On the 17th of February 2020 the Daily Telegraph led with a front page headline article, “Dementia patients dumped in hospitals“.

The article told of the closure of numerous day care centres and care services across the country, forcing an extra 100,000 Dementia patients to seek care in Accident and Emergency each year.

Sir Simon Stevens, Head of the NHS, warned that, “pressures in social care were now putting real strain on families, carers and hospitals”.

Social care is funded by the Local Authority and relates to the activities of daily living, such as assisting someone to maintain social interaction and their independence or preventing them from coming to harm in vulnerable situations. For example, getting help with washing, dressing, mobility, meal preparation, feeding and toileting etc. Social care activities are designed to provide service users and patients with interaction, company and stimulation and to help them lead a more independent life. Drop-in centres, lunch clubs and meals-on-wheels are just some of the typical services that some day centres may provide.

Chronic underfunding of social care has led to the closure of an increasing number of day care centres and related services throughout the country.  According to the Daily Telegraph, this has resulted in Dementia sufferers attending A&E in increasing numbers, with some apparently remaining on hospital wards for many months (and in some cases even up to a year) – due to a lack of support and funding to help them maintain their social independence.

The lack of social care funding is inevitably putting a huge strain on the individual sufferers, their family, friends and carers. As families and the care system can’t cope, it is easier to refer their relative to A & E to seek immediate help. Time in hospital also provides some respite for families and carers alike. The buck then passes from the Local Authority (Social Services) to the NHS, exerting even more pressure on their already stretched resources.

We learn from the Daily Telegraph’s investigation that this situation is being fuelled by cuts to existing social services supposedly in place to help the elderly, frail and vulnerable in society to live in a safer environment with dignity.

Some cuts to social care services in different parts of the country are more drastic than others – with the worst cuts reported in the Southwest, where 7 centres offering social activities have reportedly closed in the past three years, compared to only one in the North-West.

It is well documented from all the recent media coverage, even preceding the recent General Election, that social care is grossly underfunded – particularly for Dementia sufferers. The Daily Mail ran an extensive campaign focussing on the lack of social care funding. Read our blog:  Daily Mail’s Dementia Campaign – A missed opportunity.

The Government is committed to pumping vast sums of money into relieving the pressure on the social care system, care homes and homecare. The Prime Minister has pledged to “fix the social care crisis once and for all”.  Sir Simon Stevens is reported to have said: “For the record – high number of people living with dementia and their families, health and social care are essentially two sides of the same coin. That’s why the Government welcome commitment to a long – term plan for social care – to ease the pressure on home – care and care homes, which is putting real strain on families, carers, and hospitals – is so important“.

As an aside, we don’t share the Minister’s view that social care and health care are flip sides of the same coin. They are different, both in how their respective services are carried out and how they are funded. Healthcare is provided by the NHS and is ‘free at the point of need’.  Whereas social care is provided by the Local Authority and is means-tested, so you may end up paying for some or all of your social care. There is often a fine dividing line between social vs healthcare needs which causes confusion even amongst professionals. The importance of this distinction determines who pays for care.

We anticipate that the social care funding crisis is going to take many years to resolve, and it’s not going to be a quick fix nor simply a question of throwing money at the problem (although that would be a good start!). We believe that a root and branch review of the social care funding system is required. Better care facilities and improved living environments, together with better trained staff and higher quality standards will undoubtedly help. Dementia sufferers shouldn’t have to go to hospital to receive care or be housed in a safe environment. They and their families should be able to access care and social interaction within the community. Hospital admission may be a convenient outlet for those in desperate need, but surely this is a huge waste of valuable NHS resources and can only exacerbate ‘bed blocking’.

So, if the UK system is failing Dementia sufferers, where else can they turn?

Consider this alternative. Ever thought of providing your relative with care abroad?

There was an interesting article recently in The Guardian, “Families sending relatives with dementia to Thailand for care.”

The Guardian’s article suggests that there are an estimated 850,000 people living with Dementia in the UK, with local authority residential care costing up to £700 a week and private care costing around £1000 a week. Staffing levels in state and private care facilities are thought to be on the ratio of around 1:6 i.e. one carer for six patients/residents in a care facility. Some patients, may of course, have higher levels of need than others, and monopolise a carer’s time; meaning that five other residents who may be equally needy are not getting the same attention they deserve or require. Many care facilities are understaffed and will be forced to cut corners where they can to save funds and survive. After all, they are running a business. However, this could be to the detriment of your relative who may be left alone, isolated or unattended to for long periods of time. If family members or friends don’t visit their relative regularly, they can’t really be sure what is happening at the care home on a day-to-day basis. Look beyond the lovely grounds and surroundings, fittings, furniture, glossy brochures and attractive websites!

Substandard or unsuitable care in the UK is motivating a wave of ‘medical migration’ abroad.

There now seems to be a growing trend of families moving their relative abroad to get better care at a more affordable cost (referred to in the article as “medical tourism”).

The Guardian’s article focusses on care in Thailand, where “1:1 around -the-clock residential care in a care facility with fully qualified staff – in award – winning facilities that look like four star hotels – costs around £750 a week.” That is similar to the lower end of the scale cost of a care home in some parts of the country (and less than half the cost of some care homes in London and more affluent areas). But, the apparent advantage of a move to Thailand, is that your relative can get one-to-one personal 24-hour care. On the face of it, that seems highly attractive both financially and more importantly, from the comfort of knowing that your relative will be receiving excellent individual round-the-clock care for their needs. Unless radical reforms are made to increase social care funding, this new trend is likely to gather momentum over time and even be extended to other countries, perhaps nearer to home. ‘Medical migrants’ could become more common as families seek alternative more affordable (and better) options for their relative’s care needs.

The Guardian records Peter Brown’s story who moved to Thailand from the UK and founded care resort Chiang Mai, six years ago after becoming unhappy with the quality of care his mother was receiving in her British care home. He told The Guardian, “I don’t believe there are any relatives in the world who want to export their mother and father to a different country…What they want is care for their mother and father they are entitled to and unfortunately, the local city is incapable of giving them. They don’t want their mother and father locked away for 23 hours a day, sat in a corridor for one hour and put back into their room, so they start to look around for alternative options. There are plenty of options in a separate country, so how can you blame them for taking it.”

For many families, there will, of course, be a dilemma between seeking the best available care for their relative in the most comfortable and affordable surroundings on the one hand – versus the emotional upset caused by having a close relative living so far away, and not being in ‘control’ of their care, plus the distress to your relative of being exported to new and unfamiliar surroundings, with unfamiliar dietary options. Plus, families considering this move need to factor in the practicalities. You can’t simply pop in several times a day or on your way to or from work to check on your relative and to make sure that they are OK and receiving the standard of care you expect; that they’ve been washed, having proper nutritional intake and fluids, are fully clothed and not left sitting or lying in soiled clothes all day due to neglect.

In some cases, exporting your relative into care abroad may also mean families having to move abroad to be with them, or else spending longer periods of time abroad, say a month or  two at a time, several times a year (which also incurs travelling and accommodation expenses).

Whilst some families may be absolutely delighted with the care and attention their relative is getting in their chosen care home in the UK, we suspect that there are many more families who are very unhappy. We believe that this is largely due to the fact that most care homes are grossly underfunded, which in turn means cutting corners and reduced staffing levels or compensating by recruiting low quality staff. We have read some damning Care Quality Commission (CQC) reports requiring immediate improvement. Some care facilities are not fit for purpose. Common complaints from families include poor hygiene standards, dirty rooms, urine stained floors, and being in need of urgent refurbishment – a distant cry from the outdated sales brochure or online glamorous pictures taken some years ago.

But, for families like Peter Brown, to even contemplate the upheaval of moving a relative to the other side of the world to find excellent care, illustrates how our social care system is failing families and the standards in care facilities need improvement and radical reform.

Conclusion

The move to Thailand, or indeed elsewhere abroad, may well suit some families and have its attractions if the reported care is such good value for money, but for the vast majority of British citizens, it will be ‘life as usual’ and daily complaints about the poor state of social care in the country.

However, over time more families may take the view that the  emotional upset and overall financial investment of moving a relative abroad to get better care, is worth the risk for the sake of their relative’s wellbeing, and to enable them to enjoy a higher of standard of living and care, but at a more affordable price.

What is your experience of the care standards your relative is receiving?

In what circumstances would you consider moving your relative to a care home abroad?

We recommend these helpful articles for further reading around the subject:

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

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

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

So will you be self-funding?

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

Daily Mail’s Dementia Campaign: “Time To End The Dementia Care Bills Betrayal” – A missed opportunity to promote CHC?

The Daily Mail ran a front page cover on Wednesday 17^th July 2019 seeking to raise awareness for their new campaign, championing dementia sufferers who have been neglected by the Local Authority (Social Services) system and had to sell their homes to pay for the crippling cost of their care needs. The Daily Mail calls on Ministers and the new MP to stop this scandalous injustice affecting millions.

The Daily Mail reports that they have been inundated with letters from readers who have spent £15 billion over the last two years supporting relatives with dementia, many of whom have been forced to sell their homes to pay for care.

Daily Mail ‘Comment’:

“The social care system is no longer fit for purpose.”

“Forced to sell their home or raid savings they have toiled all their lives….Unjustly wiping out nest eggs intended for their loved-ones..”

 “To add insult to injury, pensioners who are thrifty and careful, putting money aside for a rainy day, are punished with gargantuan fees, while the feckless without savings get everything free.  This is nothing short of a monstrous tax on the ill”.

The Dementia campaign calls upon the new Prime Minister to look at other funding options and the creation of an ‘NHS Dementia Fund’ to help families pay the extra costs of looking after dementia sufferers, arguing that “no one should be forced to sell their home to pay for their dementia care costs.”

The Daily Mail features a double page spread (“DEMENTIA CARE: YOUR FURY”) full of heart rending testimonies from relatives of dementia sufferers, explaining how their spouse or parents have worked all their lives but who have had to sell their home or “chew” up all their hard earned savings to pay for care – calling it a national disgrace – whilst others with different diseases, such as cancer, get care support free on the NHS. The Daily Mail calls it “a cruel injustice that must now end.”

The Daily Mail attributes 8 full pages to their campaign to raise awareness and increase social care funding for dementia sufferers. They say that “Around 180,000 dementia patients live in care homes in England and 74,000 of them all pay fees themselves.  Many of the remaining 106,000, only get part of their costs paid.”

All 8 pages focus purely on funding dementia from a SOCIAL needs perspective. Whilst the social care funding may indeed be broken and in urgent need of major reform, at no stage is NHS Continuing Healthcare Funding (CHC) discussed! This is a fundamental omission and a huge missed opportunity to educate the public and raise awareness about CHC! 

We believe that the Daily Mail should have told its readers, that these families and many thousands of others around the country, may not have had to sell their home or use lifetime savings to pay for their relative’s care in the first place, if they have a ‘primary healthcare need’ – in which case the NHS should pay for ALL their healthcare and accommodation needs.

Read our blog to find out more about primary healthcare needs:‘Primary health need’ made simple – what does it really mean?

Care To Be Different know that individuals just aren’t being signposted to this FREE package of fully-funded NHS care, and so are missing out on many thousands of pounds a month in funded care, and are self-funding instead. That is the real national scandal! The Daily Mail needs to say much more about NHS Continuing Healthcare funding!

So, it’s not just dementia sufferers who are losing out and having their life’s savings wiped out to pay for care. The scandal goes much deeper than that.

By only focusing on the inadequacy of social care funding to pay for dementia care, the Daily Mail campaign has missed the whole argument, and a great opportunity to raise awareness  of NHS Continuing Healthcare funding amongst its readers (and to help them get a retrospective refund for care home fees wrongly paid).

NHS Continuing Healthcare Funding  is free at the point of use.  Wealth is never a consideration. Therefore, people who have worked all their lives, paid their taxes and put saving aside for a ‘rainy day’ may be entitled to FREE care from the NHS, if they have a health need, regardless of their wealth. It is a matter of health.

However, social care is funded by the Local Authority (Social Services), is means-tested, and is therefore a matter of wealth. It should ONLY be considered once an individual, who has a ‘primary health need’, has first been assessed for NHS Continuing Healthcare funding (or ‘CHC’ for short).  In simple terms, Primary health needs can be thought of as needs over and above what the Local Authority are legally obliged to provide.

So, some dementia sufferers may have a low level of care needs, and just require additional social care support with some of their daily tasks eg assistance with mobility (hence Local Authority funding); but others, for example, may have more advanced cognitive impairment combined with other complex medical needs that require 24 hour monitoring and intensive nursing care (and hence may be eligible for CHC Funding).

 “The grossly unfair system means that someone diagnosed with a medical condition, for instance cancer, has their bills met by the NHS, whilst someone with dementia – which requires social care – faces financial ruin”.

Baroness Ros Altmann, a former Pensions Minister adds, “A millionaire who contracts cancer can expect the best treatment available on the NHS, without having to fund it personally. All the costs are met by the tax system, with care free at the point of need.”

Why should there be any differentiation between these medical conditions, or indeed any other life changing illnesses and diseases? The Daily Mail’s seemingly unhelpful comments, and those of Baroness Altmann, ignore the crucial point that ALL individuals who meet the eligibility criteria for NHS Continuing Healthcare funding – including dementia and cancer sufferers – are entitled to this FREE package of funded care if they have a primary health need.

Therefore, before finances are ever discussed as to how an individual will fund their (dementia) care, they should first undergo an NHS Continuing Healthcare assessment to determine whether they have a primary healthcare need. If successful, NHS Continuing Healthcare is a FREE package of care that is provided by the NHS to pay for an individual’s care needs and accommodation – ALL of it – and it is not means-tested. If not successful, only then should they be considered for Local Authority funding which is means-tested. If they have capital or assets in excess of £23,350, then they will have to self-fund and pay for their care from private means – which, as we know, may unfortunately involve selling their home to pay for care.

For further reading, look at our blogs:

http://caretobedifferent.co.uk/will-you-be-self-funding/

https://caretobedifferent.co.uk/bbc-drama-care-shines-a-spotlight-on-nhs-continuing-healthcare/

What contribution do I have to make towards my care costs, and when?

We applaud the Daily Mail’s initiative in taking up their campaign to support dementia sufferers. Unfortunately, this was undoubtedly a missed opportunity to educate its readers about CHC as well – which should be the first port of call before any discussion over funding care takes place!

Linking Dementia and cancer sufferers, and putting them into different funding categories – one free and one paid for – is sensationalist reporting, and frankly wrong. For our readers who have had to endure lengthy battles fighting the NHS over many years to secure CHC Funding for a spouse, child or other relative, these type of misleading comments show a lack of knowledge and understanding of the NHS care funding system in this country.

Paying for care is not about the ‘label’ or diagnosis given to a particular medical condition, but should be based on the totality of the individual’s overall healthcare needs. That is the critical factor as to whether or not an individual is entitled to free CHC care paid for the NHS, or has to go down the Local Authority route for means-tested care, or even self-fund.

It is therefore hugely disappointing that NHS Continuing Healthcare isn’t even featured in any of the 8 pages, despite the Daily Mail’s campaign to end dementia care bills.  It is so fundamental that not to even mention it as an alternative means of funding care if the criteria are met, is staggering. We want to encourage the Daily Mail to campaign for CHC Funding, too.

The starting point for dementia sufferers (Alzheimer’s or others with cognitive impairment) is to consider whether they have a ‘primary health need’, in which case individuals suffering with Dementia, may be entitled to free fully-funded care from the NHS if they meet the eligibility criteria for NHS Continuing Healthcare Funding. If they do, then all discussion about paying for their care and having to sell their home is completely redundant. Their healthcare needs will be met by the NHS. Yet, this is not mentioned by the Daily Mail. So rather than attacking social care reforms, perhaps the Paper should join our campaign to raise awareness for their readers of CHC Funding and bolster their budgets to help those in need as well.

By focusing exclusively on social care (Local Authority) funding, perhaps, the Daily Mail correspondents have never heard of NHS Continuing Healthcare, or else haven’t really understood what this complex funding process is all about, or how you go about seeking CHC Funding.

No wonder NHS Continuing Healthcare Funding is often described as the “NHS’s best kept secret.”

Reminder: The starting point for ALL individuals who have a primary healthcare need, should be to assess their eligibility for CHC first, and not rush down the route of getting social care and selling their home to pay for it.

By concentrating purely on dementia as a social care need, it appears that the Daily Mail have not grasped that this funding is not the starting point. We wonder:

• How many of the Daily Mail readers have heard of NHS Continuing Healthcare Funding?
• How many of their readers have been assessed for NHS Continuing Healthcare Funding?
• How many have been assessed, but rejected for NHS Continuing Healthcare Funding due to flawed or incorrect assessments?
• How many readers have had to sell their home to self-fund their care when it should have been fully-funded FREE by the NHS if an assessment had taken place, or fairly and robustly carried out?

At the end of the day, it’s all about money and who pays! The NHS and each Local Authority will be keen to protect their budgets and try and get the other organisation to pay, or if all fails, to get the individual to fund their care!

Note: It is another common misconception that the mere diagnosis, such as ‘Dementia’, is a guaranteed ‘win’ entitling an individual to CHC Funding.  Having this disease is just one factor that has to be considered when looking at the totality of the individual’s healthcare needs – in conjunction with the 4 key indicators (or characteristics) ie the Nature, Intensity, Complexity, and Unpredictability, and whether those needs build a picture of care that is more than what the Local Authority Social Services are legally obliged to provide.

For further information, read our blogs:

What kind of care needs count in NHS Continuing Healthcare?

Understanding the four key indicators

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

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

In summary:

By only referring to social care needs, the Daily Mail completely ignores the overriding issue that the individual may have been entitled to NHS Continuing Healthcare at the very outset, avoiding the need to sell their home, eat into private savings and go down the means-tested route of a Local Authority assessment for social care.

It’s not just a question of having more funds to boost Local Authority fees either, to pay for dementia care, but also boosting the NHS budgets to meet their primary obligations under the National Framework for NHS Continuing Healthcare (revised 2018). That should be the starting point for assessing whether an individual is entitled to a fully-funded free package for all their healthcare needs.

Whilst we, and many others, will be grateful to the Daily Mail for highlighting the issue of dementia and families having to sell their homes to pay for social care needs, this was a real missed opportunity to expand the conversation, and deal with the national scandal of NHS Continuing Healthcare Funding at the same time.  The fact that it is only mentioned in passing, reaffirms that not much is known in the public domain about the availability of this free funding, and much more needs to be done to prevent others from selling their family homes to pay for their relative’s care.

The Victoria Derbyshire Show on 11^th June 2019 was an excellent exposé on the NHS failings to deliver CHC to those most in need and who had to spend hundreds of thousands of pounds unnecessarily on their relative’ care, when it should have been funded in full by the NHS.

Read our blog: Exposed: NHS Continuing Healthcare makes headline BBC News

New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…

The general public (and many healthcare professionals) have very little awareness of NHS Continuing Healthcare Funding. We want to encourage all our readers to spread the word about CHC. Go and educate your GP, MP, family and friends, as that is the starting point for funding care, not social services.

Write to the Daily Mail (at dementiacare@dailymail.co.uk or letters@dailymail.co.uk) and encourage them to lift the lid on CHC funding, widen their campaign and educate the public about CHC.