Campaign calls on Jeremy Hunt to end needless epilepsy deaths
The Department of Health’s removal of two of the epilepsy performance indicators, that are used to evaluate local commissioners, has left local health decision makers in the dark about how services are performing in averting premature death in epilepsy.
Figures show that you are two to three times more likely to die prematurely if you have epilepsy, but data collected from the Office of National Statistics from 2009-2013, shows that rates of premature death vary vastly within England and create a postcode lottery: for example, someone with epilepsy is 49 per cent more likely to die prematurely in West Yorkshire than in Cheshire.
Other health conditions
New scientific evidence published in the Neurology Journal also demonstrates that people with epilepsy often have other serious health conditions which go undetected, some of which could bring about premature death. The journal highlights a need to detect and manage the other health conditions in order to reduce the risk of premature death. Epilepsy Society proposes that by understanding more about the current weaknesses in care management, care can be directed where it is needed and this will stop people dying needlessly.
The Public Accounts Committee released a critical report on 26 February 2016 stating that a shocking 32 per cent of patients with neurological conditions are being re-admitted more than five times to emergency departments in the UK before seeing a neurologist. The committee stated that neurological conditions are not a priority for the Department of Health and NHS England, and the report also highlighted the “wide variation across the country in access, outcomes and patient experience” for people with neurological conditions.
Urgent need for action
Professor Ley Sander, a leading epilepsy neurologist and medical director of Epilepsy Society comments: "Premature death is an issue not only for those directly affected but to society as a whole. Those that are often affected are young. There is an urgent need to take action to eradicate avoidable deaths. My recent Neurology paper highlights the fact that when someone is diagnosed with epilepsy, doctors should be asking themselves the question 'what else does this patient have?"
Epilepsy Society's campaign has launched an online petition for people to email their MPs, urging them to write to the Secretary of State for Health and requesting that a new National Clinical Audit be commissioned at the earliest opportunity. You can view the petition here.
Epilepsy Society’s interim chief executive, David Marshall, says, “By identifying where the people of greatest need are located, and which factors contributed to avoidable deaths, a new national clinical audit will provide a spur to tackle avoidable deaths more efficiently and eliminate regional disparities. Without this information we cannot focus effort and resources to the greatest effect”.
Nineteen-year-old Samantha Ahearn died of SUDEP (sudden unexpected death in epilepsy) just six months after her first seizure.
She had barely had time to come to terms with her diagnosis of epilepsy when she had a seizure on the stairs of her family home. Samantha died at the bottom of the stairs with her mum, Lynn McGoff beside her.
'It was only Samantha's sixth seizure and it was not as vigorous as her previous ones,' said Lynn. 'Everything seemed to just suddenly stop for her. It was as though a light bulb had switched off and she had gone. I couldn't believe she had died. I kept expecting her to start snoring as she usually did after a seizure. I was trying to reassure her.'
Bubbly and outgoing, Samantha (pictured above with with brother, Adam and sister, Alice) was a big sister with everything to live for. She had just finished her A' levels and was looking forward to studying to be a social worker at Huddersfield University.
She doted on her two-year-old sister Alice and the day Samantha died had been out to buy a present for her 16-year-old brother Adam. It was his birthday.
Samantha died in the summer of 2009 but mum Lynn says the family has still not recovered from the loss of her precious daughter. 'It is the worst thing that can happen to a parent,' she continued. 'My life is in devastation.
Finding out about SUDEP
'After Samantha died I rang her consultant and said to him "you can't just die of epilepsy." It was only then that he said "you can" and he told us about SUDEP. When I asked him why we had not been told about this before, he said that Samantha was not in the high risk category for SUDEP.
'I was appalled. Are we not proof enough that epilepsy is the risk? I know that because Samantha was diagnosed as an adult, we could not automatically be involved in her appointments, but I think as long as the person themselves is happy, as was Samantha, parents should be informed of the risks. It is us who find our children dead.'
Lynn and her family have now moved house. 'We stayed living in our home for a couple of years, but I couldn't cope with going up and down the stairs everyday where Samantha had died,' said Lynn. 'It was too much for me.
'Now I worry that the same could happen to my other two children. I was dreading Adam reaching 19 and am so relieved that he is now 22 and past the age that Samantha was when she developed epilepsy.
'My younger daughter Alice cannot accept that she will never see her big sister again.
'Sensible with her epilepsy'
'Samantha was very sensible with her epilepsy. She always took her medication. She wasn't a party animal or big drinker. She always showered rather than had a bath and did everything she could to stay safe. The day after she died she was due to go on holiday to Tenerife with friends and was making sure she had all the right medication. She was just changing from lamotrigine to levetiracetam because lamotrigine had given her hand tremors.
'Six days after Samantha died, the coroner's secretary said a post mortem showed that Samantha had not been taking her drugs and had been drinking. We knew this was untrue. It was unbearable.
'Because we were so adamant, the coroner sought a second opinion which proved that Samantha had been taking her drugs, as prescribed, and had not been drinking.
'Samantha would be 26 now. All her friends are starting to have children. They bring them round to see us which is lovely but my life is not the same without my daughter.'
Talking about epilepsy
Losing a loved one to epilepsy is rare but can happen. Not all epilepsy deaths are avoidable, though some may be. If you would like to talk to a bereavement counsellor, you can call SUDEP Action on 01235 772852. Or to talk about concerns around epilepsy and premature mortality, please call Epilepsy Society’s helpline on 01494 601 400.