Making an extraordinary difference to young people with complex needs

“The Transition service is focused on children and young people from age 14, right up to their 25^th birthday. It makes up about a third of Demelza’s caseload, around 200 families – so it’s a huge part of Demelza.

The transition service offers support for young people and their families with the transition between child and adult services – including moving between different systems, applying for benefits, looking for further education, group events and activities, listening support, and advocacy. There’s so much involved in navigating it all, so much knowledge required that nobody tells you as a parent – that’s why we’re here to support.

I think there’s a lot of anxiety for families in the run up to their children turning 18. As they start to move into transition at 14 to 16, they start to worry – the closer they get to being an adult the bigger the anxiety, because they have a blanket of care wrapped around them and a whole support network with the nurses, the care, and the respite, and that all disappears at 18.

That leaves families with a gaping hole and it’s horrible. The more we can do, the more support we can build for that 18-24 age group, which I think is a neglected age group, the more safe and secure families will feel. For them, nothing at all changes, it’s just the age. Someone said to me the other day “thank you for always fighting for our older young ones” and that description is spot on, because the young people don’t suddenly change at 18. At 17, they might be watching Mr Tumble, and at 18, they’re still watching Mr Tumble – nothing changes. So to have everything swept away from them is really hard.

Our transition pathway starts at 14, when we make initial contact, introducing the transition team and what we offer. We follow this up at 16, providing a transition checklist and offering support with benefits, such as Personal Independence Payments (PIP), help with forms, advice and signposting. Then at 18 clinical care ends, but we still provide support between ages 18 and 24. We are there for whatever they need, whether that’s listening support, advice, or providing different events and activities for families to get involved in.

From 18, we offer transition days, which run quarterly for anyone on our caseload in that age group. There are arts and crafts activities, cooking, gaming, and we provide lunch. It’s a chance for parents and young people to meet each other, engage with Demelza, and create some peer support.

Before the transition service existed, everything stopped at 18. So these transition days were something we identified a need for from talking to parents. We also introduced access to the hydro pool for over-18s, with weekly bookable slots and monthly group hydro sessions, because families still needed it, and we realised that families want to spend time with other families. And we’ve seen some amazing friendships come about because of that.

We’re always listening to families. For example, being able to offer the hydro pool to over-18s came about from a single comment one mum made a couple of years ago. Hydro has such amazing benefits for her daughter Lily – she usually has to be carried into the pool, but because of the hydrotherapy she is able to walk out with support. It’s really impactful - it’s so much more than a swim for her. And so we fought to be able to keep offering her that after she turned 18.

We’re now piloting offering bookable spaces too, so families can book the sensory room, the cinema room, the playground, and team this up with using the hydro pool as well.

We have an online transition network meeting once a month, which is available to any parents in the transition caseload. What we’ve found is that in that group, parents help parents. Sometimes we just take a step back and let parents chat and talk about all of their stresses. Parents can talk to other parents who are going through similar things and learn from each other. Friendships get created.

It's fantastic watching parents engage – to see two people who never knew each other meet and really hit it off, to watch that friendship bloom and develop, is fantastic. Those friendships mean they can lean on each other as well as us. Having a child with complex needs can already be quite isolating, but especially so when you’re looking at losing support, so you need people around you who understand.

Watching their children create friendships too is lovely to watch. There are two young people, Fenton and Ivy, who attend group hydro and watching them interact in the water together is great. It’s so important to give young people the chance to engage with each other.

We currently run two teen weekends every year where under-18s can stay over at the weekend, access clinical care, and take part in more teen-focused activities, like gaming. For a lot of our young people, gaming just levels the playing field. They’ve told us they enjoy gaming because it’s a form of escapism, they can get out of their wheelchair and be whoever they want to be. They can play games with people that have absolutely no idea that they’re in a wheelchair and maybe only have the ability to move their hands. And they really do create friends from it – lifelong friends.

It’s simply not as easy for these teenagers to make friends and socialise. Most peoples’ houses aren’t adapted to fit multiple wheelchairs, so they can’t just pop round and all hang out. So it’s really important that we provide a space that teenagers can come and meet other teenagers with similar conditions. Some of our teenagers have never met anyone with the same sort of condition as them, who are facing the same things. They may have felt so isolated, like they’re the only one. But now they’re meeting teenagers just like them, in a space that’s accessible where they can do whatever they want. It fills that social need and stops them feeling so alone. It’s hugely important.

There’s so much more that we’d like to develop as part of the service, more access to services, more activities, more support – we’re only just getting started.”

- Paul Packman, Transition Navigator