“Fenton is 17, so at the moment he is still accessing all of Demelza’s services. I appreciate that numerically, maybe, Fenton is nearly an adult now, but actually nothing has changed. If anything, as he’s got older, his needs have got more profound."
"Medical science and care have evolved so much for young people like Fenton, but nothing else is keeping up with it. Hospitals can’t keep up with it – they can put young people on to adult wards but they still need everything done for them 24/7. Who’s going to change him, who’s going to sit with him when he has seizures, who’s going to feed him, give him water, do his mouth care? It’s only when you point that out that people realise how much Fenton still needs from me. Nothing has changed for him, but suddenly there’s this huge gap. There just aren’t the resources.
We didn’t start using Demelza until Fenton was 14, after he had spinal surgery. Up until then, it was simply the word ‘hospice’, and the connotations of end of life, that put me off. I had always done all of Fenton’s care on my own, and I just couldn’t imagine letting someone else look after my son. He’s non-verbal, so how do I know everything’s being done right? Even though it’s Demelza, it makes no difference, it’s still a total stranger. Fenton has been on the Demelza caseload since he was five years old but we didn’t access anything, Demelza would just occasionally check in on us and see if we were ready to get some support. But after his spinal surgery, I was so exhausted that our Demelza nurse finally convinced me to give Demelza a try.
We started doing hydrotherapy in the pool to get Fenton and I used to Demelza. We got to know a few of the staff through doing hydrotherapy and then it kind of became part of our routine. Eventually we booked in for our first respite break. The first time we stayed, I went up to bed at around half eight at night and slept until about half three the next afternoon - the care staff were all trying to work out if they should wake me up! I woke up with such a start! I’d literally been asleep for about 17 hours.
I know how stupid it sounds, but I think any parent, let alone a parent of a child with complex needs, would say the same – you need that break just to get some sleep, to sit and read a book, to have a bath. Last time I stayed I sat in the gardens to read for a while. The sun was out, and I shut my eyes and lounged there, really listening to the birds tweeting and the water trickling. It was just exactly what I needed.
Demelza is just somewhere we can go that we know Fenton has everything he needs. He loves the hydro pool so much – I think it’s the buoyancy. Weirdly, Fenton floats really well. He needs support for his head, but his whole body just floats. In the water he has no slings, no wheelchair, nothing else is involved, it's just him and the water.
We go to the transition group hydro pool sessions once a month and we see lots of different families, which is nice. It’s just different - if you get in a public pool with a disabled child, no one really speaks to you. But here, you start talking, and the other parents just get it. Although our children are totally different, we’re all there for the same reason.
You definitely get your information from other parents too. Because Transition goes up to 25, you meet people that have already gone through it all, and their knowledge is just amazing. They can tell you how to do things and stop you wasting time on dead ends. It’s just a whole hive of information, it’s really, really good. If you ask Paul or Claire in the transition team something, they will either know between them or they will find out for you, and that’s so helpful.
I would say I’ve made friends through transition, and Fenton has too. Through the group hydro sessions he’s met one particular young lady, Ivy. Initially they just sort of looked at each other from their wheelchairs, but then they got into the pool and it was like a switch had been flicked. They realised they could be near each other, there was no wheelchair in the way, they could touch each other, smile, and get close enough to actually see each other. That was just beautiful to see. Because they weren’t Fenton and Ivy, two disabled young people - they were just Fenton and Ivy.
I think it’s so nice for the young people to get together. At Fenton’s school, he doesn’t really get to interact closely with the other young people as much. But here, he’s with people around his own age. They’re all young adults together, you can see they love interacting with each other. And us parents have really gelled as well. It makes a huge difference.
None of that would have happened without the transition service. Paul and Claire are a phenomenal team – they have so much knowledge. Claire, from her previous roles has all that external knowledge, and Paul, from having worked in care at Demelza has that inside understanding, and the two together is just explosive. There’s so much knowledge there. The families and the young people really react well to them.
What’s also great about the team is that they can support with literally everything, it’s not just hospitals and schools and benefits, but also personal things, puberty, nothing phases them. You can ask them things you would probably never ask anyone else! Because you know they won’t judge you, they’ll just help.
One of the hardest things about navigating the change to adult services is that you don’t know what you need or what support you should be getting, unless someone tells you. But the team here will tell you when other services should be providing more for you, and they will fight your corner to make sure you’re getting the support you need. So far for us, it hasn’t been too bad, but that’s because I have Paul and Claire. If I didn’t have them I wouldn’t have a clue, and Fenton wouldn’t have what he deserves. We would be stuffed. It’s horrendous, but it’s doable because I have Paul and Claire on my side. They’re more than happy to write strongly worded emails to back me up - they can be feisty! They won’t let us accept less than we deserve – they know Fenton is worth way more than that. They fight for us, and they know what to fight for. Fenton might not have a usual teenager’s future ahead of him, but he deserves not to be stuck.
Fenton’s not even 18 yet, and the work they’ve put in to make sure everything’s in place for that is incredible. When they start mentioning transition at first, you think you’ve got ages, but then suddenly it’s here and you have to get everything sorted! But that’s where they jump in. It takes a huge weight off your shoulders. They do the homework and the legwork for you and give you the answers you need.
I can only speak for myself, but most of us wouldn’t know what to do without Paul and Claire. They’re always there. They’ll show you the roads you can take, and when you’ve chosen one, they’ll walk down that road with you and make sure you have everything you need along the way.”
- Sharon, mum to Fenton
