Hi , just wanted to tell you my husband who has PSP, has just been awarded fully funded CHC funding .I’m not going to say the process isn’t difficult or painful ( hey lots of practice with PSP) but this is going to make a huge difference to us as a family about the care and the quality he will now receive.
It is possible guys just hard work but your well used to that ….
It is good to hear of CHC success and what a relief for you both.
Don’t want to burst you bubble here but …
You will have funding reviews - a big one at one year - I wasn’t aware of this and was scrabbling around for evidence to support ongoing funding. So to make your lives easier continue to gather evidence in anticipation of your husband’s reviews.
Well done and celebrate the success
Tippy xxx
Well done. How does one go about claiming for it?
My friend with PSP doesn't need it now, but of course may well in the future. Her husband is very frail and children live far away.
While they are both mentally alert, we're trying to begin to make some advance plans. It is hard to know where to begin.
Both of us worked as social workers for years, and her husband as a senior probation officer, so we are well aware of the need for planning ahead. Eleanor
I am so pleased for you. I know how hard it is to get it, it took us three attempts but eventually got it for my husbands last 18 months.We were reviewed again after 3months & then had to have another meeting to see if we were still eligible.
It is such hard work & traumatic.
Make sure you keep any evidence, photos, letters & appointments to back you up when you are reviewed again.
well done, my husband has just been refused this funding, due to not fulfilling the mental health criteria , he has dementia for goodness sake !
The criteria are primarily designed to NOT include people with dementia! (Because of course that's the biggest need and it would cost the NHS too much). So you have to focus on as many clinical and medical issues as you can!
Hi
Please May I ask how many hours they have agreed to cover a week in the care plan?
The care plan / paperwork hadn’t been finalised yet , but the talk has been around 4 weeks respite care per week , and 48 hours per week care . Will let you know when it’s been written in stone !!!
Thank you for sharing this, it is quite encouraging. We had a "positive checklist" 6 weeks ago but the full assessment hasn't started yet, our social care team are struggling with backlogs and apparently one of them need to be assigned to the assessment before it can start. We were worried about starting too early (and get refused) versus starting too late (and getting refused). My husband's mobility (severe fall risk) and behaviours (high impulsivity and definitely not compliant with care) are currently the reason he has to be supervised 24/7; along with enough other moderate needs (communication, breathing, food/nutrition and something else I've forgotten). I can see how this could change as/if he loses more mobility and motivation; it's right now he needs supervision and help with neurophysio.
I'll be posting as the process gets underway - I'm hopeful so could obviously get disappointed.
Big hugs 🫂 🤗
Thank you for sharing this. I’m a step behind you but it sounds as if my husband has similar needs, leading to the necessity for 24/7 supervision. 🙏🏻
We had a positive check list for CHC two weeks ago and we have a full assessment meeting scheduled for this week. Any advice from anyone who has been through this process would be greatly appreciated.
I’m so pleased for you. I’m also totally confused about the seemingly arbitrary distinction between social care and medical care, particularly as someone with PSP wouldn’t have any care needs if it wasn’t for the illness. Does someone with PSP have to have reached a late stage of the illness to get CHC funding?
hi yes it’s hard to understand the distinction but this is how I do it. I wouldn’t ring the doctor or district nurse to prepare a meal and feed my husband but I would phone them if he were choking on the food or couldn’t swallow the food. I wouldn’t phone the Gp or district nurse to help my husband go to the toilet but I would if he wasn’t able to have a bowel movement for a week as I’d be worried about a blockage. I wouldn’t ring the doctor or district nurse every time I needed to move my husband from his bed to chair even though he can’t walk but I’d phone them if ge fell and hurt himself etc … somethings can be managed by carers but sometimes you need the doctor or district nurse see. The needs and risks of needing the doctor or nurse will be the deciding factors. If they need help with day to day living that’s a carers job not a doctors. Social care v health care.
It’s good to hear this, I’m very pleased for you.
We have recently been refused CHC funding & are gathering information & support to appeal the decision.
My Mum has CBD & non fluent aphasia. She is non verbal, has no mobility, PEG fed & double incontinent. After several short stays in hospital at the end of last year for chest infections & pneumonia she was transferred to a nursing home (as strongly advised by the medical team at the hospital) at the end of February.
My Dad cared for my Mum at home with 2 carers visiting 4 times a day but it was becoming extremely difficult for him.
My Mum has ‘moments’ where she becomes distressed & screams very loudly. There is no way of communicating with my Mum so it’s very difficult to know what is wrong.
Do you have any advice for appealing the CHC funding decision? We have a letter of support from the consultant that my Mum was under when she was last in hospital and another from UCLH (University College London Hospital ) who diagnosed my Mum with CBD in 2021. Is there anything else you would recommend?
Thank you.
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