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We are one myeloma community: ensuring myeloma patients are not forgotten

23rd June 2020 // Shelagh McKinlay

“Can we jump on a Zoom call?”

Even a few months ago, most people would have answered this question with a blank look and wondered whether they could have heard correctly.

But since the COVID- 19 pandemic, video-conferencing platforms like Zoom have become a virtual meeting place for many;  not least for me and my colleagues in the Myeloma UK Patient Advocacy team.

The strange experience of video conferencing with people in their own sitting rooms, studies, and kitchens has brought home to me the remarkable opportunity we have at Myeloma UK to have “face time” with some of the UK’s most senior individuals in Government, the NHS and medicine.

These meetings always start with introductions, and my ten second pitch is always the same; “I’m here to make the voice of myeloma patients count with decisions makers.”

But what does ‘making the patient voice count’ really mean? First and foremost, it means listening. We can’t represent your interests without understanding what matters most to you – and of course we are not just talking about patients, but also about families, carers, friends, colleagues: all the people who feel the ripple effect of a myeloma diagnosis.

We are in the privileged position of hearing your stories every day through our Myeloma Infoline, Ask the Nurse email service, Discussion Forum and on social media channels like Facebook and Twitter. We also gain insight from our Patient and Carer Research Panel and from research and surveys.

In fact, this year the Patient Advocacy team launched our two largest ever surveys: one on the use of lenalidomide maintenance treatment following stem cell transplant (HDT-SCT) and the other on the impact of COVID- 19.

The response to these surveys was phenomenal – in excess of 600 people responded to the lenalidomide maintenance survey and more than 1,100 to the COVID- 19 survey. Learning from your experience through this kind of research provides vital evidence about the needs and challenges facing patients and families.

Early findings from our COVID- 19 survey, for example, has shown us that shielding does work – the number of myeloma patients testing positive is low – and that 60% of respondents feel it is necessary, but that 40% of respondents are very concerned about the impact of shielding long term.

Surveys like this enable us to understand better how individual circumstances lead to people being differently impacted by their diagnosis, as well as shine a light on what myeloma patients and their families and carers have in common.

This insight enables us at Myeloma UK to amplify the patient voice and when we speak with one voice we have a greater impact.

So when we speak, who is listening? Here we come back to Zoom and the access we have at Myeloma UK. Through us, you have a seat at the table with senior decision makers throughout the country.

In recent months we have been in meetings with senior figures in the NHS England Cancer Programme, cancer leads in devolved governments, elected members including MPs and MSPs on parliamentary cross-party groups, drug approval committee Chairs, leading myeloma clinical specialists, and senior figures from industry and research bodies. We are also in touch every week with our charity partners, working together where it matters to amplify our call for improvements in treatment and care.

And those calls need to be heard and responded to at the highest level.  Whilst we won’t lose sight of our long-term goals, myeloma patients need change to happen now in order to manage the impact COVID-19 has on their lives. Our community need to see treatment flexibility for as long as it is needed, and a guarantee that patients can return to the treatment pathway at the point they left if their doctor considers that beneficial.  We need clinical trials restarted, and all health technology approval bodies up and running as normal to ensure that myeloma patients can access the latest treatments.

And we need clean sites for chemotherapy, new models of community treatment and a more transparent and inclusive process for developing shielding guidance that gives patients and their families the confidence to access their treatment and care, to look after their emotional wellbeing, and to make decisions about family members returning to work and school.

Here in the patient advocacy team, we never lose sight of the fact that what we do one day has the potential to make a difference to the choices myeloma patients and their families can have the next day.  Speaking with patients, carers and their families is, for me and for all of us, a daily inspiration and we feel hugely privileged that you share your stories with us.

This Myeloma Awareness Week, we promise to continue to use those stories wisely, to change the minds of those who matter, and to keep making a difference.

Ensuring patient voices are heard makes a difference.