The Health and Social Care Committee launched an inquiry into 'improving access to support for unpaid carers'.
As part of the inquiry, the Committee wanted to hear from carers directly.
Through interviews and focus groups, the Senedd’s Citizen Engagement Team gathered insights from unpaid carers across Wales. Their stories reveal both the challenges they face and the solutions they believe could make a real difference.
Every day, thousands of unpaid carers in Wales provide essential care for loved ones—often at great personal cost. Their contribution saves millions for public services, yet many carers feel overlooked and unsupported. As one carer told us:
“I feel like I’m in the middle of an ocean and I can’t get out.”
What are the main barriers to support?
Carers spoke openly about their experiences. While many described moments of pride and fulfilment, they also highlighted barriers that make caring harder than it needs to be.
- Limited Awareness of Support
Many carers didn’t know what help was available. Carer’s Assessments, designed to identify support needs, were often unheard of or inaccessible.
“The amount of people who don’t know that they need a carers assessment is incredible.”
Some carers were managing complex medical tasks without training:
“Nobody teaches you how to administer morphine… I’m literally piecing it all together from ChatGPT" - Support That Doesn’t Fit
Services often failed to reflect the diversity of carers’ needs. Solo carers felt isolated, while those caring for multiple people struggled to access respite that worked for their circumstances.
“Help isn’t there… when you get there, the help isn’t responsive to your needs.” - Feeling Undervalued
Carers spoke about stigma and misunderstanding. Carer’s Allowance was described as “a pittance,” and many felt their voices weren’t heard in decisions about care.
“Get rid of the ‘unpaid’ part of being a carer.” - Barriers to Carer’s Assessments
Assessments were often described as “tick-box exercises.” Some carers were turned away or told they weren’t eligible, even when struggling emotionally and financially.
“Because I’m well paid and middle class, I was told it ‘wasn’t for me.’” - Difficulty Getting a True Break
Respite care was scarce and sometimes unsafe. Carers delayed their own health needs because cover wasn’t available.
“I need respite to just be ill.”
Even when respite was offered, carers worried about the quality of care:
“You struggle with the uncertainty of knowing the phone could go any minute… Even with respite in place, it’s still really stressful.” - Systemic Challenges
Language barriers, inaccessible forms, and poor communication made navigating support overwhelming.
“The DLA form takes six weeks to complete – the devil wrote those forms.” - Respite Care was considered a postcode lottery
When asked what the availability of respite care was like for them, participants from across all five Senedd regions, mostly told us the same thing:
“None… simple answer. There’s nothing there for you.”
Respite options were limited, underfunded, and unevenly distributed. Rural carers faced extra challenges, and shortages of trained Personal Assistants meant even eligible carers couldn’t access breaks.
What Unpaid Carers Want to See
Participants shared practical ideas for change, including:
- Carer Advocates to guide people through services.
- Flexible respite options and community hubs for connection.
- Annual health checks for carers.
- Public awareness campaigns to challenge stigma.
- Professionalising care work with better pay and training.
Conclusion
Unpaid carers are asking for fairness, dignity, and support that works. As one participant put it:
“Life has become immeasurably complicated… but I keep a person alive. On my own.”
The full engagement report will be available on the Committee inquiry page shortly.