The COVID-19 pandemic has led to a number of rapid changes to healthcare systems. Hospitals were transformed into pandemic-oriented hospitals, elective surgeries were cancelled, or postponed, and face-to-face consultations were moved to virtual platforms. Many countries experienced shortages of medical supplies, especially ICU beds and ventilators, resulting in rationing of limited healthcare resources. In this blog, Puren Aktas and Liz Richardson detail Turkey’s COVID-19 response, the experiences of chronic and rare disease patients during the pandemic, and they highlight key recommendations policymakers can utilise.  

• The coexistence of different needs and priorities within the same healthcare system can result in access problems in times of health crises.
• Patient organisations can provide insights on disease‐specific experiences and problems that are very valuable to improve access to healthcare services.
• Healthcare decision-making authorities should gather information on different needs of patient groups, and develop evidence-based policies according to the needs of different patient groups.

One negative impact of the restructuring of healthcare services has been to create problems for non-COVID 19 patients who need to access healthcare services. Access problems have hit patients with chronic and rare diseases significantly, because of their complex health conditions which require regular access to specialised medical services. Even during the functioning of healthcare systems during regular, non-pandemic periods, patients with rare diseases experience challenges in access to healthcare services, which have been exacerbated by the COVID-19 pandemic.

Patient-led organisations have seen disruptions in care for people with rare diseases, and their experiences can tell us a lot about the trade-offs having to be made by health services in their rapid COVID-19 responses. Recent research in Turkey has explored the experiences of patients with chronic or rare diseases and their access to healthcare services in during the COVID-19 pandemic, by conducting interviews with representatives of patient organisations in Istanbul. While these experiences took place in Turkey, discussions with health professionals in the UK suggests a similar picture emerging that policymakers in the UK should learn from.

Policy Measures Taken in Turkey and England

After the first COVID-19 case in the country on 11 March 2020, the Ministry of Health in Turkey introduced measures to prevent the spread of the virus such as isolations and quarantines if needed, country-wide contact tracing, and routine follow-ups of all contacted patients by their GPs. On 20 March 2020, the Ministry of Health issued a circular stating that “all hospitals with at least two specialists from infectious diseases and clinical microbiology, pulmonary medicine or internal medicine, and level 3 intensive care beds qualify as pandemic hospitals”. As a result, all elective surgeries were cancelled as recommended by the Ministry of Health and repeat prescription reports were extended by the Social Security Institution.

Compared to Turkey’s swift response to pandemic’s challenges, the UK government has been criticised for falling ‘disastrously short’ in their response to the COVID-19 pandemic. The government has been accused of ignoring scientific evidence and overlooking other countries’ experiences. Weaking of the public health and underinvestment in the NHS has been emphasised as a contributing factor to the UK’s response to the pandemic.

Experiences of Patients from the Perspective of Patient Organisations

The interviews with the representatives of patient organisations reveal that the regulations introduced by the Ministry of Health to address the pandemic have resulted in problems for patients accessing routine and emergency health services. The lack of clinical information at the beginning of the pandemic resulted in anxiety among the patients as stated by all patient organisations who contributed to our research. People were worried about their health status because of inability to access to healthcare services and contact with COVID-19. Fortunately, some of these anxieties were reduced at a later date by the availability of more accurate, scientific information with new research on COVID-19 which reassured patients with chronic and rare diseases.

Cancelled or postponed diagnosis procedures heightened patients’ fears about their health conditions worsening. Some participants mentioned initiatives taken by hospitals and physicians to isolate some departments from COVID-19 patients, but these measures were not enough to relieve the concerns of patients with chronic or rare diseases. Physicians took initiatives to cancel or postpone appointments for high-risk chronic patients until they could ensure safer healthcare provision. But these measures were not planned by the Ministry of Health and not supported by other mechanisms such as the introduction of telehealth or online services, or the creation of self-monitoring plans for patients. The extension of repeat prescriptions by the Social Security Institution was a very positive development for all patient groups who participated in the study, but this regulation is not considered a viable long-term solution as the treatment must be regularly monitored.

Involving Patient Organisations into Decision-Making Procedures

The Turkish case suggests that access problems experienced by patients with chronic and rare diseases during the COVID-19 pandemic have been shaped by the multidimensional nature of the healthcare decision-making process. The narratives of patient organisation representatives show how policies are experienced by citizens, sometimes in an unpredictable way by decision-makers. So, these narratives are valuable in providing disease-specific experiences and problems.

Within the context of a pandemic, patient organisations could have contributed to the decision-making process with their knowledge of disease-specific patient needs. Decision-making authorities should consult patient organisations to gather information on different needs of patient groups in times of health crises, and consider developing policies according to the needs of different patient groups in the light of evidence, since patient organisations are capable of contributing to improving the quality of care provided.

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