Continuing Health Care - Retrospective Claim

[SeriesofUnfortunateEvents]

My mum had Alzheimer’s and was in a care home for 5 years. She died in May 2019. She was very poorly for the last two years – bed bound, non verbal. We paid for her care out of her savings. She was never assessed for complex needs. I believe my mum may have been entitled to NHS continuing health care and want to find out if we can retrospectively claim for this. I just wondered if anyone had ever done this? Thanks.

I briefly dealt with some of these cases at work (solicitors). They take ages but we got there in the end. You have to keep chasing them. I think most were successful claims.

So yes, you can claim retrospectively. I’m not sure if there if is a time limit.

I'm sorry to hear about your mum.

In my experience, these type of retrospective speculative claims are rarely successful.

Usually CHC appeals are when someone disagrees with outcome of a DST, there is some trail of CHC assessments and you are clear on the specific care domains/ issue that is subject to disagreement.

I'm.very sorry that you lost your mum.

I used to be involved in a lot of DST decisions, quite often people who had progressed to the stage where they were cared for in bed and were "compliant" with that did not meet the eligibility for CHC as their needs, whilst complex, were not unpredictable.

You say your mum wasnt assessed for CHC. but there is a checklist that has to be completed before the full assessment takes place. If you don't score highly enough on the checklist, you don't progress to a full assessment. It is import
mt to check if the checklist was completed as you mum might have been screened out.

There is a lot of information on line about CHC. funding. There's also a website called Beacon where you can get advice about CHC funding. (beaconchc.co.uk). They offer up to 90 minutes of free advice so it's worth ringing them and running through your mum's case.

Very sorry to hear about your mum.

If I can just share my own experience - we lost my mum in Sep last year. She did not have dementia but was very sick for several months before she died. During that time I asked for her to be assessed against the CHC checklist 3 times by 3 different HPC. 1 HPC refused to do the assessment, 1 HPC said they completed the checklist & mum didn’t meet the criteria, the 3rd HPC assessed mum & fast tracked her CHC application. This was all within the space of a couple of weeks. No HPC mentioned this funding to me prior to me asking for an assessment - it just happens I was aware of CHC through my work otherwise I would not have known the funding existed.

My point is that there seems to be a lack of information & clarity around this funding. Unfortunately I have a couple of friends whose parents are very ill, and neither of them were told about CHC by any of the numerous HPCs they have dealt with - both were repeatedly asked if their parents were ‘self funding’ though, so the lack of info does not appear to be due to any reticence re discussing financial issues relating to care.

I think it is worth exploring whether you could make a retrospective claim with someone like Beacon. You have nothing to lose and may at least gain some insight in to the decisions that were made for and about your mum while she was ill.

I think more and more families are having similar experiences to you, and I hope more people become aware of this issue and the consequences as a result. Most of us will not have heard of CHC, checklists & assessments until we are least able to devote time & energy to navigating the complexities of the system - that is until we are dealing with the serious illness of a loved one and all the emotional & practical demands of that time. There should be more information and support for patients & families in this situation, and a obligation for HPCs to be open and discuss all options and issues with patients & families, so that families are not left with questions like yours.

1 HPC refused to do the assessment, 1 HPC said they completed the checklist & mum didn’t meet the criteria, the 3rd HPC assessed mum & fast tracked her CHC application. This was all within the space of a couple of weeks.

Helpdesk that paragraph alone tells me your mums health was changing rapidly and doesn't mean why you think it means.

It's not uncommon for someone not to get a positive checklist due to 'complexity needs' grounds, but to (often later) meet the separate fast track criteria, which does not need CHC checklist. They are CHC for different reasons and the latter supercedes the checklist route.

Fast track is prognosis right at the very end stage and rapidly deteriorating, a doctor or consultant decides when someone meets fast track criteria for CHC funding instead of checklist.

Didshereally - with respect, we will have to agree to disagree about that. My mum’s situation did not change rapidly in the space of these couple of weeks - she was desperately sick at the time of the first request for an assessment & still desperately sick at the time of her fast track (I know, I was there, you were not). The only thing that changed during that two weeks was that her family were put through two weeks of additional stress and worry.

I don’t want to hijack this thread, so will leave it there

There should be more information and support for patients & families in this situation, and a obligation for HPCs to be open and discuss all options... so that families aren't let with questions like you

I heartily agree with this.

Ime Many community (& some hospital) HCPs aren't sufficiently trained in CHC. The training is offered and runs regularly, but not all GPs , nurses see it as important to make time to attend refreshers or updates, or even their role to complete CHC checklists or the form for fast track, even if it's the GP saying the person is terminal and has very little time left.

In hospital it's only towards discharge date that CHC screening (checklist) is done, when person is medically fit for discharge - because it has to be done on what long term needs they have not part of the acute episode that's been treated and resolved.

If it is positive (Chc checklist) they tell family, as that starts DST process... if not Chc eligible checklist, it's easy to see dynamics of how it's mentioned only in passing..(as 'not CHC'.. 'didn't screen in' or forgotten).. instead of a clear proper chat explaining to families. If there's a SW involved they usually good at explaining it,

However if someone is in a nursing or residential home, self funding, who is the HCP who will looks at CHC ?

GPs don't do see their role as this, nurses visiting residential home could but don't, paid nursing staff in NH can and do - but CCG CHC teams won't agree to accept Chc forms completed by privately employed nurses as they are not NHS (HCT or CCG) staff.

SWs will check this in review if LA funded. You only do new Chc checklist if there is significant (huge) deterioration. (Otherwise previous Chc checklist outcome still stands..)

If self funded, Families or NH staff need to identify if person might need Chc screen in a NH. Ime experiences nursing home managers are usually quite good at asking for this on back of massive deterioration (it would be CCG FNC (free nursing care) nurse to do a CHC checklist )

Helpdesk
What changed was the doctor's clinical decision, who decided over the 1-3 weeks that your mothers health prognosis was sustained, unlikely to improve, and rapidly deteriorating enough to meet fast track CHC criteria.

I'm not 'wrong', I'm explaining how it works to you and how it can seem confusing if you don't understand how the two different CHC criteria streams work. Feel free to listen to HCP expertise in this area or not.

Your example of mum, told a sad story of her rapidly deteriorating health, but was also an example of how CHC worked the way it should, not of how they got it incorrect.

1st HCP- it was too early to screen
2nd HCP- ineligible CHC checklist on complex grounds so no DST
3rd HCP- eligible under fast track, different CHC stream because they've asked consultant to review* also against fast track criteria.

That consultant hasn't just signed a form, they've monitored for a while waiting for outcome of tests/ treatment, to observe whether anything else can be done to improve prognosis, before making clinical decision mum really has become fast track criteria. In layman's terms: HCPs do not view patient as fast track or give up on hoping patients can be improved until ALL hope (of any even a slight recovery) is lost.

I should have said 'confident as attended all possible recent CHC training' rather than 'sufficiently trained' in my earlier post.

OP was your mum in a nursing or residential home?