Social Care Network: My Social Care Story – Lucy Marsden
I don’t wonder how the accident could have been avoided, because I know. The way everything was at the time, I don’t see how any parent or carer could have avoided it other than by marching to the council offices, handing their child over and saying: “Here, you do it now. I’ve asked for help repeatedly and you’ve given me none. I’ve had enough.”
The accident happened in the holidays. As usual, my autistic child and his siblings were stuck at home inside. I could no longer keep them all safe on my own outside so it was better not to go out. This had been going on for a year.
Unfortunately, it all started in the wrong postcode. Mine.
Before the incident we had spent the best part of two years trying to get a referral, first with social care and then child and adolescent mental health services (Camhs). Things were getting worse because my autistic child’s anxieties and OCD behaviour were increasing as he hit his teens. He was hitting out, constantly ripping books and posters and destroying our possessions. I was desperate for specialist help.
For exhausting, torturous month after month it became a waiting game. Ringing the surgery, my GP trying to reach someone for me, nothing happening. Our appointments took place in our car in the surgery car park so my son wouldn’t run inside, rip everything off the walls and, basically, run amok.
Eventually, the Camhs wheels started to turn. I was asked to meet a nurse with my child, who turned out to be an assessor who obviously hadn’t read any of the previous paperwork or his statement of special educational needs.
I then asked Camhs to help me with social care as I was getting nowhere with them. All my emails were ignored. I was close to breaking point. No help from Camhs, no help from social care, and no help from school. A succession of assessors (who asked how to spell “EpiPen”), visits from inappropriately trained occupational therapy professionals, and a care assessment omitting my son’s life-threatening allergies.
In the end I was given an appointment to see a clinical psychologist. She was mortified, as was the psychiatrist when I eventually saw her. They begged me to complain as they couldn’t change the assessment process; one said they were unable to change anything even though they were on the inside. I was told by one of these professionals that I had to choose where I put my love: my autistic child or my other two children.
Even after the incident, nothing happened until my child’s school said they couldn’t handle him. A meeting was held with 19 people round a table looking at my photos of the utter destruction of the house, agreeing what had been patently obvious to anyone who could be bothered to listen. A few weeks later the council agreed for my child to go into residential care at the school of my choice.
So what have I learnt? Carers are neither recognised nor remunerated properly for the difficult work they do – parents are not supported to do the job the state wants them to do, which is to save it money. Husbands and wives or partners are not supported to stay together and cope.
Professionals and social workers are told to save money by their managers at all costs. The training and support isn’t there for social workers either, nobody stays, there is no consistency, and it feels as though the whole care system is broken.
My advice to social workers and other professionals would be to remember that you have a duty of care, try to reply to emails and calls from desperate parents, even if it’s to say in a sentence that you’ve received it, you are too busy to reply now, but you will write back later. Caring is a very, very isolating job and that email reply makes all the difference.
It seems to me it is better for the local authorities that parents and carers don’t know their rights or how to complain. But exhausted carers shouldn’t have have to scrabble around trying to find out how the system should work.
My advice to parents is to remain calm and proactive. I have been told by a GP that to be seen to be not interacting with services, if you get them at all, lays the blame on the parents. What for, their child’s severe autism? And crucially, email, email, email. Even if you get no response to calls you’ll need the trail later on and it provides a valuable record should you ever want to tell your story.
We’ve had a kind of happy ending, as my child is now as happy as he can be. He is in a residential school with people who are trained in complex autism who can meet his needs, and he has care during the holidays so he can return to us. But it pains me that it took nearly two years to get him there and that every child does not have the kind of experienced care he has now. In the end, my family was just another accident waiting to happen.