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Epilepsy Services

I congratulate the hon. Member for Calder Valley (Chris McCafferty) on securing this important and timely debate. I am glad to acknowledge and, indeed, pay tribute to the work of the Joint Epilepsy Council and of the all-party group on epilepsy, particularly its recent report ““The human and economic cost of epilepsy in England””, which has underpinned much of our debate today. The noble Earl Howe, who is a fellow Conservative shadow Health Minister, is a member of that group, and my hon. Friend the Member for Chesham and Amersham (Mrs. Gillan), whom we heard from earlier, is an active vice-chairman. My right hon. Friend, the Leader of the official Opposition, is the secretary. I congratulate my hon. Friend the Member for Ruislip-Northwood (Mr. Hurd) on holding the Government to account over the cuts and postcode lottery in services for epilepsy, and for his part in bringing the report together. I also pay tribute to all the organisations involved in supporting people with epilepsy and their families. Many of those organisations are members of the Joint Epilepsy Council. One such organisation is the National Centre for Young People with Epilepsy, which is based in Lingfield. It does sterling work under the excellent leadership of Professor Brian Neville. Another is the National Society for Epilepsy. My hon. Friend the Member for Chesham and Amersham ably described its services, which are headquartered in the Chalfonts and are under the leadership of Graham Faulkner and his team. I dare say that we are all tempted to try to visit the society, as she so kindly extended an invitation. I would like to take this opportunity to welcome the new Minister. This is the first time that we have met in this debating Chamber, although we met briefly on the Floor of the House. She should be congratulated on her new appointment. With her past experience, I am sure that she will be able to help us with many of the issues. As we discussed earlier, this is a health issue. Epilepsy is a condition but it is not even necessarily a long-term condition. It is not a mental health matter, although clearly it involves mental health considerations, and it is important to stress that those who suffer from epilepsy should not be regarded as being part of the disabled and disability agenda. Above all, as the hon. Member for Calder Valley rightly said, there is a general problem in society in respect of epilepsy. Going back many years, there has always been a lack of understanding in the broad society about it. As the son of a nurse, I certainly remember being taught by my mother not to be frightened of people who have a seizure in the street, but I felt that I was being taught something exceptional and unusual. Also, my wife is a nurse. It is all very well if one understands the condition, but, usually, the fears of others drive the stigma and the lack of understanding that is as much of a battle to overcome as is the need to focus on the best help for those who suffer from the condition. Behind the widely reported headlines that almost half of the 990 epilepsy-linked deaths in England each year are avoidable, that 70,000 patients do not get the drugs that they need, and that the misdiagnosis of patients is costing £134 million annually, the report is indeed hard-hitting. It is extremely thorough in its assessment of the situation and in its recommendations for action. It makes clear the Government’s failure to make the provision of epilepsy services enough of a priority. The report notes guidelines, audits and reports published in each year since 2001. In 2001, the chief medical officer highlighted"““the serious and long-standing weakness in the standard of care””" for epilepsy, and in 2002 the national audit of epilepsy-related deaths showed that"““39% of adult deaths and 59% of deaths in children were considered to have been potentially or probably avoidable””." In 2005, there were 990 deaths from epilepsy, of which 400 may have been avoidable. The Government’s response was the action plan for epilepsy in 2003. In her winding-up speech, will the Minister tell us how her Department has delivered on it? Has access to neurology services improved, bearing in mind that spending money is not the same as improving services, and that the £1.2 million that was earmarked was delivered through the short-lived NHS Modernisation Agency? Missed diagnosis and misdiagnosis are all too common for people with epilepsy. What plans do the Government have to improve and broaden the use of diagnostic services such as EEG scanning, particularly during sleep or after a time of being deprived of sleep, where appropriate? Have pathology and post-mortem services been modernised, and have support and information for families bereaved by epilepsy improved? On that particular issue, has the Minister yet looked into the cuts to chaplaincy services in our hospitals? They are key services in the support and counselling of those who are dealing with sickness and death. Likewise, could the Minister tell us what percentage of general practitioners are GPs with special interests—that is the title that is now bandied about—and, of those, how many are trained in neurology? What progress have the medicines management programmes made? The all-party group said that a review of the action plan is needed urgently. I hope that the Minister will tell us whether she agrees and what she is doing about it. The all-party group expressed its concern about non-implementation of the National Institute for Health and Clinical Excellence guidelines on epilepsy. The Minister will be aware of her predecessors’ failure—I am sorry to use the word—to avoid boom and bust in our NHS. The Government’s financial mismanagement resulted in cuts to our NHS last year. With a national service framework still eight years away, there is nothing to give epilepsy services the credence that they need at a local level. Until the Government accept the measures set out in our independence and accountability White Paper, the lack of accountability to patients and the public by the ministerial team in particular and by our NHS will continue to render the Government’s cry of local blame farcical and deeply cynical. The Minister will be aware of the statement that the Department of Health made to the BBC in response to the report:"““In cases where evidence is brought to the department that local NHS is not funding NICE guidance then we will ask Strategic Health Authorities to intervene.””" How many such cases have she and her Department so far been presented with? The subject of epilepsy specialist nurses is obviously one that is close to the Minister’s heart, as she was formerly a nurse. We are glad that someone in the health ministerial team has that background experience. The first ESN was appointed in 1988. There are now around 152, although epilepsy organisations have been campaigning for the number to increase to 920 in England. The 2004 NICE clinical guidelines stated that"““epilepsy specialist nurses should be an integral part of the network of care of individuals with epilepsy.””" That was reinforced by the Under-Secretary of State for Health, the hon. Member for Bury, South (Mr. Lewis), when he said in answer to a parliamentary question:"““Specialist epilepsy nurses provide an additional clinical resource and have spearheaded the development of nurse led and fast access clinics, monitoring treatment regimes and seizure control, support and information on aspects of medication and side effects and lifestyle precautions.””—[Official Report, 21 November 2006; Vol. 453, c. 77W.]" In spite of that, some 8 per cent. of ESNs across the UK are threatened with redundancy, reduced hours or assignment to non-specialist duties, or are not being replaced. Furthermore, 72 of the current ESN posts were created because of pump-priming funding through Epilepsy Action. Agreements were made with the NHS trusts concerned that the posts would continue once the pump-priming funding expired. Through the scheme, Epilepsy Action provided £30,000 to £50,000 of financial support to NHS trusts to set up epilepsy specialist nurse services. Since the scheme was set up in 1995, more than £2.5 million has been invested, and 83 nurse posts have been created in the NHS. However, seven NHS trusts have not honoured their agreement to continue funding the posts once the pump-priming funding ceases. Not only is that deeply disturbing—indeed, shameful—in its own right, it jeopardises the provision of future seed-funding by charities that are involved in long-term and special conditions such as epilepsy. Another example would be the funding in 2003 by the Community Fund and the Wolfson Foundation of a new MRI scanner for the National Society for Epilepsy, which is another key member of the Joint Epilepsy Council. What does the Minister have to say to the seven trusts that have cut the funding? I received an interesting answer to a parliamentary question the other day. In it, the Chief Secretary to the Treasury, who was then a Health Minister, revealed:"““In relation specifically to the treatment of patients with epilepsy, paramedics can supply and administer rectal diazepam, whilst EMTs””—" emergency medical technicians—"““can only administer the drug if it was already in the possession of the patient.””—[Official Report, 25 June 2007; Vol. 462, c. 228W.]" That answer seems to suggest that there is little difference between paramedics and emergency medical technicians, yet when we consider the APPG’s finding that 70,000 patients do not get the drugs that they need, that response becomes much less innocuous. The Chief Secretary to the Treasury, a former Health Minister, also told me that there is no regular collection of data on how often ambulances carry paramedics and that ambulance staffing is up to the local ambulance trust. It seems that those with epilepsy have a postcode lottery in not only elective care, but emergency care. I come now to a matter that has not yet been mentioned and may even be regarded by some as de minimis. In my increasingly distant past I used to suffer from a severe form of migraine called cluster headache, which has nothing to do with epilepsy. Fluorescent lighting was an immediate trigger of cluster headache and was extremely difficult to deal with. I was intrigued to note that in answer to a parliamentary question asked by my hon. and learned Friend the Member for Torridge and West Devon (Mr. Cox), the Under-Secretary of State for Health, the hon. Member for Bury, South admitted:"““It is known that some people living with lupus and epilepsy, and other long-term conditions, may be affected by energy saving light bulbs. We have made no assessment of the number of such people affected.””—[Official Report, 12 June 2007; Vol. 461, c. 992W.]" That seems somewhat cavalier of the Government, particularly considering that in March this year the last Prime Minister and other EU leaders agreed to phase out old-fashioned bulbs in private homes by 2009—that is quite a short period of time—in order to reduce carbon dioxide emissions. Given concerns about the effect that the show surrounding the presentation of the new London Olympics logo had on those with epileptic conditions, it is vital that we take such potential threats seriously. If the Minister has not made an assessment in relation to that, I hope that she will inform us what steps the Department is prepared to take to ban the sale of tungsten bulbs, either directly through the Government or via the EU directive. I am, of course, fully supportive—as I think we all are—of encouraging the move to energy saving light bulbs. However, we must ensure that we do not condemn thousands of people to an existence that provokes a condition that for them outweighs the unquestionable benefit to the environment, let alone the burden put on health services. On 24 June the Department told the Daily Mail:"““This is a developing area and we have no further comment””." I hope that the Minister will take the opportunity to ensure that that is regarded as an historical statement and that she has something further to say on the matter. Once again, I pay tribute to the APPG and the Joint Epilepsy Council for producing this rigorous report. I know from my work with the all-party group on malaria what an undertaking it is to produce a report of such significance and authority. I hope that the Minister will join me in that sentiment, and will address the concerns raised by the report and those mentioned during this debate.