21st December 2020 // Shelagh McKinlay
Last week, both the UK and Scottish Governments released their Cancer Recovery Plans – plans that they have put in place to address the disruption to cancer services as a result of COVID-19. These proposals set out how they intend to restore demand, reduce waiting times and ensure sufficient capacity is there for cancer diagnosis and treatment. The Myeloma UK patient advocacy team fed into both the National Health Service England plan and the The National Health Scotland plan asking for investment and service redesign to benefit myeloma patients, and there are some encouraging outcomes to report.
Firstly, and as a result of the co-ordinated work done by the Blood Cancer Alliance, we were able to influence vaccine prioritisation and move the clinically extremely vulnerable group that includes myeloma patients up from sixth place in line for the vaccine to fourth place, alongside people aged 70 and over. This is an important change to make and we are delighted that NHS leaders recognised the importance of making it.
We also saw some positive movement on diagnosis and treatment. We welcome the commitment to press on with Rapid Diagnostic Centres which have the potential to help diagnose myeloma faster, and we are extremely pleased to see the continued emphasis within the plans on access to oral alternative treatments for myeloma.
But although we recognise that the continued risk of COVID-19 infection will mean doctors may still advise deferring Stem Cell Transplants for some myeloma patients, we believe that we are missing a commitment to a deferral only being acceptable for clinical reasons, and not due to a backlog of procedures or a lack of resources
So what are our next steps? We will continue to press for a specific commitment to clinically appropriate and safe Stem Cell Transplant as a priority. We will also be asking for data to be published on the number of patients using alternative approved treatments. This will enable us to measure the number of patients whose stem cell transplants have been deferred and will also tell us how changes to the treatment pathway may affect outcomes over the longer term.
We will call for research into the patient experience of video and telephone consultations. This was a significant change to the patient experience to reduce the risk of infection and, although early feedback shows this has been welcomed, we need to see how it is impacting diagnosis and treatment in the longer term. Finally, we will continue to monitor progress against the commitments in the plans and to keep pushing for better data and more resource where it is needed for myeloma.
One of the reasons we can continue to make these important asks and push for more progress is because of the responses you have given to us as part of our COVID-19 Patient, Family and Friends Surveys. More than 1900 of you have shared your experiences so far, and this has enabled us to secure important wins like alternative oral treatments to be in place as long as they are needed, and for blood cancers like myeloma to be included in a key COVID-19 risk prediction model that underpins policy decisions.
Services are starting to return to pre-pandemic levels slowly, but we are not out of the woods yet and we don’t want to slow the pace on innovation that benefits patients. We will be launching our third survey of the series in the coming months to help us understand where there are areas of unmet need and what action we need to take to address that. Keep an eye on our website and social media channels for notice of the survey launch and help us to continue to make your voice heard.