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New to dementia journey - Page 88 - Carers UK Forum

New to dementia journey

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936 posts
Hello Pet,
Your husband's needs might be managed but they are STILL managed needs and should be taken into consideration. See page 43 of the NHS national framework for continuing health care .

You sound to have a good social worker on your side..I'll Just keep everything crossed that you're successful!

Big hug. X x
Melly , I'm not certain how long it will be regarding the outcome,as the social worker and assessor are going to get together with the extra evidence he wants to sort out with Hubby's GP and psychiatrist, ( the home asked for the psychiatric because of Hubby's unpredictable behaviour)I gather 28 days is the magic figure?)
Joan, thank you for your info, I've looked through and made notes. Hubby, in the social worker, clinical nurse at the home, mine and my daughter opinions has severe needs on at least 2 of the criteria, and the word severe is important. The framework has changed so much in the last year, and its not in favour of the clients. I'm hoping the social worker is on Hubby's side because I haven't met him before, but he was adamant that she was playing down Hubby's needs.
I've just been through this week's Ombudsmans rulings. In a case of Mrs C against Oxfordshire council he wrote
Progressive disease:
At the time of the 2016 review, Mrs C said she did not see how Officer O could find her needs had lessened since her 2013 assessment as she suffered from a progressive disease and her needs had, if anything, increased since 2013. This is a legitimate argument. Where a service user suffers from such a disease, there must be a presumption that their needs remain, at least, constant, in the absence of good evidence to the contrary. The evidence of Ms D that the two-hour morning slot was required was ignored.
Cost cutting exercise:
All of this leads to the conclusion that the review was, as the guidance says it must not be, a cost-cutting exercise. This was fault and it caused injustice

Hope it helps your potential arguments with hubby current review
Social worker is going to Hubby's nursing home to through his files thoroughly. Can't speak to other agency's until next week. He is certainly not in agreement with the assessors downgraded. Explained that I had been researching, and a couple of things that I can't possibly agree with. He agrees with me.
Having issues with Hubby's Barclaycard too..Thought I had that sorted but no, another place where notes on the computer are ' missing'. So now, am waiting for a callback from them. Time spent sending relevant info to them, recorded delivery etc. Part of my argument is them upping Hubby's credit limit knowing he was struggling with capacity. Life is a fight, and if I am honest, its. very wearing.
Hubby back to the hospital again. Low potassium. More anxiety! I have however informed the social worker, as this is more evidence of Hubby's health issues.
Poor Hubby and more worry for you, but as you say, more evidence to prove he still needs CHC.

Hi Pet, it can seem like an endless merry go round can't it? I admire your strength battling with CHC alongside caring as both are more than a full time job. Do look after yourself as a priority as it is all so wearing.
My meeting with SSD was horrible. I explained at the start that I was poorly, full of pills, covered in Vick, with a sore throat. No consideration for this at all.
I'd asked for the meeting before Christmas, to go through the Needs Assessment and the Support Needs Analysis with the Care Manager.
The Team Leader refused to do this!
I'd gone prepared with carefully prepared charts, in colour, showing the hours M was getting care, and when he wasn't.
I especially wanted to discuss leaving him alone at his flat for 19 hours.
I was asked when these happened?
I had to explain that there were 24 hours in a day, so if they provided 5 hours of care per day, that left 19 without care.
The meeting went on for 2 hours, by the end of it my voice was so sore. I'd prepared an evening meal, my son ate his, I had half a can of rice pudding instead!
The Team Leader kept talking over me, although I asked her repeatedly not to do this, that it was difficult enough for me to speak at all. Ignored.
At one stage I said that there wasn't any point in me staying if she wasn't going to listen.
The Complaints Officer who I know well was supposed to be coming, but he had a "family emergency" and wasn't there. Real shame, as he and I have both tried really hard to get all this sorted out for ages.
Didn't sleep well last night of course, kept waking up, and have only just realised it's my "sort of" birthday today. Really it's the 29th, but there isn't one this year!
BB, sorry to hear the meeting was so awful. Talking over someone in a meeting is so so rude( anytime really but such important meetings especially). Did you not ask your advocate to attend? Fight fight fight is the life we seem to have.
Its a bit odd about hubby being admitted to hospital. He went in with the potassium level that he has been discharged with in the past? It is fluctuating a little. I'm not going to say anything though because the GP saw fit to send him to the hospital. He was OK in himself when I visited, just having blood taken. Poor hubby he is like a pin cushion, and he defiantly is more confused when in hospital. Something to tell the social worker maybe?
I had a horrible journey home. Its 2 buses and something had happened with the second one, which is the most regular of the two. 50 mins later I caught another bus that goes a much longer route, and drops me further away from my house. I was frozen, and caught in the rain. Saving grace is the fact that hubby was happy to see me and has definitely looked worse in the past.
I've changed into my PJs and settled down a little, or trying to.
My advocate was there, and doing his best.
What really annoyed me was when they said they were trying to do their best for M, to which I replied "Don't you think I am?!" It would be much easier for me to walk away, but M deserves help.

Sorry to hear about your awful journey home, it just makes hospital visiting even more stressful than it already is. Maybe the hospital is going to investigate why hubby keeps getting low potassium, rather than just topping him up?
I can't understand why the home can't keep on top of this.
936 posts