If you’re looking for information about care fees and NHS Continuing Healthcare, read these Frequently Asked Questions first…
These are some of the most frequent kinds of questions families ask. The information about care fees and NHS Continuing Healthcare you’ll find here will help you with your own care situation.
(Remember that Care To Be Different’s primary focus is NHS funding, not the whole range of local authority payments and benefits.)
NHS funding for full-time care is called NHS Continuing Healthcare (commonly abbreviated to ‘CHC’). Many families report being given false information by the health and social care authorities when a relative first needs full time care. As a result, many people end up being wrongly told to pay for care.
NHS Continuing Healthcare funding covers 100% of the costs of receiving full-time care either at home, in a care home or elsewhere. However, the assessment process is not always straightforward and many people report having obstacles put in their way by the care authorities.
Many individuals are either ‘overlooked’ for NHS funding or their assessments is carried out incorrectly and health needs are ignored. Many are not assessed at all!
The following NHS Continuing Healthcare FAQs will give you a better understanding of your own position and what you can do to ensure your relative is properly assessed or reviewed:
“I need to know what funding my mother may be entitled to?”
Specific funding entitlement will depend on each individual’s situation. However, if a person needs full-time care and has health needs, the first thing that should happen is an assessment for NHS Continuing Healthcare funding – not a financial assessment or means-test. NHS Continuing Healthcare is NHS funding and it covers the full cost of care for individuals who meet certain criteria. Those qualifying are said to have a ‘Primary Health Need’, i.e. their primary need in terms of care is a health need. Read the Continuing Healthcare guidelines, particularly the Decision Support Tool, to find out what these criteria are. NHS Continuing Healthcare funding is NOT means-tested.
“My mother has a house, does she have to pay for her care?”
“My father’s had a financial assessment and I need to know what he has to pay?”
“We’ve been told my brother has to pay for his care because he has savings. Is this true?”
These are vital questions – and many families are given misleading information about paying for care. It is NOT a person’s money, house or assets that determine whether they have to pay for care; instead, it is their health and care needs. It doesn’t matter how much or how little money a person has – if they have healthcare needs and they meet certain criteria (as outlined above for NHS Continuing Healthcare), they do not have to pay. Read why savings thresholds for care fees are often irrelevant. Almost always, the first question the authorities will ask a person is about the person’s home or their savings. However, the first question should be about their healthcare needs. This article may also help: 3 reasons to object to a financial assessment.
“I can’t afford to pay for my husband’s care. What should I do?”
If a person is genuinely shown to have to pay for care, i.e. they are not eligible for NHS Continuing Healthcare funding, no family member or friend should be asked to pay for that care; it is only the person who needs care who should have to undergo a financial means-test. The health and social care authorities should not ask anyone else to disclose their own finances. In the case of a husband and wife or partners, this information from AgeUK may help: Paying for care if you have a partner.
“The NHS said they will only provide Continuing Healthcare Funding in a nursing home, not a residential home. Is this right?”
It doesn’t matter whether a person is in a residential home, a nursing home, hospice, other care facility or in their own home – NHS Continuing Healthcare funding is available to people who need full time care and who meet certain criteria in terms of their day-to-day healthcare needs. The type of home the person is in is irrelevant. The National Framework guidelines make this clear. Read more about Continuing Healthcare at home.
“What exactly is assessed in NHS Continuing Healthcare?”
Assessors look at health and care needs in 12 different care ‘domains’. These domains are different aspects of health and care, such as breathing. cognition, behaviour, skin integrity, continence, nutrition, mobility, drugs, etc. In stage one of the process they look at 11 domains, and in stage two they add a 12th domain, ‘Other significant care needs’. You can find our more about these domains in the Checklist and the Decision Support Tool documents.
“The social worker insists that my mum will have to pay, because she has a house.”
Sadly, many families are told that care funding depends only on a person’s money. This is quite wrong, and it leads to many thousands of people being wrongly charged for care. See above.
We’ve been told my dad can have a weekly nursing care payment, but not full funding. Why is this?”
The smaller weekly payment is called Funded Nursing Care (FNC) and it’s paid to people in nursing care homes who have some nursing needs and yet who are deemed not to meet the criteria for full Continuing Healthcare funding. However, many families report that the FNC payment is often made as a matter of routine without any assessment having been carried out for NHS Continuing Healthcare. This is the wrong way round.
“The Continuing Healthcare Assessor said that the Coughlan case no longer applies and that we can’t use it to argue our case. Is this true?”
No, the assessor is wrong. The Coughlan case is just as relevant now as it was in the Court of Appeal in 1999. These articles may help:
What’s the difference between a health care need and a social care need
“We’ve been turned down for Continuing Healthcare and we want to appeal. But how do we actually word the appeal?”
There’s a lot involved in putting together an appeal, and it’s important to pull together all relevant information about health care needs – and to do this with the Continuing Healthcare eligibility criteria in mind. Make sure you’re familiar with the different stages of Continuing Healthcare assessment and appeal – and also the National Framework assessment guidelines and funding eligibility criteria. Although this requires a lot of reading, it’s essential if you’re going to be able to defend your position. In terms of wording an appeal, you need to pull together notes on everything that has been done incorrectly in the assessment process and in the way the eligibility criteria have been applied. Also, read the answers to the following questions.
“What do I need to do to prepare for a Continuing Healthcare Assessment?”
- Read the Continuing Healthcare guidelines and the eligibility criteria thoroughly.
- Make notes on all your relative’s health and care needs and risks.
- Make notes on every failure by assessors to follow the correct process. Read the National Framework.
- Check the daily care notes kept by the care home or care provider; these are vital, and yet many families find they are either not kept up to date or they do not include information on all health needs, incidents, interventions and care provision. These tips on how to prepare for an NHS Continuing Healthcare assessment may also help.
- Be sure the assessors are looking at all the evidence relevant to your Continuing Healthcare case.
- Be aware of these 5 things to avoid in NHS Continuing Healthcare assessments.
“My father has been receiving Continuing Healthcare funding, but now the NHS is threatening to remove it. What can I do?”
Follow the same tips outlined in the question above. Also, be sure to provide information on how your relative’s health and care needs have either stayed the same or increased (if that’s the case). If their needs are the same or greater than when funding was first provided, the assessors will not be able to justify removing the funding.
“My mother has dementia and I don’t have power of attorney, and the authorities are refusing to let me be involved in her funding assessments or choice of care.”
This can be difficult. If your relative now lacks the mental capacity to make a power of attorney, you may want to apply for a Deputyship order via the Court of Protection. Although this can take a while to do, and can be costly, it could save you more headaches in the future.
“My brother has had a memory test and did very badly and we’ve been told this means the care authorities will now make all the decisions about his care. Is this right?”
This is a very common scenario, and we here from many families on this issue. Reports from families show that there is a huge lack of understanding about this amongst health and social care professionals. Many fail to understand the difference between a memory or cognitive test (such as an MMSE or an ACE-R test) and a Mental Capacity Assessment. They are two quite different things. In a nutshell, a Mental Capacity Assessment determines whether a person is able to make a specific decision about a specific thing at a specific time (such as deciding whether they want to go back home from hospital or go into a care home). Read more here: Mental Capacity Assessments – when should you have one?
“My father is in hospital but needs full time care. He’s being told the hospital needs the bed and he’ll have to pay for a care home. What should we do?”
Be sure to push for a Continuing Healthcare assessment before your relative is discharged from hospital. This article highlights what often happens when a person is in hospital and needs ongoing full time care: Why are people wrongly charged for care? The following articles will also help:
What to do if your relative is in hospital and needs full time care
5 things to check before your relative is discharged from hospital
NHS Continuing Healthcare and hospital discharge – the assessment game
“My dad’s in hospital and we’re being pressured to sign all sorts of things. Help!”
It can be a confusing time, especially as it’s often a time of crisis and emotional turmoil. Here’s an article to help you understand what kind of things you may be asked to sign – and what to do.
“My wife has to be turned regularly, she’s doubly incontinent and has to be fed. Surely she’ll be eligible for NHS Continuing Healthcare funding?”
The only way to know if a person is eligible for this is for them to be assessed for NHS Continuing Healthcare. This funding is not dependent on any specific diagnosis, but instead is based on a person’s day-to-day care needs – the whole picture of need.
“How do I get the ball rolling for an NHS Continuing Healthcare assessment?”
This article shows you how to get assessed for NHS Continuing Healthcare and what to do.
“The NHS assessor said they only provide Continuing Healthcare funding at specific care homes, and we’ll have to move our mother if we want to have any chance of funding.”
This is quite wrong. As long as the care home is able to look after a person, there is generally no reason why Continuing Healthcare funding can’t be paid – as long as a person is eligible in terms of their health and care needs, of course. We know of people in top-end care homes who receive fully-funded NHS Continuing Healthcare.
“My sister is in a nursing home and she had an assessment for Continuing Healthcare but didn’t get it. She’s been told she’ll just have to pay the full cost. Is this right?”
Even if a person isn’t eligible for full Continuing Healthcare funding, they may be able to access a weekly nursing care payment called Funded Nursing Care (FNC) – if they’re in a nursing home. This pages outlines more about Funded Nursing Care – also sometimes known as Registered Nursing Care Contribution. A person may also be entitled to Attendance Allowance and other benefits.
“There was no one from the local authority at the Continuing Healthcare full assessment meeting. They said they didn’t need to be there. But surely they are part of the assessment team?”
Indeed they are supposed to be there, and this is a serious mistake on their part. Someone from the local authority, e.g. a social worker, should be present at the full multidisciplinary team (MDT) assessment. If they are not, the local authority risks being placed in an unlawful position. Why? Because if a person’s care needs are above the legal limit for local authority (means tested) care – and yet the NHS has effectively passed responsibility to the local authority AND the local authority did not question that – the local authority may have broken the law. Read more about this legal limit for local authority care.
Should social workers be involved in NHS Continuing Healthcare assessments?
“My father got through the Checklist assessment for Continuing Healthcare, so surely he should now receive full funding?”
The Checklist is just the first stage. If a person gets through this, they go on to have a full assessment involving a multidisciplinary team (MDT). Read more about the different stages of Continuing Healthcare assessment and appeal.
“The assessor told us we were not allowed to speak during the assessment, and could not be present for most of it. Is that correct?”
No. Families should be involved and their input should be taken into account. The National Framework guidelines make this clear.
“I’ve been waiting ages for a decision on my retrospective care fees claim, and I’ve just heard that it’s been thrown out. What can I do?”
Make sure that it’s been reviewed properly. These tips on retrospective claims will help.
“We’ve only just heard about Continuing Healthcare funding and yet our mother has been in care for several years. What should we do?”
If your relative is already paying care fees, and yet has never been assessed for NHS Continuing Healthcare funding, ask for a Checklist assessment as a matter of urgency. Also ask the NHS Continuing Healthcare team at the local NHS why this hasn’t happened before. You can also ask the care home manager or care provider or a social worker why this hasn’t been done before. In terms of making a retrospective claim, you can generally now claim for just one year. However, if you were never told about Continuing Healthcare – or you were not told how to appeal after the funding decision last time – you may have grounds to claim further back. You could argue that the care authorities failed in their duty to provide accurate information. Equally, if you were deliberately misled at the time about care funding, the health and social care employees you dealt with may well have been negligent in their professional duty. Plus, the local authority may have broken the law when it effectively took responsibility for care and asked the person in care to pay. (See above.)
“I asked for a Continuing Healthcare assessment for my mother but was told it’s not worth it because she wouldn’t get it. Is there anything I can do?”
This is a very common problem, and many families are told ‘not to bother’. However, the ONLY way to know if a person will be eligible for NHS Continuing Healthcare is for them to have an assessment. It’s as simple as that. Here are just some of the things families are told to put them off having a Continuing Healthcare assessment.
“I’m confused about all the different assessments. Can you clarify?”
Yes, here’s a summary of some of the assessments related to long term care.
“We’ve been told it’s very difficult to get Continuing Healthcare and that the scores our dad needs are almost unattainable. Is it worth it?”
We know of people who have succeeded in getting full NHS Continuing Healthcare funding with relatively low assessment scores, and others with significant needs who have to battle all the way. It can be a postcode lottery. However, the Continuing Healthcare guidelines cover the whole of England, and all assessors should abide by them.
“The care home manager told me that there are people worse than my mum in the care home and they don’t get any funding – so neither will my mum.”
Again, this is sadly very typical. A Continuing Healthcare assessment is not a comparative exercise. It doesn’t matter what anyone else’s care needs are. If a person has health needs, they should be assessed fairly – as an individual – regardless.
“I don’t know if my grandmother has been previously assessed for NHS Continuing Healthcare. How can I find out?”
Contact the NHS Continuing Healthcare team at the local Clinical Commissioning Group (the local NHS) and ask them to provide you with paperwork to show when, if ever, your relative was assessed. Clinical Commissioning Groups (CCGs) replaced the Primary Care Trusts (PCTs) in 2013. If you contact the main switchboard of the local CCG and you’re told they don’t have a Continuing Healthcare department, keep persevering. It’s not unusual for main reception staff not to know about Continuing Healthcare. Every local CCG has a Continuing Healthcare team. Read about some of the problems in getting to the right person.
“We’ve been asked to pay top up fees, but this is making life very difficult for us. Do we have to pay them?”
This is a very common question from families, and top up fees are often controversial. This article will help – including the excellent report from Independent Age.
“The care home doesn’t seem to want to help us get a Continuing Healthcare assessment done. Is there any reason for this?”
It could be various things, but there is also a financial conflict of interest for care homes, unfortunately; they receive more money from people who pay for themselves (‘self funders’) than they do from the NHS through NHS Continuing Healthcare funding. We’ve heard from some families that care home staff and managers have tried to put people off applying and that staff can be less than helpful in the actual assessment process. Care staff may also not know anything about Continuing Healthcare. Make sure the daily care notes are up to date.
“I’ve discovered that my mother was previously assessed (and turned down) for NHS Continuing Healthcare, but I knew nothing about it. What can I do?”
Write to the Continuing Healthcare Dept. at the local NHS Clinical Commissioning Group (CCG) with a certified copy of your power of attorney (or other form of authority) and request copies of all Continuing Healthcare assessments carried out to date with the full rationale for the funding decisions. Also, state that these assessments should have been carried out with your full knowledge and involvement. You can ask for the assessments to be done again.
“We’ve just succeeded in securing Continuing Healthcare for my mother. When will the funding start?”
It should be backdated to shortly after the date of the Checklist. The National Framework guidelines in Annex F make this clear. Also, read more about the other forms of NHS redress in Continuing Healthcare – and what the NHS should pay. If you’ve been told that funding will be awarded, but then the funding decision is overturned, this article will help show whether the CCG is acting correctly.
We hope these NHS Continuing Healthcare FAQs have answered a lot of your questions. If you do still need one-to-one advice, though, for your specific situation, we may be able to put you in touch with a legal, financial or care funding professional to help you. But it’s worth looking through the above links first, as the information they contain could save you paying for advice – and save you paying for care.
