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
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.
February: Most frustrating
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!
March: Most informative
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.
April: Most topical
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?
May: Most successful
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.”
June: Most exposed
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.
July: Most judicial
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
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.
September: Most outrageous
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
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.
November: Most scandalous
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.
December: Most challenging
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).
Our chosen top award 2019: Most ludicrous
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.
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