A win for patient involvement: Congenital heart disease standards in Scotland

• Written by: Dr Liza Morton —
• Published: 14th February 2024

Over 12 million people live with Congenital Heart Disease globally with a population of 20,000 in Scotland.

Living with a lifelong heart condition can be challenging enough without having to fight through the medical system. As such, the publication of National Healthcare Standards in Scotland for Congenital Heart Disease (CHD) marks a significant step forward for this growing population. CHD, the most common congenital condition, affects1 in 125 babies and includes a wide range of heart conditions present from birth. Thanks to medical advances, over 90 percent of babies born with CHD will survive to adulthood; an increase of more than 70% since the mid-20 century.

I was fitted with a pacemaker at 11 days old, in a world first in 1978, at Glasgow’s Yorkhill Hospital. Currently fitted with my 11th pacemaker, I require lifelong care for complex pacing. Like many people with CHD, since reaching adulthood, I’ve found it challenging to access the specialist care I need, particularly during pregnancy and medical emergencies. A life-threatening incident in 2010, when I was sent away from A&E by staff who did not believe that my pacemaker was failing, prompted me to petition Holyrood for healthcare standards in 2012. I was invited to present evidence to the Public Petitions Committee ending up on BBC Scotland and STV News.

Little did I know how consuming this journey would be, lasting over a decade. Initially I was delighted when, in response to the petition, NHS Scotland’s National Service Division (NSD) commissioned the Scottish Congenital Cardiac Network (SCCN).  It was disappointing when the network was decommissioned two years later but the Scottish Congenital Cardiac Advisory Board was formed to complete the standard development work.  However, in 2018, the finish line in sight, our efforts were pulled and Healthcare Improvement Scotland (HIS) was tasked with re-starting this work. It was hard to keep the momentum going. Voluntarily committing my time, as a patient representative throughout these changes, required me to draw from traumatic personal experience whilst dealing with health politics in a context of ever-changing faces. Throughout, my family, friends, the CHD community and late Michael Cumper, past Chair of The Somerville Heart Foundation, provided support. I was also encouraged by the healthcare professionals who demonstrated unwavering commitment to this work. Despite the challenges, we had to keep our hard-earned seats at the table, else CHD risked falling off the health agenda.

We kept voicing the facts; CHD is very different to acquired/coronary heart problems, yet, public health messaging and healthcare policy consistently neglects this. CHD is incurable and lifelong specialist care is internationally recommended. Yet, almost half of the Scottish CHD population are ‘lost to care’ leaving them at risk of developing more serious cardiac problems and premature death. All too often GPs, medical staff in A&E and allied health professionals do not know what to do with us. Despite being the most common congenital condition, with a quarter of babies with CHD requiring medical intervention in the first year of life, newborn babies are not routinely screened for CHD. In addition to normal life challenges, CHD can impact on education, relationships, parenting, body image, social inclusion, work and finances and involve physical symptoms and limitations, medical tests and invasive procedures. Lifetime prevalence of anxiety, depression and post-traumatic stress is two-three times higher than the general population, yet, psychosocial support remains poor.

Overall, working with Healthcare Improvement Scotland (HIS) has been a positive experience, despite further delays brought about by the COVID-19 pandemic. The newly published standards aim to ensure that consistently high levels of care are offered to everyone with CHD. Some key recommendations include enhanced detection rates in unborn babies, improvements during transition from paediatric to adult care, better emergency and pregnancy care and education of non-specialist healthcare professionals. I was particularly passionate about including a standard on ‘Mental Health and Emotional Wellbeing’ to promote a psychologically informed approach to healthcare provision.

These standards are a long time coming. The odds are that someone you know is living with CHD.  My hope is that these standards improve care by engendering trust, safety and patient empowerment to enable people with a lifelong heart condition to live as normal a life as possible.

You can access the standards here: CHD Healthcare Standards

Liza is a Counselling Psychologist and Lecturer in Applied Psychology at Glasgow Caledonian University. Liza co-authored of Healing Hearts and Minds: A holistic approach to coping well with congenital heart disease published by Oxford University Press, 2023.

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