Epilepsy

Debate between Baroness Hoey and Laura Sandys

Thursday 26th February 2015 Commons Chamber

[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.

Epilepsy

Debate between Baroness Hoey and Laura Sandys

Tuesday 29th January 2013 Commons Chamber

[Kate Hoey]

I was pleased to see just how much discussion there had been in the House of Commons on this issue, and it is crucial that we, as individual MPs, raise it more with our local authorities, health acute trusts, hospitals and GPs, as understanding is so important in this matter.

[Laura Sandys (South Thanet) (Con)]

rose—

[Kate Hoey]

I of course give way to the chair of the all-party group.

[Laura Sandys]

It is excellent that the hon. Lady was able to secure this debate, particularly in the light of the recent report. As an epileptic, I find that one of the issues we face is that although the condition affects half a million people there is a stigma around it, and that has stopped clinicians and society in general addressing the underlying issues we face. It is incredibly important that we have this sort of debate and ensure that we are more public about what epilepsy is if we are to give it the right level of attention.

[Kate Hoey]

I thank the hon. Lady for that. She, along with the hon. Member for Blackpool North and Cleveleys (Paul Maynard), who unfortunately could not be here today and who has also raised this issue as an epileptic, has shown that it is very important that the public understand that people can have epilepsy and still carry on living a normal life—if being a Member of Parliament is indeed a normal life.

--- Later in debate ---

[Kate Hoey]

That is an area that I am coming to. It is extremely important. I appreciate that the Minister responding to the debate is a Health Minister, but I know he can multi-task on some occasions.

I was disappointed to learn from another parliamentary written answer that between June 2011 and July 2012 only 20 individuals in receipt of employment and support allowance—incapacity benefit—whose reported primary medical condition was epilepsy received what is called a job outcome as part of the Work programme. There are cases in which individuals with epilepsy are unable to work, but it falls upon the Government to provide unconditional support through welfare, such as employment and support allowance.

The NICE guidelines on epilepsy make it clear that epilepsy may sometimes result in significant disability, social exclusion and stigma, which many Members have mentioned, and that people with epilepsy would commonly encounter problems in employment. According to the work capability assessment handbook, the Atos working group panel on epilepsy was clear that if a person has epilepsy which occurs less than once a month, that is unlikely to impact significantly on their ability to work. I urge that consideration is given to the effects of the disorder on each individual, rather than making such a blanket ruling.

From another parliamentary question I discovered that in February 2012, 12,510 people in England with epilepsy as their primary medical condition claimed ESA, which equated to approximately 30 people in my constituency, and during the same period 32,090 people in England with epilepsy claimed either incapacity benefit or severe disability allowance, which equates to 70 people in my constituency. Finally, during the same period, 59,070 people in England with epilepsy claimed disability living allowance, which equates to approximately 100 in my constituency. There is concern that such figures are not always based on knowledge of the person and of epilepsy.

There are obviously cases where an individual who may drive as part of his job, for example, subsequently has a seizure. Under current Driver and Vehicle Licensing Agency regulations that person would be prohibited from driving for 10 years without medication. That sometimes means that he would lose his job and end up on benefit. The whole employment and support allowance system is insufficiently sympathetic in such scenarios and ends up worrying the individual with numerous mandatory schemes, sanctions and loss of benefits. It is one of the flaws in the system that needs to be dealt with to show that people are taken seriously and treated as individuals.

[Laura Sandys]

I welcome this debate, because the hon. Lady is covering a very wide spectrum of issues. She said at the beginning that a third of people with epilepsy do not have the right treatment, are not on the right medicine or have not seen the right specialist, and that is the Minister’s responsibility. Some of the other problems she mentioned, such as seizures at work and people not being on ESA or DLA, might become less prevalent if, right at the beginning of the process, we make sure that people get the right diagnosis and see the right people at the right time.

[Kate Hoey]

The hon. Lady is absolutely right. The earlier the true diagnosis is made and the person is referred to a specialist, the sooner they are seen as having an illness that can be treated and have the chance of a positive future. I am sure that everybody in the Department of Health feels like this. However, something more needs to be done at the local level among clinical groups and PCTs, and even GPs, to create this sense of understanding. The hon. Lady heard the very moving testimony from Jemma, who spoke at the launch about the difference between having a good doctor who understands and gets someone the right referral immediately and another doctor who perhaps does not understand and does not take the time to do so.

The hon. Member for Meon Valley (George Hollingbery) asked me to mention that he has a constituent who has very mild epilepsy but has not lost their job because the company they work for, Hambleside Merchandise, a business in Meon Valley, has been understanding about the situation. It is keen for the Government to change the law so that it complies with the European Union change on whether people with mild epilepsy can drive again. It was confirmed in a ministerial answer last year that these changes would happen. I ask the Minister to follow up on that to see what can happen and how quickly.

Someone in London who cannot drive because of their epilepsy may be eligible for the disabled person’s freedom pass. The Epilepsy Society, backed by other disability organisations, is campaigning for the Government to make changes to the pass in London and to the disabled person’s bus pass offered by the national Department for Transport under the English national concessionary travel scheme. In particular, the organisations call for the pass to include travel during peak hours, which is very important if someone is trying to keep a job. In some cases, a free companion pass may be necessary, as is already possible in Scotland and in Wales. If the hon. Member for Strangford (Jim Shannon) were still in his place, I would ask him whether that also applies to Northern Ireland. The Epilepsy Society also says that regional variations are confusing. People move around and it would be much better if there were an overall, agreed way of doing it.

All this comes back to a lack of awareness about information on many of these schemes. There is a lot of help and support around, but people need to be very savvy or to have a very savvy parent, or to have a link into one of the organisations that provide support, to find out all the information. Government cannot do everything, but there may be ways in which they can ensure that local authorities and others with responsibility do a little bit more. For example, people with epilepsy who get continuous anti-convulsive therapy may be eligible for the NHS medical exemption certificate. They have to fill in a form at their GP surgery to get this, and it allows them to get free prescriptions for five years. One would think that anybody in this position would automatically know about that, but it is amazing how many people do not. Perhaps GPs do not always think that they have to tell people about these things. Where it is useful to do so, we can continually raise these issues in a cross-party way within Parliament regarding our own areas.

I will conclude by thanking all the agencies and campaign groups involved for helping people with epilepsy and their carers, who do so much to help their relatives or friends. I also pay tribute to the Joint Epilepsy Council, which continues to provide information and guidance for those affected by epilepsy. Finally, before the Minister responds, I pay tribute to our own all-party group on epilepsy for the valuable work that it has undertaken over the years.