Is my Mum likely to get CHC ?

[StiffyByngsDogBartholomew]

Dad is getting to the point where he can no longer cope with Mum at home. They currently have two care visits a day (was 4 but he refused the visits in the middle of the day as they were pointless) which are funded by SS.
Mum is paralysed, catheterised which she cannot empty herself, unable to speak, has a cocktail of medications which have to be given at various stages throughout the day. She has heart failure and kidney problems as well as an unknown level of brain damage from the stroke she had in 2020. I think soon she may get to the point where she will need to be hoisted into bed etc although at the moment she pulls herself up onto a Sara steady

I've had a look on the screening questionnaire which looks like she might be funded or at least eligible to apply but would appreciate any experiences.

Unfortunately having a catheter wouldn't mean she qualifies - there are people working full time who have catheters, stomas, urostomy etc

This is my experience as a DN too

This lady's mum sounds like she has care needs rather than nursing needs exactly

@Blushingm continence issues such as frequent catheter washouts by DN team was indicated as high risk on the continence section of the CHC guidance. It blocks on a regular basis and mum is also prone to UTIs. She tugs Also remember that my mum is 80 with aphasia and immobile in a wheelchair, she can't even open the catheter tube to empty it for herself so not quite the same as someone working full time.

Catheters block all the time - it's a risk with having a catheter. There are numerous reasons why they block. Encrustation, mucous, positional, infection - the list can go on.

But what I'm getting at is having a frequently blocking catheter does not qualify someone for CHC. Neither does age.

Your dad refusing the allocated care calls and only allowing 2 out of the 4 is not good - it's an indication that complexity and unpredictability of her condition isn't that high. If they were struggling and having the 4 calls that suggests that the plan needs to be reassessed

It harsh but that's how it is

That absolutely is a nursing need and sounds like it can be a bit unpredictable but it also needs to be complex and intense to manage which it doesn't sound like it is particularly.

A person's diagnosis is (mostly) irrelevant to CHC, the scoring is entirely based on how difficult someone's care needs are to manage

From your OP she would probably have some low and medium needs in other domains as well but that wouldn't be enough to indicate a primary health need for CHC.

That’s doesn’t sound like he will qualify, as he doesn’t need a qualified nurse to manage ‘complex’ needs. He sounds a bit like my stepfather, whom we applied for 18 months ago. He is subject to a DOLs order, so cannot legally leave is nursing home. He has been violent, attacked staff and slapped other residents.
OP, regarding funding, their home won’t be taken into consideration if there is someone else living there who’s over 60. Any joint savings would be deemed to be 50/50 so half will be ignored. Their income (pensions and carers / attendance allowance) would be taken into account. The remaining deficit would be funded by the Local authority.

That sounds hard. So what happens in the meantime. Are you expected to fund it privately or is he in hospital.

My brother has CHC. Only granted after my parents had to refuse to allow a discharge from hospital given they were in their 70s and his degenerative neurological disorder meant he was being physically violent alongside requiring 2 to 1 care 24/7. Do read the scoring criteria that someone posted up thread, but your dad really isn't helping by refusing help. I was getting to pressure to help with care to avoid DB "having" to get CHC and it was only when I pointed out I lived 100 miles away with 3 kids and a full time job that they accepted that he had needs greater that SS could provide.

He's now in his own house with 2:1 carers 24/7. Parents still doing a lot and its not perfect in any way shape or form, but managing.

I'm so sorry, sounds an outrageous decision. Were you aware that you can get 1.5 hours free advice with your appeal from BeaconCHC? I found them SO helpful when I was appealing against the decision with my mum's claim. They have a number of experts who can guide you through the points you need to emphasise in your appeal, but you have to wait a little while for an appointment as they are very busy.

I made the mistake of contacting one of the private companies (Compass chc) for an assessment of my mums likelihood of qualifying for funding when she first went into a care home and their supposed expert really got my hopes up to the extent that I was persuaded to employ them to handle the claim on my mums behalf. They didn't do very much for the amount they charged, and I was allocated a relatively junior member of staff who spoke twice during the three hour DST meeting. The produced a fairly good written submission, but this didn't arrive until the day of the council's Panel meeting, by which point there wasn't enough time for the Panel to read its contents. Compass charged about £5000 for their service and I felt very aggrieved and misled at the service I received from them. Beacon on the other hand we're brilliant and we're really helpful.

Good luck with your appeal.

I don't know if it's still in use but up to less than a year ago the evidence on which the CHC decision was made was captured using the CHC Decision Support Tool which should download from that link; if not, google and choose the link which is headed "Decision Support Tool from NHS Continuing Healthcare" not the one headed "NHS Continuing Healthcare decision support tool" which seems to only give guidance, rather than the form itself.

The form is a rather shocking exposition of just how non-functioning you can be and yet still be alive.

@Smithstreet is absolutely correct - if your dad still lives in the home, it is disregarded for the financial assessment. There is no charge put on it. So your mother's financial contribution would be based on her savings and her income. You can google the details. You may have problems if your dad cannot continue to live in the house on his income alone. and if that's looking to be the case you would need professional advice. In theory if the house is sold, her half would become available for nursing home fees, but I have seen mention that it may be possible for him to downsize and not have to release her share of the equity - hence the need to get professional advice.

LAs pay a lower rate for care homes and nursing homes (self payers may be paying up to 40% more, thus in effect subsidising the LA-funded residents) and therefore will not be able to place people in the more expensive homes. But price is not correlated with quality of care. Important is a good manager leading a well motivated team. But your Dad may need the trimmings of a more expensive home to assuage his guilt - in that case, family would be expected to pay a "top-up". So try to persuade him out of this. My dad is in a less expensive home, with smaller rooms and not looking luxurious, but he has been well looked after, is known (and liked) by all the staff, and is happy there.

@MereDintofPandiculation thankyou so much, yes I totally agree with you about fanciness of surroundings not necessarily correlating with quality of care. When she had to have respite recently we looked at various places, some of which were v expensive, but the best reviews were for a place that took LA funded residents. It was really nice and the management team had been there for decades. We were very happy with the care she received and as she wouldn't leave her room the entire time she was there any fancy facilities would have geen a total waste of money. If we were looking at full time care we would hope to go back to them.

He was is hospital for 8 months. Moved to a dementia specialist nursing home a few weeks ago. I took us ages to get to the bottom of finances (as no-one seems to know anything even if it is their job). They will take half of my Dad's private pension and all of his state pension once his savings have gone which won't be long. Some homes also charge a top up fee as well which has to be paid by someone else- my mum or me or my brother. Some we looked at were an extra £1500 a month on top. The main problem we had was that he was 1:1 in hospital because he tried to get out of bed and the wheelchair. No nursing home wanted to take on 1:1

Thank you, that's really helpful 😊

Dies she need frequent nursing decisions. If care is stable but needs nursing skill it doesn't count e.g. dressing changes, routine catheter emptying, equipment use that doesn't need skilled judgement. What you need to demonstrate is that decisions need to be taken on the spot about appropriate care/changes to care by a person with nursing skill and that is a hard bar to cross.

My outlook on CHC is negative.
Dm couldn't eat, talk, walk, dress herself, was double incontinent and we didn't know at the time but 5 days from dying. She was refused in the assesers words
'mum was to ill to be assessed'
Mil had heart failure, kidney failure, couldn't walk, double incontinent and her asseser refused because she wasn't ill enough.
These were different health authorities so it seems to be they try and refuse everyone and you have to object.
Both were in different nursing homes and both managers did tell me that they would be surprised if they did get it. I asked both managers if they had any clients that had received CHC and between these homes there was only 1 person. Didn't know who they were so no idea how or why they got it.

Mil had heart failure, kidney failure, couldn't walk, double incontinent and her assessor refused because she wasn't ill enough Probably because she realised they couldnt do the assessment in time. “Too near death” rather than simply “too ill”

Yes but OP is right that frequent blockages and wash outs are specified and do lead to a higher score.

I'd also agree she wouldn't meet criteria for CHC.

It's not the level of need that counts, it's the complexity. Someone with very high needs who is bed bound, for example, is often much easier to care for than someone with lower needs, because everything is just done for them by nursing staff/carers.

Someone with quite low physical needs, but who is aggressive, would likely get CHC due to the complexity of caring for them

I've had quite a few patients who lose CHC at their review because they've gotten worse and so are now easier to care for (which always seems counterintuitive)