Line 18: 'My autistic son deserves a life but he's locked up'
Here, Pam, from Brighton, tells Sky News about her autistic son Tony, 41, who has lived away from his family for more than 17 years.
Tony was a happy-go-lucky boy growing up. He went everywhere with us, and of course his autism was hard to cope with, but we had a lot of fun.
It all began to change when he was around 13-years-old.
We were advised by his school and the respite services we used that Tony needed to go on to medication. He was difficult to manage and the school didn’t help him.
That was when his personality began to change. Tony never had aggression, he was more aggravating. He was hard work, you had to be on call 24 hours a day. He was also going through puberty so it was a difficult combination.
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No one really knew back then about autism, we had no help or advice. We were just told maybe we should start a support group.
But Roy, Tony’s dad, and I knew how to deal with our son and we still managed to care for him and enjoy a family life. However as we got older we realised that we aren’t going to be around forever so we wanted to make sure Tony had his own home and wouldn’t have to rely on us.
In short, we needed to cut the apron strings.
But it completely backfired on us and I now look back on it as the worst decision we ever made.
Our local authority told us the best thing for Tony was residential care. He went to two other secure units before ending up in the hospital he is in now. Originally we were told it would only be for nine months until the council found somewhere more suitable and that met his needs.
We were absolutely devastated, I didn’t stop crying for a week.
Tony has now been in that unit for 17-and -a-half years. It’s destroyed our family.
He’s over 120 miles away from our home and we’ve been told it’s not the right place for him because his autism means he needs a calm environment, which the wards can’t always be.
People always ask us why we can’t move him out of the hospital he is in now. We wish we could just get him out, but Tony is under section and needs to be signed off by doctors.
That can’t happen until there is the right place for him to go. And at the moment there isn’t anywhere.
We have been told he doesn’t belong to us, he is not our son. I gave birth to him and we are his parents but he doesn’t belong to us, he belongs to the state because they pay the money. We have no rights. That’s what angers me.
His care costs hundreds of thousands of pounds a year. They could have spent that money on the right support in the community and probably saved some too.
Over the years Tony has been restrained, sedated and secluded. He has been held face down and been injured. Black eyes, a broken arm, wrist burns and bruises.
It was absolutely devastating seeing him like that. I’ve cried all the way home sometimes after I’ve been to see him. It’s destroying me. I look out the window and see people going about their happy lives and they’ve taken his away.
We eventually asked for Tony to be given his own bespoke care away from other patients in the unit because his needs were not being met. He was moved to his own annex on the ward and had three staff caring for him.
He has his own bedroom, wet room and sitting area, but he is locked in. We feel he is isolated. Roy and I travel to see him every Thursday, we’ve never missed a visit.
He always asks if he can come home. We always promise him we are doing everything we can to make that happen. And we really are – we just aren’t getting anywhere.
This year we had some hope he might be moved closer to home. A bungalow was found locally to us and work was started to put the right support in place. We were promised he would be home by Christmas.
Tony hasn’t had a proper Christmas in 21 years. Can you imagine not having a Christmas tree in that time?
However, a few weeks ago we learned that the community provider had pulled out of the care and Tony wouldn’t be coming home anytime soon.
Roy is not far off 80, I’m 74, we’re realistic – we haven’t got much time left – we want him to know that whatever happens to us we are not his be all and end all. We want him to feel safe, independent of us.
I feel Tony deserves the right care and support now, he needs a life. That’s the least he deserves after 17 years away from his family.
Some murderers serve less time than Tony has been away for. It’s a broken system. It’s not right that he is so far from his family and the people that love him. He’s lost his human rights.
We’ve walked down thousands of corridors to get help – we’ve never had someone come back and stand up for Tony, someone of importance, and look at what is happening to this young man.
My biggest heartbreak is my life is nearly finished but he still deserves a life – not just Tony but all the others like him too, locked up across the country.
In a statement, Brighton & Hove City Council, in charge of Tony’s care, told Sky News:
“We are acutely aware of the difficulties Tony’s parents have faced in seeing their son over the years and are very sympathetic to their situation.
“Their son’s current out-of-town accommodation is the nearest that offers the specialist care required for their son’s very complex needs.
“This has been kept under regular review by independent mental health tribunals, which take the views of the family fully into account.
“We are very keen to enable their son to live as close to home as possible, and had been working with a specialist care provider to try to achieve this.
“This was a very long and complex process because of the large number of different agencies that needed coordinating in order to deliver care appropriate to their son’s needs, as well as the creation of bespoke accommodation that keeps both Tony and his carers safe.
“Our aim was for Tony to move to his new home before Christmas 2018.
“Unfortunately Tony’s parents recently disagreed with certain aspects of their son’s care plan that we felt were essential for his well being and safety.
“We are very clear that we can only proceed with the full confidence of the parents. Following their concerns the provider pulled out as they were concerned that they did not have the confidence of Tony’s parents.
“With this in mind we are re-starting the commissioning process with immediate effect, and hope to find a solution that all parties are comfortable with as soon as possible.
“We are of course continuing to provide financial support to the family in the interim to facilitate their visits to see their son.”
The hospital Tony is in, is run by a private care company. It said all his injuries were properly investigated, and took place before it owned the hospital. In a statement it told Sky News:
“Any incident that results in an injury to a patient or a member of staff, whether deliberate or accidental, is recorded and notified to the external authorities so that it may be independently investigated by Safeguarding and by the police as appropriate.
“Where there is a serious injury such as a broken arm, then police would have access to medical evidence and/or medical opinion.
“We recognise that long hospital stays of patients with learning disability are inappropriate and we are committed to supporting safe discharge, to community-based support services.
“It is widely recognised that there have been national issues in scaling up this provision quickly enough to meet a significant national need. We work closely with transforming care teams locally including local councils and case managers as appropriate and as a matter of priority.
“We ensure that no patient in our hospital is isolated, including those few that require their own living accommodation separate to the communal areas.
“Such patients are provided with a dedicated staff team with whom they build trust and therapeutic relationships and who are with them most of the day and evening, they have access to communal areas of the hospital grounds with other patients and take part in classes and sports opportunities, as well as supported trips outside the hospital.”
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