Pioneering tool to help families launched at Rainbows

Parents of young adults at our hospice have been the driving force behind a pioneering website to help families across the UK.

The website ‘My Adult Still My Child’, which is the first of its kind, is aimed at parents whose life-limited child is turning 18 and making a transition into adult services. As well as providing a wealth of information, it offers advice about the law, tackles issues around consent and helps parents with decision making.

Launched at the hospice, it has been created by Rainbows, Together for Short Lives, the three clinical commissioning groups for Leicester, Leicestershire and Rutland and NHS England, which also funded the project. The website was produced following questions and concerns raised by parents of young people attending Rainbows who were facing challenges in respect of continued decision-making for their children when they reached adulthood.

Alison Cooke, Director of Care at Rainbows, said: “Increasing numbers of children and young people with life-limiting and life-threatening health conditions are surviving to adulthood and making the transition from children’s to adult services. Life as an adult with a life-limiting condition can be very different to that experienced within children’s palliative care. “We hope this website is a really useful tool for people across the country and I would like to thank all of our parents who have been involved.”

Kimberley Kingsley, Deputy Director of Nursing and Quality at NHS England, said: “This website is a valuable tool for parents because it’s been developed by parents of young children who have previously attended Rainbows Hospice for Children and Young people. These parents faced real challenges around continued decision-making for their children once they reached adulthood. Having their involvement in developing the tool will really benefit other families in the same situation.” Tina Wilkinson, of Leicestershire, is mum to Heidi (20). She was involved in creating the website.

She said: “As a parent, I found the website very informative. It’s really important to have somewhere to go to get the right information, you just have to look at the website and there it is.”