By Mencap
We are fearful of the consequences of writing about our daughter. We shouldn’t have to be but the reality is different. However, we still want to tell our story, so we will do it anonymously.
We have endured nearly 10 years of separation as a family and experienced trauma and agony deeply. Our daughter was in a hospital featured on the recent Dispatches programme initially when she was still a child, and she was then moved into different hospitals.
In the last hospital she was in before she was discharged, face-down restraints were used very often. It took a long time to get her out of hospital. She was discharged into a
community
A community is the people and places in an area.
placement where the care provider used a very similar model of care to the hospital. The professionals involved had insisted on this sort of model.
We were constantly blamed for every incident despite my daughter being completely under their care. We were treated so suspiciously having our bags checked even though it was supposed to be supported living
Supported living is when you live in your own home with support from staff. People who live in supported living have a tenancy agreement. .
Physical restraints on the floor happened frequently, often involving 5-10 staff team members. My daughter ended up being readmitted to a mental health hospital after a big meltdown because she wasn’t being supported in the right way. Our voice wasn’t heard at all.
Looking back, we find it hard to understand how her so called treatment and care in hospitals was ever meant to help her to cope. She is autistic and has a
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.
- not a mental health condition. Our daughter went from never self-harming pre-hospital to frequent, almost daily self-harms now after so many years of the trauma caused by wrong care and treatment, which has cost millions of pounds of public money as well.
We have to say that in the current hospital my daughter is in, she has received far kinder help from the team. Hospital is the wrong place for her but they have made a lot of effort to make her care as least restrictive as possible and we, her family, have been treated far better. We hope to move on soon with community care. However movement is still quite slow currently.
We want our daughter living in the community as soon as possible. At the moment we are concerned as some other families we speak to have had the same experience as we had - where their son or daughter has moved from hospital into community care which is very like a hospital with its restrictions and way of working. This is not proper community support. We don’t want our autistic child to receive a life sentence of institutionalized care forever.
Hopefully professionals can listen to the voice of families and we will have a really good care plan for the community soon, and after such a long time in institutionalised care we can have our normal life back again. We want her to be able to have an education
Education is when you learn things. When you fill in a form to get a job, education means you write where you went to school, college or university. and get life skills back after being institutionalised for so long.
We still feel frightened to express our opinion fully. We are traumatised and distrustful now ourselves although we try very hard to trust and work together with professionals.
We want a natural life, not an institutional life for our daughter in the community. Time together to heal and cope with the trauma we have all suffered and to have support to move forward as a family, not a broken family with broken hearts in future.