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Hope this is the right place to post.


My mother was diagnosed with alzheimers some years ago now and we have cared for her at home as much as we could but last year we had to put her into a care home.


We have been trying to get her assessed for CHC funding so she doesn't have to pay for her care but we have been told lots of untruths and social services tried to find out how much money she has and if she owns her own house.



We have told them that we will not tell them until she has been assessed.



Now when she moved to the care home they said after about 6 weeks they would look at the assessment when she has settled in. We were paying around £150 per week and the council was paying the balance.




Approx 6 months later mom broke her hip and I arranged with the lady who does the CHC assessment that after about 6 weeks when mom settled down she would do the assessment. She never got back in touch. 4 months later I get a call saying that the care home has been told that mom should have been self funded since she moved in and I was going to get a large bill £38,000! The council had been paying it by mistake they said and took all the funding back.



I played my face and went in to see them, I told then about all the fobbing off and nothing being done for 12 months 2 days later the CPN came to see me to go through moms needs(I was prepared for her, with a few aces) they tried to downplay moms needs, clearly trying to say she didn't trigger the full assessment.




I was asked to pay the balance (I paid £10,00 a few days earlier) I refused until I had the results of the meeting. I did pay another £9,000 so I could be seen as paying half if it went to court.



I had a call today from the care home saying that they had talked to the CPN and they had rethought on what I had said and they had changed the one from a B to an A (primary) and a C to a B (this pleased me. She then pushed me to make payment. I said i think it was ok but had to speak to a solicitor friend of mine before I confirmed on Monday (my turn to fob them off)



Now I have a problem, if I pay them the balance mom will have about £5,000 left in her account plus her house, she has household bills and other house related costs even though she is not living there. I don't want to pay the balance.



What is the best action to take? Do they have a right to make us pay it all straight away? I think its very unfair as its not our fault but the council that has put us in this position with such a large amount to pay in one go.

Thay have said if I don't pay then they will serve 28 days as I signed a contract when I moved mom there and she would go on the at risk register and will be moved.


I really don't know what to do

Edited by honeybee13
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Sorry to hear what you are going through with this.


Now if the Council may or may not pay for funding is based on an Assessment of that individuals Needs (which should be free) and a Financial Assessment (means test).


These links may be of help:


When the council might pay for your care: https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/when-the-council-might-pay-for-your-care/


Financial assessment (means test): https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/financial-assessment-means-test/


I could be completely wrong here but from your post as you refused to give the council the Financial Details they were requesting (as this is part of the assessment to see if your mother is entitled to funding) the Council has now classed it as they should have been self funded probably due to the refusal to provide that information.


I also think you need to make a formal complaint to the Council about this also asking for a copy of there continuing healthcare policy to see if they have followed it.


Importantly you need to know exactly why the Council are saying your Mother should have been Self Funded.

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Is your mum's house being sold?


If she owns a house and it isn't disregarded for some reason - a spouse living in it for example - I'd think she wouldn't be entitled to any council funding.


Does the contract with the home make you a guarantor of any unpaid fees? Often the family member who arranges the care home place is made a party to the contract (jointly with the resident).


I went through a CHC assessment with my mother earlier this year, she too had Alzheimer's. It's a very high bar they set. If I were you I'd assume that CHC will not be granted but continue to push for a full assessment and see what happens. It sounds as if you might only have had the preliminary CHC assessment, not the full assessment.

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A bit more info that I emailed the council and the care home.


My name is Mr XXXXXXX, and my mother is XXXXXXXX who is a resident of XXXXXXXX Care Home. My uncle (XXXXXXXXX) and I have Lasting power of attorney for Health and Financial.


Recently I was told by the care home that my mom should be self funding and they sent me a bill for £38,000, I have paid £10,000 and will transfer another £9000 across shortly to XXXXXXX so that I have paid half of the outstanding amount as I would like to show I am being fair in this situation. This has been backdated to the time my mother moved into XXXXXXXXX. We do not agree with the decision as the way my mother has been assessed has not been done properly. I would like you to reinstate the funding she had until she has been assessed properly and in accordance with the National framework and by Law. (please see the attachment, especially the highlighted parts)


Since my mother has been diagnosed with Alzheimers we have had numerous social workers that seem to disappear and be replaced by someone else. We have asked quite a few times for CHC checks as we believe that XXXX should be NHS funded but it always seems to fall on deaf ears or we are told she would not trigger the required score. they have asked numerous times if mom owns her house and how much she has in the bank and the answer from us is always the same, "Follow the correct procedure and CHC check my mother first, we are not legally entitled to tell you until you do so".

My mother was then assessed using a SAP3 which showed that she needed to be in an EMI Residential care home. She was then found a place and we were told that she would get the check after she settled in.

Each time the CHC is discussed we are told she won't trigger and are fobbed off. In case law there are a few cases which I am now familiar with and also familiar with the National Framework and the Guidance notes that go with it.

We have and are still being misinformed about the process and the questions that relate to the checklist.


With alzheimers my mother has suffered drastic weight loss due to the condition which I pointed out to the care home when we moved her there, we stabilized it at home when we were looking after her before she moved. After a meeting some months after my mother had settled in she looked like she had lost more weight, I questioned this in the meeting and she had lost weight every week she had been there, the staff then said that they would consult the nutritionist. She now has a supplement drink.


The weight loss issue came up again today when we had a meeting at XXXX with the CPN and XXXX to go through the CHC checklist. The CPN did an assessment they both said it was now managed so not a problem, the problem is still there regardless of the care given and the guidelines are not being followed correctly. I am awaiting the results of the checklist to see if my next step is to advise my solicitor to contact you or not.



The attachment which should be read by anyone who has a relation with Alzheimers NOT getting NHS funding


Stage Five: Moderately Severe Cognitive Decline

Major memory deficiencies are present beginning in stage five, and people in this stage of the disease may require assistance with activities of daily living, such as bathing, dressing, and preparing meals. Memory deficits in this stage are severe, with individuals often forgetting prominent bits of information that affect their daily lives – such as their home address or phone number. They may not be able to identify where they are (orientation to place) or what time of day it is (orientation to time). Stage five lasts, on average, one and a half years.

Stage Six: Severe Cognitive Decline

Also known as Middle Dementia, stage six marks a period in which a person requires substantial assistance to carry out day-to-day activities. They may have little memory of recent events and forget the names of close friends or family members. Many people in stage six have limited memory of their earlier lives and will also have difficulty completing tasks or successfully exhibiting cognitive skills such as counting backwards from 10.

People in stage six may also begin to experience incontinence of bowel or bladder, and speech ability is often diminished. Significant personality changes may also be noticeable at this stage, as individuals may suffer from delusions, anxiety, or agitation. This stage lasts an average of about two and a half years.

Late-Stage Dementia

The seventh and final stage comprises the final stage in the three-stage model: late-stage dementia.(which I believe Karen is now at)

Stage Seven: Very Severe Cognitive Decline

Also known as Late Dementia, stage seven is the final stage in the progression of Alzheimer’s disease. At this stage, most people will have lost their ability to speak or communicate. They often require assistance with most of their activities, including toileting, eating, dressing, bathing, and other daily activities, around the clock. Because people in stage seven often lose psychomotor capabilities, they may be unable to walk or require significant assistance with ambulation. This stage lasts an average of two and a half years.

Alzheimer’s disease is a progressive disease that gradually worsens over a period of four to 20 years. On average, however, most people live between four and eight years following diagnosis. The progression of the disease may be different for each individual, but family members and caregivers should familiarize themselves with the typical stages that occur throughout progression. It’s a challenging road to travel for both the person with Alzheimer’s disease and those who love them, but knowing what to expect can help to ease some stress and uncertainty.




Three vital points

Firstly, no one can say whether a person will be self-funding until the Continuing Healthcare funding assessment process is complete. That’s the whole point of the assessment process. Any health or social care professional involved who does not understand this has a serious gap in their knowledge and should not be influencing the funding decision.

Secondly, whether or not a person pays for care has nothing to do with how much money they have or whether they own a house. Instead, it is about the extent of their care needs ONLY.

Thirdly, the fundamental principle behind the NHS Continuing Healthcare assessment process is to ascertain whether a person’s are needs are above or below the legal limit for local authority care. Here’s a general rule: local authorities provide social care (which is means tested) and the NHS provides healthcare and nursing care (which are not means tested). The divide between social care and healthcare/nursing care is a legal divide, as seen in the Coughlan case. If the NHS pushes responsibility for care onto a local authority, and claims that the care needs are just social care needs, it risks putting the local authority it an illegal position; at the same time, the NHS fails in its duty to provide nursing care free at the point of need.


The National Framework also includes a section on what eligibility should not be based on, and this includes:

• an individual’s diagnosis

• where care is to take place

• the ability of the care provider to manage care

• the use (or not) of NHS-employed staff to provide care

• the need for/presence of ‘specialist staff’ in care delivery

• the fact that the need is well managed

• the existence of other NHS-funded care

• any other input-related (rather than needs-related) rationale



Although the NHS CHC process is largely about funding, it is also designed to identify current and ongoing care needs. In Continuing Healthcare funding assessments, most NHS assessors start with the premise that the person being assessed must be shown to have a ‘primary health need’ – and if they don’t then by default they will be regarded as having only a social care need. In such instances the individual is then means tested. However, from the implementation of the NHS Act 1946 and the National Assistance Act (NAA) 1948, if a person has care needs that are more than simply social care then by default they have a health care need – and the NHS should provide funding.


THE POINTON CASE 2003 - A complaint to the Health Service Ombudsman against a local Primary Care Trust made on behalf of Mr. Pointon (Case Number E.22/02-03).

The ruling led to the principle that NHS continuing healthcare could be provided in any setting, not just care homes with nursing. It also provided confirmation that Alzheimer’s Disease was accepted as a ‘primary health need’.

Mr Pointon suffered from Alzheimer’s disease and had a range of mental and physical health care needs. These included incontinence, cognitive impairment, verbal communication difficulties, inability to feed himself and a requirement for constant supervision and reassurance.

The Ombudsman found that Department of Health guidance had not been properly followed because the continuing healthcare assessment tools used in his case were too focussed on physical needs to the detriment of his psychological needs. Furthermore, Mrs Pointon was providing a high level of personalised care with great skill. The fundamental principle established in this case was that the nursing care provided by Mr Pointon’s wife was equal to, if not superior to that which Mr Pointon would have received in a hospital dementia ward.

This challenged the assumption that nursing care can only be provided by qualified nurses. Furthermore, it led to a cultural understanding that assessment toolkits should be needs focussed rather than dependent upon whether the need is being met by a specialist


If the assessors seem particularly obstructive, they could be in breach of the Theft Act 1968.



The Grogan case

In 2006 Maureen Grogan successfully challenged Bexley NHS Trust in the High Court about their decision not to provide her with fully-funded NHS care (Continuing Care). Mrs Grogan was severely disabled by multiple sclerosis and was chronically ill. The High Court ruled that the NHS’s decision not to provide care was “fatally flawed” and that the NHS had wrongly moved the goalposts in defining her needs.

1. Remember that every Continuing Care assessment should be ‘Coughlan compliant’. This means that the assessment must be lawful and adhere to the principles in the Coughlan case. Pamela Coughlan received full-funded NHS Continuing Healthcare funding for her needs. It is therefore logical (as the judge states) that anyone whose needs are the same as or greater than Pamela Coughlan’s will also meet the criteria for full Continuing Care funding.

2. If you hear NHS assessors making comments that your relative is unlikely to be successful, ask them if the assessment has been properly carried out in the light of the Coughlan case. Some assessors state that they have never heard of the Coughlan case – and this is a good point at which to explain it to them. If they have already heard of it – AND they realise you have too – you are in a better position, although many families report that assessors do not necessarily follow its principles.

3. Similarly, if the assessors or the Decision Making Panel say that your relative has social care needs, not health care needs, and that you will need to pay for care, remind them of the mistakes made originally in both test cases where care needs were improperly defined.

4. Say that you will have no hesitation in taking your case as far as possible through the courts. Whether you ultimately do that or not is your choice. But your statement will let the NHS know how seriously you take the assessment process and that you will not accept anything less than a fully legal approach to Continuing Care funding.

5. If you feel that an assessment is not being conducted properly, or you disagree with the verbal recommendations being made, ask the assessors how familiar they are with actual healthcare law (not the Dept of Health guidelines, but the law). Very often they won’t be familiar with case law – the legal framework in which they themselves actually operate. At this point you can remind them of the Coughlan and Grogan cases, and state that your position would be upheld in a court of law.

6. If the assessors say that they are following the Continuing Care guidelines and that’s what counts, remind them that the guidelines do not override the law.

7. If the assessors seem particularly obstructive, they could be in breach of the Theft Act 1968.

8. If you’re told that your relative is ‘stable’ and that their needs are ‘predictable’, and for that reason they are ineligible for fully funded NHS care, remind the assessors of the judgment in the Coughlan case; the case stated that the needs of people with ‘stable yet chronic conditions’ (not just acute conditions) should be reviewed in a Continuing Care assessment, and that the NHS may have a duty to fund care for those needs.

9. If your relative is in a nursing home – or in a residential home and receiving what is effectively nursing care – and yet you are struggling to get funding, remind the assessors of their duty to apply a ‘primary health need approach’. This came from the judgment in the Coughlan case – and the judge commented that the ‘vast majority’ of people in nursing homes should have their care fees funded by the NHS, and that only if someone’s health care needs are just ‘incidental’ to their overall care needs should the responsibility be passed to Social Services for means testing.

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Everyone who receives full time care and who has health needs should be assessed for full NHS Continuing Healthcare funding.

However, most people who need full time care are told they have to pay for their own care, and many people find that they are assessed first by their local authority – to look at their financial means.


This is the wrong way round.


Despite what health and social care people may say, you don’t necessarily have to pay for care when you go into a care home – or when you have full-time care at home.


If you have health needs and your local authority does a means test before you’ve been assessed for NHS Continuing Healthcare funding, this puts this local authority in a potentially illegal position and any subsequent care fees charged could be illegal.


But how can you back this up when you’re speaking to Social Services?


Here are some suggestions:


Health law

The fundamental principle of healthcare in the UK is that, no matter how old you are, if you need health care or nursing care, you do not have to pay for it.


The National Health Service Act 1946 outlined this clearly.

The 2006 National Health Services Act did the same.

The new Health and Social Care Act 2012 also preserves it.

The new Care Act makes it very clear that people should be considered for NHS Continuing Healthcare funding before any financial assessments are carried out.

The fundamental principle has not changed.


It must be proven that a person does not have a ‘Primary Health Need’ before they are means tested or asked to pay for care – and to do this there must be an NHS Continuing Healthcare assessment first.


A social worker or local authority/council representative must be involved in the NHS Continuing Healthcare process if it appears that there is any chance a person may be eligible for funding.

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Some, if not all, of it is cut and pasted from this website HB. I've seen it before.




It's the website of, as far as as I can see, a campaigning group advisory service. It's certainly not an official site. I came across it when researching for my mother's CHC assessment earlier this year.


Whilst I don't doubt that they are giving broadly accurate advice some of it is misleading. For example statement that "whether or not a person pays for care has nothing to do with how much money they have or whether they own a house. Instead, it is about the extent of their care needs ONLY".


I'm assuming OP's mother is in a private care home. It's a private business. You enter into a contract with them for residential accommodation and care services. It's no different to any other type of contract someone enters into, how you find the money to pay them is not their concern. You are obliged to pay the fees you have contracted to pay. If some or all of those fees come from Council or NHS sources fine. If they don't you have to find them personally. You can't refuse to pay the care home the fees they are contractually entitled to just because you haven't received money from the state that you think you should do. Nor is there any obligation on the Council to fund your care home fees from the start until a CHC assessment has been completed (unless the Council commissioned the care home place - I'm assuming it didn't here). If you don't pay the care home fees they could sue you for them the same as any contractual debt and it would be no defence to say 'I didn't pay the council home because I was waiting to get money from someone else'.


Mind you, I've never heard of a case where a care home literally put a resident on the streets if the fees were unpaid. I'm sure that would breach their care home licence and several other laws too. More likely they'd take court action to recover the fees.


I'd think OP has a good case to take to the Local Government Ombudsman for the delay in the initial assessment. But not a good case for refusing to pay the care home. It's not the care home's fault that a CHC assessment hasn't been done.

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I agree with some of what you say but the manager of the care home and their employees have been telling me for nearly 12 months that mom would not trigger the CHC assessment, this is totally wrong as they are looking that the problems she has due to the alzheimers are being looked after successfully so she would not be eligible! They are also at fault as well as the council.

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I agree with some of what you say but the manager of the care home and their employees have been telling me for nearly 12 months that mom would not trigger the CHC assessment, this is totally wrong as they are looking that the problems she has due to the alzheimers are being looked after successfully so she would not be eligible! They are also at fault as well as the council.



I don't see how that makes them at fault. Whether a CHC assessment is successful isn't a decision for them, and nor are they making such a decision. That doesn't mean they can't express an opinion or that it somehow becomes their fault if the Council/NHS in your area haven't done the assessment yet. And it's irrelevant to your obligation to pay their fees!

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Whilst I have empathy for your situation, your letter will not work.

Quote . I would like you to reinstate the funding she had until she has been assessed properly and in accordance with the National framework and by Law.


Because you will not release the financial situation AND you state you have lasting power of attorney you will or rather your mum will be billed. If its not paid, the department could go to court and get an order. Most likely they would do a land registry search and just put a charge on the house.


Like I Say IM empathetic for your situation but you need to stop being so passive aggressive, let all the relevant people know the financial situation and then you will get a proper assesment.

NHS is not free, its free at the end user stage.

It all comes under primary health need.

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