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Introduction

The initial phase of the COVID-19 pandemic led to unprecedented demand on the NHS in the UK, inevitably impacting on the delivery of other services, including stem cell transplant.

The National Institute for Health and Care Excellence (NICE) responded by publishing specific COVID-19 rapid guidelines for stem cell transplantation, which advised the deferring of most stem cell transplants, where possible, until the risks associated with the pandemic had diminished.  

The emergence of the COVID-19 was also inevitably a worrying time for stem cell transplant patients and their families, who have been some of the most significantly affected groups during the pandemic, with many being advised to shield by NICE and Government guidance. Despite this impact, their experiences were not being captured by broader initiatives considering the experience of cancer patients. 

Therefore, between April and May, Anthony Nolan asked patients who have had stem cell transplants, or were due to receive stem cell transplants, about their experiences of treatment since the pandemic began. The findings were used to help us provide the most relevant information and support to stem cell transplant patients, to inform our work as a charity, and to support clinicians and the NHS. 

Since the beginning of May, the NHS has moved into the second phase of the COVID-19 response, balancing the competing demands of retaining capacity to treat COVID-19 patients and restarting urgent services, including stem cell transplantation. This means that services are working to safely get transplants that had to be delayed back into the system. In this context, it was important for Anthony Nolan to advocate for stem cell transplant patients, understanding their experiences and concerns in this challenging time. 

We launched an updated survey in June and July to understand how the NHS moving into the next phase of their response affected patients.  

This report shares results of the latest survey, offering a snapshot view of their experiences of treatment and care in the context of the COVID-19 pandemic. The findings highlight the needs of patients at this time, particularly around emotional support, while raising important areas for the NHS to consider as the ‘new normal’ begins to take shape to ensure that changes are patient-led.

About this survey

The survey was designed to be light-touch and to gather insight from patients who have received or are awaiting stem cell transplant. The survey aimed to capture: 

  • The status of their treatment and outpatient appointments  
  • The level of communication with their health team, and any alternative provision that had been put in place to enable this 
  • Shielding status  
  • Access to practical and emotional support  
  • Impact on mental health and wellbeing  

The survey was open from 22 June to 5 July and there were 139 responses; 11% of respondents are currently awaiting a stem cell transplant and 89% of respondents have previously had a stem cell transplant. The majority, 86%, are receiving their care in England.

Category
Governance