Tell us a little more about the Self-Advocacy group you’re a part of...
We have meetings where we discuss decisions that young people with disabilities can make for themselves. This includes learning about their rights and the capacity to make their own decisions. We also participate in meetings, where we talk about learning disabilities and/or autism.
It’s educating young people to know they’ve got the right to make a decision for themselves. Even if they don’t have full capacity, it’s still about having their voice heard.
It sounds very interesting, what happens in the meetings?
It’s proper co-production work, so as well as myself and other young people with learning disabilities and/or autism, Commissioners are also involved. They’re there to listen, learn, ask questions and feedback so that policy can be changed.
How long have you been doing it?
Since July 2022. They emailed me to see if I’d like to get involved, and it’s been a really brilliant thing to be part of.
We’re going to be training more people too, so like me, they can give a voice to disabled young people and get things changed.
“It’s really fulfilling to be part of making a difference”
Carly
How often do you meet?
We meet up every 3 months via video call. It’s always based on Teams because we all live in different areas, which would be very awkward for all of us to travel to.
The Commissioners go away at the end of the meetings, and we all receive the minutes on what was discussed. Then when we meet up again 3 months later, we talk through what steps have been taken to put those plans into action. We find that a lot of the suggestions we’ve made are put into action pretty quickly.
What issues have you made the commissioners aware of?
A lot of people with a learning disability and/or autism don’t realise that you’re meant to have annual health checks with your doctor. Part of this is because they slip through the cracks and aren’t on the Learning Disability Register. I was one of those people, and I wasn’t very happy at all when I found out.
I was diagnosed with a learning disability when I was 5, but I only went onto the Learning Disability Register when I was 25.
We’ve made the Commissioners aware of this, because it can have a big impact on your health.
You can find out if you’re on the Learning Disability Register by contacting your GP. Read more about the Register here.
How did not having an annual health check affect you?
During Covid, I was never contacted as a vulnerable person. So it meant I didn’t get early vaccinations or health checks, when I should have.
People with learning disabilities and/or autism have weaker immune systems as it is. We also have a shorter life expectancy. This means that regular visits to the doctor are even more important to make sure we stay healthy.
We’ve discussed this problem, and others, with the Commissioners, so that they’re aware of these huge gaps in correctly treating young people with learning disabilities.
What other issues have you helped bring to light?
There aren’t enough dentists who cater for patients with special needs. Because of this, a lot of young people don’t go to the dentist. They might be scared, or there might not be enough support offered to explain procedures to them. It means our dental health can suffer.
I’ve found a terrific dentist near me that cares for patients with learning disabilities and/or autism. I’m recommending them to a lot of my friends because they were brilliant with me! I had root canal treatment done a few weeks ago and that’s quite a horrible treatment. But I did really well, you know, and I’m glad I went.
I was also amazed to hear my tooth is 23mm long. Apparently the next generation have longer teeth, and I’m probably one of them. My dentist’s tooth is 16mm, so quite a difference!
Carly has helped create a fantastic film for us all about her visit to the dentist – you can watch it here.
What’s coming up next for the Group?
Well one of the meetings is going to be in Andover, so I’ll be travelling there in a few months’ time hopefully. I’m actually going to be the Chair Person for that meeting, which will be a review of the Self-Advocacy that we’ve done so far.
It’s a chance to physically meet and have a general chat, but also the chance to see what else we can try and improve.
Do you get any feedback from the impact you’ve made?
Yes, we often get told that the information we’re sharing is invaluable and giving a voice to young people. It’s really fulfilling to be part of making a difference. I’d encourage any young people who want to get involved to reach out to their local NHS team.
Useful resources...
You can check out these useful links for more info…
Watch Carly’s film all about Dental Visits
Read more about Annual Health Checks and how to get them
Find out about the Learning Disability Register
What else to read
