The NHS Continuing Healthcare (CHC) Scandal

by Philip Mathias

The NHS Continuing Healthcare (CHC) Scandal

by Philip Mathias
Philip Mathias
Case Owner
Rear Admiral (Ret'd) Philip Mathias
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Case Owner
Rear Admiral (Ret'd) Philip Mathias
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Latest: Jan. 18, 2021

Excellent Progress - Two Key Milestones Achieved

Application for the Judicial Review. This application has now been made to the High Court. The legal documents submitted (649 pages of them) provide overwhelming evidence that the CHC system is …

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Thank you for visiting my crowdfunding page. I have personal experience of the dysfunctional and failing NHS Continuing Healthcare (CHC) system. My mother had severe dementia and also suffered from numerous other serious medical conditions. After a gruelling two year battle, the NHS eventually agreed to fund her healthcare. On behalf of those who have been less successful and unlawfully denied CHC funding, I am now taking legal action against the Government and NHS England to expose this scandal and to hold them to account.

The Issue

There is extensive evidence to show that in the last five years, tens of thousands of old, ill and vulnerable people have been unlawfully denied healthcare funding. The total level of unlawful financial deprivation is staggering – possibly as high as £5 billion.

Preparations for initiating a Judicial Review are well underway. The aim is to force the Government and NHS England to stop Clinical Commissioning Groups (CCGs) breaking the law and to make sure redress is provided to those who have been unlawfully denied CHC funding.                                           

This man suffered from Parkinson’s disease, ulcerative colitis, double incontinence, chronic kidney disease and he was unable to move or feed himself.  His healthcare needs were deemed insufficient to qualify for CHC funding. The day after that decision was confirmed at an appeal, he died weighing 45kg.

Article from the Manchester Evening News January 2020 - see link below.

What is NHS Continuing Healthcare (CHC)? 

Social Care for the frail and elderly is means-tested and is either provided by the Local Authority, or is privately funded. CHC is not means-tested, as healthcare is free at the point of use. Outside of hospital, NHS England has a legal duty (via CCGs) to fully fund an individual’s care (in any setting) if their care needs are primarily health related. CHC is often referred to as ‘the best kept secret in the NHS.’

Why this Judicial Review Matters

Multiple independent and expert bodies, the media and the public have been highly critical of the dysfunctional and unlawful CHC system. Even the NHS recognises there is a risk of legal action. In 2018, the head of CHC policy endorsed a report, stating:

“The NHS may become open to Judicial Review and severe reputational damage.”

The failure of Government Ministers and senior NHS leadership to take effective correction action is disgraceful and they must be held to account. They are responsible for causing emotional distress and financial devastation to many thousands of old, ill and vulnerable people and their families. This of course does not reflect on the dedication of NHS frontline staff.

My Personal Experience of CHC

My mother had severe dementia and numerous other serious healthcare needs. After a two-year battle with Wiltshire CCG, I eventually recovered £200,000 of retrospective CHC funding (for my 90-year old father) to pay for her nursing home. To achieve this required a huge amount of complex analysis, over one hundred letters and three meetings. The CCG did everything possible to avoid making an eligibility decision. This included ignoring and grossly distorting the evidence contained in her care records. An Independent Review Panel found that the CHC regulations had been contravened in multiple ways. After further analysis, it was clear that many CCGs operate similarly aggressive CHC avoidance regimes. I then formed a campaign team, all whom have had dreadful experiences of other CCGs that have failed to comply with the CHC regulations.

My mother before she suffered from dementia.

The details of the case, along with a comprehensive overview of the CHC scandal, were covered in a front page Daily Telegraph article in February 2019 – see link below.

A Summary of the Key Facts

In 2018 the House of Commons cross-party Public Accounts Committee stated: 

‘The funding system is failing people with continuing healthcare needs and there is unacceptable variation between areas in the number of people assessed as eligible, ranging from 28 to 356 people per 50,000 population. NHS England is not adequately carrying out its responsibility to ensure CCGs are complying with the legal requirement to provide CHC to those who are eligible’.

Unsurprisingly, experts consider that with an ageing population the numbers eligible for CHC funding should have been increasing.  In the last five years, NHS ‘snapshot’ data (the number eligible at any one time) shows exactly the opposite occurred.

There are also huge variations (up to 17 fold) in the award rate of CHC funding across the country, often referred to as the ‘postcode lottery’, which cannot be explained by socio-economic or health demographics. Many CCGs fail to correctly apply the complex eligibility criteria. This results in people in one part of the country receiving CHC (often 6 figure sums) and others living in a different area, receiving no funding at all. NHS 2019/20 Q2 data shows that if you live in Richmond or Salford you are six times more likely to receive funding than if you live in Tower Hamlets or Wolverhampton.

There are also many very ill people who have never been assessed for CHC funding because they, or their family, are not even aware it exists, even though it is the responsibility of CCGs to ensure that all potential recipients are assessed.

Legal Action

I have engaged a powerful and experienced legal team who have a track record of success – see bios below. 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.

Funding Targets

In terms of the sheer scale of this scandal, measured by the significant numbers of old, ill and vulnerable people adversely affected and the huge level of unlawful financial deprivation, this is one of the biggest public scandals of modern times. It is therefore not surprising that to mount a legal challenge of this magnitude and complexity, which could potentially end up in the Supreme Court, will be costly. The initial fund raising target is £30,000, with a stretch target of £120,000.

Those who have had experience of this disgraceful CHC scandal will need little convincing that this is a most worthy cause to support but I also appeal to those who have previously not been aware of it. You and your loved ones may well need CHC funding in the future.

Thank you.

Philip Mathias

Further Reading

The Legal Challenge

Link to Daily Express’s Campaign Coverage – 19 January 2021 (1)

Link to the Daily Express’s Campaign Coverage – 19 January 2021 (2)

Link to the Daily Express’s Campaign Coverage – 31 December 2020

Link to the Daily Express’s Campaign Coverage – 17 November 2020

Link to the Daily Express’s Campaign Coverage - 26 October 2020

BBC News Channel - 7 October 2020

Link to the Daily Express’s campaign coverage - 7 October 2020 

Link to the Daily Telegraph’s campaign coverage – 1 October 2020

Link to the Daily Mail’s campaign coverage – 1 October 2020

Link to Daily Telegraph Article – February 2019

Link to Daily Express Article

Link to Daily Express Article

Link to Manchester Evening News

The NHS Continuing Healthcare (CHC) Scandal - A Publication by Rear Admiral (Ret'd) Philip Mathias.pdf

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Update 5

Philip Mathias

Jan. 18, 2021

Excellent Progress - Two Key Milestones Achieved

Application for the Judicial Review. This application has now been made to the High Court. The legal documents submitted (649 pages of them) provide overwhelming evidence that the CHC system is dysfunctional, unlawful and has (and continues) to deny many thousands of very ill and vulnerable people the healthcare funding they are legally entitled to. There are more details of what the evidence proves at the bottom of this update.

Fundraising. We have reached the impressive figure of £50,000, so well done and thank you. That said, unsurprisingly these funds have now been expended on the preparation of this highly complex legal case, so we all need to reinvigorate our efforts to raise more money for the next stage of the legal process in only a few weeks time. Having come this far, I am sure you would all agree that it would be an absolute tragedy if this hugely important legal challenge failed through lack of money.  We have one shot at this - let's not waste it.

Thank you again for your fantastic support - but I now need more of it please!

With best wishes,

Rear Admiral Philip Mathias and the CHC Campaign Team

What the Extensive Evidence Submitted to the High Court Proves:

  • The CHC Decision Support Tool (DST), the process by which a funding recommendation is made, is unlawful in that it can routinely fail to identify people with a Primary Health Need, who should receive CHC funding.
  • Since 2015, in the order of 50,000 people have been unlawfully denied NHS CHC funding, a financial figure totalling several £billion.
  • Despite an ageing populationoverall CHC eligibility numbers have significantly reduced since 2015, contrary to false claims by the Department of Health and Social Care (DHSC) that CHC eligibility numbers have been increasing.
  • Against overall declining CHC eligibility numbers, proportionally Fast Track CHC eligibility numbers have increased (low cost) and Standard CHC eligibility numbers (high cost) have reduced.
  • There are huge and unexplained variations in Clinical Commissioning Groups' (CCGs) CHC award rates across the country (the ‘Postcode Lottery’), which the DHSC and NHSE have failed to correct, since agreeing to do so after damning criticism from the Parliamentary Public Accounts Committee's report in 2018.
  • A significant proportion of CHC assessments, which have huge financial implications for those being assessed, are being conducted by staff with insufficient training or the required level of specialist medical knowledge.

Update 4

Philip Mathias

Dec. 18, 2020

Legal and Campaign Update

In the last few weeks the legal team has done a huge amount of work, with invaluable input from the Spinal Injuries Association (SIA). They are a leading member of the CHC Alliance (17 charities) and experts on the legal complexities of CHC and how CCGs routinely flout the law. The comprehensive legal package (totalling about 70 pages) is nearing completion and looks very compelling. There is greater emphasis on the government's failure to regulate NHS England and in turn, the failure of NHS England to regulate CCGs to ensure they comply with the law. Given the significant quantity of evidence, the QC considers it necessary to give the government a further opportunity to respond, prior to formally applying to the court for a Judicial Review early in the New Year.

Unsurprisingly, the legal fees for the preparation of the case are about what we have already raised. Broad order estimates of the total legal fees that we need to raise in the next six months are a further £70K but this will be dependent on the Judge's decision on 'cost capping' of legal fees, in the event that one party loses the case.

As you know, this legal challenge against the government is complex, lengthy and expensive. It is more like a marathon than a sprint but one we have a high probability of winning. That said, it would be a tragedy if it failed through lack of funding. Could I ask you to do two things? First, please dig deeper and make a further donation if you can afford to do so. Second, continue to send the CJ link to all your friends and family and encourage them to also make a donation. Remind them that one day they, or their loved ones, may need CHC funding. In the meantime, my campaign team is working tirelessly with the media, celebrities and organisations to explore all funding opportunities.

For those who would like to know more, since our last update we now have a website which describes, in more detail, the background to the campaign and what has led us to where we are today Here you can meet both the campaign and legal teams and find out which organisations and celebrities are backing us. There is plenty of useful information for those who are also battling this dysfunctional, unlawful system and links to websites which you may also find helpful. 

All costs relating to the website, advertising and social media are borne entirely by the campaign team members. Therefore you can be sure that with the exception of a small fee that is charged by Crowd Justice, all donations go straight to our legal team.

Thank you all for your fantastic support and I wish you all a happy Christmas, not least to those of you who have the added worry and responsibility of protecting ill and vulnerable loved ones during this dreadful pandemic.

With best wishes,

Philip Mathias and the Campaign Team

Update 3

Philip Mathias

Nov. 17, 2020

Legal Update

We have now had the initial responses to the pre-action 'letter before claim'  from the Government and NHS England. Unsurprisingly, both focus on technical legal arguments why they believe a Judicial Review should not be permitted, rather than addressing the substance of the issues raised. Our QC is not at all concerned by these arguments (he has seen them all before) and for a number of reasons they are not valid. He is now deciding how long to play ping-pong with them before submitting the formal application for a Judicial Review, supported by a significant amount of compelling evidence, which has now been collated.

As I have already mentioned, a legal case of this magnitude and complexity will be a very long drawn out and expensive process. The financial and reputational implications of the Government and NHS England losing are significant and they will probably take every opportunity to appeal, obfuscate and delay but many of you already have personal experience of this type of behaviour by CCGs. Please be in absolutely no doubt that none of this will deter my campaign team, my legal team and I from fighting this battle to a successful conclusion - quite the reverse.

The Campaign Team's focus continues to be on fundraising to support the legal case. We have launched a new website this morning - and we also now have two celebrities onboard - Stan Collymore (the former-footballer and Daily Mirror journalist) and Jimmy McGovern (the screenwriter and producer). We remain extremely grateful for your generosity, so please keep on spreading the word and the CrowdJustice link. I am also humbled by your kind words of support and apologise for not being able to reply to you all individually. Your stories make me feel both angry and sad and even more determined to right this disgraceful injustice.

With thanks and best wishes,

Philip Mathias and the Campaign Team

Update 2

Philip Mathias

Oct. 27, 2020

Good progress!

Good progress is being made. The Judicial pre-action claim letter was sent to the Secretary of State and NHS England last Monday and they have 14 days to respond. More details of the legal challenge can be found in the 'Further Reading' section.

Thank you all for your kind words of support and donations, without which this legal challenge would not be possible. Please keep them coming and keep on spreading the word and the Crowd Justice link!

Kind Regards,

Philip Mathias and the Campaign Team

Update 1

Philip Mathias

Oct. 9, 2020

Initial Funding Target Reached in only Eight Days

What a fantastic result to reach the initial target of £30,000 in just over one week! Thank you all so much for your donations, personal stories and kind words of support; they make my campaign team and I even more determined to fight and win this battle. The NHS was established to alleviate suffering, not to create it.

Your donations are being used to fund the gathering, collating and analysis of extensive evidence from multiple sources and the complex process of preparing the initial basis of the legal challenge. This first stage is nearing completion and the initial formal submission will be sent next week.

There is of course still much to do on the funding front, so please keep on spreading the word and sharing the CJ link! At the same time, we are also investigating other potential additional sources of funding.

Thank you all again for your outstanding support.

Philip Mathias

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