/ Health

We must be told about crucial changes to NHS care funding

If you’re struggling to pay healthcare costs for a seriously ill relative, the NHS can offer funding to help. However, if you didn’t know about this funding and need to apply retrospectively, you could soon lose out.

The NHS offers funding to some people who have ongoing healthcare needs – people who are seriously ill and need daily care, for example.

People who are eligible have their full healthcare costs funded by the NHS – whether they live in their own home or in a care home, and whatever their financial situation. At a possible £1,000 a week, it’s a lifechanging sum of money.

Last year, we exposed the huge nationwide variations in whether the NHS pays the full cost for people with the highest, most complex needs. But there’s a further twist in the tale…

Funding can be hard to come by

Back then, David Bury told us how his family was struggling to retrospectively get more than £100,000 for his mum’s care between 2003 and 2006. Five years on, they won the fight. But if they had made the claim after September this year, they may not have been so lucky.

The Department of Health has announced that, from 30 September, it will be closing down claims for care costs incurred between 1 April 2004 and 31 March 2011. This means that people who aren’t told they can claim before this deadline could miss out on thousands of pounds of funding they’re entitled to.

Last year many of you wrote to us about your experiences of trying to access continuing care, and the lack of information was a recurring theme. If they don’t know it exists, people can’t apply for the support they need at the time. In these cases, their only option is to make a ‘retrospective’ application.

Is there enough information?

A month ago the Department of Health sent a memo to primary care trusts (PCTs), telling them to raise awareness of the changes. However, it doesn’t feel like much has changed – have you seen any advertisements explaining these changes in your local area, or on PCT websites?

And – as someone with a friend whose mum gets continuing care funding because of her severe dementia, and had to fight for it as well as cope with a stressful situation – it seems to me that this is a bit like kicking someone when they’re already down.

With PCTs due to be disbanded under NHS reforms, there’s also a worry that more local commissioning could mean the postcode lottery for continuing healthcare will get even worse.

Have you tried to apply for continuing care funding? How do you think the Department of Health could help raise awareness of the changes made to these applications?


Frankly – I have been busy getting rid of my money and possessions (including my house) to avoid being forced to pay for long term care until I am a pauper. Under the present imposed system it is pointless to save anything for the future as it will taken from you to pay for long term care – Something the Welfare State had guaranteed to be free since 1948.

So why should I be forced to pay up to £30,000 a year for my “Free” long term care??

I won’t – I’m giving it away in cash now to those who would have benefited from my “inheritance” as it used to be called. I don’t trust this “government” in any way shape or form. Soon it will be paying to be ill. The only money I will be keeping is the money to pay for illnesses and retirement to kennels for my dogs as this is below the “poverty line” so I can keep it.

The “government” is a disaster for those of us who saved to make our retirement “comfortable” – we are punished for being prudent – what an example for the young!

goldilocks says:
20 April 2012

People need to understand the difference between social care and health care. Post such as that from Richard clearly show there is a long way to go. Getting rid of you assets to avoid paying for care comes under Deprivation of Assets – look it up. Even years later it can apply. If you are in need of social care then why should the taxpayer fund you if you have assets? If you are in need of health care that is the remit of the NHS. Only a court will ultimately decide as the NHS introduced their own rules called the National Framework after losing the Coughlan case – and they don;t even stick to this. I have been right through it on behalf of a relative including all the appeal stages and at every stage the law is ignored in favour of the NHS criteria. Only a Court will ultimately give you justice – if you can afford to go there. And finally – a word of warning – never ever ever give money to anyone offering to be your advocate – especially if you have never met them.

michael says:
20 April 2012

goldilocks wrote

why should the taxpayer fund you if you have assets
Because, goldielocks he has paid his contributions and taxes all his working life, Why should he pay again, Where is the legislation that orders you to buy a house and save for long term care?? There is no legislation,

Wealthy people are just as entitled to fully funded long term continuing care as is a pauper it was stated by the high court judge in the alison booker case, Health care is the responsibility of the N.H.S and Ms Booker can do what she likes with her money


Of course we should be told about forthcoming changes in NHS funding of care, but realistic long term plans are needed to help the elderly and their families plan for old age. It is vital that the rules are clear and easy to understand.

greenflamingo says:
17 April 2012

We have been trying since 2008 to get funding for my deceased FIL. He was doubly incontinent, dying from COPD and Pulmonary fibrosis, was totally bed bound and couldnt even reposition himself in bed or move, weighed less than 5 1/2 stone and his weight continued to decrease during the 3 years he was in the nursing home. We have been told continuously by our PCT that he was “primarily social needs” – god help anyone who isnt tenacious enough or strong to fight these people. Waiting now for a second Independent Review Panel hearing. The system is attrocious and designed to put people off appealing. It is not there to help.

Belinda says:
24 May 2012

I can totally associate with the problems you describe, having gone through very similar trauma resulting in the loss of a dear parent in 2006. I have only just heard about applying for Care Home refunds which I believe should have been funded by my late parents’ PCT. I am in possession of the Care Home records. Could you advise how I go about making a claim directly to the NHS without the necessity of employing one of the many firms now advertising on the internet. I have trawled through the internet myself, been in contact with Age UK (who have in fact been exceptionally helpful), but I would not know where to initiate the claim myself, using the correct documentation. Any suggestions would be most helpful.

Grumps says:
4 July 2012

Message for Belinda, with apologies and empathy to greenflamingo.

I have spent over two years fighting for funding on behalf of my wife, who suffers from Alzheimer’s disease. Sorry to be late with any helpful suggestion, but I’ve only just found out about the 30th September cut-off date for claiming, and landed here during my search for information – which is sorely lacking from the Government’s promulgation department.
My main suggestion to you is to contact the Alzheimer’s Society, who have volunteer helpers that have been through successful claims, and know the ropes. It’s still a lengthy process, but the help, information, and support they offer is invaluable – usually on a one to one basis – and free.
My other suggestion would be to avoid any of the newly-emerging legal firms offering the usual ‘no win, no fee’ service, unless you have someone you trust implicitly who can give you proof of the firm’s credibility – and then only as a last resort.
I’m currently waiting for the SHA to arrange an independent review of my wife’s entitlement, and the Alzheimer’s Society helped me put together such a strong case, exposing the many transgressions from procedures committed by the CHC/PCT, that I’m feeling fairly confident of a positive outcome.
Be strong, Belinda; and don’t give up.
PS: Don’t let them tell you that you have to have Power of Attorney, or a Deputyship from the Court of Protection in order to make a claim on your relative’s behalf. As a relative, you have rights which are clearly stated in all the procedures. Best wishes.

Michael says:
17 April 2012

The N.H.S Has never been honest Re long term continuing care, Since the long term care wards were shut down by Margaret Thatcher, The corruption begun, Alzhimmers/Dementia patients were/ are farmed out to the private sector, Discriminated against for having an UN curable UN treatable disease, If it is known by the authorities that the person/ Persons has assets above a certain level, they are automatically told it is the law you have to pay for your long term care, Despite having a Terminal illness, IT IS NOT THE LAW , Health care is paid for from a lifetime of paying National Insurance contributions also income tax and any other tax that has been slapped upon us

It is written into the Core principles of the 1946 Health act, that health care is free at the point of need, and is based upon a patients health needs AND NOT THE ABILITY TO PAY , There have been several high court cases. that have laid down the law, the high courts have upheld the principle that health care is free at the point of need, in fact a judge passed in the Pam coughlan case on appeal, that any patient with needs the same as OR GREATER than Pam coughlan is entitled to fully funded continuing care paid for by the N,H,S, The test for long term continuing care is Known as the Coughlan Test, But the N.H.S Has ignored this and use their own variations of criteria, In other words they ignore the law to avoid their responsibilities of vulnerable patients young and old alike

If you people out there agree with the sentiments of the N.H.S You are helping them to Rob you at any age, It is not just the elderly that are being forced to pay for long term illness care, it also affects the younger generation, after Acute care in a hospital you are deemed to be fit to leave but need long term care YOU WILL HAVE TO PAY As well, If you stand by and do nothing and allow this to continue the profiteers win

I’m With the above, whatever assets i have they are going where they were meant to go my children and grandchildren, Not some fat cat

Spend it whilst you have the ability to enjoy it

avenger says:
17 April 2012

As others are saying, there are multiple barriers which appear constructed to prevent the law from being followed. NHS Funded Continuing Healthcare is virtually a state secret. People almost always find out about it ‘by accident’ and staff (NHS and SS) appear brainwashed to believe that their own fantastical infrastructure ( a tortuous series of ‘score sheets’ with confusing ‘domains’ and graded levels) supercedes the Coughlan Judgement. In actual fact, the situation is relatively simple: needs comparable to / greater than those of Ms Coughlan are beyond the remit of Social Services. The point to remember here is that Social Services can means-test whilst the NHS cannot. Letters to PCTs invariably meet with gobbledygook replies, (if replied to at all), correspondence is passed from department to department with all the speed of a post office queue, and every attempt is made to make all but the most determined give up. Professor Luke Clemments of Cardiff Law school states in an article that it is ‘..asif ‘Coughlan never happened’. Do not give up. Patients or their relatives must challenge all the inane paperwork – needs are typically down-played or omitted. Go to every meeting, contribute everything you can, research and research this arena, and ensure you have lasting power of attorney set up if appropriate. Remember that you know your relative or friend’s needs better than anyone and take nothing at face value. It can become extremely stressful, but if you decide to involve lawyers, do all you can to ensure that you have selected a specialist. This is not an area for generalist solicitor firms. Begin by downloading the NHS framework guidance to the whole procedure (revised 2010) and study it over and over (available from NHS websites but rarely if ever adhered to by NHS staff). Watch for the smallest of deviations from the ‘book’. Do not let them confuse you with the ‘funded nursing contribution’ – this is not NHS Funded Continuing Healthcare.

If you have read this far, you will have started to understand that it is all an utter disgrace. Please pass on the main message to any it may help.

If I break the law I get punished. If the NHS and Local authorities break the law – who cares! If I have Alzheimers Disease and am told I need 24-hour care; that I have no capacity; am at risk to myself and others but I own a small property – who cares? Certainly not the NHS, they can’t even be bothered to carry out a CHC assessment. They just tell my family that I’m self funding. Eight years on and now deceased, my estate is insolvent as the LA have taken action against the estate to retrieve unpaid care costs; my daughter has had a terrible 8 years fighting for what was my right to NHS CHC as my primary need was clearly a disease – Alzheimers Disease – a mental health illness. I too should have given all of my hard earned money (not that it was alot) to my children before it was too late. I saved for my children, others didn’t – they receive their healthcare needs fully funded. It’s a grave injustice what’s going on. Appeals/Reviews/Independent Reviews/Ombudsman Reviews – they have cost more than it would have cost to do the right thing by me. The Local Authority who took the estate to Court will receive pretty much nothing as their legal costs far exceeded the value of the estate. Absolutely cruel, absolutely crazy, ABSOLUTELY WRONG.
Please can somebody take this seriously and help the many relatives & friends of people in similar situations. Their lives are being ruined/destroyed.
I write this in the name of my Mother.

Gillian says:
25 May 2012

Very true SBD My Mother had vascular demetia, she was very very aggresive she was addmitted to the local community hospital for assesment, they never completed a full assesment of her need’s, in fact they disharged her after only one week initially, this was at Christmas too when no back up support was available for us to turn to. Afetr a difficult week at home we had to have her re-addmitted, again after a week they were all for sending her home again! but I stood my ground with the so called Dr and said she was not coming home she needed to be placed where she could have 24 hr care, his reply was WHO is going to fund this, I was so angry at the lack of compassion and care for my Mum and our safety that I just WE will, Mum was taken initially into a so called residential care home which was reasonably good in the first instance then one member of staff left and there was a rapid decline of care and hygene standards, which I reported to CQC, we transfered Mum to a Nursing home who did the full PCT continuing care assesment which showed Mum was eligable for full conting care funding. Sadly Mum passed away 3 months later, I say sadly it is a great loss to us all as a family but Mum left us 2 yrs befre she passed away, the dementia took Mum from us and in some way’s for Mum and us it was a blessing that she was no longer suffering this awful cruel illness, may she rest in peace, I know many others who have loved one’s with this illness will feel the same and my heart goes out to you, having to fight the PCT for funding just add’s weight to your already difficult burden of sadness and struggle. more compassion and understanding should be shown and the process much simpler. Gillian

Jennifer says:
17 April 2012

‘Kicking someone when they’re already down’ is exactly what’s been going on for years especially with dementia patients. Nobody ever tells you that funded NHS continuing healthcare even exists, so how on earth are people to be expected to claim before September? I’ve not seen one single full-page advert in the press announcing this major deadline. Not one single poster in our GP surgery or local hospital either. Hardly surprising, because the NHS doesn’t want people to know about it, just as the NHS has never wanted people to know about the existence of continuing healthcare funding.

People who develop dementia are often forced into residential care by the social services especially once the social worker has established that the person owns their own home. The fatcat care home owners sometimes provide the most abysmal standard of care and charge a small fortune for it, while paying the minimum wage and no job security to their staff. They don’t care where their money comes from – as long as it gets to their bank account.

The dementia patient can go fairly rapidly from being mobile and able to care for him/herself through to immobile, bedridden, unable to eat unaided, to drink unaided or speak or make any decisions about life. Is that a lifestyle choice requiring ‘personal care’ only? NO. It’s caused by a disease that destroys the brain. Nothing to do with the normal process of ageing.

It’s nothing to do with planning for old age. If you develop a life-destroying disease at any age you should receive all the care that you need fully funded by the NHS. That’s what it is supposed to provide. That’s what taxation and National Insurance contributions have always been for. Successive governments have used the money for things they care about – without listening to the people who pay throughout their lifetime. Unlike the really really rich who avoid paying any tax at all, we have learned recently.

Nobody of any age chooses to be so ill that they need care in a care home. Anybody who’s ever had anything to do with care homes will know that it’s not a lifestyle choice but a situation forced on you because of your health needs.

If this was happening to 40 year-old people, there would be uproar. Because it happens in the main at present to the older generation, nobody cares. They can’t fight for their rights, so they’re an easy target. Shame on the NHS, and PCTs and Social Services. Shame on all MPs who allow this to continue. Shame on this once Great Britain. They’re all in it together.

Charles McLuckie says:
17 April 2012

I am currently fighting on my 92 year old mother’s behalf ( I have POA over her affairs). She was discharged 2 years ago from a hospital in Scotland direct to a care home as she had been diagnosed with Vascular Dementia. The hospital never mentioned CHC nor carried out any assessment and we were passed to the local authority who carried out a means test resulting in us having to fund much of her care home costs.
For reference, in Scotland the guidelines for CHC are contained in the document CEL 6 2008 issued by the Scottish Government. From the evidence I have accumulated so far the NHS have failed to follow any of these guidelines.

While the Government are making a mint out of Inheritance Tax & NHS doesn’t treat chronic conditions it can’t cure such as Alzheimers ] it can’t cure it is not suprising the LAs especially the London ones are deliberately ignoring the Chronically Sick & Disabled Act 1970 regarding Access.to social services, disabled parking & ethical treatment? Otherwise why are they still making policies from dubious surveys & statistics & allowing accountants to dictate looking after their own interest fraudulently hoodwinking through criteria with no discretion .Health is not an exact science. It is as if the criminals are in charge as elected representatives collude .This can be seen in the attitude to the Military too. Isn’t it about time the ethical with integrity took charge?

John F says:
18 April 2012

I am fighting a firm of so-called expert healthcare lawyers who regularly take cases on, using an expert witness who uses the banding or criteria methods as his (and this applies to the lawyers who have hired him) way of measuring whether or not someone can or cannot successfully expect to gain fully funded care.

The Coughlan decision ( and similar legal decisions) does not accept banding/criteria. This has been repeated time and time again, but this firm, and too many like them, take the banding path. And then charge exorbitant fees.

Pam Coughlan herself has stated that if such “criteria” had been applied to her, her case would not have been successful. (And by the way, too many judges at County Court level also appear to either ignore the law or are totally ignorant of its consequences).

However, Pam Coughlan was lucky enough to have a lawyer who knew exactly what the law was about. And this solicitor appears to be the only one.

Stephen Squires says:
18 April 2012

Since the 1946 National Health Service act became law every resident British citizen has been entitled to receive NHS care ‘free at the point of need regardless of the ability to pay’. The NHS avoid paying for long term care, primarily of the elderly, by shunting their care costs on to social services and thus via. mis-application of the 1948 National Assistance act on to patients themselves. NHS care is not ‘free’ of course as we have already paid for it via. a lifetime of punitive taxation. Patients requiring long term care are thus compelled to pay twice and to ensure that they do over 70,000 homes are confiscated every year. There is thus a conspiracy to defraud between the NHS/DoH and social services resulting in deprivation of a patients statutory rights. The NHS cannot avoid their legal responsibilities simply by refusing to address them! Continuing care patients and their families are fighting back and forcing the NHS to refund care costs – plus interest -which has been unlawfully exacted. Having forced the NHS to reimburse all my late father’s care costs I established the ‘NHS Continuing Care Campaign’ to assist all those who have been similarly defrauded by the NHS.

18 April 2012

Dear Mr.Squires,I have tried to find your web page to see if I can assist in any way but the link is not working plkease let me know how to get in touch.
Kind Regards,
Mrs Daughne Taylor

18 April 2012

All of the cases highlighted here show just how devistating,degrading and demoralising it can be to have to ‘fight’ for something that is a patients ‘right’,we fought for four years to get my dear father NHS continuing care he had Leui Body dementia and regular TIA’s (cerebal strokes) caused by the dementia and each one rendered him more and more frail, he was doubly incontinent, unable to walk and permanently in a wheelchair,he had to be hoist lifted which caused him great pain and he was unable to feed or wash himself,for the last two years of his life he was in a care home which we, in the beginning self funded at a huge expense but we desperately wanted dad to have the best care we could afford, we were told by one social service person that we would definately not qualify for CHC I asked what was the criteria and she said in a cold calculating tone’ you practicaly have to be dead to get it! It was by pure chance that we saw the article about Pam Coughlin and contacted the same solicitor who thankfully took up our case,we had to go through humiliating meetings where dad had to be’ quized’ about how he was (bearing in mind he didn’t know where he was or could hold any sort of conversation at all let alone answer their questions) we luckily had a very good social services care worker who saw how critical dad was and added her fight to our claim which did help but it took us until just before dad died to get them to accept that he did qualify but only for the last year of his life as they claimed the first year was ‘social’ not health needs ( so dementia and strokes don’t count as medical then?) Now the Government has yet again slipped a bill in under the radar that CHC claims cannot be retrospective so therfore many many frail folk and their families will lose out on their rights again,I thought -wrongly it seems that the Govt were at last being sensitive to our elderly folk-how nieve of me! PLEASE someone up there in the ivory towers especially the Minister for Health listen for once to the folk who put you as part of this Government in power they need to be taken seriously not dismissed in the hope that they will fade away because they are a seen as a nuisance, our elderly folk only ask for their dignity and pride to be kept in tact nothing else that isn’t their right to have and just think on, old age comes to us all eventually but to some more comfortable than others but it is the others that I am concerned for and if I can help just one more person to have what is rightfully theirs then our fight for dad will not have been in vain.

Joanna – are you perhaps in a position where you could raise the profile of these issues so that something positive can be done to seriously help ?
SBD – stands for Struggling But Determined

Helen says:
18 April 2012

My mother has been in a nursing home for six years, she is deemed by social services to have advanced dementia. Yet she has been denied continuing care funding, even though she is doubly incontinent, has no mobility, needs assistance with every bodily function including eating, drinking etc and has ongoing problems associated with earlier strokes. She also has serious heart problems.
It’s scandalous that someone who has paid into the system all their working lives, as my father did before her, now has to pay £925 per week (yes per week) for her care when she is basically ill enough to be in hospital. BTW, it’s pointless anyone saying this is a conspiracy to defraud, as in the misleading website mentioned above, it’s all perfectly legal.

Michael says:
18 April 2012

[quote]BTW, it’s pointless anyone saying this is a conspiracy to defraud, as in the misleading website mentioned above, it’s all perfectly legal.[/quote]

No, Helen it is not perfectly legal, the elderly are being defrauded, Yes there is a lot of misleading information out there none more so than from the N.H.S & Social Services They know that they are Acting unlawfully, But get away with it, But get them into court the story is different


avenger says:
18 April 2012

Helen – Social Services cannot make medical diagnoses – they cannot possibly state that someone is or isn’t suffering from ‘advanced dementia’ .
Perhaps even more importantly, readers need to know that this state of affairs is most certainly NOT legal. Please refer to the Coughlan judgement. This is the line in the sand which clearly delineates the level of need beyond which Social Services cannot count as lying within their remit. Please check your facts before posting messages which are most unhelpful especially since those in power are already misinforming on an impressive scale.

Jennifer says:
18 April 2012

I think we have to recognise that social services are often those in the frontiine and passing on comments and reasonings that they’ve received from the multi-disciplinary team, which is often called the mental health care of older people team, where the consultant sits. Depends where you live, but social services mostly now work in collaboration with the consultants and other members of that multidisciplinary team. CPNs, OTs, Physio, etc. We never met a consultant for a year or more in our early dementia life, the GP arranged for all the scans and tests, in collaboration with ‘the NHS’ and with that multi-disciplinary team, which included a social worker or two. Nobody ever told us about continuing healthcare funding.

It’s possible that Helen’s social worker was just passing on the information that she or he’d been given by the consultant. There is no real and readable definition of what can be provided by social services – lawfully. There’s no definition of ‘social care’ – it’s an artificial distinction that has come to be the norm. A generation has grown to accept and to demand often that care should be paid for by the individual needing care. That younger generation doesn’t give a toss about the fact that other people don’t agree with that view. Our government is made up of multi-millionaires – who will never even need to call upon an NHS dentist for toothache. What do they care?

Coughlan came before the National Framework for Continuing Healthcare (or whatever it’s called now), so the National Framework is lawful and also legal – it came about as a result of Coughlan and various Ombudsman judgments.

I’m not saying it works – it clearly doesn’t work well at all.

There’s a difference between something being ‘legal’ and being ‘lawful’.

It’s possible that not one single one of Pam Coughlan’s “needs” matches one single need of someone else who may be equally deserving and in need of healthcare. How can we possibly compare the needs – physical and mental and whatever else – of one human being with another? How is that line delineated ‘on paper’? It is all down to clinical and personal judgement – and also to the ignorance of those involved more often than not. It’s a box-ticking exercise, that’s all. If you get a good box-ticker you’re ok; if you get a lousy box-ticker you’re doomed.

The assessment system is kept behind closed doors, and people are not made aware of its existence. It’s misunderstood by care home staff, by social workers, by GPs, by doctors in hospital, by nurses etc etc. Many people don’t even know that they can be involved, can receive copies of care/hospital notes, assessments and so on. If you don’t know, you can’t ask and you can’t be involved.

The appeal system is rubbish, and again kept behind closed doors. On it goes, year after year after year.

Helen, don’t be put off posting about your own experience. We all learn from each other, so your point of view is just as valid as anyone else’s here, and if mine’s rubbish you can just dump it. It’s a waste of time and energy to harp on about conspiracy theories to defraud, I agree with you there. Far better to work with the system in place and defeat that system, because unless you can take the NHS to court and challenge the ‘lawfulness’ and the ‘legality’ of the system in place, you won’t get very far.

Helen says:
19 April 2012

Avenger, I think your tone is aggressive and rude. I am outlining what I found in social services notes as a matter of fact.

I’m fed up with reading on business websites how this is all some illegal conspiracy. Nobody has been able to take any class action or any other legal action to prove that to be the case. A lot of people are making money out of people like us with their advocacy services etc. if you think it’s illegal consult a solicitor and get some proper legal advice. Then do something about it.

Michael says:
18 April 2012

Jennifer wrote

It’s a waste of time and energy to harp on about conspiracy theories to defraud
You are entitled to your opinion, But it is true Social Services And P.C.T’s work together as partners
and they do conspire with each other using deliberate tactics internal tools to deny A/D Sufferers not only do they deliberately deny you the knowledge of the existence of fully funded continuing care, Between them they deliberately down grade the domain scores of patients, thus the N.H.S Avoid their responsibilities to fully fund, I Have won our mothers case for FF/CC

I also have evidence of conspiracy The head of our local P.C.T Instructing the Social Worker to make sure our mothers treatment is complete, And that she must be seen to be stable Before being presented to panel, the document that I have to prove this was found in the Access to Social Services Records they forgot to redact it. So jennifer Conspiracy to defraud is rife within the authorities


avenger says:
18 April 2012

The National Framework must be applied with due respect to the Coughlan judgement in order to be lawful.

May I just add my sympathies to all those contributing here, whether or not our ‘technical’ views agree. Having a family member or friend in need of such care, and being up against such heartless denial is no fun.

Helkat says:
18 April 2012

We were told absolutely nothing about CHC when my (now deceased) father had to be admitted to full time care, once his illness had progressed to the stage where he was unmaneageable in his own home. This was just over 11 years ago, and very little has changed in that time – relatives are still not being made aware of their rights by the NHS. We too had a nine year fight,some have taken longer, but he was denied CHC by the various panels of PCT/SHA members, none of whom had ever seen him. Some win, many lose. We would have dearly loved to have taken the NHS to court, but the cost for ordinary folk is far too prohibitive – and don’t they know it! It’s a national scandal, an absolute disgrace. Successive governments and the NHS should be eternally ashamed.

Stephen Squires says:
19 April 2012

I have known Pam Coughlan for several years and she is a contributor to my message forum mentioned above. She has herself confirmed that if the NHS ‘eligibility criteria’ for fully funded NHS continuing care were applied to HER she would fail to qualify. Yet the High Court and the Court of Appeal both ruled that Miss. Coughlan was entitled to NHS care ‘free at the point of need regardless of the ability to pay’. In other words they simply applied the National Health Service act. As the Court CANNOT be ‘unlawfu’ then their criteria must be! The legal position is simple in that the existance of ‘criteria’ may well be lawful but if its APPLICATION produces an unlawful result then that is of itself most certainly unlawful. The NHS use ‘nurse assessors’ to apply the criteria to determine the right to receive NHS continuing care – but as this is a statutory right enshrined in the Health act and is thus a matter of law not medical opinion and questions of law cannot be arbitrated by clinicians to deprive a citizen of their statutory rights. These ‘assessors’ are therefore open to legal challenge and could possibly be held liable for exemplary damages. If your relative is refused NHS care on the opinion of clinicians then ensure that they are made fully aware of the consequences (advise them in writing) If they are made thus aware then they cannot rely on the NHS to accept vicarious liability for their unlawful actions and they may reconsider their position! When I mention all this at review panels I attend as an advocate for claimants the panel refuse to respond, invariably stating “we are not empowered to consider questions of law!!” “We vos only obeying z’orders” didn’t wash at Nuremburg and I doubt that it would be accepted by a British court! Steve.

Jennifer says:
19 April 2012

[This comment has been removed for being potentially defamatory. Thanks, mods.]

Hello Jennifer, please make sure your comments are about the topic at hand and not about other commenters. Read our commenting guidelines for more: https://conversation.which.co.uk/commenting-guidelines Thanks.

Helen says:
20 April 2012

[This comment has been removed for being potentially defamatory. Thanks, mods.]

Hello Helen, we don’t allow advertising on Which? Conversation – but if a website is genuinely useful and relevant to the topic at hand we do allow them to be posted. However, due to the controversy surrounding this particular site we have removed the link from the comments. Thanks.

Hello Jennifer and Helen, I regret to say that we have had to take down some of your comments as, legally, they had defamatory statements in them. I’m sorry for that.

However, I must point out that although we do allow links to external websites, Which? does not necessarily endorse the services that are posted in the comments section and suggest everyone takes due diligence with using any service that another commenter might support. Thanks, Patrick.

Jennifer says:
20 April 2012

I’m sorry too, Patrick, even though I may be able to understand where you are coming from and the position you may need to protect.

As I said before, the comments I made were all true and verifiable, so were ‘fair comment’ and not one of my comments was intentionally false, which is how I understand defamatory.

Perhaps it would be better if you removed in their entirety the posts that you consider to be ‘potentially’ defamatory, rather than leaving a bald skeleton for the crows to pick over.

Would you also consider removing the potentially defamatory comments about a conspiracy to defraud between the NHS/DoH and social services? This kind of comment is perhaps equally problematic even though it mentions no names of individuals, and encouraging such comment is causing many people enormous problems, Freedom of speech is, I guess, one of the most important freedoms we have. As long as it is a freedom available to all.

Thank you.