Part of Culture, Media and Sport Committee – in the House of Commons at 4:35 pm on 26th February 2015.

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Photo of Martin Horwood Martin Horwood Liberal Democrat, Cheltenham 4:35 pm, 26th February 2015

I commend the hon. Members who secured this debate, and the Backbench Business Committee for bringing this very serious issue to our attention. I have found the debate genuinely shocking.

The statistics are shocking enough: 600,000 people in this country have epilepsy. That puts it on the same scale as dementia and Alzheimer’s disease, but it receives far less attention, perhaps because we feel that we are used to epilepsy and it is not that serious. Another shocking statistic is that 1,000 people a year die of epilepsy-related deaths, and most shockingly of all—this was mentioned by Valerie Vaz—42% of those deaths are preventable, in many cases with little more than good communication.

The debate is all the more shocking and upsetting for me because of the case of Emily Sumaria. Emily went to my junior school in Cheltenham, and attended the secondary school of Mrs Gillan, Cheltenham Ladies college. From there, she did work experience in Parliament with me for several weeks. I remember her as a brilliant young woman who had the kind of smile that lights up a room. Her mum, Rachel, describes her as

“a bright, beautiful and funny girl with her whole life ahead of her. Her epilepsy was totally under control and she lived a perfectly normal life.”

Indeed, I had no idea she was epileptic. She went on to get four good A-levels and then started at Leeds university, but she never graduated.

On 4 December 2012, Emily was found dead in her bed by her university housemates. Her mum says:

“Neither she nor I were ever told about the possibility of dying and had never heard of SUDEP”— sudden unexpected death in epilepsy. The explanation was tragically simple: Emily’s university GP practice prescribed the wrong dosage of her medication when she moved from her home GP, which meant that when she missed one day of her tablets, she did not have enough in her bloodstream to prevent her from having a seizure. That one and only seizure, after almost two years, killed her. Rachel says:

“Knowledge is power and maybe if Emily or I had known about SUDEP then we could have taken additional steps to minimise her risk. This totally avoidable death has had devastating effects on a huge number of people. The ripple effect of Emily’s death has been enormous.”

SUDEP Action, the charity which looks into sudden unexpected death in epilepsy, states that being

“open and honest with patients about their level of risk, allows them to make educated choices as to their ongoing care and management”,

but that GPs in primary care lack confidence with epilepsy, and that even specialist services “do not routinely discuss” with patients the level of risk and much more serious risks of which some of them may not be aware. One of the families who contacted SUDEP Action said:

“There is nothing worse than losing a child but to feel that [our son] did not have all the information he needed to make informed decisions makes it especially cruel.”

There is also an issue about information for bereaved families after death has, tragically, occurred. NICE guidelines state:

“Where families and/or carers have been affected by SUDEP, healthcare professionals should contact families and/or carers to offer their condolences, invite them to discuss the death, and offer referral to bereavement counselling and a SUDEP support group.”

Yet SUDEP Action says that that is not happening. It is aware of many people bereaved by epilepsy who find no specialist support and who are often left struggling to understand what has happened to them and why.

In 2013, SUDEP Action launched—with, I am pleased to say, Government support—the epilepsy deaths register. It is not only an amazing research resource, but of enormous value to families, which the Government should be congratulated on supporting. It offers a means for bereaved families to express what has happened to them. SUDEP Action says:

“The bereaved families are robbed of the chance of saying goodbye; of saying the things that they always wanted to, and didn’t. They are robbed of opportunities, future hopes and dreams.”

The register is therefore an important outlet for the families:

“It is somewhere to leave their story; a way to feel that the information they give will be used for the benefit of others for years to come. The impact of these deaths is not yet fully understood, but in our experience is captured by one of the families reporting to SUDEP Action’s Epilepsy Deaths Register: ‘The physical pain and guilt are overwhelming, and we are only just becoming able to talk about him to each other after 16 months has passed. The impact is total and devastating, and has affected both the physical and mental health of the whole family.’”

SUDEP Action and families such as Emily’s are calling for better information. That means better information at primary care level. I know that this is a constant theme with GPs and that they cannot be experts in everything, but it is particularly important in the case of epilepsy because people do not understand the potential seriousness of the condition. There must also be better communication about risk that is communicated properly by specialist services and better information after death for bereaved families.

We as policy makers have little power to offer much comfort to families such as Emily’s, but if we can take action that saves even one more life from sudden unexpected death in epilepsy, it would matter a great deal to Emily’s family and friends, among whom I feel proud to have briefly counted myself.