Overall, the society aims to use data collected to assess if patients and those caring for someone with this disease have had access to all the information they need, and if the guidance provided by health authorities suits their circumstances.
Among its 20 questions, the survey asks whether and to what extent the pandemic has limited patients’ access to healthcare services, including outpatient and emergency room visits, appointments with their general practitioners, and access to blood transfusions.
Other questions address if and how patients and their caregivers were informed of COVID-19 recommendations issued by U.K. agencies specific to sickle cell.
Questions about compliance with these recommendations, as well as their impact on patients’ and carers’ mental health, are also in the survey.
According to guidelines on the society’s website, sickle cell patients are thought to be vulnerable to the pandemic. As a result, in addition to safety measures that apply to everyone — like social distancing and lockdown restrictions — patients are also encouraged to adhere to shielding.
Shielding is a preventive safety measure to restrict contact between people deemed extremely vulnerable (those with serious health conditions and the elderly) and possible sources of infection with the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), which causes COVID-19.
Under shielding restrictions, people should not leave their homes for any reason, and should avoid face-to-face contact as much as possible. They should use remote technology, such as phone, internet, and social media, for contact and communications. Necessary food and medications should be provided by individuals who leave the goods at their door, to reduce personal contact.
Caregivers, healthcare professionals, and others providing essential care, who must come into direct contact with vulnerable individuals, should wash their hands for at least 20 seconds when arriving to patients’ homes and continue to wash them often while staying there.
People participating in this survey are asked to leave an email contact if interested in taking part in future focus group sessions or case studies.
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