10 misleading statements about care fees

Published 24/11/2017

Please note: This article was published prior to July 2022, and some information may be outdated.

Don’t be misled by some press and media reports about care fees

There’s been a lot lately in the press and on TV and radio about NHS Continuing Healthcare. This is of course very welcome.

However…

On the one hand, it helps raise awareness of NHS Continuing Healthcare – something many families are never told about when a relative needs care. Greater awareness is very much needed.

On the other hand, what’s reported in the media can sometimes be misleading, even if there is good intent behind it.

Many people never question whether or not they should be paying for their care. We’re conditioned to believe that we simply have to.

However, you may not have to pay – no matter how much money you have and regardless of whether or not you own your own home.

NHS Continuing Healthcare funding is NHS money that covers the full cost of care for people who meet certain criteria in terms of their care needs.

10 misleading statements about care fees

These are some of the misleading statements we’ve heard recently – statements that can perpetuate the ingrained myths about care fees:

1. “Having care at home is always local authority care.”

2. “You may be able to access NHS Continuing Healthcare to fund your social care.”

3. “If you have some money then you’ll be self funding.”

4. “Anyone with savings or assets over £23,500 will be expected to contribute to the cost of their care.”

5. “Even if you get NHS Continuing Healthcare you may have to top it up yourself.”

6. “The care authorities have told me to use my savings to fund my relative’s care.”

7. “The local authority won’t take your house until you move out of care or you die.”

8. “The ‘dementia tax’ will apply to everyone.”

9. “Dementia is social care.”

10. “NHS Continuing Healthcare is complicated.”

All of these statements are misleading.

There are two distinct types of care

In our previous article, ‘Care fees – and why I shout at the radio‘, and in many others too we’ve highlighted how people end up incorrectly paying for their care. It’s worth highlighting here more of the false information that’s ‘out there’.

The biggest point of confusion when it comes to care fees relates to the ‘type’ of care being provided. Many people are unaware that there are two distinct types of care: 1) social care and 2) healthcare/nursing care.

Mixing these up leads to care fees being incorrectly charged.

Local authority care is social care and is means tested. NHS care on the other hand is healthcare/nursing care and is NOT means tested. The difference between social care and healthcare is a crucial one – and this is the sticking point in most NHS Continuing Healthcare disputes.

Let’s return to the 10 misleading statements about care fees

…and put them right:

1. “Having care at home is always local authority care.”

Nonsense! NHS Continuing Healthcare funding is available for care at home or in a care home – or anywhere else for that matter. The location is irrelevant. What matters are the care needs.

2. “You may be able to access NHS Continuing Healthcare to fund your social care.”

NHS Continuing Healthcare covers healthcare and nursing care needs – but if a person is successful in securing this funding, it will also cover all their social care needs. However, the primary purpose of NHS Continuing Healthcare is not to fund social care. Talking about social care and healthcare in the same breath without making the distinction between the two can be confusing and misleading.

3. “If you have some money then you’ll be self funding.”

and…

4. “Anyone with savings or assets over £23,500 will be expected to contribute to the cost of their care.”

These two statement are so common – and yet they’re completely wrong! Your care needs and your money are two completely separate things. You should only be means tested if:

a) you have been assessed for NHS Continuing Healthcare funding

AND

b) you are genuinely not eligible for NHS Continuing Healthcare.

Your money/house/assets relate to social care ONLY.

The only time anyone should make statements 3 and 4 is if they’re referring to social care only AND if a person has already been considered for NHS Continuing Healthcare AND if the person making these statements makes it crystal clear that they’re talking about social care ONLY.

5. “Even if you get NHS Continuing Healthcare you may have to top it up yourself.”

It is illegal under NHS legislation for people to be asked to top up NHS Continuing Healthcare funding. That’s not to say it doesn’t happen though. Top ups are for social care ONLY.

6. “The care authorities have told me to use my savings to fund my relative’s care.”

You do not have to use your own money to pay for someone else’s care. The authorities should not take your own money into account in any financial assessment. Also, as we’ve said, paying for care relates only to social care,

7. “The local authority won’t take your house until you move out of care or you die.”

If you need social care (as opposed to healthcare/nursing care) and you’re in a care home, the local authority will tell you you have to sell your house to pay your care fees. You can however arrange a ‘deferred payment’ scheme with the local authority, in which case statement 7 is correct. To say it as a blanket statement, though, is misleading.

8. “The ‘dementia tax’ will apply to everyone.”

Caps on care fees relate to social care only – because it’s only social care that is means tested. Similarly, any talk of a ‘dementia tax’ relating to people’s homes and assets applies to social care only – for the same reason.

So keep that in mind if you hear people talking about care fees. NHS Continuing Healthcare is not affected by any new proposals relating to social care fees. The only time NHS Continuing Healthcare might change is if there are changes specifically to NHS Continuing Healthcare and wider NHS funding – not local authority social care funding!

9. “Dementia is social care.”

Many people are told that NHS Continuing Healthcare funding does not apply to people with dementia – and that anyone with dementia needs social care, not healthcare. This is absolutely false. Receiving NHS Continuing Healthcare does not depend on a specific diagnosis; instead, it depends on the extent and nature of a person’s overall day-to-day care needs, whatever their cause.

10. “NHS Continuing Healthcare is complicated.”

Many people say this, and if you look at the length of the National Framework guidelines, you could be forgiven for thinking so too. However, in our view, it’s not so much that NHS Continuing Healthcare is complicated; it’s more that many assessors seem to make it complicated.

The actual NHS Continuing Healthcare funding recommendation requires a certain degree of professional judgement, and yet many families report there being far too much subjective interpretation of the guidelines by assessors. Many assessors also lack training and don’t understand the proper process – or even the eligibility criteria in some cases. It’s a shambles.

That’s why it’s absolutely vital that you are as well-informed as possible before you attend any NHS Continuing Healthcare assessment. The guidelines and the legislation are clear. The essence of them is straightforward and can be summed up in three sentences:

Whether or not you pay for care does not depend on your money or your house – it depends on your care needs only.

People needing care should be considered for NHS Continuing Healthcare BEFORE any means testing takes place – and if they meet the eligibility criteria, the NHS has a legal duty to pay for all of their care (including any social care needs they have).

Eligibility for NHS Continuing Healthcare is based on the legal limit of local authority social care – beyond which a person is by default an NHS responsibility and must be fully funded by the NHS.

Caps on care fees, a ‘dementia tax’, top ups, savings, selling your house or ‘deliberate deprivation’ – this is all to do with social care ONLY. The care authorities should not be discussing any of this with you until you have been properly considered for NHS Continuing Healthcare funding.

If you hear or read any of the 10 misleading statements about care fees that we’ve highlighted in this article, be cautious. Make sure you know what’s actually correct.

If you’re new to care fees and NHS Continuing Healthcare, get started here.

More vital information about paying for care.

Tagged Categories: Care fees, CHC funding, Legal and financial matters, NHS Continuing Healthcare

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44 Comments

Meggie January 30, 2018 at 12:23 pm

Jenny,
Anyone who has experience of retrospective claims when someone is cared for at home -
Just to update and ask for further advice. I spoke to a solicitor (expert in NHS Continuing Healthcare) this morning and he couldn't help. He said there was no case as we had provided the care ourselves. In other words there are no care home fees/care agency fees to reclaim so we can't claim anything even if my father were found eligible in a retrospective assessment.
This legal opinion makes me feel there is not point even pursuing a formal complaint, even though my father was denied lawful assessment processes and thus care/funding, it seems there is nothing at all that can be done. A letter from a hospital or the CCG saying sorry will do nothing to change what happened and in many ways the inadequacy of such an apology would in itself simply add to the distress and helplessness we have felt all along.
Advice appreciated. Could a complaint to the Ombudsman offer anything? We always felt the lack of assessment and thus denial of care/funding was wrong but were powerless in the face of the NHS. We are just as powerless now and even the law can't help.

Meggie January 30, 2018 at 5:30 pm

Thanks Jenny,
The point is we did give up jobs. My sister was a self-employed mobile hairdresser and gave up her business entirely and I was working full-time until the stress of working all week and then driving a 300 mile round trip to relieve my sister at weekends became too much. We both lost our income. I struggle to see how this loss is any different from the loss of continuing to work and paying someone else/care home to provide care.
I fail to see any way in which to "make a noise" in public. The media lack interest and understanding. I see no other course other than to pursue complaints through NHS complaints procedures and then the
ombudsman. Restitution seems as impossible as getting an assessment was.

Jenny January 30, 2018 at 3:33 pm

I'm guessing that if you can show no financial loss from providing care to your father then a claim for restitution would be difficult. If you or your sister gave up jobs, cut down hours, took respite care, or sold property then it would be more straightforward, as those are directly referable losses. There is provision for ex gratia payments to be made by CCGs, but I can't imagine these are offered too much now. It may be worth quoting back the words from the guidance on unassessed periods that claimants and NHS should not profit from a failure to assess. As it stands, the NHS has certainly profited from you providing 24 hr care at home.
If the money is less important than making public what has happened, I'd be tempted to make as much noise as possible in order to highlight the occasions when an assessment could have been made, but wasn't .

Simon Lincoln January 24, 2018 at 3:57 pm

PMMC-
Independent or not there is a statutory obligation to follow procedure and guidance.

The assessment stages are:
1. NHS Continuing Healthcare (CHC) assessment
2. Decision Support Tool assessment
3. Funding (or not)

The CHC check list done by a nurse (normally).
The CHC assessment tool is here https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213141/NHS-CHC-Checklist-FINAL.doc

I have a few questions which may help, help you:
Where is the family member now?
What do you feel are the health needs? what does the family member need help to do?

Simon

Steve January 15, 2018 at 2:56 pm

Hello Simon, Meggie and everyone else that are waking up every morning with your stomach churning and feeling sick at the thought of another day fighting for what you know is right. "DONT GIVE UP IT'S WORTH IT"
We had the call this morning that my father had been awarded fully funded NHS Continuing Healthcare. After months of NHS and Social Services preaching that he wouldn't qualify and throwing everything in our way to stop it, this morning's call proved if your prepared to go all the way "you can win". Thanks to this site and everyone that contributes for the encouragement to keep going.
Regards
Steve.

Angela Sherman January 22, 2018 at 5:15 pm

Thanks for your kind feedback on the website Steve - and well done for persevering with your father's case.

Jenny January 15, 2018 at 5:08 pm

Well done Steve! Keep alert. Keep excellent notes on your father's behaviour and care so that you're well prepared for the 3 months review which could be at any time after 3 months, and might be a full Multidisciplinary Team or just a nurse assessor, and may well be dropped on you with no notice.
I hope you find a suitable care home for your father, and that he receives good quality care, and that you can all relax a bit after your efforts on his behalf.

Meggie January 15, 2018 at 3:52 pm

Steve, So good to hear that it can and does sometimes happen. Well done. You must be glad you persevered. But it doesn't excuse the behaviour of all those people who effectively tried to persuade you not to bother. No-one should be put in a position where receiving essential healthcare is something they have to fight for nor should healthcare be something arbitrary. My father was granted NHS Continuing Healthcare (CHC) through FastTrack, only because a doctor thought he was days from death. He had been in need of full-time care for 18 months prior to this. Throughout this time NHS staff and a social worker misinformed us about what was available, ignored the law and determined all his needs were social care without assessing him. Once Fast Track was agreed the CCG ignored all our letters/claims for care costs and only my attending a public meeting and asking them to pay in front of an audience finally got results. During the 18 months of unassessed care my sister and myself (she gave up her job) had to provide everything. As prior to Fast Track no assessment took place I cannot appeal a wrong decision and now one of the hospitals involved is refusing to investigate my complaint about lack of assessment and staff who ignored Coughlan and CHC National Framework, deliberately denied care and access to assessments that would have provided care. A letter from my MP as so far achieved nothing. The hospital won't look at my complaint, citing deceased patient confidentiality as an excuse, and there is nothing it seems I can do to make them. It was months after dad's death before I finally felt strong enough to deal with this complaint but it seems even now nothing is straightforward and again I will have to fight, even to get my complaint looked at.

Simon January 15, 2018 at 3:50 pm

Hi Steve,
I am very pleased to hear of the success in funding and thank you for your kind words. I am pleased that I may have helped.

I am even more pleased that your Father will be in a place that will be given a fair chance to make his life more settled. I would seriously consider private counselling for your family, as in my case 4 for the family (including myself) became clinically depressed after the trauma and the experience and worry.

I expect the funders will not, but if they try and move him in future (13 week review or 12 month reviews), the CCG/ social services will then try and involve other facilities by sending your Fathers notes to them. These units will then assess and and potentially agree they can handle his condition. Some times these places are too busy to make a in depth assessment and are inspirational in their thinking. Others can be good.

In my experience, the funders do not go into the detail of the medical notes, they delegate this responsibility to the receiving facility. This adds massive stress to the family and patient. (in my case the new facility then put my Father back in A&E when his condition could not be handled by them). We went around the process 3 times.

I stopped the CCG/ Social services sending the medical notes without an understanding by using the Data protection act. In the data protection act, sharing of information is only lawful if "it is relevant, to share the information".

I argued successfully, "how can the the CCG/ social services pass medical notes to external bodies without an understanding of what the information is". With out an understanding of information is contained in with, they are in no position to judge if the dissemination of it is relevant.

I then formally redrew my permission to share medical information by writing to chief executives until such time it was proven to me that they had read the notes. (they had not ever done this, due to "time pressures").

Please think about yourself aswell, this is a long journey and the strongest ppl break.

Simon

Jane Shaw January 13, 2018 at 10:38 pm

Hi - my dad is 74 and has the following : temporal lobe epilepsy, dysphagia, osteoporosis, and is doubly incontinent .... he had a severe stroke at the end of November and is now paralysed on his left side. We were told he needed 24h nursing care and had initial meetings with all the Multidisciplinary Team (MDT) at the hospital. Mum had been caring for him up to the stroke. We have been told he was eligible for funding - not sure what or from where. The hospital tried to get Mum to sign a form when I wasn’t with her that she didn’t understand. Over Xmas he was moved to a community hospital ward and this week was seen by a doctor who said he could be discharged in a few days -
Mum said where to - we have this week been contacted by age uk who sort nursing homes out and had chosen a couple which we thought suitable - by the time Mum managed to speak to the coordinator one of the places had gone. The implications seem to be that the community ward doesn’t know we have started this process
and we have not been given enough info about how it works. Today a nurse brought another form to sign - Mum refused as I wasn’t there and she didn’t really know what it was for. I have suggested Mum rings the social worker at the hospital to see what is going on - Mum is worried they will try to send Dad home with carers - she can’t cope any more and her health is suffering , plus she has type 2 diabetes. I do as much as I can but my husband is type 1 and has metastatic prostate cancer, and our son is also type 1 - I think I do enough already. Any advice?

simon January 14, 2018 at 9:58 pm

Hi Jane,
Getting the NHS or social services to communicate with family is a challenge. ( they are busy, and this is easily missed by them).

I would attempted to speak with Ward Manager social services as you have said.

Then I would call PALS in in the hospital to raise a concern with them you are not gaining the full information on what the future is for your father. They would then contact the ward, and find the correct people involved and get them to reach out to you.
PALS are limited in what they can do, but encouraging Wards to communicate is one of the areas they in my experience where good in.
Google " PALS [your hospital or area)"

I would also look into getting Power of Attorney for both your patients (health) as this makes everything alot easier as medical professionals then are obligated to communicate with you directly.

Simon

Steve January 4, 2018 at 7:42 pm

Simon its the first time I've smiled for weeks, Have you got a crystal ball? Everything you are saying is happening right now. Only today we had three care homes refuse to even assess him due to his behaviour scores. Dad had a Deprivation Of Liberty Safeguard (D.o.L.S) order served within days of admission and Social Services are now suggesting (in a round about manner) that I hold information back regarding his darker side to secure a place in a care home. If the outcome wasn't so serious it could be laughable!

Simon January 4, 2018 at 10:45 pm

Hi Steve,
Another top tip. If you can always wear a suit when meeting anyone related to this. It changes things weirdly in my experience.

This is tricky.. always be calm and professional, it unsettles them more than anything else.

S

Simon January 4, 2018 at 10:34 pm

Hi Steve,
I am pleased you are keeping chin up.
Having the Deprivation of Liberty Safeguard (DoLS) team is perfect.
1. I would contact the DoLS assessor (they should have written to you with report) and inform them that Decision Support Tool (DST) assessor stated in the DST she felt that medication was being used for the ward to manage behaviour and not clinically needed. State you have serious concerns that your father is being drugged for this reason and you wish for them to investigate. The DoLS assessor will contact DST assessor and i bet she retracts statement, or " miscommunication". I actually would not think the ward is drugging your father unnecessarily but it will clip the wings of that DST assessor being unprofessional. DoLS team will engage a psychologist to investigate.. be there if poss to get their details as second opinion very useful.

2. Find the line manager of the person who told you to understate condition to nursing homes. Email them ask them to confirm that they are advising you to be untruthful/ mislead/ "understate" a the clinical needs with external organisations. They will not. That should make them stop that dangerous game. Ask them also to confirm if the DST is "clinically led".

I would use NHS choices to research a nursing home which specialises in challenging behaviour or a neuro rehab with challenging behaviour. (You will know whats best, i dont know enough)

Social serives and CCG adult services team did not provide options in my case.. i found them.

Let me know if you have any more questions.. i do want to help.

Simon

Steve Fearnley January 3, 2018 at 5:32 pm

Hi, Thanks for the replies, the saga carries on with him still in hospital and still under 1 to 1 supervision (8 weeks) We eventually got them to agree to an NHS Continuing Healthcare (CHC) Checklist in which he scored A* and A In Behaviour and Cognition (much to the disgust of his social worker who insisted he would only score C's) and Christmas eve were invited to a Multidisciplinary Team meeting with the CHC assessor. The ward sister and myself (his carer) were the only two asked to score him using the support tool, without hesitation the ward sister, who had looked after him for weeks, scored him Priority and Severe in both the top domains as did I, thinking the meeting had been a success I asked to end with a summary only to be told by the assessor (who had never met dad) that she disagreed and would not recommend eligibility to the panel. She even told us that she would go and ask for other professional advise to prove that his aggression was due to medication or his unsuitable surroundings. To finish before ranting, she insisted that he needed 24hr nursing care and that I should begin to look for somewhere immediately. I've jumped through hoops and walked backwards to do what is right for my dad, but the brick wall built by the corrupt is getting bigger, what next?

Jenny January 6, 2018 at 10:54 am

The most telling part of this is the assessor declaring your relative needs 24 hr nursing care, but not connecting that with a "Health need". If someone is so ill they need 24 hour nursing care, chances are high they have a Health Need and are eligible for NHS Continuing Healthcare (CHC). They either have no idea about CHC or are so Target-led they will do anything to avoid following Framework procedure and doing a CHC assessment. If anything, the Social Services should be helping you to shift this as a clear responsibility of the NHS. It's likely to be way outside their remit.
Worth a well crafted letter sent by Signed For to the head of the CCG or Commissioning Support Unit.

A further Top Tip is the one previously mentioned on here; Download the National Framework and Guidelines and then use the search facility as a document to look for key phrases like Managed Need, Health Need etc etc. You'll then have the relevant paragraph or page to quote.

Simon January 3, 2018 at 9:10 pm

Hi Steve,
This situation happened identically to my Father and i ( on ward 121 days), my heart goes out to you. (I am making assumptions on your Fathers condition).
Firstly, this assessors seems entrenched and it is professional pride to battle. Do not waste energy, they take orders from above.
Questions to assessor boss in CCG, Ward Manager, lead Medical Consultant. Questions are:
1. State you have serious concerns over an "unsafe discharge". Ask politely the medical professional to state in writing that the behaviour is due to the medication. Professionals are unwilling to state a medical opinion in writing, due to risk of litigation.
Medication- what reasons does the assessor have to feel the medication is the cause of deterioration in behaviour? Is it appropriate for an assessor to make clinical judgements over behaviour and mental health conditions? Will this medication be removed once in nursing home? if so why can this medication not be removed now? now can psychiatric medication be safely removed whilst in a facility with out a Psychiatrist? (GP can not do this!) Is the hospital administering medication for the benefit of the nursing staff managing the patient, rather than what is clinically in the patients best interest? If so that's illegal.
2. Does your Father have mental capacity? If not, then he definitely and legally should have a review by the Deprivation of Liberty Team (D.O.L.s) assessment. Even with 1:1 he should have an assessment (i believe). This is a team in the local council, whos purpose is to ensure human rights are being adhered to. Medicating a patient or having 1;1 for none medical reasons is against human rights. This team has legal power to sue the hospital, and the C.C.G. Either this is medically needed, or it is breaking the human rights act and you can sue. DOLS, / Office of Public Guardian are powerful.

Simon

Barry December 7, 2017 at 5:57 pm

Hello. Please can I have some advice? I have purchased Angela Sherman`s digital book. My mum is in hospital and they are starting to talk about discharge planning. They want me to attend a meeting to discuss this. I have pointed out that the NHS are obliged to carry out a NHS Continuing Healthcare Assessment. I have been told that this is not always the case and want to talk about discharge and future care needs. Any comments?

Simon December 14, 2017 at 2:30 pm

Hi Barry,
With out knowing the needs of your Mother I am not able to say, if this is needed. The key factors tend to be can she go to toilet and feed her self with out help.

Continuing Healthcare (CHC) slows the discharge process down and with pressures on beds and "bed blocking", a fast discharge is often the wards main thoughts. This is short sighted, and not patient centred, but is understandable.

I would get a good understanding of the CHC form and process https://www.gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-nhs-funded-nursing-care

The next thing to do would be to say to the person pushing for a discharge meeting probably the discharge coordinator, that you are keen to ensure that a a discharge is "quick as possible, but every one agrees it needs to be Safe to ensure that a bounce back does not take place". I personally would email this to then, or even out it in a letter. This puts it on record you are proactive and it is the ward that is causing a delay, not you. NB, Wards are fined if a patient is readmitted with in a time (think 7 days).

I would also say, that you can not see how attending a meeting with out all the information is either safe, or the quickest way for discharge.

Keith December 5, 2017 at 3:35 pm

Hi Jenny thanks for your reply. My aunt had a fall in the home about a year ago which ended up her having a half hip replacement and a broken wrist. Since then she is no longer mobile and not as aggressive. In the last few months she has become very confused not knowing what day or time it is unable to hold a conversation and is hallucinating and is double incontinent.
I see you say to refer to the framework but what parts should I be looking at? Thanks

Steve Fearnley November 28, 2017 at 4:07 pm

Hi, First time on and at wits end, please help. My 86yr old father has suffered from Alzheimer's for over 10yrs, he has lived by himself for that time and always managed with help from me (his son and carer) . His condition recently deteriorated, he has become agitated , violent and aggressive to others, also hallucinations and unmanageable paranoia . On recommendation from the Police and Ambulance service I was advised to admit him to hospital for the safety of himself and others. He is now under 24hr bedside cromer or security watch on his ward, all medical notes stress he can't be left alone, he has no idea where he is, in the past month he has been involved in three serious incidents while under supervision and is now a scared shadow of the man he was. Social workers and physiatrist absolutely refuse to even start the Continuing Healthcare assessment saying he only needs a care home, and now want proof of power of attorney (which I have) so as to start the means test. He owns a small modest house and has limited savings, it seems that's all their interested in and "Best Interests" have no relevance. Do I give in? Are they right?

Simon Lincoln December 15, 2017 at 1:08 pm

Hi Steve,
This sounds similar to my experience with my Father.
The Ward wanting to free a bed quickly. Not patient focused, but understandable with their pressures. Continuing Healthcare (CHC) delays the process.
The factor to keep in mind is, does your Father need 1 to 1 support now? (which he is getting), and will his condition improve to not needing it ?, and what treatment will be needed for that improvement to be achieved?
I would ask how the challenging behaviour would be managed safely in a place that does not provide 1:1 support, and does not specialise in challenging behaviour. (Care homes don't normally)
If 1:1 it is needed, then there is a Primarily Health need, (CHC funding), for a safe discharge all needs should be documented.
Another thing to look into is “ABC” form, documents behaviour by nurse. Ask them why 1;1 and no record of behaviour ? I think the onus is on the ward to prove there is no health need in challenging behaviour not the other away around.

Good luck, and take breaks for your own sanity .

Simon

Meggie December 5, 2017 at 11:57 pm

Hi Steve, I am so sorry for what you are going through with your Dad. You are in a similar position to the one we were in with my father almost two years ago. He was being cared for at home by family members and requiring full-time care due to changes in behaviour, aggression, confusion, delusions etc. Police and ambulance were involved and he ended up in hospital twice. On neither occasion was he assessed for Continuing Healthcare (CHC) and staff acted as though the only options were for us to carry on providing all the care he needed or to arrange a care home. Once home we had to fight for months to get a Checklist completed and when finally it indicated full assessment still nothing happened. Everyone we spoke to - social workers, nurses and doctors -wanted to discuss his finances and whether he owned his home, telling us repeatedly that the financial assessment was the most important one.
You ask "Are they right?" No, they are not right. Unfortunately "they" are the NHS and it is difficult, sometimes impossible, to make the NHS act lawfully, as you are discovering. You ask "Do I give in?" This is harder to answer. I almost gave up many times. The stress of fighting for what I knew should happen was exhausting. Was it worth it? I don't know. Probably not. We cared for Dad at home during this time and after 17 months of no assessment, no care and no funding a Multidisciplinary Team assessment was finally arranged but just before it took place his health deteriorated rapidly and he ended up back in hospital. Here doctors and nurses refused Fast Track. Once home he was Fast Tracked by his GP who believed he did not have long to live. The CCG agreed to fund our privately engaged carer but then failed to do so and we were left chasing the CCG for payment weeks after his death. The CCG ignored all our letters and were only shamed into paying my widowed mother the money they owed when I made a 300 mile round trip to raise the issue with the CCG board at a public meeting. How determined are you? Being right and knowing what should happen, what the law says, what the framework says, doesn't mean you can force the NHS to act as it should. I hope you can do what is best for your Dad. The information on this site will help if you decide to fight. Good luck.

Keith November 28, 2017 at 2:40 pm

Just had my aunts annual review who has dementia and was told she has improved as she is not as aggressive now and they are going to do Multidisciplinary Team review in 3 months any advice please?

Jenny November 28, 2017 at 9:47 pm

Refer them to the National Framework. A managed need is still a need. Look at the Care Home, GP and nursing notes and establish what interventions are made to reduce her aggressive behaviour or the risks to herself or others from it. Is she less aggressive because she is medicated? Check her MARS sheet or prescriptions from GP.
If her aggressive behaviour has subsided, consider if is she at a further stage of dementia, and how have these changes impacted on other domains and her need for care - both mental and physical health needs and the overall picture? Present a picture of the totality of her needs. Eg - is she more disengaged and seemingly "compliant"? Carers may now spend as much time encouraging her to start/complete tasks as they did fighting her, but may find this change less report worthy. You can be certain the CCG will be keen to present a snapshot of just part of her needs.

Jenny November 26, 2017 at 8:14 am

Keith, it's worth noting that you should prepare well for your aunt's annual review. It is entirely likely it will be argued that if her needs are managed they are no longer needs. Wrong.
A variation on this is when health needs become settled and predictable, usually when the condition has worsened, indicating there is less of a need. I've never quite understood this, but I know it's widely used.

Mildred Russell November 25, 2017 at 8:16 am

My aunt has dementia was sectioned to a care home due to being found in streets. Totally needs 24hr care incontinent can't wash dress herself.....yet it's costing around £3000 PM to keep her there is this right that my cousin should use his mother's savings to pay she had put by for her children's inheritance?

Angela Sherman November 25, 2017 at 6:29 pm

Mildred - The first thing that should happen is an assessment for NHS Continuing Healthcare funding - your aunt shouldn't be paying anything at all until this has been done. See the last link in the article.

Jenny November 24, 2017 at 2:16 pm

Great timing again! More and more on television and radio, and often confused and confusing. Only this week on Woman's Hour there was a very sad story of an exhausted woman caring for her husband who has Dementia and Parkinsons ,and was refused Continuing Healthcare. Plenty of potential breaches of process and policy from what I heard. The representative from [a national charity] afterwards seemed less than clear on benefits available and on charges on shared homes. I tweeted a link to this forum and contacted the programme's website. I hope they make contact.

Meggie December 5, 2017 at 9:52 pm

Hi Jenny, I share your frustration with charities and the media giving out confused and often simply wrong information about care. It happens all the time on the radio and, I've noticed recently, in articles in magazines catering to elderly and retired people. It feels sometimes as though there is a concerted and deliberate campaign of misinformation. And, as so many who post on this site would agree, it is incredibly successful. Most individuals and their families never even ask about Continuing Healthcare (CHC). Which, in my view, is how governments and the NHS want to keep it. The debate in parliament last week showed that some MPs are aware of problems with CHC but as usual the real issue was lost in comments about delays, processes and the national framework. Where were the MPs pointing out that not only is CHC inconsistent and bureaucratic but much of what happens is simply unlawful and should be stopped? The final insult to families currently struggling to get fair and lawful assessments and access to appropriate care was this statement by under secretary of state for health Jackie Doyle Price: " The guidance under the framework is quite clear on what is applicable, who is eligible and WHAT CONDITIONS ARE NOT ELIGIBLE." (I quote from Hansard). It seems even here in the House of Commons a spokesperson for the Dept of Health can't get it right. Shouldn't she of all people know that eligibility does not depend on particular conditions?

Keith November 24, 2017 at 12:41 pm

My aunt is in a care home with dementia with funding but she is reassessed every year is this correct

Jenny November 24, 2017 at 2:19 pm

Yes. There should be an initial review after 3 months, and then at 12 month intervals. Pretty pointless when people have terminal or incurable conditions with associated needs - but hey ho!
I was actually asked whether relative's dementia "had got better" by a nurse on one occasion.