01 Dec 2015

New guidance challenges myths on sex and relationships for young people with limited lifespans

New guidance on relationships for young people

New guidance on relationships for young people

Assistance for supporting young people with life-threatening or life-limiting conditions who want to explore their sexuality and develop relationships is offered to practitioners in a new comprehensive OU-published guide in partnership with the charity Together for Short Lives.

The publication, launched this week, gives guidance and standards for health, social care and education practitioners who support young people with life-limiting and life-threatening conditions (LLTCs).

Talking about Sex, Sexuality and Relationships: Guidance and Standards is published by The Open University in partnership with UK children’s palliative care charity Together for Short Lives and the OU Sexuality Alliance. The guide has been developed with young people, local and national organisations to help break down taboos around disabled young people and sexuality and to help professionals develop communication skills and confidence in exploring sexuality for these young people both safely and legally.

Launched today (Tuesday 1 December 2015) the guidance aims to boost the confidence of practitioners in talking to young people about intimacy and their sexuality and help organisations to provide robust governance and better understand the legal framework. Importantly it encourages organisations to provide training so practitioners are equipped to support young people to explore their sexuality safely and legally.

More than 25 young people with LLTCs contributed to the report. Two of the young people, Hameed Jimoh (Junior) and Lucy Watts jointly wrote the report’s foreword. They said: “Yes, talking about sex, intimacy and providing practical support for young people like us can be challenging, but such discussions shouldn’t be ignored and swept under the carpet. Staff just need training and support.”

Lead co-author Dr Sarah Earle, Associate Dean Research, on behalf of The Open University said: “Young people with LLTCs have the right to experience intimacy and to give and receive pleasure, whether that means being able to hold hands, fall in love, or enjoy sexual expression in all its forms. We have developed this guidance to ensure that this right can be realised by all young people."

Lizzie Chambers, development director, Together for Short Lives said: “The growing number of young people now living into adulthood with life-limiting conditions means that professionals can no longer ignore their right to sexual expression. After all it's just a normal part of growing up and being an adult.

“I hope this new guide will give professionals the confidence to be able to talk to young people about their sexuality and that this will in turn empower young people to have relationships and have a good sex life if that is what they want.”

The report is being launched by Dame Elizabeth Fradd DBE, University of Nottingham and an independent health service adviser, in London. A free hard copy of the Guidelines and Standards will be available at the launch or on request and additional copies on The Open University Sexuality Alliance portal which is currently being developed at:

Notes to editors
For media enquiries on the report and interviews with academics contact the OU Press Office on 01908 654316 or mobile 07901 515891

For media enquiries for Together for Short Lives contact: or on 07775336460
The Open University Sexuality Alliance was formed in 2013 with the key purpose of developing sexuality guidance and standards for health,social care and education practitioners working with young people with life-limiting and life-threatening conditions (LLTCs) and their families.The Alliance is a collaborative partnership which brings together representatives from public sector organisations, charities, service users and academics with an interest in providing holistic care for young people with LLTCs. Today we invite you to celebrate the publication and launch of the guidance and standards.

About Together for Short Lives
Together for Short Lives is the leading UK charity that speaks out for children and young people who are expected to have short lives.
Hearing the news that your child is likely to die young is devastating. For tens of thousands of families in the UK this is the reality. These children have very complex and unpredictable conditions and often need round-the-clock-care.
When children are expected to have short lives, we are here to help make sure they have as full lives as possible and to help families make the right choices about their child’s care.
Together with everyone who provides care and support for these families, we will drive change to help these children and young people have the best quality of life and the best quality of death. We can’t change the diagnosis, but we can help families to make the very most of their time together.
Together for Short Lives on Twitter
Like Together for Short Lives on Facebook at

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