Medications and My Mental Health

Research team: Sue Caton, Jodie Bradley, Dawn Cavanagh, Umesh Chauhan, Vicky Farnsworth, Chris Hatton, Christine Hutchinson, Mark O’Farrell, Alison Owen, Robert Parkin, Matty Prothero, Nathan (Nemo) Rawcliffe, Jodie Rawles, Francesca Ribenfors, Katherine Runswick-Cole 

Why did we do the project 

People with learning disabilities are more likely to take mental health medications compared to other people. We do not know very much about what people with learning disabilities about this and what might help people to become more involved in decisions about their own mental health medications.  

What we did:  

This was a co-produced project. People with learning disabilities, family members, paid carers and prescribers took part in interviews and filled in a survey.  

What did we find out?  

People with learning disabilities knew a lot about the medications they took but many people did not know why they were taking them. When a mental health issue was new, family members usually knew a lot about the medication but if people took medication for a long time, people stopped asking questions about it. Paid carers knew a lot about medications but did not always feel confident about the responsibility of looking after them. Doctors or nurses usually made the decisions about medications and people with learning disabilities did not always feel supported to be involved. People with learning disabilities said they were usually given printed information about their mental health medications that was not easy to understand, but prescribers said that they give information in accessible formats.  

What have we made?  

At coproduction workshops, groups of people with learning disabilities and supporters helped to make a toolkit of information and resources to support people with learning disabilities with decisions around their mental health medications. The toolkit is on our project website.