CHC or Continuing Health Care is funded locally. There are large disparities between the North and the South of the UK in the prevalence of funding, but since it is not means tested this should not be the case. Continuing Health Care funding needs to be rationed honestly, universally, and overtly, and to avoid Post Code differences. The only fair way is by a third party without the Perverse Incentive to refuse to fund.. Refusal sees to be occurring in the richer areas where housing is more expensive, and assets are greater. So covert rationing seems to be happening. Do the rules need to change to avoid Sinicism? There is an irony that the richest areas who spend least on CHC are going to have more money to spend on other services, thus increasing inequalities.
The Sunday Times reports 6th December 2015: At 95, I’m fighting the NHS to fund wife’s care – The health service has had to stump up millions in back payments after wrongly refusing to cover bills. A war veteran tells Ali Hussain his story
What is NHS Continuing Healthcare?
BBC News 20th Jan 2014: Patients ‘not ill enough’ for care funding – BBC News
HE FOUGHT in the Second World War, but Don Keiller, 95, today faces a very different kind of battle — to help his beloved wife of 68 years obtain NHS funding for her care.
Vicki, 89, has dementia. The former accountant is bedridden, hallucinates and often does not recognise the people around her. Her care needs eventually became too much for her husband to cope with alone.
Two years ago, she was moved to Midfield Lodge, a nursing home near Cambridge. “I go to see her every day,” said Keiller. “I don’t know if she knows who I am, but I have to go.”
The round-the-clock care costs the couple nearly £3,400 a month. This comes out of savings that will run out in about 18 months. A charge will then be placed on their home so any outstanding fees will be paid when it is sold after both have died.
However, Keiller and his son, also called Don, believe Vicki is entitled to funding under the NHS’s continuing healthcare scheme (CHC). It covers all costs, including full care home fees, regardless of the patient’s income or the value of their assets. But there is a catch — they must pass an assessment by medical and social care professionals.
Vicki was refused CHC assistance, but the family believe that her assessment was conducted by an unqualified local council representative while the views of her nurse, an expert in geriatric care, were ignored.
There are 62,328 people in England receiving continuing healthcare funding, 5,778 in Wales and 385 in Scotland. The figures are set to grow because of Britain’s ageing population. The number of people in care homes is expected to rise from 312,695 to just under 500,000 by 2030, according to the Alzheimer’s Society.
The family appealed, and an independent review panel recommended that Vicki’s costs be funded. But Cambridgeshire and Peterborough Clinical Commissioning Group (CCG), which is ultimately responsible for awarding continuing healthcare funding, has refused.
Its decision prompted Daniel Zeichner, the Labour MP for Cambridge, to write to the CCG saying: “The way the group undertakes assessments for continuing healthcare funding must be looked at.”
The Information Commissioner’s Office has raised concerns about the group’s lack of transparency when the family asked for details about its assessment process.
The case highlights the difficulties faced by families when they try to obtain funding. The process has been described as antiquated and “not fit for purpose”. There are wide variations in the level of access to funding across the country.
On average, about 70 GP patients in 50,000 are assessed as eligible for CHC funding, according to the Health and Social Care Information Centre. However, the figure is just 13 per 50,000 for the South Reading CCG in Berkshire, compared with 233 for South Tyneside.
Freedom of information
Money can today reveal that millions of pounds has been paid in retrospective funding to people who appealed against continuing healthcare refusals. The largest single payout was £763,000 in Liverpool.
Money asked CCGs to list the largest retrospective payments over the past three years. The freedom of information request was made after evidence that families are increasingly challenging the decisions of health and social care professionals.
Money revealed in September that one reader had received a £54,000 rebate plus £9,000 interest from the Havering CCG in east London.
Of the 212 CCGs in England, 126 responded and 74 provided the data requested. This revealed that there had been 40 six-figure payments over the three years. The biggest payout by each of the 74 CCGs added up to almost £9m.
The figures prompted an angry response from Baroness Gale, head of the all-party parliamentary group on Parkinson’s. In 2013, the group published a landmark report on CHC funding for people with the degenerative disease, with a clue to its verdict in the title, Failing to Care.
Gale told The Sunday Times: “The current system designed to help vulnerable people with complex and advanced conditions is not fit for purpose and needs to drastically change.
“Providing retrospective payments to people who have had to battle the legal system to get what is owed to them is not the solution. It is appalling that people who are living with an ongoing health condition are forced into a legal fight for healthcare that should be free to them.
“The government needs to act now to overhaul this antiquated system. We have no excuse for abandoning people when they are at their most vulnerable.”
The Keillers’ story
Don Keiller joined the Royal Artillery in 1939. He met Vicki when he briefly returned to Britain after serving in Norway with the North West Expeditionary Force, and they married two years after the war.
Keiller, who became a primary school teacher and a head teacher, said of his wife: “She has always been a very intelligent woman, but about seven or eight years ago she was acting very strangely. She was awkward on her feet.
“It had got so bad that my son and daughter-in-law suggested we move down from Cumbria to Cambridge to be closer to them.”
Their son, a 59-year-old lecturer, was granted power of attorney over his mother’s affairs after they moved south to save his father from having to shoulder the responsibility. Don Sr fears he too may need someone to look after his affairs if his health deteriorates.
About two years ago, Vicki suffered a spontaneous fracture of her leg. It was decided she should move to the nursing home because it would be a struggle for her husband to care for her.
The family sought continuing healthcare funding and an initial assessment was made by Cambridgeshire and Peterborough CCG in August 2013. A team of medical and social care professionals made the assessment with Vicki’s husband and son present.
Using a “decision support tool”, which ranks the severity of aspects of the individual’s condition, the panel recommended that Vicki be given continuing healthcare funding. This was because she had two instances of “severe” need, under the cognition and mobility categories, which NHS guidelines state is “a clear recommendation of eligibility”. However, the CCG said it would be “not be appropriate” to make a decision while Vicki had a plaster cast on her leg because of the fracture.
Sue Jestice, head of complex case management at the CCG, said her case would be reviewed after the cast was removed “to establish how this impacts on her mobility”.
The group agreed to fund the cost of the nursing home until the next assessment. Before it took place, a separate assessment ruled that Vicki was entitled to NHS-funded nursing care. This provides £112 a week, but the family still have to cover the £3,375 monthly fees for the home. If they had CHC funding, all their bills would be paid.
The second continuing healthcare assessment was in January last year. The assessors included a senior geriatric nurse who had looked after Vicki since the previous September, and a care manager from Cambridge social services.
Vicki’s mobility issues were downgraded from “severe” to “high”, though her cognition rating was still “severe”. With only one box ticked “severe”, she no longer met the criteria for a recommendation for CHC funding.
The Keillers asked for an independent review panel to examine the decision. The panel decided that Vicki was entitled to funding despite the findings of the second assessment, and said: “It is expected that in all but the most exceptional of circumstances the CCG will accept the panel recommendations.”
However, Jestice wrote to the family saying: “The CCG does not agree with the panel recommendation.” No details of any exceptional circumstance were provided.
After pressure from the family, the CCG has agreed to a new assessment. Vicki’s husband said: “If I thought I was not entitled to this funding, that’s fair enough, but her condition is so bad in many ways that we should get it. We are being treated very unfairly.”
Why are the Keillers demanding a rethink?
The family believe the CCG assessments were not fair or transparent. Concerns raised by Vicki’s nurse were not recorded in the second assessment, for example.
Keiller asked the nurse to write a signed note expressing her concerns about his wife’s case. It reads: “My opinion, as a nurse that has been caring for Vicki since she arrived at Midfield from hospital, is her situation regarding her mobility remains severe and not high.”
The review panel raised concerns about the omission of the nurse’s opinions from the assessment, particularly regarding Vicki’s mobility issues. “It was unclear why the comments had not been included,” the panel said.
The family also asked the CCG for information about the care manager’s qualifications and his fitness to assess Vicki, as they claimed that he had dominated the second assessment.
The CCG refused to give details, despite receiving a freedom of information request, until the Information Commissioner’s Office forced it to respond. As a result, Keiller discovered that the care manager was not a qualified social worker.
In an email response, Jestice said: “I have been made aware that [the care manager] is not a qualified social worker. He is a very experienced manager. The local authority refers to him as a social worker. He is selected by the local authority to support the continuing healthcare nurses in the [application] process.”
The Keillers claim there is a potential conflict of interest because Jestice is listed as the “programme manager” who has to meet a “savings target” of £1.8m from continuing healthcare funding. This is detailed in the CCG’s operational plan for 2014-16.
Don Jr said: “My advice to those unfortunate enough to have to apply for continuing healthcare funding is to keep records of every piece of documentation from day one. Challenge decisions that you honestly believe to be wrong and never give up.”
What the authorities say
Cambridgeshire and Peterborough CCG said it could not comment on individual cases.
In a statement, it said: “The recommendation that someone is eligible for NHS continuing healthcare is made following assessments by professionals involved in the patient’s care. The group works within the national framework, supported by local policies and procedures. All budgetary decisions are made with full CCG oversight and scrutiny.”
Cambridgeshire county council confirmed that the care manager was not a qualified social worker and he had spent just 90 minutes with Vicki to make his assessment.
The council said: “[The care manager] contributed to a multidisciplinary discussion in his capacity as a care manager employed by us. He is an experienced professional with extensive knowledge of continuing healthcare, and was one of several professionals on the multidisciplinary team who made the recommendation collectively. The ultimate decision regarding eligibility for continuing healthcare was made by the CCG.”
Julie Wood, head of NHS Clinical Commissioners, an umbrella organisation, said: “CCGs have the responsibility to assess claims for continuing healthcare and need to do this against a backdrop of balancing delivery of national and local priorities within their overall resource allocation.”
What the critics say
Luke Clements, a Cardiff Law School professor who specialises in care issues, said: “Families are having to go through a highly stressful and arbitrary process, and often having to employ not inexpensive lawyers, to get funding in situations where 99% of ordinary people would have expected the NHS to be responsible.
“The problem is that in some NHS areas a culture of ineligibility has developed that is in clear conflict with the law and the NHS guidelines.”
George McNamara, head of policy at the Alzheimer’s Society, said: “Figures showing retrospective payments made by numerous CCGs testify to the alarming volume of inadequate assessments for funding that have taken place.”
Another charity chief, Steve Ford of Parkinson’s UK, said: “Although it is pleasing to hear that some of the decisions have been rightly overturned, this is not an avenue that everyone can follow.
“Tragically, some people are dying before they can get access to the care they need or are forced into dire financial situations to pay for care they are entitled to.”
The ‘support tool’ that unlocks care . . . or shuts you out
This is the name of a care package arranged and funded entirely by the NHS. The funding covers all care and residential costs if you have to move into a care home – regardless of any savings or assets you have. If you do not qualify for the funding, you are expected to pay for your care, accommodation or both until your assets, including property, are worth £23,250 or less.
Who is eligible?
Eligibility is not automatic if you have a condition, illness or diagnosis such as Alzheimer’s or Parkinson’s. People with the same diagnosis can have very different needs – one might get funding, another not. Assessments score a patient’s needs and determine whether, overall, their need for care is a health need.
How are needs assessed?
Health and social care professionals use a checklist called a decision support tool that marks patients on their behaviour, cognition and ability to communicate, among other categories. The levels range from “N” for no needs to “P” for priority — the most severe. Under the NHS guidelines, you will be recommended for funding if one category is classed as priority or at least two are severe. But the ultimate decision rests with the local clinical commissioning group (CCG).
Can I appeal against a decision?
You can take your case to an independent review panel, which can recommend that the CCG make a retrospective payment or agree to fund the cost of care. But the panel cannot force a CCG to pay. If you are still found to be ineligible, you can approach the Parliamentary and Health Service Ombudsman.
Data given to Money shows that complaints about continuing healthcare funding rose from 414 in 2013-14 to 423 in 2014-15. Between April and November this year, 415 complaints were made. Rulings in favour of complainants are up from 16.9% in 2013-14 to 19.5% so far in 2015-16.