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Myeloma UK COVID-19 Survey 2: Data transparency key to safeguarding myeloma patients

Patient advocacy news // 29th October 2020

Myeloma UK today released the results of the second Patient, Family, and Friends COVID-19 Survey. The survey, which ran from August to September 2020, tells us how COVID-19 and the lifting of shielding are impacting myeloma patients, their friends and family.

With over 800 responses, the survey gives us a more detailed picture of how the myeloma community is feeling and how well they are being supported:

  • Patients reported ongoing concerns around shielding: Whilst most people (71%) were still shielding or concerned about shielding being paused, nearly half (46%) were concerned about shielding having to resume due to rise in COVID-19 cases
  • However, very few myeloma patients have tested positive or experienced COVID-19 symptoms
  • Patients are continuing to receive treatment and the number of patients having their treatment plan changed (42%) has not changed from Survey One
  • But a fifth of first line patients and almost one third of second line patients had their high-dose stem cell transplant (HDT-SCT) deferred. The majority of the affected patients (57%) are still waiting on their HDT-SCT to be rescheduled

Commenting on the Myeloma UK Patient, Family and Friends COVID-19 Survey 2 Shelagh McKinlay, Head of Patient Advocacy said:

“Our surveys represents the single most comprehensive picture of how the myeloma community has been impacted by COVID-19.

We cannot ignore the high level of disruption, uncertainty, and anxiety the myeloma community is facing due to lack of transparent data around government decision-making during the pandemic. With the further introduction of more localised restrictions, there is a risk that this ongoing disruption and uncertainty will get worse. This is particularly true for patients still waiting for rescheduled HDT-SCTs and those living in areas with high levels of COVID-19.

But we are pleased to see that although shielding has been lifted, the level of COVID-19 infection in myeloma patients remains low. It is also clear that thanks to changes in clinical practice and the increased availability of oral treatments patients are continuing to receive their treatment.”

Following the survey, Laura Kerby, Chief Executive at Myeloma UK, outlined what needs to be done to support the myeloma community and to safeguard their treatment and care.

“It is evident from the survey findings that more needs to be done to reduce the disruption and uncertainty myeloma patients, their friends, and family are facing due to the pandemic.

With COVID-19 levels rising across the UK, we urgently need clear and transparent criteria for initiating and pausing shielding. The government must clarify national guidance for shielding along with the evidence underpinning shielding decisions and the process for initiating it.

As localised restrictions are introduced there is a risk of inequalities in treatment and care. We need the government and the NHS to release more localised data on health service performance so any treatment gaps are quickly identified. This will ensure patients across the country can continue to receive the best possible treatment and care.

We also continue to have strong concerns about the impact of the pandemic on myeloma diagnosis. We know that cancer referral rates are down, but we don’t know how this is impacting myeloma patients. We need myeloma specific data to be published so we can understand the scale of the problem and push for the resources needed to treat a potential backlog of patients.

Myeloma patients, their families, and carers have shown great agility and tenacity during this pandemic. They have lived through shielding, continually changing guidance, new treatment plans and being extremely vulnerable to COVID-19. Now we need to push for more clarity and consistency to ensure the myeloma community continues to receive the treatment and care they need.”

Read the full Myeloma UK COVID-19 Survey 2 report.