Congenital Heart Disease Standards blog: February 2024
Bridging the gap between physical and mental health
Liza Morton was a driving force in the development of national standards for congenital heart disease (CHD) care and services in Scotland. As part of the Healthcare Improvement Scotland team that developed the standards, Liza was passionate about the importance of supporting the mental health needs of those who live their lives with CHD. In this blog, Liza talks about her own experiences and explains why awareness and support for mental health is so important to the care that people with CHD receive.
I was born with a heart condition known as complete heart block. This means the electrical system in my heart does not work properly. I was fitted with a pacemaker at 11 days old – a world first in 1978 – at Glasgow’s Yorkhill Hospital. This was during a time of rapid innovation in paediatric cardiology. During this time, pacemakers developed from fixed-rate, bulky ‘batteries’ with temperamental leads to the smaller, computerised physiologically-responsive pacemakers of today. By the age of seven, I’d had my ribs broken five times to fit new pacemakers to my heart. I needed open-heart surgery to fix a hole in my heart at 13. Around this age, I was fitted with a variable rate pacemaker enabling me to be more active. I am currently fitted with my 11th pacemaker and require specialist care for complex pacing.
Although I have always lived as full a life as possible, growing up with a heart condition has impacted every aspect of it. My childhood medical experiences occurred during a time when healthcare was survival focused. Understanding about the psychological impact of childhood pain, distress, and illness was limited.
“Lifetime prevalence of anxiety, depression and post-traumatic stress is as high as fifty percent for people living with CHS. This is 2-3 times higher than the general population.”
While I’d always experienced nightmares about being in hospital. They became more regular in my mid-teens. During waking hours, cues such as the smell of toast or disinfectant triggered flashbacks about my hospital experiences. I often felt tense, prepared for the next medical emergency. Or exhausted from navigating my condition while trying to live as normal a life as possible. Eventually, I was diagnosed with post traumatic stress. But it wasn’t until my early 30s that I found appropriate support.
As a result of this lifetime of effects both physical and psychological, as a patient representative on Healthcare Improvement Scotland’s Congenital Heart Disease (CHD) standards development group, I was passionate about including a specific standard on ‘Mental Health and Emotional Wellbeing’.
Why we need a psychologically informed approach to healthcare
Adverse childhood experiences (ACEs), including serious childhood illnesses such as congenital heart disease (CHD), are increasingly being linked to poor physical and mental health and diminished life opportunities. Navigating life with a serious chronic health condition can involve facing a multitude of additional hurdles. This is in addition to the normal challenges of life, potentially impacting on:
- education
- sexual health
- relationships
- parenting
- body image
- social inclusion
- career aspirations
- finances
It often involves physical symptoms and limitations, medical tests and invasive procedures. Social support, one of the most protective factors for our mental health, can be limited. This is because often our peers are not going through the same challenges. Accessing specialist care in adulthood can be challenging. Yet without this specialist provision, people with CHD are at a much higher risk of developing more serious cardiac problems and even premature death. Such difficulties accessing specialist care motivated me to submit a petition to the Scottish Parliament in 2012. It asked for national healthcare standards.
Lifetime prevalence of anxiety, depression and post-traumatic stress is as high as fifty percent for people living with CHD (Nitloudi et al, 2021). This is 2-3 times higher than the general population. Parents of children with CHD are also at increased vulnerability to mental health difficulties (Helfricht et al, 2008).
In light of this, the importance of healthcare provision adopting a psychologically-informed approach that supports emotional wellbeing across the lifespan is clear.
“My childhood medical experiences occurred during a time when healthcare was survival focused. Understanding about the psychological impact of childhood pain, distress, and illness was limited.”
Mitigating and treating medical trauma
It is unusual to be exposed to the same trauma repeatedly throughout life, knowing that you’ll endure it again. Yet this is often the case for those of us living with a serious lifelong illness. Hospital care could be better shaped to improve patient outcomes by providing:
- play therapy for children
- supporting mental health for the family
- facilitating the supportive presence of loved ones
- providing emotional preparation for surgery and procedures
- addressing disempowering aspects of healthcare provision such as backless hospital gowns
- limiting waiting across the patient journey
- challenging forceful holding of children during medical procedures
- facilitating access to medical records
- working towards a more healing hospital environment
It is also vital that healthcare practice promotes the soothing presence of parents throughout the hospital experience. During infancy, a strong attachment to our parents is essential for healthy development. It enables us to form the capacity to self-soothe and build relationships. Children need their parents when they are unwell. A growing body of studies demonstrate this. With the likelihood of repeated hospital visits and procedures for people with conditions like CHD, this need is amplified.
Compassionately recognising and supporting the additional challenges
We are relational beings. During adverse experiences we seek safety and comfort in others. Medical staff can play a large role in ensuring this happens for people with CHD.
Consistency of care from familiar medical staff, and assurance that healthcare providers recognise the limits of their competencies, and will consult with specialist colleagues as required, can help build trusting relationships. Providing a safe space to validate and explore a normal emotional response to the challenges we can face, working in partnership with us, acknowledging our lived experience, empowering us to make choices about our care, providing accessible information, taking concerns seriously and promoting dignity, are all essential to healthcare literacy and self-management of a lifelong condition. Routine screening of mental health and referral to further specialist support is also important.
In turn, clinical supervision for healthcare professionals from a team psychologist could prevent:
- vicarious trauma
- moral injury
- compassion fatigue
- burnout among healthcare professionals
Looking forward
There are many ways in which healthcare could be reformed in light of recent psychological understanding to improve the patient experience. My own research, practice and activism as a Counselling Psychologist have been motivated by a passion for improving psychological wellbeing. Especially for people like myself living with a serious, lifelong medical condition. The standards developed by Healthcare Improvement Scotland have taken a momentous step towards improving the quality of life for people living with CHD. They explicitly include ‘Mental Health and Emotional Wellbeing’ in the recently published standards. I’m honoured to have been part of this work.
Liza Morton is a Counselling Psychologist and Lecturer in Applied Psychology at Glasgow Caledonian University. Liza co-authored the book ‘Healing Hearts and Minds: A holistic approach to coping well with congenital heart disease’ published by Oxford University Press, 2023. Liza was a patient representative on the group that developed our Congenital Heart Disease (CHD) standards.