I'd never thought of myself as an activist An activist is a person who campaigns to bring about change. , but I suppose I am – I had to fight and fight to get my brother Elliot home.
Elliot began self injuring himself, and we were extremely concerned for his welfare. We spent a huge amount of time trying to get the community A community is the people and places in an area. teams to support and listen. They didn’t do that, and he ended up being sectioned in 2018. He went to a Psychiatric Intensive Care Unit (PICU) ward as no learning disability A learning disability is to do with the way someone's brain works. It makes it harder for someone to learn, understand or do things. wards were available. I was told by Elliot’s community nurse it wouldn’t be for long, they would review his meds and he’d be in and out.
Unfortunately, that wasn’t the case. He was in a mental health hospital for 4.5 years.
The fight to get Elliot out was the hardest fight I have ever been in. No matter how hard I tried, what we were saying was falling on deaf ears. Elliot was harmed, misunderstood and segregated.
It wasn’t until we got a human rights Human rights Rights are the things everyone should be allowed to do like have a say, or go to school. are the rights that everyone has. These include the right to go to school and the right to start a family. and community care solicitor and I started working with the media that people really began to listen. The trust took it very personally when I first spoke out and treated me even worse than before but I just kept going, for Elliot.
We were ignored and made to feel that we had no idea although we had over 20 years experience and know Elliot better than anyone. The more they got it wrong, the more distressed Elliot became which then increased the risk followed by restrictions which affected his human rights.
All we wanted to do was help build the right support for Elliot so the self injury was reduced or even stopped completely. Elliot had a really awful time in hospital but look at him now – the difference of a home not a hospital really shines.
We aren’t the only family to have been in this situation – when I wrote this blog, over 2000 people with a learning disability and autistic people were in mental health inpatient hospitals. Many others have been affected over the years, just like Elliot.
The myth A myth is an idea about something that is not true. I’d like to bust this Learning Disability Week is that there is no other option than to keep sending people into Assessment An assessment is a way of finding out what help a person needs. When you have an assessment, you might have to go to a meeting or fill in a form. and Treatment units - we should be building the right support in the community including bespoke homes instead of sending people 100’s of miles away from their families into ATUs.
Become an activist in your local area
You'll be making a difference to the lives of people with a learning disability, their family members and carers.
Talk to your local Mencap activism Activism is taking action to make change. Going to a campaign event with others, writing letters and speaking up are all ways to take action. coach today!