/ 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?

Michael says:
20 April 2012

Hi, Jennifer

Sorry you feel that way about the conspiracy bit, but as i said i have EVIDENCE and willing to provide such evidence to prove what i have said, It made the head of our P.C.T Run for cover, and pay UP, I also have damming evidence of our local P.A.L.S Conspirering with N.H.S Staff to hang fabricated accusations against me, They did not bargain on a Whistle blower amongs them who provided me with internal documents to show what was going on Within, hence all fabricated accusations against me were DROPPED

Conspiracy, Fraud, Intimidation, Fabricated Fccusations are rife within the authorities, When you stand up to them

just a ittle info for you another family have won back care home fees to the tune of £100,000.000, Due to maladministration and the fraud that goes with it, I hope that this win will help you to keep faith in your endevours to defeat the corrupted



P.S If the truth is defamative then do what the corrupted do Remove it

20 April 2012

It is sad to see that emotions are taking ove,r however I agree that it is difficult not to get emotional about ones elderly folk when you are in the thick of caring for them-been there and had the pain,so I sympathise with everyone in this predicament however what the article was trying to point out is that every patient needing continuing healthcare has a right and that is what you must keep in the forfront of your mind you are not asking for anything that you shouldn’t have band you must keep this right there through all the battles you will go through to get justice but don’t try it alone the system will break you,use the best possible legal firm you can go on peoples recommendations and then let them fight your battle for you,the NHS don’t like legal interventions at any cost but you will get a more meaningfull hearing if you do, but even then question everything especially when assessments are done these are endless pages and pages of questions but it is the interpretation of the answers that is importan,t what you say about your loved one will probably be completely different to what will be reported and if you don’t agree with anything reported then say so and make sure the assessment is done whilst you are present remember the vulnerable patient can’t answer for themselves but believe me this ‘trick’ is sometimes used, always keep copies of everything connected with your relatives claim and if they are in a care home or a hospital ask for copies of their care plan regularly, remember this illness progresses at an alarming rate,and please remember the person suffering from this dreadful illness has no idea what is happening to them or their families but they need their PRIDE AND DIGNITY UPHELD at all costs and you need your sanity kept in tact if you are to get what is rightfully theirs.I hope this helps bring it back to being a constructive discussion and helps all those in need of support.

20 April 2012

May I also point out that the article is trying to help those folk who don’t know anything about the fact that they can claim and is urging those who need it to apply before the deadline of SEPTEMBER this year so you need to get the ball rolling as soon as possible to stand any chance of a fair outcome.

Jennifer says:
20 April 2012

Yes, Daughne, you’re right – the main message was about retrospective claims and also to ask ‘Is there enough information?’ about the changes in deadlines about to descend, and also asking how the DoH could help raise awareness of the changes being made to deadlines.

As far as I can see, ‘wavechange’, then me, then you were the only people to respond directly to the original message. I admit I was subsequently diverted by ‘other issues’ as well, and I have apologised for that.

The sad stories of other struggles came because people latched on, quite rightly, to the hope that Which? might just be able to raise the profile (as commenter SBD asked above) of the overriding problems with applying for and achieving funded NHS Continuing Healthcare in the first place. Let alone retrospective claims which will become a thing of the past unless these deadlines are publicised widely.

As it says at the start of this page, ‘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.’

It’s natural to comment on previous comments, of course, and we’ve all got out own experiences of care and caring. The fact that people who will not be affected by these recently introduced deadlines made such heavy comments demonstrates the importance of the issues involved.

I only hope that Which? will be able to conduct a full and comprehensive investigation into the ‘nature, complexity, intensity and unpredictability’ of the whole NHS Continuing Healthcare process. Does that sound familiar?????

With particular reference to why it is that people with the crippling disease of dementia are discriminated against when it comes to fully funded NHS continuing healthcare. Dementia and dementia-care are my personal passions, and that’s not to say that I don’t acknowledge the health needs of others; just that I know more about dementia care than I know of other care. The quality of care comes first in all my considerations. That may be why I don’t waste my energy on conspiracy theories because, in my opinion, they deplete energies rather than enhance energies.

Bill Brennan says:
20 April 2012

I agree with Daughne Which? are trying to raise awareness of the deadline as the NHS are clearly not. I’ve just seen my local BBC South East tonight and ITV Meridian which featured the case which was in the Argus posted by Michael – this was about two families who have battled for years to get what they are entitled to. These successful stories bring families hope that if you battle and battle you will get there in the end.

I was alarmed to hear that despite the local NHS saying they have been informing the public about the deadline, the Chief Exec of Age UK East Sussex didn’t know anything about it. This just shows that the NHS have no intention of informing the public if such a key organisation is not aware of such an important announcement. It has now been over a month since the announcement and the clock is ticking….

I can also see that the NHS told the Argus in the Witt case that the system is straightforward and easily accessible. What a joke!This forum and the Witt story (who had numerous appeals) show this is certainly not the case. I suspect they are angry with the well known solicitors (who are also refered to in the Which article) for raising awareness of the deadline and the truth about their system.

I can see that the Witt family were in the Daily Mail in 2010 http://www.dailymail.co.uk/money/article-1254996/The-Great-Betrayal.html which proves our point.

I think we all need to make sure that the NHS don’t get away with it.

Lionel says:
21 April 2012

I agree with Bill. We all need to make sure the NHS doesn’t get away with this deadline and that this issue isn’t swept under the carpet. The issue of NHS Continuing Care is like a big secret – not many people know about it so they can’t ask for it. This is obviously in the NHS’ favour.

I only found out about it after watching The One Show which showed a man’s family who also suffered with dementia fighting for NHS full funding. I must be honest I was at that time slightly naive as I thought if my mum was suppose to have it, the home, social services or NHS would have told me. How wrong was I. I asked for an assessment and the PCT told me that mum, who suffers with dementia, was not eligible. There was so much paperwork and this news was so upsetting as mum is like a lot of the cases I had read who had got funding. She can’t talk, walk, see and is totally unable to do anything for herself. She is fed nutrition through a tube to her stomach and also suffers with diabetes. She like the stories I have read here is very very ill.

The system is very complicated and the PCTs put so many obstacles in your way. How on earth could they say my mum had social needs. Without the care she has in the home, she would be dead.

I cannot believe the arrogance of NHS Sussex and Downs PCT in the article in the Argus above. Why can’t they show compassion and simply say sorry to the family. The system is not straightforward. I and other families have had no choice but to instruct solicitors and in my case to remove the emotional stress of fighting such an awful system. I am not usually a fan of solicitors but in my case I have to thank them for the help they have given me in my case. Yes there are advocates in charitable organisations to help, but they too do not have a huge amount of time and resources to help as it is so time consuming.

However there must be caution when looking for someone to help you. When I first looked for a solicitor I didn’t want to instruct the well known solicitor who has helped the Witt family as I’m in Cambridge and they are in Wales but I did in the end. I went to a local solicitor, however it was clear they didn’t really know what they were doing and asked social services for an assessment! There are also a lot of companies out there who claim to be ‘experts’ in this area. However most are either claim or financial companies who have little experience. Some even imply they have won cases which have been in the press – but they have not and with a bit of research it is clear which firm have. So please if you are looking to instruct someone to act on your behalf ask them how many cases have they won etc. Do your research.

Thank you Which? for raising awareness as its clear the NHS have not and will not. Mum is now receiving funding after 3 appeals and we are now fighting retrospectively.

Until Thatcher (Oh how I hate her!) banned geriatric wards – it was simple – My mother spent 12 years in a NHS ward where she had friends and carers – all for free. 12 years at £30.000 a year equals £360.000 at present day prices – which is the price of a house plus savings – My father lost the use of his legs 3 years before he died – he again had free care in hospital until he died – though he wasn’t happy as he had been an active man..

As I have no savings or house – as I’ve already spent it – I will go into care as a pauper. And happy – I paid for the care – I will get it. There is no paper trail – I distributed the cash without receipts.

Lionel says:
22 April 2012

That’s right Richard. Because the NHS has closed only a handful of long term hospital beds the only choice is for the sick elderly to move into private nursing homes. It is therefore easy for the NHS to deny responsibility. It’s so wrong. When mum had a stroke she was admitted to hospital but when it was clear that she was not going to medically improve we were told she had to go into a care home as she needed 24 hour nursing care. If we were in the 80’s she would have stayed in a long term hospital bed paid for by the NHS.

It makes me so angry to think she is so so ill, worked all her life and the NHS are denying what she has always been entitled to.

Michael says:
22 April 2012

For those of you who believe there is no conspiracy to defraud, Why is it that the N.H.S Has not as yet given full publicity to this latest ploy. To raise awareness of the changes to claims

Have you been notified directly of the changes, All P.C.T’s were given guidance to make people aware, but they are as usual sitting on it, All part of the existing conspiracy to deny the public of their rights,

The reason for this of course, is to stop an avalanche of claims being lodged before the dealine

23 April 2012

Michael,I agree with your comments regarding the PCT’s and I suspect it is up to the public to question the Chief Execs as to why there has been no report about thees changes it can be done through the Freedom of Information route but again a lot of people don’t know how to access this,there must be a way that the message can be got across and quickly so many folk are going to lose out and also find it even harder to claim in the first place so any idea’s????

I have forwarded a link to these comments to my MP, Jacob Rees Mogg and would suggest that all interested parties do similarly to their own MPs.
Enough is enough!

Sally Grey says:
24 April 2012

Excellent comments and commentary on the whole. It is both typiacal and upsetting that this deadline (sic) is another NHS top secret. My own experience of trying to obtain CHC funding for my relative was a realtively short but shocking time. I was appalled at the levels of incomptence and deceit that abound in this process. Some of it is habit and ignorance – particualrly on the part of the Social Services who seemingly expect to field the deserving cases the NHS shunt across to them and which all too often end up self funding; entirely unlawful. Once shown what is going on they soon see where they have been spending unnecessarily, and are now more vigilant in taking on cases beyond their remit, I cannot recommend highly enough the excellent factsheets produced by AgeUK on this topic and on discharge from hospital to care and intermediate care; they really help and inform and were vital in our case where we used the National Framework, best practice documents and statute in the way they were designed to be used – for the benefit of the patient and not for the convenience of the NHS or SS.

Excellent also are well informed and current forums which give support and share research with others at the time when it is most needed.

..... says:
25 April 2012

The battle to obtain CHC funding is unfortunately a recurring nightmare for some and has to be fought annually when the funding is ‘reviewed’.

I had to fight for 2 years to obtain my mother’s funding which was eventually granted following the introduction of the new ‘framework’. 5 years later it has now been withdrawn by a ‘nurse assessor’ and a ‘social worker’ who is infact an occupational therapist who used to work for the NHS.

Despite not seeing my mother, nor asking for a report from her GP, nor commissioning any other reports from health professionals they decided that she no longer qualifies for funding and withdrew it having failed to follow any of the proper practice guidelines set out by the DofH.

There is no doubt in my mind that SS and the PCT in this area are working in concert to withdraw funding from previous recipients. SS knew that my mother would be self funding if CHC was withdrawn. My mother’s ‘review’ followed none of the good practice guidelines set out by the DofH and the ‘panel’ just rubber stamped it.

In Steve’s post above he says that he has found it useful to warn them that they can be personally liable for their actions. In my view these people are also not acting in accordance with the code of conduct and standards that they should be upholding as profesionals and I am considering reporting the nurses who have carried out my mother’s assessment to their professional body – The Nursing and Midwifery Council.

The appeal process is also a long, drawn out charade designed to frustrate those who attempt to appeal the decision. At present in my mother’s case the PCT are trying to avoid providing copies of the ‘evidence’ they used to withdraw her funding. That is not surprising I suppose because they used very little proper medical information to inform their decision and failed to include information that would have helped her cause. It is left to the relatives of these chronically sick people, who are not medical professionals, to fight their case.

Notwithstanding that many of the decisions on funding do not conform with the Cooglan judgement, these nurse assessors are also repeatedly failing to act in accordance with the code of conduct and standards that they should be upholding as professionals. I am considering reporting the nurses who have carried out my mother’s assessment to their professional body – The Nursing and Midwifery Council.

Those entitled to CHC funding are so poorly, often both physically and mentally, that they are completely incapable of understanding or fighting for their rights. In the broadest definition of the term, what is going on is rape of the long term sick and disabled.

Daughne says:
25 April 2012

Please don’t give up your fight I know how hard it can be but always remember it is the patients right to have their care needs met and now they are at their most vulnerable .you might lose the battle but you can win the war, if I can help in any way please get in touch ,

Stephen Squires says:
1 May 2012

Everything they are doing is not only making a complete shambles of the long term care situation but their ‘eligibility criteria’ and ‘assessments’ specified by the DoH are completely unlawful. They cannot appoint ‘nurse assessors’ to determine the right to NHS funded continuing care because that right is a matter of law, not medical opinion and clinicians cannot arbitrate legal questions any more than a lawyer could march into a hospital and prescribe a patient’s treatment regime! The ONLY lawful ‘criteria’ to determine a patients right to receive NHS care is to be so ill that they need to be in a care home – or anywhere else which provides 24/7 ACCESS to care services. Their actual illness, disability or any treatment they require is immaterial and there is NO lawful demarkation between ‘nursing’ and so-called ‘social’ care: it’s ALL ‘nursing care’ according to Lord Woolf in ‘Coughlan’. The National Health Service act confers on every resident British citizen the right to receive NHS care ‘free at the point of need regardless of the ability to pay’ . This is a statutory right and NOBODY can be deprived of their statutory rights. If a quasi-judicial decision by a clinician results in a patient being deprived of their statutory rights then an action for damages could be brought against all those responsible. Make sure that NHS staff and management are made fully aware of this AND advise the Royal College of Nursing and the Nursing and Midwifery council. Steve.

..... says:
25 April 2012

Sorry for the repetition above!

Lionel says:
26 April 2012

Good to see a national paper has informed the public of the deadline.

Another story of someone who was again denied funding and after a fight has finally reclaimed the fees from the NHS. Well done to Mr Beaman’s family for telling their story and again Hugh James.


Carl Wilkinson says:
27 April 2012

This is opened my eyes quite a bit reading up on this, I found a group on facebook, Free Nursing Care which is a great campaign but also they had linnks to their website where by they help people claim for care fees,

Stephen Squires says:
5 May 2012

Apart from being a deliberately created shambles, NHS continuing care funding is a cynical conspiracy to defraud whereby the NHS shift the cost of funding long term care on to social services. Social services then distort the 1948 National Assistance act and shift the cost on to Council tax payers, where the service user cannot pay and on to patients themselves where they can. This was recognised by the House of Lords who called it ‘cost shunting’ – check this link:

NHS CHC Debate in House of Lord December 06.pdf

This document was circulated to ALL directors of social services and is clear evidence of a conspiracy to defraud. I suggest that the DoH ‘deadline’ will not protect them from a charge of fraud and restitution and damages claims by those who have suffered financial loss through the failure of the NHS to apply the law and safeguard the statutory rights of all those requiring long term health care. Steve.

Flannigan says:
15 June 2012

The comments in the link are five years old but just as relevant today, isn’t it sad nothing’s changed.

Stephen Squires says:
10 May 2012

The link to the ADASS (Association of Directors of Adult Social Services) report on the Lords ‘Cost Shunting’ debate was sent to ALL directors of social services. Obviously they chose to ignore it! Click here:

Flannigan says:
26 May 2012

There is an urgent need for a simple appeal process. The whole system is a shambles. My dad has had the quick assessment three times and each time he comes out with a different score, sometimes he gets A in one category, then another time it is a C. Although his health has declined and all his problems are health related they still say he is not eligible and his needs are social.The PCT refused to give me any details about why he was refused, it has taken two years just to get some info off them. How can a relative appeal if they are not given the reasons the person has been turned down. My dad needs 24 hour supervision and support due to his medical conditions and mental health, he is also awake all night. I care for my dad every single day but I cannot be awake 24/7 so have to employ carers as well. The PCT officers just fudge and delay until you get worn down and give up. They are damaging carers health as a result.
Having spent all my dads savings on care I am now paying £1000 a month of my own money and I am worried sick

Dear Flannigan
I’ve been there believe me (for 6-7 years though). They will wear you down and with the benefit of hindsight my advice is to seek assistance from the only real legal people in the market that have the experience you can trust in. They will be able to go through your Dad’s case and advise you of the merits of taking things further. I’m not able to mention names here unfortunately but there is only one firm I personally would trust. Other than that my advice is to know and understand the National Framework and Decision Support Tool they use, obtain copies of all records from GP, CPN, Social Services, PCT so that you know exactly their written understanding of the situation; then make full notes of every conversation/communication you have with any one of their representatives. If you request information note the date – be aware of the timeframe their procedures indicate they should be back to you with that information; then write formal complaint to the Complaints Department and tell your contact that is what you will do each and every time they mess you around. Believe me you cannot beat them unless you play their game – rules and procedures are there for both them and us – they ignore them but if we do, it’s at our peril.
I hope this helps.

Stephen Squires says:
27 May 2012

Flannigan – you mention ‘I am now paying £1000 a month of my own money ‘ In fact you CANNOT be compelled to pay ANYTHING. The ‘liable relatives’ act has been repealed and in any case it would never have applied to you! You can find answers to all your questions via. the free nursing care forum. Steve.

Flannigan says:
15 June 2012

Sadly if you want to keep someone in their own home and they have run out of money then the relatives have no choice but to pay. This is by hard for small families. Social services only give so much under personalisation budgets. 24/7 care at home costs a lot more than social services will pay. Yet the NHS says someone who needs such a high level of care isn’t eligible for Continuing Care Funding. There is no choice except pay or put my dad in a home, which he doesn’t want. He lost his youth defending this country in a war, now the country doesn’t want to know him.

Anonymous says:
27 May 2012

I’m not sure that Flannigan is talking about paying out his/her own money, or even talking about the liable relatives’ responsibilites, which were abolished in April 2009, or thereabouts.

Flannigan may mean that his/her reatlive is being required to contribute to the costs after the well-known financial assessment. You won’t find all the answers to your questions by following the link to the forum mentioned. It is way out of date and relies on information that is years out of date.

[This comment has been edited for libel reasons. Thanks, mods.]

Gina Douglas says:
29 May 2012

Thank you so much for the useful information I have found on here tonight. We have found out today that my grandmother has been refused NHS continuing care-this has been an extreme blow as she was regarded as a borderline case not having enough A’s I guess!!-she is currently in end of life (stage 5) Parkinsons and needs 24 hour nursing care. We as a family now have a battle on our hands but are determined to gain justice for her…………so let battle commence.

Gina, do be very careful who you trust. I was very poorly advised and it has cost me big time.
Use up to date information and attack them using their own rules & procedures. Raise complaints to the appropriate department each and every time they do not respond/reply etc.
Not quite what we all need when a loved one is dying is it? There are good forums out there but beware!

Stephen Squires says:
5 July 2012

On this day (July 5th. 1948) the National Health Service Act became law: Although there have been numerous minor changes and amendments, the founding principles of the act have endured: Thus it remains the statutory right of every resident British citizen to receive NHS care ‘free at the point of need regardless of the ability to pay’ In fact every citizen who pays tax has already paid as the NHS is funded by general taxation. The Act does NOT say that those who require long term care – mainly the elderly – are to be subjected to ‘criteria’ to determine their entitlement to the care that is the absolute right of everyone else. Despite the health act core principles having been upheld by the Courts, notably via. the ‘Coughlan’ and the ‘Booker’ judgements, the NHS seek to avoid their duty to provide continuing care by ‘re-defing nursing care as social care’ and shunting patients – and their care costs – on to social services or patients themselves. Many people have succeeded in gaining NHS funded care by proving that incorrect ‘criteria’ were applied or that their own, albeit legally flawed, rules were were ignored! Others have gained an NHS care entitlement by forcing the NHS and social services to obey the law (the Health Act and case law). In other words the whole continuing care question is a (deliberate?) bl**dy shambles!!! Now they seem to think they can silence further protest and dissension by imposing a deadline for further claims – that this will somehow absolve them from addressing the massive public fraud that they have been conducting for many years past! Well there are many of us determined to see that it doesn’t! What is needed is a public enquiry to expose what has been going on – with government complicity – and bring to book all those responsible for what must amount to the Worlds biggest SCAM!