Carer’s experience helps shape improvements in support for unpaid carers

Tracey and her husband Brian were enjoying an active life together, regularly travelling, attending bike rallies and visiting places such as Porthcawl and Builth Wells.

Everything changed suddenly when on holiday Tracey returned home from a quick trip to the supermarket and recognised the signs that Brian was having a stroke. Having supported him through strokes before, she knew exactly what to look for.

“I only nipped to Morrisons, and I came back and I could see his face had drooped,”Tracey explained. “I said to him, ‘smile for me,’ and then I took him straight to the hospital.”

Brian’s condition quickly deteriorated, and Tracey described the following months as overwhelming and frightening, particularly when he was discharged home after six months in hospital. The emotional pressure of becoming a carer was significant, as she took on responsibilities such as managing medication, feeding equipment and making difficult decisions while coping with her own emotions.

“He was my carer before this,” she said. “Suddenly all this equipment was coming into the house and I was panicking thinking, ‘How am I going to cope? But two weeks in, I had a proper meltdown…I was thinking, ‘am I doing enough? Am I doing things right?’ It was really scary in the beginning.”

Following discussions with the stroke team, the patient experience team at Cwm Taf Morgannwg University Health Board (CTM UHB) met with Tracey to hear her story and worked closely with her to ensure her voice and perspective were fully heard.

Her experience highlighted the importance of providing timely information about support for carers, both during hospital stays and after discharge, as well as the financial pressures and isolation carers can face.

“The Stroke Association have been marvellous since he’s come home,” Tracey said.

“But while I was in hospital with him, nobody told me what support was out there for me. I didn’t know there were phone lines or people who had been through the same thing… Brian had full support in hospital. I can’t fault that. But you feel alone. You feel out there and you’re alone.”

In response, David Watkins, Corporate Carers Lead at CTM UHB – a role funded through the Regional Integration Fund – has collaborated with staff and a senior nurse in the ward to lead improvements to how carers are supported during and after hospital stays.

David said:
“Tracey and Brian’s story has reinforced the importance of recognising carers as partners in care and ensuring they feel informed, supported and involved throughout the patient journey.

“While Tracey’s experience highlighted areas where improvements were needed, it has also become a powerful example of how listening to carers’ voices can directly shape service improvement and strengthen support for unpaid carers across the region.”

Improvements are now being implemented across the region, including the pilot of a Carers Passport, better identification of carers at admission, and improved access to support and information.

. Work is also underway to strengthen support from the point of diagnosis and to establish carers’ cafés within hospital settings.

A positive outcome from this experience has been Tracey’s continued involvement in supporting others. This includes attending a carers’ café in the hospital where she shared her and Brian’s story and learnings with patients and carers.  Tracey now works with The Stroke Association, offering telephone support to patients and carers facing similar situations.

Although the experience was challenging, Tracey found sharing her story helpful and cathartic, particularly knowing it could support others.

Tracey said:

“If I can help one person get through it, it’s worthwhile. What you’re feeling is normal. There is no right, there is no wrong. Take a day at a time, and if you can’t do that, take an hour at a time. And you’ll get through it.”

This Carers Week (8th-14th June), organisations across the region are providing infomation, support and guidance to carers. Please contact your local community groups to find out more.