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Congenital heart disease (CHD) is the most common birth defect with a worldwide prevalence of 1 in approximately 125 live births. Any structural or electrical heart problem that is present from birth is considered CHD. As such this diagnosis comprises a variety of conditions which vary widely in prognosis, morbidity and mortality.
Medical and surgical advances mean that 90% of such infants will now reach adulthood compared with just 20% in the 1940s. Today’s adult survivors have often depended on pioneering medical treatment with an uncertain prognosis. Further, adult care has often not evolved in time to meet this growing population adding to feelings of uncertainty.
Research suggests that being born with a heart condition can increase the risk of depression, anxiety and posttraumatic stress disorder. This is perhaps not surprising given the extraordinary challenges living with a serious lifelong medical condition can bring such as physical limitations, uncertainties about treatment, surgeries, hospitalisation, living with an implantable device, missed schooling and feeling different. Yet, these mental health difficulties are not inevitable and improved understanding and support could help to better mitigate against them.
My interest in this field is grounded in lived experience. I was born with complete heart block and I was fitted with a cardiac pacemaker, in a world first, in 1978. Throughout my life, my care has been experimental and uncertain. By the age of 7 I had been fitted with five pacemakers, each by thoracotomy (my ribs were broken and the device was fixed directly to the heart and set at fixed rate that over-rid my heart’s natural rhythm).
I would physically vomit with exertion or strong emotion. I was not allowed to take part in gym lessons, attend dance classes or participate in active play. When I was 12 years old, I was fitted with my first variable rate pacemaker which enabled me to be more active. Then a hole in my heart was discovered and fixed via open heart surgery, at 13 years of age. It seemed utterly relentless. Yet, there was no psychological support for my family or I.
The challenges of living with this condition don’t end. Last summer my pacing leads unexpectedly broke for the third time in just seven years. Since I require specialist intervention I had to wait for two months for a surgical slot with the complex pacing team for lead extraction and to be fitted with my 11th pacemaker. A month of this was spent in hospital, during my son’s summer holidays.
I am passionate about using psychologically informed care to improve mental health, well-being and recovery for those of us living with a heart condition from birth. My interest bridges my lifelong personal experience with academia and engagement with key stakeholders and policy makers.
My research aims to better understand the factors that contribute to an increased risk of mental health difficulties drawing on current evidence and neuropsychological theories, including the novel application of Polyvagal Theory, to inform medical and psychological care and to empower members of this population.
You can read more in my chapter in a book edited by Professor Stephen Porges, neuroscientist and Deb Dana, body psychotherapist, in a recent article, by watching this recent conference presentation and in my most recent journal article. At present, I am also leading a collaboration exploring the impact of hospital gowns on recovery and well-being and I also work voluntarily with The Somerville Foundation by contributing psychoeducational resources.
Feeling uncertain about accessing safe treatment can contribute to the psychological burden of living with CHD. As such, I have been work voluntary as Scottish Campaign Manager for The Somerville Foundation (The leading charity in the UK supporting adults with CHD) since submitting a petition to the Scottish Parliament in 2012 The Scottish Parliament in 2012.
I sit on NHS Scotland’s Scottish Congenital Cardiac Advisory Board and in January 2018 Scottish Healthcare Standards were published which include recommendations for psychological support.
This was a significant step forward for our care provision and the first time we have had Scottish healthcare standards. We are now working with Health Improvement Scotland to develop standards for local care provision and I sit on the recently developed Scottish Obstetric Cardiology Network.
Improving wider awareness is vital to enhance social inclusion, a key protective factor for psychological wellbeing. As such, I co-created Scarred FOR Life, on behalf of The Somerville Foundation, with two friends Caroline Wilson and Jenny Kumar. This photography exhibition comprises portraits of adults with CHD to help change perceptions about scars and tell the story of a population hidden in plain sight.
Launched at Glasgow’s Kelvingrove Art Gallery and Museum in 2015 it has toured several venues including The Scottish Parliament. Well received by the public, gaining national media attention, it has now been replicated across the UK.
Psychology has the power to improve lives by enabling people to make sense of their lived experience and to share this to build understanding and to improve social support and inclusion. As medicine advances it is vital that we work to inform medical care with psychological understanding to improve patient experience, recovery and wellbeing.
Dr Liza Morton is a Chartered (BPS) and Registered (HCPC) Counselling Psychologist working part-time in independent practice in Stirling, Scotland.