Continuing Healthcare Assessment

[CarolC]

Hi All

I am at present trying to collate as much evidence as I can to take with me to my Mum's assessment on the 30th April.

My Mum was refused CHC last year but was granted the Nursing element towards her NH fees, which she was being discharged to from hospital after falling and breaking her hip.

My Mum is in the advanced stages of Alzheimer's she is immobile and requires 2 people and a standing hoist to move her from bed to wheel chair then wheel chair to comfy chair.

Mum has poor skin integrity has a special mattress and seat pads and creams applied throughout the day to combat this.

Mum is doubly incontinent.

On talking to the nurse assessors I have been told that it is highly unlikely that Mum will receive CHC funding as her needs are not a primary health need but a social services need however they are still going ahead with the assessment with a SW a Nurse assessor and a nurse from my Mum's home and myself and any other family member who may like to attend.

Can anybody please help as I have read so much on line I have read the National Framework I have had a look at the Support Tool and I have read articles of people who have been successful in winning CHC funding. But I am still at a loss of what to say to prove my Mum's needs are primarily health needs, when Talking to the nurse assessors I said they should be assessing my Mum's needs and not how these needs are being met they said that the assessment would be carried out "in the here and now" which I thought was not what the framework set out. They asked me exactly what did I think in my Mum's case constituted a health need I answered everything and she replied that my Mum did require a bit of nursing input but the majority of care is by a carer not a nurse. This was all discussed at a meeting to review whether my Mum qualified for a full assessment. I have asked if I could have a copy of the checklist they completed at this meeting but they said it wasn't a checklist as a checklist is only completed by someone making a referral, to be honest I am completely confused.

I am not in a position at the moment to seek help from the Voluntary group on the Alzheimers web as I am not yet at the appeal stage although I do feel that is where I am heading.

Any help or advice would be greatly appreciated.

Thanks Carol

 

[lin1]

Hello CarolC
Just giving your post a bump to the top as I know hardly anything about CHC,
I also felt I could not read and run.

The little I know about CHC is as you have already said, The assessment should be on the persons needs.
One thing I have read on here many many times regarding claiming for CHC is, a managed need , is still a need.

Personally I would contact the Alzheimer's Society now , rather than wait, IMO the more guns (knowledge) you have at your side , the better.

I am wishing you luck that your claim for CHC funding is successful, without you having to go to appeal.

Others ,who are far more knowledgeable than me ! ,will be along later today, so keep checking back here.

Please let us know how you get on

 

[CarolC]

Thanks Lin really appreciate it

 

[LYN T]

My Husband was awarded CHC last December. We argued the 'complexity', 'intensity' and 'unpredictability' angle. Your Mum should be assessed on the NH's notes for the last three months-at least that was what I was told, but as there doesn't appear to be any uniformity others have probably been told differently.

Good luck

Lyn T

 

[CarolC]

Hi Lin did you seek professional help or did you do it yourself
Carol


Sent from my iPad using Talking Point

 

[lin1]

Giving another bump

 

[LYN T]

Hi Lin did you seek professional help or did you do it yourself
Carol

Sent from my iPad using Talking Point

Pete was assessed on the very comprehensive records the CH kept. In addition the chair of the CHC was a very fair chap who gave pointers to assist.For example he asked for a falls assessment to be done as Pete's walking was so bad.In Pete's case it was his behaviour/aggression/agitation which got him the CHC. As well as advanced AD he also suffers with Bipolar1 with mixed episodes/asthma/copd/skin problems.

Have you seen your Mum's records at the Nursing Home? Make notes of anything-date/time etc.By the way my Husband is in a CH so all of his care is done by Carers-not Nurses.

Good luck and take care

Lyn T

 

[Pigeon11]

Hi CarolC

I have been meaning to reply to your post for a few days but been really busy - sorry about that. My dad seems to be at a similar stage to your Mum. He had his CHC reviewed in 2012 and it was withdrawn. I appealed successfully and it was reinstated last year and is due to be reviewed again in July this year

Just a few points to note, hoping it helps:

- It doesn't matter who provides the care. Most of my dad's is provided by support workers, presumably as it's far too expensive to have a registered nurse to attend to his every need. Some people provide the care themselves at home and still get CHC. I think it explains this in the DST guidance notes.

- When they assessed his needs at the review, they looked back over the last few months to see what problems he had up to the date of the assessment. So 'here and now' is not strictly true as how could they form a view about the complexity and intensity of their needs by just looking at a snapshot?

- My dad's continence needs were the same as your mum's. But he has regular pressure sores and although they have not gone beyond grade 2, it is the amount of effort needed to prevent them going any further that seemed to count as well as the number of time he experiences them (ie 'intensity' of the need). He has an airflow mattress, gel dressings, 2 hourly turns and special barrier creams but this doesn't prevent them. They also took into account that he is unable to sit in a chair for longer than half an hour per day as this causes more sores. So he stays bedbound in his room and because he is so isolated, it is likely he is depressed. This is where the 'complexity' of his needs starts to be taken into account because a problem in some domains (continence and immobility) causes an effect in others (skin integrity and psychological/emotional)


- Give very careful thought to what care she gets and to what her actual healthcare needs are. It's very easy for CH staff to over-simplify the care they give as they are used to it. Or, they don't actually provide all the care they should due to negligence or lack of resources. So, for example, my dad should have a special frame to lift bedding from his feet and wear inflatable boots as his circulation is poor and anything rubbing on his feet causes his skin to break down. Often they don't bother with this as they forget but they should and it does demonstrate a healthcare need.

- The assessment is 'evidence based' and the MDT will rely on written records to provide the evidence. If the CH don't keep good records, the evidence won't be there even though the need is. I have been making my own notes at each visit to make sure I can challenge anything that is played down due to lack of written evidence. Make sure that your mum's nurse/care workers are present at the meeting and make sure you challenge anything they underplay. I don't think they mean to do this, but like I said, they do oversimplify things because they are used to the situation and are inclined to say care is no trouble or straightforward when the reality is anything but this. They also play things down as I think they are a little concerned about being criticised if someone's health is deteriorating

- Make sure the local authority social worker is present at the meeting. At the first meeting where dad's funding was withdrawn, no one was present. At the review, they did attend and I was struck by how supportive of dad's case they were. It occurred to me that they are trying to protect the interests of the LA (as they may need to fund care if CHC isn't awarded) and so it is their best interests to be on your side.

- If at first you don't succeed, appeal!

I'm sure I will think of other things as I remember them but hope this is useful to be going on with. Let me know if you think I can do anything more to help.

It's a tiring, distressing and unfair process, but keep your nerve and don't let anyone put you off. Remember that in principle it is just wrong that dementia sufferers have to pay for their care, It's a terminal medical condition that has a devastating effect on people's lives.

Take care

xx

PS I forgot to say that I didn't have any professional help. I have to say that the nurse assessor who did the appeal was far more sympathetic, thorough and interested in getting things right than the one who did the original review - who didn't listen to a word I said, couldn't care less and seemed intent on making sure funding wasn't awarded. If you sense any sign of a bad attitude from them you should complain.

 

[CarolC]

Thanks Pigeon11
That's really helpful

I'm waiting for the assessment that was done from CHC team and assessment from mental health team.

I will see what they say and get back to you if I need some help.

I have been looking at a website called Care to be different run by a lady whose parents were refused CHC and she successfully appealed, they do charge for their help but I am thinking of maybe contacting them as well do you know anyone who has used their services.

Thanks again Carol

 

[cf1611]

Hi I'm new to this and not very computer savvy. My mother has dementia and has been a nursing home for past 18 months whilst I have been fighting to get CHC funding. she has been awarded funded nursing care but has been turned down for chc and I'm preparing for an appeal. My problem is that I find the nursing home somewhat obstructive. I did not agree with the statements they made about my mothers needs they seem to play them down. They have also refused my requested to see her daily notes as I only have power of attorney over property and finance and not health and well being. Can anyone please offer any advice on this?

 

[dottyd]

My aunt was in a care home for about 4.5 years. Last feb she broke her hip.

I thought she should have chc as she never walked after that.

Anyway in sept last year she was rushed to hospital with constant diarrhoea.

Turned out she had cancer.

She was refused again for chc, despite the fact she was obviously dying. Wasn't feeding herself and barely drinking.

She passed away after 5 weeks in hospital although they were trying to ship her out to a nursing home

It was an awful distressing business and I'm going to get them to look at why chc was refused a second time.

It's so wrong.

 

[EveH]

It can be done

Hi All

I am at present trying to collate as much evidence as I can to take with me to my Mum's assessment on the 30th April.

My Mum was refused CHC last year but was granted the Nursing element towards her NH fees, which she was being discharged to from hospital after falling and breaking her hip.

My Mum is in the advanced stages of Alzheimer's she is immobile and requires 2 people and a standing hoist to move her from bed to wheel chair then wheel chair to comfy chair.

Mum has poor skin integrity has a special mattress and seat pads and creams applied throughout the day to combat this.

Mum is doubly incontinent.

On talking to the nurse assessors I have been told that it is highly unlikely that Mum will receive CHC funding as her needs are not a primary health need but a social services need however they are still going ahead with the assessment with a SW a Nurse assessor and a nurse from my Mum's home and myself and any other family member who may like to attend.

Can anybody please help as I have read so much on line I have read the National Framework I have had a look at the Support Tool and I have read articles of people who have been successful in winning CHC funding. But I am still at a loss of what to say to prove my Mum's needs are primarily health needs, when Talking to the nurse assessors I said they should be assessing my Mum's needs and not how these needs are being met they said that the assessment would be carried out "in the here and now" which I thought was not what the framework set out. They asked me exactly what did I think in my Mum's case constituted a health need I answered everything and she replied that my Mum did require a bit of nursing input but the majority of care is by a carer not a nurse. This was all discussed at a meeting to review whether my Mum qualified for a full assessment. I have asked if I could have a copy of the checklist they completed at this meeting but they said it wasn't a checklist as a checklist is only completed by someone making a referral, to be honest I am completely confused.

I am not in a position at the moment to seek help from the Voluntary group on the Alzheimers web as I am not yet at the appeal stage although I do feel that is where I am heading.

Any help or advice would be greatly appreciated.

Thanks Carol

Hi Carol
Sorry to hear about your mum's condition and the problems you're having with regard to CHC. I'm assuming that her assessment did take place at the end of April, and that she was turned down. I think you can be sure of two things: the first is that your mum does indeed warrant CHC according to the law. The second is that if you do choose to pursue it, you face the most tremendous uphill battle.
I recently managed to secure CHC for my father. He's a stroke survivor, immobile and incontinent like your mum. He has vascular dementia and his grasp on reality is slight. He's also extremely deaf and has a chronic wound that needs constant monitoring and more or less dictates from day to day whether he will be got up, and for how long. He spent three months in hospital in the summer of 2012, was then discharged into a nursing home and has been there ever since. It has taken me all that time to get justice for him, and even now the battle is far from over (more about that below.)
By the time he was granted CHC, he had been assessed (counting Checklists and DSTs separately) eleven times. In December last year, he was granted it (in retrospect) for the period from September onwards, and then in January this year he was granted it (again in retrospect) from the previous January up until the end of August. In other words, he's now been deemed 'eligible' for the whole of last year.
My worst horror story about the behaviour of CHC assessors is this. In January 2013 (when it was time for his 'three month review' after entering the home) a particular assessing nurse, acting on her own and not having informed me or invited me to be present, sneaked in and applied the Checklist. I only learned about this afterwards, when she phoned me to tell me he 'didn't even trigger for a full assessment.' She had scored him one High, three Moderates and six Lows. Despite my protests, they at that stage refused to repeat the assessment, and that could have been the end of the matter. If it hadn't been for further developments - his developing a wound, and my demanding as a result that they assess him again - that sneaky, inaccurate assessment could have meant him paying for his care for ever after.
Cutting a long story short, he has since been reassessed for the very same period, i.e. January 2013 onwards. The two people who assessed him that time concluded that, even back then, he should have scored six Highs, four Moderates and no Lows. Result: a primary health need.
No Lows. Yet the nurse who'd 'reviewed' him previously had given him six Lows! I think we can see from this that the scores are pretty subjective and it's a travesty that they are used to determine a person's financial fate.
So he is currently receiving CHC. But it isn't for the full amount of his care package, as the nursing home costs more than the NHS is prepared to pay. He therefore still pays about a third himself. They don't call it a top up but a 'hospitality agreement', but a top up is what it is. However, the worst thing about all this is that in just over a week's time we have to go through the assessment ordeal yet again, when they again carry out a review of his needs. I have no doubt the two assessing nurses in question will be very much on the lookout for any excuse to take the funding away, on the pretext that his needs have somehow reduced. They haven't, of course, but that won't necessarily stop them.
I know that I have to fight them all over again. If I lose, we'll be back to square one. But if I succeed, he should be left alone by the assessors for another year, and that would be great!
My best advice to you, if you decide to fight on, is as follows. First of all, don't just accept what you are told, because it may well be wrong. Check and double check that what they are telling you is accurate. Secondly, go through the Checklist and DST documents yourself before the assessment, and don't just score her needs yourself but type out every point you can think of to back up your case. Wherever you can, cite evidence in the form of snippets from your mum's care notes. Thirdly, don't expect assessors to be knowledgeable about the law with regard to CHC because most of them aren't, and don't expect them to care what the law says either, because most of them don't. They are only interested in carrying out their job, which, as they see it, is to apply these criteria to your mother to see if she comes out 'eligible'. It is therefore up to you to play them at their own game, and at least ensure that the scores they award her are accurate and fair. Fourthly, try your hardest to get her a Severe score in the Cognition domain as, in practice, a number of Highs and/or Moderates are not usually considered sufficient, despite what the DST guidance notes say.
I really do wish you all the luck in the world. You are going to need it. But it can be done.
EveH

 

[cf1611]

Hi Carol
Sorry to hear about your mum's condition and the problems you're having with regard to CHC. I'm assuming that her assessment did take place at the end of April, and that she was turned down. I think you can be sure of two things: the first is that your mum does indeed warrant CHC according to the law. The second is that if you do choose to pursue it, you face the most tremendous uphill battle.
I recently managed to secure CHC for my father. He's a stroke survivor, immobile and incontinent like your mum. He has vascular dementia and his grasp on reality is slight. He's also extremely deaf and has a chronic wound that needs constant monitoring and more or less dictates from day to day whether he will be got up, and for how long. He spent three months in hospital in the summer of 2012, was then discharged into a nursing home and has been there ever since. It has taken me all that time to get justice for him, and even now the battle is far from over (more about that below.)
By the time he was granted CHC, he had been assessed (counting Checklists and DSTs separately) eleven times. In December last year, he was granted it (in retrospect) for the period from September
onwards, and then in January this year he was granted it (again in retrospect) from the previous January up until the end of August. In other words, he's now been deemed 'eligible' for the whole of last year.
My worst horror story about the behaviour of CHC assessors is this. In January 2013 (when it was time for his 'three month review' after entering the home) a particular assessing nurse, acting on her own and not having informed me or invited me to be present, sneaked in and applied the Checklist. I only learned about this afterwards, when she phoned me to tell me he 'didn't even trigger for a full assessment.' She had scored him one High, three Moderates and six Lows. Despite my protests, they at that stage refused to repeat the assessment, and that could have been the end of the matter. If it hadn't been for further developments - his developing a wound, and my demanding as a result that they assess him again - that sneaky, inaccurate assessment could have meant him paying for his care for ever after.
Cutting a long story short, he has since been reassessed for the very same period, i.e. January 2013 onwards. The two people who assessed him that time concluded that, even back then, he should have scored six Highs, four Moderates and no Lows. Result: a primary health need.
No Lows. Yet the nurse who'd 'reviewed' him previously had given him six Lows! I think we can see from this that the scores are pretty subjective and it's a travesty that they are used to determine a person's financial fate.
So he is currently receiving CHC. But it isn't for the full amount of his care package, as the nursing home costs more than the NHS is prepared to pay. He therefore still pays about a third himself. They don't call it a top up but a 'hospitality agreement', but a top up is what it is. However, the worst thing about all this is that in just over a week's time we have to go through the assessment ordeal yet again, when they again carry out a review of his needs. I have no doubt the two assessing nurses in question will be very much on the lookout for any excuse to take the funding away, on the pretext that his needs have somehow reduced. They haven't, of course, but that won't necessarily stop them.
I know that I have to fight them all over again. If I lose, we'll be back to square one. But if I succeed, he should be left alone by the assessors for another year, and that would be great!
My best advice to you, if you decide to fight on, is as follows. First of all, don't just accept what you are told, because it may well be wrong. Check and double check that what they are telling you is accurate. Secondly, go through the Checklist and DST documents yourself before the assessment, and don't just score her needs yourself but type out every point you can think of to back up your case. Wherever you can, cite evidence in the form of snippets from your mum's care notes. Thirdly, don't expect assessors to be knowledgeable about the law with regard to CHC because most of them aren't, and don't expect them to care what the law says either, because most of them don't. They are only interested in carrying out their job, which, as they see it, is to apply these criteria to your mother to see if she comes out 'eligible'. It is therefore up to you to play them at their own game, and at least ensure that the scores they award her are accurate and fair. Fourthly, try your hardest to get her a Severe score in the Cognition domain as, in practice, a number of Highs and/or Moderates are not usually considered sufficient, despite what the DST guidance notes say.
I really do wish you all the luck in the world. You are going to need it. But it can be done.
EveH

I have been struggling for 18 months to get CHC for my mother, she has vascular dementia, chronic osteo arthritis, osteoporosis with a curvature of the spine. She has an unsafe swallow requires a puréed diet and custard consistency fluid. If she is in bed she has to be fed, athough if she sits properly at a table she can manage with a spoon.She regularly aspirates and has had several bouts of pnuemonia. She is unable to pass urine and has a permant indwelling catheter, which causes problems, it frequently blocks or is expelled with the balloon inflated. She gets repeated UTI's and thrush as a result of antbiotics, she also suffers from severe constipation.Her skin is fragile and she needs cream appling daily, she has had pressure which have now healed, but needs regular changes of position day and night. She is completely immobile and requires a hoist and two people for all movements. She has suffered from anxiety and depression almost all of her life and has been hospitalised under a section 3 on several occasions she remains on antidepressants and antipsychotic drugs. Her cognition has been scored as severe she is unable to assess basic risks. She has had three assessments by three different assessors, they all scored the domains differently, her highest score was 1 severe 2 highs 4 moderate 3 low 1 no needs. She was awarded FNC but I was told by the nurse assessor that she was a million miles away from being awarded CHC. All the evidence I offered was considered to be irrelevant or merely anecdotal. I fail to see how her needs are not primarily health needs. I'm feeling so frustrated and exhausted with it all. Am I wasting my time and effort?

 

[Not so Rosy]

Sorry if I am already saying what everyone already knows

You need to hit one Priority level to get CHC

This is only achievable in the Behaviour, Breathing, Drug therapies and Medication or Altered States of Consciousness Domains

or you need to hit two Severe needs which are achievable in the Behaviour, Cognition, Mobility, Nutrition, Skin, Breathing, Drug Therapies or Other significant care needs.

Sorry if it sounds like trying to hit the Golden Button on Britains Got Talent but that is bizarrely what it seems like to me.