Myeloma UK COVID-19 survey: Government cannot abandon patients as shielding measures lift says CEO

Myeloma UK today released the results of its COVID-19 patient survey.  Undertaken from May to June, the survey is the first real-time study of the pandemic’s direct impact on myeloma patients, their families, and carers.

With over 1,100 responses, the survey revealed the first picture of the situation for myeloma patients:

  • Most patients continued to receive treatment however 40% of the patient population had their treatment changed in some way, including having stem cell transplants postponed. 8% of patients had their treatment stopped entirely
  • More than half of patients (54%) found it harder to manage their physical health, and one third (33%) found it harder to manage their mental health whilst shielding. Despite this, 60% of patients felt shielding was necessary and only 3% did not think they had to shield or considered themselves not to be shielding
  • Across a number of issues, family, friends and carers were more concerned or felt more affected than patient respondents, and 51% were finding it harder to support the patient. Despite this, 92% were not seeking support for themselves.
  • Very few myeloma patients have tested positive or experienced COVID-19 symptoms.

Commenting on the Myeloma UK COVID-19 survey, CEO Laura Kerby said:

“We are encouraged that relatively few myeloma patients have presented with COVID-19 symptoms which indicates that the sacrifices made by the community to follow shielding advice have been beneficial.

But it only raises further concerns about the pressures patients will feel post August, when England becomes the first country to revoke the shielding classification. The UK government was the first body to directly identify myeloma patients as being extremely clinically vulnerable in this pandemic – it cannot abandon them halfway through it.”

Responding to the headline findings, Kerby is clear on the further measures needed by the myeloma community:

“The survey demonstrates a clear and urgent need for policy makers to regain the trust and confidence of patients by developing a holistic approach to shielding that is relevant to the challenges they are facing.  In particular, the government risk assessment tool being developed to provide more nuanced future shielding advice must be directly calibrated for myeloma patients in the same way as it is for patients with hypertension or diabetes.

We also urgently need real-time data to understand how changes to treatment will impact in the longer term on patients.   This must sit aside a guarantee that alternative treatments will be available as long as they are needed, and safe treatment spaces, testing and infection controls are in place for all myeloma services.

And for those patients who do show COVID-19 symptoms, it isn’t acceptable to put them on the same testing and monitoring pathway as the general population.  We know that myeloma patients are more likely to develop serious symptoms as a result of being immunocompromised and they need prioritised access to testing.  If diagnosed positive, they should be able to access specialised home monitoring packages – or ‘virtual wards’ – that can facilitate regular testing of indicators such as oxygen levels.

I am also concerned about the hidden impact of the pandemic emerging from this data – the toll being taken on the whole household.  Families, friends and carers have had to work out how to care for a clinically extremely vulnerable loved one during this time, and the majority are doing this without any support themselves.

Myeloma patients, their families and carers have shown extraordinary strength in looking after their welfare during this pandemic.  The government must now enable them to continue to do so.”

The full report of the Myeloma UK COVID-19 survey can be found here

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