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2021 Year In Review

As we reflect on the past year, with all its difficulties and challenges, Care To Be Different still proudly remains the most popular and most respected, number one website for free information and resources about NHS Continuing Healthcare. Despite COVID restrictions, we have been able to produce a substantial 37 blogs and issue an average of two newsletters a month.

In response to increasing demand for information and help at every stage of the CHC process, we have also increased our range of helplines, where you can pay a relatively small charge for specialist expert advice if you need more specific help. These helplines are proving very popular, and you get to speak directly to a specialist former CHC nurse or current case-handler – depending on the nature of your enquiry.

Our book, How To Get The NHS To Pay For Care (available in paperback or as a downloadable PDF) is hugely popular for those that want instant portable access to succinct reading material on CHC funding.  And of course, there is always the option of seeking legal advice on any matter, be it a case review, help with assessment or appeal, advocacy support – all offered as a one-stop shop by Farley Dwek Solicitors.

Finally, before moving on to our annual awards, we wanted to thank you, our readers and contributors, who have taken the time to post comments on our blogs, engaged in our Facebook page,  shared your personal experiences, frustrations and challenges when pursuing CHC.

Thank you, from Care To Be Different!

Now, for a bit of end of year light-heartedness, we come to our top monthly blog awards for 2021:

January

Often misconstrued that NHS Continuing Healthcare uniquely applies to the elderly in society. It doesn’t! Read on, as you may be surprised to find out that your child may be eligible for fully funded care…

Who is entitled to CHC?

February

Despite the excellent 3-part series on the Landmark case of Pamela Coughlan and how it shaped CHC funding and the National Framework, we chose this highly topical subject as the month’s winner…

How To Avoid Selling Your Home To Pay For Care…

March

There were a number of excellent articles to choose from in this busy month, including, Why 31st March 2021 Is A Date To Look Out For? and Are You Missing Out On Your Entitlement To Care At Home? The Gunter Case… which are both well worth a read. However, due to the lack of public awareness (including those in the media), we felt it necessary to continue banging the drum and raise public consciousness of CHC, so we chose…

Why is CHC always overlooked? Help spread the word

April

Unfortunately, there’s so much misinformation about CHC and people can often be put off claiming their entitlement to NHS funded care [read:  Vital Information About Paying For Care]. But if you are new to CHC and want some general information or answers to common questions, look no further than our selected winner…

Getting Started: Some Frequently Asked Questions About NHS Continuing Healthcare

May

An essential blog packed with information to ensure you don’t get fobbed off and miss out on essential NHS Continuing Healthcare Funding…

10 Tips About Care Fees You May Not Know

June

Our winner ‘does what it says on the tin’. A glossary of frequent terms you’ll encounter along your CHC journey, jam-packed with dozens of links to popular articles all – in one place.

THE ABC OF CHC

July

This was another close contest! Our article, How To Recover Care Fees After A Successful Retrospective Review proved to be highly relevant and useful for those pursuing a retrospective claim for NHS Continuing Healthcare Funding and a helpful guide to ensure that you have all the necessary proof of payment to obtain reimbursement in the event of a successful claim. However, our vote went to the ever popular…

Read This Before You Needlessly Sell Your Home To Pay For Care!

August

Know your rights! Due to the spiraling number of enquiries we received from families about their relatives being discharged from hospital into care, this key blog looks at the availability government funding to help speed up patient discharge during the COVID pandemic…

Why aren’t you getting free NHS care?

September

This month’s choice was just one blog out of many we could have chosen as part of our ongoing series which looks at the different levels of need in each Care Domain to determine eligibility for NHS Continuing Healthcare Funding at a full Multi-Disciplinary Team (MDT) assessment.

Get Help Breaking Down the Decision Support Tool: Mobility, Part 1

October

MDTs can be a very stressful time for families as this is the first proper bite at getting NHS Continuing Healthcare Funding. The stakes are high, and you really have to be fully prepared if you are to have any chance of success at this initial stage. For practical help, read our choice…

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

November

Congratulations to Channel 4 for tackling CHC and highlighting its complexities and challenges facing both the NHS appointed assessors and those being assessed [Channel 4 News Spotlights The Complexities And Frustrations Of Claiming NHS CHC Funding]. However, despite Channel 4’s prominence, we went with some more practical hands-on advice and what you can do to improve your chances of being awarded CHC…

Do Care Homes Play A Part In Preventing Successful Outcomes For CHC Funding?

December

It is not often that we get to speak to a former government Minister or indeed any Minister about CHC! However, we were delighted that Ivan Lewis agreed to share some thoughts on the evolution of the National Framework – the NHS rule book and guidance for CHC.

An Exclusive Interview With Ivan Lewis, The Minister Behind The National Framework.

Wishing you all a happy, healthy and prosperous new year with much success and continued strength when battling for your (relative’s) rights for CHC funding.

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An Exclusive Interview With Ivan Lewis, The Minister Behind The National Framework

Read below our exclusive interview with Ivan Lewis, former Labour MP for Bury South (1997 to 2019) and the architect behind the National Framework for NHS Continuing Care.

For 14 consecutive years, from 2001 and 2015, Mr Lewis served as a Labour Minister and Shadow Minister in various positions including, amongst many other prestigious roles, Education and Health.

He was appointed Care Services Minister and served in this role between May 2006 and October 2008 under Prime Ministers, Tony Blair and Gordon Brown – a critical era which heralded the National Framework for NHS Continuing Care.

What is NHS Continuing Healthcare?

Ivan: It is described as a package of care arranged and funded solely by the NHS to meet physical and/or mental health needs that have arisen because of disability, accident or illness. Eligibility decisions for NHS Continuing Healthcare (CHC) depend on whether someone’s need for care is primarily due to health needs.

If they meet the eligibility criteria, then responsibility for paying for their care and accommodation rests with the NHS and is paid via a local clinical commissioning group (CCG) and is not subject to means-testing.

Otherwise, care may be funded by the local authority, through Adult Services, which is means–tested, failing which, the individual will have to meet the cost of care from their own private means.

The outcome of any decision as to which organisation (NHS or local authority) will fund care can have significant financial consequences for the individual being assessed.

Getting free-funded NHS care means that they do not have to contribute, while local authority funding may require a contribution towards the cost of care.

In default, private self-paying individuals may be expected to pay many hundreds of pounds, if not thousands a week for their own care.

How were funding decisions made?

Ivan: In 1995, formal guidance, NHS responsibilities for meeting continuing healthcare needs, was issued to both the NHS and local authorities, which left policy-making and drafting written criteria for NHS funded care to local health authorities.

So, decisions about care funding were placed with individual local health authorities around the country, using their own unique assessment criteria. That led to a wide disparity of decisions and inconsistency as to who may or may not get NHS Continuing Care funding – largely dependent on how their Strategic Health Authority undertook their own assessment process.

As each had their own criteria for eligibility, this created nationwide inconsistency in decision-making and outcomes – and what came to be known as the ‘postcode lottery’. Some local health authorities were more generous and were more inclined to award NHS funding whilst others were more restrictive and stringent in applying their criteria.

What was the assessment process like at the time?

Ivan: Given the above unilateral approach adopted by individual health authorities, it was chaotic, inconsistent, and perhaps overall unfair to those applying for NHS funding. Someone living in one Strategic Health Authority may be resolutely denied access to NHS funding, whereas a patient living down the road or another part of the country, falling under the auspices of another health authority but having very similar needs, might well be granted full funding for their care needs.

What do you think was the turning point?

Ivan: The Court of Appeal judgment in the Pamela Coughlan case in 1999 was clearly a pivotal point in the domain of NHS funding. This case replaced the 1995 guidance and contains core principles since adopted and incorporated into the Care Act 2014 and the National Framework, and are still relevant even today.

The case considered whether local authorities could lawfully provide nursing care for a chronically ill patient (Pamela Coughlan), or whether, by law, nursing care had to be provided 100% free as part of the NHS. The court found that, where an individual’s needs are greater than those which the local authority could be expected to provide i.e. the primary need is a health need, responsibility for providing care falls to the NHS, irrespective of the setting where the care takes place. Thus, the case established a dividing line between care that could lawfully be provided by the local authority and care that had to be provided by the NHS.

What happened next?

Ivan: There was some further guidance issued in 2001 to take into account the Coughlan judgment, but it proved too restrictive and still left too much room for local variation. More was needed to be done to give greater clarity as to situations when NHS funding had to be awarded.

What about Grogan?

Ivan: Coughlan was followed by the Grogan case in 2006. Mrs Grogan was repeatedly deemed ineligible on at least three prior occasions for funded care by the NHS, despite presenting with persistent chronic health needs at each assessment. She argued, as per Coughlan, that her needs were primary healthcare needs. The court found, amongst other things, that the NHS did not have – and did not apply – suitable criteria that identified the test or approach to be followed in deciding whether Maureen Grogan’s primary need was a health need; that their decision-making was fatally flawed; and the Primary Care Trust should have followed the Coughlan primary health needs test. The court found in Mrs Grogan’s favour and set aside the NHS’s decision that she did not qualify for NHS Continuing Healthcare and recommended that it reconsider her entitlement to NHS funding, in compliance with the Coughlan case.

Both Coughlan and Grogan are referred to in the NHS National Framework. Primary Care Trusts (now called Clinical Commissioning Groups) were mandated to review previous decisions rejecting or removing NHS funding to ensure that they were Coughlan compliant.

Why was the National Framework introduced?

Ivan: It wasn’t until 2004 that the Government decided it was time for a nationally consistent and coordinated approach to assessing and arranging Continuing Care. So, in an effort to standardise the assessment process for NHS funding and to clearly establish which side of the dividing line an individual’s care needs funding fell into, the Department of Health issued the National Framework for NHS Continuing Healthcare in 2007.

The aim was to create a comprehensive, single, streamlined set of national rules and guidance, in order to make decision-making and resolution of disputes more consistent and transparent. No longer would individual Strategic Health Authorities have their own rules to determine eligibility, but they would now be governed by a national tool for decision-making. These national criteria on care eligibility would have greater clarity and could be interpreted consistently. That meant that individuals with similar health needs should have confidence in a robust assessment (and appeal) process and consistent outcomes, regardless of where they lived, their diagnosis or personal circumstances.

The National Framework has since been updated in 2009, 2012 and more recently in 2018. With each revision, the National Framework has become more proscriptive, with better guidance to help both NHS practitioners and the public understand this complex assessment process.

In retrospect, are you pleased with the way things went?

Ivan: No doubt the concept of a National Framework was a significantly big improvement on how NHS assessments should be carried out. It streamlined the whole process, whilst educating those appointed by the NHS to represent them in the assessment process, and at the same time, gave guidance to the ‘mystical’ art of assessments and appeals. The intended outcome was to promote confidence and consistency, and fewer challenges to outcome decisions rejecting funding.

I was quoted in the Department of Health Press Notice, streamlining the system for NHS continuing care, at the time, as saying:

“Thousands of people in England are likely to receive more help towards their care costs.

The new National Framework for NHS Continuing Healthcare, published today, has been developed in close consultation with voluntary groups, professional bodies and patient/user groups and will make funding decisions on who is eligible for NHS continuing care fairer, faster and easier to understand.

It will create consistent access to fully funded care with clear national policies for deciding eligibility. It also abolishes different nursing bands for free nursing care – freeing up more time for nurses and cutting down on repeated patient assessments. The Framework will be put into action by the NHS and Local Authorities from October this year, and is expected to cost up to £220 million in the first year of operation….

We understand that families do have to make difficult and emotional decisions when someone has to go into residential care and this can be made worse by having to consider how this will be funded.

At present, people with identical care needs can receive different decisions on whether they are eligible for fully funded continuing care, based purely on where they live.

The new system will address these anomalies and will introduce one national system for everyone needing this type of care in England.”

How does the Government’s new social care cap of £86,000 impact on CHC?

Ivan: The cap has no direct relevance to NHS Continuing Healthcare funding as it relates to the provision of social care, which is means-tested. CHC, however, is provided by the NHS and is not means-tested. Quite simply, if you meet the eligibility criteria for CHC, the cost of your care and accommodation should be met in full by the NHS – free of charge – without having to contribute a penny! So before you are ever considered for social care, you should be assessed for CHC first.

CTBD comment: Thank you, Ivan Lewis, for sharing your thoughts with us.

We now have a more comprehensive rulebook setting out the CHC process, start to finish, but unfortunately, the job is far from complete. There is still work to be done to make improvements to ensure fairer and faster outcomes with more accessibility for families trying to get to grips with this unduly complex funding process.

The National Framework still remains open to subjective interpretation of the national guidance, and that in turn creates anomalies and inconsistencies nationwide. Sadly, the postcode lottery remains very much alive today as it did some 22 years ago when Coughlan was being debated.

For further reading around the subject, read these helpful blogs:

How To Avoid Selling Your Home To Pay For 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

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

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

For more free resources and information about every aspect of CHC, visit Care To Be Different.

If you need help assessing your relative’s level of need in any domain on the DST, or advocacy representation at an MDT or appeal, don’t hesitate to contact us or get help from one of our specialist Advice Lines to discuss your case today.

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.

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Get Help Breaking Down the Decision Support Tool: Communication

senior woman eating her lunch at home

This series takes a detailed look at the domains of the Decision Support Tool. This week we examine the descriptors in the Communication domain, to help you assess your or your relative’s “level of need” in this important domain.

Don’t miss parts one to ten of this series!

Get Help Breaking Down The Decision Support Tool: An Overview

Get Help Breaking Down the Decision Support Tool: Breathing Part 1

Get Help Breaking Down the Decision Support Tool: Breathing Part 2

Get Help Breaking Down the Decision Support Tool: Nutrition Part 1

Get Help Breaking Down the Decision Support Tool: Nutrition Part 2

Get Help Breaking Down the Decision Support Tool: Continence

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 1

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 2

Get Help Breaking Down the Decision Support Tool: Mobility, Part 1

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

Following the 2018 revisions of the DST, Communication moved from domain number four to domain number six. It now follows Mobility and precedes Psychological & Emotional Needs. The assessed levels of need in the Communication domain range from ‘No Needs’ to ‘High’ needs. There is no descriptor for ‘Severe’ or ‘Priority’ needs in this domain, indicating that an inability to communicate is unlikely to present an immediate risk to life, or amount to a primary health need in and of itself. Needs in the Communication domain are important because of their impact on the delivery of care and on other domains of the DST, particularly pain. This interrelation should always be carefully considered in the analysis of the four Key Characteristics.

In our experience, Communication is one of the most hotly contested domains in the DST, largely because the descriptors for ‘Moderate’ and ‘High’ need are so similar:

‘Moderate’ Needs – Communication about needs is difficult to understand or interpret or the individual is sometimes unable to reliably communicate, even when assisted. Carers or care workers may be able to anticipate needs through non-verbal signs due to familiarity with the individual.

‘High’ Needs – Unable to reliably communicate their needs at any time and in any way, even when all practicable steps to assist them have been taken. The individual has to have most of their needs anticipated because of their inability to communicate them.

Discerning between the ‘Moderate’ and ‘High’ needs descriptors is made even more difficult in a residential care setting, where the person’s needs will often be anticipated and met via routine care planning, regardless of their communicative ability.

The following clinical factors are relevant to the assessment of needs in this domain:

  • Can the person communicate their needs or wishes verbally?
  • Is English their first language?
  • Is their speech clear? Do they use words in context?
  • Can the person communicate their needs non-verbally?
  • Is this difficult to interpret?
  • Do they use sign language?
  • Is the person’s communication reliable?
  • Is the person under the care of a Speech & Language Therapist?
  • Does the person use any communication aids (picture cards, Eye-Blink etc.)?
  • Does the person have any degree of cognitive impairment?
  • Are they diagnosed with aphasia and/or dysphasia?
  • Do they require assistance to make their needs known?
  • Can they understand and follow instructions?
  • Can they call for help, either verbally or using the Call Bell?
  • Does the person suffer pain?
  • Are they able to communicate pain symptoms, either verbally or non-verbally?

The DST provides the following advice to those assessing needs in the Communication domain:

This section relates to difficulties with expression and understanding, in particular with regard to communicating needs. An individual’s ability or otherwise to communicate their needs may well have an impact both on the overall assessment and on the provision of care. Consideration should always be given to whether the individual requires assistance with communication, for example through an interpreter, use of pictures, sign language, use of Braille, hearing aids, or other communication technology.

REMEMBER – an inability to communicate verbally, or even to speak at all, does not necessarily equate to ‘High’ needs in this domain. Where CHC assessment is concerned, Communication is all about the ability to make needs known, regardless of how this is achieved.

Now that we’ve outlined the type of things the MDT will be considering in this domain, let’s take a look at the descriptors for the respective levels of need. For each level of need, we provide a case study to give you a better understanding of how the descriptors might be applied at your or your relative’s assessment.

NO NEEDS

Able to communicate clearly, verbally or non-verbally. Has a good understanding of their primary language. May require translation if English is not their first language.
Key Factors

No communication deficits.

Is able to make needs known clearly, either verbally or non-verbally.

Communication is reliable.

CASE STUDY – NO NEEDS

Mrs. X. can communicate her needs to staff clearly and effectively. She does not experience any slurred speech or word-finding difficulties. She wears hearing aids and can struggle to hear if the environment is noisy; however, this does not impact her ability to let staff know when she wants or needs something. Mrs. X will ask staff for meals, drinks and assistance spontaneously; she does not require any anticipation although most of her needs are met routinely due to the setting of care. Mrs. X is able to use the Nurse Call system.

Mrs. X presents with ‘No needs’ as she is able to communicate clearly, verbally or non-verbally.

LOW

Needs assistance to communicate their needs. Special effort may be needed to ensure accurate interpretation of needs or additional support may be needed either visually, through touch or with hearing.
Key Factors

Able to communicate verbally or non-verbally

Needs assistance to ensure effective communication

CASE STUDY – LOW

Mr. X gets confused and sometimes mixes up his words. He is unable to join in a conversation and he needs assistance to help him understand what is being said to him. However, he is able to express his needs clearly, often by using one or two words; e.g., he will tell staff when he wants to go to the toilet, go to bed, get up in the morning, walk around, and when he is hungry or thirsty. Mr. X wears glasses and his hearing is good.

Mr. X presents with a ‘Low’ level of need as he needs assistance to communicate his needs. Special effort may be needed to ensure accurate interpretation of needs or additional support may be needed either visually, through touch or with hearing.

MODERATE

Communication about needs is difficult to understand or interpret or the individual is sometimes unable to reliably communicate, even when assisted. Carers or care workers may be able to anticipate needs through non-verbal signs due to familiarity with the individual.
Key Factors

Able to communicate verbally or non-verbally

Communication is sometimes difficult to understand, and/or unreliable

Even with assistance, the person is sometimes unable to communicate their needs

Non-verbal cues are used to anticipate needs

CASE STUDY – MODERATE

Mr. X has dysarthria and, although he can communicate verbally, his speech is not always clear or coherent. Mr. X does not recognise that he speaks quickly or that others can’t understand him, and this can frustrate him at times. Often, Mr. X is encouraged to repeat what he has said slowly so staff can understand and with some time and patience they are usually able to do so.

Care Plan confirms he uses pictures to indicate basic needs, such as hunger, thirst, too cold/hot. Reponses to closed questions are usually reliable. Mr. X has been assessed by the Speech and Language Therapist who has recommended the use of picture cards and advised staff regarding effective communication strategies. Mr. X has now been discharged by Speech and Language.

Care records indicate that staff can usually interpret needs by monitoring body language, at times when verbal communication is unclear.

Hearing appears intact and he wears glasses.

Mr. X presents with a ‘Moderate’ level of need as his communication about needs is difficult to understand or interpret or the individual is sometimes unable to reliably communicate, even when assisted. Carers or care workers may be able to anticipate needs through non-verbal signs due to familiarity with the individual.

 

HIGH

Unable to reliably communicate their needs at any time and in any way, even when all practicable steps to assist them have been taken. The individual has to have most of their needs anticipated because of their inability to communicate them.
Key Factors

Unable to communicate verbally or non-verbally

Any communication is unreliable and/or incomprehensible

Even with maximum assistance, cannot make needs known

Most or all needs are anticipated by staff due to inability to communicate

Non-verbal cues are unreliable

CASE STUDY – HIGH

Mrs. X is severely cognitively impaired and completely non-verbal. She is unable to indicate any of her needs at any time. She is unable to indicate pain, although she has no previous history of pain.

Care Plan

Unable to reliably communicate her needs at any time/in any way.

Staff anticipate all her needs for her.

MDT comments:

Mrs. X is severely cognitively impaired and is unable to reliably communicate her needs in any way at any time. Staff are required to anticipate her needs at all times and to provide regular checks and interventions in order to ascertain and meet needs promptly.

Mrs. X presents with a ‘High’ level of need as she is unable to reliably communicate their needs at any time and in any way, even when all practicable steps to assist her have been taken. The individual has to have most of their needs anticipated because of their inability to communicate them.

We hope this has helped you to understand the descriptors in the Communication domain.  Don’t miss the next part of this series, Psychological & Emotional Needs, coming very soon!

If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to contact one of our specialist Advice Lines to discuss your case today.

If you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 support page.

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.

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

Preparing for an MDT. We have received many comments on our Facebook page recently following a post by a contributor who said that her mum is soon to be assessed for NHS Continuing Healthcare funding (known colloquially as CHC). She goes on to describe her mother’s admission to hospital for surgery and her other conditions, namely Parkinson’s and osteoporosis, dementia and confusion. She is optimistic that her mother will receive CHC as a result of the forthcoming assessment.

Our contributor says that she has widely read up on CHC and believes that her mother will be found eligible for CHC funding, but is not unrealistic to the challenges of the process where she says, “anything can happen”. She goes on to ask whether it is preferable for her to be present or not at the CHC assessment, when it is being carried out.

Thank you to our contributor and all those who posted a reply on our Facebook page, in response. These comments raise some useful points.

Understanding the assessments

Firstly, there are 2 assessments. The first is the Checklist assessment – a screening tool to see if the applicant will pass on to the second stage – the full assessment – which is carried out by the NHS Clinical Commissioning Group’s (CCG) Multi-Disciplinary Team panel (MDT).

Understanding the Checklist Assessment

Can the NHS refuse to carry out an initial Checklist?

The MDT is comprised of at least 2 professionals from different healthcare professions (usually including one healthcare and one social care professional) who are knowledgeable about the individual’s health and social care needs, and where possible, have been recently involved in their assessment, treatment or care, and who must be trained in the National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care so that they have the relevant skills and knowledge to carry out the assessment. The National Framework sets out the rules and guidance to be followed at assessments.

The appointed MDT representatives must be trained and be fully conversant and cognisant of the workings of the National Framework (all 167 pages) in order to fulfil their obligations and conduct fair and robust assessments of a patient’s eligibility for CHC. Sadly, contrary to the requirements of the National Framework, we hear that many appointed representatives haven’t had sufficient training in the National Framework or don’t fully understand it. Poor assessments will inevitably lead to poor outcomes for families and CCGs rejecting some perfectly proper applications for CHC funding.

As some of our readers have already commented in response to this Facebook post, and in answer to the contributor’s question – it is VITAL that you attend both the Checklist assessment and the MDT. Otherwise you have no way of knowing what was said or how the meeting was conducted, who represented the CCG or what their professional qualifications or what prior involvement they have had in your relative’s care. There will be no way of knowing if your relatives healthcare needs were accurately and robustly assessed?

You simply have to be there! If you can’t make the date, see if you can adjourn the assessment to a more convenient time.

Take someone with you for support

Take someone with you to the meeting to take notes. It can be emotional and emotive, especially as you will be discussing your loved one’s complex and challenging care needs.

There is too much to absorb if going alone. You might miss out on important points you want to make. Another pair of eyes and ears is always useful if you can have someone responsible to assist you.

You know your relative’s needs and can therefore correct any misunderstandings or misinformation the CCG’s assessors might have got in this short window of assessment. If you’re not at the MDT, you cannot contribute as easily.

Don’t forget, you are also entitled to have a professional advocate to represent you at the MDT.

Read our blog: Can The MDT Panel Refuse To Proceed If I Have An Advocate?

The CCG should give you reasonable advance notice of the MDT assessment so that you (and any appointed representative) can attend. If they do not then you could have grounds for an appeal. The point is you really need attend the MDT.

But just being there is not good enough. You have to have an in-depth knowledge of the National Framework and its guidance to understand how the assessment process works, what the MDT are looking for when assessing eligibility and how to spot mistakes. Turning up to an MDT without proper advance preparation is not necessarily going to make a difference.

Take time to research the subject well

Luckily, our Care To Be Different website has a wealth of free information to help you at every stage of the process. You can also buy our helpful book “How To Get The NHS To Pay For Care” available as a paperback or PDF download. Otherwise, call one of our Specialist Advice Helplines and speak to an experienced CHC nurse or Case Manager.

We know that battling the CCG for CHC funding is never a foregone conclusion.

Like so many other families, you may assume that you relative will automatically qualify due to their needs being so great. This may be correct – but sadly, most families are in for a big shock.

You may think you know the National Framework well and that you will be able go at it alone and see off the MDT assessors but make no mistake, the bar to obtaining CHC is set very high.

This is a big challenge

The CCG won’t just roll over and award funding. They will fight for every penny to protect budgets, however obvious your relative’s qualification for CHC may appear.

Collate as much evidence as you can and prepare yourself for a battle. This is far more time-consuming and complex than it sounds. Then there is the challenge of how to best present your information in a coherent manner. This is to make your best points. Irrelevancies can side-track you and may undermine your relative’s application for CHC as this stressful and emotional time. At an assessment you are arguing for your relative’s funding and the stakes are high. Respondents in the midst of their application for CHC have said, “the paperwork is mind blowing…”, “dunno where to start, I’m not ready for this meeting, by a long shot”, “…I am fuming, so how does one stay calm?”, “… a long, long journey ahead, I’m afraid”, “It’s gruesome…”

Yes, you have to make the most of the MDT and absolutely give it your best shot.

The CCG assessors, of course, have a huge advantage; both trained and practised in using the National Framework and the assessment tools.

The National Framework is largely designed to assist NHS assessors, rather than members of the public with a relative in need of care. Unfortunately, not all CHC assessors understand the assessment process themselves or apply it correctly. That is why you (and your advocate) need to attend, if you are going to be of any help to your relative.

“It’s a full time job – to have any chance of getting full funding – you need to prepare, prepare and prepare – you must know the guidance, regulations and law inside out and stand your ground..”

Research as much as you can

Don’t be afraid to seek help as this can save you a lot of time and frustration. You will find the appeal process slow and stressful not to mention the impact this will have on hard-earned savings paying for care.

It can even mean having to sell your relative’s home whilst the appeal process trudges forward slowly to a final conclusion. This can go on for several years and cause many sleepless nights.

You may not succeed at the MDT but you can certainly help your chances by preparing well for it.

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

If you need assistance or guidance, the common mistake is to leave it until the last minute to seek help. You are entitled to ask a professional advocate to represent you. Most do get far better outcomes. They’re now arguing from strength on a level playing field and the CCG assessors will be more wary to carry out more robust and fair assessments.

No advocate, however skilled, can argue for healthcare needs where they simply don’t exist. Give them as much evidence as you can, in advance. They will then be able to advise you on your chances of success.

Preparing for an MDT properly takes time, and realistically, you can’t expect an expert to pull out the stops and absorb all the information for a robust assessment if you contact them at short notice on the day of your MDT! Early preparation is essential.

Summary:

  1. We strongly recommend that you attend any assessment.
  2. It’s a good idea to take someone with you.
  3. Turning up is insufficient on its own, instead do your research beforehand.
  4. Read as much as you can.
  5. Don’t be afraid to ask for help, where necessary.
  6. Don’t have the wool pulled over your eyes. Get professional advocacy support to maximise your chances of success.
  7. Failure to get it right could see your relative’s savings and assets eroded to pay for care fees.

Here’s a selection of further blogs to help you read around the subject when preparing for your MDT:

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

What Is The Role Of The MDT Coordinator?

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

Post a reply below with your experiences of MDTs to help others going through the same thing…

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

Care worker serving dinner for elderly woman

This series takes a detailed look at the domains of the Decision Support Tool. This week we examine the second two descriptors in the Mobility domain, to help you assess your or your relative’s “level of need” in this important domain.

Don’t miss parts one, two, three, four, five, six, seven, eight and nine of this series!

Get Help Breaking Down The Decision Support Tool: An Overview

Get Help Breaking Down the Decision Support Tool: Breathing Part 1

Get Help Breaking Down the Decision Support Tool: Breathing Part 2

Get Help Breaking Down the Decision Support Tool: Nutrition Part 1

Get Help Breaking Down the Decision Support Tool: Nutrition Part 2

Get Help Breaking Down the Decision Support Tool: Continence

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 1

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 2

Get Help Breaking Down the Decision Support Tool: Mobility, Part 1

The assessed levels of need in the Mobility domain range from ‘No Needs’ to ‘Severe’. The vast majority of people we assist will fall into the ‘Moderate’ or ‘High’ needs categories, owing to an inability to mobilise independently and/or a risk of falls. The main differentials are the ability to weight bear and the frequency of falls. It is relatively unusual to see a ‘Severe’ need in this domain and these tend to be individuals with a high spinal injury, brain injury or other significant clinical presentation.

The following clinical factors are relevant to the assessment of ‘High’ and ‘Severe’ needs in this domain:

  • Is there a history of falls?
  • Have there been any recent falls?
  • Were any injuries sustained?
  • What is the person’s score on the Falls Risk Assessment?
  • Can the person bear their own weight?
  • If not, do they need a hoist to transfer?
  • If so, is this a standing hoist (Stand-Aid) or full hoist (sling)?
  • Can the person alter their own position in bed or chair?
  • How many members of staff are required to assist with moving & handling?
  • Is the person able to assist with moving & handling procedures?
  • Does the person cooperate with moving & handling procedures?
  • Does the person experience pain on movement?
  • Does the person suffer contractures, spasms or tremors?
  • Does the person require specialist positioning?
  • Is positioning critical (i.e., life threatening if carried out incorrectly)?
  • Is there a risk of serious harm on movement and/or transfer?

The DST provides the following advice to those assessing needs in the Mobility domain:

This section considers individuals with impaired mobility. Please take other mobility issues such as wandering into account in the behaviour domain where relevant. Where mobility problems are indicated, an up-to-date Moving and Handling and Falls Risk Assessment should exist or have been undertaken and the impact and likelihood of any risk factors considered. It is important to note that the use of the word ‘high’ in any particular falls risk assessment tool does not necessarily equate to a high level need in this domain.

This underlines the crucial importance of verifiable, written evidence to support the assessment of needs in this domain. For example, in the case of a person who is at risk of falling, the MDT will expect to see a recent Falls Risk Assessment confirming the level of risk and steps taken to mitigate this; in the case of a person who is immobile and unable to weight bear, the MDT will expect to see a Moving & Handling assessment confirming this. A lack of appropriate documentation may result in a lower level of need being applied, regardless of the verbal testimony of family and/or staff.

Now that we’ve outlined the type of things the MDT will be considering in this domain, let’s take a look at the descriptors for ‘High’ and ‘Severe’ needs. For each level of need, we provide a case study to give you a better understanding of how the descriptors of need might be applied at your or your relative’s assessment.

HIGH

Completely unable to weight bear and is unable to assist or cooperate with transfers and/or repositioning.

OR

Due to risk of physical harm or loss of muscle tone or pain on movement needs careful positioning and is unable to cooperate.

OR

At a high risk of falls (as evidenced in a falls history and risk assessment).

OR

Involuntary spasms or contractures placing the individual or others at risk.

Key Factors

Unable to weight bear, requires a full hoist to transfer.

Unable to alter own position in bed and/or chair, requires full assistance.

Is non-compliant with moving & handling interventions and/or unable to follow instruction.

Has a significant falls history and remains at risk of further falls.

Spasms, contractures, tremors.

CASE STUDY 1 – ‘HIGH’ NEEDS

Mrs. X is completely immobile and is dependent on two members of staff to assist her with all manual handling. Staff report that they used a standing hoist until recently, but that Mrs. X is increasingly uncooperative with intervention and is therefore now unsafe using the standing hoist. Staff use a full body sling and hoist for all transfers. A wheeled commode is utilised for showering; however, this is also under review by care provider management due the recent increase in challenging behaviour.

Mrs. X is unable to assist or cooperate with transfers due to a severe cognitive impairment. Staff report that Mrs. X becomes aggressive on intervention which poses a risk to self and others. Staff utilise a slide sheet to move her in bed, and a bespoke wheelchair to move between rooms and on outings.

Mrs. X has not sustained any falls, is not noted to suffer with contractures or spasms and there is no evidence of a requirement for careful positioning.

Mrs. X presents with ‘High’ needs as she is completely unable to weight bear and is unable to assist or cooperate with transfers and/or repositioning.

CASE STUDY 2 – ‘HIGH’ NEEDS

Mr. X’s mobility is variable and has remained as such since his admission to the nursing home.

While he was in hospital, Mr. X was able to mobilise at times with the assistance of 1 member of staff but did suffer a number of falls when he attempted to move unaided.

On admission to the nursing home, he was assessed as being at high risk of falls. He has subsequently suffered numerous falls despite staff’s best efforts to minimise the risk. A sensor mat was placed in his room to alert staff when he was moving. Mr. X is prompted and encouraged to call for staff assistance when he wants to move around, but he can be forgetful owing to a cognitive impairment. He requires prompts from staff when getting in and out of bed, and also to get up from his chair safely.

Mr. X continues to be assessed as being at high risk of falls and continues to sustain occasional falls. He requires staff to monitor his whereabouts and assist him when he is tired.

Mr. X presents with ‘High’ needs as he is at a high risk of falls (as evidenced in a falls history and risk assessment).

CASE STUDY 3 – ‘HIGH’ NEEDS

Mr. X has significant deficits with his mobility and, although he can transfer independently from his bed to wheelchair and wheelchair to toilet, he is extremely unsteady and at high risk of falls.

Mr. X has been assessed by the physio and he now has a Rea Azalea self-propelling wheelchair to use as an interim until his own bespoke chair can be ordered. This has given him increased lateral support and stopped him leaning to the right. Care Plans indicate he can transfer safely and can apply the brakes himself.

Mr. X demonstrated how he moved the foot plates of the wheelchair in order to stand, and he used his feet. He also indicated he had little sensation in his feet and graze marks were evident on his right foot. He was unable to apply the wheelchair brake even with assistance due to chorea-like movements and involuntary tremor.

Falls risk Assessment = high risk due to Mr. X being increasingly unsteady, with tremor and ataxia.

Care Plan indicates that Mr. X refuses to use the hoist but can stand and transfer. Mr. X moves independently in bed. He has difficultly self-propelling his wheelchair and so staff assist him. He is waiting for an assessment on whether he can use an electric chair.

Last documented fall- 08/07/2021- sat on floor between bed and wheelchair.

Mr. X presents with ‘High’ needs as he has involuntary spasms or contractures placing the individual or others at risk, AND he is at a high risk of falls (as evidenced in a falls history and risk assessment).

SEVERE

Completely immobile and/or clinical condition such that, in either case, on movement or transfer there is a high risk of serious physical harm and where the positioning is critical.

Key Factors

Completely immobile.

Risk of serious injury on movement.

Risk to life should incorrect positioning occur.

CASE STUDY – ‘SEVERE’ NEEDS

Owing to an acquired brain injury (ABI), Mr. X is unable to move the left side of his body; there are some minimal movements to right lower limb and he will try to move his feet at times. His left arm is severely contracted in flexion, as is his hand. His right arm and hand can be moved freely, and Mr. X will move them at times, but not for any functional purpose.

Whilst lying in bed in a neutral position on his back, Mr. X’s upper body is contorted to the right, as is his head. His head and neck are extended to the right and staff are unable to reposition to the central line. Mr. X experiences excess secretions which place him at risk of suffocation if he is not carefully positioned; he is unable to call for help.

Mr. X is nursed in bed at all times and can only be showered using a specialist platform as he is very rigid and unable to bend his body. Care Plans confirm that three-to-four carers are required to assist with showering due to the rigidity of Mr. X’s body. This procedure is only carried out once a week. Three members of staff are required for personal care and repositioning: one to carry out care, one to support Mr. X’s body and another to support his head.

Mr. X has been resident at the nursing home for over a decade and his needs have not changed substantially during this time, although his contractures have worsened due to immobility. Care and nursing staff must take particular care when repositioning due to contractures, rigidity and pain. Staff are now very familiar with Mr. X’s mobility needs and know how to reposition and transfer him safely.

Mr. X suffered an unexplained fractured neck of femur in 2008, treated conservatively. Although Mr. X has no formal diagnosis of brittle bones, it is likely he has developed osteoporosis. Femurs do not routinely fracture without a force of some kind being applied. Extra care is required to avoid further injury.

Mr. X presents with ‘Severe’ needs as he is completely immobile and/or clinical condition such that, in either case, on movement or transfer there is a high risk of serious physical harm and where the positioning is critical.

We hope this has helped you to understand the second two descriptors in the Mobility domain. Don’t miss the next part of this series, Communication, coming very soon!

If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to contact one of our specialist Advice Lines to discuss your case today.

If you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 support page.

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.

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Get Help Breaking Down the Decision Support Tool: Mobility, Part 1

Mobility

This series takes a detailed look at the domains of the Decision Support Tool. This week we examine the first three descriptors in the Mobility domain, to help you assess your or your relative’s “level of need” in this important domain.

Don’t miss parts one, two, three, four, five, six, seven and eight of this series!

Get Help Breaking Down The Decision Support Tool: An Overview

Get Help Breaking Down the Decision Support Tool: Breathing Part 1

Get Help Breaking Down the Decision Support Tool: Breathing Part 2

Get Help Breaking Down the Decision Support Tool: Nutrition Part 1

Get Help Breaking Down the Decision Support Tool: Nutrition Part 2

Get Help Breaking Down the Decision Support Tool: Continence

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 1

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 2

Following the 2018 revisions of the DST, Mobility kept its original position at domain number five. However, it now follows Skin and precedes Communication. As we discussed in our previous blog on the domains of the DST, the new proximity of the Skin and Mobility domains emphasises the common interaction between them. Any interrelation between domains (complexity), and its potential impact on the delivery of care (intensity/unpredictability), should be considered in the analysis of the four Key Characteristics.

The assessed levels of need in the Mobility domain range from ‘No Needs’ to ‘Severe’. There is no descriptor for a ‘Priority’ level of need in this domain, indicating that an issue with mobility is unlikely to present an immediate risk to life. That being said, a ‘Severe’ level of need in this domain is likely to result in significant intensity and complexity, in and of itself. In our experience, very few individuals meet the stringent criteria for a ‘Severe’ level of need in this domain, which far exceed an inability to weight bear or mobilise independently.

The following clinical factors are relevant to the assessment of ‘No’, ‘Low’ and ‘Moderate’ needs in this domain:

  • Can the person move around independently?
  • Do they use any mobility aids? (Walking stick, Zimmer frame etc.)
  • Is there any history of falls?
  • Have there been any recent falls?
  • Were any injuries sustained?
  • What is the person’s score on the Falls Risk Assessment?
  • Can the person bear their own weight?
  • If not, do they need a hoist to transfer?
  • If so, is this a standing hoist (Stand-Aid) or full hoist (sling)?
  • Can the person alter their own position in bed or chair?
  • How many members of staff are required to assist with moving & handling?
  • Is the person able to assist with moving & handling procedures?
  • Does the person cooperate with moving & handling procedures?

The DST provides the following advice to those assessing needs in the Mobility domain:

This section considers individuals with impaired mobility. Please take other mobility issues such as wandering into account in the behaviour domain where relevant. Where mobility problems are indicated, an up-to-date Moving and Handling and Falls Risk Assessment should exist or have been undertaken and the impact and likelihood of any risk factors considered. It is important to note that the use of the word ‘high’ in any particular falls risk assessment tool does not necessarily equate to a high level need in this domain.

This underlines the crucial importance of verifiable, written evidence to support the assessment of needs in this domain. For example, in the case of a person who is at risk of falling, the MDT will expect to see a recent Falls Risk Assessment confirming the level of risk and steps taken to mitigate this; in the case of a person who is immobile and unable to weight bear, the MDT will expect to see a Moving & Handling assessment confirming this. A lack of appropriate documentation may result in a lower level of need being applied, regardless of the verbal testimony of family and/or staff.

Now that we’ve outlined the type of things the MDT will be considering in this domain, let’s take a look at the descriptors for ‘No’, ‘Low’ and ‘Moderate’ levels of need. For each level of need, we provide a case study to give you a better understanding of how the descriptors of need might be applied at your or your relative’s assessment.

NO NEEDS

Independently mobile
Key Factors

Moves around independently, without aids.

No identified risk of falling or recent falls history.

CASE STUDY – NO NEEDS

Mrs. X is independently mobile and walks around the care home freely. She is able to stand without assistance and does not require any walking aids. Mrs. X has not suffered any falls since her admission to the home six months ago. She does not require any moving or handling interventions by staff and is able to alter her own position in bed or chair, which she does at frequent intervals without prompts.

Mrs. X presents with ‘No Needs’ as she is independently mobile.

LOW

Able to weight bear but needs some assistance and/or requires mobility equipment for daily living.

 

Key Factors

Mobilises with some assistance.

May require the use of mobility aids (walking stick, Zimmer frame etc.).

No identified risk of falling or recent falls history.

CASE STUDY – LOW

Mr. X is independently mobile and walks with a Zimmer frame. He has not suffered any falls since his admission to the home and does not have a history of falls pre-admission. Mr. X can change his position in bed and chair and does so regularly without prompting. As his dementia progresses, Mr. X may need some gentle reminders from staff to use his Zimmer frame when he is moving around the home. To date, he has not attempted to mobilise without his Zimmer, but staff keep a close eye to ensure his safety.

Mr. X presents with a ‘Low’ level of need as he is able to weight bear but needs some assistance and/or requires mobility equipment for daily living.

MODERATE

Not able to consistently weight bear.

OR

Completely unable to weight bear but is able to assist or cooperate with transfers and/or repositioning.

OR

In one position (bed or chair) for the majority of time but is able to cooperate and assist carers or care workers.

OR

At moderate risk of falls (as evidenced in a falls history or risk assessment)

 

Key Factors

Ability to weight bear is inconsistent.

Cannot bear their weight, but can help carers to change position or transfer.

Chair- or bed-bound, but can help carers to change position or transfer.

At a “moderate” risk of falls and has suffered some recent falls.

CASE STUDY 1 – MODERATE

Mr. X is unable to weight bear and completely dependent on two members of staff for all transfers and movement in bed. He is able to co-operate with staff and follow instructions but is unable to stand for even short periods sufficient to transfer. A full hoist is required to assist him to transfer from bed to chair etc. Mr. X is diagnosed with osteoarthritis and osteoporosis and staff report that he can be stiff at times, especially in the morning. He is prescribed PRN Paracetamol for pain if required.

Mr. X does not have any contractures, but staff report that it can be difficult to manage his catheter at times as his hips are restricted due to stiffness which eases after a short time.

Mr. X has previously suffered with falls which have resulted in significant fractures. He continues to be assessed as being at a high risk of falling and, on one occasion shortly after admission, he was noted to have tried to sit on the side of his bed without assistance. Staff moved him to a quieter room as they noted that noisy areas increased his anxiety, since the change of room he has not attempted to get up. He suffers with periods of anxiety, but even when agitated he does not try to get out of bed or chair, and staff report that bed rails are not required when in bed as he does not move.

Mr. X presents with a ‘Moderate’ level of need as he is completely unable to weight bear but is able to assist or cooperate with transfers and/or repositioning.

NOTE – Mr. X’s Falls Risk Assessment indicates a high degree of risk. However, this does not equate to a high level of need in this domain as he has suffered only one fall since his admission and no longer attempts to stand and walk unaided.

CASE STUDY 2 – MODERATE

Mrs. X is able to mobilise with a Zimmer frame and the assistance of one carer. However, she is unsteady and has poor balance and will sometimes push herself back when mobilising and the staff have to catch her and allow her to lower herself to the floor.

Sometimes a wheelchair is used to transport Mrs. X when she is feeling tired or is particularly unsteady.

Mrs. X has suffered one fall since admission to the care home, which was not witnessed by the staff. No injuries were sustained.

Mrs. X has an alarm mat at the side of her bed and when the alarm goes off, she will sit on the side of the bed and wait for staff to attend to her. Mrs. X is able to use the nurse call system to alert staff if she needs their help.

Falls Risk Assessments indicate a moderate risk of falling.

Mrs. X presents with a ‘Moderate’ level of need as she is at moderate risk of falls (as evidenced in a falls history or risk assessment).

We hope this has helped you to understand the first three descriptors in the Mobility domain.  Don’t miss the next part of this series, Mobility part 2, coming very soon!

If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to contact us or speak to one of our specialist Advice Lines to discuss your case today.

If you want us to review your case or need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 support page.

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.

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Retrospective claims – 3 New Tricks To Watch Out For!

3 tricks to watch out for

We recognise that NHS Clinical Commissioning Groups (CCGs) have to make great savings in their annual budgets, but we have come across 3 scenarios recently that we just had to bring to your attention as CCGs seek more inventive ways to evade making proper restitution (reimbursement) to families for wrongly paid care fees who have have launched successful retrospective claims.

Watch out for the CCGs’ latest tricks to save costs

Vital Information About Paying For Care

Background:

“NHS Continuing Healthcare is a package of care arranged and funded solely by the health service in England for a person aged 18 or over to meet physical or mental health needs which have arisen as a result of disability, accident or illness. Where an individual has both health and social care needs, but they have been assessed as having a ‘primary health need’ under the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care3 (the National Framework), the NHS has responsibility for providing for all of that individual’s assessed health and social care needs. This care can be provided in a number of settings, including at home.”

If you think that your relative may a ‘primary health need’ and have been eligible for NHS Continuing Healthcare Funding (CHC) for a past period of care, start by writing to their local CCG’s NHS Continuing Healthcare Department to request a retrospective review.

If successful, your relative will be entitled to reimbursement of all their care fees paid during the period of eligibility under consideration – including the full cost of their care/nursing home accommodation – which could amount to many tens of thousands of pounds (plus interest) being reimbursed.

A retrospective review can take place irrespective of whether the patient is living or has passed away.

However, because CCGs don’t publicly advertise the fact, many families don’t even realise that they can ask them to do a retrospective review of their relative’s healthcare needs!

There is, however, a time limit as to how far back you can claim retrospectively. If you are starting a retrospective review claim now, currently you can only go reclaim care fees going back to 1st April 2012.

The retrospective review process is supposed to engage with individual, their family and/or appointed representatives. However, it has been said by families that they felt that the MDT:

  • approached the assessment with a pre-conceived outcome and had already made up their minds in advance i.e. that their relative was not eligible for retrospective reimbursement.
  • ignored their views or comments and failed to gather sufficient evidence to ensure a robust assessment.
  • failed to provide an accurate picture of their relative’s health and social care needs by relying too heavily on documented evidence from the care provider, even when this information was demonstrably false.
  • refused to consider any evidence or comments seeking to correct the assessors’ misunderstanding or address misinterpretation of the care records or their relative’s care needs.

Historically, family representatives were often invited to attend the retrospective MDT, to provide evidence to the Panel before a decision was made. However, in more recent times, due to inherent backlogs, compounded by the coronavirus pandemic (and thousands of retrospective cases being put on hold for months until 1st September 2020), retrospective reviews are now carried out ‘in-house’ by the CCG’s appointed nurse assessors or else delegated to third parties such as a Commissioning Support Unit (CSU).

This has largely become a paper exercise whereby the CCG will complete a Needs Portrayal Document and send it to the family or their representative in draft for comment and invite them to submit their Written Submissions document in response. Once the CCG have received a reply, their assessor will then complete a Decision Support Tool making a ‘recommendation’ as to whether or not CHC Funding should be granted retrospectively. The CCG should ordinarily follow that recommendation and will then write to the family with their decision letter and timescales for any appeal if you are dissatisfied with the outcome.

Below are 3 recent scenarios that you need to look out for:

Scenario 1 – Make sure you don’t get short-changed!

We came across a situation recently where the family had been successful with their parent’s retrospective review claim and the CCG had agreed to refund care fees for the full period in question except for the last few weeks at ‘end of life’ when the patient was admitted to hospital with an acute deterioration of symptoms. The CCG’s bizarre rationale for refusing to reimburse the last few weeks of care home fees whilst in hospital, was simply due to the fact that the patient wasn’t living in the care home, but in hospital.

This stance was utterly incomprehensible, very upsetting for the family and tantamount to penny pinching.

The CCG’s flawed arguments ignored the fact that the patient was still contracted to pay for her care at the care home even whilst in hospital.

The matter was challenged by the family’s appointed legal advisors and the CCG immediately apologised for their oversight and agreed to reimburse the family the full period during hospital admission until the date of death. However, without legal representation, it is possible that the family wouldn’t have spotted the CCG’s error or known how to mount a successful challenge.

Scenario 2 – Make sure you get paid!

Here’s another baffling scenario…

A family won their retrospective review claim after many years battling their CCG for reimbursement of their relative’s care fees. However, somewhat bizarrely, it is this particular CCG’s unique policy to repay the restitution directly to the care home and not the family! This unusual practice is contrary to every other CCG in the country that we have come across.

The family made the claim through their legal advisors, not the care home. So obviously, it is the family who are entitled to reimbursement and not the care home. That is logical sense – but not apparently to the CCG – despite it clearly being the family’s loss, not the care home’s. It seems a deliberate ploy to cause further frustration to the family by paying their restitution via a third party care home who had absolutely nothing to do with the matter. By doing so, the care home has now effectively received a (temporary) windfall and double payment: once from the family whose relative wrongly paid for their care in the first place, and now again, from the CCG! This money does not belong to the care home.

When challenged, the CCG’s answer was that they’ve always done it this way and paid the care home directly because: (a) it’s far more convenient from an administrative perspective (ie rather than paying the family whose claim it is!) and; (b) as the family paid the care home, it is the care home’s responsibility to reimburse them not the CCG. Really! We cannot get our head round this incomprehensible logic.

The CCG say that the care homes are told to expect payment and are expected to pay it over to the family immediately once received. Sure! But on this occasion, somewhat unsurprisingly, the family weren’t initially told by the CCG that monies had already been paid to the care home. So, in effect this means that a care home could sit on a family’s restitution monies for a number of weeks, leaving the family to chase them for payment. What happens if a care home refuses to pay or goes bust in the meantime?

By involving the care home, not only has the CCG has created more periphery administration for other parties, but moreover, has now heaped further distress and anxiety upon the family who will have to chase the care home to get their lawful restitution payment released.

This is a farcical situation which also raises a serious question of breach of data protection legislation – paying funds to a third party who have no involvement in the retrospective review process or legal entitlement to those monies.

Tip: If you are successful in your retrospective claim, insist early on that the CCG pay you directly. If they refuse, consider lodging a formal complaint and reporting the matter to NHS England.

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

Scenario 3 – Don’t forget your entitlement to interest!

Reimbursement, often referred to as ‘restitution’ or ‘redress’ should include interest as of right. This is set out in the NHS Refreshed Redress Guidance which came into effect on 1st April 2015.

The Redress Guidance states that “where maladministration has resulted in financial injustice, the principle of redress should generally be to return individuals to the position they would have been in but for the maladministration which occurred.”

That includes paying interest! Part of the rationale is that if the money was not been spent on care fees, it could have been invested and earned interest instead.

CCGs are obliged to add interest to the restitution sum (currently paid at RPI rates) and should provide you with a detailed breakdown showing how they have calculated reimbursement of the care fees and interest payable. If they don’t, just ask them to supply their interest calculation so that you can check it is accurate.

CCGs can make mistakes, so do check the figures carefully, and query any discrepancies with them.

Can I claim interest on my refund of care fees paid?

One CCG recently tried to get away with not paying any interest on the restitution sum awarded following a family’s successful retrospective review.

The CCG agreed the patient was indeed eligible for reimbursement of past care fees paid but deliberately omitted to include interest on the restitution sum.

The NHS Refreshed Redress Guidance provides that where there has been ‘maladministration’ (i.e incompetence) the CCG should pay interest on the restitution (currently at RPI rates). This is an automatic entitlement.

Luckily, the family had the benefit of expert legal representation who saw through the CCG’s attempt to evade paying interest and immediately queried why it was omitted contrary to the NHS Redress Guidance. The CCG responded that it is not their policy to apply interest unless specifically requested to do so! So basically, if you don’t ask for it, you won’t get it!

The CCG said that only if the [family] wrote in to ask for interest, would the CCG then consider the matter and recalculate restitution applying interest.

This is a staggering abuse of power and outrageous policy, deliberately seeking to take advantage of unsuspecting individuals in contravention of the NHS Redress Guidance just to protect budgets. We wonder how many families over the years have simply accepted reimbursement from a CCG believing it to be the maximum extent of their restitution and missed out on interest, without ever knowing that they were automatically entitled to it?

Sometimes, the interest payable can be very significant, especially on a lengthy retrospective review periods spanning back several years or where the monthly care fees paid are substantial.

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

What To Do If You Haven’t Received Your MDT Decision Or Received CHC Funding?

Remember – you don’t have to fight this battle alone. We recommend that you get professional help for any retrospective claim to maximise your chances of success. The sums involved could be considerable.  A good advisor will review all the relevant care and medical records and give you advice as to your chances of success. They can also draft your Written Submissions to argue your case in a professional and robust manner.

Here’s a selection of related blogs on the subject that will help you:

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

Retrospective Reviews for past periods of care – avoiding fatal mistakes

Where is your retrospective CHC claim up to? If you’re frustrated by delays, read on…

How To Recover Care Fees After A Successful Retrospective Review

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

If you need help with your retrospective review – collating records and assessing your relative’s chances of successfully retrospectively recovering care fees or help with advocacy, visit our 1-2-1 Support page for more details.

For more information, browse through our Care To Be Different website to find lot of free tips, resources and hundreds of helpful blogs.

Get our book How To Get The NHS To Pay For Care (paperback or PDF).

You can also speak to a specialist CHC Nurse Advisor or our General Advice Line.

For specialist advocacy or legal help for any stage of your claim for CHC, visit our 1-2-1 Support page.

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Read This Before You Needlessly Sell Your Home To Pay For Care!

Don’t sell your home to pay for care, you may be eligible for NHS funding.

“Funding for care homes is ‘wrongly denied’ to thousands…

AT LEAST 15,000 sick and elderly Britons have been wrongly denied state funding for care home places in the past decade, a nationwide analysis has found – forcing their families to needlessly fork out a total of £30 million.

It is also revealed that most of those initially told by local NHS bosses they were ineligible for residential care funding were suffering life-limiting illnesses such as dementia.

In many cases, residents or their family members have been forced to sell their homes to foot the eye-watering bills, which can reach £6000 a month…”

– The Mail on Sunday (8/11/20)

Although this article was written a few months ago, it is just as relevant today and will resonate with the experience of many Care To Be Different readers whose spouse or relative may have missed out on their entitlement to a package of FREE-funded healthcare from the NHS – otherwise known as NHS Continuing Healthcare Funding (or ‘CHC’). The core essence of CHC is that NHS healthcare is “free at the point of delivery” – i.e when you need it, and this principle is enshrined in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (2018).

NHS Clinical Commissioning Groups (CCGs) carry out assessments to determine whether an individual may be eligible for CHC – a tax-free package of funded care provided by the NHS to people aged 18 and over, that is not means-tested and which pays for all of a resident’s care package (i.e. 100%), including their accommodation, whatever the care setting or care facility they are living in.

However, many thousands of people in England and Wales just don’t know that CHC even exists, or how to go about getting assessed to see if they, or their relative, meet the eligibility criteria for funding.

We hear from families who have been given incorrect or misleading information at the outset which has dissuaded them from making an application for CHC; whilst others who have been turned down by CCGs for CHC Funding, have been subjected to incorrect or flawed decision-making, misinterpretation or misapplication of National Framework’s prescribed assessment process. These negative outcomes have resulted in many thousands of families needlessly paying for care which could and should have been funded in full by their CCG.

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

5 Myths About Continuing Healthcare Funding

Vital Information About Paying For Care

Families who manage to successfully secure CHC often tell us of the huge relief and stress lifted off their shoulders, knowing that their relative’s care (home) fees will be met by the NHS and that their life-time savings will not be eroded to pay for monthly care fees.

However, commonly, the realisation comes too late, usually after their relative’s home has already been sold to pay for their care, or sadly after they have passed away. Whilst a retrospective claim can, of course, be made (within certain time limits), wouldn’t it have been far more expedient if their local CCG or care home had offered to arrange an assessment for CHC at the outset or as the individual’s needs became more complex or challenging? Such proactive steps could have saved the family a fortune in care fees. Remember CHC is free at the point of delivery.

Part of the problem is general ignorance amongst the public who have no idea that CHC Funding even exists!

After all, CCGs don’t volunteer that CHC Funding is potentially available because funding for care comes out of their budget. Care homes don’t often let on about it either, as they can usually charge a self-funding, private paying patient far more than the fixed ‘bed’ rate the CCG will pay them for an individual’s care. So, many thousands of families are blissfully unaware of this pot of free NHS funded care, and needlessly sell their home believing that this is their only option. And, even those who do know or happen to chance upon CHC, struggle to navigate the complex assessment and appeal process or really understand the eligibility criteria set out in the NHS National Framework For Continuing Healthcare Funding.

Make no mistake, the bar to obtaining CHC Funding is set very high, and families often tell us how they felt daunted, out of their depth and overawed by the whole CHC assessment process. Assessments are anxious times for families as the outcome will determine who pays for their relative’s care. Matters are compounded by inherent inconsistencies in interpretation and application of the CHC assessment criteria in the National Framework guidance. Such inconsistency and variance between CCGs throughout the country can result in a wide disparity of outcomes as to who gets CHC and who doesn’t.

Most medical practitioners we have spoken to, including GPs and eminent Consultants across multiple areas of specialty, haven’t heard of NHS Continuing Healthcare Funding, or if they have (or pretend they have), can’t actually explain what it is. Yet all have been trained in the NHS, and/or continue to work within the NHS, or else still have some connection to it. So, if those closely associated with the NHS don’t understand what CHC is, what chance does the average family with a relative in need of long-term healthcare have? Just think how many hundreds of thousands of people could have been recommended to get an assessment for CHC by their GP, before paying a penny for their care.

Similarly, some financial advisors we have spoken to don’t know what NHS Continuing Healthcare Funding is either. The risk is that families could unwittingly be sold an expensive policy to pay for their relative’s care, which might have been free all along, had they had an assessment and been found eligible for CHC Funding.

Certainly, most of the media attention in recent years has focused on the need to improve social care funding as a means of stopping people from selling their homes to pay for care. But, so often, that misses the crucial point entirely! CHC is FREE! It is not means-tested (unlike social care), and therefore, is not dependent on wealth or your ability to pay. If you meet the eligibility criteria – you get CHC.

Daily Mail’s Dementia Campaign – A missed opportunity

Why is CHC always overlooked? Help spread the word…

There was a letter published recently in the Daily Telegraph, where a woman had written in stating that her husband had been in residential care for 4 years with Dementia and had been self-funding his own care, using up his life savings which would have paid for the couple’s retirement. The cost of care was a huge financial drain on their savings and just heaped even more stress onto an already unbearable situation. She writes, “Where did we go wrong? Should we not have saved during our working lives, or spent our spare cash on cruises. Those without savings have their care paid for or subsidised by those funding themselves. Dementia sufferers are ill, and, as such, should be funded by the NHS.”

Like so many thousands of others throughout the country, we suspect that she hasn’t heard of NHS Continuing Healthcare Funding – which might have paid for all of her husband’s care and accommodation in full, without the need to part with his hard-earned savings. It remains a national scandal that people who work hard all their lives and pay their taxes, don’t receive CHC at the point of need.

Are Dementia Patients Missing Out On Proper Assessments for NHS Continuing Care Funding?

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

A full assessment of your relative’s eligibility for CHC is carried out by a Multi-Disciplinary Team (MDT) appointed by their local CCG. The MDT assessors will arrange to meet your relative in their current care setting (e.g. whether in their own home, care/nursing home or other care facility) and review their healthcare needs in conjunction with any available care home and medical records. The assessors will complete a Decision Support Tool, taking an overall view of the your relative’s healthcare needs, before making a ‘recommendation’ to the CCG as to their eligibility for CHC Funding. According to paragraph 153 of the National Framework, “Only in exceptional circumstances, and for clearly articulated reasons, should the multidisciplinary team’s recommendation not be followed”. So, by all accounts, if the MDT assessors positively recommend CHC, the CCG should ordinarily follow that recommendation and grant a fully-funded CHC package.

However, it can happen that the CCG’s panel choose to override their own assessors’ positive recommendation for CHC Funding and supplant their own contrary outcome (i.e rejecting CHC Funding), despite not having had the benefit of actually seeing the assessed individual in person. Why? Some sceptics may say it’s all to do with money and rationing care – in other words practicing ‘financial gatekeeping’ or imposing financial controls, contrary to paragraph 64 of the National Framework and Practice Guidance Note 37.3.

But, if the MDT’s outcome decision is flawed or incorrect and you don’t know how to challenge it, most families will just accept the CCG’s outcome at face value, and needlessly end up using their savings to pay for care or even being forced to sell their home.

You should always be provided with the CCG’s outcome letter setting out the rationale for their decision. If dissatisfied, and you believe that there has been an abuse of process, misapplication of the National Framework or the CCG’s decision is simply wrong, you must challenge it. Beware: strict time limits apply and CCGs will not give you any leeway.

Critical: Before you pay a penny for your relative’s care, make sure that they are first assessed for CHC Funding!

Here’s a selection of articles for further reading:

How To Avoid Selling Your Home To Pay For Care…

COVID-19 – The Impact on NHS Continuing Healthcare Funding (‘CHC’) and How The Current Changes Will Affect You!

10 Common Issues Affecting Families seeking NHS Continuing Healthcare Funding

When are the Government going to fix CHC?

Is the National Framework still working effectively?

“Health Service is chaotic and dysfunctional, says NHS Chief”

BBC Drama, “Care”, Shines A Spotlight On NHS Continuing Healthcare

Paying care home fees or paying for full-time care at home? You could be entitled to NHS Continuing Healthcare.

Funding your relative’s care – who pays?

Help spread the word!

Tell people about NHS Continuing Healthcare

Share your experiences of the CHC process below and tell us if you think your relative was wrongly coerced into paying for their care needlessly.

Act decisively and get expert legal help if you need it! You don’t have to fight this battle alone.

Browse our website for a whole range of free information and resources to help your understanding of the CHC assessment or appeal process.

Contact us directly via our website if you need help with your CHC problem or book a slot with one of our specialist Advice Lines for more involved questions on your care funding issues.

Quite understandably, many families going through the assessment or review process, find it overwhelming and emotionally fraught. There is professional expert legal help available to take the weight off your shoulders at every stage of the CHC process. Visit our 1-2-1 Support page for more details.

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Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 1

This series takes a detailed look at the domains of the Decision Support Tool. This week we examine the first three descriptors in the Skin domain, to help you assess your or your relative’s “level of need” in this important domain.

Don’t miss parts one, two, three, four, five and six of this series:

Get Help Breaking Down The Decision Support Tool: An Overview

Get Help Breaking Down the Decision Support Tool: Breathing Part 1

Get Help Breaking Down the Decision Support Tool: Breathing Part 2

Get Help Breaking Down the Decision Support Tool: Nutrition Part 1

Get Help Breaking Down the Decision Support Tool: Nutrition Part 2

Get Help Breaking Down the Decision Support Tool: Continence

Following the 2018 revisions of the DST, Skin moved “up” from number 8 to number 4. As in the 2012 version, it still follows the Continence domain, highlighting the common interaction between these domains: incontinence greatly increases the risk of tissue breakdown as the skin is often moist. However, unlike the 2012 version, in the updated 2018 DST the Skin domain is followed by Mobility, emphasising the significant impact of immobility on skin integrity. Any interrelation between domains (complexity), and its potential impact on the delivery of care (intensity/unpredictability), should be considered in the analysis of the four Key Characteristics.

The assessed levels of need in the Skin domain range from ‘No Needs’ to ‘Severe’. There is no descriptor for a ‘Priority’ level of need in this domain, indicating that an issue with skin integrity is unlikely to present an immediate risk to life, in and of itself.  That being said, the complications arising from pressure damage or other skin wounds can certainly be life threatening and swift, skilled treatment is essential. The vast majority of people being assessed for CHC will fall into the descriptors for a ‘Low’ or ‘Moderate’ level of need. The ‘High’ and ‘Severe’ levels of need are reserved for those suffering from extensive or non-healing wounds, which will usually require specialist treatment by the Tissue Viability Nurse (TVN).

*IMPORTANT – When looking at skin integrity and its likelihood of breaking down, care providers use the “Waterlow” risk assessment. This brings together a number of risk factors – age, mobility, continence, BMI, prescribed medications – to give an overall score, ranging from “no risk” to “very high risk” – the higher the score, the greater the risk.

The following clinical factors are relevant to the assessment of no needs, low and moderate level needs in this domain:

  • What is the condition of the person’s skin – dry, paper, friable, healthy?
  • Is the person well-nourished and hydrated? What is their BMI?
  • What is the person’s “Waterlow*” score?
  • Does the person have any existing skin conditions – eczema, psoriasis, pemphigoid?
  • Do they require the application of prescribed creams?
  • How frequently are these applied, once daily or more frequently?
  • Is the person continent of urine and faeces?
  • Do they use incontinence products (e.g. pads)?
  • Is the person independently mobile?
  • Are they able to alter their position in bed and/or chair?
  • Do they require prompts, assistance and/or encouragement to change their position regularly?
  • Is any pressure-relieving equipment in use – i.e. cushion, mattress, heel protectors?
  • Is the person’s skin intact (not broken)?
  • What is the extent of any existing skin damage – i.e. how deep are the wounds**?
  • What treatment regime is required and who delivers it?
  • Is the treatment effective – i.e. are the wounds responding/improving?

**NOTE – Wounds are “graded” from 1-4 using a wound chart. Grade1 describes very superficial damage to the top layer of skin (epidermis), such as reddening or blanching. Grade 4 describes extensive damage to all three layers of the skin (epidermis, dermis, hypodermis). Extensive skin damage puts the underlying bones and joints at risk.

IMPORTANT – The DST provides the following guidance to the MDT when assessing needs in this domain: Evidence of wounds should derive from a wound assessment chart or tissue viability assessment completed by an appropriate professional. Here, a skin condition is taken to mean any condition which affects or has the potential to affect the integrity of the skin.

This underlines the importance of having clear, dated evidence to confirm the extent of any risks to skin integrity, their underlying causes and the treatment required. Any skin damage should be clearly recorded on a body map and all wounds should be measured and graded. All treatments and interventions should be recorded in detail, including whether the wound is responding to treatment. This is particularly important for those receiving care at home, where record keeping is often less robust and wounds are treated by District Nursing teams.

Now that we’ve outlined the type of things the MDT will be considering in this domain, let’s take a look at the descriptors for ‘No Needs’, ‘Low’ and ‘Moderate’ levels of need. For each descriptor, we provide a case study to give you a better understanding of how the levels of need might be applied at your or your relative’s assessment.

NO NEEDS

No risk of pressure damage or skin condition.

Key Factors

Healthy, intact skin

No or low risk to skin integrity

Person is independently mobile and fully continent

CASE STUDY – NO NEEDS

Mrs. X’s skin is healthy and intact. She is well nourished and remains fully continent of urine and faeces.

Mrs. X is independently mobile and is able to change her position in bed and chair throughout the day and night.

Mrs. X is not prescribed any emollients or creams, although she does like to use Aveeno after her bath to keep her skin soft which she applies this herself.

Mrs. X presents with ‘No Needs’ as she has no risk of pressure damage or skin condition.

LOW

Risk of skin breakdown which requires preventative intervention once a day or less than daily without which skin integrity would break down.

OR

Evidence of pressure damage and/or pressure ulcer(s) either with ‘discolouration of intact skin’ or a minor wound(s).

OR

A skin condition that requires monitoring or reassessment less than daily and that is responding to treatment or does not currently require treatment.

Key Factors

Moderate risk of skin breakdown

Minor, superficial wounds (grade 1)

Intervention required daily, or less frequently

CASE STUDY 1 – LOW

Summary of Needs:

Suffers with dry skin

Doubly incontinent

Waterlow = 17 (high risk of skin breakdown)

Care Plans:

Skin intact but Waterlow has increased and skin integrity more vulnerable since becoming doubly incontinent

More incontinent now and wears pads

Dry skin to hands, not to body

Spends most of her time in chair. Able to reposition.

Nurse Assessor’s comments:

Mrs. X is doubly incontinent and has impaired mobility and awareness of her various needs. She requires monitoring of her skin condition and is assessed as being at high risk of skin breakdown (Waterlow score of 17). Her care plans on admission and thereafter indicate that her skin has remained intact and baby lotion is applied once a day for moisturisation which has since been changed to Zerobase. Mrs. X is noted to be able to reposition herself for pressure relief, both when seated and lying down. She alters her position spontaneously throughout the day and night and does not require prompts or encouragement to do so.

Mrs. X presents with a ‘Low’ level of need as she is at risk of skin breakdown which requires preventative intervention once a day or less than daily without which skin integrity would break down.

CASE STUDY 2 – LOW

Mrs. X’s skin is healthy and intact. She does not require the application of any creams and does not suffer from any skin conditions.

Mrs. X has been unwell in the past week with a chest infection and she currently has a grade 1 pressure sore on her right ankle after a period of bed rest, measuring 1cm x 1cm. A small dressing has been applied for protection and Mrs. X’s leg is elevated on a cushion to relieve pressure. Care records indicate that the wound is responding well to treatment.

Mrs. X presents with a ‘Low’ level of need as she has evidence of pressure damage and/or pressure ulcer(s) either with ‘discolouration of intact skin’ or a minor wound(s).

CASE STUDY 3 – LOW

Mrs. X has a recent history of cellulitis, and her skin remains vulnerable.

Care Home Records:

  • 02/06/2021: Request Matron visit due to Mrs. X’s legs being swollen, red and angry. Matron checked over, done observation, has cellulitis. Antibiotics prescribed. Also, fluids restricted to 1500mls. Matron also going to arrange bloods. To observe, do NEWS score tomorrow. If becomes redder or tracks up legs to ring 111 for medical advice. If becomes unwell or flu like symptoms, high temp, will need to go to hospital.
  • 14/06/2021: Matron visited to review legs. Redness now reduced, to complete antibiotics. If new concerns to call back.
  • 27/06/2021: Leg healed, no signs of infection or redness.

Additional information provided by senior carer: Mrs. X’s skin is currently intact. She no longer has cellulitis. Her skin is monitored for signs of infection and a body map is completed each week.

Mr. X presents with a ‘Low’ level of need as he has a skin condition that requires monitoring or reassessment less than daily and that is responding to treatment or does not currently require treatment.

MODERATE

Risk of skin breakdown which requires preventative intervention several times each day without which skin integrity would break down.

OR

Pressure damage or open wound(s), pressure ulcer(s) with ‘partial thickness skin loss involving epidermis and/or dermis’, which is responding to treatment.

OR

An identified skin condition that requires a minimum of daily treatment, or daily monitoring/reassessment to ensure that it is responding to treatment.

Key Factors

Incontinence of urine and/or faeces

Restricted mobility or complete immobility (bed or chair bound)

High Waterlow score – at significant risk of skin breakdown

Requires prompts, encouragement, partial or full assistance to alter position

Pressure relieving equipment in use

Prescribed creams applied several times each day

Grade 2 wound(s), responding to treatment

CASE STUDY 1 – MODERATE

No skin problems.

No history of skin conditions.

Doubly incontinent.

Proshield as cleanser and has barrier cream applied after each personal care intervention.

Airflow mattress.

Previously (long time ago) had some redness to sacrum but no longer present.

No pressure ulcers.

Skin condition good.

Emollient once a day after shower/strip wash – all over body.

Care provider records:

SBAR report dated 10/10/2019

Waterlow risk assessment score = 24 (very high risk)

Waterlow risk assessments:

11/06/2018: 23

30/10/2018: 23

18/02/2019: 24

11/06/2019: 24

10/10/2019: 24

Nurse Assessor’s comments:

Mrs X is doubly incontinent, immobile and severely cognitively impaired. She is dependent on the full assistance of 2 members of staff to assist her to reposition regularly and to check and change continence pads and apply barrier creams to help reduce the risk of skin breakdown. She is assessed to be at very high risk of skin breakdown and is nursed on a pressure relieving air mattress when in bed, and has a pressure relieving cushion for use when sitting out in her wheelchair or armchair. Her position is changed every four hours by staff in accordance with her care plan.

There is no evidence of any open wounds, pressure areas, or skin conditions which require any specific interventions from staff greater than basic care to prevent skin breakdown.

Mrs. X presents with a ‘Moderate’ level of need as she is at risk of skin breakdown which requires preventative intervention several times each day without which skin integrity would break down.

CASE STUDY 2 – MODERATE

Family’s Comments:

Grovers disease. Needs twice daily emollients for dry skin condition

Steroids thin skin. Skin tears almost constantly.

Base of spine very sore requires barrier cream twice day.

MDT Notes:

Has skin condition and needs moisturising twice a day and has thin and fragile skin due to steroid treatment.

Weight loss impacted on her sacrum.

Skin is fragile and thin and dry

Emollient (Diprobase)

On admission had scabbed areas.

Skin is very vulnerable.

Prescribed Epaxiban which can also lead to bruising and requires monitoring.

Prescribed barrier cream, applied after each personal care intervention.

Very high risk of pressure sores. Repositioned 3-hourly

Skin checked twice daily – carers report any issues.

Nursed on pressure relieving air mattress and pressure cushion.

Currently has 2cm x 1cm G2 sore at base of spine, dressed with Inadine and Mepore, responding to treatment.

History of numerous superficial wounds.

Care home records:

01/02/2021: Daily records – Dacktocort cream applied on left upper thigh and groin

03/02/2021: Daily records – Blister on his left upper thigh popped out and put a Biatain dressing on that and done the wound care plan

04/02/2021: Daily records – X’s bottom is sore lbf applied arms sore and slightly bleeding nurse advised X is very unsettled

05/02/2021:  X is very confused this morning during personal care noticed bruise on her left foot nurse informed X’s blood blister on leg had popped cleaned and cream applied pad left open

07/02/2021: Daily records – she remains confused at times but was communicating well. Right arm wound checked and assessed.

15/02/2021: Daily records – Assessed skin flap appeared clean and healthy. Granulation apparent. Cleaned and refreshed as per care plan. No concerns raised. Left hand skin flap assessed.

22/02/2021: Daily records – Dressing came off those morning on left forearm, no sign of infection, Biatain silicone applied.

24/02/2021: Daily records – 5/5 cm wound on left forearm is healed no dressing required

MDT’s Comments:

Mrs. X has a diagnosis of Groves disease, which has resulted in her skin being very fragile and dry, and she is prone to skin tears due to use of steroids. She is prescribed a blood thinning medication which increases her risk of bruising.  She is prescribed emollient creams which are applied twice daily and, due to double incontinence, requires the use of barrier cream to reduce the risk of excoriation, which is applied at each personal care intervention.

Mrs. X is at high risk of skin breakdown due to immobility, poor nutritional status and double incontinence and is nursed on a pressure relieving air mattress and is repositioned 3-hourly with the assistance of 2 members of staff.

Mrs. X has sustained numerous superficial skin tears, bruises and abrasions in the short period of time since admission, some of which have required dressing and regular monitoring from nursing staff. They were noted to have healed quickly and there is no evidence to indicate that the wounds became infected or required any specialist dressings. She is currently receiving treatment for grade 2 pressure damage to her sacrum, which is responding well.

Mrs. X presents with a ‘Moderate’ level of need as she has pressure damage or open wound(s), pressure ulcer(s) with ‘partial thickness skin loss involving epidermis and/or dermis’, which is responding to treatment.

CASE STUDY 3 – MODERATE

Mrs. X suffers from eczema. She has extremely dry, friable skin. She is prescribed Epiderm as an emollient, which is applied twice daily. She is also prescribed hydrocortisone cream to manage exacerbations of her condition.

Mrs. X is inclined to scratch, particularly in hot weather. She needs gentle reminders to try not to scratch, as this increases the risk of infection and deterioration.

Mrs. X’s skin is currently intact and healthy, owing to dedicated efforts by staff to ensure her skin is always well moisturised. Staff check behind her knees and elbows each day, as these are usually the sites that are affected first.

Mrs X presents with a ‘Moderate’ level of need as she has an identified skin condition that requires a minimum of daily treatment, or daily monitoring/reassessment to ensure that it is responding to treatment.

For further reading around the subject on pressure sores:

The dangers of pressure sores, pressure ulcers and bed sores

Take a holistic approach to improve your chances of getting CHC Funding

Does the NHS Safety Thermometer’s findings impact on your relative’s entitlement to CHC Funded Care?

NICE Guidelines – Pressure ulcers: prevention and management https://www.nice.org.uk/guidance/cg179

We hope this has helped you to understand the first three descriptors in the Skin domain. Don’t miss part 2, coming very soon!

If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to contact one of our specialist Advice Lines to discuss your case today. If you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 Support page.

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.

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THE ABC OF CHC

Glossary

If you’re new to the arena of NHS Continuing Healthcare Funding (CHC) this article will help you navigate some common terms and issues that you may face along the way to claiming free NHS funded care for you or a relative.

A

ADVOCACY

You are entitled to advocacy support at any stage of the assessment or Appeal process. Don’t let the CCG’s assessors tell you otherwise. If they refuse to let you have an advocate present you must lodge your objection forcefully, as this is a clear abuse of process and instant grounds for appeal. See page 82 of the NHS National Framework.

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

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

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

APPEAL

Unless the CCG state otherwise, you only have 6 months from the date you receive the OUTCOME DECISION refusing or rejecting CHC funding, to launch an Appeal. See LRM and IRP below for more information.

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

Attending an Assessment or Independent Review Appeal?

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

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

Rejected for CHC funding? Part 2: How to appeal the LRP Decision

AVOID PAYING CARE FEES UNTIL YOU’VE HAD A CHC ASSESSMENT

Before there is any discussion about how your relative will pay for their care, where you believe that they have a ‘PRIMARY HEALTH NEED’, you must ask the CCG for an assessment about their ELIGIBILITY for CHC before they pay a penny.

It is contrary to the NATIONAL FRAMEWORK for CCGs to engage in “financial gatekeeping” i.e. employing tactics to try and evade payment of care fees simply to protect their budgets. See Practice Guidance Note 37.3, page 129 of the National Framework.

“So will you be self-funding?”

How To Avoid Selling Your Home To Pay For Care…

Funding your relative’s care – who pays?

Worried about having to sell your home to pay for care?

B

BENEFIT ENTITLEMENTS

Don’t forget that your relative may still be entitled to a range of benefits even whilst in receipt of CHC.

Is your relative claiming their full entitlement to benefits?

BEST INTERESTS

If your relative has lost mental capacity and has not created a LASTING POWER OF ATTORNEY, then you may not have the necessary legal authority to act and can be excluded from making decisions on their behalf. However, all is not lost as you may still be able to get involved in the decision-making process, whilst acting in their ‘best interests’.

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

BEWARE OF YOUR CCG’S ATTEMPTS TO EVADE PAYMENT

It is contrary to the NATIONAL FRAMEWORK for CCGs to engage in “financial gatekeeping” i.e. employing tactics to try and evade payment of care fees simply to protect their budgets. See Practice Guidance Note 37.3, page 129 of the National Framework.

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

Heard of the ‘Grogan Gap’?

Vital Information About Paying For Care

C

CARE ACT 2014

The dividing line between social and health care needs in the COUGHLAN judgment and the ‘PRIMARY HEALTH NEEDS’ approach was subsequently incorporated into the Care Act 2014. The Care Act 2014 has been included into the revised 2018 edition of the National Framework for NHS Continuing Healthcare and reinforces the existing boundaries and limits of what care is the responsibility of a Local Authority, and what is the responsibility of the NHS. The Care Act makes it clear that if an individual may be eligible for CHC, they should be referred to the local Clinical Commissioning Group for an assessment.

CARE FACILITY

A generic term that can refer to a care home, nursing home, hospice or indeed any other setting where care is provided.

What’s the difference between a care home and a nursing home?

Placing a relative into care

CHECKLIST

This is the start of the assessment process. The initial Checklist is a basic screening tool used by CCGs to determine whether an individual should proceed to a full assessment at a Multi-Disciplinary Team (MDT) assessment.

Understanding the Checklist Assessment

Getting through the Checklist assessment – avoid these common mistakes!

Can the NHS refuse to carry out an initial Checklist?

CLINICAL COMMISSIONING GROUP (CCG)

A local NHS organisation responsible for planning and commissioning healthcare services to meet an individual’s reasonable care needs in their local area. CCGs perform the NHS’s responsibilities for assessing, decision-making, implementing and carrying out the NHS Continuing Healthcare packages.

COMPLAIN!

If you remain dissatisfied with any stage of the assessment process or appeal process, or inherent NHS delays, then you must lodge a formal complaint. Don’t wait or else you might be out of time!

Frustrated with CCG delays? Here’s how to complain

CONSENT

Patients who lack mental capacity will need someone to speak for them and act in their BEST INTERESTS to ensure that they are looked after, kept safe from harm and get the proper care and attention that they need when they can’t communicate their needs themselves.

Tackling consent: Keeping control if your relative lacks mental capacity.

Denied access because you don’t have the necessary legal authority to act for your relative?

COUGHLAN CASE

A landmark Court of Appeal case that helped clarify the legislation underpinning the boundaries between health and social care in England and Wales. This distinction, and the need for nationally defined criteria, led to the drafting of the National Framework for NHS Continuing Healthcare Funding (CHC) and NHS-funded Nursing Care (FNC), and the development of the CHC CHECKLIST and DECISION SUPPORT TOOL as a means of determining individual eligibility for NHS-funded community care. See pages 152 and 153 of the National Framework.

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

How relevant is the Coughlan Decision Today?

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

D

DECISION SUPPORT TOOL (DST)

The DST is a scoring ‘tool’ used at the MDT to build a picture of an individual’s health needs across the various 12 Care Domains and helps make informed decision-making as to whether they have A PRIMARY HEALTH NEED and are eligible for CHC Funding. The needs are summarised by reference to the 4 KEY INDICATORS (or Characteristics). If your relative meets the ELIGIBILITY criteria, then the MDT should ‘recommend’ to the CCG that CHC Funding is awarded, and that recommendation should be followed unless there are exceptional circumstances.

DELAYS

See AVOID PAYING CARE FEES UNTIL YOU’VE HAD A CHC ASSESSMENT and COMPLAIN above.

Battling NHS delays – join the queue!

Don’t Give Up When Faced With Ongoing Delays

DISCHARGE FROM HOSPITAL

At present, if an individual is discharged from hospital into a care or nursing home, and require a new or additional package of care, they are automatically entitled to receive free NHS funding for the first 6 weeks of their care, or until such later date as their long-term care needs have been assessed and the outcome is notified to you.

Discharged from hospital to a care home? Is your relative getting their entitlement to 6 weeks’ free care?

Things You Need To Check Before Your Relative Is Discharged From Hospital

DON’T GIVE UP!

The CHC assessment and appeal process is complex and can be frustrating, daunting and emotional whilst battling CCGs for CHC funding. Don’t give up!

Perseverance and stubbornness pays off, so don’t give up!

10 Common Issues Affecting Families seeking NHS Continuing Healthcare Funding

E

ELIGIBLE

In the firsts instance, an MDT Panel will assess whether you are eligible for CHC Funding. If successful, the CCG should pay 100% of your assessed healthcare needs, including accommodation. Watch out for CARE FACILITIES charging UNLAWFUL TOP-UP FEES.

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

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

EXCUSES!

See DELAYS above.

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

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

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

F

FARLEY DWEK SOLICITORS

Established leading experts in the field of NHS Continuing Healthcare Funding who can help you at every stage of your journey through the NHS assessment and appeal process. They work with a team of specialist nurses who have all spent many years working within the NHS, specialising in Continuing Healthcare Assessments. Together, they can offer you expert advice and professional advocacy support.

FAST TRACK FUNDING

Individuals with a rapidly deteriorating condition that may be entering a terminal phase, may be fast tracked for immediate CHC Funding. If successful, CHC Funding for your relative’s care needs should be put in place within 48 hours of assessment.

How To Fast Track The Continuing Healthcare Funding Process.

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

Fast Track Pathway Tool (revised October 2018)

FREE GUIDE

Check this link to get a Free Guide as to the CHC process.

FUNDED NURSING CARE (FNC)

If your relative has been rejected for NHS Continuing Healthcare Funding, but still needs nursing care, then they may be entitled to receive FNC – a weekly sum paid by the Clinical Commissioning Group directly to the nursing home, as a contribution towards the cost of their nursing care needs that are provided by a registered nurse, employed by the care home. FNC is not assessed or means-tested and is tax free.

Don’t Miss Out On Funded Nursing Care!

Have you considered NHS-Funded Nursing Care (FNC)?

G

GET HELP!

Remember, you don’t have to fight this battle alone.

Browse through our  Care To Be Different website to find lot of free information, resources and hundreds of helpful blogs.

Get our book How To Get The NHS To Pay For Care (paperback or PDF).

You can also speak to a specialist CHC Nurse Advisor or our General Advice Line.

For specialist advocacy or legal help for any stage of your claim for CHC, visit our 1-2-1 Support page.

GOOD RECORD KEEPING

You must regularly check your relative’s care home records as these will form an essential part of the assessment (and Appeal) process. Incorrect or missing entries can materially affect the outcome and the chances of getting CHC.

Problems with care home records? Mind your language…

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

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

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

GRANT OF PROBATE

A Grant of Probate (‘Grant’) is legal confirmation from the court that the Will is valid and has been officially registered, and the Executors named in the Will are the only ones with authority to deal with the assets of the Estate.

GROGAN CASE

The Grogan Case came after the landmark COUGHLAN CASE and relied heavily on the legal argument that came out of that case. The court found that NHS Trust (Bexley) had moved the goalposts in terms of defining Maureen Grogan’s level of need (ie she had repeatedly been found ‘ineligible’ for NHS care) and had not followed the Coughlan Test in its decision-making process. The NHS were ordered to pay for her care. See page 154 of the National Framework.

Heard of the ‘Grogan Gap’?

The Grogan case

GUNTER CASE

As the cost of care increases and CHC budgets are slashed, many families are told their relative will have to move into a residential facility in order to receive long-term NHS CHC Funding. The National Framework for NHS Continuing Healthcare provides that CHC Funding can be provided in any setting – even in your own home. So, if your relative is being forced into a CARE FACILITY you must read the Gunter case below.

Are You Missing Out On Your Entitlement To Care At Home? The Gunter Case

H

How To Get The NHS To Pay For Care (paperback or PDF) – An invaluable resource guide to CHC funding that could potentially save you thousands of pounds. ‘Does what it says on the tin’. See TESTIMONIALS below.

I

INDEPENDENT REVIEW PANEL (IRP)

If your appeal to a LOCAL RESOLUTION MEETING is unsuccessful, generally, you only have up to 6 months to lodge an APPEAL to NHS England. You will need to prepare detailed WRITTEN SUBMISSIONS in advance of the Appeal. As this is effectively your last chance of appeal, it is often useful to have a support from a professional advocate to maximise your chances of success.

Rejected for CHC funding? Part 2: How to appeal the LRP Decision

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

INTERIM CARE PACKAGE

Paragraph 112 of the National Framework provides that when an individual is being DISCHARGED FROM HOSPITAL and awaiting an assessment of ELIGIBILITY for CHC, they should continue to receive NHS funded care until a decision has been made. In the meantime, “there must be no gap in the provision of appropriate support to meet the individual’s needs.”

J

JOINTLY FUNDED PACKAGE OF CARE

A joint package of care which is usually part-funded by both the NHS and the Local Authority. See page 69 -70 of the National Framework.

Are You Getting A Joint Package Of Care?

What is a joint package of care?

K

KEY INDICATORS/CHARACTERISTICS

Although the NHS National Framework states that the DST should be used as an aid to decision-making, you still need to adopt a holistic approach by looking at the interaction of needs across all the various Care Domains in the DST and the impact of the 4 Key Indicators (sometimes also known as ‘Characteristics’) – ie ‘Nature’, ‘Intensity’, ‘Complexity’ and ‘Unpredictability’ – when determining whether your relative has an overall PRIMARY HEALTH NEED.

Drafting the 4 Key Indicators is an acquired still and we strongly recommend you seek early specialist help to maximise your chances of success when applying for CHC Funding. See GET HELP!

See also MDT above.

PART 1- Looking At The 4 Key Indicators: Unlocking the basics

PART 2 – Looking At The 4 Key Indicators: Gathering pieces of evidence

PART 3 – Looking At The Four Key Indicators: Completing the Jigsaw

PART 4 – Looking At The Four Key Indicators: Drafting Your Conclusions

Take a holistic approach to improve your chances of getting CHC Funding

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

L

LASTING POWER OF ATTORNEY (LPA)

If your relative has mental capacity, as ‘donor’, they can grant Lasting Power of Attorney to their appointed representative(s), known as their ‘attorney’, to act on their behalf and make decisions (about health and welfare decisions; and/or property and finance) at a time when they can’t do so for themselves should they lose mental capacity. An attorney is usually someone the donor trusts to act in their best interests such as a spouse, child, parent or trusted professional adviser. LPAs automatically lapse on death. See WILLS.

I have a will, so why do I need a Lasting Power of Attorney?

Essential: Have You Got A Power Of Attorney

Self-defence – Protect yourself and make a Lasting Power of Attorney

LOCAL AUTHORITY

Provides SOCIAL CARE which is means-tested, and so you may have to self-fund and pay for all your care needs if you are above the threshold. See SOCIAL CARE and the CARE ACT 2014.

LOCAL RESOLUTION MEETING (LRM)

This is the first stage of the appeal process where the CCG will review its own OUTCOME DECISION if your relative has been rejected for CHC Funding or has had existing funding removed upon REVIEW.

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

M

MATHIAS (PHILIP)

Retired Admiral, known for his boundless energy and tireless campaign to bring the national scandal issues surrounding the unfair and complex NHS CHC assessment process and POSTCODE LOTTERY into the public domain.

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

MENTAL CAPACITY

If you don’t have capacity to make decisions for yourself, you will need someone to make them for you.

Cognition and mental capacity – what’s the difference?

See also BEST INTERESTS, LPA AND WILLS

MULTI-DISCIPLINARY MEETING (MDT)

After receiving a positive CHECKLIST assessment, your relative will pass on to the second stage – a full assessment of their healthcare needs before an MDT.  The MDT panel will consist of at least 2 healthcare professionals, usually from both health and social care disciplines to determine ELIGIBILITY for CCH.

The purpose of the MDT is to make a recommendation to the CGC as to whether your relative is eligible for CHC Funding or not.

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

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

What Is The Role Of The MDT Coordinator?

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

N

NHS CONTINUING HEALTHCARE FUNDING (CHC)

NHS Continuing Healthcare Funding is FREE funding available to an individual to meet the cost of their care and accommodation, whether living in a care/nursing home or in their own home. The place/setting where care is provided is not relevant. Unlike SOCIAL CARE, NHS Continuing Healthcare Funding is not means-tested.

NHS ENGLAND

An organisation supporting the NHS to deliver improved care for patients. Responsibilities include providing strategic leadership, planning, day-to-day operational running of the NHS, NHS budgeting, adherence to the NHS NATIONAL FRAMEWORK, holding CCGs directly accountable and ensuring that they discharge their functions properly, arranging and convening IRPs.

NATIONAL FRAMEWORK FOR NHS CONTINUING HEALTHCARE and NHS-FUNDED NURSING CARE

Put simply – the National Framework is the NHS CHC rule book!

Designed to streamline the assessment process as to eligibility for CHC Funding. Recently updated on 1st October 2018 and consists of 167 pages of guidance governing the whole CHC assessment and appeal process. You need to familiarise yourself with its contents so that you can understand the core essence of CHC Funding, the assessment and appeal process, and use it to your advantage to spot any abuse of process.

The National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised 2018)

O

OUTCOME DECISION

The written decision made by the CCG to accept or reject your relative’s application for CHC Funding whether after CHECKLIST, MDT or APPEAL stages.

What To Do If You Haven’t Received Your MDT Decision Or Received CHC Funding?

Should you pay care fees if your NHS Continuing Healthcare Funding is refused or withdrawn?

P

PALLIATIVE CARE

Is a package of specialised holistic care provided to individuals with advanced, progressive or terminal illness to enable them to have a better quality of life.

PARLIAMENTARY AND HEALTH SERVICE OMBUDSMAN (PHSO)

Often thought of as the ‘last chance saloon’ to lodge your appeal or complaint as to the CCG’s (or NHS England’s) handling of your relative’s application for CHC. The PHSO are usually only interested in matters concerning abuse of process, not OUTCOME DECISIONS that you don’t agree with.

PERSONAL HEALTH BUDGETS (PHBs)

A lump sum of money to support the health needs of the individual agreed in advance between the individual patient, their representative and the CCG. PHBs aim to give patients with long term health needs more choice and control over the money which needs to be spent on their health needs.

What are Personal Health Budgets?

POSTCODE LOTTERY

An often-quoted term to refer to the nationwide disparity as to who is more or less likely to be receive CHC Funding depending purely on where you happen to live. See MATHIAS AND VICTORIA DERBYSHIRE.

Rationing NHS Continuing Healthcare Funding – The ‘NHS’s Best Kept Secret’

‘PRIMARY HEALTH NEED’

To get CHC Funding, your relative must have a ’primary health need’ . In simple terms, there is a dividing ‘line’ between care that the NHS must pay for which is free of charge and not-means-tested, and care that is the responsibility of a Local Authority, which is means-tested.

See also: KEY INDICATORS

‘Primary health need’ made simple – what does it really mean?

Apply for NHS Continuing Healthcare Funding if your relative has a ‘primary health need’…

Q

QUESTION AND CHALLENGE

Don’t be fobbed off if you are told that your relative won’t qualify for CHC Funding! No one can reach that decision until a formal assessment of their healthcare needs has been done.

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

5 Myths About Continuing Healthcare Funding

R

RATIFICATION

The CCG should approve the MDT’s recommendation to grant CHC Funding. Failure to do so could lead to an APPEAL. See paragraphs 153 to 157 of the National Framework.

RETROSPECTIVE REVIEW

If you believe that your relative had a PRIMARY HEALTH NEED, you can ask the CCG to undertake a retrospective review of past care fees that were wrongly paid. If successful, your relative will be entitled to reimbursement and interest.

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

Retrospective Reviews for past periods of care – avoiding fatal mistakes

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

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

Can I claim interest on my refund of care fees paid?

REVIEW

Once CHC Funding has been awarded, CCGs should carry out a review initially after 3 months, and then every 12 months thereafter to ensure that the CHC package of care in place is still adequate to meet your relative’s needs.

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

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

Can CCGs Use Annual Reviews to Ration Care Funding?

S

SOCIAL CARE

Social care needs are provided by the Local Authority (Social Services) and are means–tested. So, if your relative has capital or assets above the threshold (currently £23,500) then they may have to pay for all their care (known as ‘self-funding’).

Social care includes things like needing help with well-being, activities of daily living, helping to maintain independence and social interaction and avoiding risks in vulnerable situations. Common examples of social care needs might include: help with getting in and out of bed, getting dressed and washed, toileting, meal preparation and eating, and assistance when going out shopping or visiting family and friends.

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

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

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TESTIMONIALS

See what our readers say about us.

Share your experiences of CHC and learn from others who have been through the assessment process when you join the conversation on Facebook.

U

UNLAWFUL TOP-UP FEES

If your relative is awarded CHC Funding, it is supposed to cover all of their assessed healthcare needs and accommodation. CARE FACILITIES should not try and charge them any extra. However, ‘hotel-style ‘or ‘spa facilities’ or personal preferences can lawfully be charged. Challenge any unlawful top-up fees.

Are You Paying Top-Up Fees Unnecessarily?

Have you been coerced into paying unlawful care home top-up fees?

TOP-UP FEES – Unfair Care Home Practices Now Face Government Sanctions

Paying Unfair Top-Up Fees? Latest Developments Will Send Shockwaves To Care Homes

V

VICTORIA DERBYSHIRE

Her BBC programme (11/06/19) exposed the national scandal surrounding CHC and the POSTCODE LOTTERY. Andrew Farley of FARLEY DWEK and ADMIRAL MATHIAS were prominently featured on the programme.

Exposed: NHS Continuing Healthcare makes headline BBC News

https://www.bbc.co.uk/iplayer/episode/m0005x2h/victoria-derbyshire-11062019

VISIT

Visit our website caretobedifferent.co.uk for lots more free information and resources to help you understand the CHC process and secure your relative’s entitlement to fully-funded NHS care.

W

‘WELL-MANAGED NEEDS’

CCGs often try and evade ELIGIBILITY for CHC by arguing that the individual’s needs are ‘well-managed’ and so they don’t qualify for CHC. Watch out for this ploy as well-managed needs are still need! Just because a need is under better control (ie well-managed), doesn’t necessarily mean that it has gone away – it may still exist, but is just better handled – that’s all.

Using the ‘Well-Managed Need’ Principle To Your Advantage

Do you really understand the “Well-Managed Needs” argument? – 2018

Care is routine” – misleading NHS Continuing Healthcare information

WILLS

A Will is a legal document setting out what you (the ‘testator’) says should happen to your estate (e.g. your property, home, bank accounts, investments, savings, assets, possessions and personal belongings etc.) after you die, and enables the testator to appoint chosen representatives (known as ‘Executors’) to automatically deal with their estate after death.

Is your Will up to date?

Why you should consider making Lasting Power of Attorney or a Will

WRITTEN SUBMISSIONS

A written document to be lodged with the CCG prior to an appeal to LRM or IRP, setting out your arguments as to why your relative is entitled to CHC Funding. A critical document that needs careful consideration with supporting evidence as to need. Can take considerable time to draft well. We recommend seeking professional advice here.

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

X

‘EXPECT’

Expect delays! CCGs are generally under-staffed and under-resourced and therefore slow to process appeals. COVID has, in most cases, compounded delays and created huge backlogs for CCGs. Unfortunately, this can often mean that an application for CHC Funding turns into a RETROSPECTIVE CLAIM if the individual passes away in the meantime.

Y

YOU MUST…

We strongly recommend that you prepare for your MDT or appeal diligently and well in advance. Do not leave your preparation until the last minute! Collate all necessary care and medical records in advance and familiarise yourself with the NATIONAL FRAMEWORK. Remember to get your WRITTEN SUBMISSIONS in on time. Get professional help early on if you need it.

YOUNG ADULTS ARE ENTITLED TO CHC TOO!

Remember that CHC is available to anyone over the age of 18 who has a PRIMARY HEALTH NEED and that includes young adults, too, not just the elderly and infirm with chronic and challenging long-term illnesses.

For young adults with complex needs, you may be pleased to hear of a unique service offered at: https://www.farleydwek.com/young-adults-with-complex-needs/

Who Is Entitled To CHC? 

Z

ZERO TOLERANCE!

If there has been a clear abuse of process or unreasonable DELAY, don’t wait! Chase the CCG frequently for progress. Delays could result in you paying many thousands of pounds in care fees each month unnecessarily, or even having to sell your relative’s home to fund their care whilst waiting for the CCG to respond.

If you need to help, call us on 0161 979 0430 or email your enquiry to enquiries@caretobedifferent.co.uk

If you want to speak to a specialist CHC nurse or just get some general advice about your case, visit our Advice Line Services  or else get 1-2-1 expert legal support and advocacy help with your assessment or appeal.

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