Visiting The Meath For The First Time
James was born in Spring 2001 and has lived at The Meath since January 2025. He grew up in West London with his parents Angela and Mark, his older sister, Ella and younger brother, Hugo. Angela caught up with us to share her experience. She explained how she and her family have navigated the uncertain pathway of securing the right support for James.
Now settled in at The Meath, Angela is pleased that James is his usual inquisitive, sociable and fun-loving self. He enjoys a variety of Skills Centre sessions and especially likes the gym and being a member of The Meath Choir. Angela recalled
“When we were waiting for a place at The Meath, James and our family were invited to a summer drinks party on the front lawn. The Meath Choir performed and James was drawn to them. He joined in with singing and signing! He loves singing and I could tell he wanted to be a part of it all.”
James is hugely resilient. While he is full of energy and enthusiasm on good days, his epilepsy means that he regularly has days when he cannot take part in the things that he loves. On these days, he simply must rest and recover from the exertion, pain and sometimes injury caused by seizures.
From Surviving to Thriving
James experienced his first seizure at just 6 months old. As an infant he would regularly experience seizures throughout the day and night, with some seizures lasting well over 30 mins.
Despite experiencing severe and frequent seizures as a baby and young child, James was showing lots of promise of the fun loving and curious young man he has become.
Initially, he attended a mainstream Primary School. During this time at around 7 years old, James was finally diagnosed with Dravet Syndrome. Sadly, when James was a baby and had been admitted to hospital several times for his seizures, the usual emergency medications administered for seizures, are now known to have likely exacerbated the symptoms of Dravet Syndrome, making seizures worse.
Angela and Mark spent a long period of time fighting to secure the right educational support for James, and he was eventually issued with his Educational Statement (now an EHCP) aged 11. Finally, this enabled him to receive the additional support for his learning disabilities that he needed.
When James needed to attend his secondary school, it was clear that he would need a school which could cater for different abilities. The right setting was not available nearby, and James was enrolled into St Philip’s, Chessington, despite Angela and James needing to commute from Fulham every day. It proved to be a positive setting for him. It benefitted from smaller class sizes, trained, knowledgeable and understanding staff. His mother Angela commented
“I felt grateful that, despite the sacrifice in commuting time and energy, we had found James a good school. It could cater for his needs. I remember thinking that I just didn’t know what we would do if our circumstances were different and we couldn’t support James in this way. Everything from getting a diagnosis, an educational statement and a suitable school place had been such a battle.”
James continued with the education that he could whilst at Secondary School but continued to experience frequent day time tonic-clonic seizures. He later needed to move to Young Epilepsy, in Lingfield, Surrey, a more specialist setting. Due to the distance involved, James needed to board during the week and returned home with his family over weekends and school holidays.
Angela described the transition as being difficult, as the arrangements meant that they would see less of James during term time. However, she explained it was also also a relief to know that James would be in a stimulating setting which could also keep him safe. He was able to access education when he could, and he enjoyed being part of a social and learning environment. Angela and Mark also had the peace of mind that comes with having a 24 hour nursing team on site.
Progressing to St Piers College, part of Young Epilepsy, James enjoyed the variety of activities and socialisation which became a part of daily life. As James grew up, he generally stopped experiencing seizures in the daytime, but experienced the regular nocturnal Tonic-Clonic Seizures that he still lives with.
Young Epilepsy
Transition From Education to Adult Social Care
Angela and Mark had seen James thrive at St Piers, and knew the importance of him being supported by a specialist epilepsy organisation. They kept these factors at the forefront of their minds when choosing an adult home. However, they found that lots of care homes focused on learning disabilities, but very few really understood epilepsy. Angela recalled
“As James is very complex with his epilepsy, we wanted somewhere that really understands epilepsy and has those vital medical links, but also able to support and encourage him on his good days, he loves to be part of a social scene.”
Angela explained that The Meath Epilepsy Charity understood complex epilepsy, but also that the Epilepsy Nurse Consultant, Lisa O’Brien had supported James as a child so knew him and his complexities well.
After coming to look at The Meath, James’ parents felt a strong sense that it would be the right setting for him. They felt reassured that it would enable James to be as safe as possible, while enabling him to lead the full life he deserved. As James is unfortunately at high risk of SUDEP (sudden unexpected death in epilepsy) it was vital for Angela and Mark to find a care home which was able to offer the level of nighttime checks, use of technology and level of epilepsy specialism required to keep him as safe as possible.
“I don’t think there is anything else like The Meath really. There is such a huge variety of activities, and I knew James would really enjoy that, I felt it was important to have those opportunities on-site, so he can have access to them easily during his good days. Also, the epilepsy knowledge of staff and contacts with professionals such as Professor John Duncan are invaluable, James is currently on five different medications for his epilepsy, these are constantly being reviewed, and we needed professionals involved with James’ care to be aware of the medications and their side effects.”
Angela explained that without the on-site Skills Centre, James would inevitably end up missing so many scheduled activities in the community due to the effects of seizures. She could see that The Meath team could bend and flex accordingly, as they understand the unpredictable nature of epilepsy. Therefore, she began the transition process of securing James’ adult care setting at The Meath. As many parents of loved ones who live in adult social care will testify, one of the many things that parents find they have little or no control over, is the timing of their loved ones transition of care setting. While some parents wait years for the right place to become available, Angela explained
“Our local authority were funding James’ placement and had been slow to confirm James’ place. However, in the end, it was all a rush. The team at The Meath were great with James’ transition though and they decorated his room in his choice of bright colours and took on board James’ request for a ‘Mr Tumble’ style bedroom.”
Transition To A New Home at The Meath
After a few transition days, during which James met his staff team, peers, and participated in a session at The Skills Centre, it was time for him to move into his new home at Bradbury Wing. James recalls how important it was for him to have his bedroom decorated in his chosen style.
“I like the colours in my bedroom; it’s like Mr Tumble, and it makes me feel happy.”
However, moving to a new home is a significant adjustment for anyone. Despite the welcoming and gradual transition period, James experienced a new type of seizure shortly after moving to The Meath: daily absence seizures. These seizures caused some unusual changes in his behavior that proved challenging. Thankfully, this period was temporary, and James’ absence seizures soon subsided. With the return to his usual experience of epilepsy, his character also returned to normal.
Once again, James had the time and energy to pursue the friendships and interests he wanted. He has friends in his home at Bradbury Wing, but his participation at The Skills Centre, particularly as a member of The Meath Choir, has helped him make friends with people living in different houses throughout The Meath, including those in Supported Living and Day Clients. James commented,
“I like dancing at home and in the Skills Centre. I do fitness at the gym to keep fit, it makes me feel happy. I like singing in the choir, it’s fun.”
Young Epilepsy
Looking Ahead With The Right Support
Angela and Mark look forward to seeing James perform with The Meath Choir at Carols at St Clement Danes, London in December. She explained
“I’m so pleased that through The Meath Choir, James has performed on stage as part of The Meath Gala Opera! What a wonderful experience to have. It is great that he is able to be supported both with the management of his complex epilepsy and to live his life, filled with the things that he enjoys and gains so much from. James has also always enjoyed learning about different cultures and socialising and he has enjoyed some of the social events and an ‘Around The World Supper Club’ at The Hive which includes learning about a country, as well as a themed menu. The Meath is also easily accessible to Godalming, which is a lovely town and is a supportive community”
Despite James having found his feet at The Meath and knowing that there is now a dedicated 24/7 team to support him with his complex needs, Angela explained that letting go was very difficult.
“I held him as a baby while he had seizure after seizure. We fought for the right support to be in in place for so long- and even though I knew he had the right support at The Meath, letting go and supporting him to move out of home was so tough. However, it wouldn’t have been fair to James to keep him at home, isolated from social settings and peers. Now, on his good days he can access so much and wants to be involved in so much. I know we have done the right thing for him, and our family. The Meath is not too far away from us as a family and we are welcomed to pop down whenever we like, or for James to come home for a few days, my brother and his family also live nearby and can pop-in, which I think also says a lot about the caring staff in the house.”
Angela and James are looking forward to a trip to the theatre soon, they are going to watch the Cbeebies Panto, then he is off to watch Justin Fletcher in Guildford with staff from the house. It’s wonderful to see that James and his family have a great balance of precious time together at weekends, but that they also benefit from the dedicated support and facilities in place for James to enable him to thrive over many years to come.
Thank you to Angela for sharing her story. Like so many parents who kindly share their experience of parenthood with us, she described her son as incredibly brave and resilient. From listening to her, it is easy to see where James gets this from.
