A debate about epilepsy took place yesterday in the House of Commons. Raising a huge array of issues on behalf of people living with the condition, many hope it will begin the process of improving care, support and awareness of the condition.
Yesterday's debate was secured by Epilepsy Action Vice President Laura Sandys MP (South Thanet), who is very open about her own epilepsy. Ms Sandys MP provided a very passionate introduction to the debate covering subjects including stigma, first aid in schools and healthcare provision.
Ms Sandys MP said "Stigma is one of the problems. Epilepsy is not trendy; it is not a fashionable condition. It is not information that people volunteer when they make a job application. I can assure Members that one does not talk about it as a set-piece at social events when describing an illness during the week. People with epilepsy frequently try to disguise it; we can see it in their eyes. I have always been very clear about it, because I believe that we should take away the stigma. We cannot normalise it, because it is not a normal condition, but we can make it something that needs to be addressed in equality with other chronic conditions."
Ms Sandys MP moved on to healthcare: "There is a major problem in the referral process. Epilepsy Action says that 138,000 people have been misdiagnosed. Some people are diagnosed with epilepsy who do not have it and others do not have the right medication. It is crucial to address the huge problem with referrals to tertiary care.
Following diagnosis, the cost-effective and life-enhancing pathway is to ensure that the ongoing care fits the bill. There are straightforward National Institute for Health and Care Excellence guidelines that lay out a clear pathway. There must be access to an epilepsy nurse. It would be fantastic if more GPs had epilepsy as a specialism. There must be a wrap-around package that allows people to live their lives and take control of their chronic condition. We must ensure that we have the right level of support at every single level. I am talking about people who are still potentially going to work and living their life."
Laura’s opening prompted several questions from other MPs. Steve Rotherham MP (Liverpool Walton) asked if people with epilepsy have adequate access to neuropsychological care. Cheryl Gillan MP (Chesham and Amersham) raised the subject of the crossover between autism and epilepsy and wondered if we really know enough about the relationship between epilepsy and other conditions.
Several MPs also raised the subject of employment. Several had been contacted by constituents to say that they had been dismissed from or denied employment based on the grounds of their epilepsy. Kate Hoey MP (Vauxhall) spoke about Karen Guyott a London Underground worker who was dismissed from her job on the grounds of her epilepsy, alledgedly stating that her condition was too high risk for them to manage. Kate Hoey MP said "Given the risks that London Underground deals with regularly, a member of staff temporarily struggling to manage a relatively newly diagnosed but easily treatable condition would seem to be at the lower end of these risks".
Teresa Pearce MP (Erith and Thamesmead, Labour) highlighted the issues surrounding women, pregnancy and epilepsy. Her speech talked about maternal deaths and called for better support for women with epilepsy before and during pregnancy. Ms Pearce spoke with particular reference to the potential impact of epilepsy medication on unborn children and the recent changes in advice concerning sodium valproate.
Psychological effects of medication
One of the most powerful speeches made during the debate came from Steven Baker MP. He raised the story of a constituent that brought home just how tragic the impact of medication side-effects can be.
His constituent, Jessica, had been taking zonisamide for her epilepsy. Despite traditionally being a bright and lively woman, her mood began to alter soon afterwards. Despite trying to arrange a medication review with Jessica's neurologist, her parents were consistently unable to contact the neurologist.
Jessica made several attempts on her life while her GP consistently tried (and failed) to discuss her treatment with her neurologist. Jessica finally saw a psychiatrist – who confirmed that Jessica was having a psychotic episode. Jessica was told to stop taking her anti-depressants medication immediately. The psychiatrist was concerned that the drug Jessica was taking was causing this psychotic side effect.
Sadly, Jessica took her own life. Clearly affected by the story, Mr Baker MP said: "At no point was it explained to Jessica or parents that Zonisamide could have this effect. Jessica's death was apparently avoidable. We need to know why it was not avoided."
Valerie Vaz MP (Walsall South, Labour), Sir David Amess MP (Southend West, Con), Steve Baker (Wycombe, Con) and Martin Horwood MP (Cheltenham, LD) also talked about epilepsy related death. Ms Vaz noted "Epilepsy now accounts for more deaths than cervical cancer and is among the top 10 causes of amenable deaths". Valerie Vaz MP and her colleagues, discussed sudden unexpected death in epilepsy (SUDEP), suicide and how in many cases, such deaths could be avoidable.
The work of Epilepsy Action was highlighted on a number of occasions. Valerie Vaz MP spoke about Epilepsy Action’s involvement with Epilepsy 12, the Royal College of Paediatrics and Child Health’s report looking at epilepsy care and resources for children.
She went on to discuss Epilepsy Action's 2014 report Epilepsy in England, the local picture which found that clinical commissioning groups (CCGs) in England were not making healthcare plans for people with epilepsy. This report was further raised by David Amess MP and by Greg Mulholland (Leeds North West, LD) who described it as a “powerful survey”. Greg Mulholland MP praised Epilepsy Action, stating that it is “an excellent organisation” and that he is proud that “this wonderful national charity is based in Yeadon, North Leeds”.
The government's response
Norman Lamb is the government’s Health Minister. He closed the debate with a summation of what we may expect to see in response to many of the issues raised. He admitted that he had been touched by stories like Jessica’s.
Mr Lamb MP said: "We must do everything to avoid tragedies of this sort happening. It's so important to raise awareness, not just among the public but clinicians."
He went on to pay tribute to the work of organisations involved in campaigning and research into epilepsy such as Epilepsy Action.
Mr Lamb, referencing the discussions around epilepsy related deaths declared "It is important to raise awareness, not only among the public but among clinicians, of the condition and how best to respond to it"
Moving on to discrimination, Mr Lamb stated that "the important point about combatting disability discrimination, including for epilepsy, cannot be overstated".
With reference to access to better medical services, Mr Lamb went on to say that "for the majority of people, their condition can be well managed… They can lead independent and healthy lives. Local commissioners are best-placed to manage services for local populations. “However, it is critical that those who require more specialised care can access the right services and treatment… The government recognises the importance of ensuring that patients with suspected epilepsy are diagnosed swiftly and accurately."
Mr Lamb acknowledge that "specialist epilepsy nurses should be a key element of both routine and specialist neurological care". He stressed the importance of individualised care, particularly in the case of women with epilepsy. He wholeheartedly agreed that women must be given all the necessary information to make informed choices about their care and their family planning. He described it as being of "critical importance".
He concluded the debate, saying: "This has been an incredibly important debate and I will do everything I can to follow them up."
Epilepsy Action chief executive Philip Lee welcoming the debate said: "I don't want this debate to be just another temporary spike in the profile of epilepsy. It needs to be the beginning of something bigger and longer lasting. It has to shine a light forward. It has to show us that there is sufficient political support and commitment to make improvements a reality.
"My hope for this parliamentary debate is that in the future we might be able to look back and see this moment as the beginning of change. MPs have the opportunity to stand up for people with epilepsy and their families. To say they have waited long enough. To insist that now is the time to start to make things better."
Overall Epilepsy Action was delighted that the debate took place. We would like to thank Laura Sandys and her fellow MPs for raising many serious issues about epilepsy. We will report further in the following weeks.