The region’s three facilities for children with life-limiting illnesses play a vital role as the young people they look after for grow up. Katie Baldwin reports.
They’re typical teenage pursuits – shopping, hanging out with friends and staying in bed until the afternoon.
But for young people with a life-limiting illness, these activities can be out of reach, making the gulf between them and their peers even wider.
Not so for those cared for by Yorkshire’s three children’s hospices – Martin House in Boston Spa, Bluebell Wood in Sheffield and Forget Me Not in Huddersfield.
A large proportion of those who attend are actually over the age of 16.
Therefore the three facilities, which are benefitting from the Yorkshire Post’s Yorkshire Children’s Hospices Appeal, must find a balance between providing care while also maximising independence and dignity.
Shelby Lynch, 18, has been visiting Martin House for eight years, and last year decided to move her stays from the family-centred “house” to the teenage and young adult unit Whitby Lodge.
“In the lodge, I feel like I’m treated more like an adult and I can do a lot more things and go out a lot more,” said Shelby, from Leeds.
“The staff are lovely and I get the freedom and one-to-one support that I don’t get if I stay anywhere else. It’s great to come here when you’re stressed and need a break, and it gives my family a chance to relax as well.”
Shelby, who has Spinal Muscular Atrophy and relies on a ventilator, has formed close friendships through her stays.
“I’ve made some of my best friends here and over the years we’ve become really close,” she said.
“We try to book our stays together and go out shopping to the White Rose Centre or into Leeds city centre and grab some food. A lot of people think it’s a place you come when you’re really ill or where you stay at the end of your life but it’s not what it’s like at all. To me it’s like a holiday home and I really enjoy my time here.”
For those older than Shelby, it’s even more important that they can stay in an environment which caters to their needs.
Hassan Nazir, 24, has muscular dystrophy and relies on a specialist wheelchair.
He has had more hospital stays than he cares to count, as well as periods in a nursing home, and while children’s care is no longer appropriate, he often feels out of place in adult facilities.
“Whitby Lodge has been the best thing that has happened for me,” he said.
“It really opens my eyes going to different places where you don’t always have a say in your care or your routine.
“As a teenager or young person, you want to stay up during the night and sleep during the day. The lodge is like a holiday – I can do what I want, go to bed when I want, and get up when I want.
“I usually get a booking with some of my friends so there are four or five of us together.
“We get up around one or two in the afternoon and, if the weather’s good, we go out in the garden pretty much all day, sit in the sun, have a few drinks – and just do what anyone else does.”
Hassan last summer created a unique artwork for Whitby Lodge’s recreation room by using his wheelchair to paint a 3m canvas. Enabling him to enjoy life, in spite of his condition, is one of the most important ways the hospice helps him.
“I’ve grown up here and I’ve known some of the staff since I was very little – they’re like family. They talk to me like a person, not like a patient or a client,” he added.
“Whitby Lodge is also a place to come and meet people with similar disabilities, where you can support each other and give each other guidance and help.
“We feel a sense of normality here that you just don’t get anywhere else.”
Though the hospices care for young people into their 20s, there comes a time when they need to move on.
Anna Teahan, who has been going to Bluebell Wood in Sheffield since 2010, and her family are currently making that change, supported by the hospice’s transition team.
The 24-year-old has Down’s Syndrome and a form of epilepsy called Lennox Gastaut Syndrome. She is unable to walk or talk and has complex care needs.
Her father Brian said: “Anna enjoys music, being around other people and lights. She is able to communicate when she is happy and also lets you know when she doesn’t like something.
“When she stays for respite and day care at Bluebell Wood, she loves the sensory rooms, the whirlpool and going for lovely walks in the garden. Anna is a very strong-willed person – she wouldn’t have survived as long as she has otherwise.”
The upper age limit for Bluebell Wood’s services is 25 and so young adult co-ordinator Gail Smedley is helping her family find a suitable place for Anna to receive respite and day care in future.
“We just want to find another Bluebell Wood really,” Mr Teahan added. “The staff members are fantastic and every time Anna has stayed at Bluebell Wood she comes back thoroughly happy – it’s a safe, secure, warm and fun place to be and we know she appreciates that.
“Transition between children’s and adult services is quite a complicated process, as there are funding implications too.
“It’s in the spirit of Bluebell Wood to work in this way, they know Anna well and what she likes. There aren’t many providers out there for over 25s, so to have guidance is brilliant for her continuity of care.”
Bluebell Wood’s Board of Trustees has recently agreed to expand the transition services.
Gail Smedley explained: “As advances in medicine come about, children who are supported by us are likely to live longer, which is amazing. “We need to be here for that consistency in their lives during a process that can be complex.”
• Donate to the appeal online. Or, send a cheque, made payable to Yorkshire Children’s Hospices’ Appeal, to: Kayla Lindsey, Yorkshire Post, No 1 Leeds, 26 Whitehall Road, Leeds, West Yorkshire, LS12 1BE. You can also download our donations pack, containing all you need to know to help the appeal.
• Are you supporting the appeal? Tell us about it via social media using #ychappeal or email firstname.lastname@example.org.