Far from being a “great equalizer,” the covid-19 pandemic is intensifying health inequalities. Those already most vulnerable face the greatest impact physically, psychologically, economically, and socially. As we move from the acute to the chronic phase of the pandemic we need to develop a strategic framework for those of us who are most vulnerable. We need a team approach which includes those most affected by the pandemic, healthcare workers, and policy makers.
I have been dependent on pioneering cardiac care since I was fitted with my first pacemaker at 11 days old at Glasgow’s Yorkhill Hospital in 1978—a world first at the time.  Early devices were fickle and by the age of seven I had been fitted with five pacemakers, each by thoracotomy. They limited my heart to a fixed rate preventing physical exertion until at the age of 12 I benefited from a variable rate pacemaker. An atrial septal defect was repaired during my teenage years, requiring open heart surgery and I was fitted with my 11th device two years ago. Epicardial and endocardial leads have been left in situ presenting risk of infection.
A highly contagious, life threatening virus that attacks the lungs and cardiovascular system has been a further blow in a lifelong fight for survival and I have been shielding since mid-March. While this has been difficult, emerging from my “shielding bubble” evokes challenges of its own. As others drop their guard those of us who are most vulnerable are potentially at even more risk.
While discussions around “vulnerable groups” often assume an “elderly population” people across the lifespan live with serious underlying health conditions, each facing different challenges consistent with their age. Those of us living with lifelong conditions, such as congenital heart disease, have often already endured a lifetime of medical interventions, and as such, are more vulnerable to the psychosocial impact of the pandemic.
Covid-19 presents increased risk of serious complications and fatality for people with complex congenital heart disease (CHD). [2,3] This is a heterogeneous population with some patients, depending on their underlying cardiac physiology and functioning, advised to socially “shield” by staying at home from March 2020 for at least three months. [4,5] For others, vigilant social distancing has been indicated although guidance has, at times, been inconsistent and confusing. The CHD population tends to be a younger cohort since medical advances have led to improved survival rate for this population into adulthood by 75% since the 1940s.  We are far from the only younger population living with an underlying health condition. Others include those living with cystic fibrosis, severe asthma, diabetes, and those on immunosuppresants due to autoimmune disease or cancer treatments. Most of these conditions are invisible making it harder to access support and understanding when required.
Many of us are studying or in employment or have partners who are key workers. We may be parents, with school age children and financial responsibilities. Often we have lived with a serious medical condition from birth, enduring countless invasive medical interventions, while depending on being able to access timely, specialist care. This can be challenging at the best of times. I have been involved in advocating for improved care and psychological support for people living in Scotland with CHD for the last eight years. [7,8] Concerns about being able to access both emergency care (with or without covid-19 symptoms) and routine care (without becoming infected in the process) are common.
At the best of times chronic health problems increase vulnerability to anxiety and depression often with poor access to appropriate psychological support. [9,10] Restrictions to human contact, one of the most protective factors for mental health, risks undermining coping strategies and presenting obstacles to social support. As life returns to normal “Covid-Anxiety” may prevail and further increase vulnerability to post traumatic stress, psychological distress, and be a barrier to returning to pre-covid functioning.
Abelism, which can already affect every facet of life, has been fuelled with narratives to reassure the healthy majority such as “The virus only kills people with serious health conditions” and talk of “herd immunity.” This risks leaving people with underlying health conditions feeling further marginalised and dispensable, while negatively impacting on our self-esteem.
Yet, while living with a serious medical condition can be difficult, it can also foster post traumatic growth a greater appreciation of life, and our loved ones, and a greater sense of resilience. We are often well placed to manage the current crisis; experts in self-managing our health, threat to life, and dealing with uncertainty. Further, we are used to working with our healthcare providers to make shared decisions. By developing a framework to support us and our healthcare providers, we can support self-management of living with an underlying condition under the threat of covid-19. This will enable us to emerge from shielding with more confidence and resume as normal a life as possible.
We need a framework which provides:
- Access to “real time” localised infection rates to allow risk-assessment and inform self-management.
- Up to date information about condition specific risk based on the best emerging evidence.
- A flexible approach considering the unique health needs for individuals and their own life circumstances with guidance for employers and education providers to adapt work/education to minimise risk whilst promoting inclusion.
- A psychologically informed approach to care provision which takes into account the unique psychosocial impact of covid-19 on people with serious underlying health conditions.
- Timely access to emergency and usual care provision and clear guidelines about accessing appropriate care in the event of becoming infected with covid-19.
Guidance for people with underlying health conditions has, at times, been inconsistent and confusing. This is perhaps understandable due to the novel and emerging nature of the global pandemic. However, the opportunity to prepare for longer term management and further waves is now. It is imperative that policy makers, healthcare providers, and patient groups come together to this end to minimise the impact on physical and psychological health for those already most at risk.
Liza Morton, Chartered Counselling Psychologist and Teaching Fellow, University of Strathclyde
2] Wu Z, McGoogan JM. (2020) Characteristics of and Important Lessons From the Coronavirus Disease 2019 (COVID-19) Outbreak in China: Summary of a Report of 72314 Cases From the Chinese Center for Disease Control and Prevention. Jama, 2019:3–6
3] Brida, M., Chessa, M, Gu, H., Gatzoulis, The Globe on the Spotlight: Coronavirus Disease 2019 (Covid-19) (2019) The International Journal of Cardiology, https://doi.org/10.1016/j.ijcard.2020.04.006
4] British Congenital Cardiac Association (BCCA), 18th March 2020, BCCA COVID-19 Guidance for Vulnerable groups with congenital heart disease, https://www.bcca-uk.org/pages/news_box.asp?NewsID=19495710
5] UK Government (2020) COVID-19: guidance on social distancing and for vulnerable people, https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults
6] Ooues, G., Clift, P., Bowater, S., Arif, S., Epstein, A., Prasad, N., … & Hudsmith. L. (2018). Patient experience within the adult congenital heart disease outreach network: a questionnaire-based study. Journal of Congenital Cardiology, 2, 7. https://doi.org/10.1186/s40949-018-0020-3
7] The heart of the matter: the need for standards around congenital heart disease – Dr Liza Morton, Healthcare Improvement Scotland, 29th October 2019.
8] Rhodes, E. (2018) ‘Momentous’ day for campaigner, Psychologist, 31.
9] Morton, L (2020) Using psychologically informed care to improve mental health and wellbeing for people living with a heart condition from birth: A statement paper, Journal of Health Psychology, 25, 2: doi: https://doi.org/10.1177/1359105319826354
10] Holmes, E., O’Conner, R.C., et al..(2020) Multidisciplinary research priorities for the COVID-19 pandemic: a call for action for mental health science. Position Paper. The Lancet, DOI: doi.org/10.1016/S2215-0366(20)30168-1