My friend Leo Andrade-Martinez has launched a campaign to bring her son, Stephen (19) closer to home. Stephen is currently at a psychiatric ward in St Andrew’s hospital in Northampton which is 80 miles away from his (and Leo’s) home in Islington. Here is Leo’s petition (please click HERE to sign it):
I want my son out of a mental health unit and to be near his family. We have to travel hundreds of miles each weekend to see him and sometimes we only see him for a few minutes; sometimes it’s not even that.
Firstly, Stephen was at Acorn Park Residential School in Norfolk for two years.
Last year in February Acorn Park told us that they could no longer provide care for Stephen resulting in us only having 2 weeks to find Stephen a new placement. There was none to be found in that short period of time.
Therefore Social Services told us that the best place to put my son would be at St. Andrews. We were assured at the time that it was an autism unit. We were also told medications would be stopped along with a special diet, psychological intervention and therapy being put in place.
Needless to say none of this happened.
He was put in a self-harming ward, not an autism specialist unit. It also turns out that they do not have an autism unit for over 14s, so he was placed with drug addicts, alcoholics and god knows who else. There are no late teens in his ward.
All individuals on the ward are aged over 25 to late 40s; the place gives me the creeps.
Stephen is locked up 24:7. If my son is not having a good day or is unsettled they won’t take him out into the grounds, this is a huge space which Stephen would love. He goes for weeks and months without going outside into the grounds. For the past 15 months he has not been taken out into the community.
His social life is non-existent. If Stephen has a meltdown 4 to 5 people jump on him to restrain him. Sometimes this is up to 5 hours.
We travel for 1.5 to 2 hours depending on traffic and if Stephen is having a bad day they will not bring him downstairs. We either have to go upstairs and sit with him in a crowded office room, with only one parent present as we have our little boy Joshy with us; children are not allowed into the building. What is even worse is that we sometimes travel all the way to visit him, only to be told that we are not allowed a visit.
I know that Stephen is very unhappy there, although the staff appear to be generally friendly and appear to be nice people, I don’t know any of them by name and it’s always a different person on duty, Stephen hates that. I think it is difficult for them as they have no knowledge about autism and because of this can make you feel guilty for your child’s behaviours. My son still talks about Norfolk and asks for his old carers by name one by one, I actually feel the same way about them as they were amazing. It breaks my heart when he says, “mummy, Ste go home with mummy. Ste no here”, that’s how he speaks. He gets very sad as we are about to leave.
So what do we want for Stephen? We want him out of the Mental Health Act. We want him to leave St. Andrews which should not be a problem as they agree that the hospital is not the correct setting and environment for him. We were told back in February that we needed to find Stephen a long term Autism Specialist Residential placement.
However Islington Adult Social Services are not helping and have made no attempt to find a solution.
So a month ago I was extremely upset, why haven’t they tried? A new social worker came out to see us and said that they thought my son should go “one step down the hospital”, whatever that means! I said no. What is it that they are going to do that St. Andrews could not?
Their answer was to say, “Leo keep an open mind.”
Their broker has found two possible placements, but again nothing has been done about this so far and she has now retired. Tom emailed me to say that the London hospital is going to approach St. Andrews to do an assessment, however I am not convinced. The only good thing is that it’s a London tube ride to that hospital, but still I don’t want Ste to go there.
So now to Living with Autism and their possible placement, it sounds a good place, it sounds it might suit him, but I have reservations because it’s in Lincolnshire which is even further then Norfolk and Northampton.
The good thing about this though is that Islington thinks it’s too far, so far so good, but yet they themselves have no further ideas and of course they told me they don’t want an outsider like Living with Autism to find the placement. I am not sure what to think of that.
We of course want Stephen to be nearer us so that we can visit more often but of more importance is that we want Stephen to have a better quality of life, this is his basic human right. Being in a psychiatric hospital means that he is mostly locked up, he is not allowed out into the wider community and this means that as a young man with severe autism his human rights are not being met, in fact thy are being violated.
I don’t want my son to be in a mental institution. My son and so many other sons and daughters are put way in these horrible places and drugged up, without so much as an offer of help or therapy. My son is not mentally ill, he is autistic.
So I call on the NHS, Social Services and the Prime Minister to stop this horrible situation that we all find ourselves in. I don’t want to see another parent suffering like me, not being able to see my son when we visit.
We also call for Section 3 of the Mental Health Act to be changed so as to give autistic people more freedom and not to be treated as mentally ill.
So to conclude, what do we feel we want for Stephen? We want a placement in a rural area with a country feel to it, like Hertfordshire or London Barnet Potters Bar, but this is no easy task.
Ideally we want the placement to be within 35 to 40 miles, so that we as a family can be close to him and see him more often. We are not asking for much.
Please help my family but most of all help my son.
If I were to become a genie, I would grant my friend Leo’s wish straight away. You can also do so by signing her petition and spreading the word. Please click HERE.