How Demelza supports those transitioning to adult care

When a child with a serious or life-limiting condition turns 18, everything seems to change as they transition to adult hospice care.

Here at Demelza, our teams work with our families through this process, creating a pathway that will support the whole family until their child is 25 – they won’t be alone.

This #ChildrensHospiceWeek, Lily’s mum, Michelle, shares how relieved she is they’ll still have access when Lily turns 18 and stops accessing our clinical service.

“Lily, our 17-year-old, has Sanfilippo syndrome which is a life-limiting illness for which there isn’t a cure; the best way I’ve found to describe it is that it’s similar to dementia. She got to a certain point of development and then, sadly, she started to lose her skills again – her speech and mobility in particular. Despite her condition she is a regular, sassy teenager who knows how to put her views across! She’s always got a little smile and you can tell when she wants to get into mischief; she also brings so much joy and light to our family.

Lily has a lot of physical disabilities that come with her condition; she struggles with dystonia and seizures, and her hip joint is badly affected by a lack of blood supply. This can all make moving around, especially in cold weather, really difficult for her.

Using the hydro pool at Demelza lets Lily relax and actually get some exercise without being in pain. She isn’t bearing any weight, she’s able to take things at her own pace and we can help to move her arms and legs to slowly feel less ‘tight’. She loves it while she’s in there, you can tell how relaxed she is by how dozy she gets, but you also see the benefits in the days after a hydro session; the way she moves more freely and clearly feels happier in herself.

Lily will be 18 next year and won’t be able to access Demelza’s nursing and clinical care anymore – until recently, that included the hydro pool. Every time we would go for a hydro session with Lily I would talk to Paul, one of Demelza’s transition navigators, about how much this worried us.

Lily can’t use a public pool, for many reasons. They’re too cold for Lily as she can’t regulate her own body temperature, they’re always too busy which she wouldn’t be able to cope with emotionally, and she is doubly incontinent so for her own dignity it just wouldn’t be fair on her. That being said, there just isn’t another facility anywhere near us with a hydro pool that we’d be able to use after her 18th birthday.

When it became clear that this was the case, Paul said he would try and find a way for us to access the Demelza hydro pool after Lily turned 18. He wasn’t sure if it would even be possible, but he wanted to try.

When he eventually told me that he’d managed to secure two sessions a week – not just for Lily, but for any family using Demelza with a child between 18-25 – I just couldn’t believe it. It’s just so amazing knowing I have somewhere I can bring Lily that’s safe and familiar, where she can still get all the benefits of using the hydro pool. I can’t thank Paul and Demelza enough for making this happen for us.”

Michelle, mum to Lily.

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