We are still sat waiting for the LA/ ICB to decide what next! We have so far spent over £10k in legal fees and I imagine the LA (local Authority)/ ICB (Integrated Care Board) have probably doubled that bill.
They have bullied our current agency, we have evidence to prove it through a SAR (Subject Access Request). Until a few days ago, we had an inadequate care agency shadowing, which is costing the LA/ICB around £600/day. The first carer they sent was ‘a senior carer’, he told us this was his first care role. Previously he worked in Africa as a warehouse manager, and had done some online training prior to coming to us. He was a very nice chap but not safe to be working with a complex chap like Rohan. One of their employees found the job too challenging so she went and slept in our spare room during the day. Others were walking around our home exploring, a few burst into our teenage daughter, Serena’s room with no announcement. To say we are uncomfortable in our own home is an understatement. Rohan was feeling this too, his seizures rocketed to 5-7 per night all last week. We had family coming to stay this weekend for a celebration so I asked them not to send carers and Rohan’s seizures came down dramatically to 2 on Saturday and zero Sunday night. Every seizure is life threatening.
How is this in Rohan’s best interests?
When I informed the SW (social worker) about this it was side stepped. Then I used their own weapon “Safeguarding” against them. Reminding them of their responsibility and asking for a pause in the transition. Thankfully the transition has since been suspended!
As deputies we still haven’t been consulted and they are still making care decisions about our son.
In light of the information we have in the SAR we have requested an apology and explanation for us and our current agency. I am going to remain hopeful but not holding my breath!
