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Myeloma UK launches new panel to help shape advocacy work

Myeloma UK has launched a new panel for patients, family and friends with a focus on making the patient voice count with key decision makers.

Patient advocacy news // 30th November 2020

Myeloma UK has launched a new panel for patients, family and friends with a focus on making the patient voice count with key decision makers.

The Advocacy Partner Panel (APP) will help shape Myeloma UK advocacy work with the people who have the power to make a difference including politicians, Government, senior figures in the NHS, drug approval bodies, and industry.

Shelagh McKinlay, Head of Patient Advocacy at Myeloma UK, said “ Our advocacy work relies on myeloma patients, family and friends sharing their experience and insight with us. The APP will help us to amplify the patient voice with key decision makers and will help us to ensure that the needs and priorities of patients are at the heart of what we do.

“If you think your experience could help us to make a case for new myeloma treatments, explain the importance of early diagnosis or make sure that our evidence to parliamentary bodies gets it right about what matters to patients, then we would love to hear from you.”

Panel members could be patients, family or friends who have an interest in policy and influencing and who have good communication skills. We are looking for people who can listen to and engage with others, and who can be objective but still represent the needs of myeloma patients and their family and friends.

Advocacy Partner Panel members will share their insight, views and experiences on important issues in myeloma and will have opportunities to:

  • Help Myeloma UK shape our future advocacy work programme
  • Work with Myeloma UK in engaging with external stakeholders such as parliamentary groups and drug approval bodies, attending meetings and taking part in workshops
  • Share personal experiences of myeloma and services for media opportunities
  • Respond to requests for comment and feedback on consultation documents and responses
  • Participate in both Myeloma UK and external events and meetings

The APP plans to recruit 15-20 members initially and aims to reflect the diversity of the myeloma patient community. There is a selection process. For more details on the panel and the application process please visit our APP page.