Open Letter to the Main CHC Alliance Charities
An Open Letter from Rear Admiral Philip Mathias - the Judicial Review into the NHS Continuing Healthcare (CHC) Scandal
Personal for :
Stephanie Harlard - CEO Age UK
Shan Nicholas - CEO Parkinson's
Kate Lee - CEO Alzheimer's Society
Hilda Hayo - CEO Dementia UK
Sally Light - CEO MND Association
Chris Evans - Editor Daily Telegraph
Henry Bodkin - Journalist Daily Telegraph
Gary Jones - Editor Daily Express
Sarah O'Grady - Journalist Daily Express
Nik Hartley - CEO SIA
Brian O'Shea - SIA (Chair of the CHC Alliance)
Caroline Abrahams - Age UK Director
Ladies and Gentlemen,
As the larger members of the CHC Alliance, you will be very aware of the CHC scandal and the devastating emotional and financial consequences it has upon many of the very ill and vulnerable people your charities support. Many thousands of them continue to be unlawfully denied healthcare funding, often resulting in them being forced to deplete their entire life savings and sell their homes to pay for care, which by law should be funded by the NHS. Despite widespread scrutiny and damning criticism over the last five years from the Public Accounts Committee, the National Audit Office, the Care Quality Commission, the Equality and Human Rights Commission, the Health Ombudsman, a petition calling for public enquiry (which was refused), the media and your CHC Alliance, nothing has changed - in fact NHS England's data shows the scandal has actually got worse.
Given all the above and on behalf of the many thousands of these desperate people and their families, you may be aware that I have now lodged an application in the High Court for a Judicial Review into the CHC scandal, from which I have nothing personally to gain. After a gruelling two-year battle with Wiltshire CCG, which contravened the CHC regulations in multiple ways, I eventually recovered £200,000 of retrospective funding so that my 90 year old father could pay for my mother's nursing home fees - she suffered from severe dementia. Wiltshire is a good example of a CCG operating an aggressive and unlawful CHC avoidance regime - but there are many more that are even worse.
With the support of a powerful campaign team, comprising retired police officers, civil servants and teachers who have all had dreadful experiences of the unlawful CHC system, we have so far raised a total of £88,000, mainly from public donations but also a £5000 grant from the Andrew Wainwright Reform Trust, which focuses on social injustice. Most of this funding has been spent on producing the 649 page legal bundle and other submissions to the High Court. My QC, Ian Wise of Monckton Chambers https://www.monckton.com/barrister/ian-wise-qc is highly experienced and expert in public and health law. In the application for the Judicial Review he stated in the Facts and Grounds:
"It is the responsibility of both the Secretary of State and NHS England to ensure that lawful decisions are made with respect to eligibility for Continuing Healthcare (CHC) funding. The unequivocal evidence is that there is a serial failure of both of these Defendants to ensure that such lawful decisions are made. The systemic faults in CHC eligibility have been well-documented by the House of Commons Public Accounts Committee, the National Audit Office, the Care Quality Commission, Parliamentary and Health Service Ombudsman and the CHC Alliance (comprising 17 charities). The Public Accounts Committee concluded in 2018 that “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.”
More detail of what the evidence proves is at the end of this letter.
So now to my point of writing to you. Having now achieved significant momentum, the greatest threat to a successful outcome of this Judicial Review is not the evidence, which is overwhelming, but not having sufficient funds required for pre-court preparations and the court hearing itself - in the order of a further £90,000. Whilst we continue to fund raise, a financial contribution of £50,000 (£10,000 from each of your charities) would not only send an extremely powerful message that this disgraceful CHC scandal must end but will also significantly increase the chance of a successful outcome. Whilst I appreciate that your charities will all be facing funding challenges, not least as a result of the pandemic, in terms of a cost/benefit analysis, this relatively modest level investment has the potential to make an almost immeasurably positive impact on the lives of the very ill and vulnerable people your charities represent. Interestingly, we are getting an increasing number of people asking us on social media why the CHC Alliance is not doing more to support this legal challenge. A lady commented on our Crowd Justice fundraising page "Surely it is the role of Age UK to fight for those being unlawfully denied CHC funding, so I have now removed my financial support to them to support this Judicial Review."
I have copied the Daily Telegraph and Daily Express journalists (and editors) who have reported on this CHC scandal and the Judicial Review. Sarah O'Grady (Express) has published numerous articles, the most recent only yesterday. In addition to quotes from me, Caroline Abrahams (Age UK) said: “CHC is incredibly important because it provides funding for some of the people with the greatest health needs in our society. It is great that the Daily Express continues to campaign on CHC but extremely sad that this is necessary. In theory the NHS budget is unlimited but in practise, at a local level, it is highly constrained. There is a postcode lottery, with the national framework being interpreted in very different ways in different places.” Note: it is the legal statutory duty of CCGs to award CHC when the eligibility criteria are met - it is not discretionary or subject to affordability. The postcode lottery that Caroline Abrahams refers to is just one, but important, element of this scandal. There are no socio-economic or health demographics that can even begin to explain these huge variations (up to 17 fold). It means that someone in one part of the country will receive CHC funding and someone who lives elsewhere, with the same healthcare needs, gets no funding at all and often ends up depleting their entire life savings and selling their home. In our so called 'advanced' democracy, how can this huge scale of injustice be possible, particularly when it is the very ill and vulnerable who are the victims?
In summary, the harsh reality is that damning criticism and scrutiny from numerous regulatory bodies and extensive lobbying from the CHC Alliance has had virtually no effect in rectifying this disgraceful and unlawful state of affairs that continues to result in emotional and financial devastation to some of the most vulnerable and ill people in our society. Senior NHS and DHSC officials and ministers continue to be in denial and it is now clear that only legal proceedings will force them to take corrective action. For the benefit of the people your charities represent, I am now requesting your support to achieve this.
Should you wish to discuss this legal challenge in more detail I would be very happy to speak with you and I have also copied Ian Wise QC, who would also be happy to be contacted. I have also attached links to our website and CrowdJustice page and my interview on BBC national news in October, prior to initiating the Judicial Review.
Finally, given the huge importance and increasing public profile of this scandal, I would be grateful for acknowledgement that this letter has been safely received, accepting that you will then need time to consider it in detail.
Rear Admiral (Ret'd)
Extensive and overwhelming evidence submitted to the High Court, much of it based on NHS England's own data and some of the DST elements provided by Brian O’Shea (SIA), proves:
· The Decision Support Tool (DST), the process by which a CHC 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. Many of these people suffer from dementia.
· Despite an ageing population, overall 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 because people don't live long) and Standard CHC eligibility numbers have reduced (high cost because of long term illness such as dementia).
· There are huge and unexplained variations in CCG award rates of CHC funding 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 PAC in 2018.
· A significant proportion of CHC assessments, which have huge financial implications to those being assessed, are being conducted by staff with insufficient training, or the required level of specialist medical knowledge.
Of course, the above does not capture the many thousands of people who are never assessed for CHC funding, even though it is the responsibility of the NHS to identify potential recipients. CHC is often referred to as the 'best kept secret in the NHS.'
Further information on the Campaign and Judicial Review can be found at: