Epilepsy

Laura Sandys Excerpts

Thursday 26th February 2015 Commons Chamber

[Laura Sandys (South Thanet) (Con)]

I beg to move,

That this House has considered epilepsy.

I would like to start by thanking the Backbench Business Committee for allowing my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), who has done so much to support and advocate on behalf of people with epilepsy, and me the opportunity to have this debate. It is a great honour to be able to open this debate in the presence of so many fellow members of the all-party group on epilepsy, who over the past five years have worked together to ensure that we raise epilepsy issues with all the relevant Departments. However, I personally feel that I might not have done enough. There is still so much more to do to ensure that epilepsy has its rightful place in health and social care and that it is seen as a chronic condition that needs greater attention, greater support and—this is very close to my heart—much less stigmatisation.

[Mr Mark Prisk (Hertford and Stortford) (Con)]

I am grateful to my hon. Friend for giving way and sorry to interrupt quite so early in her speech. I strongly support her and my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) in securing this debate. Like my right hon. Friend, I am blessed by having a national epilepsy centre in my constituency, but I still have constituents who worry about stigma. In particular, Rachel Dawes and Susan Gayler feel that even now, despite having a national centre of excellence locally, the issue of stigma is important? Does my hon. Friend agree?

[Laura Sandys]

I most certainly do. Addressing stigma is at the heart of the treatment, care and, frankly, funding for epilepsy. Too often it is swept under the carpet. For example, statistically there should be many more Members of Parliament who have declared themselves as having epilepsy. That is because of the stigma and the overall environment for people like me—I am a sufferer, as is my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard)—so no doubt there are more Members of Parliament who have epilepsy.

[Sir Bob Russell (Colchester) (LD)]

Part of the training for first-aiders is how to deal with epilepsy. Does my hon. Friend agree that if first aid were part of the school curriculum, more people would be able to deal with such situations?

[Laura Sandys]

I know that first aid in schools is an issue that the hon. Gentleman is very passionate about. I absolutely do agree. This condition impacts one in every 100 people; it is a very large-scale chronic condition. When a child falls to the floor in school, they need people who are confident to deal with them—who know what the issues are, can calm the rest of the classroom, and understand that this can be managed and supported. If people in authority do not know how to respond—we have examples among the police, those in schools, and even nurses—they feed the stigma, feed the problem, and feed the anxiety around people with this condition.

I feel that we have not done enough to push for greater change and greater focus, and to ensure that Government and the charities have greater ambition for people with epilepsy. However, I think we have done a reasonable amount, and I hope that over time we will do much more in this place and outside.

Stigma is one of the problems. Epilepsy is not trendy; it is not a fashionable condition. It is not information that people volunteer when they make a job application. I can assure Members that one does not talk about it as a set-piece at social events when describing an illness during the week. People with epilepsy frequently try to disguise it; we can see it in their eyes. I have always been very clear about it, because I believe that we should take away the stigma. We cannot normalise it, because it is not a normal condition, but we can make it something that needs to be addressed in equality with other chronic conditions.

[Kate Hoey (Vauxhall) (Lab)]

Does the hon. Lady think it shocking that in this day and age a very large public body like Transport for London—London Underground —could sack a young woman for the fact that she has epilepsy? Does she agree that we cannot allow this to happen?

[Laura Sandys]

I very much welcome that intervention. I was going to mention that case, which is extraordinary for two reasons. First, why would the young woman lose her job? She already had the job and was succeeding in it, so why was the sudden revelation of her epilepsy a reason for losing it? Secondly, her manager said that it had absolutely no impact on her ability to perform her role.

This is, in many ways, a 19th-century attitude. It is the expectation that when one tells somebody that one is epileptic, they expect one to be dropping to the floor foaming at the mouth. Many in this Chamber may not know that until the 1970s I, as an epileptic, would not have been allowed to marry—although I am sure that many did because they did not declare that they had epilepsy. That is the sort of stigma that we were dealing with not so long ago. It is a Dickensian, 19th-century perspective. I believe, fundamentally, that that lies a little at the heart of why, for a chronic condition that impacts one in 100 people—more than many other conditions—epilepsy does not get the right level of attention. This is an important task for us here in the Chamber and for the all-party group on epilepsy, and for me to continue outside this place. Many other conditions have overcome embarrassment and stigmatisation. It is absolutely crucial that we start to address this through our public services, our schools and education system, and our hospitals and GPs.

It is important that those of us with epilepsy are much more vocal. I hope that the Serjeant at Arms will not come and arrest me, but my hon. Friend the Member for Blackpool North and Cleveleys and I have actually broken the rules of the House. We did not exactly sneak up Big Ben, but we broke the very clear rules saying that anyone with epilepsy is not allowed to go and look at it. We thought, “You try and catch us!” We broke the rules of the House, and went up to the top. We have used that as a platform for saying that we should both contest it when epilepsy is not supported effectively enough, and challenge people who do not understand epilepsy enough and are fearful of those who have it. We think it took 150 years for somebody with epilepsy to go up Big Ben, and we are trying to identify other rules that we can break, so if hon. Members hear that my hon. Friend and I have got into trouble, they will know what it is all about.

Epilepsy has a very wide range of symptoms. I am very lucky to have very mild epilepsy. It is controlled and I am on medication, so there is no issue and I am very unlikely to have a seizure. However, it is incumbent on people such as me to be a voice for people who are suffering, and who may have a seizure every 10 to 15 minutes. I know that my right hon. Friend the Member for Chesham and Amersham, like Young Epilepsy and Epilepsy Research, very much focuses on people with chronic epilepsy. Such people do not necessarily have a voice, and it is for us to make their voice heard.

The issue that has arisen in relation to the lady from London Underground is not the only example. Several people have e-mailed their Member of Parliament and asked me to raise their concerns. A young woman with a masters degree cannot find a job because employers say that she has declared she has epilepsy and they are concerned that she may become a problem for the company. That has now happened 12 times, but it must not continue. We must ensure that employers, the police and hospitals—even in a hospital, someone having a seizure has been accused of being drunk and disorderly—understand people with epilepsy and recognise their condition for what it is.

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

May I congratulate my hon. Friend on leading the charge in getting this debate? She will be very sadly missed in this place, where she has made a tremendous contribution. Does she agree that it is very important to understand more about the condition of epilepsy? Another area in which I take a great interest is autism, and it is estimated that 46% of children with autism also have seizures. Does she agree that we do not yet know enough about the relationship between epilepsy and other conditions, such as autism, to enable us to succeed on behalf of such people?

[Laura Sandys]

Absolutely. I totally agree. In many instances, people with epilepsy also have other chronic conditions, which are no doubt contributory factors. The level of support for research on epilepsy is significantly lower than for other conditions. Again, it is seen as a secondary or tertiary priority when it comes to research funds. It is absolutely crucial to understand the interrelationship between epilepsy and autism, as well as between epilepsy and school achievement and all sorts of not only chronic conditions but life-restricting—as well as life-enhancing—problems. I believe that we need a lot more research, but this comes down to people being clear that epilepsy matters.

[Steve Rotheram (Liverpool, Walton) (Lab)]

On that point, I have had correspondence with a hospital in my constituency called the Walton neuro centre. It says that neuropsychological care is very important, especially for younger people who, if they have access early enough, have the propensity to go on and achieve their full potential. Does the hon. Lady agree that Ministers should consider what more they can do on access to such neuropsychological assessment and care, and in supporting the work of the Walton neuro centre?

[Laura Sandys]

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.

[Several hon. Members]

rose—

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[Steve Baker]

I am a layman, but one of the things I have learned today is that one cannot simply cease taking medication for epilepsy, so specialist advice is required.

[Laura Sandys]

indicated assent.

[Steve Baker]

I am grateful to my hon. Friend for acknowledging that. Put simply, it seems that the epilepsy medication, which was necessary, caused psychotic side effects, which were exacerbated by anti-depressants that were prescribed with the best intentions. Jessica therefore spiralled into the situation that tragically led to her death.

I would like to finish with a few words from Jessica’s parents, who have written to me:

“The sudden and tragic death of our otherwise healthy and happy teenage daughter has caused devastation throughout our family and local community. We strongly feel that this situation could have been avoided if we were given the correct advice and prompt treatment and are committed to ensuring the same mistake does not happen to another epilepsy patient.”

Susan and Steven Monks have been robbed of their daughter and of all the future opportunities, hopes and dreams for which she stood. They deserve to know why and what will be done about it.

[Valerie Vaz (Walsall South) (Lab)]

It is a pleasure to follow the hon. Member for Wycombe (Steve Baker). I am sure I speak on behalf of all hon. Members in asking him to pass on the sympathy of the House to his constituents, whose case he has so ably put forward.

I start by paying tribute to the hon. Member for South Thanet (Laura Sandys) for her work as chair of the all-party parliamentary group on epilepsy, and for fulfilling her final task of securing this debate before leaving the House. She will be sadly missed; we shall also miss her enthusiasm and her commitment to epilepsy and to her constituents, for whom she has been an assiduous MP.

[Laura Sandys]

I am absolutely thrilled that the all-party group’s chairmanship has been handed to my hon. Friend the Member for Walsall South (Valerie Vaz), who I know will put a huge amount of passion and energy into continuing the fight and ensuring that the voice of those with epilepsy is very much heard.

[Valerie Vaz]

I am grateful to the hon. Lady. I hope to be as good as her, but I am not sure that I will be.

This is a timely debate, in that it comes between two important dates. The World Health Organisation adopted a resolution on 2 February this year, and world epilepsy day is on 26 March, when we are all urged to “colour it purple”. It is just an accident that I happen to be wearing purple today. This debate is taking place 12 days after 14 February, and most people probably know that St Valentine is the patron saint of epilepsy. The WHO launched a campaign on 9 February to improve the epilepsy treatment gap and it urged member states to look into the matter. It set out a number of clauses, and I shall mention just a few of them. Member states were urged: to ensure public awareness of and education about epilepsy; to integrate epilepsy management; and to introduce and implement national health care plans of action for epilepsy management. There are many more clauses and I urge hon. Members to look at them. A number of excellent reports have been published recently and I will touch on those in a moment.

I want to deal with three different stages of services: those for young people; the transition from young person to adult; and adult services. Here are some background facts. The brain is the most complex organ in the body with more than 100 billion neurones passing messages around it. The vast majority of the brain’s activities are subconscious. Epilepsy is a life-threatening neurological condition that can affect anybody at any age without warning. There are 40 different types of epilepsy and at least 40 different types of seizure, and 87 people are diagnosed with the condition every day. Epilepsy now accounts for more deaths than cervical cancer and is among the top 10 causes of amenable deaths.

I want to turn first to young people. The report “Improving epilepsy care for children and young people”, published by Young Epilepsy, University college London and Whittington Health highlighted unacceptable levels of misdiagnosis, inadequate communication, a variation in care and a fragmentation of services. There are 112,000 children and young people who have epilepsy, which is one in every 200. The report made seven recommendations. They include creating an individual plan for every child and young person—as one parent has said, a one-size-fits-all approach is wrong; designing a year-of-care tariff for epilepsies; and creating an audit and annual review of relevant outcomes for each child and young person. Dr Amit Bali, who was involved in producing the report, has said that only small steps have been taken in areas that require big leaps forward.

I was at the launch of Epilepsy12 at the Royal College of Paediatrics and Child Health a few years ago. A number of charities were also involved in that, including Epilepsy Action and Young Epilepsy. Epilepsy12’s report revealed variations in the level of care and available resources such as the specialist nurses and clinics that are needed to provide care across the United Kingdom. Amazingly, it also found that some services were not even meeting NICE guidelines. In a later report, published in 2014, Epilepsy12 said that some progress had been made, and that two thirds of units had specialised epilepsy nurses and more clinics were being held. However, only two in every three units reported holding a weekly epilepsy clinic just for children and young people.

The way in which young people are treated is important because it affects their education as well as their lifestyle. A three-year population-based study by Children with Epilepsy in Sussex Schools—CHESS—found that 95% of the children affected had difficulty in at least one of the assessed areas and that most of the children had several problems. The CHESS study found that 60% of the children met the diagnostic criteria for at least one behaviour or motor disorder, but only one third had previously been diagnosed. We have heard about the difficulties that children on anti-epileptic drugs have. A study by the Epilepsy Society showed that AED drugs have a detrimental impact on processing speed and memory work.

On the transition period, Epilepsy12 found that there were inadequate services and transition arrangements for young people. So more attention needs to be given to handover clinics, which could comprise both adult and paediatric health professionals. The loss of the continuity of care at transition needs to be addressed to ensure that new relationships with the clinicians are established.

Let me now discuss adults. The report by Epilepsy Action on clinical commissioning groups and commissioning in November 2014 found that only three out of 140 health and wellbeing boards are making plans for people with epilepsy. Some 78% of CCGs have not developed and do not intend to develop a written needs assessment for people with epilepsy—that must change. Evidence also shows that people with epilepsy have poor access to epilepsy specialists and epilepsy specialist nurses, and do not have regular reviews of their epilepsy. My hon. Friend the Member for Vauxhall (Kate Hoey) was kind enough to mention my ten-minute rule Bill, in which I called for direct referrals to a tertiary specialist. That has not been taken up yet, so we need to have referrals from a GP specialist to a tertiary specialist without the need to go through a generalist consultant.

The sudden unexpected death in epilepsy is an important issue, as was highlighted by SUDEP Action. The national sentinel audit of epilepsy deaths in 2002 found that 42% of such deaths were potentially avoidable. Brain surgery is another area where there is a lack of availability, with only 300 operations being carried out on adults each year. It is estimated that approximately 5,000 adults could and should benefit from the only cure there is for their epilepsy. I also wish to add my voice to those of other hon. Members on the outrage at the sacking of the young person at London Underground.

But there is hope for the future. The Epilepsy Society is undertaking active research. Its report highlighted a number of firsts, such as the first brain and tissue bank for epilepsy. It has created the first multilingual digital information resources for epilepsy, and it hopes to unravel the genetic architecture of the epilepsies and bring new hope for people with the condition. We should consider ourselves lucky in this country, because not only do we have committed practitioners who are desperate to help their patients, but we have areas where pioneering work is going on, such as that being done by Professor Cross, who has pioneered the ketogenic diet. In the US, until there was “Obamacare” those with epilepsy could not be covered by insurance because they had a pre-existing condition. We take all that for granted, which is why this debate fulfils the important role of highlighting awareness of this condition.

Hon. Members will remember the drama “The Promise”, where the lead character, Erin, not only was a heroine, but had epilepsy, which was incidental to her life: Its writer, Peter Kosminsky, lately the director of “Wolf Hall”, said that he wanted to show someone being brave and getting on with her life without letting her epilepsy circumscribe her actions, in the hope of de-stigmatising the condition. On de-stigmatising, let us also not forget the roll call of creative successful people who have or have had the condition: musicians Neil Young and Prince; and the writers Dostoevsky; Charles Dickens and Lord Byron. I hope we have today brought epilepsy out of the shadows of stigma and discrimination, and into the spotlight of knowledge, awareness and hope for the future.

--- Later in debate ---

[Laura Sandys]

I want to thank everybody here and to ask the Minister to do something for everybody, not least the two young ladies we have heard about today. Their legacy is worth his doing three things.

The first is to talk to NHS England and work out a pathway to reduce by 400 the unnecessary deaths caused by SUDEP each year. The second is to kick and beat the more than 90% of CCGs that do not have a pathway. That is not acceptable; it is absolutely letting down many people throughout the country. The third is to determine how best to implement the NICE guidelines and ensure that the pathway of long-term chronic care—