Suffolk: Supporting women with learning disabilities with sexual and reproductive health

Suffolk is embarking on a year-long project to improve the sexual and reproductive health support that women with learning disabilities receive. It will involve a series of workshops, which will then be turned into videos to improve the knowledge and experience of women from this community.

Women with learning disabilities ‘poorly served’

Last year Suffolk County Council carried out a review of sexual and reproductive health for women across the county. More than 40 women were interviewed as part of the investigation.

The review found, in general, women in Suffolk achieve good sexual and reproductive health outcomes when compared to the population of England as a whole.

The rate of admissions for reproductive health problems such as pelvic inflammatory disease and ectopic pregnancy are significantly lower than the England average, with the admission rate for ectopic pregnancies being the second lowest in the East of England region.

Suffolk is also a low prevalence area for sexually transmitted infections, while the abortion rate in Suffolk is 13.2 abortions per 1,000 women, which is significantly lower than the England average.

However, the report said this overall picture may mask some of the challenges women face in accessing services and information that can support them in achieving good sexual and reproductive health outcomes. One group stood out as being particularly poorly served – women with learning disabilities.

‘I thought I was dying when I got first period’

The review said for this group of women, education was so lacking that for many there was a feeling of fear and isolation when menstruation starts as they had no awareness of what was happening to them.

One woman with learning disabilities who gave evidence said: “I was the first one out of my friends to start. I remember when I first started, I was sent to a room [at school] for my behaviour which I now know was PMS. I went into the toilets and saw loads of blood and thought I was dying”.

Health Improvement Commissioner for Sexual Health Fiona Dwyer said:

And this is just the start – all the way through the life-course we found women with learning disabilities were poorly served.

“The assumption of many professionals and carers is that women with learning disabilities are not sexually active and therefore reproductive and sexual health conversations are often skipped. The evidence also shows that women with learning disabilities reach menopause earlier, but they are completely underprepared for it.”

The report recommended an education and awareness-raising programme be run specifically for people in the learning disability community.

“This is not just about the individuals with learning disabilities themselves,” said Ms Dwyer. “It’s about supporting their parents and carers and the professionals that work with them.”

Workshops and videos

Work started last year with ACE Anglia, the local specialist organisation commissioned to provide support to people with learning disabilities, developing a series of sexual health easy-read booklets.

And now ACE Anglia has just launched a year-long project to run a series of workshops and develop videos on key topics, commissioned by Suffolk’s public health and communities directorate.

The project started in April 2022 and runs until the end of March 2023.

ACE Anglia has a network of self-advocates, people with lived experience of learning disabilities, who will be helping to run the programme.

The workshops will also be supported by local services with the idea that experts in the field will provide information, prompting discussion about the issues between all involved.

There are eight key themes that have been identified to be covered as a minimum in the workshops and videos. They are:

  • Healthy relationships
  • Sexual health
  • Periods
  • Menopause
  • Hormones
  • Cervical screening
  • Breast and bowel screenings.

Ms Dwyer said: “The aim of the project is to co-produce something that will provide more support around sexual and reproductive health for women with learning disabilities. We want to improve access to resources for people with learning disabilities and improve the pathways between local services to support people with learning disabilities.

“We think it will become a virtuous circle where all sides learn – carers, professionals, those running services and people with learning disabilities. And the fact we will have a suite of videos afterwards will provide it with a legacy. It should have a significant impact across the board.”

Contact details

Alison Amstutz, Head of Drugs and Alcohol and Sexual Health, Suffolk County Council: [email protected]