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17 July 2007 : Column 26WH—continued
“Epilepsy specialist nurses should be an integral part of the network of care of individuals with epilepsy.”
However, despite the chronic shortage of ESNs in Britain, recent reports suggest that the current work force is under threat. The JEC feels that it is now being forced to defend the status quo, rather than focusing on expanding the excellent services that ESNs provide. I hope that the Minister will clarify the position.
There are approximately 152 ESNs in England, and epilepsy organisations have long campaigned to increase that number to about 920. Epilepsy Action also recommends that ESNs have a case load of no more than 250 patients with active epilepsy. However, the Government have made it clear that decisions affecting ESN services are made by local health trusts, and that they cannot intervene. The JEC believes that they should do more to prevent local health trusts from seeing ESNs as soft targets when seeking to balance budgets. I welcome the recent dialogue on specialist nursing between voluntary organisations and the then Minister with responsibility for long-term conditions, my hon. Friend the Member for Bury, South (Mr. Lewis). I look forward to the draft guidance on specialist nurses that will be published in early 2008.
Ready access to high-quality, responsive primary and secondary care is crucial for those with epilepsy and would meet the needs of most. However, only 52 per cent. of people with epilepsy have their seizures successfully controlled. The 48 per cent. with seizures not controlled by anti-epileptic drugs should be referred to tertiary care clinics. Unfortunately, there is some indication that it is usually well-educated, assertive and articulate individuals and families who succeed in gaining access to tertiary services. There is concern that many with epilepsy who are less articulate are dissuaded or refused, or give up the struggle with the system, and are therefore denied the opportunity for optimal advice and care.
Between 2002 and 2006, the Government published five reports on the provision of epilepsy care—including the 2002 chief medical officer’s report—along with the 2002 national sentinel audit of epilepsy-related death, the 2003 action plan for epilepsy, the 2004 NICE clinical guidelines on epilepsy, the 2005 national service framework on long-term neurological conditions, and the 2006 White Paper “Our Health, Our Care, Our Say”. All drew much the same conclusions about fragmented and poorly co-ordinated service provision, but provision of services in England for people with epilepsy has not substantially improved over the years. However, the
all-party group recognises that the Department of Health has taken initiatives regarding the care of people with epilepsy.
The NICE guidelines were described as groundbreaking in setting standards. However, their effective implementation and that of the action plan remain in question. The all-party group believes that a lack of funding is a significant reason for the serious gaps in service provision for people with epilepsy. Funding for epilepsy is low compared with funding for other conditions affecting similar numbers of people, such as insulin-dependent diabetes. Funding must be urgently rethought to address the gap in service provision.
Mrs. Madeleine Moon (Bridgend) (Lab): My hon. Friend mentions the need to improve services for people with epilepsy and the huge problem of misdiagnosis. Is there not also another problem to address—the prejudice that still exists against people with epilepsy, and the misunderstanding of the condition among the general public and employers?
Chris McCafferty: My hon. Friend makes an important point. A great deal of prejudice and a lack of understanding still surround the lives of people with epilepsy. Although we are politely using the word “seizures” in this debate, the general public normally refer to them as fits. It is not a pleasant description, but in people’s minds, somebody having an epileptic fit falls down in the street and jerks about, and lots of people just walk past or turn away, not wanting to face it. We should be talking about education and understanding. One of the most important points about the integration, where possible, of disabled children into mainstream schools is that young people grow up understanding the limitations and strengths of their colleagues.
A group of young epileptics in my constituency—in my home town of Hebden Bridge—now have a social group, and they see part of their role as ensuring that people in the town understand what epilepsy is. Of course, not all epileptics have grand mal seizures; some have small seizures that most ordinary people would not even notice.
Epilepsy organisations have pointed out that primary care trusts often seem powerless or unwilling to implement improvements. The reasons given for non-inclusion in local delivery plans were that national targets took priority and left insufficient funding to put in place the necessary resources to enable the trusts and general practices to implement the NICE guidelines. Yes, serious investment of an estimated £150 million is required. However, in real terms that is only £340 per person with epilepsy, which is a small price to pay for their quality of life.
In conclusion, I quickly remind the Minister of the report’s key recommendations: that the Government should urgently put in place a programme to increase the number of neurologists and other relevant clinicians to levels recommended by the Royal College of General Practitioners; that the Healthcare Commission should carry out as a matter of urgency an improvement review to assess formally the provision of epilepsy services in individual health care organisations; and that an action plan to improve services should be developed.
Mr. David Drew (Stroud) (Lab/Co-op): One issue that concerns me is the Prison Service. Much as I agree with the Government’s reforms, which have taken responsibility for prisoner health from the Prison Service and given it to the NHS, there is now an issue of confidentiality. It is quite likely that a prisoner’s epilepsy would not be known to the prison authorities. That could be worrying, because when someone has a seizure, instant action is important. Will my hon. Friend say something about that? Like me, she will be concerned about how the information is passed over. Those who have to care for such individuals should have prior knowledge of their conditions.
Chris McCafferty: My hon. Friend makes an important point. That balance between confidentiality and ensuring proper care for people with a health problem—be it epilepsy or anything else—is well known to all Members of Parliament, and it is a difficult balance to strike. Obviously, confidentiality is important to those in prison. One of the report’s further recommendations is that the Health Committee should consider an inquiry into the provision of health services for people with epilepsy in England. I would like such an inquiry to include the important issue of the provision of services for prisoners with epilepsy.
The last key recommendation is that the Government should accept that for many decades, there has been considerable under-investment in what is a much-neglected condition, and that it is time for the Department of Health to put right the wrongs of the past.
11.24 am
Mrs. Cheryl Gillan (Chesham and Amersham) (Con): I am grateful for being allowed to speak briefly in this debate. I had not intended to do so, but I am so pleased with the way that the hon. Member for Calder Valley (Chris McCafferty) has introduced it, and particularly with the report prepared by the all-party epilepsy group, that I should like to speak briefly in the hope that I can contribute to the debate. Sadly, I shall not be able to remain until the end, and I apologise to other Members and the Minister for that; it is due not to impoliteness, but to pressure of timetable.
As I said in my earlier intervention, the National Society for Epilepsy is based in Chalfont St. Peter in my constituency. I immediately issue an invitation—on behalf of Graham Faulkner and everybody else, I am sure—to anybody with an interest in the issues to visit and see the great work carried out by Mr. Faulkner and his dedicated team of professionals.
The society has been called a colony in the past; it has been operating for more than 100 years and is a site dedicated to people suffering from epilepsy. It provides not only the research and assessment facilities that I referred to, but specialist residential care for those who require it.
As the Minister will appreciate, this is a Cinderella issue. The hon. Member for Calder Valley alluded to that, as did the hon. Member for Romsey (Sandra Gidley) in her intervention—[Interruption.] I apologise; I meant the intervention made by the hon. Member for Bridgend (Mrs. Moon).
Mrs. Moon: I do not speak for the Liberal Democrats.
Mrs. Gillan: I understand that; my eyesight must be worse than I thought.
I understand that there is real ignorance among not only the general public and employers, but the medical profession. That is reflected in the report. Our residential care takes place not only on the NSE site, but in supported units in the community. That is important, as people suffering from severe epilepsy can be rehabilitated and introduced into the community. That is an important part of the work.
Obviously, the research unit is state-of-the-art and works with many distinguished scientists from around the country. One particularly impressive aspect of the NSE is the monitoring suites, which have state-of-the-art facilities for observing people continuously so that if they have an epileptic fit, they are looked at in a real-time situation. That gives those involved in the diagnosis a good chance of getting to the bottom of the problem.
It has always struck me that people come to the NSE’s assessment unit, with their families, from all over the country. Those people are often confused and worried about their condition. They stay for many weeks; the assessment is long-term in some instances. When they know that the medics have got to the bottom of their condition and that they will receive the correct treatment, their relief can be seen.
The hon. Member for Calder Valley laid out the facts and figures well, and they are in the report for the Minister to look at. Is it not a crying shame that nearly 1,000 people a year die from epilepsy? More than 360 are young adults and children—what a waste of our society’s future. Some 400 of the 1,000 deaths are considered to be unavoidable.
The report addresses not only the ignorance of the condition, but the inadequacy of provision and training. It is important that a Government concerned with the health of our whole society should examine the issue of epilepsy and address the concerns raised in the report. With certain adjustments of approach, we could certainly move to better outcomes on epilepsy. Misdiagnosis, work force issues, funding, employment, the stigma and the issues of residential care are all addressed in the report, but, as the hon. Member for Stroud (Mr. Drew) mentioned prisoners, I would particularly like to take up that point. The Minister, with her colleagues in the Ministry of Justice, needs to address the treatment of prisoners who ostensibly have epilepsy. Some 62 per cent. of diagnoses of prisoners with epilepsy were not made by epilepsy specialists and, in addition, 53.8 per cent. of those prisoners diagnosed as having epilepsy had not had a medical review for 12 months.
Sandra Gidley (Romsey) (LD): Does the hon. Lady have any information about the time scale of those figures? Responsibility for prison health passed over from the Home Office to the health service and local primary care trusts two or three years ago, I understand. We might be looking at two different pictures.
Mrs. Gillan:
I must refer the hon. Lady to the report, if she has read it. I appreciate that responsibility for health passed over to the PCTs. Once again, we are seeing statistics that show that prisoners are not being
followed up for a period of 12 months, and that more than 60 per cent. of those who are taking anti-epileptic drugs require a change in those drugs while none of the prisoners who need such a change have had that opportunity or been fully informed about their condition. I urge the Minister to consider that in her Department and with the Ministry of Justice, because it could impact on the access of prisoners to suitable health care, as they cannot readily walk out and consult a doctor or a nurse.
Mr. Stephen O'Brien (Eddisbury) (Con): That point highlights another subject that was touched on by the hon. Member for Calder Valley (Chris McCafferty). So often, in the prison population in particular, those who suffer from epilepsy of whatever degree are labelled as having a mental health condition. That is often part of the missed diagnoses, let alone the misdiagnoses. I am anxious, as part of the liaison between the Department of Health and the Ministry of Justice, that there should be a much greater emphasis on considering the condition on its own merits rather than as a part of mental health, which, of course, is one of the main areas of concern within the prison population.
Mrs. Gillan: My hon. Friend is absolutely right. We have alluded to the fact that epilepsy is often associated with other complex conditions, and that is no more the case than among some of the individuals who are detained at Her Majesty’s pleasure in some of our prison establishments. I am particularly annoyed because, despite the fact that there are NICE guidelines that cover the subject, I feel from the information that was given to the all-party group that those guidelines are not being strictly implemented. I encourage the Minister to consider that.
If we want successfully to reintegrate former prisoners into our society, adequately treating and informing them, as well as allowing them access to medical services, is even more important. Those circumstances might well be linked to the pattern of offending.
I am delighted that the debate has been brought to the forefront. The area is deserted, but I hope that the Minister, whom I welcome to her role, will take a particular interest in it. If I or any of my hon. Friends can give her any help in the future to ensure that this area of our medical and community life is improved for a large number of people, I would be the first to offer that assistance.
11.33 am
Sandra Gidley (Romsey) (LD): I congratulate the hon. Member for Calder Valley (Chris McCafferty) on securing the debate. The all-party group on epilepsy’s report, which prompted the debate, is welcome because it was apparent while researching for today’s debate that there is a dearth of information about patient experience in epilepsy.
I want to pick up on the point about discrimination made by the hon. Member for Bridgend (Mrs. Moon). Unfortunately, epilepsy is one of those conditions that people often keep to themselves unless they have to tell their workmates. As Members of Parliament we are lobbied about access to all sorts of services, but I cannot recall being lobbied about access to epilepsy services on any occasion. It is clear from the report that
there are significant problems. I hope that the groups that might read the debate in Hansard will give some thought not only to how they can provide support for the patients who join them, but to how they can help those patients lobby. One thing that I have learned in this place is that the more people who lobby MPs on a particular subject, the more it is highlighted in Parliament. Sadly, that fact is probably reflected in the attendance here today.
Mr. Drew: There is a particular problem regarding the families of those who suffer from epilepsy explaining the situation to their friends. I have met the group that meets regularly in Gloucester, and it is difficult to explain what having a family member with epilepsy involves. There is a general view that we must do much more on the education front to allow those people some dignity in their lives. The patient matters, but so does their family.
Sandra Gidley: The hon. Gentleman makes a good point. I used to work with someone with epilepsy and at the outset, she said, “If I fall over, you do not put a spoon in my mouth. This is what you do.” She debunked the myths straight away, and we were not frightened of the condition and learned to cope with it. Sadly, she was the victim of an unexplained death as a result of epilepsy. Such deaths impact on families in all sorts of ways, too. The family found it difficult to cope with the unexplained death and had relatively little support and help afterwards. That was a few years ago, and I believe that more support is available now.
Mrs. Moon: I apologise because I, too, cannot stay for the whole debate. I was lobbied the week before last by a young girl of 17, whom I met at an event in my constituency and who was very distressed because she had just been diagnosed, albeit pro tem, by her GP as having epilepsy and needing to see a specialist and an MRI scan. The waiting time was hell, creating much anxiety and fear in the family. Living with that anxiety and fear and not knowing the long-term consequences often makes it difficult for people to tell others. They do not know what the consequences will be; all they know is that it feels like a huge sentence. It is difficult to articulate their fears alongside what should be done if they have a seizure.
Sandra Gidley: 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.
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