Hello, I’m Lowri and I’m a PPV group rep having joined when the group was first established in 2020. I’m an adult congenital heart patient and live in rural North Wales and I am a long-standing advocate for efforts to support CHD patients. I have recently been re-elected Governor of Alder Hey Children’s NHS Foundation Trust, something I never envisaged when I was a patient there over 18 years ago . I was very fortunate to have been cared for by the same consultant for 33 years – firstly at Alder Hey and then at his adult clinic at Liverpool Heart and Chest, where I’m still a patient. I’m also a patient at the Royal Brompton Hospital in London. In 2003 I spent a very brief period as a patient at Great Ormond Street due to endocarditis.
I am the first patient to undertake a Fellowship with the Bevan Commission where I helped develop an electronic patient passport which will allow clinicians dealing with an emergency admission of a CHD patient, instant digital access to their medical history. We were invited to present the concept at the Senedd (Welsh Government) and it is now available for anyone in the UK . In addition , I write about my experience for the British Journal of Cardiac Nursing and regularly attend conferences run by the Somerville Heart Foundation where I have made some great friends.
We are very fortunate to have a great CHD service here in the North West including colleagues who are educating the next generation of clinicians in the complexities of caring for CHD patients. I’m passionate about improving services for all patients and their families and will bring all that I’ve learned to the PPV.