In November 2020, 530 of our members responded to a survey about their experiences to date with Covid-19 and the pandemic. Here is a report from surgeon Tom Kurzawinski about it and full results will be in our next newsletter. We aim to do a follow up survey soon.
“Coronavirus has affected everybody in the world, but it has been particularly difficult time for patients with pre-existing medical problems. Liz Glenister, CEO of Parathyroid UK, should be congratulated for conducting a Survey Monkey about experiences of patients with parathyroid conditions during Covid pandemic.
A survey was run during first 2 weeks in November 2020 and 570 patients from UK (81% from England) replied to it. This very large number of participants reflects not only the fact that parathyroid conditions are common but also highlights the strength of Parathyroid UK and an active participation of patients in works of their advocacy group.
2/3 of responders had hypoparathyroidism, mostly postsurgical, and were younger, while those with hyperparathyroidism were often over the age of 50. Survey revealed several important aspects of how coronavirus pandemic has affected these patients.
Firstly, there was a significant anxiety about whether they should be classified as Extremely Clinically Vulnerable (ECV). Only 11% of responders were classified as such by their doctors but 45% felt that they should be included in this group. The worry about contracting coronavirus was so significant that 35% of patients choose to shield independently. The inconsistency of UK Government rules which changed the classification of vulnerability did not help and caused confusion and frustration. About ¼ of respondents felt they had Covid, mostly mild or moderate but about 4% had severe symptoms requiring admission to hospital or ITU. The hospital stay varied from overnight to 3 weeks. There were also serious concerns about Long Covid and potential confusion between post viral long-term symptoms and problems relating to parathyroid conditions.
Secondly, majority of patients (85%) were very worried about becoming ill due to their parathyroid condition and needing hospital treatment during the pandemic. 63% felt that the stress of Covid had adversely affected their health. Interestingly, most responders did not feel that they are more more likely to get infected but that if they get infected, fighting the Covid would be more difficult because of their parathyroid problems. 27% experienced difficulty with work, especially stress, anxiety and fatigue, particularly in jobs requiring direct interaction with general public. Depressingly, there were complaints about unsupportive bosses and colleagues “who did not believe in Covid”.
Thirdly, access to medical advice was maintained despite pandemic and 36% of patients called the NHS helpline, 49% spoke to their GP and 23% to their consultant. Consultations were mostly on the telephone or internet but some (14%) face to face consultations took place as well. 22% had their consultations cancelled. Most patients (71%) were able to get calcium blood test done, about half of the tests were done in their GP practice.
Sadly, only 1/3 of patients with hyperparathyroidism who had their surgery scheduled during pandemic had an operation. Operations were postponed or delayed and many are still waiting for the date. The backlog of cancelled operations in the UK will be a huge challenge this year.
Despite limitations relating to possible misunderstanding or lack of answers to some questions and the fact that survey was anonymous, therefore it was not possible to tell if anyone had answered more than once, it represents unique experiences of patients with parathyroid conditions during Covid. Evidence highlighted by the survey should help medical profession to understand better the difficulties experienced by these patients and have a positive impact on their education and treatment.”