UK children’s palliative care charity, Together for Short Lives, has launched a new guide Young Person’s Guide to Personal Budgets in England, designed to help seriously ill young people to have more choice and freedom in how their care is delivered.

The new e-resource is written for young people with a life-limiting or life-threatening condition and may be considering a personal budget. The easy to use guide aims to help young people decide if a personal budget is right for them. Using simple and clear language the guide explains what a personal budget is, the different ways they may be funded and managed and how they can be used. Leah, Heidi and Chris – three young people who understand the complexity of having a personal budget – help you navigate the guide – sharing their personal experience of taking control of their lives and making the most of personal budgets.

The guide was written for Together for Short Lives by In Control, a charity which works to build a society that includes everyone equally.

Leah, aged 24, has had a personal budget since 2008, she says: “Overall the personal budget is the best thing ever to happen for me. It gave me the freedom and means to explore life just like other people my age. It allowed me to find myself and learn to be the person I am today. I have always had a determination to do what others have done and the personal budget has allowed me to do that. It has given me the independence I craved and allowed me choice and control for the first time in my life.”

Lizzie Chambers, Development Director at Together for Short Lives, says: “Young people with life-limiting conditions, like all young people, just want to get on with their life, achieve their ambitions and live life to the full. Sadly these young people can struggle to get the care and support that’s right for them. Personal budgets can give young people more freedom; help them have more control and more choice. The Young Person’s Guide to Personal Budgets in England has been written for young people with their needs in mind and aims to help them decide if a personal budget is right for them as well as answering any questions they may have.”

Nic Crosby, Director, Children and Young People at In Control said: “It has been great working with an organisation so committed to making young people’s voices so central to their work.  This resource is a real example of co-production in action and a very valuable addition to information about personal budgets for young people.  The real life stories from Chris, Leah and Heidi bring to live how personal budgets can have a really positive impact on the support young people are receiving, their lives and the lives of people who love and care for them.”

James Sanderson, Director of Personalisation and Choice, NHS England said: “Having choice and control over decisions about our health is important for us all, but for young people living with life limiting and life threatening conditions it couldn’t be more important. I’m delighted to welcome this excellent new resource for young people and their families, which clearly explains how health, social care and education can work together in a personalised way that puts them at the centre of their care, with the option of the flexibility that can be offered through a personal budget.”

The guide complements the series of briefing papers from Together for Short Lives on personal budgets developed for professionals and parents with In Control in 2014.

The Young Person’s Guide to Personal Budgets in England can be downloaded for free on their website here.