Your CHC Appeals support thread

[Dave63]

No idea about the SS question but the CHC, it would appear, are taking the opportunity to use reviews to suggest patient needs have significantly changed since the original MDT and therefore warrant another full MDT.

The framework specifically says this should only happen if there is 'clear evidence' that needs have changed. The review is only to verify that the care plan in place is still sufficient for the patients needs but, if it's obvious that the patients needs have significantly changed, only then should a new full MDT be arranged and they should use the original DST to evidence those changes.

The fact CCG's appear to be using the review process as a means to withdraw funding is reprehensible, but knowing something and proving something are two different beasts. However, as the americans say: If it walks like a duck and it quacks like a duck, it's probably a duck!

 

[Ruth32]

@Dave63

Thanks for the reply, yep it does seem iffy as the review was meant to check primarily that mums needs were being met and there was absolutely no mention of that in the reviews. Interestingly I have just had a phone call from mums care home and they had an email yesterday informing them, so that is the SS & Care home informed but not mum or her representative.

 

[AS CHC Team]

Update on my mum's situation and I am just wondering if it is normal for SS to phone you to say that CHC has now been withdrawn?

44 days after mums 3 month month review and 18 days after her full assessment, I have received a phone call from SS today to say mums funding will be withdrawn in a months time but she has been awarded nurse funding instead.

I have heard absolutely nothing from the CHC, no letter, email or phone call, so I was really surprised that SS phoned me and the SS lady was really surprised that I hadn't been informed as of yet. She mentioned about a lot of funding being turned down regarding the care home notes and strongly suggested I appeal the decision.

It has been left that I will contact SS when I receive any information from the CHC because I told her, I can't tell her anything when I don't know anything myself. So I am preparing myself for an appeal, when and if I get informed about this from CHC.

So if anyone can answer the question regarding SS notifying me instead of the CHC themselves, I would appreciate it. I thought CHC had to inform me themselves.

Thanks in advance

I think the social worker was informally letting you know which way the wind is blowing. The formal letter will come from the Integrated Care Board or its subsection who (in the shape of a CHC manager) will have first considered the review findings and discussed them with the reviewer. You and others are right that any hint that healthcare needs have diminished will attract their attention. You are also right about care home notes not always conveying the full picture because of linguistic problems hence the need to make your notes about untoward incidents eg in behaviour for example. Such extra notes will help an appeal to the Independent Review Panel.
TonyL

 

[Ruth32]

Thank you Tony. Can I also just ask one more thing.

At the MDT, there was the assessor who saw mum for 1 minute and asked her one question and then mum wouldn't engage with her. The SS who didn't see mum at all, previously, during or afterwards and the Nurse from the Care Home. The SS left before the end of the meeting and when I asked if her and the assessor would discuss the meeting afterwards and would the SS be informed of the decision. I got told quite clearly no, that this didn't happen anymore and the SS wouldn't know what the assessor would put forward to the board and they wouldn't know the outcome until I did.

So is the nurse from the home & SS meant to be part of the MDT and have an input into what should be put forward to the board, i.e. be part of the meeting afterwards to discuss what should be put forward to the board. Or are they there just to put their input into the domains and not be involved in any part of the decision making ?

Many thanks
Ruth

 

[AS CHC Team]

Thank you Tony. Can I also just ask one more thing.

At the MDT, there was the assessor who saw mum for 1 minute and asked her one question and then mum wouldn't engage with her. The SS who didn't see mum at all, previously, during or afterwards and the Nurse from the Care Home. The SS left before the end of the meeting and when I asked if her and the assessor would discuss the meeting afterwards and would the SS be informed of the decision. I got told quite clearly no, that this didn't happen anymore and the SS wouldn't know what the assessor would put forward to the board and they wouldn't know the outcome until I did.

So is the nurse from the home & SS meant to be part of the MDT and have an input into what should be put forward to the board, i.e. be part of the meeting afterwards to discuss what should be put forward to the board. Or are they there just to put their input into the domains and not be involved in any part of the decision making ?

Many thanks
Ruth

Yes, if this meeting was to reassess eligibility by completion of the DST by a properly constituted MDT the structure of the MDT is laid down, and the DST form has space for the names and signatures of participants.
See NHS continuing healthcare decision support tool referral form

If the meeting was to check that needs were being met then probably not, if the needs are being met and have not changed then that should be it till the next review. If the healthcare needs have ameliorated then that would prompt a new MDT meeting and completion of the DST afresh.

Bear in mind that healthcare needs can lessen although the personal care needs are the same and this does not mean they think the person is getting better which manifestly they are not able to.
TonyL
PS I have studied your earlier entry and realise this was a fresh DST by an MDT some 26 days after the review.

 

[Ruth32]

Yes, if this meeting was to reassess eligibility by completion of the DST by a properly constituted MDT the structure of the MDT is laid down, and the DST form has space for the names and signatures of participants.
See NHS continuing healthcare decision support tool referral form

If the meeting was to check that needs were being met then probably not, if the needs are being met and have not changed then that should be it till the next review. If the healthcare needs have ameliorated then that would prompt a new MDT meeting and completion of the DST afresh.

Bear in mind that healthcare needs can lessen although the personal care needs are the same and this does not mean they think the person is getting better which manifestly they are not able to.
TonyL
PS I have studied your earlier entry and realise this was a fresh DST by an MDT some 26 days after the review.

Thank you, I have now received the paperwork. Going to try and keep this simple. On the personal details for the MDT members, there was Lead Assessor, SS & Staff - head nurse from nursing home. On the page at the back for signatures for MDT members was lead assessor & SS - No care home nurse. There was also no signature for the SS.

One glaring error is that mum was agreed as High in Nutrition, but it was marked down as medium on the graph. She was also lowered from High to Medium on P&E, but upped from no needs to medium on breathing. Everything else stayed the same. So 1 severe, 4 highs, 5 mediums and 2 no needs if marked correctly. The decision to withdraw seems to come from the 4 indicators, which contradict each other I think.

The P&E, I had argued that mum had drawn from any attempts to engage in care planning, support and daily activities, but the assessor said that was due to cognition. My thoughts are that all these things overlap.

Intensity - it says, requires monitoring and supervisions on a day to basis, appears intense. Carers continue to provide care with oversight from nurses. Personal care takes up to 1hr each time.

Complexity - challenging behaviour mainly during personal care every 2-4 hrs. Low level planned interventions are used. Staff report the can complete cared interventions and meet needs. Although interaction between several domains, the needs arising do not require enhanced skills and there do not indicate the complexity of needs associated with a primary health need.

Unpredictability. Her condition is deteriorating gradually not rapidly. Needs can be anticipated and addressed by planned care interventions.

So I am thinking that possibly a lot of this is because it is well managed. Mum is in a specialist dementia home specialising also in Challenging Behaviour. All the staff are specifically trained for these situations and if mum was anywhere else, it would be incredibly bad. Mum actually got asked to leave her last home because they couldn't cope.

Many thanks for your input.

 

[AS CHC Team]

Thank you, I have now received the paperwork. Going to try and keep this simple. On the personal details for the MDT members, there was Lead Assessor, SS & Staff - head nurse from nursing home. On the page at the back for signatures for MDT members was lead assessor & SS - No care home nurse. There was also no signature for the SS.

One glaring error is that mum was agreed as High in Nutrition, but it was marked down as medium on the graph. She was also lowered from High to Medium on P&E, but upped from no needs to medium on breathing. Everything else stayed the same. So 1 severe, 4 highs, 5 mediums and 2 no needs if marked correctly. The decision to withdraw seems to come from the 4 indicators, which contradict each other I think.

The P&E, I had argued that mum had drawn from any attempts to engage in care planning, support and daily activities, but the assessor said that was due to cognition. My thoughts are that all these things overlap.

Intensity - it says, requires monitoring and supervisions on a day to basis, appears intense. Carers continue to provide care with oversight from nurses. Personal care takes up to 1hr each time.

Complexity - challenging behaviour mainly during personal care every 2-4 hrs. Low level planned interventions are used. Staff report the can complete cared interventions and meet needs. Although interaction between several domains, the needs arising do not require enhanced skills and there do not indicate the complexity of needs associated with a primary health need.

Unpredictability. Her condition is deteriorating gradually not rapidly. Needs can be anticipated and addressed by planned care interventions.

So I am thinking that possibly a lot of this is because it is well managed. Mum is in a specialist dementia home specialising also in Challenging Behaviour. All the staff are specifically trained for these situations and if mum was anywhere else, it would be incredibly bad. Mum actually got asked to leave her last home because they couldn't cope.

Many thanks for your input.

The subject of withdrawal from care planning does attract some controversy. It is aimed at covering those who for whatever reason disengage from care planning, turning the face away or to the wall, keeping the mouth shut when food is offered, avoiding eye contact - all usually in the context of depression. It is distinct from the situation in which loss of cognition deprives someone of the ability to participate in care planning and is therefore considered as part of that domain.

I can't really respond to your other points which would require a line by line scrutiny of the evidence, your observations and the completed DST to see how best to argue the case. Alzheimer's Society does offer a tiered system of support to those appealing a 'No' decision.
TonyL

 

[luggy]

Thank you, I have now received the paperwork. Going to try and keep this simple. On the personal details for the MDT members, there was Lead Assessor, SS & Staff - head nurse from nursing home. On the page at the back for signatures for MDT members was lead assessor & SS - No care home nurse. There was also no signature for the SS.

One glaring error is that mum was agreed as High in Nutrition, but it was marked down as medium on the graph. She was also lowered from High to Medium on P&E, but upped from no needs to medium on breathing. Everything else stayed the same. So 1 severe, 4 highs, 5 mediums and 2 no needs if marked correctly. The decision to withdraw seems to come from the 4 indicators, which contradict each other I think.

The P&E, I had argued that mum had drawn from any attempts to engage in care planning, support and daily activities, but the assessor said that was due to cognition. My thoughts are that all these things overlap.

Intensity - it says, requires monitoring and supervisions on a day to basis, appears intense. Carers continue to provide care with oversight from nurses. Personal care takes up to 1hr each time.

Complexity - challenging behaviour mainly during personal care every 2-4 hrs. Low level planned interventions are used. Staff report the can complete cared interventions and meet needs. Although interaction between several domains, the needs arising do not require enhanced skills and there do not indicate the complexity of needs associated with a primary health need.

Unpredictability. Her condition is deteriorating gradually not rapidly. Needs can be anticipated and addressed by planned care interventions.

So I am thinking that possibly a lot of this is because it is well managed. Mum is in a specialist dementia home specialising also in Challenging Behaviour. All the staff are specifically trained for these situations and if mum was anywhere else, it would be incredibly bad. Mum actually got asked to leave her last home because they couldn't cope.

Many thanks for your input.

Hi Ruth32. It sounds as if we're at a similar stage with our CHC journeys. Our DST's sound as if they were written by the same person - I wonder if we come under the same ICB - LOL!

My mum was scored 'High' in the Behaviour domain, but this was only shown on the chart as 'Moderate'. I contacted the ICB, requesting that they correct the typographical error, which they did and they sent me a revised copy of the DST.

I also argued that mum had withdrawn from care planning etc in the P&E domain, but it was explained to me that you have to make a conscious decision to withdraw from something, which a person with advanced dementia cannot do.

My mum got 1 Severe, 6 Highs, 3 Mods and 2 No Needs. We fell down on the 4 Key Indicators, like yourself.

I'm just beginning to gather my evidence for an appeal. Some days I'm full of fight, but sometimes I wonder if it's worth the hassle and I feel like giving up and living my own life.

I wish you and your mum all the very best.

 

[luggy]

The subject of withdrawal from care planning does attract some controversy. It is aimed at covering those who for whatever reason disengage from care planning, turning the face away or to the wall, keeping the mouth shut when food is offered, avoiding eye contact - all usually in the context of depression. It is distinct from the situation in which loss of cognition deprives someone of the ability to participate in care planning and is therefore considered as part of that domain.

I can't really respond to your other points which would require a line by line scrutiny of the evidence, your observations and the completed DST to see how best to argue the case. Alzheimer's Society does offer a tiered system of support to those appealing a 'No' decision.
TonyL

Hi Tony. I'd be interested to know how I might be able to access the tiered system of support offered by the Alzheimer's Society please? Many thanks.

 

[Ruth32]

Hi Ruth32. It sounds as if we're at a similar stage with our CHC journeys. Our DST's sound as if they were written by the same person - I wonder if we come under the same ICB - LOL!

My mum was scored 'High' in the Behaviour domain, but this was only shown on the chart as 'Moderate'. I contacted the ICB, requesting that they correct the typographical error, which they did and they sent me a revised copy of the DST.

I also argued that mum had withdrawn from care planning etc in the P&E domain, but it was explained to me that you have to make a conscious decision to withdraw from something, which a person with advanced dementia cannot do.

My mum got 1 Severe, 6 Highs, 3 Mods and 2 No Needs. We fell down on the 4 Key Indicators, like yourself.

I'm just beginning to gather my evidence for an appeal. Some days I'm full of fight, but sometimes I wonder if it's worth the hassle and I feel like giving up and living my own life.

I wish you and your mum all the very best.

Hi Luggy, I am doing the exact same as you regarding collecting evidence. I am not sure about you but this DST was done after the 3 month review and re the P&E domain, it was noted as high at the 1st DST and it actually states that she has anxiety because of her cognition and this causes outbursts of challenging behaviour a multiple times a day.

This situation has actually not changed, but the care staff manage it because they are trained properly to do so. So I can't understand the reasoning that the assessor gave me as cognition being the problem, when it was the problem at the 1st DST and she got marked high because of it.

Yes, like you, up & down days. I decided over the weekend not to look at any paperwork for 24 hrs and then I find myself not sleeping or even dreaming about CHC, getting out of bed at 3am in the morning and trawling through all the paperwork again. Not great for our mental health or health in general !

Wishing you the best too and Tony, any details about the tiered system of support, I would be interested in too.

Many thanks

 

[AS CHC Team]

Hi Tony. I'd be interested to know how I might be able to access the tiered system of support offered by the Alzheimer's Society please? Many thanks.

The Alzheimer's website has grown and become more complex so it it may be difficult to find what you want. Try the webpage below which offers routes to assistance, includes phone number and email access, and some background to the service.

Help for people affected by dementia when appealing against a decision about NHS continuing healthcare

Many people with dementia are refused an NHS continuing healthcare package, but our volunteers can support people who appeal.

www.alzheimers.org.uk

TonyL

 

[AS CHC Team]

Hi Luggy, I am doing the exact same as you regarding collecting evidence. I am not sure about you but this DST was done after the 3 month review and re the P&E domain, it was noted as high at the 1st DST and it actually states that she has anxiety because of her cognition and this causes outbursts of challenging behaviour a multiple times a day.

This situation has actually not changed, but the care staff manage it because they are trained properly to do so. So I can't understand the reasoning that the assessor gave me as cognition being the problem, when it was the problem at the 1st DST and she got marked high because of it.

Yes, like you, up & down days. I decided over the weekend not to look at any paperwork for 24 hrs and then I find myself not sleeping or even dreaming about CHC, getting out of bed at 3am in the morning and trawling through all the paperwork again. Not great for our mental health or health in general !

Wishing you the best too and Tony, any details about the tiered system of support, I would be interested in too.

Many thanks

The Alzheimer's website has grown and become more complex so it it may be difficult to find what you want. Try the webpage below which offers routes to assistance, includes phone number and email access, and some background to the service.

Help for people affected by dementia when appealing against a decision about NHS continuing healthcare

Many people with dementia are refused an NHS continuing healthcare package, but our volunteers can support people who appeal.

www.alzheimers.org.uk

TonyL

 

[Dave63]

Hi Luggy, I am doing the exact same as you regarding collecting evidence. I am not sure about you but this DST was done after the 3 month review and re the P&E domain, it was noted as high at the 1st DST and it actually states that she has anxiety because of her cognition and this causes outbursts of challenging behaviour a multiple times a day.

This situation has actually not changed, but the care staff manage it because they are trained properly to do so. So I can't understand the reasoning that the assessor gave me as cognition being the problem, when it was the problem at the 1st DST and she got marked high because of it.

Yes, like you, up & down days. I decided over the weekend not to look at any paperwork for 24 hrs and then I find myself not sleeping or even dreaming about CHC, getting out of bed at 3am in the morning and trawling through all the paperwork again. Not great for our mental health or health in general !

Wishing you the best too and Tony, any details about the tiered system of support, I would be interested in too.

Many thanks

I agree with what you said previously @Ruth32 , it sounds very much like a managed need. It's surely no different to medication in that if the type of care she receives was reduced or removed she would be back to square one?

The problem we found with the cognition and P&E domains was that mum was assessed based on one very short visit. The issue with that is mums behaviour and cognition would fluctuate. She would be relatively fine (usually) during the morning/early afternoon when being assessed but that would change significantly in the late afternoon/evening.

Mums first mental health nurse had over nine months of experience with visits covering every part of the day which conclusively evidenced the complexity and unpredictability of mums situation at her first MDT.

Unfortunately, we had to move mum from the home she was in at the time of the first MDT because of safe guarding issues and the CHC insisted on having another MDT due to the move. The new home was a couple of miles away but just over the border from the original LA and so another mental health team had to take over. During a ten minute visit by the new CMHT (I was there) she was assessed as being a completely different person to the previous nine months. Those previous nine months of evidence provided during the first MDT was disregarded in favour of a single sheet letter from the new CMHT.

Sorry for rambling.

 

[AS CHC Team]

I agree with what you said previously @Ruth32 , it sounds very much like a managed need. It's surely no different to medication in that if the type of care she receives was reduced or removed she would be back to square one?

The problem we found with the cognition and P&E domains was that mum was assessed based on one very short visit. The issue with that is mums behaviour and cognition would fluctuate. She would be relatively fine (usually) during the morning/early afternoon when being assessed but that would change significantly in the late afternoon/evening.

Mums first mental health nurse had over nine months of experience with visits covering every part of the day which conclusively evidenced the complexity and unpredictability of mums situation at her first MDT.

Unfortunately, we had to move mum from the home she was in at the time of the first MDT because of safe guarding issues and the CHC insisted on having another MDT due to the move. The new home was a couple of miles away but just over the border from the original LA and so another mental health team had to take over. During a ten minute visit by the new CMHT (I was there) she was assessed as being a completely different person to the previous nine months. Those previous nine months of evidence provided during the first MDT was disregarded in favour of a single sheet letter from the new CMHT.

Sorry for rambling.

The subject of "Managed Need" deserves some attention. Some continuing healthcare needs are managed by the NHS even though the recipient is in a care home. The GP might for example issue regular doses of a medicine, reviewed at intervals eg monthly or annually and the care home staff administer it. A more serious example might require the care home staff to make observations and themselves adjust the dose using their own judgement. The levels of skill and responsibility required of the care home staff are quite different in these two situations and will be reflected in the grading of the DST domain of care and the discussion in the primary health needs test.

Concrete examples to illustrate the point are diabetes stable, unchanging oral medication, annual review, or diabetes which is unstable, staff do blood tests two or three times a day, care home staff might need to give more insulin or reduce the dose depending on the result. Epilepsy - controlled on tablets, no fits for over a year annual GP review, or frequent - a few times a week - fits needing careful positioning, perhaps oxygen and medication administered rectally, and constant attention during recovery from the attack. Challenging behaviour may require techniques such as retreat and try later, distraction, or medication, is the pattern predictable and helped by regular timed medication or does the behaviour take the form of sudden outbursts at different times which will make management more difficult.
TonyL

 

[Mts]

Hi
Mum had a chc checklist it was not used as the said mum needs a mental heslth assesment is this normal practice

 

[Ruth32]

The subject of "Managed Need" deserves some attention. Some continuing healthcare needs are managed by the NHS even though the recipient is in a care home. The GP might for example issue regular doses of a medicine, reviewed at intervals eg monthly or annually and the care home staff administer it. A more serious example might require the care home staff to make observations and themselves adjust the dose using their own judgement. The levels of skill and responsibility required of the care home staff are quite different in these two situations and will be reflected in the grading of the DST domain of care and the discussion in the primary health needs test.

Concrete examples to illustrate the point are diabetes stable, unchanging oral medication, annual review, or diabetes which is unstable, staff do blood tests two or three times a day, care home staff might need to give more insulin or reduce the dose depending on the result. Epilepsy - controlled on tablets, no fits for over a year annual GP review, or frequent - a few times a week - fits needing careful positioning, perhaps oxygen and medication administered rectally, and constant attention during recovery from the attack. Challenging behaviour may require techniques such as retreat and try later, distraction, or medication, is the pattern predictable and helped by regular timed medication or does the behaviour take the form of sudden outbursts at different times which will make management more difficult.
TonyL

Thanks Tony. Sorry for not saying thanks earlier, have just been snowed under with mum etc. Mum does have challenging behaviour and it is now managed mainly by lots of attention, retreating and trying again later etc. She is violent during personal care though.

I am getting all the paperwork together to appeal and then will put my letter forward. As mentioned before I was concerned that the CHC assessor didn't consult with any of the MDT after the meeting and just made up her mind herself. I have just had a reply from SS regarding this which is as follows :-

"the CHC assessors make their minds up at the time I argued that some scores should be higher which the daughter was aware of as she was present. However, she needs to follow the appeals process and I had no further involvement".

This to me seems the SS is saying that she argued points at the meeting which I attended but didn't have any input into the decision afterwards. Is this allowed ? I thought they had to chat about this afterwards and come to a joint decision.

Sorry about all the questions, I did contact the number for the appeals on here but apparently this service is on hold at the moment and they put me in contact with Beacon, who I am waiting to hear back from.

If anyone has any concrete knowledge of whether a CHC Assessor can make a decision by themselves it would be really appreciated as I want to get my appeal letter correct.

Many thanks

 

[AS CHC Team]

Sorry about all the questions, I did contact the number for the appeals on here but apparently this service is on hold at the moment and they put me in contact with Beacon, who I am waiting to hear back from.

Hi Ruth, I'm sorry you have been told our appeals service is on hold that is no longer the case. We are available to offer support and will be happy to connect with you directly and offer guidance. Please send us an email to nhscc@alzheimers.org.uk and we arrange a telephone call. Heather

 

[Ruth32]

Hi Ruth, I'm sorry you have been told our appeals service is on hold that is no longer the case. We are available to offer support and will be happy to connect with you directly and offer guidance. Please send us an email to nhscc@alzheimers.org.uk and we arrange a telephone call. Heather

Many thanks. I will send an email over straight away. Ruth

 

[AS CHC Team]

Thanks Tony. Sorry for not saying thanks earlier, have just been snowed under with mum etc. Mum does have challenging behaviour and it is now managed mainly by lots of attention, retreating and trying again later etc. She is violent during personal care though.

I am getting all the paperwork together to appeal and then will put my letter forward. As mentioned before I was concerned that the CHC assessor didn't consult with any of the MDT after the meeting and just made up her mind herself. I have just had a reply from SS regarding this which is as follows :-

"the CHC assessors make their minds up at the time I argued that some scores should be higher which the daughter was aware of as she was present. However, she needs to follow the appeals process and I had no further involvement".

This to me seems the SS is saying that she argued points at the meeting which I attended but didn't have any input into the decision afterwards. Is this allowed ? I thought they had to chat about this afterwards and come to a joint decision.

Sorry about all the questions, I did contact the number for the appeals on here but apparently this service is on hold at the moment and they put me in contact with Beacon, who I am waiting to hear back from.

If anyone has any concrete knowledge of whether a CHC Assessor can make a decision by themselves it would be really appreciated as I want to get my appeal letter correct.

Many thanks

@Ruth32
The National Framework makes clear that it is the responsibility of the MDT to do the DST and the members sign it off. The NF also makes clear that if members disagree about the weighting of a domain then the higher weighting should be chosen. See Paras 139, 140 and 141 page 45; see also paras 32.1 and 32.2 on page 142 of the NF which quote from Practice Guidance and cover the question of MDT members disagreeing on a weighting of a domain.

From a practical point of view one can imagine that an MDT might be very inexperienced and that someone from the CHC department who is present at the meeting will help team members reach agreement, perhaps by citing examples of need which would justify particular weightings and so help and educate the MDT. This is quite different from bulldozing an MDT down a particular route or simply disregarding the contribution of members. I hope this helps.

I am glad to see the later exchanges about you accessing the AS CHC service.
TonyL

 

[AS CHC Team]

Many thanks. I will send an email over straight away. Ruth

Thanks Ruth, we have received your email we will be in touch soon.