Rationing NHS Continuing Healthcare Funding – The ‘NHS's Best Kept Secret’

Published 29/10/2020

Please note: This article was published prior to July 2022, and some information may be outdated.

Rationing NHS Continuing Healthcare Funding: Retired Admiral Philip Mathias, former submarine Commander and director of nuclear policy at the Ministry of Defence, is rallying public support for his ongoing £5bn legal battle against the Government and NHS England. He is seeking to hold them to account on behalf of thousands of individuals who have been wrongly denied CHC funding and forced to pay for their care unnecessarily – even having to sell their home – as a result of flawed or unlawful NHS assessments.

Admiral Mathias’ story starts after he successfully fought a lengthy and arduous 2 year battle against Wiltshire Clinical Commissioning Group and retrospectively recovered £200,000 of nursing home fees that his 90 year old father paid for his late mother’s care whilst she had dementia and other complex medical conditions. His website, press articles and interviews recant the huge amount of complex analysis needed to process his successful retrospective claim for wrongfully paid care fees, with over one hundred letters written, 3 meetings and more than 300 hours spent battling red tape. He states the “CCG did everything possible to avoid making an eligibility decision. This included ignoring and grossly distorting the evidence contained in her care records.”

NHS Continuing Healthcare Funding (often referred to as ‘CHC’) is a package of care paid for in full, free of charge, and is not means-tested, and covers the cost of care of an individual with a ‘primary health need’ ie the main reason for their care is due to complex health needs which are over and above what a local authority are legally obliged to pay.

Admiral Mathias is now spearheading a fundraising campaign to expose this national scandal by mounting a legal challenge against the Government and the NHS, whom he believes have unfairly denied thousands of elderly, ill and vulnerable individuals – the most vulnerable in our society – of their entitlement to NHS Continuing Healthcare Funding.

Quoting from his fundraising page:

“The initial basis of the legal challenge is:

The Secretary of State for Health and Social Care, together with NHS England, has unlawfully failed to ensure that Clinical Commissioning Group decisions as to eligibility for Continuing Healthcare funding are made in a consistent, rational and lawful manner and that the arbitrary and inconsistent decisions as to eligibility for NHS Continuing Healthcare leads to an unacceptable risk of unlawfulness.”

On the 1^st October 2020, the Daily Telegraph featured an article headed:

“Former head of Britain’s nuclear deterrent to sue Matt Hancock over £5bn care ‘scandal’.

The former head of Britain’s nuclear deterrent is suing Matt Hancock to force the NHS to pay for elderly patients’ long-term health costs.

If successful, the threatened judicial review by Rear Admiral Philip Mathias could cost the health service £5 billion in paid back medical fees.

The case concerns the failure by local NHS bosses to pay for the continuing healthcare (CHC) of tens of thousands of eligible patients a year.

Click to read the full article:

https://www.telegraph.co.uk/news/2020/09/30/former-head-britains-nuclear-deterrent-sue-matt-hancock-force1/

Admiral Mathias’ campaign seeks to highlight the issues of unfair rationing of CHC funding by the NHS, its unlawful malpractice – refusing or withdrawing CHC funding for those who were evidently eligible – and raising awareness of the ‘postcode lottery’ – the huge variance across the country as to who is more or less likely to be awarded CHC funding depending on where you live. Furthermore, Admiral Mathias points out that since 2015, the number of people being found eligible for CHC has been consistently reducing – which goes entirely against the grain in a country which has an ageing population! Surely, over time, more people should become eligible for CHC funding, not less? Why is this trend contrary to expectations? Because it’s all to do with money and the NHS needing to save £855m by 2021! As Mathias puts it, quite possibly, this is the biggest financial scandal in NHS history!

Admiral Mathias has recently reappeared on BBC TV on 7^th October 2020, when he was interviewed by Victoria Derbyshire. You can watch the full interview again here: https://www.youtube.com/watch?v=Fc3fsSEnEBo

However, these issues are not entirely new as our readers will know from their own personal experiences.

Since Care To Be Different’s inception in 2010, we have been at the forefront of raising nationwide awareness of the public’s rights to request a CHC assessments whether for a spouse, partner, relative or friend – where there is a primary health need. Our website provides lots of free information and helpful resources to show you how to tackle the NHS eligibility process for CHC. You can read our numerous articles, share experiences and learn from others by joining the conversation in our blogs and on Facebook. For more reading, we recommend that you buy our book, How To Get The NHS To Pay for Care (available as an e-book or paperback).

Admiral Mathias brought the inconsistencies surrounding CHC funding the public’s attention in February 2019 when the Daily Telegraph wrote a dramatic piece entitled:

“Vulnerable pensioners with dementia facing crippling care bills following NHS attempts to restrict funding”. You can read the article again here: https://www.telegraph.co.uk/news/2019/02/27/vulnerable-pensioners-dementia-facing-crippling-care-bills-following/

Those who say that battling the CHC for funding is not complex, difficult, stressful or emotionally challenging should take the matter up with the Admiral directly! He recently told BBC’s Victoria Derbyshire that “the system is massively complex and well beyond the average member of the public to understand”.

Care To Be Different previously featured Admiral Mathias’ case in our earlier article:

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

The Admiral first appeared on Victoria Derbyshire’s BBC TV programme, in June 2019, when he was interviewed about his first-hand experience of his 2 year battle with Wiltshire CCG to recover £200,000 for his mother’s nursing home fees that should have been funded by the NHS. If you missed it, you can read our article below:

Exposed: NHS Continuing Healthcare makes headline BBC News

You can also read more blogs around the subject here:

When are the Government going to fix CHC?

Is the National Framework still working effectively?

The revised National Framework – what impact will the changes have?

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

“Care crisis fear as over 85s to double by 2043”

BBC Drama, “Care”, Shines A Spotlight On NHS Continuing Healthcare

We wish Admiral Mathias much luck in his campaign.

To read more about Admiral Mathias story and see his fundraising page visit: https://www.crowdjustice.com/case/the-nhs-continuing-healthcare-scandal/

You can add your comments below. Here’s what some of our readers have been saying…

MW says: “This is fantastic news! I’ve been hoping that Admiral Mathias would launch this challenge. Having Rear Admiral Mathias spearhead this legal action will force the Government to now listen and be accountable for the disgraceful way in which CCGs have been operating for too many years. Everyone should get behind this challenge. With an ageing population and almost 12 million people aged over 65 or above, this should be of concern to every sector of the population as we all live longer with complex health needs that will need nursing/care. I was successful in appeal at IRP for my late father, but I may well be faced with the horrendous process of CHC for my elderly mother in the future, something that I never want to face again.”

SM says: “NEWS TODAY: NHS TO BE TAKEN TO JUDICIAL REVIEW OVER NON-FUNDING OF DEMENTIA HEALTHCARE
— This ought to kick the Government out of its foot-dragging over putting forward recommendations for reform of CHC funding”

Tagged Categories: CHC funding, NHS Continuing Healthcare

Share this article

16 Comments

Suzanne Morrison November 13, 2020 at 8:56 pm

Find me on Facebook or any social
Media we need to get everyone’s they call them stories but they are not just stories they are our lives. We my husband and I don’t live we exist.

Jenny November 12, 2020 at 12:51 pm

I'm in awe of Philip Mathias, his campaign and the coverage he has achieved. NHS Continuing Health Care is indeed a long running scandal that is guaranteed to defeat all but the most determined and informed. His efforts will help many.
Again, praise for the ebook which helped me secure CHC for my relative, and a £100,000 retrospective refund of unlawfully charged fees. It took many years, and was an exhausting and exasperating task.
It is a sad fact that many members of the public just don't "get" the issues involved and still see this as something that won't affect them, or is somehow connected with parents having fought in the war, or is about saving for old age and expecting to pay. I wonder how they would react if asked to pay for hospital care or their meals, help to the lavatory and bed laundry when having routine procedures in earlier life, because this is "Social Care"?

I'm delighted the recent newspaper articles (and the case about unlawful Top Up fees) have progressed understanding beyond this for many. I really hope the many CCGs and CSUs who have been perpetrating this scandal are now very worried their activities will be revealed.
How to stop the behaviours continuing?
1. Perhaps make Retrospective Awards punitive. Set the rate of interest not at RPI, but at somewhere around the level of 20%. This is not Public money, it is the money of the patient or their family which has been unlawfully levied due to a delay or failure to assess for CHC.
2. Streamline the reimbursement/restitution procedure and agree nationally the documents to be produced (I had to show LPA and Probate around 10 times during my relative's case ).
3. Ensure agreed payments are made within 14 days, and not many months after the decision. Impose additional interest or compensation if this limit is not met.
4. Train staff at all levels in the National Framework, basic legal procedure relating to capacity, consent and Powers of Attorney, burden and standard of proof, running appeals and "Independent Reviews" and courtesy.
5. Make senior management in CCGs and CSUs personally accountable for repeated failure to administer CHC lawfully.

Jenny November 16, 2020 at 11:38 am

Another point!
6. Draft agreed national policy and procedure (with time limits) for Retrospective claims. Claimants need to know what documentation to produce and how it will be used, and CSUs and CCGs need to know the rules by which they should play.
In my own case the CSUs failed to produce any policy or procedure until the final decision, when they suddenly announced they'd been working to the pre 2012 Periods of previously unassessed care guidelines. My relative's case did not relate to pre 2012 but was unassessed.
However, from their actions throughout the process, their staff seemed unclear they were following this procedure, confusing it with an appeal, an IRP, a LDR and a Complaint at various times. They made up rules and procedure as they went along, few of which made sense, nor seemed in any way lawful.
This has to be exposed and stopped. Making it financially disadvantageous
for CSUs and CCGs to continue in this way, and ensuring the personal accountability of heads of these organisations who routinely decline and maladminister CHC would help.

Ann Marie November 11, 2020 at 11:42 pm

I have been appalled at the CHC team who continually disregard the NSF when undertaking an MDT. They do not take into account the views of the family or believe what we say . Other professionals involved with my relative were not asked for their assessment and none were invited to the MDT meeting ,only the social worker who completed the checklist. The care agency who visited 4 times day were never asked for their opinion ,nor their care records looked at or requested.
I lodged a formal complaint with the CCG which was fruitless . They basically said my complaint would be addressed at the LRP meeting but they would only deal with whether we had evidence .to support the claim .
I felt so bullied by the head of the CHC manager and realised that continuing or providing evidence was a waste of time . We are now awaiting a IRP 2years on .
More checklists have been presented but denied progression to a MDT assessment . My relative has spent a life's saving s on care,next they must sell their home which Boris said no one will have to do .
This system is not fit for purpose and the money for CHC must be removed from CCG’s asap ,they are only keeping themselves in jobs but not delivering the care they are paid to do or that is required . Their salaries need to be re directed elsewhere . They are expensive professionals who have little or no contact with patients . In this case only one hour was spent with the patient concerned in 2years .

Alison November 11, 2020 at 10:22 pm

This is just wonderful news. Since 2012 I have been battling in some form or other against our local CHC department, initially on behalf of my late mother and latterly, on a voluntary basis, on behalf of other families who find themselves in the unfortunate position of having to have dealings with CHC. When families need to become involved with CHC they are at a very difficult time in theirs and their loved one’s lives. To have to seek out CHC, in my opinion, the NHS’s best kept secret and then wrestle with its complexity and a CHC department who seems determined to put obstacles in the way at every turn just adds to this stress. I and many of my friends have had their last months or years with a loved one marred by having to fight for what is rightly theirs. The decision making process often bears no regard to the National Framework and I have repeatedly come across CHC assessors who have little or no knowledge of the framework and personnel who totally lack any empathy or understanding and come across as bullying and intimidating in their dealings with families. Too often it seems that the decision has already been made and the MDT is just an exercise in trying to find a scrap of evidence to support this, despite their often being overwhelming evidence to support funding. In some cases the representative from social care has expressed his or her opinion that CHC should be awarded but this is totally disregarded by the CHC department. This is not in line with the ‘ primary health need’ principle as set out In the NF or the provisions under the Care Act 2014. That somebody, who, like me, has been forced to become an ‘expert’ in CHC through sheer determination and who, unlike me, has found a way to use that knowledge and expertise to challenge the system at the level of judicial review is a joy to my ears. I have ranted and raged for too long. I have talked to anyone who would listen and on the way collected numerous tired and overwhelmed family advocates who just don’t know where to turn. Thank you Admiral Matthias. This is long overdue. I wish you all the good fortune in the world. This will truly make a huge difference to so many people’s experience when a loved one requires support for a serious deterioration in their health.

Care to be Different November 11, 2020 at 2:53 pm

Hi Peter - many thanks for sharing your story. If you would like to chat to us about your situation we may be able to offer some guidance and support. Email enquiries@caretobedifferent.co.uk Kind regards

Veemge November 11, 2020 at 2:06 pm

My brother and I fought to have our Mother's fees paid for seven years from the time she entered a nursing home in 2012, though her death in 2014, to an Independant Review in 2019.
The nursing staff and ourselves requested further assessments over the 18 months' stay but the CCG always found an excuse not to do one. I'm sure this is becase they knew she would have deteriorated from the "borderline" classification she had been given on entering the home.
It was not until the Home's CEO demanded an assessment be done that someone attended and fast tracked my Mother immediately. One month later she died.
The CCG has continually stated that Mum was not eligible but as she was never assessed how can they be certain of that. They will not take into account what the staff at the Home or we tell them.
Good luck Rear Admiral Mathias.

Cate Humphries November 11, 2020 at 1:15 pm

This is excellent. I am a former a hospital discharge coordinator and regularly completed these assessments. I worked in the North of England and then moved back to the South. The whole system is post code lottery. CCG's are not awarding funding when it is warranted in most cases. The needs are massively underscored with nurse assessors acting like it coming out of their own pocket. I have even been involved in a case where the CCG scored a patient 2 Severe's in a local panel meeting and they still refused to fund. Its a disgrace to the nursing profession. In the 12 years I have been involved in CHC I have seen this funding become more and more difficult to get despite nature, intensity, complexity and unpredictability being established. I have heard all sorts of excusing for down grading scores. My personal blood boiling favourite would be, "The patient is unpredictable but is predictably unpredictable so it can be managed". All this when a family member is unwell and deteriorating and the situation is so very stressful and upsetting. This chap deserves another medal and support from all. The Admiral has my pledge.

Jenny November 12, 2020 at 12:14 pm

Thanks for your honesty and experience Cate. I'm interested in your observations. "Predictably unpredictable" is a phrase I first heard uttered in an MDT c2008 and it then gained widespread usage. Similarly the current contortions around Managed Needs and Routine Needs. For a short while (c 2011) there was an outbreak of nurse assessors enquiring when the patient's dementia would "get better". It's almost as if the only training they receive is in these glaring errors and in obstruction.
Having pursued a claim through two CCGs and a CSU it seems pretty clear that a few people at the top of these organisations have some idea about the National Framework and CHC procedure, but it suits them very well to have the system mostly administered by people without that knowledge and who prefer legend, the "We've always done it this way" approach, aggression and omissions to actual training and legal literacy.

Michelle wetherall November 11, 2020 at 8:37 pm

OMG! What a damning indictment of the NHS CHC from someone involved in the assessment process for 12 years. I applaud you for giving your personal experience of this system that has stripped the assets from those ill & vulnerable patients who should have been fully funded by the NHS.
I went through this process with my late elderly father, who had Parkinson's disease and dementia. I fought a long hard battle with my own CCG and finally won at IRP.
Without specialist help, I spent hundreds of hours learning about CHC to the detriment of my own health.
We should all be shouting from the roof tops about Admiral Mathias and his judicial review. It is the only way forward to stop this nightmare happening to other families.
He deserves a knighthood!

suzanne Morrison November 11, 2020 at 11:27 am

I have fought since 21st March 2009 due to a flawed MDT which took away CHC and complex care page from the son the NHS disabled at birth due to medical negligence. In 2009 the NHS saw on opportunity to remove this which in my sons case they stated they would meet their statutory duty of care for for life in court. We were told by the healtoard through the welsh Aseembly in 2011 that my time would be better spent finding and funding a provate neurophysiotherapist for our son rather than fight the NHS.
I never stopped fighting and last year spoke to Rear Admiral Philip Mathias who freely admits he had to relearn the whole system CHC and this is a man who is used to organisation. Since then we have appeared twice on Victoria Derbyshire show been in the newspapers and radio shows raising the awareness as Continuing healthcare is supposed to cover all generations with a health need. We have children today who are denied therapies and care, teenagers and adults plus the elderly denight their basic human rights. Why becase this is my NHS and yours its our future and the future of our children. Its not for sale by any Government whatever the colour of their flag. I have nailed my flag and allegiance to Philip Mathias and you need to do the same even if it is £1 donation towards to cost of legal fees or a share of the crowdfunding page. this may not affect you yet but you will know someone who is fighting a fight for someones dignity and rights. It tears your heart out destroys your own mental health and becomes the whole focus of your life. Donate, share, if you want to save the NHS then start here with me.

Michelle wetherall November 11, 2020 at 9:01 pm

Hi Suzanne,
I have followed your case since learning about CHC and admire your determination and resilience. I am with you entirely! If this system isn't stopped, then everyone at some point in the future will be touched by this, directly or indirectly.
I had never heard of CHC until my late father went into hospital and was discharged into a nursing home through the fast track stream of funding, to then have it withdrawn three months later because he hadn't died!
I spent 3 years fighting my own CCG and won at IRP. The impact on my own health was devastating. Without any warning I suffered an out of hospital cardiac arrest in the midst of the 3 year battle. My family believe this was partly due to the immense stress and strain I was under, trying to fight for justice, look after my elderly mother, whilst watching my dearly loved father deteriorate into a skeleton and die in the nursing home.
I have to praise the NHS for the emergency critical care I received that saved my life, but I can not forgive the NHS for the care my father received in his final years and the way in which this system and its administrators denied his illness and deterioration.
I too, urge everyone to share their stories and PLEDGE.
I am so grateful to Admiral Mathias for taking on this huge commitment. He needs all of our support!

Peter Ireland November 11, 2020 at 11:25 am

In August 2017 I had a lifechanging spinal bleed which left me paralysed from T6. I applied for CHC and firstly whilst in rehabilitation hospital a 'case manager' completed a checklist. This was done wrongly in regards to the National Framework and the score I got was below the amount required. I then had care supplied through the local district council and had to pay the full amount due to my 'pension'. In May 2019 I started anew application as I realised by then that I should qualify and that the first checklist did not comply to the National Framework and there was no evidence examined by the case manager completing the form, I was not given the opportunity to have support in my application.
In May 2019 I was put forward for a full assessment and a DST was completed which was done in a way as not complying with the regulations or the Framework. Evidence I had was ignored and I was refused the claim. I then appealed and whilst the appeal was on going I had a further DST arranged by the District nurses. This was carried out on 2nd December 2019 and again I was refused the funding. I appealed the decision which was in August 2020 dismissed. I have recently been subject of a Local Resolution meeting which will make a decision in eight weeks time.
During my investigations into the process I became aware that on numerous occasions the Framewok and the regulations were abused by the CCG. These incuded :
when one person ie social services disagree with the co-ordinators assessment level -the highest level should be recorded. twice this happened. then the verification process was carried out before the social services had sight of the decision. The Surrey County Council set a rationale that said they would be acting illegally if they had to take up my care and that their opinion was that I qualified for CHC. This rationale was not discussed in the appeal hearing and was never referred to in any papers I had to get this from CCG by asking the office to send it to me. It was not attached to the result letter or the final DST.
I am still fighting for this claim.

Sue November 11, 2020 at 10:55 am

I too have had this, mum used all her savings (75k) and I then had to sell her home to continue paying her fees. She had vascular dementia and is not aware of this and breaks my heart that it would literally kill her if she knew what I had done. I fully support the Admiral in succeeding for himself and everyone of us! God Bless you Sir

Care to be Different November 11, 2020 at 2:54 pm

Sue - do get in touch if you would like to discuss your circumstances with us. We may be able to assist you.

Michelle November 1, 2020 at 4:23 pm

Everyone should understand that unless we support Admiral Mathias in this challenge and make Government accountable for all CCG's operating CHC in the disgraceful manner they have for many years, then the system will continue to take family savings and homes for the nursing/care that should in so many cases be funded by the NHS.
A review of CHC & Social Care and how it is to be funded in the future has to be a Priority and I am so grateful to Admiral Mathias for giving his time and experience to fight this campaign for ALL of us.
Please if you are reading this, then I suspect that you are already embroiled in a fight for CHC?
I am thankfully at the end of my fight for my late father, but remain worried that this process will affect my wider family & friends in the future, just as it will your family and friends. So I urge you to support Admiral Mathias and PLEDGE NOW!