An Index for Navigating Continuing Health Care Process

This is a work in progress.

The formatting is lost in this copy / paste post

An easier to read version is downloadable here:

I do hope it is useful to someone. If only as an aid to sleep.

I am still reading and am happy to give answer questions.



PS There is information here on how you might apply for CHC Care if you are currently on Means Tested Social Care as well as how to claim back monies you have already spent.


Continuing Health Care Help Index

These notes are an abstract of some of the superb Care to be different website ( which is an excellent resource for Continuing Health Care applications and problems.

The director makes one point often – Keep a diary and make notes off who, what, when and where things like meetings, conversations and assessments occur. Add your own comments too. This information is very helpful if things don’t go the way you want.

Home Care and Care Home Home Funds and Fees

If you’re paying care home fees (or paying for full-time care at home) and you have health needs, you could be entitled to NHS Continuing Healthcare.

There are two different Nursing Care Pathways

There are two types of nursing care funding:

1. Fully-funded NHS care is called NHS Continuing Healthcare. This covers 100% of care fees.

2. Registered Nursing Care Contribution (RNCC) or Funded Nursing Care (FNC) is a weekly allowance to cover some nursing care.

You should ALWAYS be assessed for NHS Continuing Healthcare BEFORE you’re assessed for FNC.

Keep in mind that the Funded Nursing Care payment is currently £110.89/week (from 01/04/14).

If you have health needs and someone speaks to you about an ‘assessment’, make sure it’s an assessment for NHS Continuing Healthcare and not a Local Authority financial assessment.

Sadly, online forums such as the Alzheimer’s Society’s Talking Point and the Parkinson’s UK forum and others show that many families feel caught between the local authority and the NHS – often pressured to undergo a financial assessment and yet trying to get through the NHS Continuing Healthcare process at the same time.

NHS Continuing Healthcare

NHS Continuing Healthcare is also known as ‘Continuing Care’ or ‘Fully Funded NHS Care’.

*What does it cover?

*Should you be assessed?

How to get assessed for Continuing Care

This page also gives links to the guidelines the assessors should follow and the forms they complete.

Letting the assessor know you have read up a little on the process often ‘encourages’ them to take more care. Reading the guidelines which they are meant to follow means that you will be aware of any departures from protocol. This can become a crucial part of any appeal you might want to make later.

Downloading and completing the forms yourself is another way of gathering evidence for an appeal.

Ask for copies of their Check list (For the first stage of the assessment and the ‘Decision Support Tool’ for the second stage.

Important: If the assessment is taking place in the Hospital of a Home – be there and be part of it.

What are the different stages of NHS Continuing Care assessment and appeal?

What are the NHS Continuing Healthcare assessment guidelines?

The Coughlan case

Why being re-directed to Social Services means tested care might be unlawful.

The case clarified the law regarding fully-funded NHS Continuing Healthcare. The Court of Appeal stated that…

“…where the primary need is a health need, then the responsibility is that of the NHS, even when the individual has been placed in a home by a local authority.”

Care should never be split between Social Services means tested care and Continuing Health Care.

NHS Continuing Healthcare assessments – and the legal limit for local authority responsibility

The Coughlan case also clarified the law regarding responsibility for long term care funding, and reinforced a legal limit for local authority responsibility. If the local authority accepts responsibility for the care of a person with needs above this limit, it is acting unlawfully.

The judgement in the Coughlan case confirmed that the majority of nursing care needs, even many low-level day-to-day nursing care for needs that are considered ‘stable’, are often the responsibility of the NHS to fund – not the local authority.

And so, in an NHS Continuing Healthcare assessment of your relative’s needs, one way to check that the social worker is playing an active role is to ask them how exactly they have evaluated your relative’s needs against this legal limit.

NHS Continuing Healthcare assessments: The vital question to ask the social worker

CHC Assessments are required to be Multidisciplinary assessments. Sadly and unlawfully it is just one Nurse who undertakes them. If this happens make a note of it, This could be part of an appeal later on.

What are the different stages of NHS Continuing Care assessment and appeal?

What are the NHS Continuing Healthcare assessment guidelines?

Care home top-up fees: Do you really have to pay?

Top-up fees relate to local authority care/social care and do not apply to CHC funding. So, even though you can’t top up CHC, the NHS can’t simply dictate what care home a person has to be in if they receive CHC. I have known people receive full CHC funding in homes that cost over £1000 per week.

Continuing Care Fast Track assessments – how to get a quick decision

“Individuals with a rapidly deteriorating condition that may be entering a terminal phase, may require ‘fast tracking’ for immediate provision of NHS continuing healthcare.”

NHS Continuing Healthcare denied? Here’s what to do first…

32 Replies

  • Kevin

    You my dear, deserve a medal!!!!!!



  • Liz says that's the problem...I always meddle ;)


  • Lol


  • Whew! You've been busy Kevin and I'm sure it will be very helpful to those who don't yet have CHC. One little thing I would add; the director suggests keeping a diary, taking notes of meetings, assessments etc. I would ( and did) also keep notes/diary of help loved ones received from the carer, falls, falls prevented, incontinence incidents that caused extra concern/ work and any action the one with PSP did that was dangerous. In fact any piece of evidence that can be used during assessments. I haven't read all the pages in your post so this may be mentioned elsewhere.

    Thanks for posting this Kevin. I'm pleased I won't need to use it but know a lot of people will.


  • Thanks NannaB

    I agree - there can never be enough note taking. Dull though it is!

    Glad you don't need it :)

    We're crossing various tram junctions right now. So it seemed a necessary exercise.

    And as I was reading it all it seemed helpful just to do a little cutting and pasting.

    Here's hoping we won't need it.


  • Thanks Kevin, more ammunition in my locker for next month's reassessment of M's CHC now she has been in a nursing home for 4 months. Also shared with home as they have a few on CHC and all are being reassessed over the next 6 weeks, seems new team taken over in local health board CHC admin. They are doing an exercise probably been told to save cash as local health board £20million in debt.

    Thanks again for so much detail.


  • Hi Tim

    I worry we might be caught i such an exercise.

    However, as you know:

    The law and the standards has/have not changed.

    I doubt M has improved

    They are approaching from astern!

    Good Luck


  • Thanks Kevin will keep fingers crossed they see sense.


  • Thank you Kevin. We have been turned down once and will be applying for it again, probably at the end of the month, so all advice is gratefully received! X

  • Thanks Kevin. Maybe this a bit far ahead for Bugs but I will save the info. CHC sounds far more of a nightmare than the Social Services assessment. I will update on the sandwich sage sometime.

  • Many thanks for all your hard work on CHC. I'm waiting to hear about outcome of initial assessment but I'm not expecting a yes as was all rather rushed and I've not given enough info by looks of it.

  • Why was it rushed spiral sparkle? Are you saying whoever did the assessment rushed you? Cos that would be very wrong!

    You can get the hospice involved too as they will back you up! X

  • Yes they rushed and I wasn't really prepared for it and the questions. Don't hold out much hope for the social worker giving an accurate report either. Will see what the decision is....

  • Utterly disgraceful spiral sparkle!

    When the result comes make sure you get a copy and then let me know!

    I'll try and help you, it's all a bloody joke, everyone fighting for something that should be given to them without all this nonsense!

    I only wonder (again) how these people will get on and feel in later life if/when they need help?

    Keep me posted darling x

  • If I may, here's a suggestion:

    Take ten minutes to make notes about the interview - "rushed" how careful were they, how thorough, anything.

    Here is the form they should have filled in:

    (Just click the 'No thanks' you don't need a dropbox account)

    If they turn you down look at the appeal section in the post above.

    If you choose to appeal ask for their completed Checklist. Complete your own.

    Sent all back as evidence.

    I am happy to help on this sort of stuff. I used to do a lot of this sort of thing for a living.

    Hope none of that happens

    Good luck


  • Thank you Kevin, that will be of help to me and many, we have just been refused even though things got so difficult that now my husband is at a nursing home which we are part funding.

    I suspect it will be even harder to get now that he is there but I will follow advice and keep trying. 😊

  • Again this sounds very wrong nana

    This is all so very infuriating!

    Where was the assessment done and by whom? X

  • It was done at home with one nurse and our social worker and I was more or less told at the start not a chance! the nurse suggested my husband go into respite for a month with the view of it being permanent which it has to be, I can't manage but I just feel like getting him home again x

  • Hi nanonthenet

    If you want a bit of a hand just private message me. I will do my best.

    If you are successful you will get your spending back.

    Good luck.

  • Thank you Kevin, I will do that, I feel as though I've hit a brick wall right now.

  • Kevin...the …where the primary need is a health need, then the responsibility is that of the NHS " is where have an issue. Our SS is currently supporting my wife but are now saying that is unlawful and it should be the NHS. How do you differentiate between health and care. My wife cannot anything for herself and is about to be fitted with a peg. Yet CHC still refuse.


  • Barrie

    These replies are really quite awful to read, again I'm sure your wife should have chc!

    Can I ask who did your assessment and on what grounds was it refused?!

    So so stressful

    Big hug X

  • It was carried out by a group of people who support mu wife. OT, Community Matron, Care Manager, Physio ,SALT

    We have just re applied but it got turned back because of document errors. It is now just about to be submitted again after being vetted by our SS specialist in CHC.


  • It was originally turned down last january. From memory there was not enough health content

    Our local hospice could not believe it

  • Disgusting Barrie

    These are supposed to be trained and professional people doing the assessment that understand exactly what their doing! Clearly not!

    Once it's agreed I'd be claiming monies back that you've paid for their error!! X

  • There does not need to be 'enough health content'

    This is NHS forgetting / ignoring the Coughlan case.

    There just needs to be a primary health need.

    If I am infirm from age and have a cough there is no primary health need.

    If I am infirm from PSP and need a lot of 'Care'. There is a Primary Health need, the PSP, and the care has to be provided by the NHS on CHT.

    They try to dodge it by saying, "Oh, but of course you will understand making beds and fetching food and toileting is not nursing. It's social care." NO IT IS NOT. That decision is unlawful because of the High Court decision re. Coughlan.




  • Kevin...we have now been told the following:

    "Hello Barrie,

    We have just come from the meeting with our lead practitioner for CHC.

    There are still issues that need to be clarified and evidence gathered around cognition communication and behaviour.

    We need to know when you have these disturbed nights with Jenny what exactly do you need to do with her. Do we know if this is caused by pain ? What pain medication is Jenny taking and any other medications. We need to look at providing a pain chart that can be interpreted by yourself / carers for Jenny.

    We will be in touch next week to re visit you both to hopefully gather more detailed information on the above issues"

    What do you think of the above. Is all of this necessary

    It goes on and it worth it


  • Hi Barrie

    I'm afraid its a who can guess what they're up to one.

    Though I can understand your consternation. Our PHB is going before the panel on Monday and I'm nervous as hell.

    What they have said would indicate that a manager has found their care plan to have missing areas. The Care plan is not part of the fund or not decision.

    As for what do you do with her. - If that involves you getting up in the night, do not forget to tell them how that impacts on you the following day. You may consider asking to have spare carer / sitting ours that you can use 'as and when' so that you can get some sleep the next day. The rule is not to hold back.

    Though you have past this stage you might want to take another look at this page. Just in case they move on to some of the 'Decision Making Tool" areas.

    Good luck.


  • Thanks Kevin,

    Even though we have got CHC a lot of the information in your post is very helpful to me regards choice of nursing home and funding! I'm going to print it all off and take it with me everywhere!

    Thanks again!

    Love....Pat xx😊

  • Hugs Pat

    That made me smile

    You are great.



  • Kevin thank you for all your input, you sound like a lovely caring person, Liz is very luck to have you, we have chc but will print it off and keep it somewhere safe. Thank you once again xxxx

  • Hi Yvonneandgeorge

    Your welcome. I'm glad this was useful.

    I do care a lot, but I'm tad poorer than I want to be at the personal care stuff.

    As always best to you both :)



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