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Endocrine Abstracts (2020) 72 OC1 | DOI: 10.1530/endoabs.72.OC2

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Neuroendocrine Cancer UK, Leamington Spa, UK


Background: March 2020 saw the UK enter lockdown in response to the global COVID-19 pandemic. The impact on healthcare availability and resources was immediate.To better understand the impact these events had on the Neuroendocrine Cancer community – NCUK undertook a snapshot consultation.

Methods: During May–June 2020, 366 Neuroendocrine Cancer patients across the UK completed an online survey, disseminated via social media and the NCUK patient network.

Results: All responses were from the UK with an even geographical representation and most respondents were linked to a Specialist centre or clinic. In terms of disease site: 57% small bowel primary, 20% pancreatic, 12% lung. More than 50% reported that there had been disruptions to their care: mainly postponed consultations (45%) or postponement of scans (33.7%): not all rescheduled. Significantly, despite media reports, only 3.4% had chosen to delay appointments. Treatment: 18% reported key changes, 17% some changes – 65% reported no change in treatment or treatment plan. Almost 50% reported increased anxiety – due to lockdown and restricted access to specialist care. For 66%, support was received from Specialist Nurses*(40%) and GPs (30%). Of those reporting no support, in the majority of cases (70%) this was patient choice, however 30% said they had no contact details, no response or their point of contact was not available. Most respondents were satisfied with care and understood reasons for delays / changes in care.

Conclusion: This survey offers an insight into the impacts of Covid-19 on the UK Neuroendocrine Cancer Community. What is striking is the significant impact in terms of health anxiety and psychosocial well-being – even for those, who are reasonably well and usually seen less frequently. Whilst it is reassuring to note that many patients have been able to maintain access to healthcare and contact their teams, for others there have been delays and cancellations of appointments, investigations and / or treatments – some with no further plans made, leaving them feeling adrift.

*During peak period – many CNSs were redeployed – NCUK received requests for telephone triage assistance during this time to maintain patient support – which was provided. Respondents did not distinguish between NHS or NCUK Nurse Teams.

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