New pilot study supports adults with Congenital Heart Disease to exercise with confidence

19th February 2025

A 12-month pilot study, backed by £100,000 funding from the British Heart Foundation, is supporting adults with Congenital Heart Disease to exercise. Developed by the Adult Congenital Heart Disease (ACHD) Service, this programme is the only one of its kind in the UK, uniquely integrating nursing and psychological support alongside physiotherapy guided bespoke exercise sessions.

Launched in September, the study aims to overcome multiple barriers preventing adults with Congenital Heart Disease—heart conditions present from birth—from engaging in physical activity. These barriers include practical challenges, such as restricted access to gyms due to the condition, as well as psychological obstacles, such as fear of exercise and lacking confidence in how to exercise safely.

After completing the sessions one patient said: “The classes have made me realise that I am able to participate in exercise more, and make more time for myself.”

Anna McCulloch, Lead Consultant Clinical Psychologist within the ACHD team, explained: “It's really important that people exercise and move to a safe level because it's a big predictor of physical health, but obviously also mental health. But what we were seeing frequently in clinics and during psychology appointments was that people knew they should exercise but were too afraid to or didn’t feel they had the skills to do it.”

ACHD Clinical Nurse Specialist Sarah Finch said: “The advice given to our patients about health and wellbeing has changed considerably over the decades. Often, when our patients were children, they were told to be cautious with exercise. Many became anxious about physical activity because of the advice they had received, the way it made them feel, or their parents may have wrapped them up a little in cotton wool just to keep them safe. It’s about breaking that cycle.”

Before starting the exercise sessions, participants are assessed by a nurse, physiotherapist, and psychologist. Each gym-based session is prescribed by the Physiotherapy team and supported by Nursing and Psychology. It includes a mix of cardiovascular exercise, strength training, and balance exercises and is followed by peer support, psychoeducation, and a mindfulness session delivered by the Psychologist.

ACHD Clinical Nurse Specialist Kindre Morgan said: “In the initial sessions, we do blood pressure checks at the beginning and end. During the session, we monitor heart rate and oxygen saturations with a finger monitor. As the programme progresses, patients start to regulate themselves. We’re always there as a backup.

“The Physiotherapy team individualise the exercise prescription according to the person’s ability and the patient controls how much they can do. So, if they feel like they're getting too breathless, we would advise them to continue exercising but reduce the intensity. But then we also teach them how to recognise that they may be not putting themselves into the ‘training zone’, and suggest they could push themselves a bit harder depending on their breathing, perceived level of exertion and how they're feeling.”

After completing the six-week programme, participants receive follow-up support from the nursing team and a post-assessment.

Anna said: ““People are showing significant improvements in their physical health, improvements in their quality of life and significant increases in their confidence. They are benefitting from peer support and forming WhatsApp groups. Some people have joined other classes because they've been okay to move on to the next phase. Other people are buying basic equipment for their house or have just had a shift in attitude that they can move more.

“It’s much bigger than exercise. It’s about developing that self-belief that you can learn and develop, and that you can trust your body.”

One patient said: “After the session I feel happy, hopeful and bonded with the group.”

ACHD Physiotherapist Hannah Davies added: “On completion we are able to safely refer patients to exercise sessions in the community such as the National Exercise Referral scheme and Private BACPR [British Association for Cardiovascular Prevention and Rehabilitation] Level 4 exercise instructors across Wales. This creates better links for patients with ACHD to engage in physical activity in the longer term and feel confident to do so.”

Rhodri Thomas, Head of British Heart Foundation Cymru said: “It is very exciting to see this innovation from the Adult Congenital Heart Disease Service progress and support people in south Wales living with ACHD. With support from BHF Cymru, hopefully the team at Cardiff and Vale University Health Board can continue to make a difference in supporting ACHD patients to grow in confidence and achieve their health goals.”

The exercise sessions are based in Cardiff but are open to congenital heart disease patients across South Wales. Recognising that not all patients can attend in person, the team is also preparing to deliver an online version of the programme to reach a wider audience.