Provision of Epilepsy Services

Baroness Wheeler Excerpts

Tuesday 30th November 2010 Lords Chamber

[Baroness Wheeler]

My Lords, I, too, thank my noble friend Lady Ford for initiating the debate and, like others, pay tribute to the tireless work she has undertaken on behalf of people with epilepsy, particularly as president of Epilepsy Action. We are fortunate to have present and speaking in the debate noble Lords who have made significant contributions to highlighting this issue and to campaigning to address the serious problems in health and education provision for people with epilepsy.

Previous speakers have clearly set out the context of our debate: the shocking numbers of deaths that could be avoided with improved diagnosis and care; the devastating scale and impact of misdiagnosis and mistreatment; and the huge extra care and drugs costs to the NHS that this brings—£189 million estimated by the Joint Epilepsy Council. Sixty-nine thousand more people with epilepsy could have their seizures controlled with good treatment.

The 10-Minute Rule Bill that my honourable friend Valerie Vaz, the MP for Walsall South, introduced last week called for action plans for the provision of health and education services for children and adults with epilepsy and related conditions. Her “big on action, low on cost” approach draws on the research by epilepsy charities which shows clearly how lives could be saved and care substantially improved at the same time as making short and longer-term NHS savings.

So often in healthcare we face the dilemma of affordability in making the shift from funding on crisis and acute care to prevention, but in this case the evidence for moderate investment now to effect changes which would begin to impact on the care and quality of life for people with epilepsy or those wrongly diagnosed or mistreated is overwhelming. Fifty per cent of people with epilepsy in the UK make a full contribution to society because their condition is controlled and an estimated further 20 per cent could join them with good treatment.

I endorse the timely reminder from my noble friend Lady Pitkeathley of the everyday reality facing the carers of people with epilepsy. Through my links with Elmbridge Carer Support in Surrey, I recently spoke to a carer whose wife has had epilepsy for 30 years. In terms of diagnosis, it is the familiar story we have heard during this debate: eight years of initial misdiagnosis with dramatic improvement in treatment and quality of life after referral to an epilepsy consultant specialist. She now has good-quality support from the local GP and the carer told me that he could not have helped his wife have the quality of life she has without that support.

Her condition never stabilises. Sometimes she is seizure-free for two weeks and then she can have minor or major seizures on a daily basis. This fear of when the next seizure will happen is one that many people with epilepsy live with. Her husband has been a full-time carer since 1992, when the firm he was working for closed and he no longer had a sympathetic boss to help him stay him in work and undertake his caring commitments. This is another familiar story for carers.

The carer is 64, his wife is 70; they are entirely dependent on welfare and disability benefits and, like thousands of others, they live in daily fear of the letter dropping on the mat that says their already inadequate income will be reviewed. He wants to care for his wife, but he needs support to do the best job he can.

I note that the Department of Health’s recent press release on social care personal budgets gives the example of a woman with epilepsy who uses her personal budget to pay for a seizure alert dog. I hope that, as the number of people with personal budgets increases, there will be flexibility to provide real support to people living with long-term health conditions and their carers.

We have heard that good care treatment means the development of more centres of special excellence and the employment of more epilepsy specialist neurologists, key posts under the NICE guidelines, so that assessments can be made and the type of epilepsy can be diagnosed at the earliest stage. It also means ongoing access to an adult, paediatric or learning disability epilepsy specialist nurse. The 2009 research report from Epilepsy Action on ESNs clearly demonstrates the necessity of this role. This specialist care needs to be available locally in acute services and in the community if the high rate of misdiagnosis is to be addressed, symptoms managed and controlled and appropriate advice provided. I look forward to hearing the Minister’s response to the questions from my noble friend Lady Ford about what plans she has to increase the number of epilepsy specialist nurses.

As we have heard in so many of the debates in this House on specialist areas of care—motor neurone disease, Parkinson’s, diabetes—the great concern from health organisations, charities and patients’ groups is how these key services will be commissioned in the future, under the Government’s proposals for GP commissioning. How will these huge and expensive structural changes improve the treatment of their conditions? How will 500 GP consortia obtain the specialist knowledge, skills and awareness to commission these and other key specialities when the average GP will have had experience of only a small number of people with these conditions? One recent estimate I have seen, on the basis of current statistics, was that most GPs will have seen, on average, around 10 people suffering from epilepsy.

How will the Minister ensure that GP consortia commissioners will have the necessary expertise and specialist support to commission epilepsy services? How will the NHS commissioning board ensure consistency across consortia and how will its own expertise be developed? Will epilepsy services be one of the regional commissioning roles it takes over? How are future standards of care and service to be measured? Will the NHS outcomes framework include outcomes for epilepsy?

In summary, I thank again my noble friend Lady Ford for initiating this timely debate and I look forward to the Minister’s responses to the issues and questions that have been raised.