Continuing health care removed after being fast tracked 6 months previously

[Jacky Bels]

My mother has vascular dementia & been in care home for 4 years.
Following a fall broke her hip & spent 3 weeks in hospital with partial repair. Consultant told me unlikely any mobility would return & she would be needing nursing care in future.
Subsequently a community nurse referred Mum to be fast tracked for CHC & her GP sent EOL bag ready in case.
Mum by now was bed bound after I witnessed 3 carers attempting to transfer for hoisting for toileting & failed & decided from then on she would be padded & completely bed bound.
So doubly incontinent & no short term memory & unable to feed herself.
Initially slept a lot & lost so much weight she is now skeletal.
She was taking sertroline & opiate patch & paracetamol.
Needing 2 hourly checks
As I visit most days have at times assisted with her feeding & have witnessed hallucinations & attacks of severe agitation & undressing herself.
I have seen & heard her screaming when being moved for washing or pad changing as she doesn’t like to be touched & is always feeling cold.
Her decline is very obvious since she was fast tracked.
Six months later I received a phone call in busy surroundings to say something about an assessment which I didn’t really understand as obviously I had not known or been present for my mother’s initial assessment.
The person mentioned a date in case I wanted to be present which was the date I had an urgent dental appointment- I was told it didn’t matter as I didn’t need to be there so unfortunately didn’t attend & really wished I had !
Then I received the documents that informed me Mums CHC would be removed as not deemed eligible even though she was much worse than when first awarded.
Care home very surprised too & said never heard of someone being declined when they were obviously needing more care than initially.
On examining the assessment form I disputed several things.
After reading Mums care plan from the home can see that some things go unrecorded that I have witnessed & some younger carers have also not passed on.
I am now at the point of an appeal face to face 2 hour meeting on Microsoft Teams & realise I have to base my evidence on how Mums needs are managed & not diagnosis etc
It has taken 5 months from the start of the appeal to reach this stage & Mum much worse now & taking lorazepam for her increasing psychotic episodes.
Feel exhausted by it all !

 

[Grannie G]

Welcome @Jacky Bels

I have heard of CHC being withdrawn but have no knowledge of the circumstances.

There might be something on this link to help you.

Your CHC Appeals support thread

Welcome to Dementia Support Forum’s new support thread for NHS Continuing Health Care. We are the Continuing Healthcare appeals team at Alzheimer’s Society. We are a team of 2 service coordinators supported by a group of highly knowledgeable and experienced volunteers who come with both a...

forum.alzheimers.org.uk

 

[Rayreadynow]

You can appeal and I would, but they have a large backlog of assessments and appeals according to the internet.

 

[canary]

Mum by now was bed bound after I witnessed 3 carers attempting to transfer for hoisting for toileting & failed & decided from then on she would be padded & completely bed bound.
So doubly incontinent & no short term memory & unable to feed herself.
Initially slept a lot & lost so much weight she is now skeletal.
She was taking sertroline & opiate patch & paracetamol.
Needing 2 hourly checks
As I visit most days have at times assisted with her feeding & have witnessed hallucinations & attacks of severe agitation & undressing herself.
I have seen & heard her screaming when being moved for washing or pad changing as she doesn’t like to be touched & is always feeling cold.

Hello @Jacky Bels
Im so sorry to hear about your mum - her dementia sounds very advanced now

CHC is awards on health needs and, unfortunately, all of these things that you have mentioned are classified as social needs, rather than health needs. Her dementia has certainly progressed, but dementia by itself does not qualify for CHC. It sounds like she was awarded CHC as she was considered to be End of Life and would not survive beyond 6 months, but she has and now the people who have assessed her do not consider that she is at End of Life.

I am not certain what steps you can take now because my mum was never considered eligible for CHC, but I know that there are members who are more knowledgeable.

 

[Dave63]

I was told it didn’t matter as I didn’t need to be there so unfortunately didn’t attend & really wished I had

The Fast Track Pathway guidance states in para 24:

In the spirit of the person-centred approach, practitioners should make all reasonable efforts to seek the participation of the individual (or their representative) for the assessment and review process for NHS Continuing Healthcare, during each stage of the process. For a comprehensive assessment, the best evidence available at the relevant time should be considered. This should involve consideration of the individual's (or their representative's) view, and they should be empowered and assisted to participate. Throughout the process, this person-centred approach should be embedded in all decisions which relate to the individual's needs assessment, and their care planning.

Then I received the documents that informed me Mums CHC would be removed as not deemed eligible even though she was much worse than when first awarded.

So I'm assuming (it's not clear in your post) that your mums Fast Track was reviewed after 3 months. Her needs were assessed as having changed and a full MDT assessment was called which has found her to be ineligible? Is the documentation you received copies of the Decision Support Tool? If so, it should state who was in attendance. Were any of those attending people who are involved with your mums day to day care, nursing home staff, mental health practioners etc?

realise I have to base my evidence on how Mums needs are managed & not diagnosis etc

That's correct. The important thing to remember when talking about needs is that a managed need is still a need and should only be assessed with a view to how any reduction or removal of that management would impact your mums needs. For example, just because your mum is taking medication X which alleviates a certain symptom it can't be said that she no longer has a need. It can only be scored with a view to what would happen if medication X was reduced or stopped entirely.

 

[Dave63]

CHC is awards on health needs and, unfortunately, all of these things that you have mentioned are classified as social needs, rather than health needs. Her dementia has certainly progressed, but dementia by itself does not qualify for CHC. It sounds like she was awarded CHC as she was considered to be End of Life and would not survive beyond 6 months, but she has and now the people who have assessed her do not consider that she is at End of Life.

This not correct I'm afraid @canary. Whilst dementia in its self would make it difficult to get CHC funding @Jacky Bels mum has additional things impacting her health needs. Dementia is the diagnosis, what's important is how the illness impacts a persons primary health needs across the 12 domains.

It's also become a bit of a myth that Fast Track is only available to those with a life expectancy of six months or less. There are no time limits set with in the Fast Track guidance and a person does not even need to have a terminal illness.

 

[canary]

@Dave63
Jacky said that her mum was fast tracked for CHC, so I assumed that this meant that she was considered to be at end of life and this was the reason why she got it. But I bow to your superior knowledge. As I said, my mum was never eligible for CHC (even though she had most of the things that Jacky listed), so I dont know that much about it

 

[Jacky Bels]

Answering the question about who was in attendance for the Assessment it was an unknown to myself CHC Nurse Assessor RGN & the Assistant Manager of the Care Home who spends most of her time doing admin in the office & would not know my mother in a caring capacity.
This is why I feel strongly that I should have been made aware of the importance of the meeting & had it properly explained
An email or letter would have been helpful

 

[Dave63]

A CHC nurse assessor and an assistant home manager does not appear to be an adequate MDT panel and is also not aligned with the guidance for who should attend an MDT as set out in the National Framework. I'm not sure if it's possible but if it were me I would be asking that a new MDT be arranged as the original would have disadvantaged your mum by not having someone who has been trained in the National Framework and is not directly involved with your mums care needs. At an absolute minimum the homes nurse should have been on the panel.

Following may be of help in understanding how MDT's should be conducted:

The MDT assessment - Here's what you need to know beforehand

An MDT assessment will follow a successful outcome of a Checklist assessment. They allow the Multi-Disciplinary Team to consider CHC eligibility.

caretobedifferent.co.uk

Multi-Disciplinary team assessment - Here's what you need to know

In order to establish whether your relative meets the criteria for NHS funding, they’ll need a Multi-Disciplinary team assessment

www.farleydwek.com

 

[Jacky Bels]

Thank you for that information- the face to face stage 2 of the appeal via Microsoft team meeting takes place in a couple of weeks.
Will use that information & add to my list.

 

[Dave63]

Thank you for that information- the face to face stage 2 of the appeal via Microsoft team meeting takes place in a couple of weeks.
Will use that information & add to my list.

Just as a heads up, the appeal will focus on how the original MDT was conducted and the rationale it used to determine the scoring of each domain. The whole focus of the appeal will be on determining if there is a Primary Health Need, any disputes about incorrect process will be dealt with seperately via their complaints procedure as failures in process have no bearing on whether or not there is a primary health need.

Use the copy of the DST you were sent which should detail the evidence provided for each domain and how they determined the scores. Make notes about each domain if you feel any evidence had not been considered or if the severity of any domain had been downplayed in any way. Most importantly, make sure the care home records were accurately reflecting your mums true needs and emphasise the point that you don't believe that an admin manager was knowledgable enough to present a clinical insight of your mums needs.

Good luck with the appeal.

‘Primary health need’ made simple – what does it really mean? - Care to be Different

If you're going through the NHS Continuing Healthcare assessment process you've no doubt heard the expression ‘primary health need’. But what does it really mean...

caretobedifferent.co.uk

How to write an appeal for NHS Continuing Healthcare - Care to be Different

What to include in an NHS Continuing Healthcare appeal - follow these step-by-step tips to help you write an appeal for NHS Continuing Healthcare...

caretobedifferent.co.uk

 

[Jacky Bels]

Thank you for advice about possible incorrect procedure.
I have already singled out 2 of the primary needs & in my opinion they should have been assessed from “no need” to “moderate” another from “low” to “high”
I am supplying with evidence from care plan but also can see that quite a few things have gone unrecorded.
I have sometimes seeked the help of an available carer when Mum needs assistance due to agitations & bed clothes removed etc & the younger carers maybe have forgotten or can’t be bothered to record ??
The records do not show everything correctly although I have complete support of the manager.

 

[Jacky Bels]

I have taken photographs & videoed Mum often on my visits & dates which I send to my brother as he has moved a long distance away.
Am I able somehow to use at the face to face appeal ?

 

[Dave63]

I have taken photographs & videoed Mum often on my visits & dates which I send to my brother as he has moved a long distance away.
Am I able somehow to use at the face to face appeal ?

Unfortunately, I think they'll only consider evidence for the time period of the original MDT which is usually the three months prior to the assessment, although it can sometimes be as little as four weeks, every ICB is different.

 

[Rayreadynow]

You must make sure its reflective of the worst days.

 

[Jacky Bels]

Photos of my mother were taken before the assessment & videos & am aware that they are only interested in that time scale just not sure if I can practically show when doing face to face meeting on an iPad?

 

[Dave63]

Photos of my mother were taken before the assessment & videos & am aware that they are only interested in that time scale just not sure if I can practically show when doing face to face meeting on an iPad?

Not sure it'll be of any use to be honest as they'll probably be more focused on GP/hospital reports, care home records, care plans etc. You could always mention it during the meeting and they'll be able to tell you.

@Rayreadynow makes a good point about making sure they make any decisions based on the how needs are presenting throughout the day. For example, my mum tends to be not so bad during the morning but things really ramp up during the afternoon and especially during the night.

 

[Jacky Bels]

That’s exactly the same with my Mum
the pattern of mid to late afternoon
I have read it’s called “sun downing” & I very common especially in advanced dementia 😔

 

[Palerider]

My mother has vascular dementia & been in care home for 4 years.
Following a fall broke her hip & spent 3 weeks in hospital with partial repair. Consultant told me unlikely any mobility would return & she would be needing nursing care in future.
Subsequently a community nurse referred Mum to be fast tracked for CHC & her GP sent EOL bag ready in case.
Mum by now was bed bound after I witnessed 3 carers attempting to transfer for hoisting for toileting & failed & decided from then on she would be padded & completely bed bound.
So doubly incontinent & no short term memory & unable to feed herself.
Initially slept a lot & lost so much weight she is now skeletal.
She was taking sertroline & opiate patch & paracetamol.
Needing 2 hourly checks
As I visit most days have at times assisted with her feeding & have witnessed hallucinations & attacks of severe agitation & undressing herself.
I have seen & heard her screaming when being moved for washing or pad changing as she doesn’t like to be touched & is always feeling cold.
Her decline is very obvious since she was fast tracked.
Six months later I received a phone call in busy surroundings to say something about an assessment which I didn’t really understand as obviously I had not known or been present for my mother’s initial assessment.
The person mentioned a date in case I wanted to be present which was the date I had an urgent dental appointment- I was told it didn’t matter as I didn’t need to be there so unfortunately didn’t attend & really wished I had !
Then I received the documents that informed me Mums CHC would be removed as not deemed eligible even though she was much worse than when first awarded.
Care home very surprised too & said never heard of someone being declined when they were obviously needing more care than initially.
On examining the assessment form I disputed several things.
After reading Mums care plan from the home can see that some things go unrecorded that I have witnessed & some younger carers have also not passed on.
I am now at the point of an appeal face to face 2 hour meeting on Microsoft Teams & realise I have to base my evidence on how Mums needs are managed & not diagnosis etc
It has taken 5 months from the start of the appeal to reach this stage & Mum much worse now & taking lorazepam for her increasing psychotic episodes.
Feel exhausted by it all !

Hi @Jacky Bels

Interestingly my mum went through the same thing. She had been granted CHC funding and was on it for nearly a year until March / April when in a very similar and underhanded way they did a similar thing only to find mums CHC funding was stopped. They (the CHC) really are treading a fine line in the way they do things because you can't say you weren't notified, however the quality of that notification has a lot to be desired and tends to favour the CHC from the outset.

At that stage I was just tired of having to fight for pretty much everything so I utilised a firm that specialises in this and advised me that t is not uncommon to start trying to remove people from CHC funding as the end of the year approaches and budgets become strained -I have to say I don't believe that budgets are strained as the CHC funding budget has been under utilised for nearly a decade and therefore juxtaposed as 'savings' rather than money that should have been used.

Stand your ground with this, because they will try to argue things assuming you have no knowledge of what and how they are assessing needs and also they tend to misrepresent the national guidance on assessment and decision making. Finally even if they argue needs are well managed, a well managed need is still a need also CHC funding can be granted regardless of place of dwelling because it is assessed purely on need and how those needs impact on each other. It is stressful but don't be perturbed by it -good luck. View my mums appeal response from the CHC that I posted to help others, here's the page link scroll down to post #1,079:

CHC (Continuing Healthcare) support thread

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...

forum.alzheimers.org.uk