Wirralson;1004990 Your district nurse is talking out of a part of her anatomy not mentioned in polite company. What she has said is sufficiently inaccurate to justify a formal complaint to her employer and her professional body (usually RCN). I would be sufficiently concerned in your position to make a complaint at once and to have her removed from anything to do with your mother's case. Giving such inaccurate information is a serious breach of her duties said:My Husband's SW told me that Pete wouldn't get CHC funding -I complained to the local head of SS's as the SW should have been neutral.
I think the DN is being very unprofessional Florriep. Start as you mean/need to go on. I would put in a complaint-it's hard work going through the whole process without obstacles being placed in front of us at the very beginning
Saffie- go get 'em M'Lady
Keep on fighting everyone
Lyn T
CHC - Just starting off - any advice please?
- Thread starter Florriep
- Start date
Well, no phone response this afternoon - there's a surprise!
I'd be inclined to do it by e-mail (ask for receipt) or letter Saffie.
It's more traceable.
Well, no phone response this afternoon - there's a surprise!
As geum123 says, write or email. Then there is an audit trail.
After several 'ignored' phonecalls I wrote a letter and emailled my request for an appeal following a refusal of funding for my Dad. This too was ignored and so in my total frustration I contacted my MP. Within two days I had a senior nurse from the local CCG Appeal Team phoning me to say she had tracked down my emails and letter and I got an apology as they hadn't followed the correct procedure. This was eight months after the DST mtg.
A letter of apology also arrived and a meeting followed to record why I felt their decision not to fund Dad was wrong. He needed IMO to score higher in four of the 12 domains. This has now gone to panel and I should hear from them soon.
Also I am attending another DST mtg next week for a current request for CHC funding.
So please make sure to put everything in writing and keep a copy for your own records. I have been playing this game for nearly 12 months, some have been at it much longer, but I will not give up, even though it has affected my own health. I have spent many hours looking at other cases and have studied the National Framework. I did think about getting some help at one point but feel nobody knows my Dad better then me, I just need to present the 'evidence' in a calm manner, not easy when you feel like you are swimming against the tide.
Good luck everyone and keep at 'em!
Jane
A letter of apology also arrived and a meeting followed to record why I felt their decision not to fund Dad was wrong. He needed IMO to score higher in four of the 12 domains. This has now gone to panel and I should hear from them soon.
Also I am attending another DST mtg next week for a current request for CHC funding.
So please make sure to put everything in writing and keep a copy for your own records. I have been playing this game for nearly 12 months, some have been at it much longer, but I will not give up, even though it has affected my own health. I have spent many hours looking at other cases and have studied the National Framework. I did think about getting some help at one point but feel nobody knows my Dad better then me, I just need to present the 'evidence' in a calm manner, not easy when you feel like you are swimming against the tide.
Good luck everyone and keep at 'em!
Jane
I will do so if I decide to take it further but this was just an introductory call.
The lady said the last thing she had was from November 2011!
For me it was more a point that the NHS had gone back on its promise.
Dads generation paid in and were promised NHS care from cradle to grave.
A great comment and I applaud your for it
My experience has been that it is important to read round the subject, research as much as possible, prepare information that will help, but isn't necessarily in the medical records, collect as much evidence as possible and never give up, even though it may feel like an impossible task. From day one of my mother's diagnosis I emphasised that her condition was being complicated by other problems and I wrote up a long description and history of these for use at the assessments. The nursing home have been extremely supportive throughout. I actually got the confirmatory phone call yesterday. That's been nearly two years of fighting.
NHS Continuing Healthcare Funding
Hi Florriep
First I am sorry to hear what you are going through. It is horrible, I know, I have been there with my Dad.
Secondly the District Nurse is completely wrong! There has been some good replies already to you. However, even reading some of them gave me cause for concern. People around the country appear to be getting given misinformation from healthcare professionals who should know better. Getting CHC Funding can be a hard and stressful thing to achieve but it is not impossible and it is definitely worth applying for. As my Grandma used to say "If you don't ask, you don't get!" Also why shouldn't people who have worked hard all their lives and paid tax and National Insurance be looked after when they get ill in their old age? What was National Insurance insuring them against if not this? Further people with Alzheimer's need help only because they have a disease/illness and the NHS therefore should be paying for that!
I got Continuing Healthcare Funding for my Dad who suffered from Alzheimer's Disease and was successful in arguing his case and keeping it for him at every review. Taking the DN's points in order: 1. Dementia is definitely covered by CHC. In fact CHC is not actually done on a diagnosis of condition criteria. It is an assessment of whether there is what they call a "primary healthcare need" irrespective of what the diagnosis is. 2. CHC is not dependent on whether there is a catheter or not. Having a catheter may "score" your MIL higher across some of the care domains but the application does not stand or fall on the presence of a catheter. 3. It is irrelevant that Social Services have not requested it. You don't need their permission. You or the manager of the care home can request it from your local Clinical Commissioning Group (CCG).
Other general points for you and others reading this are that it is not in my experience an ordinary DN that carries out this assessment. The CCG have specialist teams who are responsible for doing this. Also you do not have to be in a nursing home to qualify for CHC funding, you can get it in a care home or even in your own home. Another myth that is perpetuated is that "it is means-tested". It is NOT means-tested. It is purely an assessment of the person's health needs. Also I am currently helping a friend with his Dad who is in a nursing home. The manager thought he was already getting CHC Funding. He isn't, he is getting the "Registered Nursing Care Contribution" (RNCC) towards his fees. These are two completely separate things. Do not let anybody put you off claiming CHC Funding by confusing the two.
A Multi-Disciplinary Team will assess whether your MIL qualifies for CHC funding using the 'Decision Support Tool' (DST). You do not need a lawyer or to pay anyone to represent your MIL you can advocate on her behalf yourself and are entitled to be at the meeting. You can access your own copy of the DST online. Link below:
https://www.gov.uk/government/uploa...upport-Tool-for-NHS-Continuing-Healthcare.pdf
The Alzheimer's Society also have a helpful document entitled 'When Does The NHS Pay For Care' http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=75
In the Decision Support Tool your MIL will be assessed across 12 care domains and if she scores high enough across them to establish a "Primary Health Need" she will be awarded CHC Funding. Below is a quote from the DST explaining how they do this.
" Establishing a Primary Health Need
31. At the end of the DST, there is a summary sheet to provide an overview of the levels chosen and a summary of the person’s needs, along with the MDT’s recommendation about eligibility or ineligibility. A clear recommendation of eligibility to NHS continuing healthcare would be expected in each of the following cases:
• A level of priority needs in any one of the four domains that carry this level.
• A total of two or more incidences of identified severe needs across all care domains.
Where there is:
• one domain recorded as severe, together with needs in a number of other domains, or
• a number of domains with high and/or moderate needs,
This may also, depending on the combination of needs, indicate a primary health need and therefore careful consideration needs to be given to the eligibility decision and clear reasons recorded if the decision is that the person does not have a primary health need.
In all cases, the overall need, the interactions between needs in different care domains, and the evidence from risk assessments should be taken into account in deciding whether a recommendation of eligibility for NHS continuing healthcare should be made. It is not possible to equate a number of incidences of one level with a number of incidences of another level, as in, for example ‘two moderates equals one high’. The judgement whether someone has a primary health need must be based on what the evidence indicates about the nature and/or complexity and/or intensity and/or unpredictability of the individual’s needs."
Go through these 12 care domains yourself and see where you think your mother falls in each of them. Also ask for help from the care home manager, she seems supportive. Get evidence to support what you are saying from your MIL's care plan and risk assessments done by her care home. Also from the daily log/diary filled in by her carers and nurses. The CCG assessor will say "if it's not written down it didn't happen!" So the care home have got to log everything. Also a good idea and one which I did was to take your own photos as supporting evidence. So for example if your MIL is susceptible to pressure sores because of immobility or has bruising from a fall due to lack of spatial awareness or balance take photographs of the sores and bruises as they are evidence to back up your claim. Another example is if your MIL exhibits aggressive or violent behaviour (because that is how the disease can effect some people, not because they are violent people) then notify the staff and get them to document any incidents of this in your MIL's notes. This will score her higher in the Behaviour care domain.
It is a hard fight to get CHC Funding (made deliberately so) but it is well worth doing. If Social Services are funding any part of a person's care you will find that they are very much ON your side in the Assessment as if you are successful they also won't have to be paying anything anymore!
I'm trying to get the law to do with funding for Alzheimer's care changed (for the better) as having gone through the nightmare myself I think the whole issue is a disgrace. I'm currently having meetings with various politicians and trying to get cross-party agreement. So far the responses are positive. Things will hopefully be better in future!
I think that's enough from me for now! Apologies for the length but I wanted to be reasonably thorough! I hope what I have said proves helpful to you and to anybody else reading this. I wish you the very best of luck, try and stay strong, and if I can be of any further help do let me know.
Mark
Hi Florriep
First I am sorry to hear what you are going through. It is horrible, I know, I have been there with my Dad.
Secondly the District Nurse is completely wrong! There has been some good replies already to you. However, even reading some of them gave me cause for concern. People around the country appear to be getting given misinformation from healthcare professionals who should know better. Getting CHC Funding can be a hard and stressful thing to achieve but it is not impossible and it is definitely worth applying for. As my Grandma used to say "If you don't ask, you don't get!" Also why shouldn't people who have worked hard all their lives and paid tax and National Insurance be looked after when they get ill in their old age? What was National Insurance insuring them against if not this? Further people with Alzheimer's need help only because they have a disease/illness and the NHS therefore should be paying for that!
I got Continuing Healthcare Funding for my Dad who suffered from Alzheimer's Disease and was successful in arguing his case and keeping it for him at every review. Taking the DN's points in order: 1. Dementia is definitely covered by CHC. In fact CHC is not actually done on a diagnosis of condition criteria. It is an assessment of whether there is what they call a "primary healthcare need" irrespective of what the diagnosis is. 2. CHC is not dependent on whether there is a catheter or not. Having a catheter may "score" your MIL higher across some of the care domains but the application does not stand or fall on the presence of a catheter. 3. It is irrelevant that Social Services have not requested it. You don't need their permission. You or the manager of the care home can request it from your local Clinical Commissioning Group (CCG).
Other general points for you and others reading this are that it is not in my experience an ordinary DN that carries out this assessment. The CCG have specialist teams who are responsible for doing this. Also you do not have to be in a nursing home to qualify for CHC funding, you can get it in a care home or even in your own home. Another myth that is perpetuated is that "it is means-tested". It is NOT means-tested. It is purely an assessment of the person's health needs. Also I am currently helping a friend with his Dad who is in a nursing home. The manager thought he was already getting CHC Funding. He isn't, he is getting the "Registered Nursing Care Contribution" (RNCC) towards his fees. These are two completely separate things. Do not let anybody put you off claiming CHC Funding by confusing the two.
A Multi-Disciplinary Team will assess whether your MIL qualifies for CHC funding using the 'Decision Support Tool' (DST). You do not need a lawyer or to pay anyone to represent your MIL you can advocate on her behalf yourself and are entitled to be at the meeting. You can access your own copy of the DST online. Link below:
https://www.gov.uk/government/uploa...upport-Tool-for-NHS-Continuing-Healthcare.pdf
The Alzheimer's Society also have a helpful document entitled 'When Does The NHS Pay For Care' http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=75
In the Decision Support Tool your MIL will be assessed across 12 care domains and if she scores high enough across them to establish a "Primary Health Need" she will be awarded CHC Funding. Below is a quote from the DST explaining how they do this.
" Establishing a Primary Health Need
31. At the end of the DST, there is a summary sheet to provide an overview of the levels chosen and a summary of the person’s needs, along with the MDT’s recommendation about eligibility or ineligibility. A clear recommendation of eligibility to NHS continuing healthcare would be expected in each of the following cases:
• A level of priority needs in any one of the four domains that carry this level.
• A total of two or more incidences of identified severe needs across all care domains.
Where there is:
• one domain recorded as severe, together with needs in a number of other domains, or
• a number of domains with high and/or moderate needs,
This may also, depending on the combination of needs, indicate a primary health need and therefore careful consideration needs to be given to the eligibility decision and clear reasons recorded if the decision is that the person does not have a primary health need.
In all cases, the overall need, the interactions between needs in different care domains, and the evidence from risk assessments should be taken into account in deciding whether a recommendation of eligibility for NHS continuing healthcare should be made. It is not possible to equate a number of incidences of one level with a number of incidences of another level, as in, for example ‘two moderates equals one high’. The judgement whether someone has a primary health need must be based on what the evidence indicates about the nature and/or complexity and/or intensity and/or unpredictability of the individual’s needs."
Go through these 12 care domains yourself and see where you think your mother falls in each of them. Also ask for help from the care home manager, she seems supportive. Get evidence to support what you are saying from your MIL's care plan and risk assessments done by her care home. Also from the daily log/diary filled in by her carers and nurses. The CCG assessor will say "if it's not written down it didn't happen!" So the care home have got to log everything. Also a good idea and one which I did was to take your own photos as supporting evidence. So for example if your MIL is susceptible to pressure sores because of immobility or has bruising from a fall due to lack of spatial awareness or balance take photographs of the sores and bruises as they are evidence to back up your claim. Another example is if your MIL exhibits aggressive or violent behaviour (because that is how the disease can effect some people, not because they are violent people) then notify the staff and get them to document any incidents of this in your MIL's notes. This will score her higher in the Behaviour care domain.
It is a hard fight to get CHC Funding (made deliberately so) but it is well worth doing. If Social Services are funding any part of a person's care you will find that they are very much ON your side in the Assessment as if you are successful they also won't have to be paying anything anymore!
I'm trying to get the law to do with funding for Alzheimer's care changed (for the better) as having gone through the nightmare myself I think the whole issue is a disgrace. I'm currently having meetings with various politicians and trying to get cross-party agreement. So far the responses are positive. Things will hopefully be better in future!
I think that's enough from me for now! Apologies for the length but I wanted to be reasonably thorough! I hope what I have said proves helpful to you and to anybody else reading this. I wish you the very best of luck, try and stay strong, and if I can be of any further help do let me know.
Mark
Hi Mark
Very interested in your most informative reply to Florriep. I just wanted to query your bit about the Social Worker being on your side. Not my experience. I have been spoken to very rudely by my Dad's social worker - Dad had CHC funding then it was taken away at review. We have appealed - heard nothing and CCG won't speak with us as they say responsibility now rests with Social Services. Social Services are hell bent on moving dad out of his current, excellent nursing home to another home which is cheaper. Social Worker has told me and my sister that Dad does not have a Primary Health Need - I believe he does and I am a Registered General Nurse and I work in a Team that has responsibility for completing Continuing Healthcare Assessments, so I think I know what I am talking about as I have been doing this role since the whole process started. Same Social Worker has told us that it's all about money and Dad WILL move! Today said SW visited Dad, without advising any of the family of her visit, neither did she inform the NH Manager and interviewed Dad and told him he will be moving to another Nursing Home. Also told my sister that as we do not have POA for Welfare Social Services can move him without family agreement! We are speechless. The whole thing seems to be a conspiracy between CCG and Social Services. We finally managed to get copy of first DST and the Lead Nurse had written, "Funding granted but do not expect this gentleman to meet the criteria at Review. Communication and Psychological scored HIGH more like MODERATE." At review guess what happened this directive from Lead Nurse was followed to a "T". There was heated discussion especially in respect of communication, myself, my sister dad's named nurse and the Social Worker all said Communication should be HIGH but Health said no it's MODERATE - she recorded the disagreement BUT still scored MODERATE. AND the NHS Framework says - "Where there is disagreement between Health and Social Services regarding scoring of a Domain the HIGHER score should be given" Hence we have Appealed.
Hoping that the Solicitor that we have appointment with tomorrow will be able to offer some assistance. All this is beginning to have an adverse effect on my health and god only knows how my dad is going to cope if he has to move - he's well settled in the current home having been there almost 11 months.
I hope you are able to get the Politicians to hurry up and sort this mess out once and for all! Families should not have to go through this and I feel the way my father was treated today was tantamount to abuse. I thought Social Workers were supposed to act in their clients "Best Interest" or did I just imagine this.
Good luck with the good work.
Kind regards
Veronica
Mark thanks for this very comprehensive reply. Do you have any experience of the 'fast-track' CHC process when someone is in a terminal condition? I gather that this is a different and shorter process but is the DST still used?
I've no direct experience of it Pickles53
but there is relevant information on the following link as to what SHOULD happen.
Page 30
4.7
‘End of Life’ Care (Fast Track Pathway Tool)
Page 118
Appendix D
Extract of Checklist Tool
Fast Track Pathway Tool for NHS Continuing Healthcare
July 2009
http://www.solicitorsfortheelderly.com/assets/media/NHS_CONTINUING_HEALTHCARE_BOOK_MARCH_2014.pdf
but there is relevant information on the following link as to what SHOULD happen.
Page 30
4.7
‘End of Life’ Care (Fast Track Pathway Tool)
Page 118
Appendix D
Extract of Checklist Tool
Fast Track Pathway Tool for NHS Continuing Healthcare
July 2009
http://www.solicitorsfortheelderly.com/assets/media/NHS_CONTINUING_HEALTHCARE_BOOK_MARCH_2014.pdf
Fast Track
Hi Pickles53
I don't have any personal experience of the fast-track system. It was mentioned briefly towards the end in my Dad's case but as I had already secured him CHC Funding through the ordinary way it was discounted. It is used as you rightly say for people who are considered terminal, to have "a rapidly deteriorating condition and the condition may be entering a terminal phase". My understanding is that an "appropriate clinician" (e.g. GP) fills in the forms recommending a fast-track to CHC Funding. To do this they will use the "Fast Track Pathway Tool For NHS Continuing Healthcare". It is available online, link below:
https://www.gov.uk/government/uploa...le/213140/NHS-CHC-Fast-Track-Pathway-tool.pdf
This tool determines eligibility on its own, and is meant to be a much faster process than the ordinary application. However afterwards the CCG can then review the decision using the Decision Support Tool I mentioned in my previous post.
I hope this helps.
Mark
Hi Pickles53
I don't have any personal experience of the fast-track system. It was mentioned briefly towards the end in my Dad's case but as I had already secured him CHC Funding through the ordinary way it was discounted. It is used as you rightly say for people who are considered terminal, to have "a rapidly deteriorating condition and the condition may be entering a terminal phase". My understanding is that an "appropriate clinician" (e.g. GP) fills in the forms recommending a fast-track to CHC Funding. To do this they will use the "Fast Track Pathway Tool For NHS Continuing Healthcare". It is available online, link below:
https://www.gov.uk/government/uploa...le/213140/NHS-CHC-Fast-Track-Pathway-tool.pdf
This tool determines eligibility on its own, and is meant to be a much faster process than the ordinary application. However afterwards the CCG can then review the decision using the Decision Support Tool I mentioned in my previous post.
I hope this helps.
Mark
Hi Veronica
You raise a number of good and concerning points.
First regarding Social Services (SS). Like in all walks of life some social workers are good, others less so. My point about SS being on your side during this particular assessment is this: If your Dad gets CHC Funding the CCG covers ALL of his costs. Unless a person is completely self-funding then the SS will usually be paying for some of the costs of that person's care. Quite a bill. So it is in SS's own financial self-interest to have the person qualify for CHC Funding. SS in general I agree can be less than helpful. I'm afraid a lot of this is attributable to fights over finances and protecting budgets. When my Dad had to go into a nursing home we had to fight with SS to get him into a decent one. That was purely down to finances.
You are definitely right about the DST Assessment. It is certainly worth you appealing this decision. If there is disagreement then the higher band should be the one the person is scored in. Below is a quote from the DST Document issued by the Government that I linked to in my earlier post:
"If, after considering all the relevant evidence, it proves difficult to decide or agree on the level, the MDT should choose the higher of the levels under consideration and record the evidence in relation to both the decision and any significant differences of opinion. Please do not record an individual as having needs between levels. It is important that differences of opinion on the appropriate level are based on the evidence available and not on presuppositions about a person’s need or generalised assumptions about the effects of a particular condition."
Obviously you do need to have evidence and explain why you think your Dad should be in the higher category. Otherwise everybody could just say I think my relative falls into all the highest categories and that would make the DST process worthless. I would query how the CCG assessor could predict the future and influence the score at a future review. Also when someone has a degenerative disease, like Alzheimer's, they are not going to get better or improve. I know there are various spurious arguments that assessors use at the reviews to say that the person has improved in order to get the person off the funding. They have been deployed against my Dad and I but I defeated them every time. It is doable!
Remember this important point: the assessor may say that a certain symptom of your Dad's condition has improved. I would argue that is impossible in say the category "Cognition". Now this so called "improvement" may be because of good and intensive treatment by the nursing home. For example my Dad had terrible skin problems. However he was creamed all over his body 4x a day, given medication, kept well hydrated, had pressure relieving mattress and cushions etc etc to keep his skin as problem free as possible. So the assessor at one review tried to score him lower in 'Skin and Tissue Viability' category. However this goes against the rules, as a well managed need is still to be scored as a need. The DST Document says:
"Needs should not be marginalised because they are successfully managed. Well-managed needs are still needs."
So argue for your Dad to be scored in the higher bands if you can. Keep and amass evidence: photos, quotes from the care plans, risk assessments and daily records for your Dad that back up what he is like (especially at his worst) and that back up your arguments. The care home should let you have access to your Dad's care plan, risk assessments and daily notes or even give you copies of them to assist you.
SS will now be "hell-bent" on moving your Dad to a different (i.e. cheaper) home now as they are back to paying part of the bill! It is always good to have 'Enduring Power of Attorney' now called 'Lasting Power of Attorney' for your relative. However, it is at least good practice for SS to make sure someone (usually a relative like yourself) is present to advocate on the vulnerable person's behalf. The DST document says a lot about this.
When you say "god only knows how my dad is going to cope if he has to move - he's well settled in the current home having been there almost 11 months." This is a very strong argument that you can deploy to keep your Dad in the home that he is currently in. There is well-documented and accepted medical opinion that moving someone with Alzheimer's Disease can adversely impact on their health. If you can get your Dad's GP or the Care Home Medical Staff to say this it should help your case.
Further the home that SS offer your Dad has to be suitable to meet his needs otherwise that are not discharging their duty to your Dad. Check out the Care Quality Commission's (CQC) latest report on both your Dad's current home and the one the SS are proposing (Both reports should be available online on the CQC website and both homes should have copies of their latest reports on their premises for you to look at). If the proposed home has been failed by the CQC or is sub-standard, or is not equipped to meet your Dad's specific individual needs then that is another reason for not moving him. Also the SS worker's assertion that your Dad does not have a primary health need is irrelevant to the choice of care home.
Hope this is of some help
Good Luck
Also thanks for your kind wishes. I do intend to get things changed.
Mark
Can I just add that the official body for registered nurses is the NMC the RCN is a union
Thanks Mark, will have a proper read of this asap. And thanks too Geum123, it's so helpful to have someone point you in the right direction.
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