Supporting sexual health and relationships for people with learning disabilities

In relationships, sex and sexual health, people with disabilities often face barriers that prevent access to information, support and opportunities. Claire Lightley is Head of Training at sexual health charity, FPA, managing a team of trainers delivering courses around the UK. We spoke to Claire about FPA’s programme of work supporting professionals who work with people with learning disabilities.

What led FPA to focus on the rights of people with learning disabilities?

We’ve been doing this work for more than 30 years. When we started, people with learning disabilities mostly lived in institutions. The work FPA did was different at that point – we were partly responding to the sexual abuse that went on in institutions and, at first, our work was based around risk, abuse, assessments and supporting people who had been abused.

Glossary

consent

A patient’s agreement to take a test or a treatment. In medical ethics, an adult who has mental capacity always has the right to refuse. 

capacity

In discussions of consent for medical treatment, the ability of a person to make a decision for themselves and understand its implications. Young children, people who are unconscious and some people with mental health problems may lack capacity.

range

The spread of values, from the smallest to the largest. The inter-quartile range (IQR) only includes the middle 50% of values and measures the degree of spread of the most common values.

Over the years, our work has evolved. I started here 18 years ago, having previously been a care worker for people with learning disabilities. I joined FPA to work on a project to develop a training course for professionals with the aim of focusing much more on the positive aspects of sexuality. It talked about risk and safeguarding (protecting the health and rights of individuals, especially protecting children and vulnerable adults from abuse and neglect), but the aim was to focus on pleasure. That reflects the tone of our work now.

Learning disability work is a massively important area for FPA. We have a lot of experience of supporting people with learning disabilities directly and we’ve written many publications supporting staff in this area. We would never sit down and look at a five-year plan or think about our mission without including learning disability work. It is really at the forefront of what we talk about.

How do you support professionals working with people with learning disabilities around sex and relationships?

We offer a range of resources, including the ‘Talking together’ series of books, which is popular for work with younger people. We also developed a DVD called ‘All about us’, which is a programme that professionals can support adults with learning disabilities to work through, either in group settings or on a one-to-one basis. That’s used widely in schools, colleges and care settings.

We offer policy writing, so we often go into organisations and help them to write a sex and relationships policy. It’s really important for the safety of the clients and for the staff.

We also offer an open programme of training. For example, there is an introductory one-day course in which we look at policies and case studies and we cover basics like the law, safeguarding, and capacity to consent.

Twice a year, we run a more intensive five-day course. Throughout the first four days, attendees plan, develop and practise a piece of work that they want to deliver with people with learning disabilities. Then they go away and deliver it, write it up, and they come back and do a presentation and assessment on the fifth day. It’s a hugely popular course – it’s always full.

What kind of issues are highlighted by the people you train?

Masturbation always come up. We run a really popular one-day course focused on masturbation. It’s probably the one thing we get most enquiries about in terms of our work around learning disabilities. Any service working with people with moderate to severe learning disabilities will have some issues with masturbation – public masturbation or people hurting themselves trying to masturbate. We look at risk, safeguarding, and consent, but we also look at how you teach someone about public and private, and how you teach someone about masturbation. Some of the people they’re working with might never have a sexual relationship with someone else, so we get people to really think about pleasure for people and what that means, within the law and safely.

Issues around how to work with parents come up a lot, particularly when people are working with adults. Some professionals are very worried about doing this work and then a parent being upset or angry that their child has been taught about sex and relationships.

The other thing that comes up a lot is access to opportunities for people with learning disabilities. Attendees might tell us that the people they work with don’t have the opportunity to meet other people. We often talk about creating opportunities and we also talk about dating websites and apps, because some people with learning disabilities are using them.

What does good practice look like for services working with people with learning disabilities around sex and relationships?

Relationships and sex education (RSE) is going to be statutory in the UK from 2020. That means every school, including schools for pupils with special educational needs, will have to include RSE on their programme of work. My hope is that schools will really look how they can incorporate it – not just once a term, so if you miss it you don’t get the information, but look at how it can be delivered in bite-sized chunks.

In terms of RSE, good practice is repeating work. It’s having something consistent, ideally weekly, every term, so young people have a chance to really think about things, discuss things, ask questions, and have information repeated. It is so important for people with learning disabilities that work is repeated and to have a chance to go over things.

In care settings, often what happens is that these issues are only looked at when there’s a problem. We would like to see professionals being more proactive, for example in setting up groups for people, and not just holding one session on sexual health, but covering the whole area of relationships.

What can sexual health services do to make clinics more welcoming to people with learning disabilities?

Over the last couple of years, we’ve worked with two London hospitals, one in Kingston and one in Hackney, and we’ve helped them to make their sexual health services more suitable for people with learning disabilities.

Largely, the things they changed were often around environment and timings. For example, making sure that people with learning disabilities had an hour-long appointment, rather than the 10 to 15 minutes you would usually get with a health professional. Because of the way you have to explain things, people need much more time.

We helped the services to think about the environment of their clinic too. When you walk in, what’s happening in the service, is it noisy? Quite often there are televisions on in the waiting room of clinics, but a lot noise can sometimes be difficult or disorientating for someone with a learning disability. Both of the services decided to hold clinics at different times than they usually would, so there wasn’t anyone else in the building and it was much quieter.

We gave the staff some training around what it might feel like to come into a clinic with a learning disability. We also ran training around visual materials, how to use them and how to describe things to people with learning disabilities.

What do you think is the impact of the work you do?

Hopefully we make some professionals think about sex and relationships as not just being something that’s risky, but as something pleasurable – and realise that we should be talking more about pleasure and promoting that for people with learning disabilities.

Although sex is important and we talk about that very openly, we also promote the importance of relationships for people. Mencap use this statistic: only 3% of people with a learning disability live as a couple, compared to 70% of the general adult population. I hope the work we do helps to change mindsets, and highlights that people with learning disabilities can have relationships, they just might need a little bit more support to do it.

For more information on FPA and its services, visit: https://www.fpa.org.uk/

This eFeature appeared in the December 2018 edition of the Eurobulletin.