Matthew and Simon’s story

Matthew began to experience seizures at the age of six after falling on the back of his head on a stone floor two years previously. By the age of 16 his seizures had become frequent and were having significant impacts on his and his family’s life. Matthew had a placement at a boarding school and as wonderful as the team were, they struggled to accommodate his medical needs. Ultimately, he returned to his family who spent a year trying to find another placement.

Matthew’s father, Simon, reported how hard it was to observe his son having a ‘major’.

“One day we went to Madame Tussauds. It was a typical family day out until he started to have a terrible seizure. We both got down on the floor and I wrapped my arms around him. We were there for a long time. It was around that time that we realised that we couldn’t continue to care for Matthew at home and that we all needed more support.”

“Things changed radically for the better when we were introduced to David Lewis School through a family friend. Matthew was quite poorly at this stage and it felt quite momentous that he could attend a school where he would also have ready access to medical staff. The team were amazing and spent a lot of time understanding him and his condition. Reasonably quickly, his seizures became much better controlled.”

Matthew’s life at David Lewis has been a full one. Over the years he has taught IT to underprivileged young people at a local college, practised his piano and become a skilled carpenter. Now, in his early 60’s he lives with others in a David Lewis community house and has far fewer major seizures than in the early days. Simon notes,

“David Lewis has always been curious on Matthew’s behalf and ready to try new approaches to his care. The game changer for Matthew has been the calmness, the safe environment and the predictability of the care he has received since going to the Centre all those years ago.”

The Potten Family’s story

Joanna came to David Lewis in her late 30’s. Her previous long term placement had broken down as the staff couldn’t support her medical needs around her epilepsy. It was a difficult period for her family as they tried to find somewhere suitable for Joanna to live, and for Joanna as she tried to make sense of the changes to her rituals and homelife. Her mother, Diana, shares with us her experiences:

“It was a challenging time. Jo Jo was finding things really difficult and this translated to some extreme behaviours. She needed full time care and whilst she stayed with us at home for a while, it really wasn’t a long term solution.

“I went to the hairdressers and picked up a copy of Good Housekeeping magazine. I spotted a small article that talked about epilepsy and it mentioned David Lewis, and how it was a beacon of care for people like Joanna. I rushed home and called them. Whilst they were helpful, they also tempered my expectations by saying that they had a long waiting list. After a long discussion they suggested Jo Jo come and stay with them for a six week assessment period, they would observe her and report back on her needs. When the six weeks ended, we went up to Cheshire to meet with the staff writing the report. I can’t tell you how relieved I was when they said, ‘we think she should stay with us’.

As Joanna settled and received expert medical care, her behaviour changed. Over the years Jo Jo lived her life to the fullest. She began to call David Lewis ‘home’ and shared her love of classical music and dancing with her house mates and staff. 

Diana, explained how important it was to Jo Jo, that she was having similar life experiences to her two brothers,

“She had her own life at David Lewis. She did things her brothers did and that was great for her self-worth. If she’d stayed at home with us she would have been really isolated. Instead, she had real friendships, a long-term relationship and she worked in the on-site shop two days a week. She had independence for the first time and that was so important to her.

Jo Jo took her job at the shop seriously. She knew the price for every piece of stock. Simon, her brother jokes, “She would tell me every week about the rising price of Crunchies! She would often refuse to go out or talk on the phone late on the night before her work days, telling us, ‘I need to go to bed early tonight, I’ve got work tomorrow’.”

Simon told us how living onsite here helped her to rediscover her gregarious character, “she had friends that she couldn’t wait to tell you about” and how the staff caring for her showed palpable affection.

“They really went the extra mile. On my wedding day they drove her all the way down to Oxfordshire. One of my special memories of that day was Jo Jo grinning in the back of the staff vehicle surrounded by bouquets of flowers. She was like the Queen of Sheba!”

Joanna loved going to the onsite café at David Lewis, visiting religiously three times a week. The staff knew to reserve her the table she loved, taking care to get the ‘reserved’ sign up early! Jo Jo loved the café, meeting her brother Jonathan there on his regular visits.

“I loved watching her in action in there. She relished the sense of occasion and I loved the insight it gave me into her daily life. She knew everyone and would spend her time directing people and making sure they were doing everything just right. Plus, she always paid for lunch!”

Sadly Joanna passed away in 2022. At her well attended funeral her brother Simon spoke of how he knew Joanna was happy at David Lewis because her behaviour in her David Lewis house mirrored her behaviour at home with the family, “It was the same Jo Jo, she got everything she needed there too.”

Stella and Elise’s story

Stella’s daughter Elise has been living at David Lewis for just over seven years. Due to her diagnosis of Dravet Syndrome it had become difficult to accommodate Elise, nicknamed Lou, at the local special needs school where she had a placement. Lou wasn’t engaged or motivated and sometimes spent the whole day at school asleep or having lots of low level seizure activity.

Over time Lou became more isolated and withdrawn. Stella became increasingly aware of the need to move her daughter and get her the support she needed and reached out to the Dravet community.

“David Lewis was a name that just kept coming up”, said Stella. “We visited and were immediately blown away by the facilities on offer. Whilst the thought of Lou living away from home was so daunting, we knew it was the right thing to do for her, and that David Lewis would give her the care she needed”.

Lou moved in to a single occupancy flat adjacent on the main site a year or so later. Stella commented, “I was heartbroken on her first night away. It was such a big step. But within such a short time she was so much calmer. Being in that flat was the making of her, she really thrived in that environment.”

At the same time Lou received specialist support from the medical and behavioural teams at David Lewis. The medical team trialled new medications to get her seizures under control. The behavioural team worked to unpick her challenging behaviour and put strategies in place that were followed by her care team.

“It’s been like a virtuous circle”, says Stella, “When her seizures were better controlled her behaviour improved. Lou is great fun and David Lewis has allowed that part of her to shine. She likes nothing more than to be chilling out in her flat with her care worker listening to her favourite Status Quo songs! She prefers her own company but David Lewis staff have helped her to come out of her shell. And nowadays she’s trying new things like swimming and walking, these are activities that would have been unthinkable some years ago”.

“Ultimately the environment at David Lewis has been the making of Lou. The set up and privacy of the site gives independence to people with quite complex needs. The staff have worked tirelessly for Lou to unlock her potential. I’m convinced she’s in the best possible place.”