Getting continuing healthcare

Same @notaflyingmonkey My mum is literally like an elderly baby and needs constant care and supervision. People keep telling me to appeal but I just don't think I've got it in me.

Their logic is that you need it only if you need nursing decisions to be made on a daily basis. If you can be looked after by trained non-medical carers with only intermittent nursing or medical advice, it’s not a “primary nursing need”. So there is a certain cruel sense to that. It wouldn’t matter if social care were funded properly.

My mum has just been turned down for this. We'd half expected it after so many people told us how difficult it was to get but it was still a blow. She had a massive stroke in November, was in hospital for 5 weeks and then transferred to a nursing home. She has no feeling down her left hand side, can't sit unaided, can't walk (obviously), needs to be fed, is doubly incontinent, has severe mental deficits and still she wasn't eligible.

I'm currently wondering whether to appeal but I don't know if I've got the strength to go through it. I'm just exhausted and sad all the fucking time and part of me just thinks "oh fuck it".

We were given CHC for Mum last year; granted in the January 2021 and she died in September. She had been in hospital/ Nursing Home since December 2020 with multiple conditions including COPD, rheumatoid & osteo arthritis, late onset dementia (not too badly affected), food & nutrition problems, double incontinence and other things.

After I asked if she might be eligible for CHC within 6 weeks her social worker, the Nursing Home Head Nurse and family had an online meeting. We were told the recommendation later that day and received confirmation the following week.
Everyone involved in her care was fabulous - as helpful as could be.
I think we were probably lucky. Good luck.

I've been through the CHC system, on behalf of my elderly dad. I couldn't get much help from anyone so worked it all out myself, and ultimately had CHC awarded via appeal.

It's a gruelling process, to say the least.

You've mentioned that your mum would need 24/7 care from two carers. Do you mean two people would literally be required at all times? If she can't sit unaided, and cannot do anything for herself, what would those two people be doing on a minute by minute basis?

I'm not asking to be nosey or harsh, but to get CHC you have to show that the patient needs nursing care, so either they have complex medical issues and/ or extremely challenging behaviour.

My dad couldn't be left alone for a single minute because, as well as his physical problems, he had no concept of danger, was at risk of wandering, would frequently attack people, smash up his room etc etc. The Assessor decided this wasn't challenging enough and we were initially denied CHC.

The other issue is that someone can be awarded CHC but further down the line it can be removed. Not because the patient has miraculously recovered, but because they've become increasingly less mobile, or are now completely bed-bound, and ironically therefore deemed easier to care for.

Having said all that, from reading about CHC it can be very much a postcode lottery, some areas you're far more likely to be awarded it than others.
It's worth reading up on the National Framework, it might seem daunting but at least then you've an idea how the system is meant to work.

No, it was the social worker who made the recommendation and then mum was assessed by a nurse. I know the social worker wasn’t happy with the outcome, but I was worn down with constantly pushing it.
This was also during the early months of covid, so there was a fast track process in place. Great in theory but meant the process was completely opaque. Application rejected twice with little paperwork to back up the decision.
Sorry I can’t be more helpful. I hope you are successful.

I have. Application rejected twice despite ticking every box (so I thought).
It’s very hard to get, particularly if dementia is involved. A key factor is unpredictability. Unfortunately, though my relative was very ill and required a lot of care, it could be managed with carers.

@notaflyingmonkey just revisiting this thread after you mentioned on mine that our situation sounds similar.

It does sound identical actually - how are you getting on? The hospital told us today that they couldn't do anything more for DM and they were starting the discharge process.

Can your DM swallow? Or move?

www.ageuk.org.uk/information-advice/health-wellbeing/health-services/nhs-continuing-healthcare/
Hope this helps. Really difficult and seek help.

Don’t underestimate how difficult it is. You need to demonstrate she needs nursing decisions on a daily basis, not care that a carer can be trained to do.

The assessment comes in two parts, a screening questionnaire which she will pass, then full assessment which is a completely different beast, and is a sobering reflection on quite how ill people can be and still be alive.

Talk to AgeUK - they can refer you for an hour’s free advice.