Winterbourne View: One autistic boy's tragic tale

osh Wills instinctively knew something was wrong when the ambulance taking him from hospital turned right instead of left just outside Truro.

Despite suffering from severe autism, he recognised the vehicle was not going down the usual turning for the brief ride home, but to his obvious distress was embarking on what would turn out to be a 260 mile journey north to a strange new city.

Now, nearly 20 months on, the 13-year-old is still being looked after at a specialist care unit far from home, and his parents have to make the same lengthy journey every weekend to Birmingham just to see him, simply because there is nowhere else with the trained staff and facilities able to care for Josh closer to home.

And the youngster still feels the pain of separation whenever his mother and father reluctantly leave the unit at the end of their all too brief visits.

“It is absolutely heartbreaking for all of us,” Josh’s father Phil told The Telegraph. “One Sunday, just a few weeks ago, I was putting my shoes on to leave and he reached out to pull me back into my chair and tried to take my shoes back off. He knew I was going home and wouldn’t see me for a while and he didn’t want that.”

Josh is just one of more than 2,600 people with learning and behavioural problems stuck in institutions which are either too far from home or not suitable for their needs – people for whom the Government set itself a deadline of June 1 to move to more appropriate facilities based in their own communities. A deadline it has now missed.

The latest official figures show that just 182 will have been moved by this weekend’s and only 74 more have a date for transfer.

Anger over the situation in which he and so many other families find themselves because of this broken promise led Josh’s father to campaign for improvements to the facilities offered not just to his own son but to others. These have come to be known as Winterbourne View cases, after the scandal at the care home, near Bristol, where residents were subjected to abuse by staff.

As part of that campaign Mr Wills has produced a short, yet heartbreaking film showing his son’s decline from happy-go lucky youngster to a deeply traumatised teenager prone to bouts of terrible self-harm, a decline his family blame in part on the stress of being away from home for so long.

Opening with home video footage of Josh playing on the beach, running carefree through fields near his Cornish home and enjoying the warm embrace of his family, the five-minute film goes on to show the distressing effects of his self-harm, the dark bruising on the side of his face from where he repeatedly bangs his head and the swollen lip from biting himself. It is story of a child’s decline which should shame any Government health minister or NHS bureaucrat.

Mr Wills and his former wife Sarah have no complaint about the quality of care Josh is receiving in Birmingham, at a specialist children and young people’s unit he prefers not to name. Their argument is that he should be treated far closer to home, where they could visit him on a more frequent, ideally daily, basis and where he would not have to suffer to repeated stress and anxiety of saying goodbye for a week at a time.

“The Government needs to speed things up,” said Mr Willis, 41. “We want those services Josh needs in Cornwall where his family live. And we want the same for all those youngsters who are stuck in facilities far from home that aren’t right for them so that they and their families don’t have to go what we’re going through.”

The Wills’s ordeal began in August 2012 when Josh was admitted to the Royal Cornwall Hospital, near their home in Truro, after his condition took a turn for the worse and he began to self-harm with increasing frequency.

Jack Wills and his mother

“He had been a happy boy who loved life. He had always had an issue with hurting himself but it was something we coped with,” said Mr Wills. “But then it became extreme. I did my best, but he became a risk to himself. He would hit himself, or bang his head. He’d bite his lip until a chunk of it came away. It was horrible to see.”

After three months at the Royal Cornwall it was decided to transfer Josh to the nearest specialist unit. But with no facilities in Cornwall it turned out the 'nearest’ meant a four drive to the Midlands.

“It’s absolutely ridiculous that he had to go so far away to be looked after,” said Mr Wills. “Leaving Truro he knew he wasn’t going home when the ambulance turned right instead of left. He knew it wasn’t the usual route and he was very upset.”

What had initially been expected to be a 12 week stay at the unit in Birmingham turned into six months and has now been over a year and a half, forcing Josh’s parents to take turns to make the long journey every Friday night and back again on Sunday evenings.

Mr Wills, a former theatre box office assistant and now full time campaigner for better services for people in Josh’s situation, said: “He is treated very well where he is. His carers are part of the family and Josh trusts them and is comfortable with them. But they have always recommended that he should return somewhere nearer home, for his own good. Being away from us makes this stress worse and leads to further self-harm.”

Indeed, during one particularly traumatic episode Josh, who has a particularly high pain threshold, bit off a slice of his own tongue.

When – despite months of pleading – Cornwall Council, together with Kernow NHS Clinical Commissioning Group, failed to provide suitable alternative care nearer Truro, Mr Wills launched a petition on change.org to campaign on behalf of the estimated 185 children and young people with conditions similar situations to Josh. Soon the petition began to attract thousands of signatures and has now been signed by nearly 175,000.

Mr Wills writes movingly on the BringJoshHome website how his son has spent his 12th and 13th birthday away from home and has never met his baby half-sister, stating: “We visit Josh every weekend. This is exhausting but it still never feels enough. Whilst the staff caring for Josh do a great job, what we can’t understand is why Josh can’t receive that same level of care, closer to home, so we don’t have to travel for over 5 hours just to give him a hug.”

Speaking for dozens of parents in a similar situation Mr Wills added: “You never harden yourself to leaving him, but you have to in order to get on with your life and look after your other children. You have to carry on because of them but its very, very hard. Something has to be done. The promises that were made have to be kept, because things can’t go on like this.”