Respite services broke down in January for my son and had no visits from case worker since April and therefore caring every day now without much of a break. Been going on for years all the difficulties with support due to care providers not having experienced support workers.
My son and I have had enough of always being let down and so decided to not have it anymore and managing most of the time with the new routine of no support. I have a few hours of free time during the day. I just don’t need any extra stress from outside influences and today went to his annual check up at the doctors and saw a different nurse as per usual, who did things differently than the last one, she said she had a “lot of questions and is” nosey "but these questions led to my son getting upset as he just wanted to get on with the check up and wasn’t used to all the questions which confused him. He has autism and mild learning disability, severe anxiety. I told her our new situation of respite breaking down. I just don’t need any more difficulties than I’m already having and they don’t seem to see this and just say “I’m just doing my job” seeing things in black and white. She eventually wrapped things up when she could see my son and myself were getting stressed, but why do some people in this “caring” industry, not be empathic towards your situation unless you spell it out to them and end up getting into an argument, causing more stress and poor health. I feel extremely exasperated.
Complain to the surgery, she has an “urgent need for further training”!
Have you investigated finding a good residential school for your son yet?
I am going to see the doctor in the new year and tell him what happened and hopefully we won’t be seeing her again.
Thanks for your advice, I’ve decided to see the doctor in the new year and tell him about what happened and hopefully get somewhere, but I won’t hold my breath.
He went to residential school for nearly two years and unfortunately had a bad time there and had to bring him back a couple of months earlier as well from his final year as it was making him ill, so all in all since leaving school and going into adult services, it has been a nightmare. I was warned that the services and support was not as good as children services,.but I could never imagine it would be this bad. My son is twenty six.
Thanks very much for your advice and replying
I’m sorry, I confused you with someone else with a much younger son.
When did Social Services last update your son’s Needs Assessment, and your Carers Assessment? Should be done annually and you should be given a copy.
I’m having a “running battle” with Social Services who seem incapable of writing accurate facts!
My son is no longer with social care. After many years of difficulties with them not putting correct information on his care plan and therefore not having his needs met. I had to fight for continuing health funding from NHS so he could get the appropriate care, but after all that, it still remains no better, even though I was told by his learning disability nurse who was involved in the assessment process, that things would be a lot better. He has a carer package of which he should be getting two days of one to one support, but because of lack of understanding /experience of care providers, it all broke down after two months. Took two years of waiting for it.
Is your son with the learning disability service?