17 untruths families are repeatedly told about NHS Continuing Healthcare funding
Families report all sorts of maladministration in the NHS Continuing Healthcare assessment process. Many are also told a lot of nonsense about the way the assessments and the funding works.
When NHS Continuing Healthcare assessments are carried out incorrectly, it can lead to people being wrongly charged for care. It means many people have their entire personal assets illegally taken away from them to pay for care that the NHS should be funding in full.
It’s financial abuse of a particularly disturbing kind, as the many comments people have left on this website clearly show.
Once a flawed funding decision has been made, it can take families a long time to get through the appeal process and obtain financial redress. It’s vital to be as well informed as possible as early in the process as possible – so you can fight your relative’s corner from the start.
If you’re currently going though the NHS Continuing Healthcare assessment process for a relative, read on. We’ve listed here 17 untruths about NHS Continuing Healthcare funding that families are frequently told. They’ll help you recognise and challenge false information you may be given.
17 untruths about NHS Continuing Healthcare funding
1. “You have to be receiving specialist care to receive the funding.”
This is nonsense. The qualifications and titles of the people providing your care are irrelevant; what matters is the extent of your day-to-day care needs and risks.
2. “Even if you’re eligible for Continuing Healthcare, you still have to pay for care if you have savings or a house.”
This is rubbish. Your relative’s money is completely irrelevant in NHS Continuing Healthcare. NHS care funding is not means tested, and it is not capped.
3. “You have to need more care than the care home/care provider can provide.”
This is ridiculous. If your relative needs more care than the care home/care provider can provide, then that care home/provider is not the right one! What matters – always – are the actual care needs, regardless of the capabilities of the care provider. The Continuing Healthcare process is also not an assessment of whether a person’s care is above ‘normal care provided’; that’s nonsense. If the care home can’t meet those needs, that’s a separate matter that would need to be addressed as a matter of urgency.
4. “There must be a district nurse involved.”
See point 1 above about specialist care. A person does not need to receive care from a specific person to be eligible for NHS Continuing Healthcare; if the outcome of a multidisciplinary team assessment (MDT) and the notes in the Decision Support Tool (DST) show that your relative is eligible for funding, it’s irrelevant whether a district nurse – or anyone else for that matter – is involved. What matters are the overall assessed care needs, regardless of who might be providing that care.
5. “You aren’t eligible because the care home/care provider is managing the care well.”
This statement is laughable – and yet many people are misled by this. As we’ve just seen, an NHS Continuing Healthcare assessment is not an assessment of a care provider’s ability to provide care; indeed, one would hope they are providing good care. Again, it’s your relative’s day-to-day care needs and risks that count – this is all that matters. Your relative’s money is irrelevant and the care provider’s abilities are irrelevant. It’s the underlying needs that count, as they would appear without any care in place – not the needs as they appear once they are being managed.
6. “The care you need is routine for the care staff, and so you aren’t eligible for funding.”
This is a frequent way that funding is often denied. The statement is meaningless. For example, care in an Intensive Care Unit could be said to be ‘routine’ for the care staff, and yet this doesn’t mean that a person’s care needs aren’t significant. Challenge any statement that tries to diminish needs by saying that they’re ‘routine’, or ‘stable’ or ‘predictable’. Pamela Coughlan’s needs could be described as ‘routine’ and yet it was shown – very clearly – at the Court of Appeal that she qualified for NHS Continuing Healthcare funding.
7. “The Coughlan case no longer has anything to do with NHS Continuing Healthcare.”
Amazingly, families are frequently told this. The Coughlan case has everything to do with NHS Continuing Healthcare.
8. “Even if you’re immobile, if a carer can physically move you, your assessment ‘score’ for mobility will be lower.”
This one is unbelievable. The statement here is complete nonsense. An NHS Continuing Healthcare assessment is not an assessment of a carer’s physical strength! Instead, it’s about a person’s mobility challenges and the (often significant) risks that accompany those.
9. “To qualify for NHS Continuing Healthcare you need to be having injections.”
10. “…you have to be unable to swallow.”
11. “…you need to have pressure sores that are not responding to treatment.”
12. “…you have to be on a ventilator or in a coma.”
9-12: There is no specific intervention that has to be provided for a person to qualify for NHS Continuing Healthcare, i.e. a person does not have to have injections, they do not have to be on a ventilator, they do not have to be at end of life, they do not have to have pressure sores, they do not have to be fed, they do not have to be violent, etc. etc. They may have these needs and risks, of course – but eligibility is not about any specific diagnosis or intervention. Instead, it’s about a whole picture of day-to-day needs and risks.
13. “You can only receive a Severe score in the Mobility domain if you can only move one finger.”
Nonsense. In the Decision Support Tool document, the example criteria under the Severe score in the Mobility domain actually says, “Completely immobile and/or clinical condition such that, in either case, on movement or transfer there is a high risk of serious physical harm and where the positioning is critical.” That’s not the same as ‘only being able to move one finger’.
14. “You have to be in a nursing home.”
Eligibility for NHS Continuing Healthcare does not depend on where you receive care. It can be in a residential home (without nursing) or in a nursing home or it can be in a person’s own home. Eligibility depends only on what the underlying care needs are; it is also not dependent on what care may or may not already be in place.
15. “NHS Continuing Healthcare is only for end of life care.”
Families hear this so often – and it’s not true. NHS Continuing Healthcare funding is available for any stage of life and any stage of illness/care. What matters is the extent of a person’s care needs.
16. “NHS Continuing Healthcare doesn’t apply outside hospital.”
Ludicrous. Outside hospital is exactly where NHS Continuing Healthcare applies, and the Care Act makes it clear that your relative should be assessed for this before they are discharged.
17. “If NHS Continuing Healthcare is awarded, it is only for three months, and then you have to start paying for care.”
After three months, there is a review, but this does NOT mean the funding can simply be taken away. The assessors must look at the whole picture of need (care needs and risks), and it is only if those needs have genuinely reduced below the eligibility criteria that there should there be any talk of removing the funding. Otherwise it stays firmly in place. Families report that care needs are being incorrectly played down at three-month reviews, even when there is no sign of any improvement in their relatives’ health or any reduction in care needs.
If you haven’t already read the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, it is worth doing so, as it will give you extra ammunition for challenging incorrect funding decisions and fighting your relative’s corner during assessment meetings. It’s a long document, but it’s a good idea to familiarise yourself with it. You will more easily be able to pick up on further untruths you may be told.
It’s also vital that you read the Checklist and the Decision Support Tool documents.
What other incorrect information have you been given during the NHS Continuing Healthcare assessment process?