“When other people try to understand”: exploring the experiences of people with intellectual disabilities, who also have mental health problems

Recent guidelines from the National Institute of Health and Care Excellence highlight that service users (SUs) with intellectual disabilities and co-occurring mental health problems rarely get the opportunity to share their experiences of mental health services. Over the past 20 years, policy documents have stated that these individuals (SUs) must be included in decisions about their care. Research suggests that often this is not the case. Therefore, this paper aims to create a space for SUs to share their experiences of mental health services, and what they found helpful.

A focus group was held with five SUs, two psychologists and two researchers. The audio recording of the discussion was transcribed and analysed using thematic analysis.

Three main themes were identified, namely, “relationships with others”, “inclusion and communication” and “challenges”. This focus group highlighted that although some SUs felt supported, they reported having little control in their lives and wanted to be listened to.

Including a SU in the planning and facilitation of the focus group would have made this research more inclusive.

The implications of this research suggest that by listening to and involving SUs and developing more person-centred services, recovery rates may increase as the services provided would be more targeted.

Very little research has previously been conducted to explore SUs’ experiences. This paper highlights the value of being heard and the knowledge that is often lost if the authors do not take the time to listen to the people for whom a service is designed.