Part of Culture, Media and Sport Committee – in the House of Commons at 3:06 pm on 26th February 2015.

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Photo of Laura Sandys Laura Sandys Conservative, South Thanet 3:06 pm, 26th February 2015

Absolutely. There are some wonderful, excellent centres in constituencies around the country, including in the hon. Gentleman’s constituency, but there are too few of them and there is not enough immediate referral to tertiary care once a GP identifies that epilepsy might be at the heart of a problem. We need to ensure that there is a greater understanding at the core of our health sector so that there is more referral. To be frank, we need more specialists. There is a major problem in the referral process. Epilepsy Action says that 138,000 people have been misdiagnosed. Some people are diagnosed with epilepsy who do not have it and others do not have the right medication. It is crucial to address the huge problem with referrals to tertiary care.

Following diagnosis, the cost-effective and life-enhancing pathway is to ensure that the ongoing care fits the bill. There are straightforward National Institute for Health and Care Excellence guidelines that lay out a clear pathway. There must be access to an epilepsy nurse. It would be fantastic if more GPs had epilepsy as a specialism. There must be a wrap-around package that allows people to live their lives and take control of their chronic condition. We must ensure that we have the right level of support at every single level. I am talking about people who are still potentially going to work and living their life.

We have a serious problem with SUDEP, or sudden unexpected death in epilepsy. That is an outrage. About 1,000 people every year die in their sleep. Many of them are younger people who are just moving from youth to adult services and there is not the wrap-around care that is needed. We all know from our casework that in every instance and with any condition, moving from youth services to adult care is a problem. We are seeing serious problems with those who have night-time seizures. To be frank, although people say that that is a problem, there are examples of countries in Europe that are doing better. It is crucial that we meet those targets and ensure that we do not fall behind the standards of other European countries.

I see that Mr Deputy Speaker is looking for me to wrap up. I would like to commend three sets of people, but also to challenge them. People with epilepsy live with a difficult and unpredictable condition. I take my hat off to them and to the people who care for them. However, I want them to come out and talk about epilepsy. I ask them to please ensure that their voice is heard, because if it is not, we will not get the care that we need. The charities are important, but they need to work together more. Their voices must be unified to ensure that they are heard. I call on the Government to address the Cinderella status of epilepsy. We should be doing so much better. We have criteria and there are examples, globally, of countries that are doing better. We must give people with epilepsy a lifeline to ensure that they can live a full life, and we must put the right level of investment into research to address chronic epilepsy in the long term.