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I am a person with a mild learning disability.
I am an expert advisor currently involved with a major programme of work aimed at improving healthcare for people with learning disabilities.
It is important to get this right and that means listening to and involving people like me. I can bring my experience and understanding of others’ needs to the project so we can tackle what is really important to people.
One of the projects I’m currently working on is how people with learning disabilities, autism, or both, can be wrongly prescribed psychotropic medication. This kind of medication is very strong and affects a person’s mind – people have talked about feeling “out of it” when taking some of these drugs.
I just want to give a bit of background about my experience of working with people with learning disabilities, autism or both:
Before working at NHS England I worked for a company called Dimensions. They support people to live in their own home in the community. I was a quality auditor visiting people and spending time with them talking and seeing how they lived, looking at their quality of life.
During my visits I came prepared with set questions. Some of them were about what medicines they were taking, and covered if people understood what they were taking and whether they needed help taking their tablets every day.
In October 2015 I started my role with NHS England, part-time while also working at Dimensions. I remember being involved in a big piece of work to do with Care and Treatment Reviews.
This is where an independent group meets people who are at risk of being admitted to mental health or learning disability hospitals, or are already in these hospitals. These reviews look at the type and quality of care people need, and whether they could get this in the community instead of in a hospital.
Through my involvement in this work, people told me their stories about being over-medicated, but at the time I didn’t really understand what this meant, especially as I am not a trained medical person – a doctor, nurse or psychiatrist.
In 2016, NHS England started the STOMP programme, which stands for ‘Stop over medicating people’ and how it affects adults, young people and children with learning disabilities, autism or both.
I was asked to be involved and co-lead working with Anne Webster, Clinical lead. At first I felt very limited in my knowledge, but I met with several colleagues who are nurses and GPs and I asked lots of question and learnt a lot. For example over-medication can mean people gain weight, have organ failure and can even die earlier. I’ve also spent time talking to the people I represent to understand their point of view. This subject is a really important as it affects people’s wellbeing and the quality of their life.
From my experience I would urge people with learning disabilities to ask questions about the medication they are on.
It’s important that you know what you are taking and why. Do you know the side-effects, or if there is something else you could have in place instead of medication? Do you know you are entitled to annual health checks by your GP?
Get your family, your carer or supporter to help you find details about the medicine you are taking and, above all, don’t be afraid to ask questions.
- Watch Carl’s video
- You can read more about stopping over-medication of people with learning disabilities (STOMP) in a blog by Anne Webster, clinical lead for improving health and quality in the learning disability programme.