CHC (Continuing Healthcare) support thread

Suzysheep01

Registered User
Jan 14, 2023
174
0
No idea I'm afraid as mum is yet to have hers. However, there does appear to be a pattern with reviews being used to withdraw funding due to the person suddenly becoming miraculously better in an originally higher scored domain. The guidance is very clear in that the review should only be used to ensure the care package in place is still sufficient and that a new MDT should not be requested unless there is a significant change in that persons needs. As with everything CHC the guidance is often ignored in favour of an individual ICB's 'policies'.
Interesting, thanks.
it seems like they are instructed to cut costs whenever and wherever they can. It’s so stressful for relatives, especially as it’s only 3 months after the award! Sigh.
 

whoknkows

Registered User
May 16, 2023
68
0
DH joined initial meeting as he is calling it, but was called DST meeting in his email, yesterday. A nurse who knows MiL and is at the nursing home, and another person, whose name wasn't on the original note to DH, went through all domains, I had done a checklist and comments for DH on every domain, so he added a few points e.g. the recorded falls in her medical records don't include several others in last 12 months where 999 wasn't called etc. but as he explained it is setting dependent so they were more concerned about the liklihood of a fall at the nursing home and whether it meant 24 hour monitoring. i.e. everyone knows it is too risky to send her home. Overall they said at least 5 Bs, with one a possibly being an A- the possible A being psychological and emotional - the assessor asked if MiL could be brought in on the online call (teams/zoom) so the nurse organised this. I think the assessor was a little shocked as MiL started shouting, being rude to the nursing home staff, who she knows and who is really kind to her, she bordering abusive . She thought she had been taken to court and that DH was in prison. It was clearly very distressing for her and likely lead to a bad afternoon for the staff. BUT the psychiatrist hasn't seen this behaviour yet on their visit, so until they see if and write it up they cannot grade A or B?

DH was told that only 20% get a yes from next stage even with a positive referral due to enough Bs to refer. He was told if it was a no from next stage (ICB) the cost of care would go back to Social services to find a way to pay. That is not how I see it, I thought it would go to nursing funding, then back to the financial assessment for permanent versus respite? MiL doesn't have carers allowance, or if she does we have not been informed. Seems like it will be another 5 weeks or more before we have further information.

What was also interesting was that I thought mobility might be an A, but it isn't because although she needs hoist, wheelchair etc. she 'cooperates' when put in the hoist. But on a bad day she doesn't and there have been occasions when she has been left in bed all day because of rectal prolapse or when she was really aggravated. Ce La Vie. Time will tell.
 

Chizz

Registered User
Jan 10, 2023
3,148
0
Kent
DH joined initial meeting as he is calling it, but was called DST meeting in his email, yesterday. A nurse who knows MiL and is at the nursing home, and another person, whose name wasn't on the original note to DH, went through all domains, I had done a checklist and comments for DH on every domain, so he added a few points e.g. the recorded falls in her medical records don't include several others in last 12 months where 999 wasn't called etc. but as he explained it is setting dependent so they were more concerned about the liklihood of a fall at the nursing home and whether it meant 24 hour monitoring. i.e. everyone knows it is too risky to send her home. Overall they said at least 5 Bs, with one a possibly being an A- the possible A being psychological and emotional - the assessor asked if MiL could be brought in on the online call (teams/zoom) so the nurse organised this. I think the assessor was a little shocked as MiL started shouting, being rude to the nursing home staff, who she knows and who is really kind to her, she bordering abusive . She thought she had been taken to court and that DH was in prison. It was clearly very distressing for her and likely lead to a bad afternoon for the staff. BUT the psychiatrist hasn't seen this behaviour yet on their visit, so until they see if and write it up they cannot grade A or B?

DH was told that only 20% get a yes from next stage even with a positive referral due to enough Bs to refer. He was told if it was a no from next stage (ICB) the cost of care would go back to Social services to find a way to pay. That is not how I see it, I thought it would go to nursing funding, then back to the financial assessment for permanent versus respite? MiL doesn't have carers allowance, or if she does we have not been informed. Seems like it will be another 5 weeks or more before we have further information.

What was also interesting was that I thought mobility might be an A, but it isn't because although she needs hoist, wheelchair etc. she 'cooperates' when put in the hoist. But on a bad day she doesn't and there have been occasions when she has been left in bed all day because of rectal prolapse or when she was really aggravated. Ce La Vie. Time will tell.
Hi @whoknkows

Thanks for the detail in your post. Really interesting.
I also thought that if its a no, then there should be offer of at least nursing funding. You better re-read the guidelines that @Dave63 put up the link. "They" don't always get it right, and you know you have to fight for everything every step of the way.
Wishing you strength in these difficult times.
 

Dave63

Registered User
Apr 13, 2022
354
0
DH joined initial meeting as he is calling it, but was called DST meeting in his email, yesterday. A nurse who knows MiL and is at the nursing home, and another person, whose name wasn't on the original note to DH, went through all domains, I had done a checklist and comments for DH on every domain, so he added a few points e.g. the recorded falls in her medical records don't include several others in last 12 months where 999 wasn't called etc. but as he explained it is setting dependent so they were more concerned about the liklihood of a fall at the nursing home and whether it meant 24 hour monitoring. i.e. everyone knows it is too risky to send her home. Overall they said at least 5 Bs, with one a possibly being an A- the possible A being psychological and emotional - the assessor asked if MiL could be brought in on the online call (teams/zoom) so the nurse organised this. I think the assessor was a little shocked as MiL started shouting, being rude to the nursing home staff, who she knows and who is really kind to her, she bordering abusive . She thought she had been taken to court and that DH was in prison. It was clearly very distressing for her and likely lead to a bad afternoon for the staff. BUT the psychiatrist hasn't seen this behaviour yet on their visit, so until they see if and write it up they cannot grade A or B?

DH was told that only 20% get a yes from next stage even with a positive referral due to enough Bs to refer. He was told if it was a no from next stage (ICB) the cost of care would go back to Social services to find a way to pay. That is not how I see it, I thought it would go to nursing funding, then back to the financial assessment for permanent versus respite? MiL doesn't have carers allowance, or if she does we have not been informed. Seems like it will be another 5 weeks or more before we have further information.

What was also interesting was that I thought mobility might be an A, but it isn't because although she needs hoist, wheelchair etc. she 'cooperates' when put in the hoist. But on a bad day she doesn't and there have been occasions when she has been left in bed all day because of rectal prolapse or when she was really aggravated. Ce La Vie. Time will tell.

If they were mentioning scoring of A's and B's then this was an initial checklist assessment not a full MDT assessment. Full MDT assessments are scored differently using Low, Moderate, Severe, High and Priority.

If she scored 5 B's then that is a positive checklist and it should be forwarded to the ICB for a full MDT assessment.

With regard to the assessor asking for your MiL to join the call, what on earth were they thinking. Completely inappropriate.

Don't get bogged down with people telling you only 20% get this, that or the other. There's a process, it's in black and white, and it's your job to make sure they stick to that process. You're going to have to fight, argue and at times tear your hair out in frustration. Don't let social or ICB's try and lead you down a path of their choosing. This is about money and they don't like giving it up.
 

whoknkows

Registered User
May 16, 2023
68
0
Dave63 thank you again, it did confuse me because I was looking for the scoring using, low, moderate etc. but the email to DH called it DST meeting.

I agree about it being completely inappropriate, all I can think is that she didn't thought nursing home were exaggerating, they have kept a mood record which I assume they referred to, but have not had the visiting psychiatrist witness her turns. I remember, and have diarised it, on one of my unofficial care visits when she was sent home by the hospital deemed to have capacity, she yelled 'you are an awful daughter in law, you are awful with cripples'. In between some nonsense about the people in her house stealing chickens. These outbursts have been going on for many months, but are unpredictable. Maybe the assessor had seen capacity was declared 4 month's ago and couldn't understand what she was being told, well she certainly saw someone without capacity!

Even now MiL's speach is is so clear when she is calm and she is relatively articulate so she sounds believable - but she is currently telling all the nursing staff that all her children are dead. When we visit today and another son tomorrow, I am expecting tears and confusion.

Oh I agree, and I said just that to DH, let's just go at their pace, not rush anything whilst she is being charged for respite care and be prepared for a possible fight at a later stage.

I have been asked to buy her some long socks so that she can't reach down and remove the dressing from her infected wound - off to buy those before we visit.
 

whoknkows

Registered User
May 16, 2023
68
0
We got tears and then she asked us to kidnap her. It was sad because she keeps asking if she is there to stay and says she doesn't want to be. She forgets she can't walk and tells us she can and does, she has no recollection of the teams meeting and any questions or seeing DH on the screen - in a way that is a good thing as it unsettled her so much. We can see her wound is weeping or bleeding through her socks, it is 7 months since the surgery and she is back on antibiotics again. Be interesting to see the score on skin, which I think was a B in meeting.
 

HartleyHugs

Registered User
Feb 27, 2022
112
0
Hello, I can't believe I'm writing this but at the second attempt I was successful in getting chc funding for my mum! It started on August 10th. But I wonder if anyone knows what happens at the 3 month review? Do I have to go through the same hell as the meeting on the 10th, it was without a doubt the hardest thing I have ever had to do! Or is it more a case of a quick call/email to see if anything has changed?
I'm really grateful to all the help and support I got from other people on the forum
 

Dave63

Registered User
Apr 13, 2022
354
0
Hello, I can't believe I'm writing this but at the second attempt I was successful in getting chc funding for my mum! It started on August 10th. But I wonder if anyone knows what happens at the 3 month review? Do I have to go through the same hell as the meeting on the 10th, it was without a doubt the hardest thing I have ever had to do! Or is it more a case of a quick call/email to see if anything has changed?
I'm really grateful to all the help and support I got from other people on the forum

Hi @HartleyHugs It's a right old drama fighting for this funding so well done on getting it second time around.

Page 24 of the PDF on the link below details the review process.

My mum got her CHC awarded 4 months ago and hasn't had a review yet. Mind you the nursing home haven't been paid yet and mum hasn't received her reimbursement for 2.5 years of care home fees either. We don't mind waiting for mums reimbursement but it really angers me that the ICB must think care homes run on rainbows and unicorns.

 

nitram

Registered User
Apr 6, 2011
29,925
0
Bury
Hello, I can't believe I'm writing this but at the second attempt I was successful in getting chc funding for my mum! It started on August 10th. But I wonder if anyone knows what happens at the 3 month review?
Well done!
Just make sure good records are kept in preparation for whatever may happen in 3 months.
 

HartleyHugs

Registered User
Feb 27, 2022
112
0
Hi @HartleyHugs It's a right old drama fighting for this funding so well done on getting it second time around.

Page 24 of the PDF on the link below details the review process.

My mum got her CHC awarded 4 months ago and hasn't had a review yet. Mind you the nursing home haven't been paid yet and mum hasn't received her reimbursement for 2.5 years of care home fees either. We don't mind waiting for mums reimbursement but it really angers me that the ICB must think care homes run on rainbows and unicorns.

Thanks for this I'll have a good read in the morning. Thankfully the care home seem to be ok, I had an email today with the adjusted fees.
 

Dave63

Registered User
Apr 13, 2022
354
0
That's a good shout, I'll definitely keep hold of everything and keep updated with everything from the care home and our visits

The review is only supposed to focus on whether the package of care is still sufficient to meet a persons needs and not eligibilty. However, a new MDT can be requested to determine eligibility but only if there is a significant change in a persons needs (ie, they may say a particular domain has reduced in it's severity).

You can let them know that you want to be present when any review is done and it's probably a good idea to take a copy of the DST to make sure the review is based on the needs scored within it. If they try to down play a certain domain you can pull out the DST and ask them to explain in what way it has changed.

As @nitram says make sure the care home records are kept upto date as these will give a much better reflection of her true needs compared to the snapshot of a relatively short review.
 

LostLiz

Registered User
Sep 3, 2020
19
0
So this afternoon I have a meeting with the Care Home Manager for my mothers CHC assessment checklist.
I requested she do it about a month ago and have had to chase. I am nervous she doesn't think it is worth it, but will see this afternoon, and in the meantime was going to share my forthcoming journey to see if it helps anyone in future, or anyone has any pertinent advice.

My mum has Alzheimer's, evident from 2019. Formally diagnosed rapid onset in July 2020, by which time I decided to place her into a care home - having tried to get carers in, she often sobbed, went wandering when they were not there, tried to escape when they were, hugely overdosed on her thyroid medication, and eventually got violent and police involved etc. I have dual LPA on my own - no other close family / friends of hers, so do it alone (with the support of you lovely forum people).
Fast forward her progressive decline...
The duty nurses have agreed with me that when she is undergoing another rapid decline the tell tale is she gets very aggressive - they test her for a UTI (with difficulty), which has been positive before, but they believe this is just as a result of refusing personal care, and it is an increase in her trazadone that eventually helps.
In these episodes it can take four carers just to have basic hygiene care. She will bite, slap and punch. Last month, in the middle of the night, she punched another resident in their sleep, pulled the hair of another (I still feel awful about this). She will refuse food, drink, medicine, or anyone getting near her. Eventually, after agreement with the GP to up her trazadone and some specialist care and encouragement by a couple of the staff (often putting her drink next to her and walking away / watching at a distance), some covert meds begins to bring her round. Usually this has involved the Care Home Support Services (CHSS) mental health team coming in to support the staff in her care plan and psycho-social interventions.
Consistently - she is doubly incontinent. She doesn't know where she is and gets upset easily by questioning as she doesn't understand and gives incoherent answers. As her only visitor, she does not recognise me as her daughter. She has lost ~10kg in 3 months due to sparodic eating / drinking and needs prompting. Her meds are covert and have been for a while. She cannot form full / coherent sentences, often talking to me about the "sick girls who come up from the mill" and how busy she is working to care for them and how she worries for someone who needs to get away but can't. There are other random trains of thought that come out, I piece some like these together after 30-45 minutes with her mumbling, I say very little, just agree with her and reassure her, "I'll get that sorted, you know I always do" to which she smiles.
If I offer her a drink, she struggles to make a choice e.g. water or cranberry juice? But if I say "I'm getting some juice, did you want some?" She will usually say yes. She used to spend her days wandering the corridors of her floor at the home, pacing, could not sit still. She wanders less now, her ankles and feet swollen as she often just sits in a chair mumbling to herself rather than go to bed, she will shuffle about, usually slowly and using the handrails in the corridors. TV, reading, jigsaws, games etc are all not possible.
She's had two falls in the past few months, one was more of a fall off her chair / found on the floor. She used to help the lifestyle team with activities, now she doesn't interact with anyone and usually won't leave her floor (unless tempted down by the icecream van)- she's shouted before about people being on her property when shuffling about.
I've visited before and she's been shivering in her chair saying she is cold, when she has a blanket next to her, so I've immediately wrapped her up. I've also found her trying to reach her shoes and fiddle a few times, I can usually determine this is pain, as she's had problems with her feet and toes historically. She has a pain patch (if she doesn't manage to rip it off!)
Her medicine has a sedative effect, so has periods of being very passive, very quiet and obedient. Even letting the inhouse hairdresser given her a wash and dry at times.
Her DoLs was only done in February this year (part-pandemic backlog, part falling between some gaps) and it is pretty damning saying she needs 24-hour care, cannot make decisions, has no concept of time, place or people.

I am hoping given her behaviour and unpredictability, combined with other needs, will be enough.
She has always been self-funding, but potentially won't last until the end. She worked so hard all her life, always full time, worked towards three degrees and a Masters whilst working. I know if she was able to, she'd be asking me to fight for recognition that her care is above that which social services could provide, and is primary health care needs now.


So, wish me luck I guess!

LostLiz x
 

Dave63

Registered User
Apr 13, 2022
354
0
I'm sure it'll be fine. The thing to remember with the checklist is that it's not meant to be used as an indepth assessment of a persons needs, that's the job of a full MDT assessment. It's basically a screening tool to determine if there is a possibility a person may be entitled to chc funding. The bar is set reasonably low for the checklist to avoid screening out the grey area situations.

Do you have a blank copy of the checklist you can go through beforehand. It'll be handy in case there's any disagreement about scoring. Also, remember that you're advocating for your mum so don't be afraid to disagree if you feel she's getting marked down in a particular area.
 

LostLiz

Registered User
Sep 3, 2020
19
0
Not bad, Care Home Manager had 6 Bs and 1 A.
I pointed out one of the B's should be an A given her unpredictable physical aggression; the manager had forgotten about a few "events" and once I reminded her she agreed - so that makes one of the A's a *
Care Home Manager has said she is continually dealing with CHC assessments, so hopefully her experience will help.

Appreciate this is the equivalent of the atmospheric change before the almighty storm potentially rips your life apart - but I'm strapped in and ready to go.
 

Dave63

Registered User
Apr 13, 2022
354
0
but I'm strapped in and ready to go.

Keep your arms and legs tucked in and scream if you want to go faster :)

6 B's and an A is an automatic MDT. However, don't be surprised if they start ducking and diving and moving goal posts. Get familiar with the National Framework and what the actual process should be, as opposed to what they try and pass off as their policy.

On the other hand it may go swimmingly, you just never know.
 

Chizz

Registered User
Jan 10, 2023
3,148
0
Kent
Hi @Palerider - Thank you so much for your post and attachment in such detail.
Yes one really has to stick with it with dogged determination in such hostile territory!
Taking legal advice would be prudent, but you have to try and select a solicitors' firm that
has appropriate and preferably recent experience in this complicated field.
Well done!
 

Palerider

Registered User
Aug 9, 2015
4,150
0
56
North West
This is my mum’s journey with the CHC. It has been an eye-opening experience as an NHS professional myself and I don’t hold back in saying it is very much an ICB lottery, some ICBs awarding funding having fairly assessed eligibility and other ICBs downplaying eligibility when it comes to either the DST or the totality of needs assessment part of the process and/or both. There is now lots of advice on TP which wasn’t available before. No one person is the same as the next so different issues will crop up, what is important is to ask questions on the forum -some one may know the answer and we now have the CHC appeals support thread as well which is a much-needed addition.

Below is the timeline of my mums CHC period of history to date to give you an idea of how this can potentially pan out:

  • An NHS Continuing Healthcare Checklist was competed on 17 February 2020 the outcome of which was “Referral for full assessment for NHS Continuing Healthcare is necessary”.
  • A full assessment was arranged for 13 March 2020, but this was postponed due to an outbreak of diarrhoea and vomiting in the care home, and then COVID 19 restrictions came into place.
  • considered to be approaching the end of her life on 1 June 2020 and NHS Continuing Healthcare funding was agreed.
  • a Decision Support Tool (DST) was completed at a Multi-Disciplinary Meeting (MDT) on 30 March 2021 -was deemed not eligible for NHS Continuing Healthcare (CHC)
  • 20 April 2021 this decision was appealed.
  • An NHS Needs Portrayal Document was completed on 3 November 2021 (updated on 12 November 2021).
  • A Local Review Panel/Multi-Disciplinary Team Meeting (LRM) was held on 16 November 2022, found not to have a primary need for healthcare and was therefore not found to be eligible for NHS Continuing Healthcare at the time.
  • On 23 January 2023 wrote to NHS England requesting an Independent Review.
  • An Independent Review Panel (IRP) was convened on 3 May 2023 to review the decision made at the MDT on 30 March 2021, using the DST of the same date.
  • 3 May 2023 The IRP concluded that she did have a primary health need. It therefore recommends that she was eligible for NHS Continuing Healthcare.
  • 18 July 2023 -acceptance letter of the IRP’s review from National Health Service Executive (NHSE) and acknowledgement that the original ICB decision made on 30 March 2021 was unsound.
  • 20 September 2023 -enter dispute with the ICB over reimbursement and whether CHC funding should continue.
  • 02 October 2023 -dispute resolved -ICB agreed reimbursement of care fees and CHC funding to continue
It is important to recognise if using a company or legal firm whether it would be beneficial in navigating the assessment process and advocacy required as opposed to tackling this on your own and be aware there are big variances in their fees and their capabilities in handling what can be become complex and with little in the way of redress should disputes continue. What is important from the outset whether you go it alone or use a legal / advocacy firm is to not be afraid of challenging not just the decisions but also how those decisions were arrived at and if needs be writing to the NHS executive if after a positive outcome from the IRP stage you are still being met with obstruction.

The CHC guidance is long winded and does not prepare people for facing CHC assessors who have been trained in its application with bias as they are trained by the CHC. Often many people make their own initial assessment based on the guidance using the DST -it is important to do this objectively and not overestimate where a person with dementia stands, equally it is important not to underestimate as well, a third pair of eyes is always useful when completing the DST part, preferably a professional carer who knows the person or someone that will see things from a different angle and not share your own biases -this is important because getting any argument wrong at the DST stage will then affect how you argue the second stage -the totality of needs and whether on balance they present a primary health need. Rather than me take you through this I have posted my mums IRP document, so you can see how the DST in dispute was considered appropriately by the IRP and then the totality of needs and how the DST feeds into reconciling the totality of needs. The document is fully anonymised. It is worth pointing out that there were several contentions raised and this is because of poor documentation, poor assessment, missing information, and essentially poor record keeping in the care home as well as the original ICB conveniently accepting missing facts and essentially using mistakes to not address issues and take them into consideration (if this is your experience you need to raise this as well as frequently changing agency staff). Relatives/friends and families accounts do get taken into consideration at the IRP stage, I can’t say that is true at the initial ICB stages as this entry on TP bears testimony to. I have never received a full copy of the DST and ICB assessment and reasons for their decision to this day. Finally one of the overriding points the original ICB tried to consistently argue was that my mum was not eligible because her needs were being met in an EMI unit - it is difficult to grasp this but the place of care has no relevance on whether there is a primary health need, you will see that this is addressed by the IRP if you read through properly and be patient. You won’t get the gist of things by skimming it quickly.

Finally, be strong and never give up. I am happy to answer any questions that I think I can reasonably answer that may be of help to you. The IRP summary is attached to this post.
 

Attachments

  • IRP Report 030423 redacted 05 Oct.pdf
    378.8 KB · Views: 138

luggy

Registered User
Jan 25, 2023
178
0
Hi Everyone. I'm looking for advice on having to top up care home fees when CHC funding is in place. My understanding has always been that if a resident is found to be eligible for CHC, then fees are paid in full by the ICB, but it seems my understanding may be misplaced. My mum's situation is as follows:-

Mum became eligible for NHS Fast Track funding at the end of August. She's due for a review at the end of this month.

Two weeks ago, mum's care home announced that it is closing down. As she is in receipt of Fast Track funding, the ICB stated that mum must go to a nursing home and that they would make the necessary arrangements.

There is a dire shortage of nursing homes in my area. We had a choice of four. Two of them wouldn't accept mum, the remaining two are expensive.

One of the expensive homes accepted mum. The fees will be paid in full whilst mum is on the Fast Track pathway.

I'm currently in the middle of a CHC appeal regarding an MDT which found mum ineligible for CHC in January.

Based on my rather optimistic assumption that at some point mum's funding may change from Fast Track to normal CHC, it would appear that the nursing home in which mum has been placed by the ICB will be requesting top up payments. Here is a quote from their brochure - "the NHS will only pay towards your assessed care needs; it will not ordinarily fund a resident's choice to live in an attractive, comfortable and well-resourced home, such as those run by ******** The difference between what the care home of your choice charges and the amount the ICB will pay.........remains payable by you as it is regarded as a non-refundable lifestyle choice to live in such a home."

Of course, we didn't have a choice, given that the less expensive care homes wouldn't accept mum.

Has anyone come across this situation before?

Any advice or experiences would be much appreciated.

Thank you.