The coronavirus pandemic has placed immense strain on a social care system that was already struggling.
Funding crises, staff shortages and the rampant spread of coronavirus in care homes prompted nationwide calls to support an industry which has faced a mounting workload with fewer resources.
But hidden from this public battle are another group.
Waging the same fight but with even less support, they can rely only on their own financial resources, unable to call upon outside assistance during the pandemic even from those closest to them.
“In lockdown, you were not allowed to see family. You were not allowed to see neighbours; they couldn’t pop in and look after the person while you popped out to do some shopping,” says Peter Davis, 63, a home carer for his wife Ann.
“Equally these people were vulnerable [to Covid], so the government were telling them to shield, but they weren’t giving them any extra help.”
Ann was diagnosed with Early Onset Alzheimer’s aged just 64.
She later developed aphasia, making her non-verbal.
Her mobility and ability to perform basic functions, such as eating and maintaining personal hygiene, all slowly deteriorated.
She sadly passed away in January 2021.
Ann’s diagnosis in 2017 forced Peter, then just 59, to leave his job in property to care for her.
Prior to lockdown, he had some routine for his wife’s care.
He received support from a “brilliant” NHS Community Mental Health Nurse, allowing him to go to the shops, see his mother and get fresh air.
These small luxuries gave him a break from the demands of care.
Ann also went into respite homes three times up to February 2020, costing over £1,000 each time.
Then, lockdown came.
Peter’s professional and personal support networks evaporated, his routine disappearing as he alone was tasked with Ann’s care.
Help from local authorities was not forthcoming in the same way it was for the NHS or care homes.
It left him feeling forgotten.
“It makes me so frustrated,” Peter says.
“I had to almost say, ‘Well, look Ann, no one else is really going to look after you, so I’m going to just have to get on and do it to the best of my ability.”
And Peter is not alone.
“Home care hasn’t even been recognised,” says Ariane Lomax, a 24-year-old home care business owner in Norfolk.
“People are promoting to stay at home, which is absolutely great and that’s the whole reason behind them staying home – to keep their independence.
“But on the other hand, the home care sector didn’t get any recognition for still going into people’s houses and risking their families and their lives.”
Self-employed Ariane says she has received no support from Norfolk County Council (NCC) throughout the pandemic.
This included when she had to take 10 days off to self-isolate – after she took a client to hospital.
“Nobody did anything,” she adds.
“They didn’t offer anything; I couldn’t get anything.”
This bleak picture can be somewhat explained by the financial pressures on NCC.
The pandemic created a £45.4 million funding gap by October 2020, of which only £26m has been bridged thanks to a 1.99 per cent increase in Council Tax.
Tax increases prop up the council’s forecast gross expenditure of £1.518bn and net budget of £439m for 2021-22, replacing the £220m decrease in government grants between 2010-11 and 2019-20.
While adult social care remains the biggest spending area, that too is feeling the squeeze.
In 2020-21 alone, NCC’s adult social services made net savings of £18 million, with a further £11m to be saved by 2025.
This does help the Council run more efficiently in a time of austerity.
But in a county like Norfolk, with an older population than the national average, this offers little reassurance to carers like Peter.
A spokesperson for NCC said that the council provided wellbeing kits to family carers and distributed over 2.6 million items of PPE to home carers in the first six months of the pandemic.
A statement added: “We intend to continue to prioritise the Social Care Budget, to provide advice and support to care homes and home care providers, including working alongside colleagues in public health to ensure we’re supporting providers and carers effectively and in line with guidance.”
But for the hundreds of millions of pounds spent on adult social care, Peter received just £165 in council support.
Like many in the industry, he turned to the Queen’s Speech in early May, hoping for greater support.
Instead, he got nine words.
“Proposals on social care reform will be brought forward” were the only mention of the topic in the entire speech.
The deafening silence on the issue has left many feeling angry, isolated and desperate.
“It has gone on for so long, so many governments have avoided the issue,” Peter says.
“[This government] just kicked the can down the road.”
His experience is doubtlessly similar to that of others who have had to endure caring for their most beloved with even less support than they previously relied on.
But there is hope for home carers in Norfolk.
The NCC adult social care budget is set to rise from £252.5m in 2021-22 to £322.5m in 2024-25.
Their spokesperson added: “We have already made the case to central government that the care sector needs a multi-year funding settlement to provide certainty and the ability to plan for the long term, and we are awaiting with interest the details on proposals for reforming social care that were mentioned in the Queen’s Speech.”
Meanwhile, campaigns such as Alzheimer’s UK’s ‘Cure the Care System’ initiative are working to shine a light on this unseen plight.
With the county council estimating there to be around 100,000 informal carers in Norfolk, more support is needed for a sector which affects countless lives, but has stayed off the radar.
The battle for recognition, let alone support, is far from over.