The girl was Sectioned last Wednesday. She’s in our local assessment and treatment unit.
Let me rewind to the blog I planned to put out 10 days ago. It started; ‘Yesterday morning, in tears, I spoke to a dear friend and CEO of a national organisation who you will know, and who has been supporting me over the past couple of months, who said to me, “Tricia. Now I understand how people end up in assessment and treatment units.’’
Some of you will know I’m lucky enough to be the Shared Lives carer (Mum) to the boy who’s 26 and the girl who’s just turned 22. She didn’t see any of her birthday as she couldn’t come out of her bedroom. We’re in the middle of what professionals like to call a crisis. I’m lucky, I’m being supported in that crisis by any number of amazing people whose names you see on Twitter, whose research articles you will read, whose opinions we value, whose love and support I am incredibly grateful for. We’re still in a crisis. The girl is so unhappy, so distraught, and in such turmoil that she’s doing her best on a daily basis, to do herself damage by hitting her head and her face on a wall, with her hands, with her phone. It’s so hard to watch. It’s so hard to be part of. She doesn’t have the words to tell us what’s going on, but the few words she has point to her remembering things that happened when she was a little girl – to trauma.
That crisis led to her being Sectioned last Wednesday.
I’m surrounded by all these amazing people, and I make a living from people paying me good money to help people leave assessment and treatment units, to help services understand about getting people gloriously ordinary lives, to challenge how services and support are commissioned. I make a living from sorting things out, and yes, I’ve failed to do it for my own child.
Here’s what went wrong:
We know that a big part of why she is distressed is that she’s struggled with leaving school. She was in mainstream school from the age of 9 and thrived, but as soon as she reached college at 19, her education experience broke down – she wasn’t included, there were no aspirations, and she didn’t feel like she belonged. She mourns school and the identity it gave her. Post 19 education for people with learning disabilities and autistic people sucks.
There are a huge number of people involved in her support now, from health, social care and education. Every day, for the past two months, I have had a conversation with those people, and every day, someone has said to me some version of, ‘I wish I could think what I could do to help.’ Earlier this month, we had a Care Education treatment review for her. The Chair had the grace, about an hour into the meeting to ask, ‘Can someone help me and explain just who is doing something here?’. No matter what the policy says (and there’s lots of it) we haven’t been able to get her the support she needs at home.
She has an amazing team of five personal assistants who support her through a Direct Payment. Until a couple of months ago that team was focused on simply getting her a gloriously ordinary life. Then suddenly, we needed to have two people supporting her at any time. Don’t get me wrong, there are no restraints involved, we know that doesn’t work, but it’s an emotionally exhausting role to support someone who’s hellbent on hurting themselves. There are practical things that need the support of a second person; getting ice packs, towels to stop her bleeding, sorting PRN medication and sometimes dialling 999. So, I’ve found myself trying to add really quickly to our little team of five, one of whom, as luck would have it broke her foot and is out of action for two months, and of course it’s holiday season. So essentially, I’m down to three people at any one time from which I’m trying to staff 24/7 two-to-one support – do the maths, it doesn’t add up. I’ve done one of my legendary recruitment drives, using Facebook and all my local contacts, and I’ve managed to secure three fantastic new people who are getting to know the girl. That takes time though, and they can’t lead a shift until we all have the confidence that they really do know her. Reluctantly, therefore, I’ve had to ask for help to source people from agencies, but there just isn’t the support out there.
So what might have helped?
10 days ago, had I finished my blog, I would have said that she needed a house – ‘housing stock’. Yep, just a house; not supported living, not residential care, not a service solution. First and foremost, a building, a nice flat or a small house, where the girl could go and be with her team so that me and the boy could get our heads down and get some sleep in our own home, rather than having to make use of Premiere Inns for the odd night away. I genuinely think that leaving the family home might have helped her break the cycle of self-harm.
The other thing she needed was access to good people that we can call upon in times of crisis. Not an agency who wants to charge me upwards of £35 an hour for the privilege of somebody who has no idea about anything that they might have to deal with and an agency who don’t get back to me when I write an email with the subject heading, ‘URGENT’.
So, you Directors and commissioners out there. When this is all over, I’d love to work with any of you who are up for it, to see how I can help you commission a couple of buildings that people could use on a temporary basis and gather a small but strong mini army of good people to support them. Help me demonstrate how we can keep people at home in the broadest sense of the word.
