughter Katy in April 1997. Katy was 19 and studying radiography and radiotherapy at City university in London when she died suddenly from epilepsy. She had had her first seizure when she was eight years old, and at the age of 13 she wrote a moving school essay under the title, "Epilepsy—The Voice from Within".

Katy wrote: When I have a fit it's as though someone or something in my head has taken control of my body and mind. I'm not asleep but awake, I'm not dead but alive … This is the voice from within me … but I'm not going to let it rule my life". Katy's death was a tragic waste of a promising young life. Mrs. Odd and her family are determined that lessons have to be learnt from her daughter's life and death.

When I received Mrs. Odd's letter it had a powerful impact on me. My mother Jean acquired epilepsy when she was 50 as the result of an especially nasty accident. Six years ago, she died suddenly and unexpectedly during an epileptic seizure. Tonight's debate enables the House to draw some lessons from the lives of Katy Odd and Jean Twigg.

I am grateful to Epilepsy Bereaved?, the National Society for Epilepsy and the Royal College of Nursing for their advice and information which has been invaluable in preparing for this evening's debate. In the limited time available, I shall focus on three main areas: first, care for those who are living with epilepsy; secondly, improving the treatment available and raising public awareness about epilepsy; and thirdly, the critical area of research into sudden death in epilepsy.

The quality and availability of care varies enormously for people with epilepsy. Many people have excellent care and access to good services, and in some parts of the country, the availability of care is very good indeed. I am pleased to pay tribute to the hard work and dedication of nurses, doctors and other health care workers delivering such care.

There is a real problem with the lack of referral opportunities to specialist clinics. There are very few specialist clinical provisions. Misdiagnosis is, I am sad to say, widespread. I am told that of those attending the National Society for Epilepsy assessment centre, something like one in five have been found not to have epilepsy at all. Yet some have been taking anti-epileptic medication for years. It is a complex condition and, as such, requires a complex multidisciplinary approach. I am told that, today, two in five cases are not referred to a specialist, only to a general physician, and that one in 12 are not referred to a neurologist at all.

Two specific suggestions have been put to me: first, that the situation that I have described briefly would be improved if it were easier for cross-regional referrals to be carried out; and secondly, that epilepsy should be considered for inclusion in the Government's new arrangements for commissioning specialist services. I would be grateful for my hon. Friend the Minister's comments on those two suggestions.

Mr. Brian White (Milton Keynes, North-East)

As the parent of a stepson who has epilepsy, one of things that I feel is deficient in terms of people looking for care is the support services for parents and families. There does not appear to be very much support for the families of people with epilepsy. Will my hon. Friend address that point?

Mr. Twigg

I am grateful to my hon. Friend for raising that matter, and I will come to some related issues in a moment. In a short debate covering the whole area of epilepsy, it is important that the different issues are addressed. I am grateful for my hon. Friend's intervention, which connects very much with the area that I am moving on to.

The stigma attached to epilepsy is very real, and it remains so. Epilepsy is a cause of social exclusion. I am told that unemployment rates for people with epilepsy can be as high as 30 per cent. The training for those working in the health field is often very poor. One of the examples cited to me is that very few, if any, postgraduate courses in neurology include specific teaching on epilepsy. More generally, there is an urgent need for improved training, not only for health care professionals, but for all those working with people with epilepsy—whether they are teachers, employers, prison officers or others.

The education service, and schools in particular, have a great opportunity to educate young people about epilepsy, and thereby to challenge some of the prejudice and reduce some of the stigma associated with epilepsy. One of the points made by the Royal College of Nursing to me was that school nurses can play an important role in educational work. That can have benefits not only in terms of raising general awareness, but for children in schools who have epilepsy, and their families.

There is good practice from which we can learn, and I have been finding out more about it in preparing for tonight's debate. For example, the good work done at the Walton centre in Liverpool was praised by the Audit Commission last year. There are some good examples of work in other countries—notably, I am told, in Holland. I welcome the National Society for Epilepsy's funding of a professional chair in epilepsy at University College hospital—the first in the UK. It is very much to be welcomed and will be positive in moving the subject forward.

I hope that my hon. Friend the Minister will consider establishing a national service framework to provide agreed standards of epilepsy services across the country, and that he will consider including epilepsy within the local targets for health improvement programmes currently being considered by the Government. Both those ideas merit consideration because of the prevalence of epilepsy and the high death rate that is associated with it.

On the crucial question of research, as recently as the 1980s, few medical textbooks dealt with mortality or sudden death associated with epilepsy. The widespread lack of information and research led a group of families to form Epilepsy Bereaved? in 1993—the group became a charity two years later. From my discussions with members of that group and with Mrs. Odd and her family, it has become clear to me that more information is needed, and that that information needs to be provided in a balanced and appropriate way.

Mr. Richard Allan (Sheffield, Hallam)

I am grateful to the hon. Gentleman for giving way and for raising this subject. I was made aware of the problems of sudden death in epilepsy by my constituent, Mrs. Eileen Stirling. I agreed to follow up the issue, and want very much to add the voice of Sheffield, Hallam to that of Enfield, Southgate in calling for much more research, particularly into sudden death. I am also concerned about the suicide rate among epileptics, which is a serious problem—the pattern is well attested. I hope that the hon. Gentleman will agree that research is also needed on that.

Mr. Twigg

Absolutely, and I am grateful to the hon. Gentleman for raising the issue of suicide. Research must examine, not only medical questions, but the social and other consequences of epilepsy for people living with epilepsy, and their families. More research is needed, but existing research also needs to be taken seriously—it has often been neglected or ignored, and many of the lessons that we are starting to learn now could have been learnt years, if not decades ago, if that research had been taken seriously.

Dr. Evan Harris (Oxford, West and Abingdon)

I am grateful to the hon. Gentleman for giving way. He will know that I was first made aware of sudden death in epilepsy through the sudden death of a good friend, William Preston, with whom I was at college in Oxford 10 years ago—he was also known to the hon. Gentleman. An investigation of the causes of sudden death needs to be national, so that there are sufficient numbers to feed into the research. I am looking forward to hearing the Minister say how the Government can support such research projects.

Mr. Twigg

I am grateful to the hon. Gentleman for that. A programme of research needs to be national to ensure that it is fully comprehensive and takes account of the different interests that are involved.

The Clinical Standards Advisory Group is currently studying the availability of clinical services—I am sure that my hon. Friend the Minister will say more on that in his closing remarks. I hope that he can assure the House that the Government will seriously consider the outcome of the group's report, which is due, I think, in about a year.

From my discussions with the various organisations, it has become clear to me that the Government's interest in the subject has been widely and warmly welcomed—tonight's debate is, therefore, timely. However, Epilepsy Bereaved? has emphasised its belief that, in addition to considering general standards, we must deal with the appropriate standards for those who are at greatest risk, particularly those aged between 15 and 35. Moreover, detailed information must be gathered from families who have been bereaved, especially in recent years. As the hon. Member for Oxford, West and Abingdon (Dr. Harris) suggested, any research or audit that is undertaken must include such details if it is to be fully comprehensive. That is necessary not only to ensure that research is as effective and wide-ranging as possible, but to enable bereaved families to have a voice. Although it is vital that any audit or research listens to the health care professionals and to experts working in the field, it is equally, if not more important, that a voice is given to the bereaved families. Such families have the right, not only to the care and support that they need, but to find out why their loved ones died, which could ensure that such deaths do not occur in future.

All hon. Members have a duty to raise awareness about epilepsy, to challenge the still widely held prejudices and misunderstanding and tackle the social exclusion and other disadvantages that are often experienced by people with epilepsy and their families, to improve the care and support provided throughout the country for those affected and to support and encourage research, so that the death rate from epilepsy is reduced.

In the previous Parliament, the all-party group on epilepsy was very active. I believe that it is still in existence, but it is a little more dormant in the new Parliament and I am sure that hon. Members on both sides of the House, in all parties, will be keen to join me in encouraging wider membership of the group and increasing its activity and profile. Tonight's Adjournment debate is an opportunity to kick-start that process.

I look forward to the response of my hon. Friend the Minister and am confident that he and the Government will take the issues of care, research and increasing public awareness very seriously. By doing so, they will be providing an appropriate and fitting way to remember the life of my late constituent, Katy Odd.

11.5 pm

The Parliamentary Under-Secretary of State for Health (Mr. Paul Boateng)

This is a timely and welcome debate on a subject of considerable importance and I congratulate my hon. Friend the Member for Enfield, Southgate (Mr. Twigg) on having chosen it as a topic for our Adjournment debate tonight. The number of hon. Members on both sides of the House who have intervened is an indication of the seriousness with which the House takes this issue.

In that regard, we owe a debt of gratitude to Epilepsy Bereaved? and all those who have given their time, efforts and energy to support its valuable work for having raised the consciousness of the House and hon. Members about sudden, unexpected death from epilepsy. The stream of correspondence that has come into my Department from families who are living with the reality of bereavement and who are determined, as Katy Odd's family is, that their loved ones shall not have died in vain has helped to make the whole House conscious of the importance of the issue.

Only a few weeks ago, I met a delegation of epilepsy specialists, carers, family members and others organised by Epilepsy Bereaved? They shared their concerns and experience with me and officials. No one listening to them could be under any illusions as to the scale of the problem. Almost 1,000 people die each year in the United Kingdom during, or shortly after, an epileptic seizure. Those deaths are due not to accidents caused by the seizure, but to the seizure itself.

As a result of that meeting, which was helpful and productive, we have invited the delegation to consider submitting a bid for a national sentinel audit into epilepsy services. That is a new and extensive form of clinical audit that is very much part of our new national health service and is designed to ensure that we enable practitioners, including those in primary care—I hear what my hon. Friend has said about the important role of general practitioners—to compare their practice against agreed national standards and, we hope, to address areas of shortfall or poor practice as a result.

More research remains to be done, as a number of hon. Members have said. We do not know the extent to which improved standards of care for epilepsy patients would have a direct effect on the death rate from epilepsy seizures. More work needs to be done in that area, but research suggests that some people with epilepsy may be more at risk than others, which may have implications for carers as well as for the medical profession.

For example, in many investigated deaths from epilepsy, patients died alone, often in their sleep. They were also predominantly young people, aged between 15 and 37, which is, as my hon. Friend said, the key age group. If, as I hope, a national sentinel audit bid is successful, it might enable us to identify the at risk population. It would also give some clear pointers to where further research is needed.

I am committed to ensuring that we create a context in which it is possible for such research to take place. The Medical Research Council funds a great deal of research into epilepsy and did work worth more than £600,000 in 1996–97. General practice has made a valuable contribution to epilepsy research, especially in terms of epidemiology, but we cannot be complacent. The Clinical Standards Advisory Group recently awarded a contract to the Institute of Neurology to advise Ministers on standards of clinical care for, access to and availability of services to national health service patients with epilepsy.

Mr. White

Has my hon. Friend considered the experience of other countries, particularly Scandinavian countries and Holland, where a lot of work has been done on the causes of epilepsy and the treatments available? Will he consider using some of the lessons of those schemes in the United Kingdom?

Mr. Boateng

We are committed to considering good practice among our European partner countries and I shall ensure that that is taken on board.

I look forward to receiving a draft report in May 1999, and a report to Ministers is expected in autumn 1999. We already have the benefit of working with the medical profession to raise awareness. The primary care already referred to is vital in that regard. The average general practitioner is unlikely to deal with enough cases to develop expertise and knowledge in epilepsy, yet patients rely heavily on GPs as the gatekeepers to specialist services and the monitors of their conditions. We must ensure that we give GPs the back-up necessary to enable them better to fulfil their role. The Department of Health has funded a care project run by GPs in Cheshire, which is evaluating provision of services to people with epilepsy in the community. Its interim report highlights a number of areas of concern in relation to epilepsy services, including use of older epilepsy drugs, inadequate follow-through, misdiagnosis and inadequate information. More generally, and more disturbingly, the study identifies a low level of interest and awareness of epilepsy among GPs and shows variations in prescribing and referral habits. That work helps us to see the potential health gains of improvements in epilepsy services. Considerable gains could be made through improved prevention and from accurate diagnosis and the best possible management, both of which require expertise and follow-up.

It is encouraging to note that an increasing number of general practices have undertaken audits of care for patients with epilepsy. Through that, they have developed an interest in epilepsy and in improving services. For some GPs, that has led to developing competence in diagnosis, changing and adjusting medication and providing support and advice. Some practice nurses are also taking an interest in epilepsy and specialist nurses make a contribution to the development of expertise in epilepsy treatment.

I pay tribute to carers, who play a vital role in ensuring that those who suffer from epilepsy have the support and care that they so greatly need. The creation of larger primary care groups will present opportunities to explore new models of care delivery and people with chronic conditions such as epilepsy will have the opportunity to influence the changes as the new NHS—modern and dependable—unfolds. Carers and voluntary groups will have a special role in that process.

We must grasp the nettle of confronting the real prejudice and stigma that continue to affect those who suffer from epilepsy. That prejudice harks back to the middle ages, with the idea that people with epilepsy were possessed by evil spirits as they suffered their convulsions. Such ideas have no place at all in our society as we move into the next millennium.

I assure hon. Members that we will respond to the challenge laid down by Katy Odd in "Epilepsy—The Voice from Within". In partnership with the voluntary sector, which plays such an important role—I am glad that we have been able to support its efforts with section 64 grants to assist in the development and publication of information—and with carers and epilepsy sufferers themselves, listening to the user, we will ensure that that voice is amplified throughout the service and that the standard of care that we are all entitled to expect in the new NHS is delivered.

That is our commitment to Katy Odd, to Jean Twigg and to their families, as well as to the many others who look to the House for leadership. That leadership will be forthcoming.

Question put and agreed to.

Adjourned accordingly at seventeen minutes past Eleven o'clock.