Epilepsy

Part of Culture, Media and Sport Committee – in the House of Commons at 4:09 pm on 26th February 2015.

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Photo of Greg Mulholland Greg Mulholland Liberal Democrat, Leeds North West 4:09 pm, 26th February 2015

I start by congratulating my hon. Friend Laura Sandys and my right hon. Friend Mrs Gillan on securing this important debate and giving us all the opportunity to contribute on behalf of our constituents. I particularly thank my hon. Friend for bringing her experience and for what she has done during her time here, and I echo the sentiment that it is a shame she will not be coming back to carry that on. Other people will have to do that, and I am sure right hon. and hon. Members will do that here.

It is important to start by saying that my right hon. Friend the Minister of State, Department of Health has taken a real interest in epilepsy and that he and his colleagues have introduced significant improvements in this Parliament. Equally, the NHS Commissioning Board’s decision to introduce a national clinical director for neurological conditions, Dr David Bateman, has been positive in ensuring that epilepsy is on the agenda at the most senior level in the NHS.

In February 2013 we saw the publication of the NICE new quality standards for children and adults with epilepsy. I also welcome cross-departmental working, and the fact that the Department for Education is looking at better support for pupils in school diagnosed with epilepsy. There is still a lot to do, and still too much of a sense that care is good in some areas and poor in others; that has to be a priority for the next Government.

I am proud that Epilepsy Action, an excellent organisation, is based in Leeds. Its headquarters are in Yeadon, an area that I represent. The office is about

100 yards over the border in the constituency of my hon. Friend Stuart Andrew. We share Yeadon, but we are both proud that this wonderful national charity is based in Yeadon in north Leeds. I will not repeat the findings of its powerful survey, except to reiterate one figure. Of the clinical commissioning groups that responded, 70% said that they had not produced and had no plans to develop a written needs assessment of the health and social care needs for epilepsy. That is simply not good enough and it has to change, and quickly. I urge my hon. Friend the Minister in the time that he has remaining to make it clear that that is not acceptable and must change.

Every health and wellbeing board must know how many people in their area have epilepsy and develop an epilepsy section for their joint strategic needs assessment, and that should include information about current local provision and services and future needs. Health and wellbeing boards must also work with their local CCGs to ensure that adults and children in their area experience a joined-up approach to their epilepsy health care needs. Every local authority scrutiny board with responsibility for health must consider whether their JSNA adequately meets the needs of adults and children with epilepsy in their local area.

I am delighted to tell my right hon. Friend the Minister that the Leeds Teaching Hospitals NHS trust—this is not me saying it, but my constituents and practitioners tell me—is one of the best trusts in the country for supporting those who have epilepsy. We are proud of that. The trust has a team providing specialist epilepsy care and advice for people in Leeds and the wider Yorkshire region, and as well as the medical treatment of epilepsy it runs an epilepsy surgery pathway for people with difficult-to-treat epilepsy. It has specialist brain tumour and vagal nerve stimulation clinics. I hope that my right hon. Friend will join me in recognising that Leeds is a centre of excellence for epilepsy. If, in the remaining five weeks while he is definitely in this particular job he has the time to come and visit to meet some of the people involved, I would find time in my diary to join him.

Like many other Members, I have learned from my constituents about epilepsy. My constituent Dominic Ware and his parents Vic and Carol have given me their permission to pass on some of what I have learned from them. My constituent Andy Cavadino also has epilepsy. They have enabled me to see both the good and the issues that need dealing with.

Andy Cavadino’s epilepsy developed over 10 years after a serious head injury. The two main issues affecting him relate to driving and to medication. As a teacher, he finds it frustrating that he is allowed to drive a people carrier but not a minibus. He wants there to be a much more transparent discussion about what vehicles can and should be driven by people with epilepsy. The second issue that he raises has already been covered by other hon. Members. People have an attitude to those with epilepsy; they are often nervous and on edge around people with epilepsy. As Andy told me, people sometimes say, “Take it easy.” We need to raise awareness that people with epilepsy are generally on medication, if they need to be, and that that is helpful. We must do more to fight the sense of concern, paranoia and stigma that is attached to people such as Andy.

Dominic Ware’s epilepsy has been a huge part of his life and that of his parents, Vic and Carol. It is something that they have to cope with. The care that Dominic has received in Leeds has saved his life and now enables him to lead a normal life, which is precisely what needs to happen. However, they and especially Vic, who is a passionate campaigner, know that for too many people, that is not the case. During the debate, we have heard of people who, unlike Dominic, have been failed, often with devastating effects, and that is simply not acceptable. Will my right hon. Friend the Minister support Vic’s call that whoever forms the next Government should appoint an epilepsy champion in the Department of Health to bring things together so that there is a single, strong voice in government to push the issue forward?