Your CHC Appeals support thread

[AS CHC Team]

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 personal and professional understanding of Continuing Healthcare (CHC).

This new thread aims to provide carers, advocates, and people living with dementia with the tools to pursue an appeal should you wish to do so. You may seek practical and emotional support, and share your own experiences of best practices.

If you have any questions or would like more information, please comment below.

Best wishes,
Esther, Georgia, Tim and Tony

Please note:

• The team are happy to share their experiences and knowledge, but cannot provide legal advice.
• Appealing a CHC rejection is a personal decision that we cannot make for you, but we can support you to navigate the process.

We aim to respond to comments and questions within 5 working days.

 

[AS CHC Team]

These tips are based on the experience of our NHS Continuing Healthcare Volunteer Group members who have been successful in getting NHS continuing healthcare for people with dementia
(Listed below or see attached)

​

1. Create a medical history

Create a medical history for the person you care for. Ideally this should be on one page, and should be regularly updated. This information may be useful when organising care and support, but could also be helpful if you need to appeal an eligibility decision at a later date.

2. Good record keeping is essential

Record the date, time, contact details and a brief summary of all conversations with staff about the needs of the person you care for. This includes professionals from the Integrated Care Board (ICB), hospital, GP practice, care agency, care home or social services. This is important because the records kept by the various bodies involved in a person's care can sometimes be inaccurate or inadequate. A high level of staff turnover can also lead to lack of continuity in record keeping.

3. Request medical records

Request medical records from various bodies involved in the care of the person, for example the hospital or GP.

4. File all the information you gather

You might find it useful to get a folder and file information under different headings, such as care home notes, nursing home notes, NHS continuing healthcare assessments, care plans, letters and your comments.

5. Create a paper trail

When applying for Continuing Healthcare or challenging a decision, it is often best to put your case in writing and request written responses. This creates a paper trail.

6. Read the National Framework

Use the National Framework for continuing healthcare to inform yourself about each of the 12 care domains, consider which weighting may apply to the person.

7. Try to attend all assessments or appeal/ review hearings

For example, by the Integrated Care Board (ICB) or independent review panel. Take notes of what is said and who has said it.


8. Gather evidence

Evidence from professionals such as the person’s GP may provide some support, but remember that the case has to be argued based on health care needs and not the person’s diagnosis.

9. Be aware that the appeals process follows three stages

• Local Resolution with the ICB
• NHS England for an Independent Review
• The Parliamentary and Health Service Ombudsman is the final arbiter. Unlike the previous appeal stages, their role is to check the correct process has been followed to assess eligibility, rather than to question the decision itself.

10. Ensure you are as informed as possible about the eligibility criteria and the process

If based on this you think you have a strong case, be persistent. It can be difficult and frustrating but many people with dementia have successfully secured NHS continuing healthcare funding.

 

[Ruth32]

Hi, I think this support thread is just what I have been looking for so Thank you.

A quick question if possible. My mum had her 3 month assessment 2 weeks ago and I have just received a phone call to say that the nurse who did the assessment has decided mums needs had changed. (it was online and she didn't see mum, she was meant to but didn't arrive because she got confused and thought the appt was online). I had travelled from Dorset to Warwickshire for the appointment with her and she didn't turn up.

Anyway, they now want to do a full assessment next Monday but when I asked for what they think has changed, I got a vague answer and the reply that hopefully someone will contact me about that. So the questions is Do they have to tell me the details ? Obviously I want as many details as possible before this meeting, so can I demand the details beforehand? Also I asked as this was another full assessment, was it being attended by a MST, i.e. would Social Services be there. They said they would invite them but they didn't have to be there. I actually thought for a full assessment it needed to be a MST and not just one person. Am I wrong on this ?

Many thanks in advance.
Ruth

 

[try again]

May just be starting down this route
Mum has just been issued a section 2 discharge and I am informed the discharge team will be in touch in the next day or so.
I read that I could request a look at the notice but I am told I need to apply for permission and don't have access automatically. So strike one

I have spoke to the ward manager and mentioned team around the person meeting and she had not heard of the term and said it was in the hands of social services. So strike two.

It's going to be interesting!

 

[nitram]

mentioned team around the person meeting and she had not heard of the term

'in person meeting' usually means a face to face meeting of all parties.

 

[Dave63]

Hi, I think this support thread is just what I have been looking for so Thank you.

A quick question if possible. My mum had her 3 month assessment 2 weeks ago and I have just received a phone call to say that the nurse who did the assessment has decided mums needs had changed. (it was online and she didn't see mum, she was meant to but didn't arrive because she got confused and thought the appt was online). I had travelled from Dorset to Warwickshire for the appointment with her and she didn't turn up.

Anyway, they now want to do a full assessment next Monday but when I asked for what they think has changed, I got a vague answer and the reply that hopefully someone will contact me about that. So the questions is Do they have to tell me the details ? Obviously I want as many details as possible before this meeting, so can I demand the details beforehand? Also I asked as this was another full assessment, was it being attended by a MST, i.e. would Social Services be there. They said they would invite them but they didn't have to be there. I actually thought for a full assessment it needed to be a MST and not just one person. Am I wrong on this ?

Many thanks in advance.
Ruth

Hi Ruth,
I'm not one of the forum team but thought the following from the National Framework (2022) document may help:

Sec 203 - These reviews should primarily focus on whether the care plan or
arrangements remain appropriate to meet the individual’s needs. It is expected
that in the majority of cases there will be no need to reassess for eligibility.

Sec 204 - It is expected that the most recently completed Decision Support Tool (DST)
will normally be available at the review and should be used as a point of reference
to identify any potential change in needs. Where there is clear evidence of a
change in needs to such an extent that it may impact on the individual’s eligibility
for NHS Continuing Healthcare, then the ICB should arrange a full reassessment
of eligibility for NHS Continuing Healthcare.

Sec 205 - Where reassessment of eligibility for NHS Continuing Healthcare is required, a
new DST must be completed by a properly constituted multidisciplinary team
(MDT), as set out in this National Framework. Where appropriate, comparison
should be made to the information provided in the previous DST. ICBs are
reminded that they must (in so far as is reasonably practicable) consult with the
local authority before making an NHS Continuing Healthcare eligibility decision,
including any re-assessment of eligibility. This duty is normally discharged by the
involvement of the local authority in the MDT process, as set out in the
Assessment of Eligibility section of this National Framework. ICBs should ensure
an individual’s needs continue to be met during this reassessment of eligibility
process.

If you don't have a copy it's definitely worth a download.

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1087562/National-Framework-for-NHS-Continuing-Healthcare-and-NHS-funded-Nursing-Care-July-2022-revised.pdf

Dave

 

[Ruth32]

@Dave63 Thank you so much for your reply. I spent the morning reading the national Framework, but the sections you have pointed out, are the much needed ones and I am going to print those out.

Although I was told yesterday, someone from the clinical team of CHC would contact me and explain why they think mums needs have changed, nobody has and I still haven't received any letters informing me of this, just a phone call saying they want to do another full assessment.

I chased them this afternoon and got told they will need to delay the assessment now as I have asked for a face to face one, but, 2 hours later I had a phone call from social services wanting to chat to me before the meeting at 10am on Monday ! Which I had to reply what meeting ? We are all very confused.

Anyway what I am surmising but no one has mentioned this - is that because they can't now use a hoist on mum because she becomes too aggressive to manage and it also causes her to much distress, they now need 2 people to try and move her into a wheelchair from the bed. How this is an improvement I don't understand but the SS lady seems to think it is. And also because now mum is trying to move, but can't, she just falls, that is also an improvement. I suppose her behaviour has improved as she can't move about to hit other residents. She is extremely vocal now though and upsets the other residents in that way.

Unfortunately I have just found out that the care home hasn't recorded all the incidents of challenging behaviour - their own admission. So after a sleepless night last night, I will wait to see what tomorrow brings.

Many thanks again.

 

[Brizzle]

Hi Ruth,

I always smell a rat when people seem to want to rush things through without following correct due process. My mum had her 3 month review in early December although in reality it was a 6 month review as it was 3 months late.

There was only myself , the assessor and a senior nurse from the home present. It was an “in person meeting” and the assessor got some time to see mum. To be honest I was expecting a difficult time since the original CHC decision was noted as being” marginal” which I felt might have been put in place to set us up for a fall at the 3 month review.

The senior nurse at the home confirmed that very little had changed since the full assessment and mum was confirmed as being eligible for CHC for another year by the assessor. Within 3 days I was sent a confirmation letter and a current written report over each of the domains , which detailed the original DST levels and comments and mums current needs and any recommendations to the nursing staff. I did notice however that the assessor marked mums behaviour back down to high from severe despite saying nothing had changed . There was even a contradiction saying that at the full assessment only the social worker gave a severe level , there was no mention of the dementia well being professional and unbelievably the notes also said the nursing home did not offer their opinion when presumably asked. It will not have gone unnoticed by the CCG that after the social workers severe marking for the behavior domain I was cut off of the teams meeting so as regards my presence and my tape recording cannot prove this is a deliberate lie or just incorrect. On rejoining the meeting I was told however that the general consensus of the panel was that mums behaviour level was severe and that is on tape. Best bit of all though is I have in writing on the original DST that other than the CHC assessor “ all other MDT panel members gave a severe level of need “. So alls well that ends well, I might not have it on tape but I’ve got it from the horses mouth in writing should I need that piece of evidence in the future.

Sorry if I have rambled on a bit about my mum’s 3 month review but it was only to show that you should be entitled to something in writing before being thrown into a rushed meeting. Study what you get and compare it the DST paperwork you got when your mum was successful at the full assessment as opposed to what they are saying at the 3 month stage.You might find a few things that compromise the soundness of the 3 month review, after all my mum got through the review but there were some glaring mistakes when summing up which makes me feel this might be the start of a process to get mum off of CHC in the not too distance future.

Regards rushing people, on mums first full assessment when she was still in hospital they gave me only a few days notice of an impending full assessment. I knew nothing of the CHC process back then and they knew it. Myself and mum had basically been setup to fail and they also knew that. I managed to get couple of weeks delay in order to accumulate evidence but it was nowhere near enough but at least it gave me some time to get a little familiar with the main points of the NF. On the day of the assessment none of the hospital nurses that had experience with mum were present , it was just myself , the assessor and a social worker that had never met mum. It didn’t smell right and indeed I later found per the NF it wasn’t right. I was even able to find out by a bit of stealth internet searching that the CCG assessor had only been in the job for a month.

After the rushed meeting I was told by the CCG that mum did not qualify for CHC which I was expecting and in reply they were told that I intended to declare the assessment null & void due to mispractice as per the National Framework which they were not expecting ! They did not try and defend their case and mum was subsequently given a 2nd full assessment that had to be abandoned for other reasons before finally getting CHC 3rd time lucky.

Whatever you do Ruth don’t be bullied, demand the paperwork, study it with a toothpick, tell them politely what you consider to be a reasonable time to prepare following receipt of that written confirmation. Learn as much about the NF as you possibly can and call them out at all times should you feel they might be in breach of it.

Wishing you the very best of luck !

 

[Ruth32]

@Brizzle. Thanks so much for your input and advice. As my husband and daughters say, I am a stubborn mule at times so won't give up. I am also a Libran, so anything that seems unjust or unfair, just tips my scales and I won't rest until I get them balanced again !

I really don't know how much longer mum has left anyway as she is now coughing up brown phlegm and the last thing I need is to worry about the CHC ! But I have had some clarification today from CHC via a phone call - still no paperwork.

Apparently it is the following points:-
Mobility - can weight bear
Behaviour - only has challenging behaviour during personal care.
Phycological & Emotional. Comfortable at night time. During daytime, Always calm & happy, enjoys chatting to other residents & listening to music.

After speaking the care home manager today, she has confirmed that mum can move from bed to chair with the help of 2 carers but she cannot walk.
Re the challenging behaviour, she said it is not noted down all the time because it is constant. She is going to address this with the staff.
Re the other stuff, her words were this is simply Not True ! Mum is never calm & happy, always distressed and she cannot hold a conversation, the only words she says is Help Me - it is so sad.

Anyway she wants to attend the meeting too, so hopefully that might be a positive thing. Unfortunately, I think if the CHC get the wrong person on the end of the phone at the end care home, the carers just want to say all is fine & good (they do this with me). Just today, they told me that mum enjoys partial participation in activities, the manager seemed to disagree.

I have also managed to postpone the appointment for another week. Although the CHC got very grumpy about that. I couldn't do the first date she gave me and got quite shirty with me and said that I had one date left otherwise.... ? Anyway, I could do that date, so I will continue waiting for paperwork and emails to arrive from them. As of yet again nothing written down, although this morning, the CHC did promise me an email today.

Many thanks again !

 

[luggy]

Welcome to Dementia Talking Point’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 personal and professional understanding of Continuing Healthcare (CHC).

This new thread aims to provide carers, advocates, and people living with dementia with the tools to pursue an appeal should you wish to do so. You may seek practical and emotional support, and share your own experiences of best practices.

If you have any questions or would like more information, please comment below.

Best wishes,
Esther, Georgia, Tim and Tony

Please note:

• The team are happy to share their experiences and knowledge, but cannot provide legal advice.
• Appealing a CHC rejection is a personal decision that we cannot make for you, but we can support you to navigate the process.

We aim to respond to comments and questions within 5 working days.

Hello. I'm so pleased to have found this thread. My mum had her second DST a couple of weeks ago and was found to be not eligible (again), so I'm preparing myself for an appeal. Having been through 2 DST's and 2 Reviews, I've read everything I can get my hands on with regards to CHC and Alzheimer's. I also have a Beacon caseworker helping me. I have made some progress - the most recent DST scored mum with 1 Severe, 6 Highs, 3 Moderates & 2 No Needs. (The original DST scored 1 Severe, 2 Highs, 4 Moderates, 2 Lows & 3 No Needs.) With CHC, the crux of the matter are the 4 Key Indicators , and this is where we fall down.

To put things in perspective, mum has had Alzheimer's for 18 years. She is now at 'end stage'. Medical interventions have been withdrawn, there is a non-hospitalisation protocol and she is receiving 'comfort care'. No known comorbities. She is completely dependant on carers for every single aspect of her care.

Breathing - No Needs
Nutrition - High. Nutritionally at risk. Very low weight, BMI. Needs to be hand fed. Given nutritional supplements several times a day.
Continence - Moderate. Doubly incontinent.
Skin - Moderate. At risk, but currently no skin breakdown. Creams applied twice a day. Re-positioned every 4 hours.
Mobility - High. Bedridden. Hoist required for weighing purposes only. Contracted lower limbs.
Communication - High. Cannot reliably communicate basic needs.
P.E.N - High. Hallucinates, cries out, screams. Distressed for long periods. Lorazepam prescribed up to 3 times daily.
Cognition - Severe.
Behaviour - High. Aggressive and verbally abusive during personal care interventions.
Drugs - High.
ASC - Moderate. Was previously No Needs, but has recently begun to suffer from Seizures.
Other - No Needs.

I agree with the scores, but would appreciate some advice on the ICB's decision that mum does not have a primary health need. I would have thought that the nature of her condition lends itself to an intensity in the quantity of care required. There is certainly interaction within many of the domains which would suggest some level of complexity. The assessor has stated that mum's behavioural issues do not give rise to unpredictability because the carers/nurses have come to expect it and have normalised it, which brings me to the concept of the 'well managed need is still a need'.

In view of the above, is it worth my while initiating an appeal? Thank you for reading this.

 

[Ruth32]

@luggy

There seems to be no rhyme or reason as to how and when our loved ones receive CHC funding. My mum's situation sounds very similar to yours.

She received a scoring of 1 severe, 5 highs, 3 moderates & 2 no needs, and got awarded the funding at first.

I am not sure whether it is a postcode lottery, but from what I have read is the following

"If you have at least one priority need or two severe needs, you should qualify for continuing care funding.

If you have one severe need and a number of other high or moderate needs, you may also be eligible."

And then we have the well managed needs ! I am certain, if my mum had her care taken away, most of the challenging behaviour, aggression, would appear again in full force. It is still there, but it is well managed because she gets a lot of attention. How to prove this though, I don't know.

Personally, although my mums funding hasn't been taken away as of yet, I am willing to appeal if it is necessary.

I hope others will come along, who have been through the appeal process and will be able to advise you more.

Good Luck

 

[luggy]

@luggy

There seems to be no rhyme or reason as to how and when our loved ones receive CHC funding. My mum's situation sounds very similar to yours.

She received a scoring of 1 severe, 5 highs, 3 moderates & 2 no needs, and got awarded the funding at first.

I am not sure whether it is a postcode lottery, but from what I have read is the following

"If you have at least one priority need or two severe needs, you should qualify for continuing care funding.

If you have one severe need and a number of other high or moderate needs, you may also be eligible."

And then we have the well managed needs ! I am certain, if my mum had her care taken away, most of the challenging behaviour, aggression, would appear again in full force. It is still there, but it is well managed because she gets a lot of attention. How to prove this though, I don't know.

Personally, although my mums funding hasn't been taken away as of yet, I am willing to appeal if it is necessary.

I hope others will come along, who have been through the appeal process and will be able to advise you more.

Good Luck

Thank you for your response Ruth32. Our assessor had already decided mum wasn't going to get it before the DST took place/. That is what our ICB do - they automatically decline in the hope that you won't appeal, and many don't. Mum's care home are not supportive of CHC. The NHS does not pay the care home as much as a self funder does, so the company who own it have a financial interest in not supporting CHC applications. This was evident during mum's DST - the nurse representing mum's care home was very non-committal and at one point stated that I was not being truthful!

 

[Dave63]

Thank you for your response Ruth32. Our assessor had already decided mum wasn't going to get it before the DST took place/. That is what our ICB do - they automatically decline in the hope that you won't appeal, and many don't. Mum's care home are not supportive of CHC. The NHS does not pay the care home as much as a self funder does, so the company who own it have a financial interest in not supporting CHC applications. This was evident during mum's DST - the nurse representing mum's care home was very non-committal and at one point stated that I was not being truthful!

Our mum had to move from her first nursing home due to them not being able to manage her needs. My sister and I visited numerous homes and they we're all extremely welcoming and positive about being able to care for mum. However, most of them became less positive once we mentioned we were going through the CHC process. We eventually found a wonderful home who are very supportive and genuinely care about their residents, irrespective of how they are funded.

We're currently going through the appeal phase for mum. I was initially doing all the research myself and liaising with CCG, social services, GP's, nursing home staff, mental health teams, physio's, etc. But eventually they (CHC) were tying me up in knots and being deliberatley obstructive so we made the decision to instruct specialist solicitors to handle the appeal.

I've developed a rather cynical view that the CHC process is morally bankrupt and is applied in such a way that people want to give up because of how mentally and emotionally exhausting it is. It's managed by a bunch of gatekeepers whose primary purpose appears to be to shout "You shall not pass".

That's more rant than helpful

 

[nitram]

My sister and I visited numerous homes and they we're all extremely welcoming and positive about being able to care for mum. However, most of them became less positive once we mentioned we were going through the CHC process.

Is your mum self funding?

 

[Dave63]

Is your mum self funding?

Hi nitram,
She is self funding. Initially from her savings and now through the proceeds of her bungalow sale.

 

[nitram]

Hi nitram,
She is self funding. Initially from her savings and now through the proceeds of her bungalow sale.

CHC funding will be less than self funding, hence the doubt that they would be able to care for her.

 

[luggy]

Our mum had to move from her first nursing home due to them not being able to manage her needs. My sister and I visited numerous homes and they we're all extremely welcoming and positive about being able to care for mum. However, most of them became less positive once we mentioned we were going through the CHC process. We eventually found a wonderful home who are very supportive and genuinely care about their residents, irrespective of how they are funded.

We're currently going through the appeal phase for mum. I was initially doing all the research myself and liaising with CCG, social services, GP's, nursing home staff, mental health teams, physio's, etc. But eventually they (CHC) were tying me up in knots and being deliberatley obstructive so we made the decision to instruct specialist solicitors to handle the appeal.

I've developed a rather cynical view that the CHC process is morally bankrupt and is applied in such a way that people want to give up because of how mentally and emotionally exhausting it is. It's managed by a bunch of gatekeepers whose primary purpose appears to be to shout "You shall not pass".

That's more rant than helpful

Thanks Dave63. Rants are helpful! It all sounds very much like my experience. I hope you win your appeal.

 

[AS CHC Team]

Hello. I'm so pleased to have found this thread. My mum had her second DST a couple of weeks ago and was found to be not eligible (again), so I'm preparing myself for an appeal. Having been through 2 DST's and 2 Reviews, I've read everything I can get my hands on with regards to CHC and Alzheimer's. I also have a Beacon caseworker helping me. I have made some progress - the most recent DST scored mum with 1 Severe, 6 Highs, 3 Moderates & 2 No Needs. (The original DST scored 1 Severe, 2 Highs, 4 Moderates, 2 Lows & 3 No Needs.) With CHC, the crux of the matter are the 4 Key Indicators , and this is where we fall down.

To put things in perspective, mum has had Alzheimer's for 18 years. She is now at 'end stage'. Medical interventions have been withdrawn, there is a non-hospitalisation protocol and she is receiving 'comfort care'. No known comorbities. She is completely dependant on carers for every single aspect of her care.

Breathing - No Needs
Nutrition - High. Nutritionally at risk. Very low weight, BMI. Needs to be hand fed. Given nutritional supplements several times a day.
Continence - Moderate. Doubly incontinent.
Skin - Moderate. At risk, but currently no skin breakdown. Creams applied twice a day. Re-positioned every 4 hours.
Mobility - High. Bedridden. Hoist required for weighing purposes only. Contracted lower limbs.
Communication - High. Cannot reliably communicate basic needs.
P.E.N - High. Hallucinates, cries out, screams. Distressed for long periods. Lorazepam prescribed up to 3 times daily.
Cognition - Severe.
Behaviour - High. Aggressive and verbally abusive during personal care interventions.
Drugs - High.
ASC - Moderate. Was previously No Needs, but has recently begun to suffer from Seizures.
Other - No Needs.

I agree with the scores, but would appreciate some advice on the ICB's decision that mum does not have a primary health need. I would have thought that the nature of her condition lends itself to an intensity in the quantity of care required. There is certainly interaction within many of the domains which would suggest some level of complexity. The assessor has stated that mum's behavioural issues do not give rise to unpredictability because the carers/nurses have come to expect it and have normalised it, which brings me to the concept of the 'well managed need is still a need'.

In view of the above, is it worth my while initiating an appeal? Thank you for reading this.

Thank you for your question. It is difficult to say whether an appeal is “worth your time” as this means different things for different people. For some, it can be worth exploring to know that you have tried everything you can. For others, it might be too draining. What we would say, is that Mum’s DST scores look very close to deeming her eligible, so it might not take too much to get her over the line.


As you agree with the scores across the care domains, you might choose to focus your appeal letter on the 4 key characteristics. It is worth looking at the National Framework and using their own literature to argue eligibility, alongside any evidence you have access to.

Regarding the two points you have raised, you are correct that the 4 characteristics can be considered in terms of how they interact with each other, however, they can also be considered individually. The framework states that “each of these characteristics may, alone or in combination, demonstrate a primary health need, because of the quality and/or quantity of care that is required to meet the individual’s needs” Pg 24, 61 (National Framework for CHC, 2022)

Regarding behaviour, do care staff agree that they can anticipate Mum’s needs? Have a look at her care notes for any behaviour-related incidents. And if they can anticipate her, this does not mean the need is any less intense. The framework comments on this; “The decision-making rationale should not marginalise a need just because it is successfully managed: well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need, such that the active management of this need is reduced or no longer required, will this have a bearing on NHS Continuing Healthcare eligibility” Pg 51, 162 (National Framework for CHC, 2022)


You mentioned that Mum is now at the ‘end stage’ of her illness. It might be worth considering a Fast Track application for CHC. The funding would not be backdated as it would with an appeal but would start from a new application. You could do this as well as pursuing the appeal if you wish. Fast Track CHC is available for individuals with a “rapidly deteriorating condition that may be entering a terminal phase”. It does not require a full MDT assessment or the completion of a DST. An “appropriate clinician” can complete the Fast Track form, confirming that a person is in at “end of life”. This could be a registered nurse or medical practitioner. It is a comparatively straightforward process, providing one professional agrees with you about Mum’s stage of illness, and you can access the form on the government website.

 

[luggy]

Thank you for your question. It is difficult to say whether an appeal is “worth your time” as this means different things for different people. For some, it can be worth exploring to know that you have tried everything you can. For others, it might be too draining. What we would say, is that Mum’s DST scores look very close to deeming her eligible, so it might not take too much to get her over the line.


As you agree with the scores across the care domains, you might choose to focus your appeal letter on the 4 key characteristics. It is worth looking at the National Framework and using their own literature to argue eligibility, alongside any evidence you have access to.

Regarding the two points you have raised, you are correct that the 4 characteristics can be considered in terms of how they interact with each other, however, they can also be considered individually. The framework states that “each of these characteristics may, alone or in combination, demonstrate a primary health need, because of the quality and/or quantity of care that is required to meet the individual’s needs” Pg 24, 61 (National Framework for CHC, 2022)

Regarding behaviour, do care staff agree that they can anticipate Mum’s needs? Have a look at her care notes for any behaviour-related incidents. And if they can anticipate her, this does not mean the need is any less intense. The framework comments on this; “The decision-making rationale should not marginalise a need just because it is successfully managed: well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need, such that the active management of this need is reduced or no longer required, will this have a bearing on NHS Continuing Healthcare eligibility” Pg 51, 162 (National Framework for CHC, 2022)


You mentioned that Mum is now at the ‘end stage’ of her illness. It might be worth considering a Fast Track application for CHC. The funding would not be backdated as it would with an appeal but would start from a new application. You could do this as well as pursuing the appeal if you wish. Fast Track CHC is available for individuals with a “rapidly deteriorating condition that may be entering a terminal phase”. It does not require a full MDT assessment or the completion of a DST. An “appropriate clinician” can complete the Fast Track form, confirming that a person is in at “end of life”. This could be a registered nurse or medical practitioner. It is a comparatively straightforward process, providing one professional agrees with you about Mum’s stage of illness, and you can access the form on the government website.

Thank you so much for your reply. I agree that I need to focus on the 4 Key Indicators and the levels of mum's distress which have certainly been marginalised.

Mum is at 'end stage' - the GP, Community Matron and the Care Plan all say so. I have already requested a Fast Track application, but both the CHC Assessor and mum's GP refused to complete one on the grounds that mum is still eating and drinking, albeit very small amounts. The National Framework does not mention anything about not eating or drinking.

I will go ahead with the appeal. Your advice is much appreciated.

 

[AS CHC Team]

@luggy
I think the answer is YES that an appeal is warranted. You did not mention the text of the Primary Health Needs Test on which the decision about eligibility must rest. The DST is a decision support tool, the actual decision will rest on a carefully crafted essay under the four headings Nature, Intensity, Complexity and Unpredictability, this essay describes the uniqueness of the particular individual's combination of health needs and personal and social care needs and comes to a conclusion whether the health needs predominate or not. Para 60 on page 20 in the Framework refers to the totality of need such that individual components of need and the health care needed to meet those needs might not qualify for CHC but multiple needs in the one individual , when considered together do add up to a primary health need.

One other point needs mentioning about the Fast Track route, it is not the imminence of death that counts, it is the continuing need for health care during that time that is assessed. Many of us will need careful high quality personal care towards the end of life and actual health interventions to meet health needs could well be being withdrawn if deemed futile. or adding to distress, in these circumstances continuing health care will be getting less so a panel would not agree to eligibility.

Looking at the levels and accompanying text there may well be a totality of need and a health dimension to many of the elements of personal care she is receiving. There is potential for complexity, moving and handling, to preserve skin integrity, contracted limbs, impediments to taking food, weight loss threatening skin health, threats to skin health from incontinence, resistance to care etc will all adversely interact. Behaviour and seizures may have a degree of unpredictability.

It all deserves a close look.

[ From AS CHC Team (second)]