Epilepsy

Part of Culture, Media and Sport Committee – in the House of Commons at 3:24 pm on 26th February 2015.

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Photo of Kate Hoey Kate Hoey Labour, Vauxhall 3:24 pm, 26th February 2015

Thank you, Mr Deputy Speaker. I will certainly keep to that time limit.

I welcome the debate and congratulate Laura Sandys and Mrs Gillan on making it happen. As Members will know, I had an Adjournment debate on the subject on 29 January 2013, just after the report “A Critical Time for Epilepsy in England” had come out.

The hon. Member for South Thanet covered a wide range of points, all of which I agree with her about, particularly the stigma of epilepsy. That is a crucial point, but I will not go over all of what she said. I want to use this opportunity to ask the Minister various questions. He kindly responded in detail to the Adjournment debate, when we had slightly longer than half an hour, and I thought it would be helpful to follow up on a number of the issues that were covered.

I want to ask the Minister about the progress that has been made on urgent referrals, about which I and a number of other Members have been concerned. As I understand it, referrals are in theory currently meant to take two weeks, but I have had constituents who have had to wait well over two months. I want to check what the Minister is doing to urge commissioning groups and others to speed that up, because it really makes a difference if someone is seen as quickly as possible.

Part of the problem in looking at epilepsy is the lack of understanding throughout the country. Many people do not say that they have epilepsy of one form or another, but it is amazing how many times, when it comes up in a conversation, people say, “Oh yes, my cousin”—or uncle or whoever—“has epilepsy”. There is always somebody, because the numbers are very large. Will the Minister say something about that?

As I mentioned in the previous debate, a significant number of people with epilepsy have avoidable seizures. If the correct treatment is given at an early stage, that consequence can be avoided, which prevents benefit dependency, the loss of employment or people having to give up education due to a lack of support.

Will the Minister confirm what progress his Department has made on some of the other issues that were raised in my Adjournment debate and previous debates, and by my hon. Friend Valerie Vaz when introducing her ten-minute rule Bill, which I am sure she will want to mention? There is a stigma to epilepsy, but we have to promote the positive fact that so many people with epilepsy live perfectly normal lives which we would all be proud of and happy with. Will the Minister make a commitment that the disabled freedom pass and disabled railcard will continue to be available to those with epilepsy? Will he reassure anyone who is watching that that important support will definitely be kept?

Epilepsy constitutes a disability under the Equality Act 2010, and as such, employers are required to make reasonable adjustments so that employees suffering from epilepsy can stay in work. Epileptic episodes are often triggered by work, particularly when an individual is working long hours or is otherwise under stress. However, people suffering from epilepsy are perfectly able to function at the highest levels, and in many cases can successfully medicate to reduce or entirely eliminate the occurrence of attacks. Almost three quarters of people suffering from epilepsy can be free of seizures once they find the most appropriate medication. Women of child-bearing age are restricted in the drugs that they can take, and people who first suffer from epilepsy in early adulthood often take a long time to adjust to the condition and make changes to their lifestyle.

I want to draw the Minister’s attention to the case of London Underground worker Karen Guyott, which was mentioned earlier. She is 29 years old, and she was diagnosed with epilepsy about five years ago. She has now been dismissed due to her epilepsy. Karen was one of a number of London transport staff suffering with epilepsy—I think that 16 are London Underground operational staff, and there are a further 11 working for Transport for London.

London Underground’s original response to Karen’s diagnosis was to attempt to dismiss her right away using its capability procedure. The National Union of Rail, Maritime and Transport Workers successfully fended off that attempt, and instead got London Underground to make reasonable adjustments. Now, as I said, she has been dismissed, and I think the Minister should look into that and review it.

Karen’s attendance record was exemplary, and in January this year during an episode, one of her colleagues moved her from a place of safety and left her outside a locked station supervisor’s office that was close to an escalator. Karen became disorientated and wandered towards the escalator, but her colleague realised the danger and moved her into the office. As a result of that incident, instead of providing training for Karen’s colleagues, London Underground argues that Karen’s condition is too risky for it to manage, and it is clear that it is no longer willing to accommodate her. Karen is a prominent trade union activist, but if London Underground is using epilepsy as an excuse because she is a trade union activist and it does not like her or some of the things she says, that is even more shocking.

London Underground agreed to undertake a further risk assessment that amounts to an additional requirement on Karen to which other employees without epilepsy are not subject. Since then Karen has been dismissed, but London Underground insisted that she could not work at any station that had a public highway attached to it or any escalators or stairs. Everything she did required a “zero-risk” policy—the risk had to be eliminated —and such an approach is out of step with London Underground’s usual policy.

London Underground’s equality and inclusion procedure states that employees who develop conditions during their working life must be transferred to a suitable position. As a huge public sector employer that has signed up to all legislation on equality and equal rights, London Underground should have made more effort to keep Karen employed, because with a modest amount of training that support can be provided. Given the risks that London Underground deals with regularly, a member of staff temporarily struggling to manage a relatively newly diagnosed but easily treatable condition would seem to be at the lower end of those risks.

A recent employment appeal tribunal, Dyer v. London Ambulance NHS Trust, stated that the duty to make reasonable adjustments must always be carefully considered, and that only in the rarest of cases could no reasonable adjustments be made. That affirms that even when it comes to epilepsy, the duty to make reasonable adjustments could extend to redeployment with the additional support of the Access to Work programme. A lot more must be done and London Underground must be put on report.