When Carole’s son David was born in 1989, there were no early signs that he was different. “He was full term, a normal delivery, he seemed to tick every box on what looked like a healthy and thriving newborn,” she recalls.
But by the time David was 18 months old, Carole and her husband – both doctors – began to notice signs that their son wasn’t developing like other children. Before he turned three, David was diagnosed with autism, a relatively early diagnosis for that time.
Now 36, David is a tall, robust and physically healthy man with autism, epilepsy, severe learning disabilities, and no verbal communication. He lives happily and safely at Beeches, a Cygnet Social Care service in Retford, where he has flourished, thanks to consistent support, long-standing relationships with staff, and a setting that truly understands his needs.
But that journey has not been easy.
Fighting for the Right Support
David’s early years were spent at home in Nailsea, near Bristol, attending a local school for children with special needs. But as he approached 16, his educational review concluded that his needs could no longer be met in that environment.
“He was hormonal, grumpy, sometimes violent. He was 6’4, non-verbal, epileptic, clearly a young man with very complex needs,” says Carole. “We were fighting tooth and nail with the local authority to find a place that could properly support him.”
Eventually, after extensive searching and dozens of enquiries, the family found Broughton House in Lincoln, a Cygnet Social Care service. From their first visit, Carole knew it was the right place.
“I must have phoned 25 different services and visited at least 12 of them, but it wasn’t until I walked through the door at Broughton House that I breathed a sigh of relief, confident I’d found somewhere that could make him happy,” she said.
“I had a tour, I saw residents who all looked happy, I met staff, and I knew it was the right place.”
Broughton House
In 2006, David moved into Broughton House, and everything changed.
“He went from being totally dependent on us, to not needing us at all. And that was devastating. It felt like a bereavement, I had a grief reaction,” Carole says. “Most children grow up and leave home gradually. But for us, it was like a cliff edge.
“It all happened at once. You go from your life being almost consumed by your caring role, to not having it at all. Although you know he is absolutely in the right place, getting the care he needs, as a Mum and a Dad, we found it hard to let go.
“After we dropped him off I cried all the way home but the staff were supportive and phoned me twice that day to let me know he was settling in and happy.”
Despite the emotional pain of seeing David leave home, the changes in David were astonishing. “He blossomed,” Carole explains. “We didn’t see him for four weeks to give him a proper chance to settle and the difference was incredible. He started using utensils, became independent in toileting, he even did a paper round. Essentially, he grew up and he did it really quickly, it was amazing.
“He absolutely, completely justified all the fighting and battling we had done to get in there.”
After seven years of progress at Broughton House, David was ready for a new home more suitable to his existing needs. He moved on to Beeches in Retford in 2013, where he continues to thrive.
The Importance of Continuity and Care
What sets Beeches apart, Carole believes, is the incredible dedication and consistency of the team.
“Kev, his key worker, has known him for 11 years and Amy, the deputy manager, even longer. That kind of staff retention is rare, and it makes such a difference,” she says.
“They get great joy from seeing David happy. They know what he loves – loud rock music, musical theatre, trampolining, going for a ride in the bus when the weather’s miserable. They make sure he has a great time.”
Carole added that communication with the family is regular and reassuring. “We get at least a weekly call and more if something happens. That degree of contact gives you enormous faith in the service. They work hard to build relationships not just with their residents, but with the loved ones. They invest time in getting to know you as well, and you always feel so warmly welcomed when you visit.
“There’s a storybook that shows David’s life so far, because he can’t tell you himself. That’s really crucial if there’s staff who perhaps don’t know him quite so well, they can see immediately what his likes and dislikes are and sets them on the front foot with him.”
For Carole, seeing David happy and thriving is everything. “We know he is going to need care for the rest of his life and that’s always going to be an ongoing worry. But the skills he has learnt, like having good personal hygiene, going to the toilet independently, eating with utensils, they might seem small, but it’s huge for David. We’re so proud of him.”
Difficulty in Letting Go
Though David now lives more than 150 miles away, Carole and her husband visit monthly. They even bought a mobile home nearby to stay close when needed.
“It was incredibly hard to let go,” Carole admits. “You suffer guilt. You lose that intense caring role, and start to have a life again. That brings relief but also guilt.”
She added: “We’ve been like swans. It might have looked serene, but underneath we were paddling furiously. Now, we see him enjoying musical theatre, swimming, trampolining and generally just living life. He deserves that happiness. And we’ve absolutely found that for him.”
Advice to Other Carers
To other carers facing similar transitions, Carole is clear: “First of all, it will hurt. But you have to remember, you’re doing the right thing. You’ve got to recognise the guilt you’ll feel because actually you’ll start to have a better life when you lose this intense caring role. When you’re a carer, you don’t have shifts. You work 24 hours a day, seven days a week. That level of responsibility eases when they go into a home and it frees you up a bit to start doing things again which were always difficult.
“Also, go and see the service first. Meet the staff. Trust your instincts. I knew Broughton House was right the moment I walked in. Make sure you fight until it feels right for you.”
On what the future holds for David, Carole adds: “My hope is simple and it’s that he stays happy. That he can keep doing the things he loves. Musical theatre, holidays, swimming. I just want him to enjoy life.”
Reflecting on their journey, Carole adds: “We are so incredibly grateful to everyone who has helped him over the years. Cygnet really appreciates carers, they run support groups, have ambassadors, and make the effort to know us. That really matters.
“David didn’t grow up like other children. He needed us, and then suddenly, he didn’t. That was so hard. But now, he’s where he needs to be. He’s safe and he’s thriving. We couldn’t be prouder.”