Bringing Josh home
Josh’s parents have won a longstanding battle to get their son housed nearer to home. But the failure of council staff to involve them in planning his move has delayed the process and added to their distress. Sadly, this has meant that Josh was not home for Christmas. Noelle Blackman recounts their story.
In August 2012 when Josh Wills was just 12 years old he was moved 260 miles from his home in Cornwall to a specialist children and young people’s unit in Birmingham.
His mum and dad, Phill and Sarah, have no complaint about the quality of care Josh is receiving in Birmingham. 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 the repeated stress and anxiety every weekend when his parents reluctantly have to leave the unit at the end of their all too brief visits. He has spent his 13th and 14th birthday away from home and has never met his baby half-sister.
Ordeal
The family’s ordeal began when Josh was admitted to the Royal Cornwall Hospital, after his condition took a turn for the worse and he began to self-harm with increasing frequency.
“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 Phill. “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 over a four hour drive to the Midlands.
“It’s absolutely ridiculous that he had to go so far away to be looked after,” says Phill. “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 two years, forcing Josh’s parents to take turns to make the long journey every Friday night and back again on Sunday evenings. This huge commitment has been kept up simply because there is nowhere else with the trained staff and facilities to be able to care for Josh closer to home.
Sarah and Phill describe their son’s decline from happy-go-lucky youngster to a deeply traumatised teenager prone to bouts of terrible self-harm as heartbreaking, a decline the family blame in part on the stress of being away from home for so long. The distressing effects of his self-harm is all too evident from the dark bruising on the side of his face from where he repeatedly bangs his head to the swollen lip from repeatedly biting himself. The self-harm is so severe that it is life threatening. Last year Josh bit his tongue so badly that a third of it had to be removed.
Early this summer when the government failed to meet its own deadline of 1 June to move the 3,000-plus people with learning disabilities stuck in institutions to homes suitable for their needs, Phill found himself feeling so angry that he decided to campaign for improvements to the facilities offered, not just to his own son but to others.He launched a petition on change.org to campaign on behalf of the estimated 185 children and young people in similar situations to Josh. Soon the petition began to attract thousands of signatures and (at the time of writing) has been signed by 241,351 people.
Phill spoke at an All Party Parliamentary Group meeting at the House of Commons in early July and made a direct plea to Norman Lamb. Shortly after the Minister met Sarah and Phill and the commissioners and heads of services from their local area in Cornwall to try to move the situation forward. I attended this meeting with them as an advocate.
Since then the momentum has gathered and in August Phill was thrilled to be able to let all Josh’s supporters know that “… at last Cornwall have agreed to a local provider which means that Josh will be coming home to Cornwall! We’ve seen the house, which is just a short drive away from both Sarah, myself and our families. Josh will finally get to meet his little sister and once again play with his other siblings. I can’t wait for that moment”.
He continues: “The new providers and carers will travel every week to Birmingham to get to know Josh, with the help of his present team and us. Transition will take time to make sure everything is right for Josh. Our big hope is that he will be home in Cornwall for Christmas.
Gratitude
“Our gratitude to each and every one of you who signed the petition is hard to put into words. Please know that every signature was instrumental in the process to #BringJoshHome.
Now we can start to look forward to settling Josh in his new home, being able to tuck him in and kiss him goodnight.”
Unfortunately, things have moved far more slowly than the family had hoped. When I spoke to them recently they said that although things are finally moving in the right direction they feel the process is taking far too long and they have often felt frustrated at the lack of forward thinking and inability to make things simpler.
Infuriating
At times they found the local county council infuriating with their rules and processes. They did not feel properly consulted and were often excluded from meetings and decisions. One instance Sarah cites is how, instead of involving her and Phill right at the start of planning the home that Josh will live in when he comes back to Cornwall, plans were drawn up without them. For example, when a risk assessment for the house was carried out by an occupational therapist (OT), it was very thorough, (an 80 page document was produced); however, because it was not done in partnership with the parents, certain elements that were unrealistic for Josh were excluded. A suggestion to section off the upstairs of the house would drive Josh to distraction because he would become desperate to get up there. To her credit the OT did retrospectively listen to the family and issues they addressed were changed but it would have been quicker to have worked in partnership with the family from the start.
As Sarah says : “If there had been forward thinking, communication and getting the right people in the room, we would have just cut a corner and saved time.”
It has also taken a very long time for the council to finally sign a contract with the new provider. Sarah and Phill kept pressing for this as it meant the provider could not begin to recruit staff and train them up but no-one could give them an explanation for the delay. I have since heard that the contract has finally been signed.
Phill and Sarah feel that the focus of this process has been far more on money rather than on Josh. Sarah states: “We often get the feeling that some members of the council have, over time, lost their compassion, open mindedness or willingness to change and make things right”. She added: “The system just wants to fit a child into their box rather than look at that child’s individual needs and money and cuts play a huge part in the failings of care”.
Respect
Because the process has taken so long, they are aware that the stress of not having Josh near them may sometimes make them oversensitive. They have just wished to be a part of the process, to be treated with respect.
Phill and Sarah now accept that Josh won’t be home for yet another Christmas which makes them incredibly sad. We are all hoping that he will be home very early in the New Year.
I wish the family and Josh good luck with continuing to move things on and look forward to being able to bring you good news about his move home very soon.
Noelle Blackman is CEO of Respond and a Community Living advisor.
