Healthcare systems need to better addresses waiting across the patient journey to support health, wellbeing, recovery, and trust
Originating from the Latin patiens from patior, the word patient means to suffer. The patient must develop the forbearance to endure illness, medical treatment, and dependency on others for care, doing so patiently.
One of the hardest parts of my lifelong patient journey, with congenital heart disease (CHD), has been fostering the patience to wait, in countless ways, for the medical treatment I depend on.
As a child¹, I sat shaking, dizzy, and nauseous, as we waited by the phone for my cardiologist to return my mum’s call when I was unwell. We waited at out-patient appointments during bi-annual “check ups” and frequent unscheduled ones when my pioneering pacemaker saw fit to play up—which it often did. We spent endless hours in the “waiting area” outside my consultant cardiologist’s office, while I cuddled into my mum who read to me from the least sticky book we could find from the toy corner.
We waited at each stop on the obligatory hospital tour of various departments for an x-ray (me in a hospital gown, cold, and self-conscious), pacemaker interrogation, ECHO, and blood tests. I lay, semi dressed, during each procedure, counting the holes on the ceiling tiles trying not to focus on what was being done to my body. We ended the appointment, back where we’d started, nervously waiting on my cardiologist calling us into his consulting room to share the results with us.
If treatment was indicated, we waited for a bed on the paediatric cardiology ward, or a date for further investigations, or surgery. Inpatient life also revolves around waiting; for the doctors’ round each morning; to be collected by a porter for procedures; for results; for your slot on the surgical list (hungry, sedated, and sick to the stomach with nerves); post-surgery for the nurse to come and help you change into your pyjamas from the hospital gown; to remove the cannula, stitches, and various other pieces of medical equipment; for the doctor to write the discharge letter and for the pharmacy to prescribe the discharge medication so you can finally go home.
As a paediatric cardiology patient receiving pioneering treatment, I was able to access specialist care when I needed it, albeit after some waiting. However, despite recommendations, specialist care provision has not evolved in time to meet the needs of the growing population of adults living with congenital heart disease and it can be inconsistent and difficult to access. All too often we are “orphaned” by the very system that saved us as infants.²
As an adult, I’ve struggled to access specialist care having and I have had to wait out additional steps; for the GP to call back, in accident and emergency, in the assessment unit of the local hospital, to be moved to the local cardiology ward and for a bed at the specialist centre. At each stage, I have to retell my colourful medical history to the nurse sister, the on-duty registrar, the consultant, and the trainee doctors who heard rumour about this “novel presentation.” At times, this “wait” for the specialist care I need has been life threatening, leading to my advocacy efforts to improve care provision with healthcare standards and increased funding for CHD care in Scotland.³
A few years ago, I spent over a month in my local hospital, on telemetry because the leads of the pacemaker I am completely dependent on developed an intermittent fault (again!). I had to wait for a surgical slot to have my 11th pacemaker and leads fitted at the specialist centre. My mum, young son, and husband visited daily, the anxious wait is a family affair.
Waiting gives you time to think. Impotent, time allows fear to grow. When you are in pain or feeling unwell, it can seem intolerable, the hours and days stretch before you, life is on hold. It can make you feel frustrated and unimportant, leaving loved ones feeling helpless or, as they chase the doctor down, deemed demanding.
Despite knowing that the expertise, tests, and treatment you need to feel better (or keep you alive) exist, you are powerless to access them, in a timely fashion. When you have a lifelong condition this becomes a constant stressor, often preventing you from seeking medical care. The effort of making your case to be thrown a few healthcare crumbs can be overwhelming.
NHS satisfaction and social attitude surveys repeatedly find that access and waiting times are a major source of dissatisfaction for patients, reason for complaint, and an indicator of poor quality care.⁴′⁵ In the context of the covid-19 global pandemic this problem has been exacerbated with already scarce healthcare resources, resulting from successive years of underfunding, being reallocated to tackle the pandemic. Healthcare provision has been put on hold for many and it is predicted that the NHS faces an enormous backlog for many years to come.⁹
This is especially concerning for those of us with serious underlying health conditions who face the greatest impact of the pandemic physically, psychologically, economically, and socially.⁶′⁷′⁸ Often those of us with congenital conditions have grown up being told we are lucky to be alive learning from infancy to be good patients. As such, we can be reluctant to voice frustration lest we seem ungrateful to the healthcare providers we depend on lifelong.¹¹ While being unable to offer adequate care can lead to moral injury in healthcare workers.¹⁰
We know that aspects of patient care that contribute to feelings of powerlessness, such as excessive waiting, can increase psychological distress. Feeling powerless is a risk factor for anxiety, depression, and Post Traumatic Stress Disorder, negatively impacting on resilience and recovery, and it is inconsistent with a person-centred approach to patient care¹¹´¹².
As part of a psychologically informed approach,¹¹ it is essential that the healthcare system better addresses waiting across the patient journey to support health, wellbeing, recovery, and our trust in those who care for us.
Issues to consider:
- At outpatient clinics inform patients about delays, if they are prolonged let patients go for a coffee and come back.
- There is nothing worse than waiting all day by the phone for a healthcare professional to call you and it doesn’t happen. If you can’t make the call make sure it is rescheduled.
- As an inpatient, small things are a very big deal when you feel unwell, vulnerable, and helpless such as waiting on someone to help you change from a hospital gown into your pyjamas, for a commode, or to refill your water jug when you are bed bound. Try not to keep patients waiting for basic needs.
- Systemic inefficiencies such as repeatedly being asked by multiple healthcare professionals for your medical history are exhausting when you feel unwell, please read our notes first.
- Extra “waiting lists,” for example for assessment only, to meet government targets don’t solve the problem and can lead to more confusion, false hope, and frustration for patient.
- Try not to become defensive or invalidate the negative impact of waiting on patient experience.
- Improvements in waiting times and length of hospital stay have been reported by shifting the focus to valuing patients’ time, proactively and systematically breaking down clinical processes, identifying problem areas and implementing targeted changes. ¹³′¹⁴
Liza Morton, chartered counselling psychologist, University of Glasgow and lifelong congenital heart patient.
Competing interests: none declared.
²Wray J, Friglola A and Bull C. Loss to specialist follow-up in congenital heart disease; out of sight, out of mind. Heart, 2012; 99(7): 485–490
⁴Robinson J, Porter M, Montalvo Y, et al. Losing the wait: improving patient cycle time in primary care BMJ Open Quality 2020; 9:e000910. doi: 10.1136/bmjoq-2019-000910
⁵McCarthy K, McGee HM, O’Boyle CA. Outpatient clinic waiting times and non-attendance as indicators of quality. Psychol Health Med, 2000; 5:287–93.doi:10.1080/713690194
⁶Holmes, E.A., O’Connor, R.C., Perry, V.H., Tracey, I., Wessely, S., Arseneault, L., Ballard, C., Christensen, H., Silver, R.C., Everall, I., Ford, T., John, A., Kabir, T., King, K.L., Madan, I., Michie, S., Przybylski, A.K., Shafran, R., Sweeney, A., Worthman, C.M., Yardley, L., Cowan, K., Cope, C.L., Hotopf, M., & Bullmore, E. Multidisciplinary research priorities for the COVID-19 pandemic: a call for action for mental health science. The Lancet, Psychiatry, 2020
⁷Vieira, C.M., Franco, O.H., Restrepo, C.G., & Abel, T. COVID-19: The forgotten priorities of the pandemic. Maturitas, 2020; 136, 38 – 41.
¹⁰Čartolovni A, Stolt M, Scott PA, Suhonen R. Moral injury in healthcare professionals: A scoping review and discussion. Nurs Ethics. 2021 Jan 11:969733020966776. doi: 10.1177/0969733020966776. Epub ahead of print. PMID: 33427020
¹¹Morton, L Using psychologically informed care to improve mental health & wellbeing for people living with a heart condition from birth: A statement paper, Journal of Health Psychology, 2020; 25, 2, https://doi.org/10.1177/1359105319826354
¹²Morton, L., Cogan,N., Kornfält, S., Porter, Z. & Georgiadis, Baring all: The impact of the hospital gown on patient wellbeing. British Journal of Health Psychology, 2020; 25, 3: doi.org/10.1111/bjhp.12416
¹³Ho ETL, Improving waiting time and operational clinic flow in a tertiary diabetes center. BMJ Qual Improv Rep 2014; 2:u201918.w1006. doi:10.1136/bmjquality.u201918.w1006