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DIRECT PAYMENTS 6 years 10 months ago #13541

After years of fighting with DWP and settling for indefinite care and giving up on SS help I have bitten the bullet again.I have fibromyalgia + CFS.
I phoned SS and an SW came out to assess.It was the same one I saw 5 yrs ago and she is recommending Direct Payments.In our area only the top two categories of substantial and critical needs get it.I will get the DP worker coming out after xmas and we will sort out bank,budget etc and find a carer for me.My DH will also get a carers assessment and may get his own hours as he has health issues too.

I'm so delighted :) An OT is coming too :)
I'm also contacting the local advocacy team to help apply for more DLA as she thinks it needs reassessing.

I read here often but had got too disheaertened to post.If anyone else feels like that...keep trying.It might just work.
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Re:DIRECT PAYMENTS 6 years 10 months ago #13543

  • indieames
I agree, after years of being fobbed off I finally dug my heels in a few months ago. After a lot of fighting (I even had to get my councillor and MP involved) I've been awarded 5 hours pw, which is what I asked for. I've found a carer and it should all be set to go in Jan, once all the financial stuff's been set up.

I can't wait, I'll be able to have a shower twice a week, can't remember the last time I was well enough to do that!

So, don't give up, but be prepared for a fight. Complain if you have to, it's worth it in the end.
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Re:DIRECT PAYMENTS 6 years 10 months ago #13547

Well done to both of you looks like the new year will be a happy one B)

We are all disabled here, I have Fibromyalgia, Hubby has spinal problems and Aspergers syndrome and both kids are autistic and SS told us we didn't meet the ctiteria!!:huh: Would love to know how bad it has to be before they offer help
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Re:DIRECT PAYMENTS 6 years 10 months ago #13569

  • indieames
I'd advise you to try again and fight. The first social worker I saw this time said that I didn't need to get washed and dressed as I had no reason to leave the house, that I should skip meals when I was too tired to make them, and that if I wasn't able to make it out to hospital appointments it didn't matter.

When she gave me a copy of the assessment I went through it question by question, pointing out where she'd assumed answers without asking me them, and misquoted me in the ones she had. (the best one was 'no problems with incontinence' - I'm on medication for it!). I sent a copy to SS, my councillor and MP. They sent someone else out (with experience of mh problems) who did another assessment. Well, really all he'd done was copy and paste my email into the relevant boxes! And then checked with me that there wasn't anything else I needed to add. Even though most of the work was already done it took twice as long as the first assessment. I had my MH outreach worker with me too. At the end he asked me what I wanted, and agreed to the 5 hours I asked for.

It really is worth persevering and standing up for yourself, unfortunately that's very hard for ill people to do.
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Re:DIRECT PAYMENTS 6 years 10 months ago #13575

Thanks for the reply
I have asked for a grant for a walk in bath as the shower with a seat I had fitted is rusting?? And it is nearly impossible to wash my daughter plus she hates it and screams all the time. They said they wouldn't do a walk in bath aonly a wet room and I will have to wait as they are dealing with enquires from July so no Idea how long I will have to wait just for the assessment alone. My council is pants.

How dare she say you don't need to wash and to skip meals!!! How do these people get these jobs?
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