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Myeloma UK tells UK Parliament Groups: Protect patients, protect treatments, protect families

Patient advocacy news // 4th August 2021

Myeloma UK has submitted evidence to the inquiry into the impact of COVID-19 on blood cancer services, led jointly by the All Party Parliamentary Groups (APPGs) on Blood Cancer and Stem Cell Transplant.

The inquiry, set up to look into how blood cancer services recover from the pressures placed upon them by the COVID-19 pandemic, has invited evidence from the UK Government, NHS England, patient organisations, pharmaceutical companies and healthcare professionals. The inquiry is examining a number of areas, including vaccine efficacy, diagnosis, waiting times, treatment, stem cell transplants, NHS safety and staffing, and clinical trials.

The Myeloma UK evidence, informed and developed by the Myeloma UK Advocacy Partner Panel, calls for patient safety and protection to be embedded into government planning as the UK moves through the pandemic and measures continue to be relaxed.

With recommendations in all of the key areas, the evidence outlines essential measures to protect patients on a long-term basis. These include government investment in increased and sustained research on vaccine effectiveness for blood cancer patients; pushing myeloma patients and their families higher up the list for future booster shots by prioritising vaccine distribution by response and not demographic group; and the provision of proper financial care and support, including the right to be granted home working where possible.

The paper restates Myeloma UK’s support for the Blood Cancer Alliance (BCA) call for the appointment of a senior government official to provide direction across policy areas including health, welfare and employment on behalf of people who are clinically vulnerable to COVID-19.

The evidence also lays out critical measures to ensure patient safety. These include a call for a plan to ensure COVID-19 free spaces for treatments; guaranteed PCR testing for all myeloma patients having to attend hospital; and developing a patient-led approach to the use of tele-medicine for myeloma patients.

Access to treatment is given an important focus, with Myeloma UK calling for an NHS guarantee that no patient is disadvantaged by having to move to an alternative treatment as a result of the pandemic. This is supported by further recommendations covering the protection of alternative treatments for as long as they are required, with patients continuing to be able to re-join the treatment pathway at the point at which they left, where clinically appropriate.

Commenting on the evidence, Chief Executive Laura Kerby said:
Decision makers need to understand that patient protection and safety measures are not a switch that we can flip on and off. For as long as the pandemic impacts health services, there is nothing close to a freedom day for the myeloma community. Patients have to have confidence that their needs will be recognized and safeguarded by future government planning across all departments. Our evidence, developed directly in consultation with patients, offers clear and practical changes that can be mainstreamed to support patients now and in the future.