This article was first published on healthandcare.scot

A Scottish woman who underwent pioneering pacemaker surgery as a baby is to be at the centre of a project to raise standards of care for people with congenital heart disease.

Dr Liza Morton will represent the views of patients on a standards development group set up by Healthcare Improvement Scotland as part of the Congenital Heart Disease (CHD) Standards Project.

The 23-strong expert group, cochaired by a paediatric cardiologist and a consultant cardiologist, will publish a set of standards for levels of person-centred care and treatment that people with CHD can expect from the NHS in Scotland.

Dr Morton, a counselling psychologist and the world’s youngest pacemaker baby, spoke with healthandcare.scot in December about the medical trauma faced by many children living with a long term condition like CHD and her work to raise awareness.

In a series of articles to mark the publication of her book Healing Hearts and Minds which offers strategies to help people thrive while living with CHD, she told healthandcare.scot that advances in cardiac science have not been matched with increased consideration of patients’ wellbeing:

“While there's been a lot of pioneering innovation in medical care, we still haven't necessarily thought about the impact psychologically and emotionally of living dependent on that care lifelong. That part has fallen behind.

“In the 1940s and 50s, 80% of us would not survive to adulthood. Whereas now, 80% will. So now, we have this growing adult population living with congenital heart disease – a hidden population, around half of whom will experience anxiety, depression or PTSD.”

Congenital heart disease is the most common congenital abnormality, affecting approximately 1% of babies. A quarter of babies with congenital heart disease require medical intervention in the first year of life.

Dr Liza Morton underwent pioneering surgery to be fitted with a pacemaker in a world first operation of its kind at Glasgow Yorkhill Hospital in 1978, 11 days after being born with an abnormal heart rhythm.

Now on her 11th pacemaker, Dr Morton says the standards must focus on the need for lifelong specialist care for the 20,000 people living in Scotland with the congenital condition:

“Babies born in the 1940s with congenital heart disease had a 20% chance of surviving into adulthood whereas today that survival rate is 90%. However, approximately half of the babies with CHD are still being discharged before their need for specialist lifelong care is recognised, which means they don’t have access to the specialist services that could help them.

“By setting healthcare standards, we can significantly improve care by engendering trust, safety and patient empowerment, and that’s why I’m delighted to be involved with Healthcare Improvement Scotland’s development group to create standards for CHD and work with them to enable people with this condition to live as normal a life as possible.”

The Congenital Heart Disease Project development group will meet regularly over the coming months, with the aim of publishing a full draft of the new CHD standards for consultation in July.

Rachael Hewitt, Programme Manager on the CHD standards work at Healthcare Improvement Standards, says she is excited by the passion and commitment of all members of the development group:

“We are excited to be part of the ground-breaking work taking place in Scotland around raising standards of care for people with congenital heart disease.

“The development group working on this is passionate and committed with a wealth of experience and it is a privilege to work with people like Liza who has been so willing to share her unique and personal experiences on how CHD has impacted her life.”