My 13 year-old son Josh is happy (sometimes sad), beautiful, cheeky, observant, well behaved (sometimes not so well behaved), loving, wanting and caring.
However, Josh’s natural, endearing personality struggles against an urge to self-harm and severe autism that can make his world a confusing and frightening place.
In 2012, Josh was moved to an assessment and treatment unit in Birmingham. This was meant to be for 6 months…he is still there.
Josh has now spent both his 12th and his 13th birthdays in the unit, 260 miles away from me and the rest of his family in Cornwall. He has never met his little sister.
This whole experience is heartbreaking for our family. We have been fighting to get Josh the care he needs, closer to home and his family but Kernow CCG will not provide this. In the last few weeks they have told us he can’t come back to Cornwall and must go to another service, still over 170 miles from home.
Josh continually asks for us and when he can’t see us he becomes anxious and more likely to self injure. Josh’s self-harming is so severe that it is life threatening. Last year he bit his tongue so badly that a third of it then had to be removed.
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.
Josh is not the only child stuck miles away from his family and loved ones. There are currently 185 children and young people with a learning disability or autism in similar situations to Josh. I am sure every one of their parents feels just as helpless and frustrated as I do.
What is needed for Josh, and others like him, is good quality care, close to home. As we face another Summer without him, we are pleading with Kernow CCG to put the missing support and services in place allowing us to bring Josh back to Cornwall.
All I want is to have my son closer to home.