Unpaid carers ‘running themselves into the ground’ to help loved ones

A WOMAN who has cared for her mother for 30 years has said she feels “incredibly angry” that family carers are being asked to prop up a failing system.

Northern Ireland’s five health trusts all released appeals on social media over Christmas and the new year, asking families to take home patients who were medically ready to be discharged.

The Belfast Trust said its emergency departments at the Royal Victoria Hospital and the Mater Hospital were “under extreme pressure” and asked the relatives of people ready to be discharged to take them home.

“Those discharged who require a care package will be followed up at home,” the trust said.

However, Louise Vance (43), from Belfast, who has been caring for her mother, now 78, since she was 13, said families desperately need more support.

Ms Vance’s mother suffered a brain haemorrhage in 1992. In 2015, she was diagnosed with a series of serious illnesses, including chronic heart and lung conditions.

Ms Vance, who is her mother’s sole family carer, said the trust’s call made her feel “incredibly angry”.

“I’ve had a caring role for my entire teenage and adult life,” she said.

She added: “I've made so many sacrifices, which I don't regret for a second.

“I'm lucky enough that I have a fantastic partner, Adrian. And he really supports me in everything that I do, but I still have to live with my mum.”

Craig Harrison, from the Carers NI charity, said it is unfair to expect friends and families to provide all the care their loved ones might need.

“What the trusts are saying, essentially, is that it's up to family members to take on even more, to cover for gaps in statutory services,” he said.

Mr Harrison said it can take “weeks or months” before appropriate care packages are set up.

“You have people who are running themselves into the ground every week looking after their loved ones already… so, it's something that absolutely infuriates carers when they hear it,” he said.

“We’ve relayed that to trusts over periods of time but it keeps popping up.”

Care packages

The care system in Northern Ireland has come under increased pressure over the last few decades due to our ageing population, a lack of funding and care staff.

In 2011, 263,720 people were in the over-65 age group, compared to 326,477 in 2021.

One in four people in the north also have a limiting long-term health problem or disability, according to the 2021 census.

Care packages, which usually involve carers carrying out tasks including housekeeping and helping people wash and dress, are aimed at helping people continue to live in their own homes.

The number of people waiting on a home care package has grown from nearly 700 in 2016 to more than 3,000 by February 2022.

At the same time, the vacancy rate for social care staff employed by the health trusts rose from 1.7% in 2011 to 10.4% in 2021.

Independent providers, which provide around three quarters of all home care, are also struggling to recruit and retain staff.

Mr Harrison said the “single biggest issue” is a lack of staff.

“When the pay isn’t adequate and the system they're (carers are) working under just doesn't work, then you're just never going to be able to attract the people that you need,” he said.

He added: “When you consider we have a Northern Ireland population of less than two million people, it really shouldn't be that difficult to put a property functioning care system in place.

“But everything's so fragmented. For example, it's much easier to get access to (a care package) if you live in an urban area versus a rural one because of the additional challenges that that brings to delivering care.”

A major review of the care system, Power to People, published in 2017, made a series of recommendations, including that all professional carers earn at least a living wage.

But Mr Harrison said much-needed reforms have not been made.

“We've had a fully functioning government in place for less than a third of the time since that report was published,” he said.

“If you're trying to tackle one of the, if not the biggest, defining policy questions of our age, how do you fix the social care system without a government in place? You're going to have one hand tied behind your back.”

Unpaid carers

Over the last 20 years, the number of unpaid carers - typically family members - in Northern Ireland has risen by around 20%.

Census figures show that in 2001 184,434 people provided unpaid care. By 2021, that figure had risen to 222,216.

A report by Carers NI, published last year, found that 7% of people in Northern Ireland provided 20 or more hours of care per week in 2021, compared with 4.5% in England and 5.8% in Wales.

Carers are also saving the north’s health service £5.8 billion in care costs each year, the report found.

Ms Vance said many family carers she has spoken to are struggling to cope.

Last Christmas, her mother suffered a serious infection and did not recover for several months.

“At the moment my mum, touch wood, is thriving and doing incredibly well but I know the second that if there are any issues with her chronic conditions that cause any kind of deterioration, even if that's an acute deterioration that will only last a few weeks or a month, I could put myself in a very, very precarious position in terms of the care that would be needed, because I know it'll be pushed straight back onto me,” she said.

Ms Vance broke her arm last year, which made her caring responsibilities particularly difficult.

“Carers do it because we dearly love our loved ones and we want the best for them,” she said.

“We will make the sacrifices that we need to make to keep them healthy and well, keep them in their home, and keep them thriving. And the problem is the social care system knows this.”

Ms Vance said although the care system needs more investment, she would also like to see more legal protection for carers.

“We need a protection of carers’ rights, first and foremost, “ she said.

“It frustrates me when social workers say ‘all carers have a legal right to have a carers’ assessment done every year’... However, that carers’ assessment says I’m in need of four or five different things. Regardless of what the report states, (there is) no legal obligation to do any of those recommendations.”

“We need more legislative support, much in the way they have in Scotland. The issues and challenges that are identified in carers’ assessments, there’s actually a legal duty of care to follow through on those and actually properly support carers.”

Ms Vance said she would like an independent ‘one-stop shop’ for carers where they can access advice and legal support.

She said it is important that carers “know what their rights are and what is truly appropriate for the needs of themselves as a carer and also for the needs of the person that they look after”.

Ms Vance also said there needs to be a “cultural shift” in how patients’ families are consulted about their loved ones’ care.

“More often than not, we're not included in those conversations. We're told ‘you do this, you do that’,” she said.

“It's not collaborative.”

The Detail asked all five trusts - the Western, Southern, Northern, South Eastern and Belfast - and the Department of Health about serious pressures in the care system.

A spokeswoman for the Southern trust said it had been “another particularly challenging Christmas and New Year period across our services and staff have continued to do their very best to protect the safety and dignity of all patients in our care”.

All five trusts said patients who are medically fit to be discharged should go home because hospital stays can lead to greater infections and a loss of muscle strength.

A spokesman for the Belfast trust said it discusses care support with patients and their families “to determine what may be available to them.

“We make every effort to provide families with up to date information regarding discharge pathways and commissioning of services so they can make informed decisions at the time of discharge,” he said.

“We understand not all family or carers can provide care due to their own commitments or health issues.”

His comments were echoed by all the trusts.

A spokeswoman for the Northern trust said: “We work closely with our patients and their families to explore what support is required and what is available in the community – while we cannot always provide a first choice of placement or one that is near home, we ask that all options are considered even on a temporary basis until a more suitable option is found.”

A spokeswoman for the Department of Health said it is working on social care reforms and recognised that better “terms and conditions” for social care staff were key.

“The Department of Health also acknowledges the vital role played by informal/family carers in our society and is committed to raising awareness of the role and ensuring carers continue to be supported and valued,” she said.