Over 125,000 people became unpaid carers for a sick or disabled family member or friend in Northern Ireland during the period 2010 to 2020, new research has revealed. [1]

Published by Carers NI on Carers Rights Day (24 November) and carried out by the Centre for Care, University of Sheffield, the research means that around 240 local people take on unpaid caring roles each week on average. 

The charity says unpaid carers are having to make up for gaps in Northern Ireland’s health and social care system and called for a step change in the way they’re supported by the government and Health Trusts.

Helen Todd lives in Bangor and provides unpaid care for both her husband David, who is living with brain cancer and an acquired brain injury, and her son Josh, who has Type 1 Diabetes. She said:

“I suddenly became a carer for two people at the age of 35 and my health has been massively impacted by caring. Since 2017 I’ve had just three night’s sleep on my own terms. Just three nights when I haven’t had to set alarms to check on Josh overnight or help David. I work full time alongside caring to make sure we can afford the bills and this all takes its toll. I’m exhausted and lucky if I get thirty minutes to myself at the weekend to decompress. My mental health has really suffered and I’ve experienced depression and grieving, both for the life I had planned before caring and for my husband, who is still alive but isn’t the man I married.  

“In the last five years I’ve had access to respite just three times and only because I made a nuisance of myself to the Trust. This is the recurring theme of my caring experience. Every step of the way I’ve had to fight to get support and so often when you’re looking for help, the path is blocked by a lack of funding, bureaucracy or processes in the health service that don’t have the service user at their centre. I’ve been at breaking point and if I collapse, what happens then? There is no contingency.”

Craig Harrison, Policy and Public Affairs Manager for Carers NI, said:

“There is an astonishing number of people taking on unpaid caring roles each week in Northern Ireland and, far too often, they’re having to sacrifice their own wellbeing and quality of life to do so. Unpaid caring is linked to poorer health, weaker household finances and worse life prospects, but many people step up because their loved ones need help and can’t get by with the patchy health and social services available to them.

“The reality is that unpaid carers are propping up Northern Ireland’s health service and preventing our hospitals, GP surgeries and care homes from total collapse. Public services would be entirely over-run without unpaid carers, so much greater support is needed to help them care safely, take regular breaks from caring and lead lives of their own. Reforming health and social care services and providing better financial support through the welfare system are two important starting points, but neither can be achieved while political stalemate remains in Stormont.”

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Notes to editors  

• The analysis was undertaken by researchers at the Centre for Care. The authors gratefully acknowledge the support of the Economic and Social Research Council. The data analysed in this report is from the UK Household Longitudinal Survey (UKHLS), also known as Understanding Society, and calculated using data from 2010-2020. The sample includes all people who participated in the survey in any of those years.
• 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.