Health changes that stick: Rhys’ heart health journey

Rhys is one of those outgoing, bubbly characters who can make a dull day interesting for the people around him without even trying. He lives independently in his own bungalow with support from United Response and his wide circle of family and friends. Rhys loves music and being social, and a good weekend often involves a visit to a local pub or karaoke bar.

Rhys is well known in United Response because he is employed as a Quality Checker to interview people looking to join a support team. Rhys loves to keep his support workers on their toes with his sense of humour and pranks.

No laughing matter

It was certainly no prank recently though when Rhys started to feel really unwell with vomiting and shortness of breath, and reported into his local A&E.

He was initially misdiagnosed and told it was just a problem with digestion. One week later, the symptoms hadn’t changed so he went back to hospital with a support worker. The hospital initially kept him in, but then sent him home with an appointment for the next day. It was at this appointment that Rhys was admitted to the hospital ward, and he has since been diagnosed with heart failure.

This was a big shock for Rhys and all his support network.

Although the hospital and GP staff were helpful and friendly, what was particularly disappointing for Rhys was that he didn’t feel that hospital staff listened to him or his support staff particularly well. Despite being unwell for weeks without explanation, it was not connected to a heart condition until much later in the process.

“Friday pie-day”

While Rhys continues to see consultants and get tested, he has received some advice that changes to his diet and lifestyle could make a really big difference to his heart health.

“I want to say thank you for supporting me in everything, and helping me get on better eating healthy.” Rhys said “Staff, family and friends have been amazing.”

“The most important thing for me is to look at traffic light symbols when I’m out shopping to see what is healthy” Rhys explained. “I need to make sure I’m not having too much fat and salt. So if something is red, I look for a swap. For example, I really liked buying peanuts for a snack. But I worked out that monkey nuts are a lot healthier, and are pretty tasty. I’ve also given up my vape, which I’m so proud of.”

Service Manager Chris Lacey has been working hard with Rhys and the support team to support everyone through changes to medication and lifestyle, but particularly to Rhys’ diet.

“Lots of heart health advice references ‘moderation’ – which makes sense in theory.” said Chris. “But when it comes down to it, what does ‘moderation’ really mean? Working in partnership with the community heart health nurse really helped with this. We agreed together with Rhys that “Friday pie-day” really made sense. This means that every other week, pie and chips for dinner can still be a treat to look forward to, but that having it more often that didn’t fit with the plan to get healthy.”

My team have also been fantastic through this tricky period. There has been lots of appointments at short notice and lots of new information to process. But above all, I’m touched that my colleagues have gone above and beyond to visit Rhys in hospital to make sure he knew he wasn’t alone in all this.”

Change that sticks

Alison Worsfold, United Response’s Head of Healthcare, is no stranger to some of the challenges that people with learning disabilities can face when they need hospital care.

“The CQC “Who I am Matters” report made it clear that people with learning disabilities don’t always get the care in hospital that they have the right to expect. Outcomes are much better when specialist staff support their non-specialist colleagues to provide care, or when staff have the right experience themselves.”

“Long term conditions are all about making sustainable change. I am super proud of Rhys and his support team for the way they have worked together to take on new information and make changes. We wish Rhys the very best for his future.”

Rhys’ top tips for someone working on getting healthy: