Continuing healthcare being withdrawn

Long story short my Dad was admitted to hospital Boxing Day 2021. Due to, I presume, covid and the care home going through 101 managers, he didn’t have a continuing health care assessment until November 2022. This was all pretty straightforward and funding was given.

He has deteriorated since then and that is not reflected in his recent review, for example communication was previous rated high and now is rated moderate despite the fact at the time of the last review he would recognise his family and could speak with them, albeit nonsense, but now doesn’t know who we are when we visit.

The outcome letter says funding will be withdrawn in less than 3 weeks. What do we do now???

Appeal, in writing, ask what needs have reduced? We’re you present at the reassessment? Sent a copy of the outcome?!


I wasn’t there, I’m struggling to get more time off work as there’s been so many meetings / cancelled meetings its burned through all my annual leave and goodwill with my manager.

My Mum was there but if it was anything like the first review I doubt she would have followed much of what was being said.

I’ve been sent a copy of this outcome but I’ve never had a copy of the original outcome. I only know they’ve changed some of the gradings because they have what they were last time in the document for this time round.

What’s the process with the appeal, if an appeal goes in does it ‘stop the clock’ so to speak? Just thinking that nothing seems to happen fast. He went into the care home, and we were not given any other option by the hospital, at the start of February 2022 and didn’t have an initial assessment until November 2022 and then a review at the start of June 2022 for which they only sent the decision this weekend. If an appeal process takes weeks or even months what happens in the interim?

Even if we weren’t appealing doesn’t it next of to the council for a means test, I can’t imagine from any of my dealings with them that would be completed in 3 weeks.

Quick summary of the changes:

They’ve downgraded nutrition from High to Low based on the fact he’s stopped losing weight but he is still at a low weight, far lower than when he went in.

Falls has gone from High to Moderate which I don’t understand as there is zero chance he could support himself.

Mobility has been changed from High to Moderate despite the notes from the last review meeting saying “High need: There are no significant changes in care needs for this domain.”

Psychological has moved from Low to Moderate but says he is not prescribed medication when he is currently on antidepressants.

Cognition is severe on the original assessment, severe on the review but high on the decision. Frankly his cognition is significantly worse now then when they original assessment was carried out. It also says he recognises family members which is not correct. More often than not he recognises my Mum, with me its 50/50 at best.

Behaviour has increased from moderate to high as he is now absive to staff, throws things etc

Medication has changed from low to high but doesn’t mention that he sometimes has to be given medication to calm him down which can only be given by the nurse so therefore needs that level of care to be available 24/7

Those all appear to be good reasons for appeal. We’re you invited to the review, tell them you couldn’t attend? Did they arrange for an advocate? If he has limited funds, under £30,000, the decision isn’t worth challenging, but if over that amount, definitely appeal. There is an organisation called Care to be Different which might help. Read up all you can about CHC. Ideally print all the relevant sections and then highlight the relevant sections. If he is self funding he should be entitled to Attendance Allowance and Funded Nursing Care.


First off, let them know you’re appealing straight away and that you will follow up with reasons later.

Contact the Carers UK Helpline - the email address is the best for this one: - and then follow this link:

NHS continuing healthcare decision support tool guidance - GOV.UK (

It’s the basis of every decision made, and often “stretched” a bit. It sounds very much as if that’s what has happened here. On the nutrition front, for example, weight stabilising is not enough if there is a danger that the trend will reverse if support is reduced. My understanding is that it has to remain at the same level to prevent deterioration.


An advocate? Basically they left me a message while I was at work, where I can’t take calls, the day before (or possibly two days before) the meeting. I called back but it went to voicemail and they didn’t reply to my message. Meanwhile the manager of the home told my Mum about the meeting and asked if she would be attending, which she did thinking it would be a short ‘he’s worse than last time you were here’, type thing where it was a complete review that took an hour plus.

He has the house, jointly owned with my Mum who still lives there. About £15K in a joint account, which his pension goes into, and then that’s about it. My Mum has some money, not sure how much but we’re not talking 6 figures or anything like that, in an ISA which is her inheritance from her parents that she’s never really touched.

On the grapevine we have heard since the assessment that a 3rd party was bought into do the reviews with the aim of getting the amount paid our reduced, ie being much stricter, but they ‘are gone now’. Not sure what happened but its taken 3 months to get the results of the review back

There’s pretty much zero information provided on how to appeal other than a line saying you can’t appeal. Will need to do some digging to find out what they actual process and timescales are plus what happens regarding funding in the meantime

The CHC use the ’ fact’ that needs are being met in assessments. I had this problem and had to fight that for my late husband that some of his needs were not being met. He had suffered strokes vascular dementia and other health issues to do with his bowel. It was that need that they couldn’t manage. The day after the meeting he was once again taken into hospital.
So as adviced, appeal, talk to staff to find out any issues they may have when caring for her ie non compliance.
I do hope the funding isn’t taken from her but it’s the matter of looking to change the needs to high as much as possible


Ok. In which case tell them that you feel the review was carried out with the sole purpose of cutting costs and not in the best interests of your father, and request a meeting to discuss the review and the results of it where they can explain why they made that decision.

On a separate note, I’m pretty sure there are no grounds for them to tell you that you can’t appeal, but I’ve been out of the system for a few years. Contact the helpline urgently.

1 Like

This is a good point, in areas where an issue is being managed by the care home, such as my Dads weight, then that need still exists and if you removed the management the initial problem would return.

The appeal process seems as clear as mud. Literally all it says is:

“If you disagree with this outcome and wish to appeal this decision, please contact us at the
address above within 6 months of the date of this letter. Please include your rationale for
disagreeing with the decision to enable us to consider the points you raise.”

A quick google seems to suggest that there’s no standard process so quite how you’re supposed to navigate the system with only that to go on I don’t know

Already had multiple tearful phonecalls from my Mum this morning, not sure how she’s going to cope with potentially months of this as she was already struggling.

As expected she has come to the conclusion that the house will be taken off her. Just to be absolutely sure as she lives at the property I’m correct in thinking that is disregarded in any funding calculation?

Her other concern is what happens while the appeal is ongoing. Looking at information online there’s sites that suggest if you need to go through several stages of the process it can take a year or more. What happens about funding while that process is ongoing as the decision letter states funding is to stop in 3 weeks.

One final question. Is it worth getting a lawyer involved at this stage. Obviously don’t want to throw money away but this also seems like an absolute minefield and don’t want to miss something important.

Just reading through some info on the Age UK site and found this:

“The primary purpose of the review should be to make sure your care plan is still suitable and meet your needs. It’s expected that in most cases there’ll be no need to reassess eligibility”

Is this an angle to pursue. The impression I get is that they are looking for reasons to remove funding rather than ensure the best care for my Dad. Not sure how to pursue that angle as they seem to only work off their framework where things like that are more wide ranging.

Also the thought occurs that when my Dad was moved to the home from the hospital at no point was this presented as optional to us. His consultant told me that care at home would not be possible due to his needs and he was in a far far better state at that point. Surely if its something you’re going to be charged for there should be an element of choice both in terms of treatment and location.

If mum is over 60 and living in the house, then it’s value is disregarded anyhow, and as they have under £46,000 between them, then Social Services should pay for some or all of the fees, so reassure mum, not to panic. Do you have Power of Attorney for mum? It would be better if you could deal with this, to make sure it’s managed properly.

Point out to CHC that the meeting was totally unlawful as you should have been there to support mum, a phone call the day before is simply not good enough. Suggest they hold a lawful meeting, when you can attend, write your own agenda and comments, print them off and circulate them to everyone at the beginning of the meeting. Every time they use initials for anything, ask them not to do that, it may be OK internally but not for a meeting involving you (even if you know what the stand for). They will keep doing it, if you pick them up on it each time it makes them look terribly stupid!!!


She’s 75 so that’s one thing not to worry about. I do have power of attorney for Mum and will be doing my best to deal with it. I work full time and I’ve had so many meetings & assessments, not to mention meetings cancelled on the day because of a lack of staff or because my Dad was so unwell it was felt pointless to continue that I’ve burnt through my annual leave and my employers sympathy so getting more time off is tricky at best.

That’s really why my Mum attended the meeting in the first place. Even if I can get time off I need to get more notice than their notification allowed and we were under the impression it was to be a quick review more in line with ensuring he was getting the correct care rather than looking for a reason to remove funding.

Dave I have just read that your dad can become aggressive. Do the staff report in his book when he is aggressive? One of the better managers in my hubby’s nursing home told me she expects it to be written in detail. If the resident has said f off or racist ect she expects it to be written word for word as said. This apparently (?) helps the assessors to see how fully. It’s a high need if residents are aggressive verbally and physically. Through no fault of the resident.
Everything should be recorded so assessment can be made on the last 3months. Well that’s how it was


Oh yes, we’ve had all the joys of this. He’s verbally aggressive, including making racist and sexual comments to staff, and he’s also been physically aggressive including hitting staff and throwing things at them.

I don’t recall ever seeing that sort of detail in his book. The homes paperwork generally isn’t great. They’re massively understaffed and there’s a constant stream of new managers coming and going.

It really should be recorded. For everyones sake. Can you ask them to record more thoroughly or even insist. My daughter’s and myself used to ask to read his notes on a regular basis. They didn’t always like it but it was our right. Not always pleasant reading especially as it wasn’t his nature but more than once an error was made. For instance a member of staff forgot to take his dinner to him( yes!). I was there and had to ask. To cut it short I said don’t bother, just give me his pudding now as he always ate that. Looking at the book two days later it said all dinner eaten. Pardon. He didn’t have any. I’m explaining this as I really feel short staffed or not records should be kept on all aspects. Shouldn’t have to push but needs must

Are you expected to use your annual leave? As a carer you are “disabled by association” and they should be making reasonable adjustments for you. Talk to the Carers UK helpline about this, and the CHC situation. As employers, the home should be recording racist and sexist comments, to protect their own staff.