In Continuing Healthcare well-managed needs are still needs
When we’ve reviewed NHS Continuing Healthcare assessment notes for families, with a view to helping them appeal NHS decisions to deny funding, we notice many mistakes made by Continuing Healthcare assessors.
Assessment errors stem from poor interpretation of Department of Health guidelines on the part of assessors, whether out of ignorance or wilful intention to deny funding. We also hear of assessors who haven’t even read the guidelines they are supposed to be following. The result of this is that elderly people are often wrongly charged for care.
Of all the mistakes made and flawed arguments presented in Continuing Healthcare assessments there are two that stand out in particular. Today’s two-part article looks at these – and shows you what you can say in response.
Here’s the first point:
“Well-managed needs are still needs.”
This is clearly stated in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care – the official guidelines for the Continuing Care assessment process. And yet time after time we see assessment notes where the person being assessed has been wrongly scored with a low score because they are receiving care and their needs are being managed.
It is always the underlying need that should be assessed, together with the associated risks if no care were in place.
For example…
- If your relative was malnourished and dehydrated at home, but is now eating better because they are in care, their risk of malnutrition has not disappeared; it is simply being managed. An assessment should reflect the serious underlying need and risk.
- If your relative was falling a lot before going into care, and suffering injury as a result, this is a clear falls and mobility risk and should be assessed as such. The fact that a care home may be a safer environment does not negate the underlying risk and need.
- If your relative with dementia is less aggressive or confused in a care home than they were at home, the aggression and confusion should still be assessed as if no care were in place.
The same principles apply across all the health needs assessed in a Continuing Healthcare review.
In addition, it doesn’t matter whether your relative is in a residential home, nursing home or in their own home, a health need is still a health need, and a managed need is still a need – and must be assessed as such.
The National Framework (November 2012) clarifies this in full:
“NHS Continuing Healthcare may be provided in any setting (including, but not limited to, a care home, hospice or the person’s own home). Eligibility… is, therefore, not determined or influenced either by the setting where the care is provided or by the characteristics of the person who delivers the care. The decision-making rationale should not marginalise a need just because it is successfully managed: well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need, such that the active management of this need is reduced or no longer required, will this have a bearing on NHS Continuing Healthcare eligibility.” (page 21, paragraph 56)
It also states that:
“The reasons given for a decision on eligibility should not be based on… the fact that a need is well-managed.” (page 21, paragraph 58(f))
See also page 61, paragraph 11.1, and page 62, paragraph 11.3 of the National Framework for more about this.
What can you do?
If you come up against the argument that your relative’s needs are ‘managed’ – and that therefore they’re not eligible for funding – quote the National Framework to the assessors and remind them that they have a duty to follow their own guidelines, and a legal duty to fund all care that is beyond ‘just’ social care.
Coming up in our next article…
Part 2 – How to counter the argument that your relative’s needs are ‘stable and predictable’.
Read more about how to get assessed for NHS Continuing Healthcare funding.
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Just had DST Assessment for mum. They marked her mobility as Moderate despite me arguing it should be severe based upon description and mums mobility or lack of i should say. This is after she had 2 falls in care home, confined to wheelchair or chair most of the time with upto 2 carers looking after her. The severe category serves her well but not in the eyes of the chairperson. They marginalised her mobility as if she can walk.
Hello. My mother is about to be discharged from hospital to her own home. She has dementia, frequent falls, forgets to take her medication amongst many other issues. I was told she would not qualify for CHC and needs social care only citing the fact that she is now washing and dressing herself. (Surely that is what social care is for!). The nurse told me mum had made a “clear” statement of her wish to go home. However during the same conversation mum also said that I look after her, but I live 200 miles away. She has also repeatedly told them she lives with her (late) husband and her mother is her next of kin. One of my key concerns is that the nurse told me “we don’t look at how she was 4 months ago, we only look at how she is now and assess her on that”. Obviously her health has improved during her stay due to having 24/7 care. Another concern is that when I asked the nurse to put in writing that she had made a judgement that she only needs social care without assessing her she refused and said that she would do a checklist and send me the result. Surely this should have been carried out before discharging her into a means tested social care setting. I would appreciate your feedback on this. We are in Wales and I understand there are subtle differences to England but I believe the guidelines are essentially the same.
Hi there
My mum has been moved to a care home from hospital and had a positive checklist, so I am frantically learning the CHC rules.
Please can anyone help me with an initial question?
The social worker has produced a document called ‘Assessment Conversation and Supported Self-Assessment’. I need to understand the importance of this document. It has many inaccuracies and understates mum’s needs in a number of places.
The social worker has previously stated off the record that he believes she has a primary health need, so is this his own ‘needs assessment’ that we could use to prove her nursing and care needs are beyond the legal limit of the LA provision?
Hi Edward – We have never come across this document – maybe it is used locally. Your Mum would still need to go through the full CHC assessment process in order to determine whether she has a Primary Health Need for the purposes of establishing eligibility for CHC Funding. Please do get in touch if we can help further 0161 979 0430. Kind regards
Hi in the first part of this thread it states you should remind the assessor they have a legal duty to follow the National framework.
Where and what is this legal definition and where can it be found?
We have been told by the CCG chief Nurse and head of appeals that the National framework is just a guideline and does not mean they have to follow it.
We have never been able to quote a definitive legal obligation to CCG staff or executive’s.
Thanks for your comment, Beverley. We’ve made this clearer now and added an extra link at the end of the article.
Hi Angela A big thank you for all you do to help us. You have given us the strength to keep going..it is now over 6 years since we sought retrospective funding…and we are about to actually meet someone for the first time next week! It has been suggested the meeting may last an hour, Your website is very helpful in enabling us to get up to speed again ..as it is now over 2 years since our last correspondence with the authorities.
Thanks for your very kind feedback, Gill. I’m so glad the website is helpful – and I wish you well with your funding case.
NHS Continuing Healthcare (CHC) is corrupt at the core, wielding a double edged sword at those most in need, yet the actual law on NHS CHC is likely well thought out, being those in need are entitled to care regardless of their means. It is obviously from all said; those rights are abused by Councils, Government and alike deliberately, yet if you are on Income Support, they prefer to skip NHS CHC assessments, provide substandard care having completed a financial assessment. That is inhumane, and it is now time, Care becomes a specialist service, leaving the medical profession to do what it is really good at, and the corrupt councils to stay out of it and run their services properly. Let’s have one system of care for those in such need, then there would be no need for legal junk, expense. If you want red carpet of course pay for that, but let’s keep to the principle of good quality care.
I have just been turned down for Continuing Healthcare yesterday for my mother. Mum is currently receiving Funded Nursing Care (FNC) due to mixed dementia but recently declined almost overnight losing mobility and the use of both arms. She is now bedridden, doubly incontinent, cannot sit up unaided, cannot feed herself, hallucinates, is resistant to personal care. Is unaware that she is unable to walk etc which causes huge mood swings and frustration. She can only take one sip at a time and occasionally coughs when drinking. She does not know what her call bell is, where she is, why she is there, what year we are and mostly thinks I am her sister. All of this and although they agreed her needs showed complexity they are managed! Would you suggest I appeal, I wish I had read this feed before yesterday!
My disabled son’s care home staff were struggling to manage his outbursts of challenging behaviour (frustration, anger, aggression and self harm) until a few weeks ago when he was prescribed an anti-depressant. Although this has not completely eliminated his challenging behaviour, it has made him calmer and his angry outbursts less unpredictable. We have our Multidisciplinary Team meeting coming up shortly and I am concerned that they will use this drug-related improvement in his behaviour to turn him down for Continuing Healthcare funding. When someone’s behaviour is managed by drugs, can you still use the National Framework page 21 paragraph 56 to argue that well managed needs are still needs? Do we need any kind of report from the consultant psychiatrist who prescribed the anti-depressant? And can we still use the argument that his challenging behaviour would be unpredictable again if the medication was removed?
We have finally had a Checklist assessment for my mother, which we requested eight months ago!! She is in a care home due to having Alzheimer’s and other health issues and could no longer look after herself safely in her own home. The assessor said Mum did not score high enough to warrant a Decision Support Tool assessment, but in the report the assessor has commented that the Checklist is looking at mums “care needs at the present time and not how she was in the past or expected to be in the future.” We explained that the reasons mum is in a care home is because of her health needs and the risks she faced living alone, ie not eating, not drinking, risk of falls. We feel our concerns have been ignored. It appears that because mum is now in a care home, her needs are being met, so therefore she has no healthcare needs. Surely this ignores the guidelines laid out in the National Framework for NHS Continuing Healthcare and NHS Funded Nursing Care on page 61 about well managed needs. Do we just accept the checklist assessment report or should we challenge the results?
We are applying for continuing health care for my dad, who has MS. On 28th March our Decision Support Tool (DST) meeting was attended by the Continuing Healthcare (CHC) Co-ordinator, a social worker (whom we’d never met before) and my dad’s MS Nurse (who we know well). We, the nurse, and the social worker all agreed that my dad should be scored a “severe” for ‘drug therapies’. While the coordinator certainly heard us out, she concluded she couldn’t accept this there and then – and said she’d have to take the issue back to the “office” where she’d make a proper decision. Is this allowed? Certainly not very transparent. Should she not have agreed on a scoring there and then? We read that they are obliged to accept the highest scoring if there is a disagreement – should we complain about this?
Secondly, are we allowed to request to be copied into all email correspondence about the case ? Can we contact the coordinator directly to ask about this?
Many thanks in advance.
Thank you for your reply, Angela. Yes, they want “Proof to act” documentation, as I haven’t Power of Attorney, they say that I need to prove that “a best interests decision been made”. When I rang to ask what exactly they needed they specified some sort of a letter. I have asked the social worker, the local advocacy hub and the management of my husband’s care home. No one seems to understand what they require. I have made best interests decisions for my husband, but have no signed documents. The GP gave me his medical notes, so as a last resort I will ask him if thinks a letter from him might do.
I have not been asked for paperwork for the previous assessments which I took part in. Its all very confusing!
My husband as a stage 2 assessment for CHC as he was turned down the first time. As I don’t hold Power of Attorney, I have been told to provide legally accepted documentation in order for the case to proceed. I have made best interest decisions on his behalf previously, but am asked to provide proof, in the form of a letter. I don’t understand where I would get this from?
Thank you
Sylvia – Are they asking for paperwork to show you have the right to act on your husband’s behalf? And were you asked for any such paperwork when you previously made decisions on your husband’s behalf? The assessment can proceed regardless of any such paperwork – but of course it’s important that you are involved and able to input.
I have been asked to write a statement to help with my mums Continuing Healthcare funding. Is this common and if so how have people written these statements to try and support your parents assessment.
Hannah – yes, it’s a Family Statement of Needs, and I would recommend making this as detailed and comprehensive as possible. Go through each care domain in the Decision Support Tool (Behaviour, Cognition, Mobility, etc, etc.) and build a case for the score you believe your mum should be given. Also highlight every aspect of intensity, complexity and unpredictability in her care needs.
At Mum’s first MDT assessment, we all agreed the domain “score” as we went along. Today, she had a 2nd assessment & we were told that no decisions would be made today, that the assessors would note our opinion of the “score” in each domain and that they would discuss things after the meeting & send us the completed DST. We could then decide whether to appeal their decision or not. Is this a breach of the framework procedure?
Ann – that doesn’t sound very transparent on the path of the assessors. Why was your mum having a second MDT assessment? Had she previously been turned down for funding? You should be able to input into every stage of the process when the MDT complete the Decision Support Tool.
Very informative posts and replies. It is important to understand that Continuing Healthcare (CHC) eligiblity is not based on any diagnosis, health issues or problems. It is based on care needs and the application of the primary health needs test on those needs. The Coughlan case highlighted a big gap between what social care should provide and when someone is eligible to CHC funding. Ie. Someone with needs that are above ancillary and incidental may then be assessed as needs that are not of a nature, intensity, complexity or unpredictable to make them eligible.. The law would say that anyone who has needs that are above ancillary and incidental should be eligible to CHC funding, however the framework when applied does not.. This grey area is where the problem lies.
My 94 year old mum has lived in a nursing home since July 2015 and at that point was assessed for Continuing Healthcare (CHC). She has a stricture of the oesophagus, tendency to low sodium levels and other problems. It was deemed that she was not eligible. Now (October 2016) she has been diagnosed with vascular dementia which she has apparently had since last year when she had a scan, following several admissions to hospital for low sodium. Also since the last Contuining Care assessment (beginning of last October) she has had a seizure, her eyes have deteriorated and her mobility also – gone from weight bearing to hoisted everywhere, due to muscle wastage and an inability to stand, even momentarily! Her weight has dropped significantly. The doctor has informed us that the vascular dementia will get progressively worse. A lot of the time, she doesn’t know where she is – asks where her front door is and where she needs to do her cooking etc – also forgets the names of some of her immediate family even though we visit regularly. It upsets her greatly. Apparently, she should have an assessment yearly but have not been contacted. Do you think I have more chance now of getting CHC? Thank you.
Tarn – if care needs have increased then, yes, you will have a stronger case. Be sure that all evidence is taken into account: http://caretobedifferent.co.uk/supplying-evidence-for-continuing-healthcare-assessments/ and be sure to check the care notes to make sure they are up-to-date, accurate and comprehensive: http://caretobedifferent.co.uk/care-notes-not-scratch/ Make sure you get the process started as soon as you can; if you are successful, funding should be backdated to the initial Checklist (this time round), so the sooner the better: http://caretobedifferent.co.uk/getting-the-nhs-continuing-healthcare-assessment-process-started/
My mum in law has lewy body dementia and is living in a nursing home. She secured Continuing Healthcare (CHC) aprroximately 4 months ago while in hospital (2 severes in assessment for cognition and behaviour), and she now has a repeat CHC assessment coming up in 2 weeks. Since she has moved into the nursing home a dementia outreach team/her GP have made changes to her medication (increased antidepressant dose significantly, put on max dose of rivastigmine and started an antipsychotic) and her behaviour is now more settled, she seems quite sedated at times now and can struggle to string a sentence together when this wasn’t a problem for her before. However even now, after spending 5 mins with her it is clear there is still underlying irritability, though now she is much less inclined to pinch staff, shout out etc. My husband attended the home today and met with her dementia outreach nurse who said her current needs just ‘wont cut it’ for being awarded full CHC at the upcoming assessment in 2 weeks. My husband pointed out that her behaviour needs were still severe, they are just being well managed currently with medication, but the nurse was dismissive of this and said this won’t wash with the CHC. We are now in doubt over our case for full funding, but I believe our interpretion is correct and that she can still be awarded a severe for behaviour even if she is now more settled. Is this right and do we have a chance? It feels so confusing to be told with authority you have no case and its making us doubt ourselves. Many thanks.
Emma – don’t take any notice of the nurse who said your mother in law’s needs ‘won’t cut it’. Sadly, many people working within the health and care system speak either out of ignorance or because they’re (possibly) trying to put families off. It is the raw underlying care needs that should be taken into account in any CHC assessment. Just because a person is given drugs to ‘calm’ or sedate them doesn’t negate those needs. It certainly can be difficult when someone in a position of authority is telling you that you have no case, but keep persevering if you can. We can’t say whether your mother in law will or won’t be eligible, but care needs that are ‘managed’ are still care needs – and those care needs still need to be funded. National Framework page 61, paragraph 11.1: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf Also: Decision Support Tool page 14, para 28: “Only where the successful management of a healthcare need has PERMANENTLY reduced or removed an ongoing need will this have a bearing on NHS continuing healthcare eligibility.”
I have been fighting for continuing healthcare since 2004 for my mum.
We were called in to meet the assessment “coordinator” a few days ago and given the final version of the Decision Support Tool (DST) which we took home to read and reply to (on page 62). After listing the domains we didn’t agree with, I wrote that we would appeal if the recommendation was upheld by the CCG. We delivered the document back at 10.30 am, and amazingly were informed of the date of the appeal at 3pm, so a fat lot of deliberation was obviously going on at the Clinical Commissioning Group!!!!! We have had nothing in writing through the post at all, and the coordinator who is supposed to be impartial and provide both sides with documentation and assistance is anything but impartial and in fact seems to be the leader and head domain score decider of the Multidisciplinary Team (MDT), we have also been denied access to any records or paperwork upon which this decision is based. Also we face verbal hostility when visiting mother. Apart from that the DST is so flawed I think we have a good chance as long as we don’t have to deal with the same people at the appeal. Can you advise who should be at a CHC appeal?
Caroline – This may help: http://caretobedifferent.co.uk/what-are-the-different-stages-of-nhs-continuing-care-assessment-and-appeal/
This site has been a huge help to me and we now awaiting an appeal.
At the initial meeting, where we were turned down. My friend and I studied the Checklist thoroughly and felt fairly confident. However, when my friend raised a point, he was told to stop being aggressive (he wasn’t), he was simply querying a point. When I raised a point regarding the Checklist, I was told in no uncertain terms “We are not working from that, we are working from the DST”. We had had no sight of the DST notes previously to the meeting. Obviously, this attitude knocked the stuffing out of us.
Sylvia – sadly that attitude by assessors is not unusual, as the many comments on our blog indicate. The assessors have a responsibility to inform you of exactly what is being done, what the different forms are, what the different stages of the assessment process are, etc. We also hear accounts of assessors telling family members that they’re not allowed to speak and /or that any questions will be seen as aggressive. This may help you: http://caretobedifferent.co.uk/stand-your-ground-in-nhs-continuing-healthcare/
Agreed – we have a 24/7 Live In Nurse Carer for my father in law and his needs are being well managed – the CHC Assessors, supposedly trained and experienced health professionals, are unable – or unwilling – to recognise the fact that ‘well managed needs are still needs’. It is immensely frustrating and time consuming and a continual battle – we are now at appeal stage and will be using this point to support our rational that ‘correct procedures’ have not followed during the CHC process.
Plus the fact that the Assessors have wanted to pigeon hole my father in laws health needs as ‘social care’ from the very beginning of the CHC journey!
Thanks for your continued support
Mike
Wishing you well with the appeal, Mike. This may help too: http://caretobedifferent.co.uk/stand-your-ground-in-nhs-continuing-healthcare/
We had a DST assessment meeting for my mother 6 weeks ago at which the MDT gave her 1 severe (drug therapies) 4 high (including the final blank domain which the ward doctor brought into play saying she might need physical investigation for weight loss) 2 moderate and 4 low. We were pleased with these scores as we considered they gave us a good chance of getting CHC. We have received nothing in print at all but today were asked to go to another meeting with the coordinator and a student, at this meeting we were told that the CCG had reduced the severe to high because of insufficient evidence, this was noted in the coordinators write up, further that the domain which the doctor had asked for had been deleted as it should have been covered in the nutrition domain (Doctor has conveniently now left the hospital!) and the continence domain which had been high at the insistence of the Ward Manager had been reduced to moderate because thats what the coordinator remembered being agreed! When I asked what the point of the MDT was when everything could be changed like this she said it was normal for the CCG to alter the scores. The care coordinator has not been impartial as I believed she must be and had never done a DST before, further doesn’t appear to have had any training, I made the point about managed needs twice at the DST but was ignored, the coordinator saying it’s only how she is today that we can include in the assessment, consequently they also had no consideration to her future health, she has fallen three times and fractured her hip since the assessment, and fell twice on the ward before that.
If whatever is agreed at the DST by the MDT is thrown out by the CCG what on earth is the point of the DST? Please could you advise what I should do next. (Obviously mother was ineligible under the ‘new’ scores). Many thanks, Caroline
Caroline – the statement that it’s ‘normal’ for the CCG to alter the scores reveals just what a failing the process is in your case. The CCG should alter the scores only in exceptional circumstances. http://caretobedifferent.co.uk/can-ccgs-overturn-nhs-continuing-healthcare-eligibility/ Also, if the CCG feels there’s a question mark over the evidence in some domains, they should get the MDT to gather more evidence, not simply lower the scores and render your mother ineligible. The people involved in the assessment process must be trained in Continuing Healthcare. If you haven’t yet had a chance to read the National Framework, I would strongly recommend it, as you’ll pick up many more points for an appeal. http://caretobedifferent.co.uk/continuing-healthcare-assessment-guidelines/
We thought that my mother in-law- would be entitled to funding as she has severe heart failure, is bedbound, suffering from worsening dementia, doubly incontinent, struggles to feed herself & has been refused funding because “her nursing needs are not complex/really intensive, ie peg fed/NG feeding/catheter continually blocking off/bowels manual evacuation/horrendous pressure ulcers/challenging behaviour. ” We were not notified of the assessment & there was no representative with her when it took place. We have been told that they will recommend Nursing home with FNC element. Do we have any grounds for appeal?
Absolutely yes, Glynis! You have several grounds for appeal by the sound of it, to least the failure by the NHS to invite the family to the assessment, failure to involve the family in the discussion, lack of openness and transparency – something that the Continuing Healthcare guidelines make a point of emphasising – the lack of a Mental Capacity Assessment I would imagine, and no doubt much more.
My husband has been refused CHC. I am appealing on point 8 of “11 Common Mistakes”, managed needs. My husband has a history of falls, pressure sores and hallucinations (not sure what this would come under). These are all being managed in his care home. However, paragraphs 28 and 29 in the DST seem to be contradictory. Can you explain this to me please.
Thank you
Sylvia – I assume you mean point 8 of our article on the Checklist: http://caretobedifferent.co.uk/nhs-continuing-healthcare-checklist-assessment/ Paragraph 28 of the Decision Support Tool (DST) says, “Needs should not be marginalised because they are successfully managed. Well- managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need will this have a bearing on NHS continuing healthcare eligibility…” – which is fairly self-explanatory. Paragraph 29 is more about where those needs are recorded on the DST and also about excluding needs that have not yet arisen. HOWEVER, assessors must take risks into account – the various risks to the person if care is not in place, and paragraph 29 itself does not address this.
Hello – my brother and I have had our claim for our late father’s nursing home fees rejected and are going to lodge an appeal. He had peripheral neuropathy and peripheral vascular disease, plus other health problems and was immobile.
The conclusion by the panel was that my father’s care needs resulted from his condition which had led to an admission to a care home with nursing provision. His care was delivered mostly by care staff with supervision from a registered nurse. A registered nurse monitored his health and social care needs throughout a 24 hour period and would intervene with health needs such as administering of medication, planning and evaluating all care as necessary. The panel agreed that my father required a safe environment where attention could be given to ensure basic needs were met, reducing risks to physical and mental well-being. Existing community health services would respond appropriately to referrals to their service via the GP as required. The evidence presented to the panel “did not support a primary health care need at this time and was not considered to be above ancillary and incidental to the provision of accommodation.”
Do you think we have a chance of getting a good result?
Thank you for your time
Hi Janet – sorry for the late reply. I can’t say whether or not you’ll get a good result without looking in depth at your late father’s case. However, you may find the tips in the following article helpful: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/ Keep in mind also that a person does not have to be cared for by a registered nurse to receive full Continuing Healthcare funding. The qualifications of the person are irrelevant.
Thank you very much Angela. I had not seen part 1 and 2 of this topic on your site before I posted elsewhere.
I think our MDT/CCG are using the side effects of the various medications our Loved One (“LO”) is taking for underlying health conditions to marginalise our LO’s score in the behaviour domain.
There is no proper sense that our LO’s behaviour is being actively “well managed” or indeed even “managed.” It is sheer luck the combination and dosages of drugs our LO must take to stay as healthy as possible (and none of which have been prescribed to deal with behaviour – with the possible exception of an anti-depressant) have the unwanted side effect of making our LO so drowsy that our LO cannot exhibit the sorts of behaviours that MDTs/CCGs seem to favour and score much more highly (outward aggression towards others or property, rather than passive inward looking behaviours that are a danger to the individual being assessed).
If I am correct, I assume we have reasonable grounds to challenge the MDT/CCG’s misinterpretation of the DoH guidance.
Hi Andrew – it sounds as though you may indeed have good grounds. I imagine there are many cases like your LO’s.