Getting continuing healthcare

Are you claiming attendance allowance (£89 per week) and funded nursing care - no where near as much as CHC but they do help with some of the costs. Funded nursing care is easier to get.

@SylviaTrench, sorry I missed your reply yesterday. I am definitely going to appeal I have now decided... the way I see it, we've got absolutely nothing to lose.

In our area less than 10% of people who pass the initial checklist will get CHC.
The appeal success rate is between 20-25%

When my mother was seeking attendance allowance 40 years ago, she had to appeal. She reckoned they turned everyone down on the principle that if you didn’t appeal you weren’t really serious about your application. Looks like there’s a bit of that thinking about CHC

It’s difficult but not impossible. Have a look at the CHC checklist online and see where they fit into that. They’re a key which indicates if a full assessment is needed. A full assessment is called a DST and you can be supported by your local adult social care team

[quote NormaLouiseBates]@SylviaTrench did you get it awarded on appeal? [/quote]
Yes I did.

Now my dad has died I’ve had more time and mental energy to clearly look at the process. I can see mistake after mistake after mistake by the staff concerned. At the time I was just so worried about my dad that I didn’t know which way was up. I think that’s part of the problem that people don’t necessarily know how the care, and CHC, systems work until you need them but then you’re often trying to juggle so many plates that the idea of trawling through the whole process is just too daunting.

I am a palliative care nurse and the process is becoming increasingly difficult and frustrating. When I apply for patients it's usually always denied now. It takes hours of work to justify why someone should qualify.
I absolutely hate it. It's soul destroying when my patients are so unwell and have a short time to live.
I wish you the best of luck x

Sorry, MUM!

Deeeee breath with this one.

CHC is the NHS agreeing to pay for care on (more or less) the basis that the patient needs so much nursing oversight that if he wasn't in that home with that nursing care he'd pretty much have to be in hospital or would have HCPs visiting him at home several times a day.

The most important thing is that your dad gets the best quality of the care that he needs. CHC funding is unlikely to make any difference to the care he gets, it's often mostly about who pays for it (you/the NHS/local council).

So you might also/first need to put some focus and emotional energy in making sure he gets into the best home for him with the best care for him right now. If he has money/a property then you have some control over this.

Just a thought.

CHC funding has virtually no relationship to the care that is put in place, it’s literally just about which funding pot the money comes from.

Beacon advocate for people through the process and do get good results. But yes, as others have said the threshold is very high.

With dementia the highest chance is if your relative scores a ‘severe’ on cognition and behaviour. Two ‘severed’ generally means you should get it.

@SylviaTrench did you get it awarded on appeal?

Because they were so insistent that I wouldn't get anywhere it made me a bit suspicious, if they knew I wouldn't win then what was the problem?
I must have changed my mind half a dozen times because it did sound complicated, I couldn't afford to use a specialist firm either.

Then I decided that I had nothing to lose, I just needed to knuckle down and do it. I wanted to put my own mind at rest that I'd done everything I possibly could for my dear old dad. I knew at some stage I might be facing the same thing again with my mum, or in-laws, or elderly Aunts, so another part of it was just wanting to learn as much as I could so that if there was a next time then I'd be fully armed.

The Ombudsman did a report in November 2020, Getting it right the first time, it's interesting reading. IIRC it's basically saying that staff should ensure they are making the correct decisions on the initial assessments because otherwise their time is taken up with dealing with past decisions on appeal.

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.

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.

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%!

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.

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.

@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%.

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.

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.

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.

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