"I'd never thought of myself as an activist."

I'd never thought of myself as an activist, 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 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 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 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 I’d like to bust this Learning Disability Week is that there is no other option than to keep sending people into Assessment 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.