Planning for sex

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

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

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

“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

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.


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


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