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Myeloma UK CEO tells Scottish Parliament COVID-19 meeting: “ We cannot allow myeloma patients to become a forgotten group”

Other News // 29th May 2020

The CEO of Myeloma UK yesterday set out priorities for ensuring myeloma patients get the best possible treatment and care during the COVID-19 pandemic, during a special meeting of the Scottish Parliament Cross Party Group on Cancer.

Joining other expert witnesses, including Professor Jason Leitch, Clinical Director of NHS Scotland, Myeloma UK CEO Laura Kerby emphasised the challenges faced by myeloma patients and their clinical teams:

“Myeloma patients are deemed to be extremely clinically vulnerable and are being asked to shield at home. This means that living with myeloma and living with the risk of COVID-19 are inextricably linked. It affects not just treatment care, but every aspect of patients’ lives. The need to reduce COVID-19 risk for myeloma patients has had a major impact on myeloma treatment. Many will have had their treatment changed or been put on a treatment break.

Stem cell transplants are important for around one third of myeloma patients and these are not taking place; other than for a small number of patients who are at higher risk from their myeloma. Treatment options are restricted still further by the suspension of all clinical trials.”

MSPs were also briefed on the impact of reduced diagnosis rates in myeloma and the implications of social distancing in chemotherapy outpatient clinics; busy clinics of normally 20-30 patients may only be able to see six to eight patients at a time.

Kerby was clear to MSPs about the priorities for recovery, outlining the need for:

  • 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 thinks they will benefit
  • Clean sites for chemotherapy
  • A more transparent and inclusive process for developing shielding guidance
  • New models of community treatment
  • Restart of clinical trials
  • Restart of the Scottish Medicines Consortium
  • Data on diagnosis rates and modelling the impact to services of delayed diagnosis
Laura Kerby

Laura Kerby

Kerby thanked NHS staff for their work during the pandemic and recognised the huge efforts that have been made to ensure that patients continued to receive treatment. Commenting on the meeting, Kerby said:

“The burden facing patients and their families cannot be better expressed than in a response we received to our current COVID-19 patient survey.  A patient told us ‘ Living with an incurable cancer is hard anyway. COVID-19 has robbed me of any freedom I could be enjoying at the moment. It has taken away my chance to be happy even for this period of remission.

We are having to come to terms with the fact that COVID-19 will continue to impact on the delivery of myeloma treatment and care.  This means we have to act now to embed the most effective changes and to develop new models of care to ensure that patients receive the best possible treatment.”

Myeloma UK, as part of the Scottish Cancer Coalition, has worked to ensure that the voices of myeloma patients have been heard by the Scottish Government throughout the pandemic. The Cross Party Group meeting was an opportunity for MSPs to hear directly from people representing and treating vulnerable cancer patients.

 

Contributions to the meeting will be used to help identify priorities to support transition to the next phases of the pandemic.