Back in 2011 my husband and I watched a Panorama programme highlighting the abuse of patients with learning difficulties at a hospital called Winterbourne View
At this time, we knew that there was something wrong with Jess, but we had no idea that it was Rett Syndrome. The programme was incredibly distressing. Firstly, because what happened in that hospital was appalling, but also because we had no idea of what Jess's future held, and the idea of her being subjected to such treatment was heart-breaking.
Winterbourne View was a Treatment and Assessment Unit for people with learning disabilities and challenging behaviours. These people will have usually been admitted to these units by law, often miles away from their families and friends.
I can't imagine being a parent of a child where, under the law, all your rights and input into how (and where in the country) you want your vulnerable child (or young adult) to be cared for are taken away from you. And then to find out that they weren't even safe there, or treated with dignity and respect, must be soul-destroying.
Since the investigation into events at Winterbourne View, Mencap have launched a campaign to stop people being moved far away from their families and homes and put into institutions for the purpose of assessment and treatment. This is widely supported by families. However, it is still happening, and their are many examples out there of families in this position. Some examples are of this family, where it was actually ruled in retrospect that the young man's detention had been unlawful. Another tragic example is here, where a young man was admitted to Treatment and Assessment Unit, against both his and his family's wishes. He was known to be epileptic, and it was clearly stated in his care plan that he was not to be left unattended when in the bath in case he had a seizure. Well, he was and he did, and he died.
Since then, another campaign has been launched in this young man's name, trying to change the way people with learning difficulties are treated. You can read more about it and pledge your support here for the proposed LB Bill, which will hopefully be passed in Parliment very soon.
As families of very vulnerable children, a lot of whom are non-verbal and cannot say if anything detrimental has happened to them, we have to trust those who are responsible for their care when we are not with them. This can be carers in the home, at a respite centre, at an Assessment and Treatment Centre, or at school. We often don't get a choice where our children go for these services, and we hardly ever get a say in who is providing any care on an individual level. So imagine my horror when I read this blog about how a 12 year old with autism (and some physical disabilities) was the recipient of a "spit hood" whilst at school. If you don't know what that is (and I didn't, and I wish I still hadn't heard of it), please read the blog. A warning though, it is a difficult read, and I was in tears at the end of it.
Jess is never going to display aggressive or challenging behaviours in the way some children and adults with learning difficulties or autism do, so I feel it is unlikely that she is ever going to be restrained or sectioned under the Mental Capacity Act . There is not much that is positive about a Rett Syndrome as compared with other disorders, but that is certainly one plus.
However, all these examples just demonstrate how very vulnerable our children are, and how dependent we, as their families, are on outside agencies who don't always get it right, and who sometimes get it very very wrong. And that is very very frightening.