Your CHC Appeals support thread

[Ruth32]

@Ruth32
Not quite, it looks as though the ICB and SSD have come to an agreement, that the ICB will not formally request a social worker's attendance. The National Framework makes clear that if an ICB actually requests a social worker then the SSD must provide one. It's that way round. I suspect that the SSD is short of staff, the SSD could for instance have said that if a SW is requested then fewer social service assessments of inpatients awaiting discharge will be done, and given the well publicised problems of delays to hospital discharge you can see how such a situation could arise.

TonyL

Ahh, that is interesting because I asked ICB if a social worker would be attending and they said they had informed them and invited them to attend but they didn't have to attend. Which was different to what I got told 3 months ago at mums initial assessment which she was awarded CHC funding for. SW went in and saw mum and then phoned me and had a chat about background history.

So far this time we had the appointment for the 3 month review which the ICB assessor didn't show up at, so in the end we did it online in the nurses office at the nursing home. The assessor never saw mum. It was agreed that mums needs hadn't changed in 3 months but the assessor said it wasn't her decision to say what the outcome would be and 2 weeks later I am told they had changed and the assessor had marked her down from high needs to moderate needs in 4 domains, which I am shocked at.

This time, I am hoping she does actually arrive, the nursing home nurse and manager have been invited as well as myself, but so far the assessor has still not been to see mum and I doubt she will do that over the weekend, you never know.

I wouldn't want to take a SW away from anyone else who has needs, but my mum has needs to0 and I found it really helpful having another person in the original meeting who had actually taken time to visit mum and put their input in.

Many thanks for all your help and advice, it is really helpful with trying to understand what is correct and what is wrong.

Ruth

 

[Sonya1]

Update for anyone who might be interested - we had the DST meeting last Tuesday with ourselves, social worker, NH manager and CHC nurse assessor. It took an hour and a half. Each domain was discussed with the CHC nurse inviting us to add comments, question content and so on. She explained how she would be stressing how each of the domains impacted on the others to demonstrate complexity. We were able to add that we favoured a NH that was both well recommended and very accessible for us to visit regularly and she wrote in the reasons why that request should be considered. On the Friday, we were told the funding request had been accepted by the panel. Today, I had a call from the bed finding team at CHC to say our favoured home had come forward to say they could meet the required needs, so they have been asked to complete their detailed submission of how they would meet each need and the needs as a whole. CHC lady said the costings will be covered in full (did NOT expect that)
Transfer expected to be before the weekend.
So- left hospital into D2A bed on 1 Jan. NH manager knew we were hoping to apply for CHC. The CHC Nurse Assessor visited the home 2 weeks ago and assessed Dad, also spoke at length with Mum, and with the NH manager. Checklist completed. CHC Assessor then sent me form to express my views also before meeting. Full DST took place last week. Decision Last week. Bed found hopefully today.
The NH manager of the D2A beds took charge of absolutely all of it...the whole CHC process took about 3 weeks.

It feels like it's going to be an April Fool's joke somehow!!

Dad didnt score any Priorities, but 2 severes, 3 Highs and the rest medium, low or no needs. It was the demonstration of complexity caused by the way each domain affected the others that seemed to be the big success I feel.

In my view, this was because a) we got a decent CHC nurse assessor b) I had been able to demonstrate that I was very aware of how things should be carried out and of the National Framework and c) The absolutely stunning attention to detail of the D2A and the logs which were updated every 30 minutes, 24 hours a day.

I will note that Dad was identified as a severe falls risk due to moderate idiopathic Parkinsons and a total lack of awareness that he is at risk, plus his habit of resisting assistance, pushing carers away and so on. One of the things I have learned is that "Behaviour that Challenges" isn't just about aggression (which is what I always believed) but is any behaviour that makes that domain more complex to manage and that might need specialist/skilled intervention to resolve.

So really important to be aware of the 12 domains in the CHC checklist, and to really think about how one might impact on another. We were very lucky as our CHC assessor had already done this (done her job properly) but had she not, we would have been able to make sure that the area was covered correctly.

Now trying not to worry about the 3 month review............

 

[AS CHC Team]

Update for anyone who might be interested - we had the DST meeting last Tuesday with ourselves, social worker, NH manager and CHC nurse assessor. It took an hour and a half. Each domain was discussed with the CHC nurse inviting us to add comments, question content and so on. She explained how she would be stressing how each of the domains impacted on the others to demonstrate complexity. We were able to add that we favoured a NH that was both well recommended and very accessible for us to visit regularly and she wrote in the reasons why that request should be considered. On the Friday, we were told the funding request had been accepted by the panel. Today, I had a call from the bed finding team at CHC to say our favoured home had come forward to say they could meet the required needs, so they have been asked to complete their detailed submission of how they would meet each need and the needs as a whole. CHC lady said the costings will be covered in full (did NOT expect that)
Transfer expected to be before the weekend.
So- left hospital into D2A bed on 1 Jan. NH manager knew we were hoping to apply for CHC. The CHC Nurse Assessor visited the home 2 weeks ago and assessed Dad, also spoke at length with Mum, and with the NH manager. Checklist completed. CHC Assessor then sent me form to express my views also before meeting. Full DST took place last week. Decision Last week. Bed found hopefully today.
The NH manager of the D2A beds took charge of absolutely all of it...the whole CHC process took about 3 weeks.

It feels like it's going to be an April Fool's joke somehow!!

Dad didnt score any Priorities, but 2 severes, 3 Highs and the rest medium, low or no needs. It was the demonstration of complexity caused by the way each domain affected the others that seemed to be the big success I feel.

In my view, this was because a) we got a decent CHC nurse assessor b) I had been able to demonstrate that I was very aware of how things should be carried out and of the National Framework and c) The absolutely stunning attention to detail of the D2A and the logs which were updated every 30 minutes, 24 hours a day.

I will note that Dad was identified as a severe falls risk due to moderate idiopathic Parkinsons and a total lack of awareness that he is at risk, plus his habit of resisting assistance, pushing carers away and so on. One of the things I have learned is that "Behaviour that Challenges" isn't just about aggression (which is what I always believed) but is any behaviour that makes that domain more complex to manage and that might need specialist/skilled intervention to resolve.

So really important to be aware of the 12 domains in the CHC checklist, and to really think about how one might impact on another. We were very lucky as our CHC assessor had already done this (done her job properly) but had she not, we would have been able to make sure that the area was covered correctly.

Now trying not to worry about the 3 month review............

@Sonya1
Thanks for the update, well done - because it is a worrying trial going the through the CHC maze, and it's good that you had a fair-minded assessor.
Bear in mind that as physical frailty increases challenging behaviour may diminish which could affect eligibility, on the other hand increased frailty brings its own complications which could increase health needs so watch for that.
TonyL

 

[Sonya1]

@Sonya1
Thanks for the update, well done - because it is a worrying trial going the through the CHC maze, and it's good that you had a fair-minded assessor.
Bear in mind that as physical frailty increases challenging behaviour may diminish which could affect eligibility, on the other hand increased frailty brings its own complications which could increase health needs so watch for that.
TonyL

Thanks Tony .... I do worry about the 3 month review because so much will depend on the quality of logs by the new Nursing home, so will be checking notes regularly. Yes, I see how challenging behaviour could diminish as things progress, Dad may become more passive as he becomes more frail and the 1:1 need could in principle decrease. However he is physically walking quite well at the moment with the 1:1 support which, regardless of funding, makes us happier because it allows him at least a bit of afeeling of being alive! Although cognitively he seems oblivious to objects or people in his path and to things like whether a door is open or closed! And if carer steps back, he immediately wavers and becomes wobbly and disoriented, then agitated.

 

[Dave63]

Brilliant news @Sonya1

 

[Ruth32]

Update for anyone who might be interested - we had the DST meeting last Tuesday with ourselves, social worker, NH manager and CHC nurse assessor. It took an hour and a half. Each domain was discussed with the CHC nurse inviting us to add comments, question content and so on. She explained how she would be stressing how each of the domains impacted on the others to demonstrate complexity. We were able to add that we favoured a NH that was both well recommended and very accessible for us to visit regularly and she wrote in the reasons why that request should be considered. On the Friday, we were told the funding request had been accepted by the panel. Today, I had a call from the bed finding team at CHC to say our favoured home had come forward to say they could meet the required needs, so they have been asked to complete their detailed submission of how they would meet each need and the needs as a whole. CHC lady said the costings will be covered in full (did NOT expect that)
Transfer expected to be before the weekend.
So- left hospital into D2A bed on 1 Jan. NH manager knew we were hoping to apply for CHC. The CHC Nurse Assessor visited the home 2 weeks ago and assessed Dad, also spoke at length with Mum, and with the NH manager. Checklist completed. CHC Assessor then sent me form to express my views also before meeting. Full DST took place last week. Decision Last week. Bed found hopefully today.
The NH manager of the D2A beds took charge of absolutely all of it...the whole CHC process took about 3 weeks.

It feels like it's going to be an April Fool's joke somehow!!

Dad didnt score any Priorities, but 2 severes, 3 Highs and the rest medium, low or no needs. It was the demonstration of complexity caused by the way each domain affected the others that seemed to be the big success I feel.

In my view, this was because a) we got a decent CHC nurse assessor b) I had been able to demonstrate that I was very aware of how things should be carried out and of the National Framework and c) The absolutely stunning attention to detail of the D2A and the logs which were updated every 30 minutes, 24 hours a day.

I will note that Dad was identified as a severe falls risk due to moderate idiopathic Parkinsons and a total lack of awareness that he is at risk, plus his habit of resisting assistance, pushing carers away and so on. One of the things I have learned is that "Behaviour that Challenges" isn't just about aggression (which is what I always believed) but is any behaviour that makes that domain more complex to manage and that might need specialist/skilled intervention to resolve.

So really important to be aware of the 12 domains in the CHC checklist, and to really think about how one might impact on another. We were very lucky as our CHC assessor had already done this (done her job properly) but had she not, we would have been able to make sure that the area was covered correctly.

That's wonderful new Sonia !

 

[Ruth32]

Thanks Tony .... I do worry about the 3 month review because so much will depend on the quality of logs by the new Nursing home, so will be checking notes regularly. Yes, I see how challenging behaviour could diminish as things progress, Dad may become more passive as he becomes more frail and the 1:1 need could in principle decrease. However he is physically walking quite well at the moment with the 1:1 support which, regardless of funding, makes us happier because it allows him at least a bit of afeeling of being alive! Although cognitively he seems oblivious to objects or people in his path and to things like whether a door is open or closed! And if carer steps back, he immediately wavers and becomes wobbly and disoriented, then agitated.

@Sonya1

I had mums 3 month full assessment on Monday. The one thing I will say is make sure the care home, makes clear, accurate, precise notes often. For me, I had the care home nurse, the assessor who had already mentioned she wanted to take mum down from high to moderate in four domains and yes unbelievably a SS worker arrived even though they said they wouldn't and I must admit she was a great help, but she was extremely frustrated with the care home.

Outcome is mum moved from no needs to moderate in breathing, remained at high in mobility as the SS agreed with me that she was marked at high risk of falls, but did question why they didn't keep her strapped into a chair ? Communication the SS agreed mum should be kept at high but the assessor disagreed because the care home notes said good ability to communicate ? So that was left undecided.
P&E both Assessor and SS wanted to move mum down to Moderate. Their argument was that although mum has withdrawn from any attempts to engage in planning, support, daily activities, this would fall under cognition. I did question that a lot of the domains overlap each other, but the assessor wouldn't have it and she will refer to the care home notes.
Behaviour the SS agreed she should remain at high, but the assessor disagreed, again because of the care home notes.

The care home nurse explained that there is actually a language problem, as for most of their staff, English isn't their first language, including hers and saying " has good ability to communicate" means mum shouts out alot, but does not mean she understands or makes sense. The meeting was 2 1/2 hours long !

So as it stands, I haven't a clue which way it will go, I did ask if she will notify me what her recommendation will be, which is what happened in the first assessment and she said no, that they don't do that anymore and her report will have to go through quality control ? (I have never heard of this) then onto the board and they will notify me in 1-2 weeks what the outcome is.

My brother and I have agreed that we will appeal it if it is declined, because mum has not got any better since the last report, but actually worse in a few domains and as the assessor saw mum for literally 2 minutes if that, and the SS didn't see mum at all, it really seems quite unfair that they are going on notes that the care home have themselves said are wrong.

So to round up, yes care homes notes in my mums situation seems to be the reckoning on whether it will get declined or not.

 

[Sonya1]

@Sonya1

I had mums 3 month full assessment on Monday. The one thing I will say is make sure the care home, makes clear, accurate, precise notes often. For me, I had the care home nurse, the assessor who had already mentioned she wanted to take mum down from high to moderate in four domains and yes unbelievably a SS worker arrived even though they said they wouldn't and I must admit she was a great help, but she was extremely frustrated with the care home.

Outcome is mum moved from no needs to moderate in breathing, remained at high in mobility as the SS agreed with me that she was marked at high risk of falls, but did question why they didn't keep her strapped into a chair ? Communication the SS agreed mum should be kept at high but the assessor disagreed because the care home notes said good ability to communicate ? So that was left undecided.
P&E both Assessor and SS wanted to move mum down to Moderate. Their argument was that although mum has withdrawn from any attempts to engage in planning, support, daily activities, this would fall under cognition. I did question that a lot of the domains overlap each other, but the assessor wouldn't have it and she will refer to the care home notes.
Behaviour the SS agreed she should remain at high, but the assessor disagreed, again because of the care home notes.

The care home nurse explained that there is actually a language problem, as for most of their staff, English isn't their first language, including hers and saying " has good ability to communicate" means mum shouts out alot, but does not mean she understands or makes sense. The meeting was 2 1/2 hours long !

So as it stands, I haven't a clue which way it will go, I did ask if she will notify me what her recommendation will be, which is what happened in the first assessment and she said no, that they don't do that anymore and her report will have to go through quality control ? (I have never heard of this) then onto the board and they will notify me in 1-2 weeks what the outcome is.

My brother and I have agreed that we will appeal it if it is declined, because mum has not got any better since the last report, but actually worse in a few domains and as the assessor saw mum for literally 2 minutes if that, and the SS didn't see mum at all, it really seems quite unfair that they are going on notes that the care home have themselves said are wrong.

So to round up, yes care homes notes in my mums situation seems to be the reckoning on whether it will get declined or not.

All fingers well and truly crossed for you Ruth32! Yep, the nursing home/care home logs are so vital! The issue about many staff being non english speaking or only moderate - I often think about how this impacts on those with dementias. If hearing may already be compromised, and if dementia means receptive language skills are impaired, then it really is going to have an effect if carers and staff can't be easily understood. I have to say here that the care in Dad's d2a placement has been exemplary, with carers speaking English as a second language going the extra mile to be accurate, concise and at just the right volume. I can't praise them enough. Likewise if residents are not using English as a first language and carers are English speaking, the same issues could affect quality of communication. I really hope you won't need to appeal, but if you do, it seems there are many people here that are more than able to help, advise and support you!

 

[LJC10]

Hi everyone,

My Mil is in the late stages of dementia/vascular Alzheimer’s. She has been in a carehome since 2018 after recommendations from a social worker that it is not safe for her to return home.

She had a CHC assessment and they covered the cost of nursing care. She moved homes in 2021 and this was stopped because they felt as if it wasn’t required anymore. my MIL health has deteriorated rapidly she is no longer able to communicate she will say a few words but It’s mainly just sounds she doesn’t use gesture either. She has numerous falls as she is unsteady on her feet. And is double incontinent she eats and drinks but only if food is put into her mouth and drinks when the cup is held to her mouth.

I have been emailing her carehome now for a few weeks requesting a CHC assessment again and they are just ignoring me. I have been in to see them and everytime they say you need to speak to the manager and she isn’t here she’s on holiday or it’s a day she’s not working.

Is there anywhere else I can go to request this. I have looked at a law firm that specialises but I wanted to try myself first without the finacial costs.

I’m not expecting her to get the CHC because I know it’s impossible. But I want to at least give it a go in applying

Thanks you in advance for any support received

 

[Sonya1]

Hi everyone,

My Mil is in the late stages of dementia/vascular Alzheimer’s. She has been in a carehome since 2018 after recommendations from a social worker that it is not safe for her to return home.

She had a CHC assessment and they covered the cost of nursing care. She moved homes in 2021 and this was stopped because they felt as if it wasn’t required anymore. my MIL health has deteriorated rapidly she is no longer able to communicate she will say a few words but It’s mainly just sounds she doesn’t use gesture either. She has numerous falls as she is unsteady on her feet. And is double incontinent she eats and drinks but only if food is put into her mouth and drinks when the cup is held to her mouth.

I have been emailing her carehome now for a few weeks requesting a CHC assessment again and they are just ignoring me. I have been in to see them and everytime they say you need to speak to the manager and she isn’t here she’s on holiday or it’s a day she’s not working.

Is there anywhere else I can go to request this. I have looked at a law firm that specialises but I wanted to try myself first without the finacial costs.

I’m not expecting her to get the CHC because I know it’s impossible. But I want to at least give it a go in applying

Thanks you in advance for any support received

A lot seems to depend upon the quality and accuracy of the records kept by the home so I would definitely check that all falls etc are logged, all challenges in fact. Use email to discuss concerns where possible then you have an evidence trail. Does your Mum still have a social worker? Maybe they can instigate a CHC checklist? Hopefully someone else can give you better advice than me! Then, if you have evidence of incidents and difficulties, I'm pretty sure that will give you a better chance of success

 

[Louise7]

Hello @LJC10 The care home should be able to request a CHC Checklist but if you are having trouble getting the manager to do this a social worker could arrange this too if your MIL has one? Alternatively you could try contacting the CHC team at the Integrated Care Board (ICB) which covers the area that your MIL lives in directly. They may have their own local process for completion of checklists so would be able to let you know how this works and who to contact.

CHC isn't impossible to get but it can be very difficult, and it helps if the care home support the application with good records. You mention that your MIL has previously had Funded Nursing Care (FNC) withdrawn, is she in a nursing home at the moment? If so, and the checklist is positive and a full CHC assessment takes place, she may qualify for FNC if she has nursing needs. It's a good idea to read through the other posts here, in addition to the CHC National Framework, to help to prepare for the assessment. Hope this helps, and good luck!

 

[Dave63]

Hi @LJC10
Good bit of info regarding getting the CHC assessment process started in this article:

Getting the NHS Continuing Healthcare assessment process started

Confused about Continuing Healthcare and how the assessment process works? We look here at getting the NHS Continuing Healthcare assessment process started.

caretobedifferent.co.uk

Important point made in the article:

The local authority (e.g. a social worker) has a legal duty under the Care Act 2014 to refer a person for a Continuing Healthcare assessment if there is even a small chance the person may be eligible.

 

[luggy]

Hi everyone,

My Mil is in the late stages of dementia/vascular Alzheimer’s. She has been in a carehome since 2018 after recommendations from a social worker that it is not safe for her to return home.

She had a CHC assessment and they covered the cost of nursing care. She moved homes in 2021 and this was stopped because they felt as if it wasn’t required anymore. my MIL health has deteriorated rapidly she is no longer able to communicate she will say a few words but It’s mainly just sounds she doesn’t use gesture either. She has numerous falls as she is unsteady on her feet. And is double incontinent she eats and drinks but only if food is put into her mouth and drinks when the cup is held to her mouth.

I have been emailing her carehome now for a few weeks requesting a CHC assessment again and they are just ignoring me. I have been in to see them and everytime they say you need to speak to the manager and she isn’t here she’s on holiday or it’s a day she’s not working.

Is there anywhere else I can go to request this. I have looked at a law firm that specialises but I wanted to try myself first without the finacial costs.

I’m not expecting her to get the CHC because I know it’s impossible. But I want to at least give it a go in applying

Thanks you in advance for any support received

Hi. I wouldn't rely on the care home arranging for the CHC assessment. Whilst I'm sure some care homes are very helpful with this, I have not found this to be the case. I would suggest that you find out which ICB (formerly known as CCG) covers your MIL's area, and contact them yourself to request an assessment. That's what I had to do.

 

[LJC10]

Hello @LJC10 The care home should be able to request a CHC Checklist but if you are having trouble getting the manager to do this a social worker could arrange this too if your MIL has one? Alternatively you could try contacting the CHC team at the Integrated Care Board (ICB) which covers the area that your MIL lives in directly. They may have their own local process for completion of checklists so would be able to let you know how this works and who to contact.

CHC isn't impossible to get but it can be very difficult, and it helps if the care home support the application with good records. You mention that your MIL has previously had Funded Nursing Care (FNC) withdrawn, is she in a nursing home at the moment? If so, and the checklist is positive and a full CHC assessment takes place, she may qualify for FNC if she has nursing needs. It's a good idea to read through the other posts here, in addition to the CHC National Framework, to help to prepare for the assessment. Hope this helps, and good luck!

Thank you for your reply,

Yeah she’s in a nursing home currently, she moved between two. We was told it’s been stoped because the LA had started to pay the fees until me and my husband had sold her house and then we pay them back. Thank you for all the information I will have a read of it all!

 

[luggy]

Hi. I've previously mentioned in this thread that I'm intending to appeal the ICB's ineligibility decision on mum's last DST on 12th January. I've been applying for mum's health records which are slowly being sent to me.

My first question is - can I apply to the ICB for any documents/records they may have in relation to them reaching their decision, such as a decision making document?

As a result of applying for health records, I have received records for a 5 week admission to hospital for mum after she had a fall and broke her hip in March 2021. The fall came about as a result of her long standing agitated behaviour issue which manifested itself as incessant pacing, amongst other things. On reading the recently received records, I have only just learned that, during her stay in hospital, mum was placed on 'Enhanced Supervision' Level Purple - the highest level i.e. 1:1 supervision. It appears that mum remained on this level of supervision for the entire duration of her 5 week admission with Enhanced Supervision Charts describing mum as violent to staff, refusing meds, observations and care, shouting, screaming, crying and unresponsive to reassurance. Towards the end of her hospital stay, mum was assessed by a CHC Nurse Assessor as part of the discharge process. It appears to have been carried out over the phone. The 12 domains were addressed and the Behaviour domain was seriously underplayed describing mum as having 'very occasional episodes of physical aggression.......which do not occur on a daily basis.....and is documented as having long periods of being settled'. Again, I was unaware that this assessment had taken place. A few days after this assessment, mum was discharged to a nursing home as a self funder. The last entry on her Enhanced Supervision Chart, on the day of discharge, states 'has been shouting since we came on shift. Unable to settle her with anything......continues to slap, shout, scream despite all attempts to settle her'

I had no idea that any of this was going on at the time. I was unable to visit mum due to Covid restrictions, but I did phone the ward daily for an update and was told mum was fine.

A few weeks later, at the nursing home, mum had her first DST and was found to be ineligible, despite the fact that she was still manifesting the aforementioned behaviours. Unfortunately, I was unable to appeal because my dad became seriously ill and was admitted to hospital before being discharged to the same nursing home as mum, and then he passed away. Then we had to sell his house to pay for mum's care. It was a tough time.

My second question is - I have lost the opportunity to appeal the outcome of mum's first DST, but can any of the aforementioned information be used to assist me with my current appeal? Or are there grounds for a complaint instead? Any advice, suggestions or thoughts would be much appreciated.

Thank you.

 

[Dave63]

Hi. I've previously mentioned in this thread that I'm intending to appeal the ICB's ineligibility decision on mum's last DST on 12th January. I've been applying for mum's health records which are slowly being sent to me.

My first question is - can I apply to the ICB for any documents/records they may have in relation to them reaching their decision, such as a decision making document?

Hi @luggy

Yes, you can.
The reasons for making any eligibility decision should be made clear on their copy of the DST which they should include with the outcome letter they sent to you.

Paragraph 43 of the DST states:
A copy of the completed DST (including the recommendation) should be forwarded to the individual (or, where appropriate, their representative) together with the final decision made by the ICB, along with the reasons for this decision. If someone is acting as the individual's representative, they are entitled to receive a copy of the DST provided that the correct basis for sharing such information has been established. This basis could be any one of the following:

a) consent from the individual concerned (where they have capacity to give this).
b) a 'best interests' decision made by a court appointed deputy (health and welfare) or someone who holds Lasting Power of Attorney (health and welfare) for that individual.
c) a "best interests" decision to share information made under the Mental Capacity Act (where the individual lacks capacity to consent to the sharing of information).

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1112481/NHS-continuing-healthcare-decision-support-tool-guidance-2022.pdf

Our mums outcome letter, nor the DST, gave any reason for why the assessors recommendation of eligible was overturned by the ratification panel. When I requested this information I was told the reasons would be given at appeal. I was flabbergasted, how is someone supposed to make an effective appeal if they are not being told what it is they are appealing? We now have solicitors dealing with the appeal.

 

[luggy]

Hi @luggy

Yes, you can.
The reasons for making any eligibility decision should be made clear on their copy of the DST which they should include with the outcome letter they sent to you.

Paragraph 43 of the DST states:
A copy of the completed DST (including the recommendation) should be forwarded to the individual (or, where appropriate, their representative) together with the final decision made by the ICB, along with the reasons for this decision. If someone is acting as the individual's representative, they are entitled to receive a copy of the DST provided that the correct basis for sharing such information has been established. This basis could be any one of the following:

a) consent from the individual concerned (where they have capacity to give this).
b) a 'best interests' decision made by a court appointed deputy (health and welfare) or someone who holds Lasting Power of Attorney (health and welfare) for that individual.
c) a "best interests" decision to share information made under the Mental Capacity Act (where the individual lacks capacity to consent to the sharing of information).

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1112481/NHS-continuing-healthcare-decision-support-tool-guidance-2022.pdf

Our mums outcome letter, nor the DST, gave any reason for why the assessors recommendation of eligible was overturned by the ratification panel. When I requested this information I was told the reasons would be given at appeal. I was flabbergasted, how is someone supposed to make an effective appeal if they are not being told what it is they are appealing? We now have solicitors dealing with the appeal.

Thanks Dave 63. I have been sent a copy of mum's DST and the outcome letter. There isn't much detail as to why funding has been declined. The records I'm looking to obtain are those that we don't normally get to see. Good luck with your appeal.

 

[Brizzle]

My second question is - I have lost the opportunity to appeal the outcome of mum's first DST, but can any of the aforementioned information be used to assist me with my current appeal? Or are there grounds for a complaint instead? Any advice, suggestions or thoughts would be much appreciated.

Hi luggy,

Had my mums negative CHC decision not been overturned at the eleventh hour I was about to go on a two thronged appeal and complaint procedure against the CCG. It was important for me to get justice and the CHC mum rightly needed and deserved but it was equally important for me to bring the assessors to some kind of accountability for their decisions which on quite a few occasions had “flown in the face “ of what was expected and required by the National Framework.

If you do decide to make a complaint as well as an appeal about what you consider to be incorrect or unfair procedure then gather as much evidence about your mums most recent DST meeting as possible and then back it up with any detrimental evidence fom your mums first DST in 2021. This will show what appears to be a pattern of rather concerning inconsistency’s in how your local CCG is interpreting the NF both in the present and historically.

Here is the Gov link regarding NHS complaints:-

NHS Constitution for England

The principles and values of the NHS in England, and information on how to make a complaint about NHS services.

www.gov.uk

Note you normally only have up to one year to complain but in your case you will be able to link the two DST’s despite the time lapse due to only recently becoming aware of what went on.

The following clause in contained within the link above :-

You should make your complaint within 12 months of the incident, or within 12 months of the matter coming to your attention.This time limit can sometimes be extended as long as it is still possible to investigate your complaint.

Although your appeal will have to be 100% concerning the most recent DST I do not think it would do any harm to casually mention that with newly acquired information you now have grave concerns about procedure at the first DST also. If the CCG justifiably need to be put in a bad light in front of the appeals panel then so be it.

Good luck what ever you decide!

 

[luggy]

Hi luggy,

Had my mums negative CHC decision not been overturned at the eleventh hour I was about to go on a two thronged appeal and complaint procedure against the CCG. It was important for me to get justice and the CHC mum rightly needed and deserved but it was equally important for me to bring the assessors to some kind of accountability for their decisions which on quite a few occasions had “flown in the face “ of what was expected and required by the National Framework.

If you do decide to make a complaint as well as an appeal about what you consider to be incorrect or unfair procedure then gather as much evidence about your mums most recent DST meeting as possible and then back it up with any detrimental evidence fom your mums first DST in 2021. This will show what appears to be a pattern of rather concerning inconsistency’s in how your local CCG is interpreting the NF both in the present and historically.

Here is the Gov link regarding NHS complaints:-

NHS Constitution for England

The principles and values of the NHS in England, and information on how to make a complaint about NHS services.

www.gov.uk

Note you normally only have up to one year to complain but in your case you will be able to link the two DST’s despite the time lapse due to only recently becoming aware of what went on.

The following clause in contained within the link above :-

You should make your complaint within 12 months of the incident, or within 12 months of the matter coming to your attention.This time limit can sometimes be extended as long as it is still possible to investigate your complaint.

Although your appeal will have to be 100% concerning the most recent DST I do not think it would do any harm to casually mention that with newly acquired information you now have grave concerns about procedure at the first DST also. If the CCG justifiably need to be put in a bad light in front of the appeals panel then so be it.

Good luck what ever you decide!

Hi Brizzle. Thank you so much for that, it's extremely helpful. It seems like such a minefield at the moment, but little snippets of advice such as this are helping me to see my way through the fog.

 

[Ruth32]

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