10 misleading statements about care fees
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.
My aunt is in a care home with dementia with funding but she is reassessed every year is this correct
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.
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?
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.
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?
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?
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
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?
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?
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!
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?
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.