There are a number of tiers, or stages, to go through when you are making/appealing a decision for Continuing Health Care Funding (CHC). Each one can cause tears!

The tiers to success are in sequential order. In Tears within Tiers Part 1, we looked at the first three stages and the potential frustrations that you might experience, namely:

1. Checklist

2. Decision Support Tool

3. Ratification

If you missed Part 1, click on the link to catch up quickly: https://caretobedifferent.co.uk/tears-within-tiers-the-stages-of-making-an-application-for-chc-funding/

In Tears within Tiers Part 2, we now look at the remaining three tiers:

4. Local Review

5. Independent Review Panel

6. Parliamentary and Health Service Ombudsman

4) Local Review

If you remain dissatisfied with the Integrated Care Board’s (ICB) outcome decision, rejecting your application for CHC Funding, you need to appeal.

You will have received written notification of the decision not to award funding, and will have just 6 months to lodge an appeal for a Local Review. The Local Review process is normally dealt with by the same ICB team that dealt with your Decision Support Tool (DST).  The quality of reviews varies from ICB to ICB, and case to case. The Local Review consists of a panel from the ICB, often nurses and/or managers. They listen to your reasons for appeal and can alter the levels of need awarded on the DST, and can alter the decision to ‘eligible’.

Your chances of achieving a successful outcome are greater if you have professional support from us. Failure to secure vital CHC Funding at this appeal stage can leave you paying ongoing expensive care fees and in a long queue for whilst processing your next appeal.

Potential tears:

• The Local Review can be poorly conducted. You can be left feeling unheard, frustrated and deflated. The Local Review might skim over your concerns and not address the core issues that you wish to raise. The outcome may remain ‘not eligible’ and you may feel aggrieved that this decision is still incorrect. If this has happened to you, contact us using the details given below.

Rejected for CHC Funding? Part 2: How to appeal the Local Resolution Decision

5) Independent Review Panel

If you are not successful in obtaining full funding at the Local Review, you have the right to appeal further. This next appeal stage is to an Independent Review Panel (IRP). The IRP consists of at least three members. The IRP is conducted through NHS England, rather that the local ICB.

The three members of the IRP will be from different backgrounds: one from a Local Authority (not the one that dealt with the Checklist/DST); one from an ICB (not the one that dealt with the DST/LR); and one Independent member who ‘Chairs’ the IRP.

The IRP will consider all of the evidence and can make decisions about the ICB’s process and about eligibility. This appeal stage is effectively your last real chance of being awarded CHC Funding. It is more likely that you will be successful in changing the ‘no’ decision to a ‘yes’ at IRP, if you have help. We can assist you at any stage in the process, including at IRP. Contact us for help using the details given below.

Potential tears:

• Information relating to your case is ‘Missing’. Sometimes care records cannot be found or are not provided. If this happens, there should be a note in the IRP file that confirms what steps were taken to find the missing evidence. The IRP can ask for more steps to be taken if the ICB has not tried hard enough to find the evidence.
• If GP records as missing: Check that the ICB have contacted the correct GP.
• If the care home records are missing: You can ask the care home yourself for the records, although care home records are often misplaced when the care home is no longer operating or has new management.

Why is it important to check your relative’s care home records?

Need help getting copies of your relative’s care home records?

• When you get a copy of the IRP file, which should be at least 2 weeks before the IRP meeting, check the sections of the file that records ‘missing information’. Normally, if the ICB has requested information from an outside agency and they have not had a response, it would be expected that the ICB make at least 3 requests for the information. These requests should be in writing and should be provided in the file.

Your 15 Step Guide to Understanding NHS England IRP Decisions

Only 2 Hours for an appeal to Independent Review Panel!

Attending an Assessment or Independent Review Appeal?

An exclusive Q & A interview with an IRP Chair – a rare insight into conducting your appeal and knowing what to expect on the day

• The IRP upholds the decision of the ICB: This means that you are told that your appeal has been unsuccessful. It could be that all or only part of your claim is turned down. The decision will be sent you in writing, usually within 8 weeks of the IRP. You can appeal to the Parliamentary and Health Ombudsman (PHSO).

6) Parliamentary and Health Service Ombudsman

You must have gone through an IRP in order to complain to the PSHO about being turned down for CHC Funding. Generally, you only have 12 months to lodge your Complaint with PHSO from the date you receive the negative IRP outcome. If you complain to them before the IRP has finalised their decision, your complaint will be turned away. Their contact details will be on your letter which accompanies the IRP decision.  https://www.ombudsman.org.uk/

You can complain to the PHSO using their online service: https://ombudsman.achieveservice.com/module/home?

Or you can complain to the PHSO by downloading a complaint form: https://www.ombudsman.org.uk/making-complaint/complain-us-getting-started/complaint-forms

Potential tears:

• The PHSO will generally only uphold a procedural complaint: This means that the ICB or IRP have done something wrong in the process that materially impacts on your case. For example, they have not considered material records. You will need to read the National Framework for NHS CHC Continuing Healthcare (July 2022) in order to identify procedural errors: The National Framework requires some understanding, and it is easy to get your facts wrong or to misinterpret the Framework. We can help. Contact us using the details given below.
• The PHSO will not usually overturn the eligibility decision: The best you can hope for is that they uphold a procedural complaint, that the matter is returned to the ICB for the procedural matter to be dealt with correctly, and this may result in the IRP being reconvened, or a new IRP being held. The PHSO will not alter the IRP’s eligibility decision, however unpopular or blatantly wrong you perceive it to be.
• Our experience is that the PHSO takes a long time to investigate complaints and mostly the outcome is wholly unsatisfactory! So to avoid wasting time, money and sheer frustration, we suggest you try and make sure that you get the right decision at the DST, the LRM or the IRP. We can help you at any stage.

For more background reading look at these blogs:

Part 1 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

Part 2 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

For more help, call us on 0161 979 0430 or email us at enquiries@caretobedifferent.co.uk. Alternatively, send us your query via the contact form on our website.

Don’t forget, you can access many more blogs there for free, or speak to others via our Facebook community and seek advice from those in the same position.

Did you know that you may be able to reclaim your care home fees? Not many people know that they may have already paid care home fees unnecessarily over a long period, and may be entitled to a full refund, plus interest!

If your relative has a ‘primary health need’ i.e. the main reason for their care is due to health needs (not social care needs provided by the local authority) then they may be entitled to NHS Continuing Healthcare Funding (‘CHC’). This is free funding from the NHS that is intended to cover ALL their assessed healthcare needs (including social care needs) and accommodation. If awarded CHC Funding, that could potentially save a fortune every month in care fees!

Indeed, many older retrospective claims have amounted to large six figure pay-outs by the NHS – especially with accrued interest at 8% per annum (pre -1^st April 2015). It was not uncommon for interest on these historic cases to add another 50% to the principal CHC awarded. Eye-watering sums for the NHS to repay.

So if your relative has been in receipt of care, whatever the care setting – whether in their own home, or a care/nursing home – and have not previously been assessed, they (or their estate, if deceased) may be entitled to make a retrospective claim for care fees going as far back as April 2012. We strongly recommend that you ask your local Integrated Care Board (ICB) NHS Continuing Healthcare Department to arrange an immediate assessment.

However, be aware that claiming CHC funding retrospectively will involve a careful analysis of medical and care home records to which you will need to have access.

Problems with care home records? Mind your language…

Don’t be under any illusions – the retrospective review process is complex and extremely time-consuming. Unfortunately, you need to have patience and perseverance in spades. ICBs don’t give out CHC awards lightly and will make you fight for every penny of any entitlement to CHC.

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

If you are eventually successful in getting the ICB to agree to a retrospective repayment, the burden is on you to prove your loss. For the retrospective period under consideration, you will usually need to provide the ICB with invoices and a statement of account from the care home, and bank statements. If you don’t have this information, you may face strong opposition from the ICB and struggle to get payment at all or in full. There are ways round this if you don’t have the requisite paperwork to satisfy the ICB’s bureaucracy, but the amount of reimbursement is likely to be a lot less, as you are relying on the ICB’s agreed ‘bed rate’ for that care home, which will inevitably be far lower than the actual fees paid.

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

Then there is the issue of checking the ICB’s retrospective award and whether they’ve added the appropriate amount of interest. This is an area where you may wish to seek legal advice, so that you’re not short-changed.

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

However, the majority of retrospective claims currently left in the ICB’s pipeline are now more likely to arise in the following situations:

a) Those patients who were waiting for an assessment pre-Covid i.e before March 2020 – and have got held up in a backlog of cases pending CHC review; or

b) Those patients post-Covid who have not yet been reviewed for CHC;

c) Patients in receipt of Funded Nursing Care

As such, given the shorter periods of cases undergoing retrospective reviews, the value of those retrospective awards will obviously be far smaller than the historic cases dating back to April 2012.

Are you in receipt of Funded Nursing Care (FNC)?

FNC is a weekly sum paid by the NHS as a contribution to the cost of nursing care provided by a registered nurse at a care home with nursing.

FNC should be reviewed annually or when considering CHC Funding. However, some patients remain on FNC for much longer than 12 months without ever being reassessed. If their healthcare needs had materially changed in the meantime and became more challenging, then they could be entitled to make a retrospective claim for CHC funding and seek a refund.

Don’t Miss Out On Funded Nursing Care!

Annual Reviews of CHC Funding

Similarly, for those patients already in receipt of CHC Funding, that too, should be reviewed at least every 12 months according to paragraph 201 of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.

The purpose of the review is to appraise the package of care in place and to see if it is still fit for purpose and is meeting the assessed care needs. Again, if the patient’s needs have become more challenging, the NHS package of CHC care may need increasing to meet those changing needs.

If your relative is in receipt of CHC Funding and it is working well, beware of pushing for an annual review as the ICB may reassess them and unilaterally find that their needs are not as severe as you believe, and could remove funding.

Beware! Annual Reviews can lead to CHC Funded Care being withdrawn.

Is your relative waiting for a review of their CHC care package?

The review process is entirely subjective. According to paragraph 203 of the NHS National Framework, the purpose of a review is “to focus on whether the care plan or arrangements remain appropriate to meet the individual’s needs. It is expected that in the majority of cases there will be no need to reassess for eligibility”. However, despite the stated guidance, CHC Funding is a big financial drain on the ICB budget. ICBs have to make savings and any sceptics could worry that it might seek to use the opportunity to try and withdraw funding upon reassessment!

Can CCGs Use Annual Reviews to Ration Care Funding?

Reassessments generally cause families a lot of anxiety and stress as there is always the chance that funding could be withdrawn, even if you believe your relative’s needs have not materially changed since the last review, or indeed, have become more challenging and needy. Some families take the view that if the ICB aren’t pressing for an annual review, it is better to lie low and keep the status quo.

Should funding be wrongly removed following a review, you may have a lengthy appeal battle to get it reinstated whilst having to fund your relative’s care in the meantime from private means – even selling their home. You can access professional support and advocacy to accompany you at any review. The cost may justify the outcome and give you peace of mind.

Confused? Read This Before You Start Your Retrospective Appeal for CHC Funding…

Summary:

We recommend you press for a retrospective assessment for past periods of unassessed periods of care, or if you are in a queue waiting for a CHC assessment, or are in receipt of FNC.

Don’t be afraid to seek professional help as the retrospective assessment process is daunting and time-consuming. They understand what is required to achieve success and will take the strain off your shoulders.

If your relative is undergoing an annual review, consider getting professional advocacy to support you at the review to ensure it is carried out fairly and robustly and, so that your relative gets the package of care they need – and moreover, it doesn’t get wrongly withdrawn!

Retrospective Reviews for past periods of care – avoiding fatal mistakes

For more help, call us on 0161 979 0430 or email us at enquiries@caretobedifferent.co.uk. Alternatively, send us your query via our website.

Don’t forget, you can access numerous blogs there for free, or speak to others via our Facebook community and seek advice from those in the same position.

If your relative has had their funding incorrectly removed at an annual review, leave a comment below and tell us about your experience.

Care To Be Different remains the No.1 website for free information and resources relating to NHS Continuing Healthcare Funding (CHC) – free NHS funding for individuals aged 18 and over, with complex, intense, or unpredictable long-term healthcare needs.

Looking back over 2022, as we emerge from Covid, it has still been an extremely difficult and challenging year for everyone going through the CHC Funding process. However, on a positive note, we have seen the NHS tackle huge backlogs. Most noticeably, assessments and appeals for CHC Funding are being processed more quickly to catch up for lost time. More efficient Integrated Care Boards (formerly called Clinical Commissioning Groups) are getting their act together and some, arguably, are more efficient now than ever before, despite their own challenges.

At this time of year, we wanted to express our thanks to all our readers and contributors for your continued interest in our caretobedifferent website and for being part of our Facebook community– seeking advice and help from others facing similar challenges when fighting the NHS for vital free CHC Funding.

NHS Continuing Healthcare is supposed to be ‘free at the point of need’. You pay tax and save all your life, but when you need full time healthcare, why is it so hard to access? Why do families end up selling their homes needlessly, or using hard earned savings to pay for care which should be 100% free under the NHS?

Here’s a selection of popular blogs from 2022 which have helped our readers along their CHC process:

JANUARY

Get Help Breaking Down the Decision Support Tool: Psychological & Emotional Needs

Assessing psychological and emotional needs is just one of the 12 care domains that the NHS Multi-Disciplinary Team (MDT) assessors must consider when making their recommendation of eligibility for CHC Funding. However, in our experience, this domain is not particularly well understood. Our blog gives practical guidance and information to help increase your relative’s level of need in this domain.

FEBRUARY

Rather than trudge through the formal CHC assessment process, immediate Fast Track funding can be provided in 48 hours for individuals with a rapidly deteriorating condition that may be entering a terminal phase.  

However, many families are wrongly told that NHS Continuing Healthcare funding is only available for individuals who are at the end of life. Not only is this incorrect, but it also often means that many vulnerable adults with significant healthcare needs are wrongly denied access to immediate free NHS-funded care. If you think your relative may be entitled to Fast Track funding, you must read this blog!

Continuing Healthcare Fast Track assessments – how to get a quick decision.

Post-Covid, NHS England have been striving to try and eradicate backlogs of CHC cases waiting appeal. To achieve this goal, appeal meetings are no longer open-ended and have been significantly reduced to only 2 hours! Good preparation is therefore essential to get your points over in the limited time available. Read our exclusive tips.

Only 2 Hours for an appeal to Independent Review Panel!

MARCH

Your 15 Step Guide to Understanding NHS England IRP Decisions

There are only 6 months to present an appeal to an NHS England Independent Review Panel following a negative outcome decision from a Local Resolution Panel. There is a lot of work to be done in this relatively short period. Our detailed blog helps you understand the IRP process and how you can improve your chances of being awarded CHC Funding.

Understanding What Is A ‘Well Managed Need’

The established principle of a ‘well-managed need’ is admittedly confusing due to a lack of clarity and guidance in the NHS National Framework. In our experience, many NHS assessors don’t really understand what this principle means or even how to apply it. As such, it is frequently misapplied and can lead to incorrect outcomes – resulting in families being wrongly refused essential free NHS healthcare.

APRIL

With Integrated Care Boards wading through huge backlogs of assessments post-Covid, some MDT panels were only reviewing one month’s worth of clinical records when making recommendations for CHC Funding – a far shorter period than the customary 3 months. This shorter period is grossly insufficient to get an accurate picture of an individual’s overall healthcare needs and, unfortunately, can disadvantage families! This blog provides useful tips to combat the NHS assessment system and knowing your rights.

How much clinical evidence should an MDT assessment consider?

MAY

TIPS on assessing ‘Altered State of Consciousness’ in your Decision Support Tool

This was the first blog in our new ‘TIPS’ series – aimed at helping readers who need a closer look at each care domain when completing the Decision Support Tool (DST).

ASC is one of the less familiar care domains in the DST. Typically, most cases here will involve seizures or Transient Ischemic Attacks (TIAs), Epilepsy (perhaps following a head injury or stroke) and Vasovagal Syncope (fainting).

JUNE

TIPS on assessing ‘Communication’ in your Decision Support Tool

Does your relative have cognitive impairment? Can they reliably communicate their needs, whether verbally or non-verbally, or do they need someone to interpret their needs for them? This blog provides essential help when assessing your relative’s level of communication in the DST.

JULY

If you have been told that your relative’s dementia will automatically qualify for CHC Funding, that is unlikely to be correct. Many individuals suffer with cognitive impairment such as dementia, but awards for CHC Funding are not about ‘labels’ but looking at the overall picture of healthcare needs on a holistic basis and assessing what skills are needed to manage them.

Get Help Breaking Down the Decision Support Tool: Cognition, Part 2

AUGUST

August continued the popular ‘Get help’ series for those looking for more in-depth guidance across the care domains. Technical, but packed with practical case studies to help you understand levels of care within each descriptor of the DST. For more help, we recommend you read other blogs in this excellent series.

Get Help Breaking Down the Decision Support Tool: Drug Therapies & Medications: Symptom Control, Part 1

SEPTEMBER

Incontinence and constipation can affect many residents in care daily, and involve careful management to avoid complications. Urinary Tract Infections, colostomy, or catheter care can impact on other care domains such as ‘Skin’ (leading to pressure sores), ‘Medication’, ‘Mobility’ and ‘Cognition’.  This blog offers a detailed look at this care domain with case studies to help you when assessing your relative’s levels of care in their DST.

TIPS on assessing Continence when completing your Decision Support Tool

OCTOBER

You have to read it to believe it!

Untruths, misleading or incorrect statements about your entitlement to CHC Funding can put families off pursuing their application for CHC Funding – often resulting in their relative self-funding their own care from private savings or the sale of their home, quite unnecessarily.

Our blog deals with 10 typical untruths families are told about NHS Continuing Healthcare Funding. Do any apply to you?

10 More Untruths About NHS Continuing Healthcare Funding

NOVEMBER

More Items of Fake News To Put You Off Claiming CHC Funding!

The title says it all!

Unfortunately, fake news is not just reserved exclusively for the USA. A collection of more typically false statements given to families to put them off claiming their entitlement to CHC Funding.

DECEMBER

Focus on the ‘Behaviour’ domain in your relative’s CHC assessment

Focusing on whether an individual is displaying challenging behaviour can be a pivotal point in determining their eligibility for CHC Funding.

The assessment for CHC Funding must consider how ‘Behaviour’ impacts and interacts with other care domains. For example, how does it interact with their ‘Psychological and Emotional Needs’ Does it affect continence care (‘Continence’) or cause difficulties feeding the individual (‘Nutrition’)? Does it affect moving and handling an individual who is unable to mobilise independently (‘Mobility’)? One should also consider how poor cognition (‘Cognition’) or poor communication (‘Communication’) impacts on calming the person down.

We look forward to presenting many more informative blogs next year to help you at every stage of your relative’s assessment or appeal.

You can help our Care To Be Different community by:

Spreading the word and tell others about Care To Be Different.

Searching our website with key terms or phrases to access lots more free information.

Sharing your experiences of CHC assessments process with others and leave your comments below…

Telling us 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.

“This is where the support from CTBD came in. Although we always believed he was eligible for full funding, the information from articles on the website and hints given on dealing with these assessments were vital and gave us the confidence to proceed. We had also purchased their book “How To Get The NHS To Pay For Care” which gave invaluable advice.” [Anonymous]

Wishing all our readers a happy, healthy and peaceful new year!

Thank you, from Care To Be Different!

Our recent blog 10 More Untruths About NHS Continuing Healthcare Funding has clearly resonated with our readers as we’ve come across so many more untruths recently – or fake news! – designed to put families off claiming NHS Continuing Healthcare funding (‘CHC’).

Some untruths are possibly stated out of sheer ignorance and a lack of fundamental understanding of the CHC assessment process set out in the National Framework for NHS Continuing Healthcare (revised July 2022); others are peddled by care homes and NHS assessors potentially as a means of financial-gatekeeping.

We thought it would be helpful to share some of these misleading statements below in case they apply to your care funding situation.

However, first let’s start with the basics:

What is CHC funding?

• CHC funding is free -funded care provided by the NHS for adults aged 18 and over with ‘primary healthcare needs’ i.e. needs related to the treatment, control, or prevention of a disease, illness or disability and the aftercare of an individual with these needs.
• CHC is free at the point of need.
• CHC is not means-tested and is available irrespective of an individual’s financial means (unlike social care funding provided by the local authority). So, wealth is never a consideration when assessing CHC.
• CHC is available regardless of the care setting (e.g. whether care is provided at home, in a care/nursing home or hospice).

In short, if your relative has complex, intense or unpredictable healthcare needs which meet the eligibility criteria for CHC funding then they are entitled to have all their care fees (plus accommodation and their social care needs) paid for in full by the NHS – free of charge.

CHC is often described as the’ NHS’s best kept secret’, as the NHS doesn’t openly tell you this care funding package is available and, even if you do happen to stumble across it, accessing CHC can be a complex, daunting, emotional and challenging process. In our experience, and confirmed by  numerous contributors on our Facebook page, the odds of getting CHC funding are heavily stacked against you. Sadly, many families who embark upon the CHC assessment process struggle to make it to the other end successfully, without professional representation.

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

We are in daily contact with members of the public, and too often find that they have been given incorrect information about Continuing Health Care (CHC). Here are some examples of untruths we have recently encountered:

1) Don’t bother applying because nobody gets CHC funding!

We have had several calls recently where family members have been told not to bother applying for CHC funding as they will not get it, “because no one gets it!” That is clearly an inappropriate attempt to dissuade them for applying for CHC. Yes, only a small per centage of those applying for CHC funding are ultimately successful, but how can anyone make such a misleading comment without first assessing the individual to ascertain whether they are likely to meet the eligibility criteria for CHC?

The process usually starts with a Checklist assessment – a basic screening tool used by the NHS to determine whether an individual should proceed to a full assessment for CHC funding.

So, don’t be fobbed off by such comments. Get an assessment done if you think your relative may qualify for CHC. Here’s a selection of helpful blogs on the subject:

Understanding the Checklist Assessment

Getting through the Checklist assessment – avoid these common mistakes!

Can the NHS refuse to carry out an initial Checklist?

Beware of companies offering services to assist you obtain CHC funding on the basis of helping you through the Checklist assessment. We feel that most families can follow the Checklist assessment themselves – as it is only a screening assessment and not the assessment itself. So, unless the Checklist is undertaken in an incompetent manner, those who get screened out at this preliminary stage are likely to have little or no healthcare needs.

Remember, if your relative’s needs increase, you can always ask for another Checklist to be done.

2) If you pass the Checklist for CHC funding, you are a strong candidate for CHC funding!

Again, this is not necessarily correct.

The Checklist has a very low bar, deliberately designed to screen most people in for a full CHC assessment.

However, if your relative has a positive Checklist, they will go on to have a full CHC assessment completed by a Multi-Disciplinary Team (MDT). This is the first proper assessment. Don’t be fooled by such misleading comments such as, “you’re a strong candidate”, however good you think your relative’s case may be, as the bar to success is set very high. The NHS will not part with their budgeted funds so easily, so be prepared to fight your corner.

It is only once all your relative’s healthcare needs have been properly considered by an MDT – using the Decision Support Tool – can an informed determination be made as to whether or not they will qualify for CHC funding.

We measure healthcare needs against the full MDT assessment and not against the Checklist assessment, as it provides a more accurate indication of overall healthcare needs and whether CHC funding is likely to be awarded.

Preparing for the Multi-Disciplinary Team Assessment

What Happens At The Multi-Disciplinary Team Meeting?

Don’t let the Decision Support Tool become a ‘tick box’ exercise

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

What to expect when you attend a Continuing Care assessment

Attending the Multi-Disciplinary Team meeting – some useful guidance

3) Your mother will not qualify for CHC with gangrene as it only effects the Skin domain!

More nonsense!

An enquirer had been told by a social worker that it would not be worth applying for CHC as gangrene would only affect the Skin domain. This is not correct.  Remember there are 12 care domains to be considered when assessing an individual for CHC funding (1.Breathing 2. Nutrition 3. Continence 4. Skin Integrity 5. Mobility 6. Communication 7. Psychological & Emotional needs 8. Cognition 9. Behaviour 10. Drug therapies and medication 11. Altered states of consciousness 12. Other significant care needs. Skin is only one of the domains.

A brief discussion revealed that there was significant pain with the gangrene, as well as difficulties with mobility. This would impact on other care domains, particularly, Medication and Mobility – as well as, obviously, Skin.

Remember: When considering the eligibility criteria for CHC you have to take a holistic view and look at the whole person and how their needs interact, and what level of skill and care is needed to manage all those needs.

So, to say that gangrene only affects Skin is fundamentally wrong without considering the wider impact.

Moreover, as the gangrenous condition was likely to deteriorate fast following a clinical decision to withhold treatment, it would need close monitoring due to the likelihood of the condition becoming unstable. In the circumstances, the individual may be more suited to Fast Track application for CHC.

Fast Track funding is for individuals with a rapidly deteriorating condition that may be entering a terminal phase. If successful, CHC Funding for your relative’s care needs should be put in place within 48 hours of assessment. For more information read these blogs:

How To Fast Track The Continuing Healthcare Funding Process.

4) You need SIX severe levels of Need to be eligible for CHC!

This is absurd and totally incorrect.

Recently, we had an enquirer who had been told by the care home manager, that it was not worth making an application for CHC funding for a relative as she ‘would not qualify’ (see 1 above).  The manager said that the patient needed to score SIX ‘Severe’ levels of need on the Decision Support Tool in order to qualify for CHC funding.

The Decision Support Tool makes it clear that TWO or more ‘Severe’ levels of need will normally give rise to a recommendation for CHC, but funding can also be given with ONE or NO ‘Severe’ levels of need. As above, it’s all about the overall picture of need.

It appears that this misinformation was an attempt by the care home manager to put the family off from making an application. Unless borne by ignorance, the most likely reason is that care homes usually get far more money from self-funding individuals i.e. those paying for their own care, than they will receive from the NHS for a CHC funded patient. It is therefore not always in the care home’s financial interests to inform residents as to the availability of CHC funding or to help them with the assessment process.

5) Only one Carer can be paid for under CHC funding!

This is blatantly incorrect, too!

The NHS told an enquirer that they could not get CHC funding for more than one carer.  That’s news to us and totally wrong! In this scenario, their relative was already in receipt of CHC funding, but it wasn’t enough to cope with their  increasing healthcare needs. They needed a second carer. The NHS said they could only fund one carer through CHC funding and flatly refused to pay for a second carer.

This is a worrying state of affairs as the NHS assessors should of course know that CHC package of care should be sufficient pay for all the individual’s assessed healthcare needs – whether those needs are met by just one carer, two carers or even more! Put simply, there is no bar.

We would suggest that if you have been such lies by your care home manager, you give us a call.

“So will you be self-funding?”

How To Avoid Selling Your Home To Pay For Care…

Funding your relative’s care – who pays?

Please let us know if you’ve had any of these things or similar said to you which has put you off pursuing your relative’s right for CHC funding.

Here are some other blogs where misleading information has been given to families:

The 10 Most Outrageous Excuses For Not Having An NHS Continuing Healthcare Assessment

Has your relative been “optimised?” NHS invent more delays to avoid CHC Funding…

Watch out for the CCGs’ latest tricks to save costs

Vital Information About Paying For Care

My Dad Has Dementia – So Will He Automatically Qualify For CHC Funding?

Your mum has ‘social’ needs, so she won’t get CHC funding…

Let’s Talk Fast Track! Vital NHS Funding Withdrawn After 3 Months – The Latest NHS Controversy…

If you need help with an MDT assessment, appeal or advocacy support don’t hesitate to contact us or get help from one of our specialist Advice Lines to discuss your case today.

Plus, don’t forget, there is plenty of free information and resources to help you on our Care To Be Different website.

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.

This article is based on an older blog which has been updated in light of the recently updated National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care.

If families are told untruths about NHS Continuing Healthcare funding (CHC) or are subjected to flawed funding assessments and decisions, it can have devastating financial consequences.

A negative outcome refusing or withdrawing CHC funding could result in families paying many thousands of pounds each month for their relative’s care fees, quite unnecessarily, and often resulting in them self-funding their care from private savings or the sale of their home.

Similarly, misleading or incorrect statements about their entitlement to CHC, could put families off even seeking an assessment for eligibility or pursuing a valid grounds for appeal.

If you or a relative are currently going though the NHS Continuing Healthcare assessment process, read on. We’ve listed here 10 typical untruths families are told about NHS Continuing Healthcare funding. They’ll help you recognise and challenge false information you may be given.

10 more untruths about NHS Continuing Healthcare:

1. You are not allowed to see any of the assessment notes

If it’s you who is being assessed, then of course you are entitled to see the assessment notes and the decision-making rationale for the CHC funding decision.

Alternatively, if you are acting as your relative’s representative, you are also entitled to see the notes and decision-making rationale. Without this, you are being denied the ability to properly consider appealing any decision that denies funding. So, insist on being sent a copy.

Read: Know your rights – Appealing the CCG’s refusal to grant CHC funding

Your position will be strengthened if your living relative has given their express consent or you are appointed as their Attorney under a valid Lasting Power of Attorney. Failing which, you can argue ‘best interests’.

Do you need legal capacity to assist your relative’s claim for NHS funding? Arguing “BEST INTERESTS”.

Essential: Have You Got A Power Of Attorney

2. You are not allowed to attend CHC assessment meetings

Many families are told this, and it’s not correct. Indeed, the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care makes it very clear that the assessment process is intended to be ‘person centric’ – i.e. the individual is at the heart of the assessment process.

What’s more, families should be fully involved in the process and that they should have the opportunity to participate and give their input.

The National Framework sets this out clearly and here are a few examples you can quote:

“9. The process of determining eligibility and planning and delivering services for NHS Continuing Healthcare and NHS-funded Nursing Care should be ‘person-centred’. The individual’s views and/or those of their representative should be sought and considered throughout the process, and appropriate care and support provided to meet the assessed needs as defined in the care plan…”

“68. Individuals being assessed for NHS Continuing Healthcare are frequently facing significant changes in their life and therefore a positive experience of the assessment process is crucial. The process of assessment of eligibility and decision-making should be person-centred. This means placing the individual at the centre of the assessment and care-planning process.”

“69. There are many elements to a person-centred approach, including:

1. a) ensuring that the individual and/or their representative is fully and directly involved in the assessment process;
2. b) taking full account of the individual’s own views and wishes, ensuring that their perspective is incorporated in the assessment process;
3. c) addressing communication and language needs;
4. d) obtaining consent to any physical intervention/examination as part of the assessment process (where the individual has capacity to give this);
5. e) obtaining consent to the sharing of personal data with third parties (e.g. family, friends, advocates, and/or other representatives) (where the individual has capacity to give this);
6. f) dealing openly with issues of risk; and
7. g) keeping the individual (and/or their representative) fully informed.”

“71. Assessments of eligibility for NHS Continuing Healthcare and NHS-funded Nursing Care should be organised so that the individual being assessed and their representative understand the process and receive advice and information that will maximise their ability to participate in the process in an informed way. Decisions and rationales that relate to eligibility should be transparent from the outset for individuals, carers, family and staff alike (refer to paragraphs 130, 179- 181).”

3. You are not allowed to speak during assessment meetings

This is complete nonsense!

You have every right to be heard and to fight for your relative’s case on eligibility, and make all the verbal and written points you want to make to support their case.

Points 1 and 2 above, make it very clear how important it is that the person being assessed and/or their representative are fully involved, informed, empowered and encouraged to play a central role, and contribute to the assessment and decision-making process. Make sure you familiarise yourself with the National Framework. Here’s a selection of paragraphs that will help you:

“74. In the spirit of the person[1]centred approach, practitioners should make all reasonable efforts to seek the participation of the individual (or their representative) for the assessment and review process for NHS Continuing Healthcare, during each stage of the process. For a comprehensive assessment, the best evidence available at the relevant time should be considered. This should involve consideration of the individual’s (or their representative’s) view, and they should be empowered and assisted to participate. Throughout the process, this person-centred approach should be embedded in all decisions which relate to the individual’s needs assessment, and their care planning.”

“141. ICBs may use a number of approaches (e.g. face-to-face, video/tele conferencing etc.) to arranging these MDT assessments in order to ensure active participation of all MDT members, the individual and their representative, and any others with knowledge about the individual’s health and social care needs as far as is possible. It is best practice for assessors to meet with the individual being assessed, ideally before the MDT meeting, and any arrangements should include consideration of the best options for the individual, following a person-centred approach…”

“PG 24 What is the role of the individual during the multidisciplinary team process?

24.1 The individual or their representative cannot be members of the MDT. However, they should be fully involved in the process and be given every opportunity to contribute to the MDT discussion.”

PG 33 What happens if the individual or their representative disagrees with any domain level when the DST is completed?

33.1 Whilst the individual and/or their representative should be fully involved in the process and be given every opportunity to contribute to the MDT discussion, the membership of the MDT consists of the practitioners involved (refer to paragraphs 139-143 of the National Framework regarding the composition of the MDT). The approach described in Practice Guidance note 34 applies to disagreements between practitioners and not when an individual or their representative disagrees with individual domain levels chosen in the completion of the DST. However, concerns expressed by individuals and representatives should be fully considered by reviewing the evidence provided. If areas of disagreement remain these should be recorded in the relevant parts of the DST.

4. You are not allowed to take anyone with you to assessments

Again, this is nonsense. As you can see from the above, you can take someone with you to support you, to be your advocate or just provide a listening ear or notetaker – even if you are already representing your relative.

You can even take more than one person if you want to.

It is courteous to let the NHS Assessors know who will be coming with you, but don’t let them convince you that you can’t bring anyone.

If you are denied access or an advocate, that will give grounds for appeal.

Can The MDT Panel Refuse To Proceed If I Have An Advocate?”

5. If you take a solicitor with you, the solicitor is not allowed to speak

Again, this is not true. See the National Framework:

PG 58 Do individuals need to have legal representation during the NHS Continuing Healthcare eligibility process?

“58.1 No, although individuals are free to choose whether they wish to have an advocate present, and to choose who this advocate is. This National Framework (supported by Standing Rules Regulations and Care Act 2014 Regulations) sets out a national system for determining eligibility for NHS Continuing Healthcare. The eligibility process is focused around assessing an individual’s needs in the context of the National Framework rather than being a legal or adversarial process.

58.2 If the individual chooses to have a legally qualified person to act as their advocate, that person would be acting with the same status as any other advocate nominated by the individual concerned. “

In short, your solicitor or other (legal) advocate will have exactly the same rights and status as any other kind of non-legal representative to speak and ask questions about the individual assessment process taking place.

Given that the CHC assessment process can be a daunting, complex and emotional experience as you battle with the NHS for your relative’s entitlement to CHC funding, we recommend you consider seeking professional guidance and advocacy support.

6. Local authorities/councils never get involved in the NHS Continuing Healthcare process

Local authorities/councils MUST be involved in the Continuing Healthcare process! How else will they comply with the National Framework (the Care Act 2014 and the Coughlan case) be able to decide if a person’s care is beyond their legal remit?

For more information, read these helpful blogs:

The Coughlan case and Grogan case: Your 9-point checklist for NHS Continuing Care

Part 1: But Pamela Coughlan is Not Really Eligible for CHC, is She …?

Part 2: Pamela Coughlan – Needs of a “Wholly Different Category”

Part 3: Pamela Coughlan – Ancillary and Incidental to the Provision of Accommodation

7. Local authorities/councils never get involved in the Continuing Healthcare process if a person has savings

Nonsense. A person’s money/assets have absolutely nothing to do with the NHS Continuing Healthcare process. It is about healthcare needs ONLY – and the same answer as point 6. above also applies.

8. NHS Continuing Healthcare funding only covers 2 hrs care a day

We frequently hear of families being told that NHS Continuing Healthcare is capped. It is not.

There are many instances where people receiving care at home are told they can only have ‘x’ number of visits per day. Again, NHS Continuing Healthcare is not capped, and it must cover ALL assessed healthcare needs, whatever those needs are – including social care needs.

See page 10 National Framework:

“11. Where an individual has a primary health need and is therefore eligible for NHS Continuing Healthcare, the NHS is responsible for providing for all of that individual’s assessed health and associated social care needs, including accommodation, if that is part of the overall need.”

9. You can’t have more than one carer

This is another false statement.

The CHC assessment will determine your relative’s eligibility for CHC funding and the package of care needed to meet their healthcare requirements. Remember, if an individual is eligible for CHC funding, the NHS should meet the cost of all their assessed care needs, however many carers it takes. Some individuals with complex, intense and unpredictable care needs may require at least 2 carers (or more) to provide, interpret and manage their day-to-day care needs, including medication and transfers. There is no cap on the number of carers.

10. The Fast Track process only applies if a person has a prognosis of less than three months

Not true. The Fast Track process applies if a person is at end of life OR in a period of rapid decline. The period of rapid decline does not have to be end of life, and there does not have to be an exact prognosis about how many days or weeks a person may or may not have left to live.

How To Fast Track The Continuing Healthcare Funding Process.

If you haven’t read the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, it’s a very good idea to familiarise yourself with it, as it will give you extra ammunition for challenging incorrect funding decisions and fighting your relative’s corner during assessment meetings.

For more background reading on CHC assessments:

Preparing for the Multi-Disciplinary Team Assessment

What Happens At The Multi-Disciplinary Team Meeting?

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

What to expect when you attend a Continuing Care assessment

Attending the Multi-Disciplinary Team meeting – some useful guidance

Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision

Preparation, Preparation, Preparation! Never Take MDT Outcomes For Granted

If you need help with an MDT assessment, appeal or advocacy support don’t hesitate to contact us or get help from one of our specialist Advice Lines to discuss your case today.

Plus, don’t forget, there is plenty of free information and resources to help you on our Care To Be Different website.

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.

What’s your experience in NHS Continuing Healthcare assessment meetings? Leave your comments below.