Care To Be Different 2019 Year in Review

Care To Be Different 2019 Year in Review

Care To Be Different remains the No.1 website for free information and resources relating to NHS Continuing Healthcare Funding.

We strive to promote nationwide awareness of the availability of free NHS funding for long term care, and provide help for individuals and families going through the complex NHS assessment or appeal process.

We wanted to thank all our readers and contributors for your continued interest in our website and for engaging in conversation with others at the end of each blog, or on our Facebook page, and for openly sharing your personal experiences to help others facing the same or similar problems.

At the core of the National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care is the basic principle that FREE healthcare should be available at the point of need from ‘cradle to grave’, irrespective of wealth, and no matter where the care is provided (e.g. in a care or nursing home, or even in your own home).

However, we know from experience, and that of our many contributors over the years, that getting free NHS Continuing Healthcare Funding (or ‘CHC’ for short) is far from straightforward and can be a daunting, complex and overwhelming process for most families undertaking this journey.

The assessment process can take many months (despite the timescales imposed by the National Framework). It is flawed, and relies heavily on subjective interpretation of healthcare needs against a range of descriptive criteria. Unfortunately, such subjectivity can lead to abuse, providing inconsistent results across the country as to who is more likely to be awarded NHS Continuing Healthcare Funding. The lack of robust, fair and correct decision-making across the country is frequently referred to as ‘the postcode lottery’.

The appeal process can equally take too long. For example, retrospective cases to recover wrongly paid care home fees usually take on average 2 to 5 years to reach an outcome – sometimes longer! In the meantime, individuals can be forced to pay vast sums of money for their care – often having to use hard-earned savings or selling their home, to release necessary private funds.

In 2019, Care To Be Different have produced 54 blogs, highlighting some of the issues and scandals surrounding NHS Continuing Healthcare Funding. Our articles are crammed with useful guidance and tips to help you battle the NHS to get CHC Funding for your relative.

It’s been a tough choice but here are our top awards for each month of 2019:

January: Most infuriating

Winner: More ‘red tape’ leads to delays in payment

Read a case study about how the CCG unilaterally sought to delay reimbursement of retrospective care fees by imposing new hurdles and stipulations by inappropriately seeking additional (unnecessary) proof of ID and capacity to act. Read how the CCG’s misunderstanding of the law and the National Framework, combined with blind intransigent adherence to self-made bureaucratic guidance, ‘red tape’, and a lack of common sense, helped facilitate tactical delays to try and avoid repaying care home fees that were wrongly paid.

Runner up: 14 Top Tips for 2019 to help you – Continued Part 2

February: Most frustrating

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

Read about the NHS’s spectacular failure to tackle retrospective claims efficiently and promptly following its imposition of the 31st March 2012 deadline to register claims for NHS Continuing Healthcare Funding. Families have been left frustrated, angry and anxious that their relative’s claim has been left languishing for so long, whilst the CCGs failed to allocate sufficient resources to tackle these long-standing backlogs. Read our case study about a retrospective claim for reimbursement of care fees, and the NHS’s typical excuses for delays. We offer tips to combat institutional the delays. Complain. Don’t be fobbed off. Don’t give up!

Runner up: Can the NHS refuse to carry out an initial Checklist?

March: Most informative

Winner: Using legislation to safeguard your relative in care – Deprivation of Liberty Safeguards (DOLS)

There can be circumstances when vulnerable individuals in care need to have their independence removed or their free will restricted in some way, if it is in their own best interests and safety, and to prevent them from coming to harm, or from harming others.

These restrictions on an individual’s freedom are known as ‘deprivation of liberty’. This helpful article focusses on the essentials you need to know about deprivation of liberty safeguards (or ‘DOLS’), when you can deprive someone of their liberty, who is likely to need DOLS protection, how is DOLS authorised, who can act as the relevant person’s representative (RPR) and what are their duties.

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

April: Most topical

Winner: This month’s key questions about Continuing Healthcare Funding

This blog deals with many common questions raised, such as:

  • Why does the NHS not tell you about your right to claim NHS Continuing Healthcare Funding?
  • So, why don’t Care Homes push families to get CHC Funding?
  • Isn’t it all about the money and who pays the care home fees?
  • Do I stand a better chance of getting CHC Funding depending on where I live?
  • So why is there such a discrepancy as to who is entitled to CHC funding?
  • My father has Alzheimer’s so surely he automatically qualifies for CHC?

Runner up: Focus: Looking at the four key indicators (characteristics) from the NHS’ perspective

May: Most successful

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

Learn from one of our famed campaigners, Rear Admiral Phillip Mathias (retired), about his lone 2 year fight with Wiltshire CCG to recover over £200,000 in wrongly paid care home fees for his elderly mother. Read about the ‘NHS’s best kept secret’, and your rights to have advocacy support.

Admiral Mathias told the Daily Telegraph:

“This is probably one of the biggest financial scandals in the history of the NHS. It also causes untold stress and anxiety to very ill people when they are at their most vulnerable and is often a major distraction to their families, as they battle with CCGs, when they should be focussed on their loved ones who are often approaching end of life. It is an utterly disgraceful situation, given that the purpose of the NHS is to alleviate suffering, not to create it.”

“If someone with my experience and expertise found the process so difficult, my concern is that so many people who are applying for funding their loved one is entitled to will just decide it is not worth the stress, especially if they are also elderly themselves.”

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

June: Most exposed

Winner: Exposed: NHS Continuing Healthcare makes headline BBC News

Victoria Derbyshire highlights on TV the national scandal surrounding thousands of vulnerable patients who been refused NHS Continuing Healthcare Funding. Her bold BBC exposé, raises the issue publicly for the first time on TV and includes powerful and emotional testimonies and exclusive interviews with families who have had to battle the NHS for many years to get CHC Funding for their relative. Her reporter meets families at the point of exhaustion and frustration, who retell their heart-rending personal accounts of how their claims were rejected and their determined struggle to get CHC Funding.

Runner up: Retrospective Reviews for past periods of care – avoiding fatal mistakes

July: Most judicial

Winner: How relevant is the Coughlan Decision Today?

The Coughlan Judgment in 1999 remains the single biggest legal landmark case in the area of NHS Continuing Healthcare Funding and is just as relevant today.

Read more about Pamela Coughlan’s courageous fight for CHC Funding, the distinction between ‘health’ needs and ‘social’ needs, and the principles of the ‘primary health needs’ approach, that have been embodied in the National Framework for NHS Continuing Healthcare Funding.

Watch Pamela Coughlan’s interview and learn from her successful Court ruling, and how it has raised hope for thousands of others battling the NHS for CHC Funding.

Runner up: Focus: Falling at the care home

August: Most argumentative

Winner: Attending an Assessment or Independent Review Appeal?

If you have ever been told by an NHS representative at an assessment or appeal that you cannot have a representative, then don’t be fobbed off.  That is absolute nonsense!  You are absolutely entitled to have anyone you choose to represent you, whether they have a legal background or not.

Fighting the NHS to get CHC Funding for your relative can be a daunting and highly emotional experience. This article explores a common misunderstanding and NHS myth that you can’t have, or you don’t need, an advocate to support you at the assessment or an appeal. This is contrary to the National Framework, which states that it is permissible to have an advocate of your choice in attendance. If you need help with your relative’s case and are thinking about advocacy support, then read this helpful article.

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

September: Most outrageous

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

The National Framework provides that where an individual has been granted NHS Continuing Healthcare Funding the position should be reviewed at 3 months from the eligibility decision, and thereafter at least every 12 months, to ensure that the package of care is still adequate to meet your relative’s healthcare needs. However, these reviews can often present an opportunity for some CCGs’ assessors to argue that there has been a change in an individual’s needs, such that CHC Funding may no longer be appropriate and should be withdrawn. Although healthcare needs can fluctuate over time, many decisions to remove funding have been made in cases where it blatantly ought to be approved, leaving families aggrieved and angry, and having to fight lengthy appeals for it to be reinstated.

Runner up: Don’t Give Up When Faced With Ongoing Delays

October: Most controversial

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

Read what a specialist nurse advocate has to say about the latest scandal surrounding abuse of Fast Track assessments, which are being inappropriately used. In order to move individuals out of hospital quicker and avoid ‘bed blocking’, Fast Track funding is being awarded and families are encouraged to find a suitable care home for their relative on the understanding that the fees will be met in full by the NHS. However, what isn’t being made clear to them is that their relative will be reassessed in 3 months’ time and are likely to have their funding removed. Families can be faced with the stark choice of having to pay huge care home bills from private funds (and even selling their home) to avoid their relative being evicted, or else face the distress and upheaval of moving their fragile relative to a more affordable care home.

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

November: Most scandalous

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

Read about the latest NHS’s latest tactics to delay or defer a full assessment for NHS Continuing Healthcare Funding by Multi-disciplinary Team and the anguish caused to families, as the NHS includes an artificial stage (‘optimisation’) into the assessment process in an attempt to try and save funds – leaving families to pay for the relative’s healthcare in the meantime.

Runner up: Know your rights – Appealing the CCG’s refusal to grant CHC funding.

December: Most challenging

Winner: Has your relative been ‘made’ incontinent and developed a pressure sore?

Is it ever acceptable to make someone incontinent? Families with a relative in a care home setting may recognise this common scenario. A lack of funding or staffing may make it cheaper and more convenient for a care facility to leave a frail or fragile individual in an incontinent state, rather than spend the time and resources on more frequent changes of their incontinence wear. Less frequent checks and changes of incontinence products can lead to moisture lesions and pressure sores which can develop very quickly if skin integrity is not closely monitored. Pressure sores can be agonisingly painful and can cause deep infection resulting in loss of limb and death. Skin should be kept free of damage at all times and most pressure sores are entirely avoidable with good prevention (eg ‘S SKIN’ bundles).

Runner up: PART 2 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

And finally…

Our chosen top award 2019:  Most ludicrous

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

Many people are not told about CHC Funding (often described as the ‘NHS’s best kept secret!’), and many families who do ask about it on behalf of a spouse or elderly relative are simply told they won’t get it – and that there’s no point in doing an Assessment. This is not only completely wrong (because everyone with health needs going into care should be assessed for NHS Continuing Healthcare Funding), but it also puts families off pursuing things further. Sadly, it means that many elderly or vulnerable people, often wrongly sell their homes and everything they own to pay for their care, that should be paid for in full, free of charge, by the NHS. We share with you the 10 most outrageous reasons we’ve heard for not being assessed and our tips on what to say in response.

We’ll be back in the new year with more helpful articles, tips and resources to help you at whatever stage of the NHS assessment or appeal process you find yourself.

Until then:

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

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

Share your experiences with others and leave your comments below…


  1. Valerie Bradley 2 months ago

    You know that the best thing you can do for your loved one’s is to tell the social services, you are not paying the care Bill’s because your relative have been defrauded out of continuing healthcare, so untill my relative is granted CHC you can send the bill to the NHS to pay,the social services cannot stop the care package, for non payment,and if you get taken to court you be able to explan that l should not be paying for care as my relative should be funded by the NHS,get their medical files for the court if you are up for this you will throw a spanner in the LA’s and NHS works

  2. Michelle wetherall 3 months ago

    Thank you CTBD for compiling the review and huge thanks for continuing to help families going through this horrendous process.
    As you know I was successful at the IRP which took place in April last year and my mother was refunded my late father’s nursing fees two days before Christmas, some 8 months after the the IRP. The lengthy delay was a combination of the IRP decision taking the best part of 16 weeks and then the rest of the time the CCG administration. It would have been even longer had I not be able to provide all the evidence of care home invoices, receipts, bank statements and identity documents. These I had kept meticulously filed.
    The process would have undoubtedly not been concluded before Christmas had I not kept up the pressure on CHC/CCG to pay up.
    Now reflecting on the last four years and all the work and hours and hours (hundreds and hundreds) I realise that I could not have done it without this website and the invaluable contributions made by extraordinary individuals who have given their experiences and advice to help others.
    Thanks also to CTBD for all the excellent articles that have been my encyclopedia and bedtime reading for the last 4 years!
    I am not quite finished with this process as I continue to highlight the 20% tax taken from the interest of the fees restored or indeed the care home provider, but I will be using the website less and less and as I move on with life I just wanted to say to all those starting out on this process is don’t give up when the going gets tough. It may feel like an utter waste of time and energy, but IF you Genuinely believe that your loved one has a Primary Healthcare Need as set down by the NF, then fight on to prove it.
    It will take a huge amount of your time, but with anything in life, the more you put in the more you get out. Do your research/homework… read read.
    Keep the paperwork in order and if at all possible keep a daily diary of your loved one…..
    My diary of my dad was invaluable and in some instances proved far more detailed than the notes provided by the home.
    So Good Luck to everyone who is starting the year faced with the monumental task of taking on the NHS. This time last year I felt overwhelmed and daunted by the prospect of attending an IRP with a panel of 6 “judges”, but I compiled my evidence, presented the case and proved overwhelming that my CHC had failed to assess my late father correctly at the first assessment and had also wrongly withdrawn funding after 3 months following the fast track pathway funding having been granted.
    I will continue to glance the website to see if I can offer support but as time goes on and I hopefully never have to go through this again, I will be using it less and less.
    Huge thanks also go to Angela Sherman and Professor Luke Clements. If anybody deserves New Year’s Honours these two do!!!!!!

    • Care to be Different 3 months ago

      Thanks Michelle. All the best for 2020. Kind regards

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