Shooting Star Children’s Hospices supports children and young people living with life-limiting conditions up until the age of 21. But what happens after that?

Thanks to medical advances, many of the young people we support are living longer, fuller lives than ever before – around 50% of those we support are now over the age of 12. Yet this means that more of them face the prospect of moving away from the support we offer, and into the world of adult social care, where many will need to manage and be responsible for their own care needs for the first time.

To help support young people approaching this change, our transition team ran our first ever Transition Week, with four young people, Sumi, Aiden, Sophie and Millie-May coming to the hospice to spend a week developing life skills, learning about upcoming challenges, and making friends. One thing the group highlighted was that they wanted a week that was truly focused around them and their needs, so we made the decision to close the hospice to respite care (except for emergencies and end of life) for one week, in order to give them a space where they could feel free to act as they wished. Our care staff wore their own clothes, and the young people were free to decide when they wanted to get up or go to bed.

Meeting some bikers at Transition Week

Prior to the event the group were involved in planning out the week to ensure they got what they wanted out of it, with workshops planned and speakers secured for important topics like money management, accessible transport, and cocktail making!

Once they’d arrived and unpacked on Monday the group took part in an icebreaker exercise to help everyone get to know one another, ready for the week ahead.

On Tuesday they went shopping to buy food for their BBQ (which they’d voted to have), in the evening. Around lunchtime they returned back for a creative Art therapy workshop, where they worked together to create a collage with a theme of ‘what is life like as a disabled teenager’. This was followed by a workshop on public transport, with a talk from Surrey country council on mobility options, and safe ways to travel and plan ahead. Tips included checking on google maps ahead of time to assist in working out if there were any obstacles for wheelchairs on the route.

Wednesday involved a trip into Guildford for some retail therapy, with the journey planned out in advance by the teenagers, followed by a swim in the hydrotherapy pool and a movie night.

On Thursday the group visited Princess Alice hospice, to learn about adult hospice care and the differences they would encounter using it. They enjoyed visiting the hospice and learning about the range of activities available from the helpful staff, but realised there would be some changes as well – one big difference being the lack of a hydrotherapy pool, as currently hydrotherapy is not funded by adult social care.

The final event on Thursday was the quintessential trip to the local pub (courtesy of our accessible minibus).

Giving their feedback after the event, the young people were happy to highlight what had went well, and what they would like to see improved for next time, as well as other plans for the future, including being involved in transition planning as part of a new transition council, and planning a group trip to a festival.

This bespoke support is only possible thanks to the generosity of our supporters – please consider donating.