‘I was pushed to breaking point caring for my wife. There are many more just like me’

The UK is home to an invisible workforce of millions of carers, many of whom are entitled to support from local councils but aren’t getting it.

According to recent research by charities Carers UK and Age UK, a growing number of people are increasingly faced with costly bills while they try and secure crucial support from often overstretched local authorities.

One of those carers is 60-year-old Ian Howells, who has been looking after his wife Dany – who has multiple sclerosis – for 14 years.

Ian, who lives in Kent, has spoken to Yahoo News about the difficulties he faced getting funding to help him look after his wife, with – at one point – a care manager saying she would have to be “virtually dying” before she was switched to a funded care plan under the NHS.

His story is symptomatic of a funding limbo that many unpaid carer’s face and Ian is urging other full-time carers in his position to ask for a carer’s assessment, so they can receive the best possible support – without being pushed to their limits.

‘I’d reached a point of mental breakdown’

Ian first started caring for his wife part-time in 2005 before having to switch to being her full-time carer from 2009 as she needed more support. It forced him to quit his job as logistics consultant.

Not only was he juggling his caring responsibilities, he was reeling over the impact of battling prostate cancer.

He is among six in ten carers surveyed by Carers UK who report being “often” or “always” overwhelmed by the situation, with health and wellbeing topping the list of ways in which they are affected.

Carers are entitled to an assessment that shows a local council the type of physical or emotional support they need. This can include anything from help transport costs and keeping the home clean, to access to a care worker or a temporary stay in a residential care home.

However, despite the assessments being a statutory right that is available to the 5.8 million unpaid carers in England, just 360,815 carers were either supported or assessed and reviewed in the last year.

According to Carers UK, 70% were only given information, advice and other universal services or signposting, or did not get any direct support at all.

Ian’s experience echoes this challenge.

“I’d reached a point of mental breakdown and I was in physical distress after cancer surgery,” Ian tells Yahoo News. “If anybody had said to me while I was jetting around the world and running projects, ‘one day, you’ll be on your knees in tears, because you can’t cope’… I would have looked at them and thought that they didn’t know me.”

To make things worse, Ian was diagnosed with osteoporosis putting more strain on his ability to care for Dany. “I need a new knee. I’m trying to do exercise every day, trying to lessen the effect of it. But I’m struggling with things like carrying a full washing basket up the stairs.”

“The process that we’d gone through… it felt like the authorities were resisting doing the assessments for no apparent reason,” he said.

‘You’ve got to be virtually dying before you get that’

In 2015, Ian was told his wife should qualify for NHS Continuing Healthcare (CHC), which is NHS funded, rather than partly through Ian, Dany and Kent County Council.

Unlike the usual local authority route for accessing social care, CHC is an arrangement whereby an individual is assessed as having a ‘primary health need’ that requires a package of care, meaning care costs are met by the NHS.

It took him until 2019, however, to obtain the first set of funding to be given a care package of carer support.

“The care manager had said, ‘oh, you’ve got to be virtually dying before you get awarded that,” he told Yahoo News. “I kept saying we ought to do the assessment – and they wouldn’t do the assessment.

“I later discovered, having been sent a pack of information, it was a statutory requirement to send you a copy of all the information they hold. It left me thinking throughout, ‘Christ, I’m in it doing this for my wife’. What happens to the people that haven’t got someone?”.

Even then, the couple say they had a number of issues with their care providers, with Ian describing the provision through the local council as “absolutely hopeless”.

He said: “I had a carer turn up drunk, throwing up in the toilet. Often we were dealing with a case where two people were supposed to turn up, only one would turn up or no one would turn up.

“We reached a point one day where I just told them don’t bother coming back.”

The couple’s fortunes improved when a second assessment via Ian’s GP in December 2024 allocated the pair a budget to get a cleaner – relieving some of the pressure of household tasks alongside Ian’s caring role.

They have also gained additional support from other carers, a few hours of respite — and some help running the household while he manages his osteoporosis. “It’s a bit of a mental battle at the moment,” he says. “Because it’s all quite new, but it’s enabled me to say to myself, ‘leave it. The cleaners will do that’.”

Local councils under financial strain

Local authorities have acknowledged that the financial pressure of the adult social care spend coupled with budget cuts is affecting their ability to provide quality care. Nine in ten directors of local councils surveyed by Carers UK indicated that they are either only partially confident or have no confidence that their budgets will be sufficient to fully meet their statutory duties in 2024/25.

The amount of money councils spent on carer support was £183m in 2023-24, dropping 6.1% compared to the previous year. Yet overall adult social care budgets in 2023/24 were overspent by £586m, the highest levels for at least a decade.

And it’s difficult to see the situation improving anytime soon. In January, the government announced it was setting up a National Care Service, but carers and campaigners are furious that the service will not kick into action until at least 2028.

Ian agrees that the system needs an urgent overhaul. “Even going through the cancer treatment, there is no mechanism that says, ‘ah, this guy’s a carer and they’re going through the cancer treatment pathway’. We need to actually put them in this other process as well to make sure that they get the right support,” he said.

“The dots just don’t join up.”

In spite of the challenges thrown his family’s way, Ian is urging other carers to seek out an assessment and get the support they need. “It’s taken the pressure off me and it’s enabled me to think more. Regardless of what stage you are at as a carer, go and have that assessment, and have another when you feel your situation has changed.

“It doesn’t sound like a really important thing, but actually it can unlock things that you’re unaware of.”

For more information about accessing a carer’s assessment, visit the Carers UK website.

A spokesperson for Kent County Council (KCC), said: “KCC takes the care of residents, and their carers, extremely seriously and always strives to ensure their safety and wellbeing. For confidentiality and safeguarding reasons, we cannot discuss details of individual cases.

“All complaints received by the council are thoroughly investigated through our complaints procedure and are subsequently responded to. Complainants are advised of the appropriate next steps to escalate their complaints to the Local Government and Social Care Ombudsman should they wish to do so.”