Claire is 20. She is a sweet, loving girl, who loves to spend time with her family and doing activities in our local community in Swansea. She also happens to have autism, learning disabilities and behaviour that challenges. 12 weeks ago our family was ripped apart when Claire was sent to a medium secure unit in Brighton; more than 200 miles away from us.
It's been extremely hard for Claire. She has been very homesick - missing out on family events, missing her brother and sister and friends, the community, her weekly swimming and trampolining and walking her puppy, Jonjo. She has no idea when she will be coming home next. She is unable to use her main forms of communication, Welsh or Widgit, and has had little access to Skype, her only way of communicating with her younger sister who is deaf.
It has also been incredibly difficult for us- to have our daughter crying on the phone 5 hours away from us. Wanting to comfort her and tell her not to worry, but not being able to be there. It is heartbreaking for us. We are travelling to Brighton each week. This is a 10 hour round trip and is absolutely exhausting. It's worth it of course - to see her – and she knows that we will carry on doing it for as long as we have to. But, it never feels enough.
How did we get here?
Claire was sent to the unit in Brighton as the health board in Wales said they didn’t have the facilities to care for Claire locally. But, as the unit in Brighton is a mental health hospital it is not able to cater for Claire’s learning disability or autism. They have been honest and said they are not the ideal place for Claire. They don’t understand her communication and don’t understand the timetables and structures she needs, her play skills, her music. All things that are really important.
Before she was sent away Claire was living in an assessment unit in Swansea. She had been there since April 2012. Despite not living with us she could still see us whenever she wanted and she came home or went out in the community with us all the time. We didn’t want her to stay living in a unit but at least she was close to us there and could see us regularly. We still don’t understand why Claire had to leave there or why somewhere closer couldn’t be found. Things have to change. Why should Claire be deprived of her family life, her community, her friends and her puppy?
That’s why we started our petition
Our hopes for the future
As her parents, all we want for Claire is to have a lovely placement close by where she can settle and feel happy knowing that we are nearby. There has been talk of her moving to a unit in Wales, but we have no idea when this would be, or where it would be – and we are fully aware that even if she comes back to Wales, it won’t be to the community she loves so much, to start with at least. They need to develop something for Claire in her community but there is no evidence they are doing this. She is 20 – she wants to get on with her life like any other 20 year old. She doesn’t want a life living in units. She hates units.
We have known our daughter for 20 years. We know Claire so well – her triggers, what makes her happy, how to keep her from becoming bored etc – it’s a shame no professionals ever want to listen to what we know. Parents should be involved in decisions, but it doesn’t happen. We wish we could change the law so that parents are treated as equals by professionals and once their child turns 18, they really do have a say in their future.
Claire has just been allowed to come home for a 4 day visit with us, on her own. Again, this shows why Claire does not need to be living in a unit. Having her back has been lovely. We have been able to do normal family things, like have a takeaway all together, and go and see ‘Joseph’ at a local church. Claire has been able to meet friends, have her nails done with her sister, go shopping, play the piano at home and walk Jonjo around the village. To enjoy life like any other 20 year old.
But at the end of it, she had to return to Brighton.
Claire should not be living in a unit. She should not be 200 miles away from everyone who loves her. She has said to me that it’s her life but nobody is talking to her. It is heartbreaking.
Please sign our petition to bring Claire back to Wales, her family and the people who love her.
Claire has been allowed to come home for a two-week stay. This is positive news but still no decision has been made for her to come back permanently to Wales.