Helping young people make their wishes known
Advances in treatments mean that more children are growing up and surviving into adulthood with life-limiting conditions. This means they are leaving children's services behind and "transitioning" into adult services. For many, it will mean that they are forming their own opinions about how they want to live, and equally importantly, how they might want to die.
However, talking about the future and end-of-life care is extremely difficult for everyone - the young people themselves and those who care for them. Little attention has been paid to the views of young people about this issue. This has resulted in a lack of resources and support for young people who wish to think about this issue but do not know where to turn.
It's also important to help young people with life-limiting conditions make the most of every opportunity they have, so they can feel that their lives have had purpose. This includes making sure their wishes for their deterioration, death and funeral are articulated and acted upon. Young people must have the chance to say how they want their life to be remembered and celebrated.
This is why Roald Dahl's Marvellous Children's Charity is working in partnership with Together for Short Lives on a project to produce a toolkit about end-of-life support for young people.
The project aims to reduce the taboo and make it easier for terminally ill young people and their carers to have more open conversations about dying, death and bereavement. The toolkit will also help each individual young person come to terms with the fact that their condition is severe enough to shorten their life.
This is an innovative piece of work, which has not been undertaken before because of its difficult and sensitive nature. It is an area of professional practice that even those working in palliative care find difficult. Together for Short Lives will be working with The National Council of Palliative Care (NCPC) for their expertise and advice.
Initially, Together for Short Lives will invite young people and others with personal experience to contribute and form a small advisory group to guide the project. The various groups will then be gathered together to share their views, including through workshops and discussions (both in person and online). All contributors will be supported thoroughout.
Together for Short Lives anticipate the resulting toolkit will be 10,000 printed booklets (and available to download). It will be freely available to young people, family members, professionals supporting young people and all the services dedicated to providing different aspects of their palliative care.