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Epilepsy Services

The hon. Lady has admirably highlighted the need for more information, not just once a firm diagnosis has been made but right at the beginning, so that the period of waiting and anxiety can be minimised. We can never get rid of it completely, but the more information, the better, and such information is not always readily available at the right source. The NICE guidelines issued in October 2004 covered diagnosis, investigation, classification and treatment. Guidelines were also produced specifically for women—because of the issue of their taking medication in pregnancy—for children and young people, and for older people, who have slightly different needs. The guidelines are frequently not fully adopted. There is a problem with NICE guidelines in general, because in many areas of medicine they have no clout. There is no compulsion to adopt them, and although one would hope that PCTs want to optimise best practice, the financial situation often works against service change in the short term. As the hon. Member for Calder Valley highlighted, there are savings to be made by doing things properly, and the money saved can be reinvested in the service, so I do not want to get too hung up on the financial aspects. As has been mentioned, there have been problems with referrals after diagnosis. The NICE standard states:"““Any person who has had a possible seizure should be seen within two weeks by a specialist medical practitioner with training and expertise in epilepsy.””" It goes on to state that tests such as electroencephalograms, or EEGs, and MRIs should be available within four weeks of a specialist asking for them. The all-party group’s report mentioned referral, and funding panels deciding who is referred. If the guideline is that anybody who has had a possible seizure should be referred within two weeks, presumably the GP, who knows the patient best, makes that decision. As we have heard, GPs frequently miss the first seizures. I fail to see how a GP can suspect something, and somebody else then second-guess their decision and provide a further filter. Will the Minister look into that, so that we can be confident that everything is being done in all PCTs to ensure that the guideline is being met? The report highlights particular problems with access to diagnostic tests, and the case of someone who had to wait two years. Although when we write such reports we always love to find the worst possible case, so that we can say, ““Isn’t that terrible?””, the wider statistics bear some consideration. A recent survey by Epilepsy Action showed that only 26 per cent. of the 185 respondents who needed MRI scans had them within four weeks. Will the Minister outline how this issue will fit into the 18-week patient pathway, which is the centre of attention at the moment? The survey by Epilepsy Action also pointed out that only 60 per cent. of those affected visited their GPs after their first suspected seizure, which brings us back to the issue of public education and raising awareness of the problem. Only 60 per cent. were referred to a specialist straight away, 29 per cent. were referred after a period of time, and 22 per cent. were not referred at all. That suggests a gap in the knowledge of some GPs. It may just be a lack of awareness of the NICE guidelines, but it may be something more fundamental. Only 27 per cent. were referred to an epilepsy specialist, while 53 per cent. saw a general neurologist and 22 per cent. another consultant. Some 50 per cent. of respondents waited longer than eight weeks for a first appointment with a neurologist or other epilepsy specialist. The problems of accessing good treatment may have more serious knock-on effects. We have heard that, each year, approximately 990 people die of epilepsy-related causes, of whom 365 are young adults and children. More worryingly, the 2002 national audit of epilepsy-related deaths concluded that 39 per cent. of adult deaths and 59 per cent. of child deaths were considered potentially or probably avoidable. That is about 400 deaths a year that could be avoided. I am not clear about how they could be prevented or reduced, but better information would be helpful. The report cites the case of a family who had not realised the full impact of epilepsy. There is a hint that they hoped that it would go away, or that they wanted to minimise it. Information for parents in particular is vital, so that they can come to terms with their child’s condition and help them to manage it. On treatment, it was interesting to see that the quality and outcomes framework did not necessarily equate to the Government’s guidelines on best practice. Dr. Smithson stated that it"““measures the basic, not the best care.””" He stressed the need for information, support and empowerment for patients to self-manage their conditions. One thing in the report caused me a little alarm, and here, I declare an interest as a pharmacist who is still on the register. It states:"““We understand that some pharmacists are now saying they can do an epilepsy medicines review in a chemist’s shop.””" They are called pharmacies nowadays, but I shall leave that point. It continues:"““That proposition would reduce, not improve, the standard of annual reviews.””" That completely misses the point. I am sorry to pick up on a part of the report that I disagree with, but ““medicines use”” reviews are intended to help patients get the best use out of their medicines. As has been mentioned, polypharmacy is often used, as people often have other long-term conditions. The reviews are about working with the patient to ensure such simple measures as drugs being taken at the right time and in the right combinations, so that they have the optimum effect and benefit. Any changes recommended are automatically referred back to the GP, who, if he is doing his job properly, should be able to use the information in an annual review. The two elements are not mutually exclusive. By making better use of what is available on the high street—the one thing that we can be certain of is that people have to go to the pharmacy for their medication—a source of help and advice is provided. The passage of the report to which I referred was a disappointing element of it, but I hope that it was just down to a misunderstanding, and that the professions can work together across boundaries to do all that they can for patients. There are a number of work force issues to consider. England has one of the lowest numbers of neurologists in Europe. France has three times as many by proportion and Italy 14 times as many, which I find staggering. The Royal College of Physicians has estimated that"““to provide comprehensive neurological care, including the care of the acutely ill neurological patient, one whole time equivalent consultant neurologist is required for 40,000 population. This model demands 1,250 NHS neurologists, 175 centre-based neurologists and 78 academic neurologists, which gives a total of approximately 1,400 nationally.””" It conceded that that target is perhaps unrealistic in the short term and called for a target of 909 whole-time equivalents across the UK by 2012. Will the Minister elaborate on what is being done to achieve that target? Epilepsy nurses are an integral part of the NICE guidelines. Many patients find it particularly helpful to talk to a specialist nurse, because it is not daunting and is often done in an informal setting. They often feel that they can ask the silly questions that they cannot ask a doctor. There are only 152 epilepsy nurses, and we need to reach a target of about 920 before there will be a proper network of nurses who can help deliver the guidelines. It is clear that an awful lot needs to be done. We are talking about a group of patients who are shy in coming forward, but who deserve help and support. For many, epilepsy is a condition to be frightened of, as was said earlier, but with the right information, support and treatment, many can live with it comfortably. At the moment, we are not helping enough people to achieve that.