Myeloma UK COVID-19 Patient Survey 2: Our call to action

29th October 2020 // Laura Kerby

Today, Myeloma UK publishes the findings from the second in our series of three COVID-19 Patient Surveys. This survey, taken in August and September of this year, presents some of the latest experiential data collected for myeloma at this time.

The scope of the study really enables us to focus on where and how we need to be communicating the patient voice and this will be integrated into the work we are doing for the rest of this year and into 2021.

But once again, the results expose some stark truths that myeloma patients are having to live with during this pandemic.

The continued rise of COVID-19 levels across the UK have shown, once again, that clear and transparent criteria for initiating and pausing shielding are essential to help patients understand the risk they face. The government must clarify national guidance for shielding along with the evidence underpinning shielding decisions and the process for initiating shielding. We are now seven months into this pandemic and, whilst some governments have made public some of the evidence they have received, no government has yet been fully transparent about how these decisions are being made.

Myeloma UK supports policy decisions that safeguard extremely clinically vulnerable people but, without better transparency, myeloma patients face many more months ahead of feeling trapped by concerns about safety and fears over a return to more formal shielding without proper support. We are calling for the Oxford COVID-19 risk prediction model to be published as soon as possible.

But this isn’t the only potential complication to arise from lack of clarity and a variance in approach. 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 myeloma patients across the country can continue to receive the best possible treatment and care.

The survey shows that one fifth of first line and approximately one third of second line patients had their HDT-SCT deferred due to the pandemic – and of those, 57% are still waiting for those procedures to be rescheduled. Those patients need to have their situation recognised and addressed by the national and Cancer Alliance cancer recovery plans and HDT-SCTs returned to full capacity across the country.

Looking to the future, 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. This is potentially one of the greatest and most complicated legacies from this pandemic that we in the myeloma community will have to manage in the years to come. We need to collect data to understand the scale of the problem to ensure that we have the resources to treat 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. The survey shows that this caution and patience has paid off for the myeloma community and, in so far as we can measure it at this time, the number of patients who have tested positive for COVID-19 is very small. Nonetheless, patient concerns about infection remain very high and we believe that the NHS must ensure sufficient testing capacity during the winter to provide safe clinical environments for myeloma patients.

We cannot afford to take our foot of the pedal when it comes to keeping our community safe and supported. We will continue to push for more clarity and consistency to ensure the myeloma community continues to receive the treatment and care they need.

You can read the full report here.