Case study: Devoted mum wants to help research into epilepsy
Read about how Patient and Public Involvement is playing its part in shaping the success of the CASTLE study.
A devoted mum has spoken ahead of Purple Day about how her son’s condition inspired her to get involved in advising south London researchers.
Beccy Pile’s son Luke was diagnosed with epilepsy at age six, and she admits the family learned how to manage his condition as they went along. She is a part of the CASTLE study advisory panel and signed up to the panel after seeing an advertisement on Twitter. The research project is being led by King’s College London and Evelina London Children’s Hospital.
The National Institute for Health Research (NIHR) CASTLE study is looking into whether drugs are the best way to treat rolandic epilepsy, which is the most common form of epilepsy in children, and if a better night’s sleep can help to reduce seizures.
The mum-of-four, who lives in St Albans, said despite his condition that Luke lives “life to the fullest” with the support of his residential care provider, Zero Three Care Homes. She said:
"Luke’s epilepsy has had a huge impact on the whole family. We literally had to learn how to support his breathing, how to give him medication and how to look after him while he was having seizures.
“We provided Luke with 24-hour care up until he was 18-years-old. He is 21 now, but when he was growing up, we were always worried, as Luke can have a seizure at any moment.
“His epilepsy has never been in control, and my son has an average of 20 to 30 seizures a month. Luke’s brothers: Josh, Finn and Zach were all taught how to look after him from a young age, as Luke can never be left on his own. The boys became a very tight unit, and they all have an unbreakable bond with their brother.”
You can also watch Beccy explain how and why she’s taken part in Patient and Public Involvement (PPI) for the CASTLE study.
Luke’s brothers, who are in a band called Princes to Kings, raised £1,000 for Epilepsy Society when they performed live in Camden last year. Beccy said that Luke is a “larger than life” character who loves to sing and watch Manchester United play alongside his dad.
She believes more research is needed into epilepsy, and has been advising researchers about the overall research process for this study.
More than 60,000 children have epilepsy in the UK, and around 87 people are diagnosed with the condition every day, according to Epilepsy Society.
Purple Day is a special event held every year to raise awareness of the condition. Every year on 26 March people join together to celebrate and highlight the problems faced by people with epilepsy, their families and carers.
There are around 60 different types of seizure and a person may have more than one type. Seizures vary depending on where in the brain they are happening. Some people remain aware throughout, while others can lose consciousness.
Beccy continued: “It is very important to raise awareness and educate people about epilepsy. People think the condition is something scary or embarrassing and they don’t know how to help someone with epilepsy who is having a seizure.
“Luke had a seizure on a train from Brighton recently, and not one person said anything or offered to help us. The whole train carriage went silent, which was a bizarre experience. We don’t want to make anyone feel embarrassed or awkward, but it is important to know how to help someone with epilepsy who is having a seizure.”
Family Engagement Officer Dr Sam Lyle said the design of the study has been an excellent example of PPI in research. She said:
“The CASTLE programme is a step forward for collaborative research acknowledging parents as experts in their children’s health. The more consumer-focussed that NHS services become, the more people are unable to ignore the people at the heart of the NHS: the patients.”
Visit the CASTLE study website for details.