Epilepsy Services

Liz Kendall Excerpts

Tuesday 12th October 2010 Westminster Hall

[Liz Kendall (Leicester West) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Streeter. I congratulate the hon. Member for Blackpool North and Cleveleys (Paul Maynard) on securing the debate. I particularly thank him and the hon. Member for South Thanet (Laura Sandys) for their brave, personal speeches, delivered with a frankness and honesty that is not always the hallmark of politics or politicians. Just by speaking about their conditions, they will have given strength and courage to thousands of people with epilepsy throughout the country. I am grateful to them for that.

Hon. Members have powerfully set out the scale of the problem and highlighted three key issues. The first is misdiagnosis: around 150,000 people are wrongly diagnosed with epilepsy or are diagnosed with the wrong sort of epilepsy. The second is poor quality treatment: patients may not see a specialist quickly enough and, because of the problems of misdiagnosis, thousands of patients take powerful drugs that are unnecessary or do not work effectively, and they must make repeated visits to their GP or go into hospital. Thirdly, because of poor diagnosis and treatment, there are unacceptably poor outcomes for individuals with epilepsy and for society as a whole. Only half of those with epilepsy live seizure-free, when the estimate is that 70% could do so. Of the almost 1,000 deaths from epilepsy every year, approximately 400 are avoidable—that is at least one unnecessary death from epilepsy every day of the year.

The estimated financial cost of that poor-quality care includes more than £20 million a year spent on incorrect drugs, and rises to more than £130 million if unnecessary GP appointments and hospital admissions are taken into account. That does not include the far greater costs to individuals and society as a whole for the thousands of people with epilepsy who cannot play a full role in their families, at work or in the community because they do not receive the care and support they need.

Following the efforts of patients and voluntary groups, many of whom are here today, understanding of epilepsy has increased in recent years. Last year, the all-party group on epilepsy met the then Health Minister, Ann Keen, for discussions, including on the findings from Epilepsy Action’s 2009 report, “Epilepsy in England: time for change” that NICE’s 2004 guidelines on epilepsy treatment are not being properly implemented in an estimated 90% of PCTs.

At a one-day conference for NHS commissioners in January, the then Minister spoke specifically about how to improve epilepsy services. She met specialist epilepsy nurses at the National Society for Epilepsy, and wrote to strategic health authorities asking them to consider how to improve services, including by increasing the number of specialist nurses. I understand that she intended to ask the Care Quality Commission to undertake a review of epilepsy services in the NHS. My first question to the Minister here today is: what plans do his Government have to increase the number of specialist epilepsy nurses and will they ask the commission to conduct that review into epilepsy services? My experience is that the commission’s reviews can make a real difference in raising awareness of such issues.

The key question today is whether the Government’s plans for the NHS will make the improvements that epilepsy patients desperately need. The key concern that we have heard about today is the future of commissioning. Clearly, PCTs have struggled to deliver high-quality care for patients with epilepsy, as they have with many less common conditions. That is and always has been a real problem in the NHS. How can the highest possible standards of care for less common conditions be delivered in every part of the country? If there have been difficulties in ensuring sufficient knowledge and expertise in 150 PCTs, that challenge will be even greater in the 500 commissioning consortiums that the Government want to establish.

The key issue that has been raised today is whether GPs have the necessary skills, awareness and interest in epilepsy services. Some do, and there are some good, expert GPs, such as those to whom the hon. Member for South Thanet referred, but many do not have the same skills and experience, and that is of great concern to patients with epilepsy. The expertise that does exist in PCTs is in grave danger of being lost. Many PCT staff who have been involved in commissioning are, understandably, looking for other jobs outside commissioning or outside the NHS. Will the Minister explain how he will ensure that GPs have the necessary skills and experience to identify and then correctly to refer patients to specialists? How will he ensure that GP commissioning consortiums have the necessary skills and expertise to commission high-quality epilepsy services?

My hon. Friend the Member for Scunthorpe (Nic Dakin) raised an important question. How will the Minister ensure that GP commissioning consortiums work with schools, local authorities and other care services? My local authority in Leicester has worked hard to build up relationships with the PCT, but that has been thrown up in the air and it must now develop relationships with individual GPs. That is a big challenge.

I want to make it clear that GPs must be more effectively involved in shaping NHS services. They are the first port of call for patients and their decisions affect 90% of spending in the NHS. Yet many GPs do not want and do not currently have the skills necessary to take on responsibility for commissioning £80 billion of NHS services. Despite claiming that they will end top-down reorganisation in the NHS, the Government continue to insist that all GPs must take on that role, and within a short time scale, but anyone who has been involved with the Government or the NHS knows that it takes a long time to change things in the NHS. PCTs are spending a huge amount of time trying to persuade GPs to become involved and to ensure that they have the right skills and expertise. Many people are worried, rightly, about whether PCT staff who are about to lose their jobs will want to put in that time and effort and, if they do, whether that time and effort would be better spent on improving patient care.

The financial costs of the Government's reforms are also significant. They have said that they will protect NHS funding in the comprehensive spending review, but the ageing population, increases in long-term conditions, and ever more expensive drugs mean that the NHS is still facing what the King's Fund and the NHS Confederation have called the biggest financial challenge of its life. Its overall budget may be protected, but it must make savings of £15 billion to £20 billion, and it has never before achieved that. Despite the Government’s claims that management will be cut by 45%, the King’s Fund estimates that the Government’s reorganisation will cost £3 billion. Will the Minister explain why his Government believe that yet another major, structural reorganisation is the best use of time and resources in the NHS, particularly in such financially challenging times?

Ultimately, what matters to patients and the public is that they get the best health care and the best value for money. The Government have said that outcomes in the NHS will be set out in the new NHS outcomes framework, and that the new national NHS commissioning board will be held to account for delivering those outcomes. The board will also take direct responsibility for commissioning some specialist services that used to be commissioned at regional level. The board will have a budget of more than £100 billion a year, but it is unclear how it will be held to account by Ministers or Parliament, who are responsible to the public for improving the NHS.

My final questions are as follows. Will the NHS outcomes framework include outcomes for epilepsy? Will the NHS commissioning board commission specialist epilepsy services, and will it draw on the expertise that was developed at regional level to do so? Will the Minister explain how the Government will ensure that the commissioning board has the necessary expertise on epilepsy services? Will patients be involved in determining outcomes and the commissioning board’s work? How will Ministers and Parliament hold the board to account? For example, if the board fails to include outcomes for services such as epilepsy, will the Government or Parliament be able to require the board to take action, or to remove individual members or the board as a whole?

Our debate today on epilepsy services will be mirrored in relation to a huge number of other conditions. People want to know how their condition will be improved by the planned changes. I am privileged that my first debate as a shadow Health Minister has been on this important subject, and I thank all hon. Members and the patients and patient groups who have come here today.