7 June 2026 News
Nearly half of unpaid carers feel their caring role isn’t understood or valued by their community, according to new research released during Carers Week.
Unpaid carers of people with motor neurone disease (MND) provide vital support to the 5,000 people across the UK living with the disease, helping them maintain a better quality of life while reducing pressure on health and social care services.
The findings revealed:
- 44% of carers said they did not feel their role as an unpaid carer is understood and valued by their community
- 36% of current and former carers who felt organisations or services were not carer friendly said this had impacted their physical or mental health
- 35% of carers said it made it more difficult to look after the person they care for.
More than 4,000 members of the public took part in the poll, which also found carers often find it difficult to participate in their communities. Nearly a quarter (23%) of current and former carers said they had been unable to take part in local groups or activities while caring and a fifth (20%) said they had been unable to maintain a healthy lifestyle.
Matt Fry is a carer for his wife Gill, who has MND. He said: “What people don’t realise about being a carer is that I’m on call twenty-four hours a day. There’s no switching off. There’s no handbook, no manual or job description. You’re just expected to figure it out. There’s no real understanding of how completely it takes over your life. How everything revolves around the person you’re caring for.
“It can be challenging and I don’t think people really appreciate what caring involves. Carers really are undervalued.”
Every day, 12,000 people take on unpaid caring responsibilities. Without the right support, this can affect their ability to look after their own health and wellbeing, as well as household finances, maintain employment or education or take part in social opportunities.
Carers UK and charity supporters the Motor Neurone Disease Association, Age UK, Carers Trust, Rethink Mental Illness, the ME Association and the Lewy Body Society are inviting communities to share good practice, and to help raise awareness of the importance of carer-friendly communities.
Jennifer Bedford, Head of Information and Professional Development at the MND Association, said: “Every day matters for people affected by MND. We support Carers Week because it is an important and specific annual opportunity to recognise and celebrate the incredible work that unpaid carers do every day. Whether it’s caring for a loved one, a friend, or a neighbour, their dedication often goes unseen but it should never go unappreciated.
“We’re taking part in Carers Week to raise awareness, to say thank you, and to stand with carers who give so much of themselves to support others.”
Helen Walker, Chief Executive of Carers UK, said: “Our findings reinforce the importance of Carers Week in shining a spotlight on unpaid care and driving greater awareness, recognition and support.
“When unpaid carers are left without the support they need, there are real consequences for their health, wellbeing, finances and ability to stay connected to everyday life.”
Each day of Carers Week will focus on different focus themes around Building Carer Friendly Communities:
- Monday - Health
- Tuesday - Social Care
- Wednesday - Work
- Thursday - Education
- Friday - Business and services
- Saturday - Community
- Sunday - Reflections on Carers Week.
Members of the public and leaders in society can show their support by adding their name to a digital wall on the Carers Week website.
Our support for carers webpage includes information about self-care and wellbeing activities and links to our wide range of resources and other support for unpaid carers of people with MND or Kennedy's disease.
Find out more about Carers Week which aims to awareness of the carers' issue and everything unpaid carers do for their families and for society.