Epilepsy

Bob Stewart Excerpts

Tuesday 29th January 2013 Commons Chamber

[Kate Hoey]

I thank the hon. Lady for that. She, along with the hon. Member for Blackpool North and Cleveleys (Paul Maynard), who unfortunately could not be here today and who has also raised this issue as an epileptic, has shown that it is very important that the public understand that people can have epilepsy and still carry on living a normal life—if being a Member of Parliament is indeed a normal life.

[Bob Stewart (Beckenham) (Con)]

I have dealt with epileptics who have collapsed in front of me and had a fit. Does the hon. Lady think that we are doing all we can to educate our children at school on how to recognise epilepsy and, just as important, what to do with someone who is suffering a fit?

[Kate Hoey]

Although things may have improved, the position in education authorities across the country is patchy. I hope that the Minister might refer to that in his speech.

I am pleased that my hon. Friend the Member for Walsall South, who introduced a ten-minute rule Bill on this matter, is now in her place. I know that she will want to say something at some stage.

I referred to the Epilepsy Action report, and it is important that people look at it because it showed some worrying results. I am sure that the Minister will have read it. Two thirds of the clinical commissioning groups—66%—do not have or do not intend to produce a written needs assessment of the health and social care needs of people with epilepsy. Only 27% of the 113 out of 149 local authorities that replied included a section in their joint strategic needs assessment mentioning the care of people with epilepsy. Only 17% of the clinical commissioning groups have appointed a clinical lead for epilepsy and only 20% of acute trusts stated that the average waiting time for an adult with suspected epilepsy to see an epilepsy specialist consultant was two weeks or less.

Crucially, only half of the people interviewed by Epilepsy Action told the interviewer that they had seen an epilepsy specialist nurse. I cannot overestimate the importance of specialist epilepsy nurses, and I am sure that other hon. Members will agree. Specialist nurses are vital and there is still concern that there are not enough of them. In its guidance, the National Institute for Health and Clinical Excellence said that they should be an integral part of the medical team providing care to people with epilepsy, but it seems that in 2013 half of our acute trusts and primary care trusts in England still do not have that provision.

The report contains many more worrying statistics, but I shall not go through them all. All in all, however, there seems to have been no major improvement in services although I stress that, as with so many other matters, the provision is patchy, with some excellent services in some parts of the country. My local trust, Guy’s and St Thomas’, does an excellent job with the resources it has. Dr Michael Koutroumanidis leads the team and as well as running the tertiary clinic runs a first-time seizure clinic once a week. Much more could be done, however, with more resources and if greater priority were given to those services.

I have some questions for the Minister. If he has read the report, perhaps as his bedtime reading last night, he will be aware of some of them. Will he ask the Secretary of State for Health to refer the whole of epilepsy services to the National Audit Office and invite it to conduct a value-for-money inquiry? That is one of the key requests from Epilepsy Action. Way back in 2007, the all-party group estimated that the avoidable cost of providing the current poor NHS service was £189 million a year based on the NICE figures. The main reason that such money could be seen as wasted is the shocking misdiagnosis rate, which is 20% to 30%, and the poor access to specialist skills. The financial consequence is that patients receive inappropriate, costly and ineffective treatment at the expense of the NHS and the public, never mind the personal consequences of their true condition not being treated. I hope that the Minister can say that that might be a useful piece of work for the Audit Commission.

I ask the Minister to ask the NHS Commissioning Board to include outcomes indicators in the NHS framework. I hope that people can get to the bottom of what all these terminologies mean. The hon. Member for Beckenham (Bob Stewart) has previously referred to the NHS using terms that mean little to the average member of the public, but it is important that we have the statistics to address the unacceptable number of avoidable deaths and the still unacceptable rates of seizure freedom.

Another issue that I want to ask the Minister about is the revised NHS constitution, where the word “pledge” will be used. We want to give people the right to involvement in discussions about the planning of their care and the right, as opposed to a pledge, to be offered a written record of that agreement. Again, published research shows that only 14% of people with epilepsy have a care plan. All those things are important. If the current review of the NHS constitution recommends making care planning a pledge from the NHS to patients, that should be toughened up to encourage a programme of care planning and by making it a right for people.

The Minister could ensure that as a matter of urgency the chief executive of the NHS raises the lack of engagement by the clinical commissioning groups in assessing the needs of people with epilepsy. It seems that that has been ignored by many of them, or lumped together with a number of other health issues that do not necessarily cover epilepsy’s particularly special nature.

There is a whole debate to be had about children with epilepsy, and not just in relation to their school education. There is a long history of children with epilepsy not achieving their full educational potential, yet with the right support there can be huge improvements. Epilepsy can affect the child’s education either because of the underlying cause or because they might have to miss lessons or interrupt them to take medication.

--- Later in debate ---

[The Minister of State, Department of Health (Norman Lamb)]

I think I must have broken the record for the time it takes to get from Committee Room 11 to the Chamber. It took under a minute, even though I bumped into our Chief Whip on a staircase and came off worse.

I congratulate the hon. Member for Vauxhall (Kate Hoey) on securing this important debate and on setting out the issues so clearly. I also thank hon. Members for their valuable interventions, which have been helpful. Occasions such as this are valuable because they expose to public attention issues that do not get debated enough in this place. They also force Ministers to think about particular conditions and their consequences. If I do not have ready answers to all of the issues that the hon. Lady has raised, I would be very happy to write to her to ensure that everything gets a proper and full response.

By way of introduction, I join the hon. Lady in paying tribute to Epilepsy Action for its work and the excellent report it has produced. It is great that we have this opportunity to highlight the issues that it has raised. She referred to the low level of engagement at the local level. She pointed out that there is good practice in many areas, but that there are also too many places where not enough is being done. In a sense, the thing that causes frustration is also the prize: the fact that we know that if we do things better we can improve the lives of people so much. That is a great prize to be secured. Along with Epilepsy Action, the Joint Epilepsy Council, which is the overarching group, also does very important work.

I should also mention that I met representatives of Epilepsy Bereaved before Christmas to discuss sudden, unexpected death resulting from epilepsy, and I found it an incredibly useful session. I learned a lot about the extent to which, through better care, we could significantly reduce the number of people who die in such circumstances. It is, therefore, incumbent on the whole NHS to ensure that we raise the level of care to the standard of the best. If we can do that, we will make a real difference.

I was concerned to hear the hon. Lady say that mortality in epilepsy is rising. Given that we know that if we do the right things we can significantly reduce mortality, that is a real concern. Epilepsy Bereaved made the case for a national register of deaths, which I strongly supported when I met its representatives. It would be a good innovation, because we need to understand much more why things are happening and where failures have occurred.

Epilepsy is the most common serious neurological condition and it affects almost 500,000 people in the United Kingdom alone. Each year a typical GP will treat 10 people with epilepsy, diagnose one or two new cases and care for 20 people who have had seizures in the past but who are currently not in treatment.

The hon. Lady mentioned Jemma, who had spoken at the launch of the report about her experience of good primary care and about the difference that it makes to have a doctor who shows an interest and understands. When one hears stories directly from such individuals, it is so much more powerful.

I should also mention the hon. Lady’s constituent, Ashleah Skinner, who sounds like a true expert patient. The more that we can spread such understanding and allow people to self-care more effectively, the better.

[Bob Stewart]

If we know pretty accurately the number of people who are suffering from epilepsy in our country, would it be crass or wrong for the Government to write to each of those individuals to ensure that they know exactly what they can do to improve their circumstances and for what benefits they might be eligible? Perhaps that is happening already. If it is, forgive my intervention.

[Norman Lamb]

I am very grateful to my hon. Friend for that intervention. Whether it is provided by the Government or at a local level by primary care general practices, he is right to highlight the importance of much better guidance on how people can self-care. The role of expert patients can also be powerful. It can be of great value to somebody who is diagnosed with epilepsy to get guidance and support from somebody who already has the condition.

I am aware of the historical problems in this area and acknowledge that the services have not always been good enough for those living with epilepsy. Indeed, I acknowledge that the services are still not good enough in some parts of the country. There was some uncertainty, and perhaps some scepticism, over whether the coalition Government’s reforms would deliver the improvements that were so desperately sought. That was understandable, given that epilepsy has rarely found itself in the same starting position as other long-term conditions.

I am pleased to report that the Department of Health has taken a number of steps recently to improve the diagnosis and treatment of epilepsy. It will work with the NHS Commissioning Board, which takes on its full responsibilities from April, to drive further improvements for those living with the condition.