THE BLOG

Please, No More Broken Promises: No More Broken Families

23/03/2015 17:27 GMT | Updated 23/05/2015 10:59 BST

My name is Leo and I have three wonderful children; Jamie 23, Stephen, 20 and Joshua, eight.

For almost two years, Stephen was locked up in an assessment and treatment hospital in Northampton, which was over 60 miles away from his home with us in Islington. Stephen's crime? He has severe autism and a learning disability.

While he was there Stephen was so dosed up on inappropriate medication - including drugs for epilepsy, which he doesn't even have - he started to lose his ability to speak. Not once in two years did he leave the compound, so I am not being dramatic when I say my son was a prisoner.

All I ever wanted was the support to care for my son at home; some help to manage episodes when his behaviour became challenging. Eventually I got tired of fighting quietly. I started a petition on Change.org which received over 10,000 signatures. As a result, in January this year, Islington Council agreed to move Stephen to a hospital in Colchester, which is much closer to our home. It's a compromise, but it's better than it was - they phone and ask me questions about Stephen; what he does and doesn't like, what foods he'll eat and that sort of thing. I like them asking because it means they care. The positive thing is that they do take him out - he is no longer trapped between the same four walls.

The issue that remains is that they haven't done anything about the drugs yet; the levels are still really high. Even now, when I go to see my son, he falls asleep in my lap. His finer motor skills are totally lost, he trembles so much he can't even hold his fork and he drags his feet along because his body is so weak. To see my son so yellow and so sad is not the Stephen we know.

Stephen was always a very smiley boy but he no longer smiles, he no longer laughs. He was such a joker. He'd look at you and decide on a new name for you, usually an animal name. So he might call you an elephant or zebra or something like that and he'd start laughing his head off. And then he'd touch your face, very gently, like he was seeing your face with one of his favourite animals. For some reason I am 'mummy gorilla'!

I feel incredibly guilty for sending my son away; for him to be so unhappy, to suffer so much pain. I've been told over and over, even by my own priest, that I couldn't have known what would happen. But it doesn't make me feel any better at all. The pain of a mother when her child is suffering can be too much to bear.

It's been a year since Stephen last saw his little brother because Josh is not allowed to visit. They were very close before and Stephen was so protective; he would ask me to take Josh away if he felt a meltdown coming on. "No Joshy", he'd say. Because it's been so long since they saw each other, I think Josh is getting to the point where he's losing interest in his big brother and it upsets me so much because I don't want the kids missing out on each other. Stephen still asks after Josh.

I don't know when Stephen will be able to leave this new place. We were told about nine months but they were very cagey on that. I don't want him there longer than that, I just want him home. I want for us all to move to an appropriate house that meets his needs and have a full, bespoke package of care. It will be cheaper than having him in one of these hospitals and at least he will be under my roof, back with his family who love him.

There have been a lot of broken promises from the government, who assured us that people with a learning disability and autism, like Stephen, would be moved out of these inappropriate units by June 2014 and back to their families and communities where they belong. But this hasn't happened.

It might seem strange that, despite this lack of progress, I hope that Norman Lamb, the Minister for Care and Support, stays in power. The reason I say this is because he has started an important process and I think he needs to finish what he has started. My worry is that if he leaves the job and another government comes in, they might find something else to focus on and then our kids will be lost to the system.

To the next government, I would say please, please keep driving this work. Help our families, help my friends, help me and don't let our children suffer any more. Find ways for people to keep their families together, where the child is in a loving environment where they belong - and if that isn't compelling enough, remember it's actually cheaper than keeping them in units. They don't belong in these places where no one can possibly care for them as we do.

I am supporting Mencap's Hear my Voice campaign because it allows us to say to all of the people in power, and the people who might come into power, "hear our voices". At 3pm today (24 March), I will be joining Mencap and a group of families at Number 10 Downing Street where we will hand over Stephen's petition along with four others totalling close to 250,000 signatures calling for our loved ones to be returned home from assessment and treatment units.

The system often ignores us, but I want to say "hear us, hear the parents, we are important people for you to listen to. Do not wait for a doctor or psychologist or social worker to tell you because they don't know our children like we do." I would ask whoever is listening to speak to us parents. We are the best people to teach you about what is happening to our kids.