'Had I listened to the hospital doctors my Ros would not be here today'

A man who was told to “prepare for the worst” and “let nature take its course” when his sick wife was admitted to hospital has spoken about how he believes getting her in-home help saved her life.

Norman Phillips, 71, has been a carer for his wife, Ros Phillips, since 2008.

Mrs Phillips, who has MS and dementia, was admitted to hospital 16 times in 2022 - leaving Mr Phillips at a loss as to how he could help her. In January 2022, doctors told Norman his wife was under palliative care.

“On at least two occasions I was asked to consider not treating her and let nature take its course. In January 2022, I was told she was palliative,” Mr Phillips told Yahoo News.

Fortunately for the couple, they were eligible to claim for the NHS's Continuing Health Care (CHC) funding, a type of adult social care that means those with a serious disability or illness have their full cost of care covered - whether that's in their own home or a care home.

A few months later, a hospital's 'in-home' team took over Mrs Phillips's treatment – and she has not been admitted to hospital since, instead enjoying quality time with her husband.

“Thankfully, an in-home team took over Ros’s care," Mr Phillips said. "They managed her conditions and Ros is still with us, contrary to the worst scenario we were told to prepare for.

“There have been no admissions, no recurrence of being unresponsive, her meds have been reduced from 40 tablets a day to 15,” he added.

Battling for money

Mr Phillips is sharing his wife’s story to warn of the difficulties facing families who are struggling to get CHC funding.

According to a report released by Age UK on Friday, many older people with chronic ill health and significant care needs are likely to be wrongly missing out on this critical funding, leaving some with huge care bills.

The charity said there has been a “steep overall decline” in the number of people being assessed for funding through the standard pathway – a 43% drop in the last seven years – even though the number of applicants aged 65+ has grown by 6%.

It also found that thousands of people are having NHS funding for their care withdrawn after living longer than expected.

This new report also contains disturbing comments from families about their experiences in trying to secure and retain CHC funding for their profoundly ill loved ones.

Sir Ed Davey MP, Leader of the Liberal Democrats, told Yahoo News: "The previous Conservative government left social care in crisis and millions are going without the care they desperately need and deserve.

"We need to see a proper plan for social care. One that introduces free personal care to help people live independently and with dignity, that ends the postcode lottery of provision and introduces a package of support for unpaid carers."

The CHC funding process is routinely described as opaque and unfair, causing those trying to get help enormous additional stress at a time when they are already coping with the physical and emotional toll of being close to someone who is extremely unwell or dying.

Age UK has branded it "one of the most pernicious postcode lotteries", and "a complete con”, making it a “recipe for deepening inequalities".

“The data suggest the gap between what it is supposed to do and what it is actually doing is growing,” Caroline Abrahams, the charity director for Age UK said.

“It is deeply unfair to expose families dealing with the serious ill health of a loved one to further trauma by making them battle for money in an opaque system, where decision-making seems pretty ad hoc and happens behind closed doors.

"It’s also a recipe for deepening inequalities, since more advantaged families are much better able to fight for their rights than others.”

'Ros is happier, and I am'

While Mr Phillips has praised the help provided by CHC, he warns that the system “is still not joined up”.

“The problem is that my welfare is still the responsibility of adult care, so getting help is much tougher,” he said.

“In a hospital, the dots are rarely joined by the numerous departments, but at home the team know all her co-morbidities and her care is joined up. The end result is Ros is happier, and I am.

“Sadly, these days being admitted to hospital is the last thing anyone wants, as you become a problem that has to be solved by a series of different departments that rarely talk to one another,” he added.

Since securing the right care, Mr Phillips said he and his wife have visited the Shard, the Norfolk Broads and to York.

“Had I listened to the hospital doctors, my Ros would not be here today,” he said.

Now, he wants to see more families get the support he and his wife have been given.

"The end result is Ros is happier, and I am."

An NHS spokesperson told Yahoo News: “Eligibility for NHS continuing healthcare funding is determined on an individual basis by local health and social care professionals in line with guidance and regulations set by the department of health and social care.

“Regardless of age or diagnosis, if an individual is deemed eligible then their care should remain funded under continuing healthcare.”