Caring for a loved one with dementia can be emotionally and financially overwhelming. However, if their health needs outweigh their social care needs, they may be eligible for NHS Continuing Healthcare (CHC) funding, which covers the full cost of their care.

This guide will walk you through how to apply for CHC funding, whether dementia always qualifies for funding, and what to expect from the often complex assessment process. In our guide, we cover:

• What is CHC Funding
• Does dementia qualify for CHC Funding?
• Do dementia suffers have to pay care home fees?
• When should someone with dementia go into a care home?
• How can dementia patients apply for CHC Funding?
• What happens if you are eligible for CHC Funding?

What is CHC Funding?

CHC funding is a package of care arranged and funded by the NHS for people with ongoing healthcare needs. Unlike social care, which is means-tested, CHC funding is based solely on health needs and covers 100% of care costs, whether in a care home or at home. This funding is intended to provide care for those whose primary need for care is due to health rather than social needs.

Learn more about NHS Continuing Healthcare funding.

Does dementia qualify for CHC funding?

Not all dementia patients will automatically qualify for CHC funding, but many may, depending on the severity of their symptoms and overall health.

The decision to provide funding for a patient is determined by assessing their needs across 11 different care areas or domains. Dementia typically affects the “communication”, “cognition,” and “behaviour” domains, but the overall assessment considers how severe the disease is in other areas as well. For example, problems with motility, continence, medication management and psychological or emotional needs can also influence the funding decision.

To check if someone with dementia may require a full assessment for CHC funding, an initial screening Checklist is carried out. You can review the Checklist, or continue reading for more information.

Dementia and Continuing Healthcare Checklist

The Checklist can be conducted by various healthcare and social care professionals, such as a registered nurse, GP, social worker, or care manager. As mentioned, it considers 11 care domains, including:

1. Breathing*
2. Nutrition
3. Continence
4. Skin integrity
5. Mobility
6. Communication
7. Psychological / emotional needs
8. Cognition
9. Behaviour*
10. Drugs/Mediation/Symptom Control*
11. Altered states of consciousness*

Each of these domains is then rated in relation to the level of care required. The rating system used can be found below:

1. Indicates a high level of care needs
2. Indicates a moderate level of care needs
3. Indicates low or no needs

For a full assessment of whether a dementia patient qualifies, the scores from the Checklist are measured by the local NHS Integrated Care Board who will review the findings. Typically, the following criteria are required:

• 2 or more ‘A’s
• 5 or more ‘B’s (or 1 A and 4 Bs)
• or at least 1 A in a domain with an asterisk*

If the above criteria are met, then the patient will receive a full assessment carried out by a multidisciplinary team (MDT)

Do dementia sufferers have to pay care home fees?

Dementia care is not free. Most patients (or their families) will have to pay for some of the care they receive. However, if a patient’s health needs are significant enough to qualify for CHC funding, their care costs will be covered in full by the NHS.

CHC funding focuses on health needs, which are more likely to occur as dementia progresses. For example, patients with advanced dementia may struggle with communication, mobility and personal care which, as mentioned earlier, can increase the chances of receiving CHC funding.

If a patient is not eligible for CHC funding, there are often alternative methods of care funding available. NHS-funded nursing care or local authority funding might be available for those who don’t qualify for CHC funding. However, the latter is means-tested, unlike CHC, which is free at the point of need.

When should someone with dementia go into a care home?

Determining the right time for a person with dementia to move into a care home is a deeply personal decision, but certain signs may indicate it’s necessary for their safety and well-being. These signs include:

• Safety risks

Patients who become prone to wandering or are unable to navigate daily activities may require more support.

• Behavioural changes

Aggression, confusion, and difficulty with personal care may necessitate a higher level of professional care.

• Caregiver burnout

Caring for someone with dementia can be exhausting, and caregivers often need professional assistance to manage.

• Mobility issues

If mobility declines and the patient is at risk of falls, a care home with professional support can be the best option.

• Wandering uncontrollably

When dementia sufferers become prone to wandering, especially without awareness of the surroundings, moving to a secure care environment can be critical. Read more about care home decisions.

How can dementia patients apply for CHC funding?

If you believe a loved one with dementia may qualify for CHC funding, the first step is to reach out to us here at Farley Dwek. After an initial consultation with our team if we consider that you have reasonable prospects for CHC funding, we can begin to support your application process.

To start, you’ll need to arrange a Checklist by contacting your care home, social worker, or GP. Once this is initiated, Farley Dwek can assist in representing you at the Multi-Disciplinary Team (MDT) meeting as an advocate. Learn more about our MDT Advocacy Service, to see if you fulfil the criteria.

If the initial Checklist application for CHC funding is successful, you will be progressed onto a full assessment conducted by an MDT. During the full assessment, the Decision Support Tool (DST) will be used again to evaluate your eligibility.

At this stage, the number of care domains assessed increases from 11 to 12, with the additional domain being “Other significant care needs,” which the assessor will evaluate. The entire process from initial referral to MDT should not take longer than 28 days.

What happens if you are eligible for CHC funding?

If your loved one is deemed eligible for CHC funding, you will receive a letter from your local NHS Integrated Care Board confirming their eligibility and the level of care they require. Funding will either be paid directly to the care provider or set up as a personal health budget (PHB), which you can manage on their behalf.

Farley Dwek can also assist with reviewing past care home fees for retrospective claims, ensuring you recover any costs already paid before or after death if your loved one was eligible for CHC funding at that time.

Can you get CHC funding for dementia?

If we hadn’t made it clear, YES. It is more than possible for dementia patients to receive CHC funding, but eligibility depends on the severity, complexity and intensity of their needs and the level of care that is required to manage them. The application process can often be long-winded and confusing.

At Farley Dwek, we can provide an initial assessment to determine whether your loved one may qualify, saving you time and hassle. If our experts determine that there are reasonable prospects of a strong case, we can take on the application, helping to cover care home fees or recover costs already incurred.

For more information on how to get CHC funding for dementia, contact our team on 0161 272 5222 or contact us for free initial advice.

We have recently had a lot of telephone calls enquiring about the NHS continuing healthcare funding Checklist procedure and what it entails.  Most of our enquiries relating to this topic come from people whose elderly parents are currently in hospital and are about to be discharged to a care home or nursing home environment; or whose parents are currently in care but have never even been assessed for NHS Continuing Healthcare Funding.

Download our free CHC guide.

The initial Checklist Assessment

This is used to help practitioners identify whether your relative may need a full assessment of eligibility for NHS Continuing Healthcare – which is then carried out subsequently by a Multi-Disciplinary Team (MDT).

A Checklist at the initial stage of an Assessment is only a screening tool (with a low threshold for success) and is designed to encourage proportionate assessments of eligibility, so resources can be directed towards those people who are most likely to be eligible for NHS Continuing Healthcare, and to ensure that a sound reasoning is provided for all decisions regarding eligibility.

It is often the case that after a period of treatment in hospital, the NHS will provide your relative with an interim package of further support, which may include rehabilitation.  The National Framework for NHS Continuing Healthcare (“the National Framework”) recommends that where this is the case, any assessment of eligibility for your relative’s Continuing Healthcare Funding should be deferred until the package of support measures has taken effect.  This will allow time to see whether the prognosis improves as this may affect eligibility for funding.

The Checklist Screening Tool

The Checklist screening tool has 11 care domains broken down to 3 levels A, B or C – where A represents the highest level of care need, and conversely C is a low level of care need.  The outcome of the Checklist depends on the number of A’s, B’s and C’s identified.  The Checklist threshold at this initial assessment has been set intentionally low in order to ensure that all those who require full eligibility get this opportunity.  Therefore if the patient does not trigger to the next stage, then unless the Checklist is flawed, inaccurate or has not been carried out robustly, it is a good indication at this stage that your relative’s health needs are at a low level and to not qualify for funding.

When to use the checklist

You can ask for a Checklist Assessment to be carried out at any time before your relative is discharged from hospital into care, or whilst in the care setting. The initial Checklist Assessment should be performed within 14 days of it being requested, even though these timescales are already met by the NHS.

According to the National Framework, completion of the initial Checklist Assessment is intended to be relatively quick and straightforward, and the NHS National Framework indicates that it is not necessary to provide detailed evidence at this stage.

As above, the initial Checklist Assessment has a deliberately low threshold to try and include as many people as possible who may be entitled to NHS Continuing Healthcare Funding.  Its purpose is not to make any decision about eligibility for free NHS funding, but it is designed to see if the patient triggers get to the next level – ie for a full Assessment by a Multi-Disciplinary Team (MDT).

The MDT Meeting

It is at the MDT meeting where ‘recommendations’ are then made to the CCG for NHS Continuing Healthcare Funding. Whether positive recommendations for funded care are then sanctioned by the CCG is entirely another matter (!) and in our experience, can sometimes be rejected arbitrarily by senior heads who have not been directly involved in the assessment process, but who (cynically – our words) have budget constraints to protect.

Who completes the initial CHC checklist?

The initial Checklist Assessment can be carried out by any healthcare professional e.g. a hospital doctor, GP, District Nurse, Registered Nurse employed by the NHS, other clinicians or other Local Authority Staff, such as Social Workers, Care Managers or Social Care Assistants – but they must be trained and qualified to do the Assessment. It is also expected, so far as possible, that the Assessment will include staff involved in assessing or reviewing patients’ needs to do this as part of their day-to-day work.

Where does the initial Checklist take place?

Screening for the Initial Checklist should be done at a time and location which is convenient for your relative and when their ongoing needs are known, so that a proper assessment can take place to help practitioners to correctly identify who triggers for the full Multi-Disciplinary Team Assessment.

In the hospital setting, the National Framework provides that, so far as possible, in order to try and achieve the optimum result, the Checklist Assessment (if required) should ideally be completed at a point where the patient’s acute care and treatment has reached the stage where they are ready for safe discharge, their likely longer-term needs are clear, and wider post-discharge needs are also being assessed (Practice Guidance para 18.4). Otherwise, if insufficient time has elapsed and the Checklist Assessment carried out prematurely, it could give an inaccurate portrayal of the patient’s needs longer term needs – as potentially, they could make a further recovery.

If in a care home setting, the Care Home should contact the relevant CCG NHS Continuing Healthcare Team to arrange for a Checklist to be completed however, where a CCG has an agreed protocol in place with a Care Home, then other arrangements for completion of the Checklist may apply.

Are you aware of the CHC Checklist Assessment?

You (and your relative) should be given reasonable notice of the Checklist Assessment taking place and you should usually be given the opportunity to be present when the Checklist is being completed.

In an acute hospital setting or where an urgent decision is needed, notice of maybe a day or two days.

In a community setting, especially where needs are gradually changing over time, more notice maybe appropriate.

The amount of notice given should take into account whether the relative wishes to have someone present to act as an advocate for them or to represent or support them and reasonable notice must be given (Practice Guidance paras 11  & 12). Therefore if you haven’t been given any notice or sufficient notice, you can ask for the Checklist to be deferred so that you can attend and to have your say and to make sure that the process is carried out robustly and fairly.

Often we hear that initial Checklist Assessments are completed without the family even knowing it has been scheduled to take place; or even once it has taken place, the family are not even notified of the outcome until it comes to light (which can be many months or even years later).

Negative outcomes

Anecdotally, we hear ‘horror’ stories where the patient examination at the Checklist Assessment was so cursory and perfunctory as to be meaningless – unsurprisingly resulting in a negative outcome for the patient; or where family members have turned up for a scheduled Checklist Assessment in plenty of time, only to find out it has already been carried out in advance before they even arrived – usually resulting in a negative outcome and being told that unfortunately, their relative did not qualify for a full assessment – fait accompli!

CHC Appeals

One of our recent enquirers has even told us that they turned up for an Assessment as arranged, but the person conducting the Checklist didn’t even wish to see their relative who was in the next room.  They said it was not necessary, and despite pleas to examine their relative before completing the initial Checklist, were refused and ignored. This led to an immediate appeal of the process, but in the meantime the patient was forced to continue paying for their care, whilst the process was reviewed. It beggars belief how anyone can assert that they have competently and accurately completed an initial Checklist Assessment without actually seeing the patient in person – frankly quite unbelievable!

This scenario, whilst thankfully uncommon, does point to a general lack of training and understanding, and varying ability, by those carrying out the initial Checklist Assessments on behalf of the CCG’s; and naturally leads to inconsistencies and discrepancies nationwide performing the Checklists. The lack of consistency throughout the country is frustrating for families going through this cumbersome and somewhat daunting process, where so much can rest on an initial Checklist Assessment being properly carried out. Get it wrong at the outset, and it can often lead to perverse outcomes, whereby patients don’t even get past first base and progress to the MDT stage.

Is the initial Checklist Assessment always needed?

There are occasionally exceptional circumstances where it is not necessary to complete an initial Checklist Assessment, such as when this is clear to practitioners that there is no need for NHS Continuing Healthcare at this point in time. For example, if it is simply too premature because the patient has short-term healthcare needs; or perhaps is recovering from a temporary condition and have not yet reached the optimum recovery point; or it has previously been decided that the individual is not eligible for NHS Continuing Healthcare and it is clear that there has been no change in needs. The decisions and reasons for not undertaking an initial Checklist Assessment must be recorded.

Alternatively, the health needs could be of such a nature that they would justify skipping this preliminary stage and taking the matter straight to a full assessment for NHS Continuing Healthcare without doing a Checklist at all.

The most common example is where the patient has a rapidly deteriorating condition and may be entering a terminal phase in which case the patient should be referred to the Fast Track Pathway Tool instead of the Checklist; or the individual receiving a service under Section 117 of the Mental Health Act that are meeting all their assessment needs.

Outcomes of the Checklist Assessment

The completed Checklist Assessment does not indicate the likelihood that your relative will be eligible for NHS Funding, but is merely to trigger the next stage as to whether or not a full Multi-Disciplinary Team Assessment ought to take place.

The outcome of the Checklist must be communicated clearly and in writing to your relative, or you as their representative, as soon as possible, with reasons as to why the Checklist outcome was reached.

There are two potential outcomes for the Checklist Assessment:

A negative Checklist outcome – meaning that your relative does not qualify for a full assessment of eligibility by a Multi-Disciplinary Team as they are clearly not eligible for NHS Continuing Healthcare.

If your relative has been “screened out” using the Checklist, you should still be given a copy of the completed Checklist and informed that you t disagree with the decision you may ask the CCG to re-consider this.  Furthermore, if their needs subsequently change, it may, depending on the nature of the changes, be necessary to repeat the process and request a new Checklist be completed.

A positive Checklist outcome – which means that they now trigger for a full assessment for eligibility and the matter should be referred to the next stage, to a Multi-Disciplinary Team Assessment.

Receive your Checklist Assessment

Our advice is, that if you believe that your relative has a health need (or changing need), you should push for an initial Checklist Assessment, and if rejected on unfair grounds, to consider whether the decision can be challenged and the Checklist be re-done.

To find out if you/your relative may qualify for NHS Continuing Healthcare Funding, you can take our free and easy “Two Ticks” Test on our website, which will give you some immediate feedback in literally two ticks as to whether or not they may qualify for free NHS funding https://www.farleydwek.com/two-ticks/ or call us on 0800 011 4136.

Download our free CHC guide.