Getting to the heart of the problem of patient perceptions
Dr Liza Morton – psychologist, congenital heart patient and the youngest recipient of a pace maker in the world, spoke to INGA Wellbeing about her inspiring work to break down barriers that potentially segregate those living with ill-health from society.
Our appearance has an impact on how we see ourselves, and others see us. Your exhibition Scarred FOR Life highlights the importance of embracing this reality and not hiding it away. What were the main issues you wanted to communicate through this work?
I co-created the Scarred FOR life photography exhibition with two friends, Jenny Kumar and Caroline Wilson, who were also born with a heart condition on behalf of The Somerville Foundation (The UK’s leading support organization for adults born with a heart condition). For this exhibition Kirsty Anderson captured portraits of eight adults each with a different congenital heart condition. The exhibition aims to empower this population, raise awareness of our unique needs and to help change the perception that scars should be hidden away. I think that we tend to see people as either ill or well but anyone living with a health condition knows that this dichotomy is false and it can create barriers in society (such as an expectation to work full time or not at all).
The story of each model’s journey navigating the complexity of living with this condition, in their own words, was written on the reverse of their eight-foot high photo banner to give voice to this often hidden population. We wanted to show that we are all just people, each contributing to society, perhaps as parents, colleagues, sons and daughters or brothers and sisters, trying to live as normal a life as possible. The exhibition was launched at the central hall of Glasgow’s Kelvingrove Art Gallery and Museum where it sat for a month. The gallery is within walking distance of the children’s hospital and it was touching to see comments in our visitor book from parents and young children who were able to identify and gain inspiration from the models. It has since toured several venues including The Scottish Parliament. It has been well received by the public gaining national media attention and due to its success the project has now been replicated across the UK.
What practical steps can be taken for people to be seen as more than a patient, a person?
Living with a medical condition can have a huge impact on how you see yourself. Studies have shown that one of the main issues for people with congenital heart disease is growing up feeling different. We frequently have to undergo numerous medical interventions, from infancy, such as ECG’s, ECHO’s, surgeries, cardiac catheterisation, X-Rays, 24 hour heart monitoring to name a few. For many of these tests and interventions we are required to strip off and wear a backless hospital gown. This has always struck me as further disempowering during a time of vulnerability. It can feel like you are being stripped of your identity and to me hospital gowns seem undignified. I think that having more choice about what you wear would contribute to better humanising medical care and addressing the power imbalance between the ‘patient’ and medical care providers. It would also facilitate feeling more in control about what was happening and enable people to feel more like themselves. We know from research that these are all important protective factors for our mental wellbeing.
You have a fascinating insight into the impact of long term healthcare on your wellbeing as both a psychologist and congenital heart patient. What do you see as the key factors people should consider to care for their mental health when diagnosed with a chronic condition?
I was born with a heart condition which means I have depended on pioneering medical treatment since birth. This has involved countless medical procedures, surgeries and hospital stays. Few people know that heart problems are one of the most common congenital conditions affecting 1 in every 125 live births. Thanks to medical advances there is a growing population of adults living with these conditions. Survival rates have increased from around just 20% in the 40’s to around 90%. This population includes people with a variety of heart conditions varying enormously in complexity. Lifelong care is recommended although many of us have experienced difficulty getting the specialist adult care we need adding to the burden of living with a serious medical condition from ‘cradle to grave’. I have complete congenital heart block which means that the electrical signal that drives my heartbeat is blocked between the top and bottom chambers of my heart. To compensate I was fitted with an external pacemaker when I was just four days old and when this seemed to work a pacemaker was surgically implanted to my heart. At 11 days old, I was the youngest baby in the world to undergo this treatment at the time and my ongoing care has been experimental. I am currently fitted with my tenth pacemaker and I also had open heart surgery when I was twelve years old to fix a hole in my heart. Due to limitations in technology all of the leads were left in and I had to undergo risky surgery a few years ago to make enough space to fit the new ones I needed. Technology has improved enormously over the years. Whereas my childhood pacemakers were set at a fixed rate, limiting me physically, they are now much more physiologically responsive. To live well with this condition I have to manage my physical, emotional and psychological wellbeing carefully. I am passionate about building on this knowledge personally and professionally.
A growing body of research has shown that people living with congenital heart conditions are more vulnerable to mental health difficulties including anxiety, depression and post-traumatic stress. This is perhaps not surprising given the increased number of challenges we can face such as missed schooling, surgeries and medical interventions, missing out, physical limitations, uncertainties about prognosis, scarring and discrimination. Developing a better understanding of ways to improve wellbeing and build resilience, inform therapeutic interventions and to better psychologically inform medical care are my current areas of research interest. I think various factors can help such as promoting feelings of safety where possible, building social support and being resourced to manage distress. Of course, we are all different, but I think it is important to have the space to acknowledge the very real emotional impact of adversity. If we don’t our feelings may become bottled up and manifest themselves in more serious problems such as anxiety, depression and trauma or impact on our physical recovery. Social support offers one of the best means of emotional support. It is so important to feel heard, understood and that you are not alone. This support may come from loved ones, patient groups or as more formal support from counselling or therapy. It is also important that we are surrounded by people who have a genuine understanding of what we are going through. I would like to see better training for all medical staff so that psychological factors such as promoting a secure attachment between infants and caregivers, facilitating feelings of safety where possible and appropriately communicating and managing distress are not just an afterthought but considered a vital part of holistic care.
During my training as a Counselling Psychologist I attended a Body Psychotherapist. One of the most beneficial things I learned from this was how to accept and listen to my body and respond to its rhythm rather than fighting with it to trying to keep up with everyone else. I used to push myself relentlessly and become self-critical when I couldn’t keep up. Ironically, now that I pace myself I find that I am less tired, and function better than I was able to before. Other strategies that help me include focusing on and making the most of what I can do, being informed about my condition and being assertive about my healthcare needs.
To find out more about the improved patient clothing Dr Liza Morton referred to please take a look at INGA Wellbeing’s collection of patient clothing at www.ingawellbeing.com
Liza is a Chartered (BPS) and Registered Counselling (HCPC) Psychologist who currently works in private practice in Stirling. Liza leads the professional practice module on Strathclyde University’s Clinical Health Psychology MSc and she is an honorary Senior Research Fellow at the University of Suffolk’s Congenital Cardiac Research Centre. She has a special interest in the psychological impact of living with a heart condition from birth and her most recent work will be published in a book chapter forthcoming from Norton Press in May 2018*. She works voluntarily as the Scottish Campaign Manager for The Somerville Foundation advocating for improved care for this population. Liza has complete congenital heart block and an atrial septal defect and as the youngest recipient of an implantable cardiac device at 11 days old, in the late 1970’s, she has received pioneering medical treatment for her condition since birth.
Scarred FOR Life on Instagram: @scarredforlife_tsf
*Morton, L. (in press) Born with a heart condition: The Clinical Implications of Polyvagal Theory in Clinical Applications of the Polyvagal Theory: The Emergence of Polyvagal-Informed Therapies edited by Prof Stephen Porges and Debs Dana. W.W. Norton and Company. NY.