Back in 2012 The Somerville Foundation appointed me as their (voluntary) Campaign Manager in Scotland after seeing me present evidence to The Scottish Public Petitions Committee at the Scottish Parliament. I had submitted a petition to the Scottish Government to ask for Healthcare Standards and improved care provision for adults born with a heart condition following various critical challenges with my own adult care and after reaching out to others to find I was far from alone. Congenital Heart Disease (CHD) is the most common birth defect, affecting 1 in 125 babies. 90% will now survive into adulthood compared with just 20% in the 1940s. We can thank advances in modern medicine for this growing population. This is a heterogeneous group including people with a wide variety of different cardiac conditions of varying complexity. Currently, there is no cure for more complex CHD with treatment and lifelong monitoring required. For today’s adult survivors, treatment has often been experimental while their care provision has all to often not evolved in time to meet their needs and many patients are lost to follow-up. There is an estimated 16,500 such adults in Scotland, although worryingly around half are lost to the system. At least a further 135 patients each year make the transition from paediatric services in Glasgow (NHS National Waiting Times Centre, 2012).
You don’t have to be a fashionista to know that what you wear impacts how you feel about yourself. Yet, fashion is unrepresented in contemporary psychology. Of the studies that have been done we know that clothing impacts self-esteem (e.g. Creekmore, 1974). Getting dressed is a process of self actualisation in which the individual strives to achieve fusion between the self and the outfit. Yet, hospital clothing can be the opposite, a distinctly failed fusion of self and dress (e.g. Topo and Iltanen- Tähkävuori, 2010). The instruction to wear a backless gown for medical interventions (e.g. for x-rays or theatre) may add to a sense of disempowerment. We know from psychological literature that such loss of control and autonomy can increase vulnerability to post traumatic stress, anxiety and depression. The clothing worn by the attendant medical provider may further any power imbalance between patient-medical professionals which is inconsistent with the ‘Person Centered’ approach advocated by NHS policy to safeguard patients from depersonalised care (Morton, in Press, 2015a, 2015b, 2012). Hospital clothing can also impact on physical health. The recent #EndPJparalysis social media campaign led by NHS-trained nurse, Brian Dolan focused on encouraging patients in hospitals, where possible, to stop wearing their pyjamas or hospital gown based on the idea that wearing pyjamas can reinforce the ‘sick role’ and prevent a speedier recovery.
This book (left) is now available to pre-order (click the image) & it will be published in June (USA) & July (UK). In my chapter, I explore how The Polyvagal Theory can provide an embodied understanding of living with a heart condition from birth.
The Polyvagal Theory & Neuroception of Safety
Neuroscientist Professor Stephen Porges’ Poly Vagal Theory (PVT) offers an embodied understanding of our nervous system, senses, emotions, social self & behaviours. He proposes that one of the most fundamental jobs of our body’s nervous system is to keep us safe, a task he calls Neuroception. To this end, three systems have evolved over time; each controlled by a different branch of the vagus system (hence, The Polyvagal Theory). This enables us to self regulate & respond to threat (including social threats like rejection or physical threats).
"Your chapter provides new information for those of us, who have studied the bidirectionality of brain and body. As a scientist, I have frequently talked about the bidirectionality between heart and brain and between visceral states and mental function. However, your chapter truly provides a personal narrative of these concepts that has been missing from the scientific literature and specifically from Polyvagal Theory." Prof Stephen Porges, Neuroscientist.