FOR Megan Jones, applying for a special type of funding to cover care costs for her mother was like going into battle.
“I am pretty sharp,” she said. “And I have got a good fight in me. But it has left me bruised. It’s as if you’re in a war zone.”
Mrs Jones, of Carmarthenshire, is one of thousands of people who apply for NHS Continuing Healthcare every year.
In her case, it was for her mother, whose Alzheimer’s disease had taken a catastrophic turn after a fall at home.
Families across Wales are plunged into crisis every day in similar situations when a loved one has a severe stroke, or some other serious health episode which leaves them with complex and far-reaching needs.
As well as the emotional roller-coaster and numerous practical arrangements that have to be made, the prospective of care costs of hundreds of pounds per week can start to loom.
This can mean families whose relative meets means-tested criteria paying out tens of thousands of pounds — sometimes requiring the sale of their loved one’s house — until that person’s savings have been run down to a certain level.
However, there is an alternative.
What is NHS Continuing Healthcare?
If a person has a “primary health need”, they are eligible for free care costs, which is known as Continuing Healthcare.
It is probably the £361 million a year health bill in Wales you’ve never heard of.
Funded by the NHS, Continuing Healthcare it is a financial game-changer for families.
It can be provided for someone being looked after at a nursing home, or at their own home.
But defining what a “primary health need” actually is can be complex, and controversial.
Some people argue that the Continuing Healthcare assessment process is too subjective, and applied inconsistently from area to area.
And for the uninitiated, it can feel fiendishly complicated and overwhelming.
Megan Jones’s story
That was the case for 59-year-old Mrs Jones.
“If you’re an elderly person on your own going through this, you have got no hope at all,” she said.
“I feel something needs to change.”
Health boards must follow guidelines to establish someone’s eligibility for Continuing Healthcare, and the Welsh Government says there is Wales-wide oversight of the process.
Mrs Jones’s experience dates from her mother’s fall in early December 2016. At the time her mother had been diagnosed with Alzheimer’s, but was managing at home with help.
“Once she went into the ambulance after the fall her character changed altogether,” recalled Mrs Jones. “She started shouting, and she didn’t stop shouting until her death.”
She died on October 25, 2018.
Recalling those early hospital visits, Mrs Jones said: “Going up to the ward I could hear my mother shouting. It was like a knife going through me.”
She described her mother as a quiet, respectable farmer’s wife who went on to work in school kitchens and then Glangwili Hospital, Carmarthen, where her final role was as a pathology lab assistant.
Mrs Jones is a private person, her memories are raw, and she asked for her mother’s name not to be publicised.
“She had a slow and painful death,” said Mrs Jones. “There was nothing left of her by the end — she was a skeleton.
“We saw her suffering — an animal would not have had to endure that, but that’s life in the Alzheimer’s world.”
Mrs Jones said the Ammanford care home where her mother was looked after before passing away did its best. “You cannot fault the staff there,” she said.
But her mother’s slow unravelling was traumatic.
Like many elderly people with complex and debilitating conditions, there were the infections, the distress, the pain, the medication balancing act, the sudden move to a new facility, the problems eating, drinking and swallowing, and the loss of weight.
“It was absolutely horrendous,” said Mrs Jones.
She had meetings with health and other professional staff to plan for her mother’s care, but said she felt the odds were stacked against her when it came to Continuing Healthcare.
After one of the meetings, however, she said she was advised verbally that her mother would qualify for it.
“It was a relief — we shook hands,” said Mrs Jones. “But I had a phone call after a week from the health board saying it had been refused.”
Mrs Jones claimed she was told this was because her mother was not losing enough weight, and that the notes that the care home had written didn’t correspond with the family’s.
Mrs Jones, a farmer’s wife like her mother, said her own daughter was a huge support throughout this time.
Another Continuing Healthcare assessment was carried out on October 23 last year, this time with an advocate from the Alzheimer’s Society present.
Mrs Jones said she was told a short time later that Continuing Healthcare had been awarded from October 23 onwards.
“Eight hours later (after being told) my mother died,” said Mrs Jones. “That’s the insult.”
Mrs Jones has now submitted a retrospective claim to cover the period her mother was in the Ammanford care home.
She said she had always been in dispute about who should pay for her mother’s care — in her case this meant that family had not paid the costs at the time.
If she is unsuccessful in her retrospective claim, she said she will be responsible for a huge care bill, plus interest.
Mrs Jones, who overcame a serious illness herself in the early days of her mother’s condition, said she would not have been able to deal with the Continuing Healthcare process without her daughter.
She urged people in her situation to ensure they have power of attorney for health and welfare so they can make decisions on their loved one’s behalf.
“Get support from the Alzheimer’s Society — they are brilliant,” she added. “Find someone who can write a good letter. And don’t give up.”
On reflection Mrs Jones, who lives near Carmarthen, believed there was a key moment when she could have pushed for her mother to go back to her own home, despite the right medical equipment not being ready to support the transition.
“I think it would have perhaps eased the trauma she went through,” she said.
“I do beat myself up about it. I feel I failed at the end. It’s the guilt that gets you.”
What the health board said in reply
In response to the concerns raised by Mrs Jones, Mandy Rayani, director of nursing, quality and patient experience at Hywel Dda University Health Board, which covers Carmarthenshire, said: “Whilst we cannot discuss individual cases through the media, we are always concerned to hear about any patient or their family who are unhappy with the care they have received as we strive to provide excellent health care for our communities.
“We know we don’t always get it right and would encourage anyone who has concerns regarding the level of care that they have received to contact our patient support team.”
Watchdogs’s previous concerns about the process
Continuing Healthcare in Wales has been examined by the Public Accounts Committee and Wales Audit Office, among others.
Just over five years ago, the accounts committee concluded that the Continuing Healthcare framework was being inconsistently applied across the country.
There was a lack of understanding among the general public, it said, over who was eligible for funding and how they could apply.
It said: “Of particular concern was the impact on patients and their families of delayed decisions relating to claims which could leave some facing financial hardship while claims are settled.”
In 2015, the Wales Audit Office said some progress had been made following the introduction of a new Continuing Healthcare framework, but that “significant concerns” remained over the approach to retrospective claims. At the time of the report, nearly 6,000 people in Wales were in receipt of the funding.
The view of a solicitor
Solicitor Lisa Morgan represents families caught up in Continuing Healthcare difficulties.
She sees relatives under immense strain.
“People are so distressed — it is such an emotive subject,” said Mrs Morgan, partner at Cardiff legal firm Hugh James.
“Families are in a very, very difficult situation. Maybe mum has had a severe stroke, and they are told she is going to have to go into a care home.
“Suddenly, they are having to challenge a very bureaucratic system, which is saying their needs are not very great.
“It’s a last resort to put loved ones into care. There is not usually a choice — they are in a desperate situation.
“Money is tied up in a property, suddenly they’re facing huge bills at a very emotional time.”
Mrs Morgan said families were often not aware of Continuing Healthcare, and that those potentially eligible were not assessed when they should be.
She said some people were assessed too strictly and that the decision support tool — a method used by the multi-disciplinary teams during assessments — was in her view “far too subjective”.
This decision support tool covers a series of care domains such as mobility, breathing and continence, scored on their intensity, complexity and unpredictability.
The person being assessed is marked in each domain from “no needs”, all the way to “severe” or, in just a few domains, “priority”.
Mrs Morgan said she felt the difference between levels was “very slight and open to interpretation”.
Just one “priority” score, she said, qualified that person for Continuing Healthcare.
Mrs Morgan said she was not seeing enough evidence that health board decisions refusing Continuing Healthcare were being peer-reviewed, as they should be.
She added: “I don’t see local authorities challenging decisions as much as they should.”
Asked what families’ reaction was following a successful challenge, Mrs Morgan replied: “It’s the acknowledgement that their parent was very ill. It is a huge relief.
“These are people 30 or 40 years ago who would have been in community hospital beds, but unfortunately they are not available.
“Sadly people die after they have gone through the assessment. Their family knows that their parent had worked all their lives for the NHS to be there for them when they had the greatest need.
“This is not compensation. This is money that should never have been paid in the first place.”
This son said the system lacks accountability
One man Mrs Morgan helped described how his father was admitted to a care home in 2012 due to his increasingly violent and erratic behaviour — symptoms of the vascular dementia he had been diagnosed with.
The man, who has asked not to be named, said his mother suffered a stroke the following day and was dead within a month.
Meanwhile the father was moved to a psychiatric hospital.
The son said: “When I visited the hospital the next day, my father was so heavily sedated that he lost his mobility. This remained the case for the next few weeks.”
Out of blue, he said, his father was transferred to a care home and then back to the psychiatric hospital following attacks on fellow residents and staff.
Fast-forward three years and a Continuing Healthcare assessment was carried out, but he said his father not only failed to receive funding but was considered fit for discharge to a nursing home.
The son said he requested another assessment, and then sought legal advice.
In May 2017 his father died. Now, claims for two periods of Continuing Healthcare funding have been successful.
After five years of stress, the son said: “To receive retrospective costs, albeit partially, does feel like justice is done in my father’s memory.”
But he felt there was a major lack of accountability.
The Welsh Government is to publish a new framework after consultation
The Welsh Government said Continuing Healthcare was subject to an independent audit process, and that nationwide measures were in place to ensure eligibility was fair and consistent.
A Welsh Government spokesman said the decision support tool used by the assessment team “should not replace professional judgement on whether the totality of a person’s needs demonstrate the four key characteristics of a primary health need— intensity, complexity, nature and unpredictability”.
So, has the Welsh Government seen evidence of a more restrictive interpretation of the eligibility guidance?
The spokesman said: “We have not seen evidence of stricter interpretation of the decision support tool through any of the governance and accountability mechanisms.”
But he said a revised Continuing Healthcare framework was going to consultation across Wales and would be published around spring time.
As things currently stand, “care co-ordinators” gather evidence on behalf of families and health and social care staff during the Continuing Healthcare eligibility process.
Their role “can be complex and challenging”, said the Welsh Government’s own framework.
Rhian Manley’s story
Rhian Manley said she was the driving force in ensuring that her father Robin Manley was assessed for Continuing Healthcare.
Mr Manley, of Cardiff, is a type one diabetic who managed his complex condition himself before a major stroke two-and-half years ago.
“He was probably one of the fittest diabetics you will find,” said Rhian.
The stroke robbed him of his speech and the use of his right arm, and meant he was no longer able to manage his diabetes.
Getting this right is vital as diabetics can suffer hypoglycaemia when their blood sugar level is too low, and hyperglycaemia when it’s too high. The consequences are serious.
Rhian said: “After we got over the initial shock and the emergency treatment, I knew that my dad was going to be a different case for the healthcare team.”
Mr Manley, 71, was cared for at the University of Wales and then at Llandough Hospital.
“I knew it was going to be really hard to get dad home,” said Rhian. “Not only did he need social care and nursing care, he needed clinical decisions to be made frequently about his blood glucose level to avoid significant ‘hypos’ and ‘hypers’, and to avoid hospital admissions.”
Rhian, a pharmacist who works in England, began reading up about Continuing Healthcare.
She felt it was hard to find a health advocate with the depth of knowledge to get the best outcome for her dad.
Hospital staff were caring, she said, but hard-pressed.
Desperate to get her father home, Rhian sought the support of her local MP.
Eventually Mr Manley was discharged from hospital , with a district nurse visiting his home twice a day to administer insulin.
Rhian said: “He probably would have died or spent many more months in hospital because despite staff trying their best, it was not the safest place for his individual needs.”
Mr Manely’s wife, Frances, deals with all his other care needs — and she can administer insulin in an emergency. She is alerted to problems by a diabetic chip implanted in her husband which is linked to her iPhone.
“We need to be with him 24 hours a day,” said Rhian.
One weekend, she wrote down everything that she had to do while caring for her father.
She said she “fought and fought” to get Continuing Healthcare, and that it was finally approved last year.
It means her mother now has two half-days off a week and six weeks of respite a year, with Mr Manley temporarily going into a nursing home.
“Financially it’s a huge weight of our mind,” said Rhian, 45. “It means we are not mistakenly paying for his medical care.”
It might sound odd, but Rhian says her father now has a pretty good quality of life, all things considered.
But the stroke has less visible scars.
“He gets more emotional and cries more frequently,” she said.
“My mother is 70 — it has cost her quality of life, and some health.”
Rhian said she has cancelled holidays so that her mother can have a break, and has changed her work shifts to free up one day in every 10 to help out.
These are the sorts of adjustments many relatives have to make.
Wales has an ageing population and, in some areas, high levels of chronic disease.
Meanwhile medical advances continue, meaning complex and acute cases can be managed.
It would be wrong to suggest that every Continuing Healthcare application is a bureaucratic nightmare for families, and Continuing Healthcare funding in Wales has risen from around £100 million 12 years ago to £361 million in 2017/18.
How much does a health board spend?
Abertawe Bro Morgannwg University (ABMU) Health Board, which covers Swansea, Neath Port Talbot and Bridgend, spent £46.9 million on 1,134 eligible Continuing Healthcare cases in 2017/18 – an average of just over £41,000 per case, including mental health and learning disability packages.
The health board spent a further £1.2 million on 86 retrospective cases, excluding mental health and learning disability ones.
Rhian’s final thoughts
But Rhian described her experience as “overwhelming”.
She said: “Luckily I have got good coping strategies.”
She has not complained to Cardiff and Vale University Health Board, but urged people in her position to keep fighting.
Rhian said she wanted healthcare staff to listen more, and make sure the Continuing Healthcare process was applied in the right way.
“It was frustrating to have to be the stereotypical pushy relative ‘who knows best’, but we were proven right eventually,” she said.
“It felt horrible to have to be that demanding. But if we hadn’t, dad would be paying for the care he had a right to receive.”
In response to the concerns raised, Ruth Walker, executive nurse director at Cardiff and Vale University Health Board, said: “Mr Manley receives a small package of domiciliary care and regular respite in a care home funded by NHS Continuing Healthcare.
“The assessment, which resulted in him being considered eligible, was undertaken in the community with the district nursing team, supported by the nurse assessor team leading on his assessment and subsequent reviews.
“The daughter, wife and patient have been fully engaged in the process and subsequent reviews and nothing has been raised in terms of the complaints process.
“We always encourage patients and their families to raise any concerns with the clinical team caring for them to ensure action is taken and that we continue to learn as an organisation.”