This article is based on an older blog which has been updated to help you. We’ve had a lot of new enquirers recently asking how to get the CHC process started…
If your relative has a ’primary health need’ i.e. the main purpose of their care is for health needs (as opposed to social care needs), then they may be eligible for NHS Continuing Healthcare Funding.
NHS Continuing Healthcare Funding (‘CHC’) is a package of fully-funded care, paid for by the NHS, and which is ’free at the point of need’. CHC is paid, regardless of the setting where the care takes place and irrespective of the recipient’s wealth (as it is not means–tested).
Without CHC Funding, your relative may end up self-funding their care and paying for it out of private savings or even be forced to sell their home.
In order to be considered for CHC your relative will need to engage with the CHC assessment process to determine their eligibility for NHS Funding.
Here are some quick Questions and Answers to help you:
What is the purpose of the Assessment?
The assessment process has 2 key objectives, namely to establish:
1) what your relative’s care needs are (crucially, so that the right care is in place); and
2) whether that care is the legal responsibility of the NHS or the Local Authority to fund.
It should never be an assessment of your relative’s money, nor is it an assessment of the Integrated Care Board’s (‘ICB’) budgets, or their willingness to pay.
When does the assessment process start?
The assessment process should ideally begin as soon as your relative needs full time care, or in any circumstance that would suggest they may be potentially eligibility for NHS Continuing Healthcare. If it is delayed, they risk being means-tested and told to pay for their care before anyone has explored whether the NHS may have a duty to pay.
What is the Checklist?
The process to determine eligibility for CHC starts with an initial Checklist – a preliminary screening tool used by the NHS to help practitioners assess a basic level of need and determine whether an individual is eligible to move forward to a full assessment for NHS Continuing Healthcare Funding.
Families often get confused and wrongly believe that the Checklist is the actual final decision. It isn’t! It’s simply a process designed to screen out individuals who aren’t eligible for CHC funding and to enable those who may be, to move on to a full assessment.
Where do I begin?
Firstly, you need to establish whether an assessment (for NHS Continuing Healthcare) has already been carried out.
If it has, ask for a copy of the completed Checklist as you need to find out exactly what type of assessment took place. It may have in fact been a financial assessment to assess affordability to pay for care home fees, and not a Checklist assessment to determine eligibility for NHS Continuing Healthcare (remember, which is free).
WARNING! If your relative is already in a care facility and no assessment for CHC has been done, they could be paying thousands of pounds a month for their care unnecessarily!
Where does the Assessment take place?
The Checklist assessment used to take place in hospital, but that changed under new guidance in the revised edition of the National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care (October 2018) and still remains the position in the updated National Framework (July 2022).
Preferably, the Checklist assessment should now take place once the individual is back in their own environment or appropriate community care setting where they are going to be living i.e. back in their own home or care home facility. That way, a more accurate picture of their long-term healthcare needs and requirements can be obtained away from an acute hospital setting.
How do I start the assessment process?
If your relative is about to be discharged from hospital, ask your local ICB’s NHS Continuing Healthcare Department/Team to start set up a Checklist assessment for them.
If they are going into a care home for the first time, ask the Care Home Manager to arrange the Checklist assessment.
If they are living in their own home, ask their GP, therapist, social worker, community or District Nurse to set up the Checklist assessment with the NHS.
If your relative is already paying care fees and you believe they may be eligible for NHS Continuing Healthcare, as above, ask a health or social care professional or care home manager to arrange an assessment.
How does the NHS arrange the Checklist assessment?
The ICB has a duty to carry out an assessment even if your relative is currently paying for their care out of private funds (self–funding).
As your relative’s representative, whether acting under a Lasting Power of Attorney or in their ‘best interests’, the ICB should contact you directly to advise you of the proposed appointment date for the Checklist assessment.
If your relative is living in a care home, then they may notify you of the appointment.
Can the NHS refuse to do the Checklist assessment?
Yes. There are circumstances set out in the National Framework where the NHS can refuse to carry out a Checklist assessment. These include the following:
- Where it is plainly obvious that there are simply no health needs;
- If the NHS considers the individual’s needs are so obvious that they should bypass the initial Checklist and move straight to a full assessment;
- If the individual has a rapidly deteriorating condition and may be entering a terminal phase, in which case the Fast Track Pathway Tool should be used instead. Read, “How To Fast Track The Continuing Healthcare Funding Process.”
- The individual is already receiving services under Section 117 of the Mental Health Act to meet their assessed needs.
Tip: If you feel that the NHS have wrongly declined to undertake a Checklist assessment, then you must complain immediately to the NHS Continuing Healthcare Department/Team.
Who attends the Checklist assessment from the NHS?
The ICB will appoint an assessor to carry out the initial Checklist assessment.
The assessor will be a health or social care practitioner for example: a registered Nurse employed by the NHS, GP, other clinician or local authority staff such as a social worker, care manager or social care assistant.
They should be trained in the National Framework and using the Checklist Tool, and also been involved in assessing or reviewing individuals’ needs as part of their day-to-day work. They must understand how to apply the CHC eligibility criteria against the scoring system when carrying out the Checklist assessment.
Some ICBs will delegate completion of the Checklist to the care home or other organisation under an agreed protocol.
How much notice will I get of the Checklist taking place?
You have every right to be present at the Checklist assessment, so you should be given reasonable notice as you need time to prepare for the appointment.
However, sometimes, if an urgent decision is needed, the Checklist assessment can be arranged at short notice, which, understandably, may be inconvenient for you.
If so, ask for it to be postponed to a more convenient date, as ideally, you should be there and be involved in the process.
Quite often, we hear from families that the Checklist assessment took place (behind their backs) without them or their relative being notified; or else, even if notified, were then excluded from being involved in the process. That is contrary to the National Framework which puts the person at the centre of the process.
If the Checklist assessment took place without your knowledge or involvement and your relative was not successful, then ask for it to be redone.
Do I have to be present At the Checklist Assessment?
In short, yes! It’s vital that you attend.
Don’t let your relative be wrongly filtered out of the assessment process before it has even begun!
Whilst it is not a mandatory requirement, we strongly recommend that family representatives get involved and contribute to the assessment process.
You are best placed to know your relative’s healthcare and daily needs better than anyone. Use that advantage to explain their needs to the ICB assessors (who may be meeting your relative for the first time) and to ensure that the assessment process is conducted in a fair, open and transparent manner.
You must try and make every effort to be at this initial assessment to support your relative’s case for CHC funding and at least get on to the next rung of the ladder – which is a full assessment.
How do I prepare for the Checklist Assessment?
Good preparation and planning are essential at this stage of the assessment process.
We recommend that you go through the Checklist yourself and score your relative’s needs against the prescribed criteria/descriptions for each Care Domain. That way, you will know in your own mind whether the assessor’s scores are fair and can argue the case if you disagree with them and correct any misinformation they have.
A lack of preparation can prove costly and end up with your relative paying for their care!
Can I have someone to attend with me?
The National Framework provides that you are entitled to have any person you choose to be with you at the Checklist assessment, and they can also act as an advocate, take notes for you, be another pair of ‘eyes and ears’, or simply just be with you to give you encouragement and support.
You don’t have to fight this battle alone. For further reading buy our book “How To Get The NHS To Pay For Care”. If you need specialist advocacy support visit our one-to-one page.
What happens at the Checklist assessment?
The ICB’s appointed assessor will review your relative’s healthcare needs and score them against the Checklist.
The assessor will look at 11 main Care Domains, namely:
- Breathing*
- Nutrition – food and drink
- Continence
- Skin integrity (including tissue viability)
- Mobility
- Communication
- Psychological/emotional needs
- Cognition
- Behaviour*
- Drugs/medication/symptom control*
- Altered states of consciousness *
Each Care Domain is divided into 3 levels and scored A, B or C – with ‘A’ being the highest level of needs and ‘C’ being the lowest.
In order to pass on to the next stage i.e. to a full assessment, your relative will need to achieve a minimum aggregate score of:
- 2 or more As
- 5 or more Bs (or 1A and 4Bs), or
- at least one A in a domain with an asterisk*
How long do I have to wait for the Checklist outcome?
The Checklist will usually be completed within 14 days from the date of request.
The National Framework states that whatever the outcome of the Checklist, it should be communicated clearly and in writing to the individual or their representative as soon as “reasonably practical”.
So, if you do not receive any communication from the ICB within 14 days of the assessment, then we recommend you contact them to chase their outcome decision.
What are the possible outcomes of the Checklist assessment?
There are 2 possible outcomes:
- A negative Checklist; or
- A positive Checklist
Let’s explore both scenarios below.
What happens if the Checklist is positive?
As above, you should be notified of the successful outcome in writing and be given a copy of the Checklist and reasons for the outcome decision (usually contained within the Checklist).
Your relative will now be passed on to a full assessment which is carried out by a Multi-Disciplinary Team (MDT).
Important! A positive Checklist does not necessarily mean that your relative will be found eligible for CHC funding at the MDT stage. Indeed, many applications are turned down (whether correctly or incorrectly) by the MDT assessors.
Keep the Checklist outcome handy as it may become a useful comparator in due course if your relative is reassessed and CHC funding is subsequently withdrawn.
What happens if the Checklist is negative?
As above, you should be given a copy of the Checklist with written reasons for that negative outcome decision, together with information about how to ask the ICB to reconsider their decision (ie complain!).
Beware! You have 12 months to challenge the outcome and to lodge your complaint.
When reviewing the matter, the ICB should take into account all the information available at the assessment and any additional information that is supplied. However, according to the National Framework, the ICB are not obliged to undertake a further Checklist.
You must adhere to the timescales to challenge the outcome, otherwise you may be stuck with it (even if it’s blatantly wrong).
According to the National Framework, the threshold for passing on to a full assessment “has intentionally been set low, in order to ensure that all those who require a full assessment of eligibility have this opportunity.”
Therefore, a negative outcome suggests that your relative’s healthcare needs are not considered sufficiently high enough to pass forward to a full assessment at an MDT meeting.
If you don’t agree with the outcome, or there has been an abuse of process (e.g. you weren’t included), you can request another Checklist assessment. Contact the local NHS Continuing Healthcare Department/Team in writing, stating your reasons and insist that you would like the Checklist to be repeated.
Keep the Checklist safe. Even if your relative doesn’t qualify, it may still prove a useful exercise and give you peace of mind that their healthcare needs have been properly assessed and are not at a sufficiently high level to trigger a full assessment.
It may also become a useful benchmark for comparison purposes should their needs change (increase) and a further reassessment is required in due course.
When can I request another Checklist Assessment?
If you believe that the Checklist has been completed incorrectly, or the process was not carried out robustly, complain and insist that the Assessment is repeated.
If your relative’s healthcare needs change or fluctuate as time goes by, you can always request that another Checklist assessment is carried out, as and when appropriate.
Alternatively, if the change in needs clearly warrants it, a decision could be made to bypass the Checklist and go straight to full assessment for CHC.
Summary
Remember, the Checklist assessment is just a preliminary screening tool to see if a full assessment is required. It is not the actual assessment for eligibility for CHC itself.
Share your experiences of a Checklist assessment below and help others avoid any pitfalls you have encountered…
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I have waited now 14 months for a checklist to be completed. It is to be done next week, finally. It should have been done when my father in law’s D2A expired but the ICB have never said when this occurred. They should have instituted one of their own volition when it was clear from the psychiatrist’s final report that he had stabilised which was in early January. I had to ask at the beginning of february for a checklist to be done but my recorded delivery letter was not replied to until a follow up in early April. And then contact was made with me two months later. Now we are in September and the ICB have only just got round to fixing a date. I have an LPA for finance but as yet they have not asked me for a penny for care home fees despite him being in care since August 2022 with 2 hospital stays in the interim. They will have to provide chapter and verse as to why they think that I should pay when they have singularly failed to do the checklist and thus failed to determine whether the NHS or social services have responsibility for paying for care. There is no suggestion that a checklist is not required in this matter and indeed I have been told that there will be a DST completed no matter what the checklist outcome. Highly unusual or what? Maybe because I have been an absolute thorn in their side for the past few months and they are aware that I am a lawyer.
The checklist is a fraud. Many thousands of pounds are at stake and yet the checklist assessment is a peremptory look at needs carried out by one person. Not only that but the Framework says that the bar to success is set deliberately low and yet the questions themselves set the bar very high. There are clearly instances in the checklist which require well managed needs to be taken into account, whereas paras 66 and 162 of the Framework states they cannot unless the needs have been permanently reduced or removed. It also appears to ignore the legal position in Coughlan and other cases by virtue of the bar to success required.
Hi Steph,
I’m sorry to hear that your mum & you are at the beginning of this process.
It is a very stressful time and a time that families should be supported through. Sadly they aren’t.
My advice remains the same as I have previously documented on CTBD.
It can be daunting to begin with, but the more you research and read about CHC the better chance you will have of securing funding.
There is so much information on here from others that have experienced this process and are willing to offer advice. You’ve started in the right place!
You can get specialist advice too, but that will come at a cost, that isn’t recoverable if you are successful.
As your mother’s advocate (I trust you have Power of Attorney for Health and Finance – You will be asked to produce them) you cannot be denied access to any meeting or documents appertaining to your mum.
Remember the checklist is just a screening tool that kick starts this process, so if all the evidence from the health professionals and those caring for her aren’t considered in full, then it’s likely that she will be screened out. This is where I would say it’s up to you you to make sure that the person completing the checklist has all that information. Ask them, “Have you got the Care notes/plans? Have you got her report from her Hospital Consultant ….. Have you the report from the Occupational Therapist….as an example.” Unfortunately, in many cases the checklist fails because those completing it don’t always know the person they are assessing (which they should do!) and so often reports and care notes are missing.
Remember also if you mum is rapidly deteriorating then you can ask for the Fast Track to be completed.
Again, there is lots of information on here about the Fast Track.
Good Luck!
Hi CTBD readers! I continue to read the articles from CTBD and latest developments with NHS CHC. To see my submissions from a few years back is hard to read. The impact of this process continues to blight families. I know this as I have helped friends and other family members to navigate the care system that hasn’t changed since I first encountered it back in 2016.
A broken system that currently has no cap on what self funders have to pay!
Broken promises with the Government postponing any cap and means test reforms until October 2025! With a general election in the meantime, it’s highly unlikely we’ll see any cap and with the cost of care rising, individuals will be paying in the region of £60/70k a year. It was so disappointing that the campaign for a judicial review spearheaded by retired Rear Admiral Mathias was rejected and help for those embroiled in CHC continues to be left to individuals to appeal a arbitrary process.
Understandably World events and scandals at home seem to dominate the news and little is asked of our politicians in respect of NHS Continuing Healthcare.
We all need the NHS (from cradle to grave) yet we don’t discuss it’s future and that of Social Care. It’s dropped off the radar as the lives of our news readers/presenters are far more interesting! I despair!! Mental Health has become a huge topic, yet no one considers the impact on the mental health of those appealing CHC. The stress caused cannot be under estimated.
Thank you CTBD for continuing to support families with your informative articles!
Good to hear from you Michele! Thanks for your helpful contributions as always. Kind regards
Hi Wondering if someone can help please.
My Mum was sectioned and therefore is eligible for 117 aftercare. She had a checklist for CHC done (covertly without my knowledge etc) and it said she failed this checklist (quite clearly from your detailed blog she should have passed with flying colours). My question is when someone gets 117 aftercare who decides the level/cost at which they get this and do they rely on the checklist?? I have tried asking SW/CCG ec but they refuse to answer this question and just give me a load of waffle. Thanks
I have just discovered that the care home completed a checklist (after I happened to ask a passing nurse assessor about FNC. There were 5 B scores (which meant a full assessment should be carried out) however the cognition domain was doctored & reduced conveniently to a C. Ironically my Mum had dementia. The comments written by the care home manager said Mum could communicate her needs. This was not the case. This checklist was a cover up and definitely not in line with the National Framework. Furthermore the handwritten comments in Behaviour and Psychological & Emotional did not fit with the suggested criteria. Mum did not have capacity, I held LPA’s but the care home did not ask me to attend. They also got my Mum to consent & sign the declaration even though the previous page said she was unable to consent. Has anyone else experienced this and what did you do? Thanks.
Can anyone enlighten me about the difference in funding Continuing Health Care in Scotland. My understanding is the recipient has to go directly from hospital to nursing home and for that reason, Social work insists on trying the patient at home first thus marking any claim for CHC null and void
I had this with my mother last summer she was hospitalised 3 times with less than a week between each period of hospitalisation and I requested respite care for her .She has been in an NHS funded bed every since however a few weeks ago a social worker came to see her in my presence.Mum was told that she could be cared gfor at home to which I strongly objected as she was unable to mobilise I was prepared to fight them over this as being bedridden and having carers visit 4 times daily was not a suitable option in my opinion Don’t let them force you into something that doesn’t meet your relatives needs. They have backed down and she is now allowed to stay in the care home I have yet to be informed about what they expect her to pay
We’ve done a checklist assessment which mum passed at least until someone went back 3 months after the very detailed meeting we attended and changed the scores. They are saying she gets FNC. It’s taken 8 months to get this far. If I challenge the CHC assessment and fail, will the FNC be backdated? The CCG take so long to do anything I’m worried there will be months and months where mum would have got FNC had I not tried for CHC. Does anyone know the answer to this?
Hi Lynn – Do call us if you would like to chat this through with someone we may be able to assist with your Appeal 0161 979 043 Kind regards
Hello Lynn, I’m sorry to hear you are faced with the stress of CHC. I have finally come to the end of the process after nearly four years of fighting for my late father. Our case went to IRP (Independent Review Panel) with NHS England who found in our favour and my late father’s fees were restored to my mother.
I presented the case myself after spending a huge amount of time researching the National Framework for Continuing Healthcare. If you are able to and are prepared to commit time to challenging your CHC you need to understand the NF. This is a MUST. To be able to navigate the appeal process you need to understand it better than those administering it.
I would try not to focus on FNC ( funded nursing care) this element of funding is approx £158 a week to be paid if your relative is in a Nursing home……not a care home. This is a fraction of the £1,OOO.OO + that most nursing homes charge. If you honestly believe that you’re mother has a Primary Healthcare need as set out in the NF, then you need to focus all your efforts in proving that through the process of the DST.( Decision support tool)
Start by making a complaint to your CHC about the shambolic assessment process that you have encountered so far.
The checklist scenerio you have described sounds messy and enough reason to make that complaint.
I had a similar messy checklist start. 1st one was completed by a “bank registered nurse” It was deemed by CHC to be so poorly completed that CHC deemed a 2nd checklist to be completed the next day. The family had no idea a 2nd checklist had taken place until we received the IRP file. I had appealed the 1st checklist and believed this to be the reason a MDT/DST was arranged. It wasn’t. I had wasted my time and effort appealing a checklist that had been binned without being told this. It was the 2nd checklist that was completed by the care home manager that triggered the DST.
To read the IRP folder with 2 checklists completed a day apart with glaring differences was the start of a process that lacked transparency and accountability.
Making the challenge will be exhausting and you may well decide to opt for help using a specialist firm, but please be mindful of the costs that are incurred. These costs cannot be claimed back if you are successful at appeal.
You will have to make a well informed decision before making that call.
This forum is an excellent source for information. There are many articles that focus on different elements of the process, with some very knowledgeable contributors who continue to help others succeed in getting CHC.
Good Luck!
Thank you Michelle. I really appreciate you taking the time to write what you did. I agree about understanding the National Framework. Today I did get the immense satisfaction of pointing out to the head of CHC that the Checklist is a screening tool not an detailed evidence gathering exercise. He was offering to start again with the whole CHC process and thus conveniently ditch the properly performed checklist ( over 2 hour process by trained assessor provided by the CCG) that scored my mum the necessary 2 As and replace it with a comprehensive and detailed new exercise instead. I told him that until he responded in writing to my complaint about the changing of the scores and explain why the perfectly valid checklist should disregarded there would be no consent (I have POA) to anything further. They do really seem to rely on people not reading the framework! Thanks again x
Hi Lynn, you’re welcome. I just want to help others and give a bit back after taking so much information from others who have contributed to this forum. I can tell from your post that you are not going to be bullied by those at CHC and I’m pleased you’ve told them how it’s going to be!
To get anywhere in this process you have to be tenacious and not frightened off by those administering it.
If you are going to tackle them yourself, get prepared to do battle. I hope you have plenty of office space as the folders of paperwork that are generated from the process rapidly grow. Keep an email folder as well as hard copies. Keep absolutely everything! Make a diary of your mum’s health/medical appt/GP visits in fact record everything! I made notes every visit I made to my late father and even made entries of comments made by care staff. I kept a folder of every invoice and receipt and statement produced by the care home as they will be asked for if you are successful and are claiming retrospectively. I don’t want to frighten you off but our case started off with errors and maladministration at the checklist stage. It took almost four years to get closure and restitution and now as I reflect on how I was able to prove the Primary Healthcare Need, I know that keeping on top of the paperwork and appeals was a huge part of the process. Keep the pressure on them! Keep emailing them and writing to them/always signed for as well. They are notorious for saying it was received. I went to their offices and hand delivered and got it signed for! Even then paperwork was lost. They even try saying they haven’t rec’d emails, so always tick the rec’d box.
Copy in your local MP too.
I also know that getting to grips with the National Framework and understanding every part of the journey was essential.
The reason so many cases don’t progress is because families are overwhelmed by it. Yes it is daunting to begin with, but it really isn’t rocket science. I think the hardest part for me was proving the PHN through the four key indicators. This is the ultimate test after the completion of the DST.
Reading what the assessors at my father’s DST wrote with regard to the use of the key indicators was very poor. They really hadn’t got any idea how to apply the characteristics of Nature, Complexity, Intensity and Unpredictability to my father’s case. It was summed up in just one short paragraph. Woefully inadequate for someone who had advanced Parkinson’s disease and advanced dementia who required around the clock nursing to remain living and safe!
My submission for PHN using the key indicators was four pages long and that was keeping it short! I had time to work on these, whereas assessors haven’t. Although you would think that doing the job they would know what they were talking about. But they don’t know how to apply the key indicators. It’s just a case of fill in the box and move it on. I remember at the MDT/DST the lead assessor drew up a list of recommendations that should have been followed up in respect of further investigating my father’s DST. It never happened! A list of things that should have been completed prior to the MDT/DST which hadn’t taken place. (An MDT/DST should be a well informed meeting with all information collated Prior and available to the panel) Nothing happened and the decision of ineligible was simply ratified in less than 48 hours by the CCG. NO mention of the recommendations. They were lost or more likely binned. We fortunately made notes throughout the MDT/DST and used that as evidence to prove our case.
I know I’ve rattled on a bit here, but what I’m saying is believe in yourself. Read everything you can about CHC and be thorough with the paperwork. Whilst it is a challenge you have nothing to loose and everything to gain. My own health did suffer as a result of the stress and you will need to be mindful of this, but if folks like us don’t challenge the NHS/CCG/CHC then how will anything change and moreover, don’t moan about it, if you aren’t prepared to stand up for what you believe in.
Good Luck
Hi Michelle
Thanks for your most valuable post. I am at the start of this, and while it is daunting I am determined to fight for my mother’s right to funding. The CCG have already tried to tell me I am not entitled to attend the screening checklist and I have had to get beiligerent with them, so it’s going to be a hard fight.