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 over coffee at The Hive, to share her experience of being James’ mother, and how over the years, she and her family have navigated the uncertain pathway of securing the right support for him.
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, days when 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 and as an infant would regularly experience seizures throughout the day and night, with some 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.
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, as part of hospital protocol, 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 their son, 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 due to the 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 that 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 continuing to experience frequent day time tonic-clonic seizures, he later needed to move to Young Epilepsy, in Lingfield, Surrey, who are highly skilled in supporting complex epilepsy. 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 both difficult, as the arrangements meant that they would see less of James during term time, but also a relief to know that James would be in a stimulating setting which could also keep him as safe as possible due to their knowledge of complex epilepsy. 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. While at St Piers, it was here that they met Lisa O’Brien who later became a Trustee at The Meath and then, Epilepsy Nurse Consultant. 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.
From Education to Adult Social Care
Having seen James thrive at St Piers and knowing the importance of him being supported by a specialist epilepsy organisation, Angela and Mark soon had to look for James’ adult home. Choosing a care home for one’s adult child, is a responsibility and weight that most parents do not carry in life, and while lots of care homes focused on learning disabilities, very few really understood epilepsy to the degree that James’ parents felt was required in order to fully and safely support James. 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 not only did The Meath Epilepsy Charity understand complex epilepsy, but the then 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, as it would enable James to be as safe as possible, but the set up also enabled 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 Skills Centre, James would inevitably end up missing so many scheduled activities in the community due to having had seizures in the night and being late or being unable to attend. She could see that The Meath team could bend and flex accordingly, as they understand the unpredictable nature of epilepsy. And so, she began the process of securing Jame’s 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 one moving in. 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, but 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.”
A New Home at The Meath for James
After some transition days in which James met his staff team, peers and tried out a session at The Skills Centre, it was soon time for him to move in to his new home at Bradbury Wing. James recalls how important it was for him to have his bedroom decorated for him in his chosen style
“I like the colours in my bedroom, it’s like Mr Tumble and it makes me feel happy.”
However, moving home is a huge adjustment for anyone, and despite a welcoming and gradual transition period, unfortunately, shortly after moving to The Meath, James experienced a new type of seizure for him; daily absence seizures.
James’ experience of absence seizures caused some uncharacteristic changes in his behaviour which proved challenging. Thankfully, this was temporary, and James’ absence seizures soon ceased, and with the return to his usual experience of epilepsy, so too did his usual character.
Once again, James had the time and energy to pursue the friendships and interests he wanted to. James has friends within his home at Bradbury Wing, but his participation at the Skills Centre, especially being a part of The Meath Choir, means that he has made friends with people who live in different houses across The Meath, 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.”
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 James with his complex needs, Angela explained that letting go was very difficult.
“I held him as a baby while he had seizure after seizure, and 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 of my young adult child and supporting him to move out of home was so tough, 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 James, 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.
