I'm still in shock. I've just had a call from the nice lady at Nottinghamshire County Council complaints department. The manager has agreed to me having a Direct Payment of 26 hours a week AND the flexibility to spend it on meeting my assessed needs.
I've spent hours sitting through gruelling assessments, collating evidence, photocopying medical letters and writing my service user led "outcomes", and yet more hours telephoning, emailing and writing to chase people up and get this whole thing sorted.
I honestly do not believe that Nottinghamshire County Council know their arse from their elbow but the manager decided he wasn't going to argue over 3 hours a week and I get to keep my team of staff and my independence.
I am so relieved but I'll be happy when I have it all in writing!
It's been a long five months since my first review. I was on 32 hours a week (which was three hours more than I needed because last year they gave me my husband's Direct Payment to me due to a complete mix up and a change in policy) but they cut my hours to 27 and said I could no longer employ my cleaner for 6 hours a week because they said I only needed support for 1 hour a week to do all domestic chores, laundry and shopping. For a family of five. Putting this into context, it takes around 20 hours a week and I can't do more than 5 minutes without making my health worse, getting completely exhausted, flaring up symptoms or collapsing.
I complained and they did another review based on a policy that didn't actually exist, then they did another review and said I only needed 23 hours a week. I shouted at them. Lots. I made an official complaint, I wrote to my MP, I ranted on Nottinghamshire County Council's Facebook page and generally kicked up a fuss.
I tried to juggle everything around but I couldn't meet my needs with 23 hours, especially considering I was only allowed to spend four hours a week on domestic chores and one hour a week help with packing away an internet supermarket delivery (apparently I lost the human right to leave my home and go to the shop). Part of my budget was spent on taking my children to school and as summer approached by almost 10 year old daughter asked if she would walk to school on her own. I agreed which halved my child minder costs, allowing me to reduce my package to 26 hours.
After many emails and phone calls explaining the situation and trying to find a solution the manager apparently agreed to 26 hours and flexibility in my package. I can keep employing my cleaner, I can pay my childminder to take my youngest child to school and I can continue to pay my personal assistant, who is worth her weight in gold.
I'm really angry that it has taken so long to find a resolution. I have lost sleep and suffered stress related health problems including a heck of a lot of pain due to the mismanagement of what should have been a straight forward review, but I am pleased it's all over, at least until my next review!
Tonight I may celebrate with a small beer. It's not good for my POTS and I'll have to forego my pain killers but I think I have earned it.
To anyone else fighting social services I urge you to not give up. Stand up for your rights, if you don't no-one else will.