Epilepsy

Paul Maynard Excerpts

Tuesday 29th November 2011 Westminster Hall

[Paul Maynard (Blackpool North and Cleveleys) (Con)]

It is a pleasure to serve under your chairmanship, Mr Scott. I congratulate the hon. Member for Birmingham, Selly Oak (Steve McCabe) on securing this important debate.

I am epileptic. I have nocturnal epilepsy. I have tonic-clonic seizures, which, as the hon. Gentleman explained, are the severest form of epilepsy and the form that we all associate with the condition. I am, at least for another fortnight, between the ages of 20 and 35. I am single and, for the avoidance of doubt, I should make it clear that I sleep alone. I am also male, for the avoidance of any further doubt, and it might surprise people outside this Chamber to learn that I work long hours in a stressful occupation—at least I think it is stressful. I therefore tick every box for being at risk of sudden unexpected death due to epilepsy. I go to bed every night knowing that there is an infinitesimally small chance that I might not wake up again. That is, of course, a great concern.

I realise that anyone with epilepsy has a 24 times greater chance of sudden death than the normal population. Those particularly at risk of SUDEP are 23 times more likely again to experience sudden death. That understandably preys on the mind, but what concerns me more than anything else is the fact that I did not learn of all the risks at the time of my diagnosis; I discovered them because I happened to Google my condition. I sat at my computer with a chill going over me, thinking, “My goodness, I never knew any of this could possibly occur.”

I know that that is a wider concern from meeting many people, including a constituent of mine, Avril Walker, who lost her son Christopher to SUDEP when he was aged 19. I have also met many families through Epilepsy Bereaved and Jane Hanna. They all say the same: they have a sense of anguish at the loss of a loved one, which is natural and entirely understandable, but many of them have a much greater sense of frustration that at the time of diagnosis no one explained the risks of SUDEP to them. If they had known, they could at least have sought to undertake mitigating activities to reduce their risk.

I know what those activities can involve. Before my diagnosis, when my epilepsy was not controlled, I managed to throw myself down the stairs. I woke up with my head in a fridge, a washing machine and an oven, which thankfully was not turned on. I threw myself out of bed and hit my head on my bedside cabinet, making a large gash only just above my eye. When I went to accident and emergency, I was told, “Oh, you’ve just been drinking too much.” The irony, of course, is that the treatment for my epilepsy involves the avoidance of any alcohol. That is what makes it so difficult to control: if any alcohol is used in any food that I inadvertently eat, I will have a seizure in the night.

Thankfully, I adhere to my medicine. The diagnosis is so important because there is no greater impetus to adhere to medication than the knowledge of what might happen if one does not. The most sacrosanct thing in my life is ensuring that I have my medicine. I live what is essentially a double life—I am down here half the week and up in Blackpool the other half—so it can be quite difficult to ensure that I have the little packet of pills that I usually carry around with me. If I am without them, panic ensues and I have to rush down to the Victoria walk-in centre to get an extra prescription. May I complain to the Government about its being shut in a month’s time?

[Ms Diane Abbott (Hackney North and Stoke Newington) (Lab)]

I am listening with great interest to the hon. Gentleman’s personal experience; our debates are always enhanced by such contributions. Does he think that there is any particular reason why doctors are unwilling to tell people diagnosed with epilepsy about the risk of sudden death?

[Paul Maynard]

I thank the hon. Lady for that pertinent intervention. I was intending to come to that. I think that all doctors dislike dispensing bad news. It is perhaps the least fulfilling part of the job. I am sure that some of the doctors to whom I have spoken think that the moment of diagnosis is not necessarily the appropriate moment for a detailed discussion starting, “Oh, and by the way, you’re 23 times more likely to die now, so you need to do this, this and this.” However, it underlines the importance of epilepsy specialist nurses, who can have a more structured conversation one or two weeks later, after people have got over the shock of the diagnosis.

The diagnosis is a shock. When I was diagnosed in my early 20s, I had no idea when I went to the doctor’s that morning that he would tell me that I had epilepsy. I was stunned by the news. That might not have been the most appropriate time to say, “And by the way, you’ve got all this to deal with as well.” None the less, it is vital that that structured conversation occurs at some point soon after diagnosis, because it is possible to do things to mitigate the condition, even if it is just blunting the sharp corners of one’s bedside cabinet, lowering the height of the bed or fitting a child gate above the stairs. If one knows what is likely to occur, one can at least try to mitigate it.

It also underlines the dramatic importance of adhering to medication. Many of the young people who are most susceptible live what one might call chaotic lives. They do not always pick up their medication. If they are away at university, they are not under parental control and one cannot monitor their medicinal intake precisely. If they are aware of the risks, a degree of self-discipline might be brought into play to ensure that they stick to their medication regime. I have heard time and again that sudden deaths seem to occur particularly in a university setting. That concerns me. Self-discipline is necessary as early as possible, and the diagnosis and explanation process are fundamental.

When the worst occurs—tragically, it will occur, because one can never iron out the risks entirely—a much better post-death process is needed. It is natural for the family to be shocked, particularly if they were not expecting it and had not been made aware of the risk factors. There is a lack of awareness in the coroner service and among the police. There can be nothing worse than finding one’s child’s bedroom turned into a crime scene because police are not aware of the potential for sudden death from epilepsy. All that could be much better handled with instructions from on high. The coroner service in particular needs to make a list of national charities dealing with sudden death to which families can turn for help. That would be of great assistance, because many people simply do not know where to turn.

I beg the Minister to encourage the medical profession to ensure that some medical professional has a conversation either at diagnosis, if they feel it appropriate, or within a fortnight or so, to explain the risks. That alone would make a difference, rather than a conspiracy of silence that leaves those with epilepsy to find out about it for themselves. If that conversation occurs, at least people can try to take the actions necessary to protect themselves. That would make the most difference.