We look at seven of the biggest milestones for Epilepsy Action to mark the organisation’s 70th anniversary
This year has been unlike anything any of us ever expected. It has come with great hardships and losses for many people, and brings new challenges and uncertainty for the coming months.
But 2020 also marks a significant milestone in Epilepsy Action’s existence – its 70th anniversary. In such a strange climate, it’s hard to feel particularly celebratory, but where possible, it’s good to take stock of the positives that we have.
Over the last 70 years, the epilepsy landscape has changed a lot. In 1950, when the British Epilepsy Association (BEA) was created – later renamed Epilepsy Action – life for someone with epilepsy looked very different. Some people might remember people with epilepsy being cared for in old asylums or epilepsy colonies in the early years of the decade. They might remember a time when a marriage could be annulled because of epilepsy. This was a time when epilepsy was very poorly understood and rarely spoken about.
So, the creation of the BEA marked an important moment in history. An organisation was finally set up to influence healthcare, policy and public understanding, and be a source of support for people with epilepsy.
The ways in which epilepsy touches our lives are numerous. Aside from the frightening and frustrating seizures themselves, it can affect our lifestyles, jobs, travel, livelihood, mental health, relationships and much more. It can feel lonely to be dealing with these challenges on your own. But with organisations like Epilepsy Action, you know someone has your back. They understand what you’re going through and they work to enact change for the better.
To mark its 70th anniversary, we look at seven ways that Epilepsy Action has been instrumental in driving change for people with epilepsy over the last seven decades. .
1. From colonies to communities (1963)
Seventy years ago, and longer, the way people with epilepsy were treated and cared for was entirely different. Many myths and misconceptions underpinned a reluctance for people to disclose their condition to anyone, until a seizure was witnessed.
Children and adults could be sent to colonies, asylums or psychiatric hospitals as a treatment for their condition. But in 1959, the Mental Health Act set the framework to move from care in institutions to care in the community. The BEA shared this view and believed that colonies were not as effective in rehabilitating people with epilepsy as they should have been.
In 1963, the BEA published a report, The Adult Population of Epileptic Colonies. This identified that many people living with epilepsy were confined to colonies when they could – and should – be living in the community. The report challenged people’s thinking and helped lead to changes in practices enabling thousands of people living with epilepsy to leave asylums, psychiatric hospitals and colonies.
2. Driving change (1968)
One part of epilepsy that many people find very frustrating is losing their driving licence. It might be that you’ve been itching to get behind the wheel and enjoy the freedoms driving affords. It might be that you have come to rely on your car to get to work or to the shops. Not having this option is yet another lifestyle adjustment to add to the pile.
It goes without saying that giving up your licence when you have uncontrolled awake seizures is important for your safety and that of others. But once your seizures are under control, there is no reason why you shouldn’t be allowed to drive.
But this wasn’t always the case. Before 1968, people with epilepsy weren’t allowed to drive. Understanding the value of having the option to drive, Epilepsy Action lobbied the government for the regulations to be changed for people with controlled or sleep seizures. The campaign was a success and, for the very first time, people free from awake seizures for more than three years could apply for a driving licence. This was a huge moment for people with epilepsy.
Epilepsy Action later led another campaign to reduce the amount of time being seizure free before you can apply for your licence from three years to two. This was another success and the law was revised in 1982.
3. National helpline (1994)
To this day, one of the most invaluable resources from Epilepsy Action is its helpline. Even with today’s advancements in healthcare and public attitudes, an epilepsy diagnosis can leave any of us feeling lost, confused or lonely. Twenty-five years ago, things would have been even more so, with much less public awareness and understanding of the condition.
In 1994, Epilepsy Action launched its free national helpline. For the first time, people with epilepsy had a dedicated number they could call to speak to a specialist epilepsy advisor. Not only did this create a point of contact for people with someone who understands what they’re going through, it was a way for people to get clarity and advice on their condition. They could be pointed in the right direction and receive advice about the care they should seek and the support they could have.
People often reach out to the helpline when they are feeling at their lowest, overwhelmed or when they are in desperate situations. In 2014, Rob had his first seizure, which threatened to derail his life and career plans, and left him confused and frightened. He said: “I didn’t know what to do with myself, so I called the Epilepsy Action Helpline. It’s a phenomenal service.”
In 2016, Jo called the Epilepsy Action Helpline to speak about her son, Charlie. Charlie has epilepsy and he was going through a bad patch. His seizures had increased and Jo felt like he had lost his personality. Jo said: “I was at a bit of a low ebb, to be honest, and that’s when I contacted the Epilepsy Action Helpline. At the time when Charlie was having a lot of seizures, he was losing a lot of time. It was the day that he had three seizures in a day that I wanted some reassurance, as his mum, that I wasn’t overreacting and that I was okay to push for a little bit more medical help.”
Jo spoke to the helpline and was given encouragement and advice about asking Charlie’s specialists to review his medicine. She said: “Having changed his medication and now that his seizures are controlled, we said it was like having our Charlie back.”
The value of the Epilepsy Action Helpline is immeasurable. It is a resource reachable from the most remote corners of the country and it’s here for everyone. Its creation is a standout moment for Epilepsy Action.
Having contact with people who understand what we’re going through often makes a big difference to how we feel. As well as the helpline, Epilepsy Action’s local branches and coffee and chat groups have been a consistent help and point of contact for people with epilepsy over the years.
4. Sapphire Epilepsy Specialist Nurses (1995)
Some of us will have experienced first-hand exactly how fantastic epilepsy specialist nurses (ESNs) are. They are a part of the epilepsy specialist team and they often leave a huge impression on the people they care for. They are often a friendly face and a more accessible point of contact to answer questions and offer specialist advice. They also build a relationship with their patients and offer an incredible support to people. An ESN’s work also involves raising awareness and spreading information about epilepsy in the health service and the community.
But there is always a need for more. To mark the organisation’s 45th (or sapphire) anniversary, Epilepsy Action launched its Sapphire Nurse Scheme , which ran for several years, and funded the first Sapphire ESN place in 1995. Karen Evans was appointed in this role, working at Hull Royal Infirmary until her retirement in 2018. Since 1995, 92 nurse places for Sapphire nurses have been created around the country.
5. Disability Discrimination Act (1995)
Discrimination is a concern that comes up time and again for people with epilepsy. This is particularly relevant when it comes to getting and keeping a job. It is astounding to think that as recently as 25 years ago, a person could be openly discriminated against on the basis of epilepsy – a medical condition – with no legal consequences.
In 1994, Epilepsy Action worked hard to raise the political profile of epilepsy, supporting MP John Battle in setting up the All Party Parliamentary Group on Epilepsy. Epilepsy Action pushed to have epilepsy included within the legal definition of ‘disability’. The following year, the new Disability Discrimination Act came to be, which now also covered people with epilepsy. For the first time, it became illegal to discriminate against people with epilepsy.
Even with this in place, we still hear from people who come up against discrimination in their daily lives because of their epilepsy. The work against discrimination is not over, but this milestone in epilepsy history means that people with epilepsy have legal protection in their corner.
6. Children’s Epilepsy Surgery Service (CESS) (2012)
Epilepsy surgery has long been an option as epilepsy treatment. Historically, it might have been seen by some doctors and patients as a last resort. It’s a daunting thought and can feel like quite a drastic step. But over the years, neurosurgery has been advancing in leaps and bounds, with new research and new technology refining its use and boosting its success.
Research has shown that epilepsy surgery in suitable candidates can be successful and result in fewer seizures or seizure freedom in many people. Research also shows that the earlier epilepsy surgery is considered, the better the outcomes.
With this in mind, Epilepsy Action worked with others to urge the NHS to create the national Children’s Epilepsy Surgery Service (CESS), which came to fruition in 2012. Four specialist CESS centres were set up in England that would review children with difficult to control epilepsy. It is estimated that 340 children could benefit from epilepsy surgery each year. The creation of this service increased the number of children accessing brain surgery by 61% by 2015. Nearly two-thirds (58%) went on to be seizure free one year after their surgery. The CESS still continues to offer this life-changing treatment option to children with intractable epilepsy who could benefit.
7. Personal Independence Payment (PIP) (2017)
We all know that the experiences we have with epilepsy are incredibly varied. Some of us might be able to get control with epilepsy medicine, while others might be living with exhausting and debilitating seizures or medicine side-effects. But it seems that this knowledge is not as widespread among people without epilepsy.
So, for some of us, government benefits to support us while we seek a better treatment could be the only way we can put food on the table. And the threat of this support being reduced or taken away is incredibly stressful.
In 2017, Epilepsy Action launched a national Personal Independence Payment (PIP) welfare campaign. The organisation had identified issues with the assessment process for PIP which left people who really needed this help, without it. The assessment failed to take into consideration just how varied the effects of epilepsy could be.
Chris has epilepsy and uncontrolled seizures, which affect his ability to work and his daily life. Chris needs support with everyday activities like cooking and taking a bath, as they could put him at risk if he had a seizure. His husband Sam also changed his work in order to be able to care for Chris. When they took the PIP assessment, they found it quite straightforward, until the decision came in. Sam said: “We were shocked when Chris scored zero on everything. We were quite angry that they had failed to recognise the genuine difficulties that Chris faces.”
Chris and Sam had to go through a lengthy appeals process in order to receive the financial support they needed to ensure Chris had the care he needed and they could still put food on the table.
Epilepsy Action campaigned to highlight these problems and, as a result, the assessment process changed. For the first time since 2013, the number of people with epilepsy to be successfully awarded PIP after their initial assessment rose to nearly two-thirds (63.5%) from just over one-third (37%).
After 70 years of hard work and reaching important milestones in improving the lives of people with epilepsy, there is still more to be done. Epilepsy Action hopes that in the coming years, one of the next big issues it will help to tackle is the treatment gap, maximising seizure freedom for all. Currently, only around half (52%) of people in the UK living with epilepsy are seizure free. With the right treatment, this could be as much as two-thirds (70%). In plain terms, that’s 108,000 more people living a life free from seizures.
The organisation is intent on continuing to help optimise treatment, educate and raise awareness around epilepsy, aiming always to improve the lives of people living with epilepsy.