are the words of former Ministry of Defence official and retired Rear Admiral Philip Mathias, featured in a recent article in The Daily Telegraph on 28th February 2019, following his lengthy and gruelling battle against the NHS to obtain Continuing Healthcare (CHC) Funded care for his elderly mother.
The excellent Telegraph article copied below is worth reading, and echoes the problems experienced by many of our readers, who have similarly been stuck in the system trying to fight the NHS to recover care home fees retrospectively for their relative:
“Retired Rear Admiral Philip Mathias has encountered plenty of conflict in his life but the process of trying to claim NHS funding for the care of his elderly mother tested him to the absolute limit”.
The former Ministry of Defence official, 60, spent two years fighting for continuing healthcare funding (CHC) that his mother Joy, 88, was lawfully entitled to, for her care and treatment for Alzheimer’s disease.
She died in September – just hours after Wiltshire Clinical Commissioning Group (CCG) finally agreed it would fund her ongoing care costs.
Admiral Mathias, who worked as a policy director on Britain’s nuclear deterrent, said: “In terms of complexity, the mental capacity required and the analysis skills needed, applying for CHC funding was as complex as some of the nuclear deterrent policy I worked on.”
“If someone with my experience and expertise found the process so difficult, my concern is that so many people who are applying for funding their loved one is entitled to will just decide it is not worth the stress, especially if they are also elderly themselves.”
Mrs Mathias first went into a dementia specialist home in 2014 but it was not until two years later that her family discovered she was probably eligible for CHC funding.
Under the rules, she should have been assessed on entry to the home, and referred for a full eligibility test, but none was carried out.
Even when she finally had a full assessment, the tickbox system ruled that her dementia-related behavioural problems did not suggest a strong enough “primary healthcare need” to be eligible.
Yet her care home records detail 170 incidents of serious aggression and violent assaults, including biting, punching and kicking staff, damaging property, throwing fire extinguishers and threatening a carer with a knife.
Admiral Mathias says Wiltshire CCG was simply trying to avoid meeting its financial obligations.
“It’s upsetting enough to think about the change that came over my mother but for the CCG to then claim she only had some ‘incidents of challenging behaviour’ was, in my view, a blatant attempt to understate her condition in order to avoid categorising her behaviour as ‘severe’, which would have meant they had to recommend her for funding,” Admiral Mathias said.
He won an appeal which found his mother had been eligible for funding since she first entered the home.
More than £200,000 was paid back to his father, a frail man in his 90s, who had been forced to pay for his wife’s care out of his life savings while the dispute went on.
Admiral Mathias deeply regrets how he was forced to spend more than 300 hours battling red tape in his mother’s final years.
“The scandal of the way CHC is managed is not just a funding controversy,” he said. “It is about the misery and stress it causes at a time in life which is already very sad and difficult, when you are seeing the person you love slowly degenerate.”
“If I hadn’t had to spend so much time fighting for the funding I would have had more time to spend with my father, sister and mother in the final months of her life.”
When Admiral Mathias tried to raise concerns about the way CHC funding was being managed, the CCG chair dismissed him with an email stating: “Paid off and still going on!!”
Wiltshire CCG said it had taken action to increase the number of patients referred and found eligible for CHC funding and was now compliant with national standards*.
A spokesman said the CCG had apologised for failing to fully assess Mrs Mathias, and had apologised to Rear Admiral Mathias.”
*We are not sure what ‘national standards’ Wiltshire CCG are referring to.
Nor are we aware of any national ‘target’ numbers that CCGs have to find eligible to be compliant. CHC funding is not discretionary or subject to affordability. It is a legal entitlement if the eligibility criteria are met – you either get it or you don’t.
The implication is that Wiltshire CCG admits it has been underscoring and failing families for years. It is only now Wiltshire has been found out, that all of a sudden, they are recalibrating their previous assessment criteria to make more people eligible for CHC. Computer now says “yes!” What a remarkable turnaround, if true! Are Wiltshire CCG now suddenly finding swathes of people eligible for CHC after all, just to meet ‘national standards’?
In the last few years, Wiltshire CCG’s level of CHC funding has been one of the lowest in the country, with no credible explanation, as confirmed by the Care Quality Commission. Following a complaint by Admiral Mathias, the CCG was directed to implement a ‘CHC Improvement Programme’, which should now be in place. Wiltshire CCG is now very much under the spotlight and early indications are that more people are being found eligible for CHC funding, although time will tell whether this improved compliance with the CHC regulations is sustained.
Wiltshire’s apology will have come too late for most, faced with a similar struggle over many years. We wonder whether the former MOD official and retired Rear Admiral would have got an apology if he wasn’t so distinguished, or the Telegraph were not involved to expose the NHS’s deficiencies in his mother’s case?
For further information on the subject, read our blogs:
Is CHC Funding the NHS’s best kept secret?
Although, Wiltshire CCG conducted an initial Checklist in 2014 when Admiral Mathias’ mother entered the Care Home, which proved positive, a full assessment was not undertaken (as it should have been) due to an ‘administrative error’. Admiral Mathias was unaware of the situation until he challenged the CCG as to why his mother had not previously been assessed.
Like so many other families, Admiral Mathias shouldn’t have been put ‘through the mill’ and made to struggle for so long by the NHS to get CHC Funding for his dear mother.
His story may come as a shock to those starting out on the CHC assessment process, but sadly, will be all too familiar to those already stuck in the assessment or appeals process, whilst seeking CHC Funding for their relative’s care.
Most individuals who start this process alone, soon find out how daunting and difficult it can be – facing the intimidating NHS’s assessors on their ‘home’ territory – and soon becoming worn out and frustrated by the lengthy process, without really ever getting to grips with what is required on a practical level to achieve success, nor the level of minute detail or advocacy skills needed to prove eligibility for CHC.
In a recent open letter to the Secretary of State for Health and Social Care, Admiral Mathias said:
“At a national level, the evidence indicates that many thousands of old, ill and vulnerable people have been denied the healthcare funding to which they were legally entitled, a figure running into £billions over many years. Many of these people will not have had the ability or confidence to challenge NHS officials and many will not even have heard about CHC funding, often referred to as “the best kept secret in the NHS”.
“This is probably one of the biggest financial scandals in the history of the NHS. It also causes untold stress and anxiety to very ill people when they are at their most vulnerable and is often a major distraction to their families, as they battle with CCGs, when they should be focussed on their loved ones who are often approaching end of life. It is an utterly disgraceful situation, given that the purpose of the NHS is to alleviate suffering, not to create it”.
For more information, read our blog: This month’s key questions about CHC Funding.
I’ve been told that I don’t need legal help with my relative’s assessment. Is that correct?
Yes, that is what the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised October 2018) suggests – that it is not generally necessary to seek professional advice to go through the CCG’s assessment process. See Practice Guidance Note 58.1 (on page 146) which says:
“Do individuals need to have legal representation during the NHS Continuing Healthcare eligibility process?
“58.1 No, although individuals are free to choose whether they wish to have an advocate present, and to choose who this advocate is. This National Framework (supported by Standing Rules Regulations and Care Act 2014 Regulations) sets out a national system for determining eligibility for NHS Continuing Healthcare. The eligibility process is focused around assessing an individual’s needs in the context of the National Framework rather than being a legal or adversarial process.”
Furthermore, the NHS Continuing Healthcare: Refreshed Redress Guidance: 1 April 2015 also says at paragraph 7:
“Individuals do not need to seek legal advice in order to request an assessment of eligibility for NHS Continuing Healthcare and there is also a mechanism to request a review of a decision on eligibility. CCG’s and third sector services will help and advise individuals or their representatives on the process that will be followed in line with the ‘National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.”
CHC is an area where you can undertake the assessment process without (legal) assistance, and some do so successfully, just like Admiral Mathias. But don’t be fooled! Like the original founder of Care To Be Different, who fought a 4 year battle to get CHC for her parents, Admiral Mathias is more the exception than the rule. Look at the number of hours (300!) that it took, which could have been spent with his mother instead; years of dedication and patience; and the sheer mental and physical stamina and determination needed to fight on and plough through the NHS National Framework, and read extensively around the subject. We ‘salute’ Admiral Mathias, who is undoubtedly a rare success story, against the odds. Others in a similar situation could be forgiven for giving up and ‘abandoning ship’.
If the CHC process was much simpler, more straightforward, less subjective and open to abuse, imagine how many more people could be entitled to CHC Funding, and how many precious hours could be saved by both claimants and the NHS.
Browse the Care To Be Different website, which is crammed with free resources, information, tips and articles, to help you understand the CHC assessment and appeals process.
Get help: Remember, you don’t have to fight this battle alone like Admiral Mathias. If you want individual support from a CHC specialist, who can take the strain and stress of the claim off your shoulders, visit our one-to-one page.
Also read our helpful blog on advocacy: Can The MDT Panel Refuse To Proceed If I Have An Advocate?
You can email your queries to firstname.lastname@example.org, or you can also call us on (0161 979 0430) for free advice.
Care To Be Different would like to thank Admiral Mathias for his personal involvement in this article, and helping to raise awareness of CHC funding issues.
If you have successfully obtained CHC Funding for your relative, like Admiral Mathias, why not share your experiences with others and leave a comment below…