UK charity ACT (Association for Children’s Palliative Care) has launched new guidance on sexuality, relationships and sexual health for all those working with young people with life-limiting health conditions, in a bid to open up a taboo subject and to better support these young people to have the opportunity to experience relationships and explore their sexuality, in a safe, supportive and empathetic environment.

In developing this guidance ACT is urging professionals and practitioners working in the field to develop policies, practice and training around relationships and sexual health, and also wants to give parents and carers the confidence, support and resources to help young people explore their sexuality.

The new guidance, Let's Talk About Sex, Let's Talk About You and Me: Relationships, sexual health and sexuality guidance for those working with young people with life-threatening conditions and their families is being launched at ACT’s National Children’s Palliative Care Conference in London on Monday 9 June 2008. 

ACT wanted to develop this guidance to address a major gap in support for life-limited and disabled young people as they explore their sexuality and develop relationships. And many parents of disabled and life-limited young people have told ACT that guidance is really needed as sex and sexuality are issues that are too difficult to talk about with their children. ACT hopes to open up this debate and create an environment where practitioners have the knowledge and confidence to support young people and its new guidance will also help agencies to develop policies and procedures to guide this area of work. 

In developing the guide, one of the co-authors, Peter Wells said:

”The inspiration behind putting the guidance together was - for me - to help children’s palliative care services to help themselves in talking about intimacy, sex and relationships with the young people and families in their care.  Organisations need to be proactive and willing to talk rather than wait for young people to raise the issue and then for everyone to be confronted with an embarrassing silence.”

Talking about the need for specific guidance on sexuality, one young man with a life-limiting condition said: “Nobody really wants to talk to me about sex because they don’t know how, and because they cannot work out why I should be talking about it because I am so ill.”  Another young man, Nick, said “…this is a really important issue for young people and there’s a real tendency to just sweep it under the carpet.”

The guide, Let’s Talk About Sex: Let’s Talk About You and Me aims to:

Provide the family and carers of young people with life-limiting/life threatening conditions, and organisations involved in their care with useful information and other resources about relationships, sexual health and sexuality.

Assist parents and those working with young people to be able to support young people as they develop relationships and their own sexual identity.

Act as a signpost for young people to useful resources.

The guidance is based on the core principle that the welfare of the child or young person is paramount, and emphasises the need to work together to reduce a young person's vulnerability to harm/abuse, while balancing the young person's right to sexual expression and their right to protection.

It aims to explore what parents, professionals and organisations need to know and what resources are available to support them as they in turn support the young person as they develop their sexual, adult identity. As well as providing clear goals and standards for parents, carers, professionals and organisation, the guidance includes signposts to further help, information and resources.

Speaking at the launch, one of the authors of Let’s Talk About Sex: Let’s Talk About You and Me, Corine Koppenol said:

“It’s heartbreaking when a young man who physically can’t hold a telephone wants to speak to his girlfriend. He will never be able to have a private telephone conversation. And believe me this experience was equally uncomfortable for me to be there and to hear their personal conversations: I remember I wished that could make myself invisible! Another young man looked at me in despair and said:’ I can’t even touch or hold her hand!’”

 “Coming from a liberal upbringing I started to look for answers, for guidance to help health care staff and their organisations addressing intimacy and sexual needs of young disabled people and to find the balance within the legal framework. It took a few years of researching and fieldwork but we now have an excellent start with the ACT guidance: ‘Lets Talk About Sex: Let’s Talk About You and Me.”

The new guidance, Let’s Talk About Sex: Let’s Talk About You and Me: Relationships, sexual health and sexuality guidance for those working with young people with life-threatening conditions and their families has been written by Corine Koppenol, Katrina McNamara-Goodger, Trudy Ward and Peter Wells and is published by ACT.

Download a copy here