Local protocols in NHS Continuing Healthcare
Have you been told by your Clinical Commissioning Group that they can override national Continuing Healthcare guidelines?
Families report being given all sorts of incorrect information by the care authorities about what happens during the Continuing Healthcare assessment process.
We also know of cases where families have been told that:
- the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (the national guidelines) doesn’t apply in their area
- that their Clinical Commissioning Group (CCG) – the NHS – has ‘opted out’ of the National Framework
- and that the local CCG has replaced the National Framework with guidelines of their own.
So can a Clinical Commissioning Group override national Continuing Healthcare guidelines and case law?
No. The National Framework does make provision for CCGs to draft their own local protocols, BUT this is simply about applying the National Framework locally. It does not give a local CCG a means to replace the national guidelines.
So if you’re told that in your local area the Continuing Healthcare rules are different, challenge this immediately.
Page 137 of the National Framework looks at Local NHS Continuing Healthcare Protocols (Annex G), and it’s interesting to note the following:
- Nowhere does it say that local protocols replace national guidelines or case law.
- Any local protocols must still transparent and lawful. This includes providing access to Continuing Healthcare based on need, not on financial considerations. This means there can be no cap on Continuing Healthcare payments; Continuing Healthcare covers all assessed care needs.
- You must be kept informed and involved at every stage of the NHS Continuing Healthcare assessment process.
- Any local protocol must uphold the principles of consent and compliance in relation to the Mental Capacity Act.
- CCGs must show you how to access advocacy, advice and information.
- You should be informed of the outcome of Continuing Healthcare assessments in writing and given a copy of the assessment notes, e.g. the Checklist
- CCGs must act on a Fast Track assessment without delay.
- If your relative is being discharged from hospital, CCG remains responsible for funding care during the Continuing Healthcare assessment and decision making process.
- The CCG must make arrangements for the local authority to be involved. (Indeed, the local authority has a vital role to play in the Continuing Healthcare process.)
- There should be a dispute resolution process in cases where you are unhappy with the outcome of an assessment .
There are of course many additional points mentioned in Annex G than we’ve listed here, but it’s worth keeping the above in mind, as you may be given incorrect information by your local CCG.
We also know that there are CCGs currently promoting the following:
- That patients in hospital only need a Continuing Healthcare assessment if their needs have a clinical origin. (Note: the National Framework actually states very clearly that needs do not depend on any specific diagnosis; it’s the day-to-day needs that count – regardless of how they arose.)
- That patients often improve considerably once discharged from hospital and so assessing for Continuing Healthcare in hospital results in costs to the CCG that could otherwise be saved. (Note: It’s difficult to see how many older people going into care will improve considerably.)
- That people should be means tested on discharge from hospital and assessed for NHS Continuing Healthcare later, when they are ‘in the community’, as this will save the CCG money.
- That the Checklist is ‘unreliable’ so shouldn’t be carried out in hospital.
…amongst other things!
Needless to say, this flies in the face of the Care Act and the whole principle of looking properly at who is actually responsible for paying for care from the start.
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I should have updated my post earlier, sorry for the delay, but I was waiting for the payment. Anyway, as you may have guessed the Health Authority folded and paid up! They had been caught out, but didn’t admit that of course. They just revised the gradings and said that it now qualified. It only goes to show, if you dig deep and find something don’t ever give up. I wish everyone else fighting for justice on this post all the luck for the future.
My father suffers from lewy body dementia has been in receipt of Continuing Healthcare (CHC) funding since Jan ’15. Yesterday we had a “Care home review assessment” and the meeting ended with an unexpected and rushed CHC checklist (not a full Decision Support Tool – DST), which despite the assessors playing down his needs throughout the meeting and concentrating almost exclusively on challenging, violent behaviour, the checklist still resulted in a positive result on two counts – Two A’s, four B’s and 5 C’s. Worth mentioning that our view of the needs was higher still.
We were then told by the Community Psychiatric Nurse co-ordinator that she would need to take advice from a friend and colleague in CHC, as regardless of the positive checklist, she did not believe that my Father’s needs warranted CHC funding and she needed advice on how to play it! In other words, how to deny funding.
We were then told that he should not have got CHC funding in the first place (previous full DST = 2 x severe, 2 x high, 2 x moderate, 3 x low) and as there was little left in the money pot, there were many other people more deserving than him.
No consideration of family input, needs in their entirety, his continued deterioration, the local authority legal limit or effect if care was not provided (as set out in the Checklist). We are left feeling bullied and hopeless.
KD ask them to explain what they mean by the money pot. There is no legal basis for rationing CHC on financial grounds.
Another approach is to write to the Head of Adult Care at the local authority and state very firmly that the local authority may now be in an illegal position by not addressing their own legal limit for care: http://caretobedifferent.co.uk/nhs-continuing-healthcare-should-social-workers-be-involved/ In addition, use the Care Act to highlight the NHS’s failings to properly uphold the result of the CHC assessment: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/ Keep going if you can.
Hi, I have just come from a local appeal where the Decision Support Tool (DST) done by the multidisciplinary team (MDT) had strongly found that a primary health care need applied and that Continuing Healthcare funding should be granted. After the patient passed away 4 months later, the CCG downgraded two domains and denies funding. When I raised PG41 of the NationalFramework at the appeal that states that the CCG can only change a DST decision on certain exceptional grounds, the chair said that they had opted out of that because of training problems and told me to move on. Luckily I have it all recorded. I believe they can’t opt out and its a load of rubbish. I am now waiting for the 14 days appeal result letter with interest. I would be very interested if anyone else has had a similar experience in case we need to take it to the next stage.
Could you help me on ex gratia payments and backdated payments please? I understand that CHC, if awarded, is paid from day 29 after the Checklist is received by the CCG para 95 National Framework – although Para 34 of the DST document just says the decision should be made within 28 days.
What happens in cases where a request for a CHC has been made, but no Checklist done for many months? Surely if eligible the CHC should start much earlier than the date on which the Checklist is received or it just encourages the CCG to delay starting the process?
I can only find mention of ex gratia payments at para 13 Annex F of National Framework relating to Unreasonable Delay.
Hi Jenny – the guidelines say that the Checklist should be completed within 14 days of referral, so if you have the date of the referral/request, that will give you some leverage. There should be minimum time between the Checklist referral and the actual Checklist assessment, and if there is a delay the CCG must justify it in writing. You’ll find more on the checklist on pages 69-70 of the National Framework and also of course the main section on the Checklist starting at page 25. You may also find the link above helpful in my response to Andrew.
How often do CCGs refuse to reimburse individuals the actual amounts that they have paid in care home fees when a final decision is issued recommending that someone was eligible for a previous period of care and should not have paid for that period of care?
I understand that there can be disagreements on the amount of interest payable (which apparently is calculated according to the average retail price index rather than the interest rate the courts use (8%)). But in this instance I am talking about the actual amount paid out to a care home.
Do CCGs ever try and pay significantly less than the actual amount they must reimburse an individual (putting interest to one side for the moment)?
And if so, are there any helpful tips and tricks (without having to take them to court) for encouraging CCGs to pay as a minimum the principal amount owed in full?
Sorry for the late reply, Andrew. In my own personal experience, the NHS did try to pay less than was owed. In my case, a solicitor’s letter eventually sorted that out. You may find the NHS’s own guidance helpful to wave in front of them – see the link in this article: http://caretobedifferent.co.uk/continuing-healthcare-redress-2/
Thank you very much Angela.
I have another couple of questions if I may please on this topic.
Where someone has been granted NHS Continuing Healthcare which has been backdated, is it proper and reasonable to claim reimbursement for items such as:
Dental care?
spectacles?
podiatry/chiropody?
Continuing Healthcare (CHC) covers all assessed care needs, so if a person requires things that relate directly to the assessed care needs specifically, these can be covered. It would be reasonable to assume, for example, that a person who is immobile and/or at risk of muscle contraction, etc. should have physiotherapy included in their Continuing Healthcare package, Indeed, I have seen this funded through CHC.
I understand HM Government, unde the auspices of HM Principal Secretary of State for Health, has invited England’s clinical commissioning groups to revise the National Framework again. The revised National Framework is scheduled to come into force in the “nearish future.”
Of course stakeholders and other interested will be consulted and their views “considered” on any changes to the guidance by which NHS Continuing Healthcare is decided.
However, the cynic in me thinks the reality will be a new guidance document, and decision support tool, which will attempt to make even more people who according to the law would be considered to have a primary health need so that HM Government and the CCGs can reduce significantly their current NHS CHC annual spend of £2.5 – £3 billion.
How much more absurd will the domain scores become after the CCGs have “reimagined” the decision support tool and National Framework?
It’s a good question, Andrew. Time will tell…
Further to my post of 2 days ago, I have now seen the home. It is about an hours drive away. The home looks all
right but my husband’s room is small and dark. Matron and ward sister seem nice. There are other rooms vacant so I might try to get a better one for my husband, but his vision is very limited and that might be the reason he has been given a dark room, but I will be sitting there for 2 or 3 hours a day and I would like it lighter. Of course there are extras to pay for. For instance a nice chair for him and possibly a wheelchair so he can go in the garden on a fine day.
After some meetings and a letter I am cautiously optimistic as I think I am going to receive about £850 per week towards my husbands care in a nursing home. The hospital is being pushed to free up some beds, and as my husband has been there or about 9 months he has been found a place in a home some miles away. It is quite far and it’s CCQ is not excellent but he will be placed on a list for somewhere nearer.
Unfortunately this has come as a surprise and I am due to go abroad for a weeks holiday. I won’t be able to even settle him into the home. I am a bit upset about this but everyone assures me that because of his advanced dementia and blindness that he won’t know he has been moved.
In my meeting which was at 3 hours notice I was able to argue his case for full funding and also quoted the Coughlan case, thanks to Angela’s excellent book.
Let’s hope it’s a positive outcome, Annette – and thank you for your very kind words about the book. Remember that Continuing Healthcare should cover all assessed care needs: http://caretobedifferent.co.uk/what-should-continuing-healthcare-funding-cover/
I have come to the conclusion that the NHS can do what they want when they want and you have very little chance to get anywhere when they are determined to stop you. I am currently trying to find carers to meet my husband’s needs following a new Care Act assessment. The chair of the CHC panel requested this so I can provide better evidence for the CHC. I need help getting him up and getting him ready for bed. No agency can help so far even though he will be funding this himself. The only way I can see at the moment is to pay for live in care.
*Can* they override national guidelines? Good question, especially if it’s framed as “Is it possible for CCGs to get away with changing or ignoring the national CHC guidelines?” as opposed to “Are they legally allowed to?”
Unfortunately, it appears that, in some cases, the NHS CAN with impunity, choose to ignore the guidelines, if they are not held to account. The mechanisms in place for doing this seem to rely on individuals trying to fight their corner. Those individuals are often least well placed to challenge miscarriages of justice, because of their responsibilities for looking after other relatives. The police will not get involved even when fraud takes place, as the law allows the NHS to be its own judge and jury …..
SAndy. Have a look at section 92 of the 2014 care act. This makes it a criminal offence to disseminate information that a CCG is expected to disseminate, if that information is false in a material respect. There is a defence. However, that would be to admitting a procedural error in many cases. Have a look. Then apply it even to the point of stretching the point to fit.
It would be wonderful to expand and explore this point of fact to all parts of Northern Ireland where family members making enquiries regarding NHS Continuing Healthcare are told that such provision does not exist
Any thoughts/experiences from fellow NI readers (or others) would be greatly appreciated
Hi Sharon – yes, Northern Ireland seems the very poor relation when it comes to Continuing Healthcare. As far as I’m aware the funding does exist but there are no ‘National Framework’ style guidelines. I’m not an expert on CHC in Northern Ireland, but could this page from AgeUK help perhaps: http://www.ageuk.org.uk/northern-ireland/for-professionals/health-social-care/continuing-healthcare/
Thanks very much for this. I was aware of the report – it is excellent although reading it made me feel even more frustrated as there seems no reason why Continuing Healthcare should be denied, and yet it is. I received a letter from the health board in my mother’s case saying ‘we do not provide this in Northern Ireland’. I intend to make contact with the report authors to see if there have been any further developments and to consider if there is a way in which we could garner support and pursue things further. I think lots of people in Northern Ireland would be very concerned if they knew about this inequity of service within what is after all the same National Health Service as England, Wales and Scotland.
Sharon
Very interested in contacting you to discuss the denial of continuing health care in northern Ireland as I am fighting a trust who repeatly refuse to carry out an assessment to determine my mum’s primary need