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Every adult has the right to be sexual and free to express their sexuality. Every adult, that is, except possibly those with learning difficulties, for whom sex and sexuality to an alarming extent remain steadfastly taboo and which are thus denied, avoided or "forgotten".

In 1998 a group of staff in Surrey Oaklands NHS Trust and Croydon social services agreed to work together and challenge traditional "ignore it and it will go away" thinking, and set out to make sex and sexuality part of everyday planning for people with learning difficulties. Critically, they realised early on that if the scheme was to work it needed to be rooted in active support to bring paper policies and procedures into the lives of people.

This resulted in the creation of the active support network, which provides mentors for service users, parents and staff. Trained by the project co-ordinators (although other staff have since taken on the training role as well), mentors give advice, support in making choices and help with action planning. The network also organises meetings and newsletters.

At the heart of this positive work is the excellent workbook People, Friendship and Sex. This illustrated guide covers the main areas of sexuality for service users, including relationships, touching, feelings and sexual touch. It opens by stating: "This book can help all of us understand about people, friendship and sex. Reading it should make you feel safer about making choices."

Mentors work through the guide and encourage discussion and explore ideas with users. "It’s primarily an assessment tool for the mentor," says Andrew Slegg, project co-ordinator. "It also helps raise awareness of differences, of interacting with friends and other people in society."

It was equally important to raise awareness of the potential dangers. "We wanted all staff to recognise signs of possible sexual abuse and respond appropriately, and for all service users to know how and when to say ‘No!’, and who to tell if something is happening they do not like," says the project’s consultant, Adam Abdelnoor.

"Quite often, if staff don’t know what to do, they do nothing," adds project co-

ordinator Caz Clarke. "One of the messages we’re trying to get over to staff is that you might not want to deal with it but you have got the responsibility - especially if somebody is at risk."

Dealing with things openly has been the right way, according to mentor Andrew Samuel. "We’re there to say that it’s all right to do this, but you need to do it in this way. For one person, all his issues were sexual - because nobody had ever talked about sex," he says. "We see sexuality as part of loving relationships, good health and normal adulthood. Make people better informed and they make better decisions," Abdelnoor adds.

The mentor training begins with a two-hour introduction, which is followed up by two days - and it’s proving very successful. "We’ve changed people’s opinions and values," says project co-ordinator, Margaret Dorney. "More informed, more educated, they’ve gone back to their workplace and treated people with learning difficulties in a more positive way."

"This positive change in the staff must have a knock-on effect on service users," adds Slegg. Dorney continues: "Service users do look upon staff as role models: our opinions, behaviour and the messages we give are very important."

The move is now towards training parent mentors and keeping the momentum going outside social and health care environments, says project co-ordinator Maurice Kennedy. "It’s important that ongoing support systems are there in terms of parents and carers, so that knowledge and learning is reaffirmed and continued," he says.

The active support network’s refreshing and honest work has pulled a once-buried head clean out of the sand. No longer mysterious and confusing, sex and sexuality for people with learning difficulties in Croydon are increasingly becoming as everyday as diet and hygiene. "It’s life, isn’t it?" says Clarke.

- More details from Phil Boulter 01883 383838 or Martin Mulvey 020 8688 9305.

Background

Scheme: Active support network

Location: Croydon, London

Staffing: Project consultant, six project co-ordinators and senior management time

Inspiration: To make sex and sexuality part of everyday planning for people with learning difficulties

Cost: £19,500 a year plus matching amount of staff time - originally grant funded for three years, now part of mainstream services