Anthea runningSaturday 26th March was Purple Day or Epilepsy Action Day. There was activity around the country and some buildings were lit up in purple. But awareness of epilepsy remains low, and I suspect awareness of epilepsy and people with learning disabilities is even lower. It was really saddening, therefore, that the week before Autistica released their report over the early deaths of people with autism. A stark finding was that autistic adults with a learning disability are 40 times more likely to die prematurely due to a neurological condition than the general population, with epilepsy the leading cause of death. Despite this there has been virtually no research to establish whether treatments used for epilepsy are safe or effective in the autistic population. The report gained a considerable level of coverage but it remains to be seen if this will result in further research. Let’s hope so.

It’s not the first time that the scandal of people with learning disabilities dying prematurely, and an epilepsy connection, has been raised. The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) reported in 2013, Forty three per cent of the people studied had epilepsy and 31% had had a seizure in the previous 5 years. The inquiry was concerned at the attribution of unexpected deaths to ‘sudden unexpected death in epilepsy’ (SUDEP) in people with a past history of epilepsy (sometimes without having had a seizure for many years) with very limited further investigations undertaken, such as blood levels for relevant anti-convulsant medication. More than half (51.5%) of the people who died with epilepsy were on at least 2 types of medication, and 5% were on between 5 and 7 medications for epilepsy alone. It is interesting that despite all this information there wasn’t a recommendation from the inquiry that was specifically about epilepsy and frustratingly we see very little action on the recommendations that were made.

There are wide regional variations in the access to epilepsy support. The Epilepsy Society has been drawing attention to data collected by the Office of National Statistics (ONS) which show clear disparities across England in epilepsy mortality rates and a significant variation between the best and worst areas. Despite this, Epilepsy Action’s 2009 report found that 60% of acute trusts and 64% of primary care trusts did not have an epilepsy specialist nurse.

We will all be supporting people with learning disabilities who have epilepsy. Many of us will have had additional training to make sure that we get it right. But people with a learning disability and epilepsy are so clearly being let down it’s a scandal. I hesitated to share my own story with you, but it shows the additional challenges that people with a learning disability and epilepsy face in an under resourced system. Just 4 days after my 50th birthday last November I experienced a tonic clonic seizure. I was in the middle of a major supermarket at the time which meant I benefited from their trained first aiders and the paramedics were called quickly. A doctor in A and E spent quite some time securing me an ‘as soon as possible’ appointment with the neurologist, this was 8 weeks after the seizure, NICE guidance says it should be 2 weeks. I discovered that without the assertiveness of the doctor it may well have been 6 months. I live in an area where we have specialist epilepsy nurses, but it will have been 5 months since the seizure before I get to my appointment, but I am lucky to have one. I am lucky in many ways, my seizures are fairly infrequent, its looking as if I may be amongst the 70% of people who can become seizure free with medication and I have been able to continue working. How much more difficult would it be if I was unable to communicate how I feel after a seizure? How would I be able to say when I needed to have a rest because a seizure may be on the way as well as how the side effects of the tablets I am taking make me feel? All through my own journey I have become more and more aware of the extreme disadvantage the people we support are experiencing.

There is a big lack of joined-up-ness when it comes to learning disability and epilepsy which is untenable. We need to add this specific concern to our campaigns and awareness raising. Those of us who are supporting people living with epilepsy need to get our day to day support right, we need to help the advocacy of people we support with healthcare workers and GPs and we need to find ways to ensure that people with epilepsy and learning disabilities do not find themselves doubly discriminated against.

This year was the first time I had been aware of purple day, I ran my usual parkrun in a purple Easter hat and in an epilepsy society shirt. I’m not sure many of the others participating would have been aware of the significance of the date. I hope that we can all make enough noise so that in future far more people are aware and that there becomes a sustained campaign to ensure there are the very best outcomes for people with a learning disability and epilepsy.

Anthea Sully
Head of Public Policy, Real Life Options