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.”
Our comments:
*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:
How do I claim back care fees that have been paid?
What Evidence Do I Need To Prove My Claim For Past Care Fees Paid?
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 info@caretobediffeent.co.uk, 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…
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Gillian Read
I became very exhausted from looking after my husband who had Progressive Super Nuclear Palsy and Lymphoma. I had absolutely no support from my GP and sorting out the funding was a nightmare
I struggled on my own for 3years until total exhaustion forced me to find a nursing home for him. That’s when the fun began. For the first eight months we paid £4.600 month. This depleted our retirement savings to almost zero. When Social Services helped with the payment I still had to find over£1.000 oer month. I am now 76 and have Systemic Lupus which although not active now has left me with many health problems. My husband died mid-June 2020 and it has taken months for me to recover from the stress and anxiety. I can’t forgive our government for treating people who not only become elderly and also dare to become I’ll, so shabbily. I have worked with Independent Age to meet and lobby MPs. We have received tons of sympathetic platitudes but no action. Independent Age is continuing its efforts for adequate financial support for the elderly with age related health problems. My sympathy and best wishes to all the poor souls who find themselves in similar situations.
Philip Mathias’ experience is all too familiar to my wife and me. We spent nearly 3 years and attended 2 hearings before we succeeded in obtaining CHC funding for my late father in law. The process generated bundles of documents of a size that would not have been out of place at a State trial. As a retired lawyer, I found the challenge as complex as any I have encountered in a long career. Coupled with that was the deliberate understating of my father in law’s medical condition by the CCG in an attempt to avoid a conclusion that he had a primary health need. In my view, the 2012 Regulations are clear and the NHS is breaking the law. The National Framework is grossly over-complicated, mis-quotes the law and represents a triumph of managerialism over clinical judgment and common sense. To my mind, this entire issue, which has been kicked into the long grass by successive governments, is rightly described as a national scandal. If our experience can help Philip Mathias in any way, I would be glad to assist.
Hello
In our eight year to recover moms fees. Mom had expert diagnosis of vascular dementia in final stages, NHS assessor, a nurse, said the expert diagnosis of the specialist dementia Doctor was not relevant. Its relevance was that if she had taken into account mom’s care would have been paid from day 1. We have obtained payment from 2013 to 2017 (moms death) and await 2012 and 2013. We have a specialist lawyer, no win no fee and they are excellent, but the NHS put every block in the way and this is a scandal. Luckily Philip Mathias will highlight this and push the country to address the care needs of its elderly who have paid taxes, direct and indirect, and deserve respectful treatment.
I am still waiting for my 2nd DST,l have been in this hell for 5 years,like a
Admiral Mathias l had to read the framework guidelines ect ,and it’s a lot of learning when you are unwell and a widow of 73,the only way l see to encourage the DST ,to be carried out correctly will be a protest outside the CCG’s as CHC is the NHS’s biggest secret,dispite the DOH asking CCG,s to put up posters in clinic’s and surgery telling the public that CHC is available to sick persons ect,they prefere to keep it a secret to protect their finances.
By protesting outside their work places,and informing people that if they or loved ones need care,to first have a checklist done,and go through a DST Assessment, to see if your relative is entitled to continuing healthcare,will bring this secret out into the open,we need everyone to know this funding is there.
I know that this fund that has been kept secret, has caused incredible pain and distress to sick people,all their lives they have payed into the NHS,now they find they are paying twice,when their health needs are called social care needs this needs stopping.
Valerie Bradley
I have been trying to obtain funding for a relative since December 2018 and we haven’t even reached the LRP meeting yet . I have complained to the CCG who will not deal with the complaints re the Process until the LRP meeting.They say the LRP will deal with the complaints re the process .So the time passes and the stress increases for all involved in the care and the NHS pays the personnel who staff the CHC teams of Nurses whose time would be better spent nursing.
Hello Anne Marie – sorry to hear that you are experiencing difficulty with this process. Feel free to call us and we will arrange for you to speak to one of our specialist CHC Advisors if you would like to chat this through – 0161 979 0430 Kind regards
Mrs Mathias was found to be ineligible for CHC in 2016. But, given what is said in the above account, was she awarded FNC at that time ? If yes then there are, in my view, questions to be answered concerning flawed case law in the 2012 Nat.Framework and its exclusion from the 2018 edition.
Like Admiral Mathias I too did get CHC Funding completed on 24th April 2019 for my husband which had been going on since 7th September 2016. I lost the appeal in 2018 and I took the case to IRP where they were so kind and helpful. The trouble is most of the Staff in CCG make their own rules so you never get anywhere..I did not have a Solicitor but like the Admiral I did it myself. I always write down every detail since day 1 when he was ill. My husband has Advanced Vascular Dementia, Bed Bound unable to speak grade 4 Pressure Sore right hand unmovable and looks at you when you call his name. He was Assess as Social Care. We had to sell our home to fund the Nursing Home as we still have a mortgage. .Social Worker said the house is in his name only. She also did his Financial Assessment a month before the CHC Funding Assessment which is illegal.The reason I won the case as the CCG did not assess him as Primarily Health care but Social Care which means you have to pay.
.. They had to refund from date of Assessment 7th Sept 2016 but than they deduct tax on the refund.I would advise Families to fight for their love ones and never give up no matter how long it takes.They were advise by IRP that future Assessment should not happen. like what I had to go through. Good Luck to all Families who are going through the process of CHC Funding.
Could you tell us how you won your IRP. What you said, what they asked. What was the thing that you think you won with?
A tremendously well written account of the process that a person needs to engage in to grapple-wrestle with both-either simultaneously or separately the LA & the NHS.
I particularly found Admiral Mathias referral to ”In the last few years, Wiltshire CCG’s level of CHC funding has been one of the lowest in the country” – as most relevant. I can imagine the hurdles needed to jump to acquire these figures…I doubt they would not have been neatly packaged on a Gov website anywhere…..lots of effort probably –
It would be useful to see where all the LA’s sit in this CHC comparison….
I probably spent a mere 120 hours when I was researching this matter on behalf of my Mum. n the end I surrendered as I could not see light at the end of the tunnel…..caretobedifferent were one of the few valuable resources I was able to draw on in that time…..
My eventual decision (as a COP deputy) was to sell my Mum’s house and pay fees that way…..nigh on 2 years now – maybe 18 months of funding to go – also decided to move her to NE England as saving 800GBP per week compared to London…. a big decision that one….
Thank you for your kind feedback Brian. Regards
Thank you so much Admiral Mathias. The voices of many patients and families are being heard through you. Thank you for publishing your open letter which will hopefully be the start of historical changes to CHC assessments.
My partner suffered a post operative brain haemorrhage followed by hypoxic brain injuries with a punctured lung while in the care of a NHS Warwickshire hospital three years ago. These permanent brain injuries affected all his bodily functions and left him with multiple disabilities from head to toe.
He went through intensive rehabilitation in Leicestershire and discharge was discussed but a CHC assessment decided that his health care funding will stop, playing down all his needs, focused on NHS funding and the Leicester social worker not saying a single word throughout the DST meeting.
After a lengthy appeal, NHS decided to extend funding to Christmas 2018. A few days just before Christmas, the social worker called my partner who was sat in his wheelchair in hospital that a letter for financial assessment is being sent to him via recorded post and he must return the assessment the next day or face self funding.
I was devastated to hear that he was threatened and treated so poorly and complained to Social Services and was assured that it will be referred to their legal team and to the Secretary of state in Leicester.
Social services wanted to transfer my partner to a cheaper care home but the hospital’s Neuro-psychologist recommended that for the patient’s safety and stability to stay put in rehab until our home in Leeds is made wheelchair friendly.
On being discharged from Leicester and arriving home in Leeds, my partner was found to be in severe pain and was passing blood. He was admitted to hospital in Leeds where he was found to have fractured his spine due to falls, treated for UTIs and diagnosed with bladder cancer. Meanwhile we have had a financial assessment with Leicester and there was no contributions required but received a bill of £22,000 from the Leicester rehab hospital as NHS and Leicester Social Services are in dispute.
My partner is currently in a Leeds hospital being treated for pain for his spinal fracture and waiting for cancer treatment. We requested for a CHC meeting but the assessor refused to consider my partner’s health needs due to his brain injuries as no falls have been recorded in the last few weeks while in hospital. The assessor was very aggressive and obstructive. We became distressed and halted the assessment. Our Leeds hospital social worker offered to make a complaint and arrange for a new CHC assessment with a different assessor. However I am coming to the end of my tethers and finding it so hard to cope realising another battle ahead is looming. My partner’s needs have increased and his hospital acquired brain injuries are permanent. We’ve lost three years of life together as a couple and our relationship will never be the same again. Why must CHC add to our pain and how much more can we tolerate? I’ve signed the petition for a public enquiry into CHC funding and hope it will bring action and justice to other families suffering too. Thank you once again, please do not stop your great work Admiral Mathias.