People providing unpaid care for sick or disabled family members or friends in Northern Ireland are living with ‘shocking levels of poor health’ as they struggle to access support services or breaks from caring, new research from Carers NI has shown.
In a new survey of over 1,600 unpaid carers across Northern Ireland, more than one in four (27%) described their mental health as bad or very bad, while 20% said the same about their physical health. Support to help look after themselves is out of reach for many carers, as over a third (40%) hadn’t had a break from caring during the last year and 23% said the support services in their area did not meet their needs.
The survey also showed that carers’ health is worsening due to the cost of living crisis, with nearly 70% saying that rising bills were having a negative impact on their physical or mental health. Carers described the experiences of depression, anxiety, stress and loneliness that are driven by their caring roles.
Tracey Gilliland lives in Portadown and provides care for two disabled sons. She said:
“Since the pandemic began, families like ours have been all but forgotten, frozen in time and with little-to-no support. Carers are still having to ask for the full return of much-needed day care and respite services and it feels like we’ve been left to paddle our own canoes with no help.
“We are the forgotten army who work 24/7, 365 days a year in the background. No one knows our struggles. The many sleepless nights and exhaustion during the day. The impact on carers’ mental health. The isolation that families like us experience that no one else sees.
“If anything, the pandemic has shown how carers reached out to other carers, how we support each other in any way we can.”
David Humphreys is retired and lives in Carnmoney. He provides unpaid care for his wife, who is living with Multiple Sclerosis (MS). He said:
“I receive absolutely no support services to help me look after her. I’ve never been offered a care package and on the occasions that I’ve asked for help, nothing has changed. It’s the usual story of staff shortages and lack of budget. I haven’t heard from our social worker in five years and when I started the process of doing a Carer’s Assessment, the pandemic began and put everything on hold. I haven’t heard a word about it since.
“I’m left to deal with everything at the same time as managing my own health issues. I have arthritis, diabetes and mobility problems in one of my legs, so sometimes I need to use a walking stick to get around. Caring takes its toll, but what else can I do but just plough on? My wife needs care and there is no one else to do it.”
The survey also asked carers about their top support needs, with nearly half (49%) identifying more breaks or time off from caring and the same proportion asking for more support from the health service or health professionals.
Carers NI are calling for a legal right to social care support for all unpaid carers, the appointment of an independent Carers’ Champion to advocate for carers to government, and wider transformation of the health system.
Craig Harrison, Policy and Public Affairs Manager for Carers NI, said:
“Unpaid carers across Northern Ireland are living with shocking levels of poor health and, time and again, they’re being let down by local support services. We’re seeing so many carers driving themselves into the ground, physically exhausted, in a constant state of anxiety and with little opportunity for a break or hope that the situation will ever improve.
“The Covid-19 pandemic only added more pressure to a social care system that was already falling apart. Add in the devastating health impact of the cost of living crisis and our carers are facing a perfect storm. We need the Stormont institutions restored so that long-promised reform of the social care system can finally be delivered and our unpaid carers given the support they so desperately need. This carer health emergency will only get worse and worse if we fail to act.”
Caroline Shanks lives in Greenisland. She provides care for her Mother, who is living with Alzheimer’s disease, while working full-time. She said:
“There isn’t really anyone else to help look after Mum, so everything falls onto me. The opportunity to get a break from caring is really rare and this past year has been especially difficult. Juggling full-time work while caring for Mum can be a nightmare. Sometimes I was working all day, going to Mum’s house afterwards and then not getting home until late in the evening.
“On a good day there is nothing that I can’t deal with, but on the worst days I have just wanted to run away, because it all feels like too much to deal with. I broke down on the phone to the social worker because I just felt so overwhelmed and everything had welled up inside of me. The only way I can describe the situation is that I go to bed thinking about caring for Mum and I wake up thinking about it. The impact that can have on your mental health is massive.”
Notes to editors
All data is from Carers NI’s State of Caring survey 2022, which was carried out between July-September 2022 and completed by 1,648 unpaid carers. The full survey report is available here.
- There are over 290,000 people providing unpaid care to a sick or disabled family member or friend in Northern Ireland – one in 5 adults in the local population.
- Unpaid carers save the Health and Social Care system in Northern Ireland an estimated £4.6bn each year in care costs.