Thank you Nita, She did go over the Decision Support Tool which consists of 11 levels of need, each going from 'no needs' to 'severe' and 4 go up to 'priority'. She said that he needed 1 'priority' or 2 'severe' to pass the assessment and he got 3 'high', 4 'moderate', 2 'low' and 2 'no needs'. Since the assessment was done he is worse but they still say that he hasn't got any into the 'severe' category. When I asked about the cognition and said that he didn't know where he was, who he was and a lot of the time who I was, she asked if he recognised me at all. When I said he did sometimes she said that left him in the 'high' but not the 'severe'. On the mobility she said he would have to be practically paraplegic to be classed as 'severe'. However, I have read on the net that they don't have to meet this criteria, he could be passed with 5 'moderate' or 1 'high' and 4 'moderate' but I don't know if this will be accepted at the appeal.
It does seem to be a post-code lottery, I know a few people in the Worcestershire area who have received CHC for their partner and they didn't seem to be as ill as my husband is. We are in the Dudley area and I've been told that they are much stricter - I don't understand this as surely it should be the same over the UK and not applied differently in each borough? They also said that his needs were predictable which I don't agree with but how can I argue when I'm not medical? They just said that I didn't understand the criteria and the one lady said that I could appeal but - quote 'you won't get anywhere' which got my fighting spirit up!!
Do you know anyone I could call who could be an advocate because I can't find anyone?
O thank goodnes - 'real' CHC stuff!
Lena I'm afraid that it is more difficult to gain a 'Severe' for some areas than others.
At the risk of boring you and others who already know but just in case it might help, I'll outline my experience.
My husband's dementia worsened drastically after an amputation at upper thigh level and by the time he was assessed the first time in a community hospital for mental health, he was unable to walk, had MRSA in the wound and had gangrene in his remaining foot as well as frequent pressure sores. He also was an insulin-dependent diabetic with peripheral vascular and also Stage3 kidney disease. He was on Rispiridone for aggresision, paranoia and hallucinations. He was refused CHC funding, never getting beyond the Checklist.
He was transferred to a nursing home and I re-applied in September 2012, when the deadline came for retrospective applications. I applied for both retrospective and forward CHC. The nurse in the home said he would not get the funding but I ignored her.
He was by this time, totally dependent on carers for his every need. He had to be hoisted for everything and fed his meals. He was totally cognitively confused and it is doubtful if he knew me but as he was no longer able to communicate in any way that made sense, it was impossible to know.
He was bed-bound apart from 4 hours a day in his special electronic chair due to his fragile skin condition and was moved every 2 hours to try to prevent pressure sores. He also had ulcers on his hand from his permanently clenched fist which nothing was able to help despite the nurses' and GP's best efforts.
He of course still had the previously mentioned illnesses though the home had cleared up the gangrene and the MRSA.
He had also hit a carer and could be very aggresive at times though, as I have earlier mentioned, the assessor said it had to be far more frequent to merit the funding.
This time, in September 2013, he passed the Checklist but was still only in the 'moderate' catergory for Mobility - despite the fact that he was hoisted at all times, barely able to move at all by himself and couldn't even lean forward!
The full assessment was arranged for early May 2014 - not the 28 days as it should have been - but I rang the CHC team the day before to ask if it was ok for my daugher to accompany me and was told that the assessment next day was cancelled because the SW had not supplied their report. Hardly surprising as no SW had been near my husband so what she could have written would have been of no use whatsoever!
That was the last I heard of it! No further assessment date was ever given and my husband died on 10th June. I have received no further communication from them.
Actually, writing this has made me decide to contact them.
Had my husband passed the assessment, they would have had to refund the fees from the date of the assessment, some 9 months worth.
I haven't felt up to taken this further but may well do so and if I do, it will now be retrospective of course which could very well include the time from the first failed assessment too! If I do, I think I might employ a solicitor though I worked so hard to get all the evidence for that last assessment, it would be a shame to pass it all over.
As to what you can do Lena, I would contact Carers UK - a lady from there was really helpful before this last assessment and was prepared to accompany me on the day but was already engaged elsewhere. She ran though all my evidence and pointed out extra points to include. The Princess Royal Trust for Carers can also help.
Alternatively, or as well as, contact the Appeals group of the AS. Details will be via the society's link at the top of the page. I did this and a very helpful lady rang me and was most supportive.
Good luck. x
Off the top of my head he applied for his relative in the 90's. (may have got that wrong). If HE found the whole procedure daunting bless the rest of us who have to fight this injustice.
