£300million
That’s it’s claimed how much has been wrongly denied in critical care costs to 15,000 families like Ben’s — who had to pay £85,000. So when will they see justice?
AT 26 Ben Ryan was happy, healthy and successful. He had just been promoted at his work as an engineer and, in February 2015, he and his partner had their first baby together. But his life changed for ever when he was diagnosed with Wilson’s disease on the day of his 28th birthday in September 2016.
The rare condition causes copper to accumulate in the body. It left him bedbound, only able to communicate by blinking and shouting — and triggered several bouts of lifethreatening sepsis.
a panel of eight health and social care professionals, six of whom were involved in Ben’s care, said he was eligible for NHS Continuing Healthcare funding (CHC), which is paid to anyone with severe, complex or unpredictable health needs.
But the local health body, which had never met him, overruled it and refused to pay out.
Ben, from Morecambe, lancashire, is just one of thousands of severely vulnerable patients who has been wrongly denied care funding. It has meant his family has had to pay around £85,000 to ensure he gets the help he needs. Health groups are under pressure to make savings but experts say this means eligible families are finding it harder to get funding.
at least 15,000 Britons have been wrongly denied funding worth £300 million, according to law firm Hugh James.
Money Mail has urged families to wage a fightback. Since we highlighted the problem, our inbox has been swamped by heartbreaking tales of families who have battled obstruction, ignorance and serial incompetence in their bid for justice. Their stories reveal:
ClINICal Commissioning Groups (CCGs) have flouted government rules and even engaged in unlawful practices to deny families funds they are entitled to.
VITal medical records have consistently gone missing or are simply omitted from eligibility assessments.
OFFICIalS have downplayed the severity of patients’ conditions so that CCGs do not have to pay out.
RElaTIVES and expert panels who recommend eligibility are frequently ignored, with decisions made instead by officials who do not know the patient.
SICk patients are having to downgrade their support packages when funding is withdrawn, even if their condition has not improved.
The shocking findings have prompted MPs to demand a government investigation into the failings — while families say they have lost faith in a broken system.
AUTHORITIES IN DENIAL
MORE than 175,000 patients were referred last year for CHC, typically worth around £1,000 a week. But the Parliamentary and Health Service Ombudsman found failings in more than a third of 150 cases it probed from april 2018 to July this year.
It said ‘incorrect and delayed’ decisions by CCGs are having a ‘ devastating impact on people’s lives’.
Funding rules are set out in a national framework outlined by the Department of Health.
It says eligibility should be assessed over a two-stage process: an initial checklist that, if passed, is followed by a full assessment. This should be completed by a panel including at least two care workers familiar with the patient.
It must also consider evidence presented by the patient or their family during a face-to-face meeting.
The panel will make a recommendation on eligibility, which should be accepted by the CCG in all but exceptional circumstances.
But in Ben’s case, and countless others, CCGs have run roughshod over these rules. Independent experts Beacon CHC say families often come to them after CCGs have overturned decisions made by care panels, even if it seems there are no grounds to have done so.
Ben’s father John, 66, says the decision meant his son’s rehabilitation programme had to be downgraded because of costs, hampering his recovery and plunging him into depression. He lodged an appeal two years ago and — after being contacted by Money Mail — Morecambe Bay CCG said funding has now been granted. It says it was originally refused because additional information was needed and that he will be reimbursed ‘appropriately’.
BUNGLING OFFICIALS
MONEY MaIl has spoken to several families who say CCGs have ‘lost’ care records or ignored key evidence during assessments.
The ombudsman’s report spoke of ‘a catalogue of errors in checklists and assessments, which meant decisions made about the person’s care were not robust’. It means battles for funding routinely rumble on even after a loved one has died.
Eleanor london, 66, has encountered a litany of administrative disasters during her eight-year fight for retrospective funding. Her mother, Elizabeth Cook, had dementia and died in 2011 aged 84. It was not until after her death that Eleanor heard about CHC and decided to apply.
Her case is now with the ombudsman, following several appeals involving different CCGs. But Eleanor, from Penarth, Glamorgan, says all her mother’s care records for 2011, when she was most severely ill, are missing. She says this has been acknowledged but without explanation.
at one point, her case was archived despite it still being ‘live’, and case notes were sent to the wrong address, breaching data protection laws.
She has also produced evidence that shows Elizabeth had been granted funding in 2010 but never received it. Eleanor says the appeal panel dismissed this as ‘too long ago’ to warrant further investigation.
She says the panel admitted some of the original assessments were incorrect and downplayed her mother’s condition but still would not budge.
around £140,000 was spent on Elizabeth’s care and her home in Barnt Green, Worcestershire, had to be sold as a result. Eleanor, who is retired, says: ‘It is unjust, inequitable and is fraught with errors and bureaucracy. We are continuing our fight to ensure that this system is overhauled. But it is truly not for the faint-hearted.’
lisa Morgan, partner at Hugh
James, says records go missing either because CCGs have outsourced reviews to different firms and paperwork gets mislaid or because appeals take so long to be actioned that records are destroyed in the interim.
She says CCGs will omit evidence presented by the families in their final reports. When the outcome is challenged, appeal panels will note there are missing records, whereas in fact they were submitted, just not passed on. She adds: ‘I have had stories from families where a time has been set for the assessment, the family has arrived but the CCG had started the meeting early and already determined the levels of need without their input.’
CARE NEED NOT MET
MaNY, like Eleanor, have had to sell their homes to cover costs. But others simply cannot stump up the cash, meaning they have to opt for cheaper care packages that do not meet the patients’ needs.
Stalemates often occur between the CCG responsible for health and the local authority that handles social care. The CCG says the patient is ineligible for funding because they do not have a primary health need and tries to foist them on the local authority.
The local authority will push back, insisting that the patient does, in fact, have complex health needs, which it is not equipped to deal with. It leaves the patient in limbo.
Patients stripped of funding during annual reviews often have to downgrade their care packages because they can no longer afford the ones they are on, despite families insisting their condition has not improved.
The Mail has previously revealed that more than 1,000 seriously ill patients are stripped of CHC funding each year.
Beacon say local CCGs set their own rules and interpretations of the national framework, leading to huge inconsistencies across regions.
a patient living in Salford, Greater Manchester, is 18 times more likely to be awarded funding than one in luton, Bedfordshire, for example.
MONEY TALKS
THERE is no cap on CHC funding but NHS England wants CCGs to make £855 million of savings on CHC and NHS-funded nursing care by 2021. It plans to do it by cutting administration
costs and applying the eligibility criteria more consistently.
Getting decisions right first time would stop costly reviews. CCGs paid out at least £27 million in interest on backdated claims and another £27 million to outsource reviews to third parties between 2011 and 2019, according to Hugh James. But the number of patients deemed eligible for CHC has dropped by 18 pc since the start of 2017, from 57,216 to 46,760.
Tim Davies, managing director of legal firm Compass CHC, says: ‘People aren’t miraculously getting better just because CCGs have been told to make savings.’
The pandemic has created a huge backlog of applications after around 25,000 assessments were paused during lockdown.
Experts warn that thousands of patients could be denied funding unfairly as officials rush through cases.
One pensioner, who did not wish to be named, told Money Mail that her 81-year-old husband had been stripped of funding following a review over the phone by officials who had never met him. The family is having to downgrade his care package but insist his condition has not improved.
Liz Kendall, Labour’s social care spokesman, says: ‘It is unacceptable that patients are being denied CHC funding, despite being eligible.
‘Ministers must investigate why this is the case as a matter of priority. Everybody who is eligible for CHC funding should receive it, and the Government needs to guarantee that every case will be looked at fairly.’
Munira Wilson, Lib Dem health and social care spokeswoman, says: ‘The Government must make sure CCGs are both properly resourced and properly accountable.
‘Otherwise, ministers risk yet more people not being given the money they’re eligible for.’ A Department of Health & Social
Care spokesman says: ‘Our priority for adult social care is for everyone to get the care they need during this pandemic.
‘We are committed to ensuring those eligible to receive NHS Continuing Healthcare are identified, assessed, and receive the appropriate package of care. We expect CCGs to comply with the national framework to ensure this happens.’
In Scotland, CHC was replaced by Hospital Based Complex Clinical Care in 2015 after an independent review found it was not fit for purpose. CHC is used in Wales.