Getting continuing healthcare

[notaflyingmonkey]

DM is about to be discharged from hospital to a nursing home, following a debilitating stroke. She is now bedbound, and given she already had dementia, is further altered mentally.

Hospital are pushing for her discharge, as they feel they can do no more for her medically. They phoned me today and the first question was about if she owns her own home.

I asked for an assessment to be done for continuing healthcare, and got a bunch of what sounded like waffle back.

If anyone has been through this, do you have any tips or links that you could share please?

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.

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

Very helpful, thank you both.

This is all so bloody daunting. I keep getting phone calls from people who just seem to start in the middle of sentences, assuming I understand the process, the jargon, etc.

However, I have just pinned down a senior social worker at the hospital who took the time to go through the process with me, for which I am extremely grateful as it helped me start to get my head around it all.

@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?

@FruHagen hospital are just waiting for a suitable nursing home place to be found for DM, as she is not a candidate for rehab.

She regained some swallow - so she no longer needs thickener in her drinks, but can only have pureed food. She can't walk, stand, or even sit unaided. She will need two people to provide care, 24/7.

Everyone I speak to tells me she is happy, due to her not having any understanding of how affected she was by the stroke.

Feel free to DM me if you want to.

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.

Did you have to get outside help with the process @Candleabra?

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'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.

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.

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".

That sounds pretty much like my mum post stroke @NormaLouiseBates so I am anticipating getting turned down for it as well.

It makes no sense to me that not being able to do literally anything for her herself means she isn't eligible.

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.

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.

the system is wrong, on so many levels. We should have decent care in place for all, so that the elderly can live out their lives with dignity, without family (daughters) driving themselves into the ground trying to provide that care.

This continuing care funding system seems to be nightmarishly tricky to actually access.

@notaflyingmonkey it's always the daughters isn't it? Always. I'm local to mum and my brother is 150 miles away so... 🤷🏻‍♀️

You might not get the continuing healthcare (ie fully funded) but instead might get funded nursing care which is £189 something a week. Apparently, the patient needs 60% plus of nursing needs to qualify for the continued funding. But as their needs change and nursing needs increase to the 69% you can have another assessment done.
My dad is in a nursing home after a psychotic break in the summer. He's in the final stages of Parkinson's, with dementia on top plus heart and prostate issues. He can't walk, or stand or change position (can't take his weight) is doubly incontinent and incredibly confused. But still doesn't qualify. Oh, and he's got covid! Honestly, I think it will take a nuclear bomb to finish him off, he's lost the will to live, has zero appetite and just wants to die. It's heartbreaking, and costing my mum £1200 a week for his home. However, they are excellent and we have absolutely no reservations about him being there, he really is being looked after well.

The powers that be just don't want to fork out for it, they make it difficult, as with welfare payments. With a nasty exception...

You see, in 2014 my mother was admitted to Epsom Hospital and nearly died, from a nursing home that had failed all its CQC criteria (Surrey Social Services knew of problems there and chose not to notify relatives.) Mum got put on Fast-track NHS Continuing Healthcare immediately - we didn't even have to ask for it! Wasn't that nice. Erm, after that oddly we found it hard to get any care setting, be it hospital or care home, to give her sufficient drink and when we prodded on the issue, things turned sinister.

It appeared that she'd been put on this thing because she'd been given three months to live. (She had advanced Parkinson's, btw) This corresponds to 'end of life care' not quite the Liverpool Care Pathway, but it seems if a care home resident or hospital patient is guesstimated to have around 3 months to live only, they can essentially be 'killed off' and this is done via dehydration and all round neglect. I think this is actually legal under NICE guidelines. Technically the family have to be notified but a) This came in under the 2014 Care Act so wouldn't have been applicable then b) They do what they want, they don't have to notify families really and c) If the family didn't know to get LPA in Health and Welfare for their parent I'm afraid they're not the decision makers for their parent's care anyway, once they're deemed to have lost mental capacity (a very vague area easy to exploit) so the State has full control.

For the next few years my sister and I had to visit Mum daily in the care home to give her drink as all our appeals on the issue fell on deaf ears. That winter in 2014 the fast-track healthcare thing was withdrawn, perhaps not unconnected to my whistleblowing the Surrey care home that nearly killed her to the local press. Surrey Council launched an attack on the family, timing it for Christmas as Social Services is won't to do, around the same time as the withdrawal.

Mum died in October 2017. Of course, she did worsen, as for the last few months she was on a PEG feed as her swallow worsened. We did apply for NHS Continuing Healthcare and got turned down. I now tend to see it as the 'freebie with strings' - if they grant it, they're sort of paying for your parent's demise, they get something back from it. Not saying that's everyone's experience, but it is ours, and otherwise it makes no sense because they really really don't like to grant it under normal circs.

We went along with it because I recall thinking, okay, you think Mum's got three months but I know better, so we'll take the freebie! Turned out I did know better about Mum, but not about what other State machinations.

We got it for my father, but the hospital were very supportive which I think helped. It did make it hard finding a home that would take him though as he had such a high level of needs. The local authority then had to barter with the home who wanted £1800/week. I think they settled on £1500/week in the end. He lived for about 8 months after that.
Good luck.

@frugalkitty we've been told that my Mum qualifies for that nursing care payment... the home she is in is costing £1800 a week so it's almost not worth it for 10%.

As others have said, the threshold is set incredibly high for CHC funding. Most people will be amazed at how severe the needs of the patient have to be in order to qualify. We went through the process with my disabled DD when she went from children's to adult services. She was totally immobile, non verbal, Tube fed, severe uncontrolled seizures, severe reflux and at risk of aspiration requiring regular suction, severely cognitively impaired, doubly incontinent - so basically requiring 24/7 care and we only just managed to get severe in enough categories to get funding for a few hours nursing care at home each week and around 30 nights respite a year plus a day care facility. It is incredibly difficult to qualify. Most people will qualify for the nursing element of social care but not the rest of the costs which have to be self funded if they have assets.

My mum qualifies for no help at all. She's bed bound unable to even lift her head, has to be fed as she can't lift her hands anymore. Completely unaware of where she is. We have private carers for her which is very expensive but luckily doable at the moment.

The support we have is a visit from the district nurse twice a week to dress her leg ulcer and they provided a hospital bed rather than us having to buy one.

It’s difficult to get any change over social care funding because to most people it’s “they’re trying to protect their inheritance”. No concern over why some people should, at random, pay 100% IHT while others pay nothing or at worst 40%!

The latest “we have sorted out social care funding” will have no effect on most elders because it takes 3years of residential care to reach the cap (accommodation costs aren’t included, and they’re a big proportion) and most elders don’t survive that long.

Hi OP, i dont have any real advice but can sympathise because my DH went through a similar situation with MIL. After a stroke she went downhill, then diagnosed with bowel cancer and was double incontinent, bed ridden etc. She stayed at home with 4 (2 people) care visits a day, some over night stays from Marie Curie nurses and my DH basically moved in to cover the rest. Eventually she did qualify for continuous care and it was fully funded but this was in her final few months of her life and was driven by the District nurse. We happened to be at MIL one day when she visited and DH broke down as he couldnt cope anymore, upto this point the DN thought MIL had several kids who were supporting as this is what MIL had told her. I dont know of this is the norm or we were very lucky to get an excellent DN.