3 points from NHS Continuing Healthcare guidance you may not know

3 points from NHS Continuing Healthcare guidance you may not know

3 points from NHS Continuing Healthcare guidance

And, All and Full – 3 powerful words to help you in NHS Continuing Healthcare

We’ve mentioned in other articles just how important it is to read the NHS Continuing Healthcare guidelines before you go through the Continuing Healthcare assessment process and when you’re appealing a funding decision.

It’s easy to miss certain words that can actually help you a lot when arguing your case. We’ve highlighted 3 of those words for you here.

They relate to the Decision Support Tool – the form that assessors complete (with your input) during the full multidisciplinary team (MDT) assessment. (The MDT is stage two of the process.)

You’ll find the Decision Support Tool on this page of the gov.uk website.

3 points from NHS Continuing Healthcare guidance

1) Decision Support Tool, page 9, paragraph 7:

“Once an individual has been referred for a full assessment for NHS continuing healthcare (by use of the Checklist or, if this is not used in an individual case, by direct referral for a full assessment for NHS continuing healthcare) then, irrespective of the individual’s setting, the CCG has responsibility for coordinating the whole process until the decision about funding has been made AND a care plan has been agreed.”

In other words, part of the purpose of the Continuing Healthcare assessment is to ascertain what the whole picture of care needs looks like – what is needed and how that can be put in place. The NHS has a duty to ensure that your relative has the correct care – not just the correct funding – and of course the funding must cover all the assessed care needs.

2) Decision Support Tool Glossary, Page 50, last paragraph – regarding NHS Continuing Healthcare at home:

“…where a person lives in their own home, it means that the NHS funds ALL the care that is required to meet their assessed health and social care needs.”

We’ve written before about receiving NHS Continuing Healthcare funding at home, and the NHS’s own guidance makes it very clear that the funding must cover all care needs, regardless of where a person actually receives their care.

3) Decision Support Tool Glossary, page 50, last paragraph – regarding NHS Continuing Healthcare in a care home:

“In care homes, it means that the NHS also makes a contract with the care home and pays the FULL fees for the person’s accommodation, board and care.”

We’re increasingly hearing accounts from families that Continuing Healthcare funding is being ‘capped’, i.e. families are being told that the NHS will only pay a certain amount towards care, but not all of the care fees. As clearly shown in Continuing Healthcare guidelines. this is just plain wrong.

In addition, no one should be asked to ‘top up’ Continuing Healthcare – and the care home shouldn’t ask you either! The NHS has a legal duty to cover all the costs, and the contract for the funding is between the NHS and the care home. The fact that a person is in receipt of NHS Continuing Healthcare means that their care is beyond the limits of local authority care – and tops ups are for local authority care only.

Can your local Clinical Commissioning Group (CCG) override national Continuing Healthcare guidelines?


  1. Francina 2 years ago

    A family member made an official complaint to the CCG about their Continuing Healthcare provider in March. They finally received a reply last week. The reply report was jointly written by the CCG and the provider they complained about. Is this correct? Naturally, the provider defends all their actions and blames 3rd party agencies for the errors.

  2. Rachel Keetley 2 years ago

    I work in palliative social work and I am increasingly hearing of nursing homes that are charging clients a ‘lifestyle choice’ payment over and above the fees which NHS Continuing Healthcare pay to the nursing home. To my understanding this is not legal as it is in essence a top-up, but the local Commissioning Support Unit seem to be condoning it now. Any thoughts?

    • Angela Sherman 2 years ago

      Rachel – we are hearing a lot of that too. To me, it’s an illegal top ‘by the back the back door’. (Continuing Healthcare is the responsibility of Clinical Commissioning Groups (CCGs), not Commissioning Support Units. All decision making rests with CCGs.)

      • Denise 5 months ago

        From Denise: This has happened with my mum at her care home earlier this year. The CCG have said I have to pay it. Nothing to do with them at all. One element is a £100 per week charge for the choosing the home “which provides the care you are looking for”. Disgrace.

  3. Rebecca Ganz 2 years ago

    Hi Chris – thanks for that. Very helpful. If you push, how likely are you to jeopardise the 50% funding being recommended? Also, my gut is to get that ratified and then push hard. Any thoughts? Really appreciate the help as it’s such a challenging area. Becks

    • Angela Sherman 2 years ago

      Rebecca – if you’ve got the joint funding offer in writing then you can come back to them with that if they try to withdraw it. Chris’s point is good – and many families feel that joint funding is often suggested by assessors as a way of denying full funding, even when a person’s needs are beyond a local authority’s legal remit. There’s a section in the National Framework on joint funding. Be sure to appeal your case if you disagree with anything that’s been done so far: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/

      • Rebecca ganz 2 years ago

        Thanks for that. Please could you clarify your meaning on ‘you could come back to them with that.’ I will look up joint funding in the national guidelines. That’s great to know I can do some research. The review has been well run so far in part due to the level of work by family to push ratings of domains in 2 MDT meetings. Thank you for your help. Becks

  4. Rebecca Ganz 2 years ago

    Hi there. We just had a 2nd Multidisciplinary Team (MDT) meeting as some evidence was needed. They are recommending joint funding of Continuing Healthcare (CHC) and the Local Authority. I’m hunting any useful information or hoping for any guidance about how this might work. Also, if they have seen the need for joint funding, how likely I might be in going for full funding as we are half way there….or if you ‘push it’ are you more likely to lose the funding you’ve already achieved (subject to ratification by the CCG). Thanks for any help, Becks

    • Chris-G 2 years ago

      Push for full finding. If the nhs is prepared to part fund, then they must have found a reason…… That only reason is the Primary Health Need (PHN) that the whole malarkey is designed to discover. There are no grades. It is a PHN or it is not and only then is it the council ‘s duty to act and then charge for care. Also, bear in mind that the savings and assets rules will still apply even if the council only provides 10% of the care…… In many cases a 50\50 split will still cost the patient several hundred pounds a week…… Don’t fall for the smiles and assurances.

  5. Denis Lockhart 2 years ago

    Thank you for reply concerning Christina. Your advice most helpful- no DLA will be lost as long as I am caring for her at home. I will now save more than £300 per month care costs.

    Best wishes


  6. Denis Lockhart 2 years ago

    I am a full time carer for Christina, who suffers from advanced Parkinson’s, Lewy body dementia, incontinence etc. Thanks to your articles on the internet I applied for Continuing Healthcare (CHC) funding, and received confirmation of the award today. Thank you for your advice and information. However the letter says contact the Pensions Advisory Service to inform them. Does that mean that deductions will be made from her DLA to compensate?
    Many thanks
    Best wishes

  7. Kay 2 years ago


    My father has vascular dementia and is in a nursing home. My mother was caring for him for several years after his diagnosis but due to a very aggressive episode we had no option than to call the NHS for advice, during late evening. In essence they said “wait until the morning or call the police and have him arrested”. To cut a long story short he was admitted to hospital and then into a Nursing Home.

    1 I had to fight hard just to get through the initial checklist stage and due to my persistence and the lack of agreement between me and the Community Psychiatric Nurse carrying out the checklist, in the behaviour category, a full assessment was carried out.
    2 The social worker said that dad passed the Coughlan Test yet the CCG said that dad was not eligible for CHC funding but he was eligible for the Nursing Care element. Unfortunately the social worker could disagree with the findings but could not overturn the decision; only the family could appeal as dad did not have mental capacity. I didn’t appeal on that occasion – it just seemed a mammoth task and you think that they must know what they are doing ????
    3 Jump forwards and we have recently had our 3rd assessment but appealed the decision of the 2nd one just in time and said that we were appealing the 3rd one also as each one has confirmed ineligibility.
    4 I set out a reasoning email and said that if a Local Resolution meeting was to be convened that I would wish to present a more thorough and robust appeal document.
    5 The local CCG have suggested another assessment by means of Local Resolution. My feeling is that if I agree to another assessment now, that will just start the clock ticking again for another appeal (assuming their assessment will be the same as previous ones) and will not indeed be an actual continuation of the original Appeal against the decision made on 7 January 2016.

    Question: Should I decline the offer of a further assessment and request a Local Resolution meeting to consider the facts from both the January and July assessments?

    Many thanks


    • Angela Sherman 2 years ago

      Kay – the NHS suggesting that the police arrest your father sounds truly shocking. The local dispute resolution meeting should address the previous assessment, not start a new one. If you succeed in your appeal, funding should then be backdated to shortly after the original Checklist; if you agree with a new assessment, however, funding would only be backdated to the start of this new process. So it sounds as though there are strong financial motivators in what the CCG is telling you – and that is not acceptable.

      • Kay 2 years ago

        Thank you Angela. I have confirmed to the local CCG that I wish the Local Resolution to take the form of an appeal against the original decision and have suggested that the social worker and either the manager or the deputy manager of the care home be present. During the last assessment process, after only spending 5 minutes with my father and having a quick look at the file, the assessor downgraded one of the domains post visit, against the professional opinion of both the manager and deputy manager who were both present.

        • Kay Taylor 2 years ago

          I have been contacted by the local CCG to confirm that the local resolution meeting will be between me (as Attorney) and the Continuing Healthcare Team Manager. I have been given 2 weeks notice of the date and time of the meeting which will allow me time to prepare my case!

  8. Cheryl carrington 2 years ago

    my son has multiple complex needs and has been receiving CHC funding for 3 yrs.he is 25 yrs old.
    He lives at home with his family with the help of carers.
    He has a respite element in his funding and we have always had to find the respite ourselves because they don’t have anywhere local that can met his needs .
    This means we usually get respite by sending him with carers to a disabled caravan or similar.
    When they reviewed his careplan recently they said he will still receive respite In his budget but we have to pay for the travel costs to get him there and back and they also said they no longer pay for his food while at respite either. This means if we as his parents can’t find this cost we won’t get any respite.
    They had paid for the total costs for the first three yrs of funding and the only reason I was told was simply that they don’t do that now .
    Is this right????

    • Angela Sherman 2 years ago

      Cheryl – that sounds hugely frustrating. If the CCG has reduced funding in any way, they must be able to show how this relates to your son’s care needs – not to their budgets. If the CHC funding has been reduced, the CCG should have carried out a proper review, at which the whole picture of your son’s needs should have been considered (with your involvement and input) and your son’s needs should have been reviewed in line with the CHC eligibility criteria, as before. They should have referred to the previous CHC assessment notes too. Ask the CCG for their written rationale as to how exactly they believe your son’s care needs have reduced below the level of full funding.

      • Chris-G 2 years ago

        A further thought. My relatives get their entire care including meals paid for in their nursing home because they are sick enough to qualify for CHC. Likewise patient transport is required if they have to leave the home for hospital etc. I don’t see much of a difference and the cost in your case is not 365 days a year….. I would be inclined to argue that CHC is supposed to provide for all of the patient’s needs and if required then respite seems valid….. After all, the patient might need time away from their sole or primary carer, as much as the carer might need a break.

  9. Trish Mason 2 years ago

    My mother who has dementia had a stroke and has been in hospital for 11 weeks and has just been transferred to a nursing home, as she has completely lost her sight due to the stroke. we applied for CHC and after a battle received it they are now saying they will review after 28 days as she requires one to one care due to her blindness and other health problems. we think they will try and withdraw the CHC as they didn’t want to pay in the first place, but luckily we knew all about funding. is this correct they can reassess so soon, we thought it would be 12 weeks

  10. Aleisha White 3 years ago

    Hi Jenny, if your relative does have to move (and this should only be because the current care home has stated that they are unable to manage the care needs – not because they are funded by CHC!), the nursing home will visit and carry out their own assessment of care needs.

  11. Sharon 3 years ago

    Can someone please give me some guidance.
    I am going through the process of a retrospective CHC assessment for my late Grandfather. Its a long story and the assessment should have taken place whilst he was alive but the NHS failed to follow up on the application and the family were not informed that an application had been made by the care home. Therefore, is there anyone who has been through this process who can help – to ensure that my late Grandfather receives a fair and accurate assessment.

    • Angela Sherman 3 years ago

      Sharon – there are lots of people commenting on our website who have been through a similar situation. Keep chasing the CHC team for progress on your retrospective claim. The failure by the NHS to follow up on the previous funding assessment process should not be used against you in your case. It is their failing. Make sure you see a copy of any ‘Needs Portrayal;’ document that the retrospective team produce and that you are given the opportunity to comment on it.

  12. Jenny 3 years ago

    Geoff, I do think that is the best course of action. If her condition has deteriorated significantly, then do everything you can to evidence this to show that she is beyond the remit of Social Services for her care, and that she should get NHS funded care – without top ups payable. get records from the care home and her main day time carers onside ready to show what help she needs. I can’t recommend this forum and the ebook highly enough to help you prep for that.

    Sorry to nag; Can anyone help me with their experiences of obtaining a post CHC agreed Care Plan? Should this come with the eligibility letter? Without it, I’m struggling to know exactly what care my relative needs, and why the CCG are keen to move him when the Community Nursing team could perhaps do what is required. If I need to find a nursing home they will surely need the agreed care plan? I’m curious, as a move to a nursing home would likely be more expensive than his current care home.

    • Angela Sherman 3 years ago

      Thank you for your kind words about the blog and the website, Jenny. A care home should have a care plan in place for every resident (nursing or otherwise). If a person is receiving CHC then the NHS is responsible for funding their care, and the CHC assessment process identifies the care needs that any care provider will need to manage. The care provider must be able to show you a care plan, and the NHS – being responsible for your relative’s care – must make sure this is in place.

  13. Geoff Wingar 3 years ago

    She was assessed several years ago but her condition has deteriorated significantly since then. When she was assessed funding was denied. I will contact The NHS and see if I can get her assessed again – would that be the correct course of action?

    Thank you

    • Angela Sherman 3 years ago

      Yes – that’s what you need to do.

  14. Lucy Fryer 3 years ago

    PS. Our elderly relative has been physically healthy for several weeks and yet has been mouldering in the hospital for two months now!

  15. Lucy Fryer 3 years ago

    Our elderly relative suffers from dementia and needs full-time supervision. She was admitted to hospital recently with an unrelated ailment from which she made a full recovery. Whilst she was in hospital, I insisted that the staff carry out an NHS Checklist process. I made sure that I, my husband, the hospital social worker, and the manager of our relative’s day care centre were present at that Checklist assessment. We prepared well and the result of that Checklist process was two “A” grades – cognition and behaviour, so I assumed that our relative would now be put forward fir an NHS CHC assessment. The hospital social worker signed the Checklist. However I noticed that she had been unwilling to do a Checklist at all and was clearly unhappy about the resulting grading. I have been waiting for a date for the CHC assessment, and have been refusing discharge for our relative until it’s been done. I now discover (six weeks later!!) that the social worker has never forwarded that Checklist on to the NHS CHC team. She now says she wants to do a NEW Checklist which reflects our relative’s behaviour in hospital. I suppose this could work in our favour, but actually, I think she wants to redo it so that our relative is NOT then eligible for a full assessment.
    Can you give me any advice on how best to proceed with this?

    • Angela Sherman 3 years ago

      That sounds very suspicious on the part of the social worker, Lucy, and I can understand your view about this. Your relative should have been put forward for a full assessment immediately, and he/she should not be asked to pay any care fees until this whole process is complete. If he/she is moved to a care home in the meantime, the NHS is responsible for the care fees until a proper CHC decision is made. Make a complaint to the CHC team and also contact the Head of Adult Care at the local authority, as they are potentially in an illegal position now on account of the failure by the social worker to follow the correct process: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/

  16. Geoff Wingar 3 years ago

    Thanks Jenny and Chris. My Mum is below the threshold. The Top Up is being paid by my Mum (rather through me) at the rate of 189 pounds per week – about 5 pounds over what she actually receives in pension. Funded Nursing Care pays directly to the home at 112 pounds per week. The local Authority pays the difference. I should point out that I negotiated a rate of 700 pounds per week with the private care home where she now resides. This rate is substantially less than they would normally charge. I have always been aggrieved that they take more than she actually takes in pension but I have been told that this is normal? I have been quite happy as it is better that the 3,800 pounds per month that she was paying directly – until the money ran out.

    Any advice if this is correct would be very gratefully received.

    Thank you, Geoff

    • Angela Sherman 3 years ago

      As Jenny says, a decision about FNC is only made after an assessment for CHC.

  17. Geoff Wingar 3 years ago

    My Mum has funding from a Local council who in addition take all her pension plus few pounds every week as “top up” so that the weekly agreed amount can be met with the care home. The care home also receives 112 pounds a week from Funded Nursing Care.

    Should this Top up as outlined above be paid by my Mum and since the funding is coming from a local authority and not The NHS – or are they one of the same?

    Any help here is appreciated.

    • Jenny 3 years ago

      Geoff, I’d consider asking for a CHC assessment. FNC should be awarded after a full assessment has been done, and when a primary Health Need wasn’t found, but there are nursing needs. So, I’m guessing she’s on shared funding at the moment, which would make the top ups from her pension lawful. If it’s been some time since she was assessed I’d be looking to make a case for fully funded CHC, and at least that way she’d still keep her pension.

      The help you’ll get from this forum and from Angela’s excellent ebook will certainly help you.

    • Chris-G 3 years ago

      Geoff, who is paying the so called top up ? If it is for hair dressing and the like then that is understandable because your mum should be being left about 24 quid a week from her pension to fund that. If her savings are below £14,300 or so, then the council should not be taking it from that as far as I am aware….. Anyone else got any thoughts?

    • Angela Sherman 3 years ago

      Geoff – your mum shouldn’t be paying the top up herself. Funding from the local authority is not the same as funding from the NHS. Has your mum been assessed for CHC?

    • Christopher Gallagher 3 years ago

      Geoff, She should be retaining at least £24 or 25 a week without the nursing home deciding how she should spend it. It is for personal use and not actual care use. I assume that this is the extra that they are taking.

  18. Jenny 3 years ago

    After a struggle my relative has been awarded 100% Continuing Healthcare (CHC) funding. None has been paid yet as they say he needs to be in a nursing home, not residential. The preferred nursing home to which he might be moved has mentioned top up fees are levied which I know is unlawful – although the National Framework Practice Guidelines does mention CCGs should set a rate that is appropriate within their area. Does that just refer to joint funding? If not surely that is at odds with Coughlan?

    Second point. I’ve not received an agreed care plan, ever. Should this have come with the CHC eligibility letter?

    • Angela Sherman 3 years ago

      Jenny – your relative doesn’t have to be in a nursing home to receive CHC. They can be in residential care or at home. CHC should be paid as soon as the funding decision has been made and it is not based on where that care is provided: http://caretobedifferent.co.uk/where-can-a-person-receive-nhs-continuing-healthcare-funding/ CHC cannot be topped up – as you suspected, this is unlawful; the funding must cover all care fees. You wouldn’t necessarily receive the actual care plan with the eligibility letter, but there must be one.

    • John Garner 3 years ago

      My wife who was given Continuing Healthcare (CHC) via a Fast Track package through the hospital in September 2012. I am in process of fighting to retain this for her. Her condition is far worse now than it was in 2012 at the time the fast track CHC was put in place and she was moved to a Nursing Care home where she is today. Friday 14th July 2016 she was admitted to hospital with suspected Sepsis. High temperature and and high irregular heart. I have to attend the CCG this Thursday to reaffirm that her condition is worse now. The stress I am feeling is terrible.

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