From poor mental health to being able to better manage his condition and making new friends – Dennis’s story
Growing up Dennis always struggled with stomach problems and tiredness, but it wasn’t until he was 15 years of age and ‘things had got really, really, really bad’ that he was admitted to Nottingham University Hospitals (NUH) where he was diagnosed with Crohn’s disease – a digestive disorder which can disrupt daily life.
A lifelong condition
Coming to terms with the reality of a lifelong condition was difficult for Dennis. “It was a relief to finally know what was going on. But when they said it was for life …I had thought I would grow out of it. It was a bit of a shock to me.”
Whilst in hospital Dennis was assigned a mental health doctor who mentioned the Youth Service for young patients with long term health conditions.
He was initially too nervous to attend the Youth Club but agreed to try out the monthly Board Game Group in the centre of Nottingham. A friendly smile from one of the Youth Workers gave him the courage to go in and take part.
“They gave me the space to make the decision to go to the Youth Club in my own time, rather than getting my Mum to force me to go.” he explained.
Once he was back at home, Dennis’s ability to socialise with his school friends and join in activities was affected by his illness and he began to feel quite lonely. He decided to give the Hospital Youth Club a try.
“The Youth Club got me out of the house and gave me something to do and I now look forward to going each week.
“It’s a fun place with a pool table, badminton, basketball, a tuck shop – and the board games are a blast!” enthused Dennis.
The Youth Club is a great leveller, where the young people are seen for who they are beyond their illness or medical apparatus.
Dennis explained: “Before, when I was playing with friends, I would get really tired and if I didn’t continue playing, I’d feel ostracised. It’s different at the NUH Youth Club. It feels like a community and the Youth Workers just understand us!”
One to one support
As well as providing a place for socialising and having fun, the Youth Club is a place where Dennis can receive one to one support from a Youth Worker about any worries he has.
“There are communal areas for chatting, but also private spaces if you need a chat with a Youth Worker. One thing I’m so grateful for, is being able to have somebody unbiased who can listen to my problems,” he said.
Dennis now feels more able to manage his Crohn’s disease and has made a bunch of new friends.
He’s also presented his experience of being a young patient at a meeting of children’s doctors in London, alongside one of his friends from the Youth Club.
Clare Alderson, Renal Youth Development Worker, NUH Youth Service, said: “Coping with a chronic health condition means that all the difficulties of growing up that Youth Workers deal with are amplified. When I first met Dennis, he was quite anxious and he used to wear his headphones all the time.
“He doesn’t wear the headphones as much now; he’s grown so much in confidence. It’s rewarding to know that we’ve given that important helping hand to help young people cope with their condition and maintain good mental health.”
From loneliness to feeling part of a community and more confident attending appointments – Maia’s story
Maia became poorly during the Covid pandemic. She had an unexplained inflammation of her spinal cord, diagnosed as Transverse Myelitis which resulted in her needing a wheelchair.
“I was in hospital at the Queens Medical Centre, Nottingham, for three months and because it was during the lockdown there were restrictions on visiting. I couldn’t see both my parents at the same time or my extended family at all. I felt really lonely and isolated,” explained Maia.
Then, just 13 years of age, Maia lost a year of school due to her illness, which meant she fell behind with her education, as well as missing out on valuable time with her friends.
Whilst in hospital a youth worker from NUH Youth Service, Sian, visited Maia on the ward and invited her to come along to the youth club.
“Going to the youth club made me feel like there was a community out there and I wasn’t on my own.
“It was the first time I’d socialised with other people after my injury and helped me realise that everything’s going to be fine.”
But Maia’s treatment has not been plain sailing, having to undergo a plasma exchange as part of her treatment to ‘clean’ her blood and ensure her organs were protected from further damage from the virus (which affected the use of her legs). She also had to go to London for three months of intensive rehabilitation.
The opportunity to join in with fun activities whilst accessing the support of trained youth workers helped Maia feel more in control of her health and treatment at the hospital.
“No matter what health condition you’ve got there’s always somebody there who will understand. If you need help with an appointment or you didn’t quite understand what a doctor meant, a youth worker can always explain or help you get the answers you need.”
Two years down the track and Maia is back at school and having tutoring to catch up on her education. She attends the youth club every Wednesday and has all the youth workers phone numbers, so she can call them at any time she needs support.
As well as going to the regular youth club, Maia now also participates in trips, for example to the bowling alley and board games café in Nottingham.
“The support of the youth service at the hospital has given me opportunities to socialise and get back to an ordinary life. I’m also more confident about going to hospital appointments,” said Maia.
One of the highlights of her journey through youth work has been attending a meeting of children’s doctors in London to share her experience of being a young patient along with her new friend from youth club, Dennis. The two gave a presentation together which has helped inform best practice about the way healthcare professionals communicate with young people about their care.
Maia said: “Having the opportunity to go and speak at the conference was very empowering. It was good to be able to give advice and feedback about how doctors communicate with young people.”
When asked how she describes the support she received to other young people Maia says: “Youth work changed my life and I think it will change yours.”
Clare Alderson, Renal Youth Development Worker, NUH Youth Service, said: “Maia has been quite chatty from the outset, but she’s quite stoic. She’s had to go through some exhausting treatment, but she doesn’t dwell on things. Our job as youth workers is just to be there whenever she’s needed that bit of support. It’s wonderful to see her enjoying herself after coming out the other side.”