10 misleading statements about care fees

10 misleading statements about care fees

10 misleading statements about care feesDon’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).

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.

14 Comments

  1. Barry 4 days ago

    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?

  2. Keith 6 days ago

    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

  3. Steve Fearnley 2 weeks ago

    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?

    • Meggie 6 days ago

      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.

  4. Keith 2 weeks ago

    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 2 weeks ago

      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.

  5. Jenny 2 weeks ago

    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.

  6. Mildred Russell 2 weeks ago

    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?

    • Author
      Angela Sherman 2 weeks ago

      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.

  7. Jenny 2 weeks ago

    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 6 days ago

      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?

      • Jenny 4 days ago

        Woeful. Perhaps Jackie Doyle Price should receive plenty of contact by email, Twitter and letters to educate her on The National Framework and relevant Case Law? I’m sure her contact details are readily available.

  8. Keith 2 weeks ago

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

    • Jenny 2 weeks ago

      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.

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