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Public Health England report highlights increasing rate of deaths in people with epilepsy

19 Mar 2018

Public Health England (PHE) has found that death rates in people with epilepsy have risen by 70% between 2001 and 2014. This is compared to a 6% drop in deaths overall over that period.

In a report published in January, PHE said that people with epilepsy living in more deprived areas may be at a three times higher risk of death than people in wealthier areas. The life expectancy for people with epilepsy was also found to be eight years less than the average.

Epilepsy Action’s chief executive Philip Lee has said that these findings are “shocking” and “completely unacceptable”. The charity also criticised the healthcare system for often treating neurological conditions as an ‘afterthought’.

Mr Lee said: “The impact of health inequalities on people with epilepsy is clear. Epilepsy is the only neurological condition with a significant relationship between deprivation and mortality. It’s also hard not to conclude that the lack of priority given to epilepsy within the healthcare system has directly contributed to the increase in premature mortality rates.

“The health inequalities faced by people with epilepsy must be addressed immediately. Health services for people with epilepsy must be improved now. With the right care and support, 20% more people with epilepsy could be seizure free. Better seizure control would improve people’s lives and could ultimately reduce the likelihood of death associated with the condition. The government and commissioners must act now and give epilepsy the attention it deserves.”

Jane Hanna OBE, SUDEP Action chief executive, added: “This report confirms what our bereaved community have known for over 21 years – that there is much that can be, and needs to be done, to prevent the many needless, avoidable epilepsy deaths each year, many of which are in the young.

“Risk factors for epilepsy mortality are known, including risks linked to SUDEP (sudden unexpected death in epilepsy), which accounts for 50% of epilepsy deaths; as are the steps that can be taken to reduce them. But what is lacking is a national steer to address this issue and tackle avoidable epilepsy (and overall neurology) mortality.”

Epilepsy Action offers advice on minimising risks of injury and death for people with epilepsy. These include taking medicines exactly as prescribed, and making sure not to run out. People should speak to their epilepsy specialist or nurse about what to do if they forget to take their medicines.

Epilepsy Action also advises that people ask to be referred to an epilepsy specialist for a review at least once a year. The charity says people should speak to their doctor if they have any concerns about their epilepsy.

People are also advised to manage risks if they have active seizures. This includes being aware of risky situations, such as being at heights, in traffic, in water or near sources of heat and power. The charity explains that the risks are different depending on how a person’s seizures affect them. But steps can be taken to avoid a potentially dangerous situation. These include things like having showers instead of baths, or using a microwave rather than a gas or electric cooker when alone.

Strengthening clinical teams

Dr Rhys Thomas, honorary consultant in epilepsy at the Royal Victoria Infirmary in Newcastle, said: “These data demonstrate that more death certificates include an epilepsy diagnosis than they did in the past. Is this a consequence of a better understanding of epilepsy, better diagnosis and a willingness to include ‘epilepsy’ on the death certificate?

“We also know that epilepsy is much more prevalent in deprived areas and so it is disappointing, but unsurprising, to hear that people with epilepsy in these areas also have shorter lives. Men appear to be particularly affected, dying on average six years earlier. Does this relate to a difference in how well men and women manage to take their tablets and listen to advice from the epilepsy specialists?

“From these data we cannot be certain as to what is driving these excess of deaths – but if this is another example of a ‘postcode lottery’ for people with epilepsy then it is simply inexcusable. It appears that we should be strengthening our clinical teams in deprived areas and recruiting more epilepsy specialist nurses in particular. We need to provide adequate support for all – no matter where they live.”

The Neurological Alliance is a group of organisations working to improve the lives of people with neurological conditions. According to the Alliance, the effects of an ageing population might be adding to the increase in deaths linked to neurological diseases. But even when this is taken into account, there is still a rise – albeit a smaller one – in these types of deaths.

Joe Korner, chief executive of the Neurological Alliance, said that evidence shows that neurology has never been a priority for the NHS. He added: “We hope that this important report from PHE will be a trigger for improvements in neurological care.”

The PHE report, ‘Deaths associated with neurological conditions in England 2001 to 2014’ is available online. The findings are based on mortality statistics from people living in England who were at least 20 years old.

The Epilepsy Action website has more information on epilepsy-related deaths and safety advice. People can contact the Epilepsy Action Helpline on freephone 0808 800 5050 between 8-30am and 5:30pm Monday to Friday (international calls are not free) or email helpline@epilepsy.org.uk.

If you have been affected by an epilepsy death, contact the SUDEP Action bereavement support team on 01235 772852.

 

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Neurological Alliance calls for improvements to neurology care following 2016 patient experience survey

A 2016 survey by the Neurological Alliance has found that people’s experience of neurological services has worsened since 2014. The Neurological Alliance is a group of 80 organisations in England, including Epilepsy Action. The alliance works to improve the lives of people with neurological conditions, such as epilepsy.

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