Following on from our recent blog Dissatisfied with your MDT outcome? Consider these potential grounds for appeal… now we tell you how to appeal and give some helpful tips.

Preparation is the key. However, you can’t make someone eligible for NHS Continuing Healthcare Funding (CHC) if they simply don’t meet the criteria.

There is an established process for appealing and there are some pitfalls to avoid.

Unfortunately, too many families make the common mistake of rushing head-long into their appeal, whether out of frustration or anger at the MDT’s negative outcome, or in naivety, thinking they must lodge their appeal immediately to show defiance and take a stand against the Integrated Care Board’s (ICB) wrong decision to refuse their relative CHC Funding. That can be a huge downfall.

Premature notification to the ICB without preparing your appeal case in advance and having all your ‘ducks lined up’, can be a naïve and very costly mistake – ruining many a good appeal.

After the MDT assessment, the ICB is expected to write to you within 28 days formally setting out its decision and providing you with a copy of the Decision Support Tool (DST) and rationale.

If the decision is negative, i.e. refusing an award of CHC Funding, then the letter also should state that you have 6 months to appeal the negative outcome and confirm steps for doing so.

Watch out! Sometimes, ICBs get it deliberately wrong, and will insist on a much shorter period to lodge your appeal – say within one month. This is perceived as an unfair tactic to pressure vulnerable families or put them off from appealing. There is simply no excuse to impose a shorter timescale than the standard 6 month period, which is statutorily preserved.

So, if the letter states any lesser period than 6 months, you must tell the ICB that you will not be pressured into complying with their unilateral unlawful time limits and that you will lodge your appeal within the usual 6 month period (assuming you are going to appeal). Don’t be bullied! You will need this time to prepare your appeal diligently and carefully to have the best chance of success.

Pre-Covid, once notified by the ICB of a negative decision, it could take 18 months (sometimes longer!) to get an appeal date. Covid just added further delays to compound the existing problem and created large backlogs of cases sitting in a pile waiting appeal. But, it seems in more recent times, perhaps after considerable pressure from the Government to catch up and process appeals much quicker, we have noticed a dramatic increase in the speed in which ICB’s are turning appeals around.

Most ICBs are much more efficient, astute and proactive than ever before. Once you trigger an appeal, many ICBs will press the ‘appeal button’ and steam ahead immediately, putting you on the back foot. If you’re not actually ready, then that might just be tough luck as the ICB may not be willing to be flexible and accommodate any change of date. The current attitude is more along the lines of: “You wanted an appeal, well here it is! See you there!” So, before you lodge your appeal, make sure you are fully ready and don’t prejudice your own case.

Some ICBs may be more flexible than others depending on the reasons why you want to adjourn the appeal meetings. If the proposed date is inconvenient, then say so immediately, but you’d better have a good reason.

Remind them that the process is intended to be ‘person centric’ – putting the individual at the heart of the process. You are entitled to be present at the appeal meetings, and indeed we strongly recommend you are – whether representing yourself or as an advocate for your relative. So argue that the meeting(s) shouldn’t go ahead without you and, to do so, will be an abuse of process.

However, don’t be surprised if the ICB says, ‘No’, the date is fixed and will proceed regardless.

Appealing a negative MDT decision is to the same local ICB who just rejected your relative’s application for CHC Funding – hence it’s called Local Resolution.

Lodge your appeal in writing as directed in the outcome letter (usually this means writing to their NHS Continuing Healthcare Department at the ICB). Each ICB will have its own local resolution process and timescales. More efficient ICBs will now try and catch you off-guard and give an early meeting date.

The Local Resolution appeal process can be thought of as a 2-stage process.

First there is a preliminary informal meeting, often called the “Clinical Call” – a two-way discussion at local level, with a representative of the ICB, which aims to resolve  your concerns, in the hope you will drop your appeal. This is a preliminary opportunity (which used to be optional) for you to have your say and explain why you disagree with the finding of ineligibility. We hear anecdotally that some ICBs had previously imposed strict and unrealistically short timescales (e.g. 20 minutes) to discuss matters; and if you couldn’t persuade them to change their decision in that time, the original negative decision stood and you were shown the door! That was simply inadequate and this unfair process backfired, as it merely provoked a plethora of appeals to NHS England, costing the ICB more time and resources.

Generally, this preliminary meeting, albeit optional, was considered a waste of time and breath and was often skipped. It left families feeling hugely frustrated because the chances of persuading the ICB’s representative(s) to recommend changing their own decision were slim at best, even where it seemed obvious to all (including the NHS representatives) that the negative decision was so blatantly wrong. Moreover, those representing the ICB at this ‘talking shop’ rarely had sufficient authority to alter the decision anyway. So, it simply became an administrative step to say the ICB had engaged with the family, demonstrated an air of transparency and co-operation, and done their bit – box ticked – even if most families had no idea what was going on and whether the ICB’s rationale for its decision was poorly reasoned or not. Ultimately, the negative decision still stood; no award of CHC Funding. Job done, and the ICB’s budget protected.

However, we now understand that some ICBs have made this a mandatory step. So, we suggest that you attend with an open-mind but don’t be surprised if you get railroaded into a corner and the decision remains unchanged.

The second stage of Local Resolution is a more formal review by the ICB’s appeal team, with a reconsideration of the Care Domains and 4 Key Characteristics. To improve chances of success, you should provide detailed written submissions, setting out the ICB’s failings and positively asserting your relative’s needs in the Care Domains, and setting out your argument for eligibility under the 4 Key Characteristics.

Some ICB’s now use the Local Resolution stage as a mini version of an appeal to NHS England’s Independent Review Panel (IRP). The Local Resolution Panel may sit with 3 or more people from the ICB at different levels; some ICBs also invite a representative of the Local Authority (usually a Social Worker). The rationale being that devoting more careful scrutiny to a local appeal might cut down on the number of cases being appealed to IRP (and improve their reputation) and save the ICB time and resources – as well as NHS England having to consider valid appeals.

A full written record will be made of the Local Resolution meeting and the ICB will decide on the next steps – either to uphold its original negative decision or to overturn it and award CHC Funding.

Therefore, the Local Resolution meeting presents your first real opportunity of securing a successful appeal and, as such, needs careful thought and planning if you want to try and maximise your chances of success. If you succeed here, you can secure much needed CHC Funding for your relative and stop them from paying huge monthly ongoing care fees. The savings can be simply enormous!

So do give your appeal the attention to detail it, and your relative, deserves, otherwise all their hard-earned savings, assets and inheritance planning could soon rapidly disappear to pay for their daily care needs.

Look at the MDT’s Decision Support Tool (DST) and the areas where you believe your relative’s needs have been understated. Identify any significant needs you believe have been overlooked, minimised or omitted. Refer to verifiable, dated evidence wherever possible. These are the key battle-ground areas you need to challenge on appeal to help build up an overall picture of greater care needs than portrayed by the ICB’s DST at the MDT.

Ask the ICB for a copy of all the records the MDT considered when completing the DST.

You need to get hold of all your relative’s care home, GP and treatment records, and consider the nature, intensity, complexity and unpredictability of the care required to meet their needs.

Tip 1: Look at what entries the NHS assessors have recorded in their DST and compare them with the records you have. Are the entries fully recorded as written, or merely paraphrased, or summarised, giving a misleading or inaccurate reflection of the actual care provided?

Tip 2: Look for missing entries that have been omitted from the DST under each Care Domain. What may seem an irrelevant or an innocuous entry might actually be repeated (or variations thereof) which, if included, could present a much higher level of overall need due to frequency (intensity) or complexity to manage it.

Tip 3: Think about what other information you know about your relative’s care needs, which isn’t recorded, or adequately recorded, in the records, that would assist?

Often due to pressure of time, desire, language skills (or skeptically to cover up shortcomings), the care home records can be woefully incomplete. That can work against you as what is expressly stated in writing on paper tends to prevail over what is unwritten. Poor record keeping can ruin a good appeal case – unless it is obvious that the medical conditions presenting require more intense and complex care than is stated.

June’s feature on flawed CHC assessments and the importance of good record keeping

Appealing is a strenuous task and can easily consume many hours of your time. We would recommend that you seek expert help here to collate all the relevant records, review them in detail in consideration with the DST, and then draft your written appeal submissions. The same professionals can also act as your advocate and represent you at the Local Resolution appeal meeting to ensure continuity and that all your arguments are heard, and the best case is put forward. Some professionals will offer to draft the appeal submissions for you, so you can use them to do your own advocacy at the appeal, if you prefer.

Despite the CHC appeal process supposedly being devised for the lay person to do themselves (because it’s not intended to be an adversarial process), and the NHS National Framework stating it’s your choice whether to have an advocate represent you given the process is to focus on the individual’s needs – make no mistake, it can be often quite contentious and confrontational – and the ICB’s representatives will invariably fight their corner to uphold the negative decision made by their colleagues.

What’s more, the chances of understanding what is needed to secure CHC Funding, and knowing how to go about the process, requires some mental gymnastics and can be very frustrating. This is not a ’Judge Rinder’, reality show where contestants turn up to argue a trite dispute over a £100 loan (or was it an outright gift?). The stakes are far higher. We are dealing with potentially being awarded a fully-funded free CHC care package, paid for 100% by the NHS, to cover the cost of all your relative’s health and social care needs, including their care home accommodation. Some care homes are charging £20,000 a month! So, we repeat…preparation is paramount.

Whilst some families do win on appeal on their own without representation, you really have to know how to ‘play’ the NHS’s CHC game and get to grips with the National Framework to have the best chance of success. Even then, there is just bland guidance but no practical tips to help families understand how to go about winning and the level of detail and knowledge required.

Our book “How to Get The NHS To Pay For Care” gives practical tips and guidance and you can read many more articled absolutely free on our Care To Be Different website.

We have been contacted by many families over the years who have tried and failed spectacularly against the well-oiled ICB appeal machine. We estimate the percentage of those who go it alone and succeed, is very low.

If you don’t succeed at LRM, and you remain dissatisfied with the outcome, you then have another 6 months from the negative outcome decision to appeal to NHS England. This is the first appeal to a truly independent body.  Read our next blog in Part 2 coming soon to find out more…

If you have had a bad experience at Local Resolution, share your comments with others below…

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:

1. Breathing*
2. Nutrition – food and drink
3. Continence
4. Skin integrity (including tissue viability)
5. Mobility
6. Communication
7. Psychological/emotional needs
8. Cognition
9. Behaviour*
10. Drugs/medication/symptom control*
11. 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…

In order to qualify for NHS Continuing Health Care Funding (CHC) – free NHS-funded care – you need to establish that you have a ‘Primary Health Care Need’ (PHCN).

There is no legal definition of what a PHCN is. But, if the care required is predominately social in nature, for example, your relative needs help with daily activities such as getting dressed, managing personal hygiene, shopping, household tasks, managing money and their personal affairs, the provision of care is likely to be the responsibility of the Local Authority (Social Services Department) under the Care Act 2014.

The care they provide is ‘means-tested’, which means that your financial circumstances will be taken into account.

The Local Authority will not contribute to care unless you have savings or investments below their upper capital threshold of £23,250. They will also take into account any income, for example from pensions. If your means are above the limit, you will have to self-fund your own care. Over the years, there have been numerous articles in the press and radio-chat discussions with frustrated callers, who have told of personal heart-rending stories when selling their parents’ home to pay for their care. No government has yet successfully tackled the social care funding crisis and avoiding the need to sell homes or liquidate assets and savings to pay for care. There has been much talk over the last few years of the government introducing a cap on social care fees (April 2020 and October 2023), but despite two recent attempts to introduce it, the proposed reforms have been delayed yet again, until October 2025 (so far!). Families who fall above the £23,500 current threshold will have to continue to find the funds to pay for care privately.

However, the position is different if you are found to have a PHCN i.e. “the main aspects or majority part of the care they require is focused on addressing or preventing health needs” – in which case, care is outside the remit of what the Local Authority can legally provide and has to be provided by the NHS instead.

If your relative is found to have a PHCN, the NHS will be responsible for providing for ALL of their assessed healthcare and associated social care needs, including accommodation, if that is part of the overall need, regardless of the amount of savings or investments that they have. As the focus is on health needs, personal finances should never be part of the discussion.

So, whether an individual’s needs are found to be social care or healthcare needs, can impact hugely on a their finances – depending on who has to pay for their care.

Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Part 2 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

The common problem is that there is little publicised about CHC Funding and you really have to be  ‘in the know’ to access it – or else, you could unwittingly be self-funding for years and quickly erode all your hard-earned savings! For more information around the subject, read these helpful blogs:

Why is CHC always overlooked? Help spread the word…

Channel 4 News Spotlights The Complexities And Frustrations Of Claiming NHS CHC Funding

‘Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent…’

To determine whether an individual has a PHCN you have to look at the overall picture and consider the totality of their needs. The assessment process is carried out at a Multi-Disciplinary Team Meeting using the NHS’ Decision Support Tool (DST). The DST gives some useful guidance to help establish whether a PHCN exists.

There are four ‘Priority’ health care needs described within the DST that should automatically give rise to a Primary Health Care need, as follows:

1). Breathing: Unable to breathe independently, requires invasive mechanical ventilation.

2). Behaviour: Challenging’ behaviour of a severity and/or frequency and/or unpredictability that presents an immediate and serious risk to self, others or property. The risks are so serious that they require access to an immediate and skilled response at all times for safe care.

3). Drug Therapies and Medication: Has a drug regime that requires daily monitoring by a registered nurse to ensure effective symptom and pain management associated with a rapidly changing and/or deteriorating condition.

OR Unremitting and overwhelming pain despite all efforts to control pain effectively. 

4). Altered states of consciousness: Coma or ASC that occur on most days, do not respond to preventative treatment, and result in a severe risk of harm.

The first of the situations above (Breathing) is the only one where there is no debate to be had. The patient will be on a ventilator with no ability to breathe independently.

The situations at (2) to (4) all have factors that need to be proven, and are therefore open to interpretation. This is where, the guidance and support of someone with the expert knowledge of CHC Funding can be invaluable. Otherwise, families might find themselves struggling to make themselves heard.

Here’s an example of how points (3) and (4) might be applied:

Take ‘James’, a patient on anti-convulsants, rescue medication and oxygen therapy to manage epilepsy. James has daily seizures and needs daily monitoring to decide when/whether to administer rescue medication and oxygen. This case could be argued using point (3) above. The seizures give rise to a ‘rapidly changing condition’ i.e. when the seizures occur a registered nurse needs to ensure effective symptom control by administering oxygen to keep the patient breathing during the seizure and/or to bring the seizure under control with the rescue medication.

In addition, or in the alternative, it could be argued that James meets the criteria at point (4). James’ continued frequent seizures, despite his preventative daily medication/treatment is not controlling the condition (i.e. the epilepsy). James is at severe risk of harm due to the potential for brain damage, cardiac arrest or death. To argue the points under both (3) and (4), a chart, or record, identifying the dates, duration, type of seizures and what remedial action was required, would be helpful to evidence the ongoing care needs.

In addition to the four ‘Priority’ instances noted above, there are many other situations, where a combination of ‘Severe’, ‘High’, ‘Moderate’ or ‘Low’ care needs recorded on the DST may give rise to a PHCN. These situations need to be individually argued based on the four Key Characteristics namely: Nature, Complexity, Intensity and Unpredictability of the individual’s health care needs.

The National Framework for NHS Continuing Healthcare Funding provides definitions for Nature, Complexity, Intensity and Unpredictability as follows:

Nature: This describes the particular characteristics of an individual’s needs (which can include physical, mental health, or psychological needs), and the type of those needs. This also describes the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.

Intensity: This relates to both the extent (‘quantity’) and severity (degree) of the needs and the support required to meet them, including the need for sustained/on-going care (‘continuity’).

Complexity: This is concerned with how the needs present and interact to increase the skill required to monitor the symptoms, treat the condition(s) and/or manage the care. This may arise with a single condition, or it could include the presence of multiple conditions or the interactions between two or more conditions. It may also include situations where an individual’s response to their own condition has an impact on their overall needs, such as when a physical health need results in the individual developing a mental health need.

Unpredictability: This describes the degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the individual’s health if adequate and timely care is not provided. An individual with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.

Whilst these descriptions are helpful to a certain extent, there is still a lot to understand and specific ways in which to present the care needs and how they interact with one another in order to establish a PHCN.

The four Key Characteristics will be different for each individual. Each case is fact specific. So it is simply not possible to compare one person’s needs with another, however tempting and obvious it might seem. We often hear people say (possibly quite wrongly) that their parent is ‘worse’ than another person they know who is CHC Funded. Such comparisons are not helpful and do not create a precedent.

This is a complex area to understand, with subjective interpretation of eligibility criteria set out in the DST, needing to be argued in a specific way depending on the case. We can help you to find your way through the process and access professional support to take away the stress and confusion.

Is your relative entitled to free NHS Funding for their care?

Let us assist you in determining whether you or your relative has a Primary Health Care Need. Browse our Care To Be Different website for lots of free information and resources or get in touch if you have a pressing problem and need some help.

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

Retrospective claims for CHC Funding – Claim back monies already paid.

NHS Continuing Healthcare Funding (CHC) is free funded care paid by the NHS for individuals who have a ‘primary health need’. If you meet the CHC assessment criteria and have a primary health need, then the NHS is obliged to pay for all your care fees, including accommodation, whether at home, in a care home or other care facility.

Retrospective

Sometimes claims for CHC Funding are made retrospectively, too i.e., after the individual has already paid for care fees from private means e.g., the sale proceeds of their home.

Depending on the circumstances, retrospective claims for CHC can be made whilst the individual is living (e.g. waiting for a CHC assessment, or if in receipt of Funded Nursing Care), and/or after they have passed away.

If your relative has never been assessed by the NHS for CHC Funding, they may be entitled to make a retrospective claim for previously unassessed periods of care. However, at present, these claims can only recover care fees going back to April 2012. But, that could still amount to many hundreds of thousands of pounds for longer periods of care.

Or if they were assessed, but that assessment was flawed, done incorrectly or simply not up to scrutiny – leading to a refusal to award CHC – then consider appealing! But note, there is a strict 6-month time limit from the date you receive the negative outcome decision.

What happens next if you have successfully made a retrospective claim and your relative has been awarded CHC Funding?

Reimbursement

Well, firstly, the NHS Integrated Care Board (ICB) should write to you promptly with their outcome letter confirming the period of eligibility awarded. They will also ask you to provide proof of payment of the care fees paid so they can calculate the exact sum to be reimbursed.

Proof

Usually the ICB will require invoices from the care provider/care home, a statement of account from the care home, and bank statements covering the award period. This can be a lot of paperwork to collate and can prove a real headache if you haven’t kept the documents handy, or the care home has deleted the records or since closed, or the bank hasn’t retained them because they are over 6 years old. There are ways round this to satisfy the ICB, but it is not as good as having the original paperwork, and can lead to lower pay-outs. In such circumstances, the ICB will probably offer you their standard ‘bed rate’ for that care home, which will inevitably be considerably less than the actual amounts paid for care.

In some cases, the ICB may also ask you (yet again!) for proof of your status to act (i.e. Lasting Power of Attorney for living patients, or a copy Will and Grant of Probate for deceased patients) together with updated proof of your ID and address. Unnecessary? Of course, especially so, when most of these documents will have already been provided to the ICB at the outset when launching the retrospective claim! But there is often no way round this superfluous bureaucracy and added delaying tactics; so rather than argue, it is far easier just to provide the documents again, because you won’t bypass their red tape.

What Evidence Do I Need To Prove My Claim For Past Care Fees Paid?

Interest

According to the NHS Redress Guidance, the purpose of restitution (i.e. reimbursement) is to put the individual back in the position they would have been but for the ICB’s maladministration. Translated, this means that your relative is perfectly entitled, as of right, to interest on the restitution monies to be reimbursed – dating back to the time of the first payment. That can amount to a significant sum, sometimes almost as much as the actual restitution sum itself.

Don’t be fobbed off if the ICB tries to get away with it and omits or declines to pay you interest. Quote the NHS Continuing Healthcare Refreshed Redress Guidance which came into effect on 1^st April 2015, below, which says:

“1.4… where maladministration has resulted on financial injustice, the principle of redress should generally be to return the individual to the position they would have been in but for the maladministration which occurred.

1.5 This guidance recommends that the Retail Price Index is the appropriate interest rate to apply.

2.4 The purpose of redress is solely to restore the individual financial position they would have been in had NHS Continuing Healthcare been awarded at the appropriate time.”

After all, had the individual been assessed at the outset, or assessed correctly, they would not have needed to pay for their care privately and could have put the money to alternative use or even invested it, whereby it would have increased in value. So don’t be bashful. The entitlement to interest is automatic and should not be withheld.

Retrospective Review Claims – Everything You Need To Know About Claiming Interest

Checking the offer

The ICB will make an offer of the sum to be reimbursed with added interest. In addition, the ICB should be transparent and freely disclose their calculation showing how they achieved this sum, the interest element added, and the RPI rates used. If the ICB only provide an offer letter without their workings, you should ask for it. How can you possibly know whether the offer looks reasonable without seeing how they’ve calculated it! So don’t be afraid to insist on seeing a breakdown if one isn’t provided.

Unfortunately, each ICB’s finance department seems to adopt an individual approach to calculating interest. Some are simple, clear and relatively straightforward; others have invented a whole new science around calculating interest, requiring telepathy and a degree in mind-reading combined with Further Maths!

There is no consensus of uniformity across the country as to how interest should be calculated – other than to say it should be done using RPI rates. So we recommend that you check their calculation and methodology carefully to ensure it looks reasonable and that you are not being short-changed. Do the figures presented stack up? Have the correct RPI rates been used? Are all totals added up correctly?

You will usually be asked to sign an agreement accepting the amount offered in full and final settlement of the CHC period awarded. So do check it carefully before committing to accepting an offer. If you have any doubts, contact the ICB and ask them for clarification or an explanation.

If you aren’t confident in doing it yourself, you can always seek advice to be sure the ICB aren’t trying to pull the wool over your eyes and that you are getting your full entitlement to interest.

Note: Due to an ongoing dispute between HMRC and the NHS, income tax on the interest element calculated will be deducted at 20% and withheld by the ICB pending the outcome of this matter. If the NHS are successful in arguing that tax isn’t payable, then the 20% retained by the ICB should be repaid to you. However, at present, there is no end date for this dispute.

If you do mount a challenge as to the ICB’s methodology when calculating interest, the typical response is, “That is the way we have always done it and there is no reason to change.” But, of course, that doesn’t necessarily make it the best way of calculating interest in your favour and, in some cases, can mean families losing out financially. ICBs are notoriously intransigent when it comes to challenging their methodology, and from experience, you are never going to convince them to change their immutable ways. So, in practice, it is a case of accepting the basis of their methodology however convoluted it might appear  – as mounting a challenge isn’t necessarily a productive use of your time and inevitably just prolongs payment. But, as above, do still check their maths is correct.

Claiming care fees post-death

Issues can arise where some ICBs argue that they are only liable to reimburse care fees for the awarded period of CHC. That is usually correct.

But take a hypothetical scenario where, for example, ‘Mrs Smith’ is found eligible for CHC, retrospectively, for the period 01.04.2018 to the date of her death on 31.10.21.

Ordinarily, the ICB would only be liable to reimburse care fees during this period awarded.

However, Mrs Smith’s contract with the care home states that she has to pay 10 days’ fees post-death (for cleaning) amounting to £1250. However, the ICB, refuse to reimburse these additional days post-death as part of restitution and argue that this is her responsibility under her contract, not theirs.

What should Mrs Smith’s family do?

Firstly, they must stand their ground and contest this and, if necessary, raise a formal complaint with the ICB.

Secondly, quote the NHS Redress Guidance above– stating that the purpose of restitution is to put the individual back to the position they would have been in but for the ICB’s maladministration. I.e had Mrs Smith been assessed (or assessed correctly and robustly) at the outset, she would have been awarded CHC Funding at that time. As such, she would NOT have needed to enter into a private contract with the care home. As a result she has therefore suffered financial hardship by paying care fees unnecessarily. Instead, what would have happened is that the ICB would have entered into a contract with the care home at the outset to pay for Mrs Smith’s care fees, and would have stipulated that such payment ceases immediately on death. Therefore, Mrs Smith is entitled to full reimbursement of £1250, plus interest!

If you meet with resistance from the ICB, we suggest that you seek professional advice immediately and, if necessary, take the matter to the Parliamentary and Health Ombudsman. Do not let the ICB get away with it.

Retrospective claims – 3 New Tricks To Watch Out For!

Late payment

Under clause 3.5 of the NHS Redress Guidance, the ICB has an obligation to make prompt payment once the eligibility decision for CHC has been reached. So, don’t let the ICB drag matters out. Insist on prompt payment. If there is a dispute, request an interim payment for those sums that can be agreed and then deal with the outstanding matters separately. But don’t let the ICB withhold or refuse to make payment until all issues have been finally resolved – as that is contrary to the Guidance and, arguably, tantamount to blackmail.

Summary

Succeeding in getting the ICB to award CHC Funding retrospectively is only part of the equation.

Proving the amount of restitution to be reimbursed can be challenging, too. So, if pursuing a retrospective claim, we strongly recommend that you get your documentary proof together at the outset whilst the evidence is hopefully still available and that will save time later on if your CHC application is successful.

Getting paid the correct restitution sum can involve mental gymnastics, so do check the ICB’s offer carefully, and, if in doubt, get help!

For more reading on the subject:

CHECK to see if you are entitled to reclaim your care home fees?