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Advocacy Partner Panel

Making the Patient Voice Count

What is the Myeloma UK Advocacy Partner Panel?

The Myeloma UK Advocacy Partner Panel (APP) is a collaborative group of appointed patients, carers, family and friends that helps shape our advocacy work. The 15-20 Panel members work with Myeloma UK to help make the patient voice count with decision makers including politicians, Government and senior figures in the NHS, drug approval bodies and industry.

What does the APP do?

APP members share their insight, views and experiences on important issues in myeloma with Myeloma UK and other influential organisations and decision makers

Appointments are for an initial period of three years, with members attending one to two Panel meetings each year, as well as other external events. Members also receive requests for feedback or advice on an ad hoc basis.

APP members:  

  • Help us shape our advocacy work programme
  • Work with Myeloma UK in engaging with external stakeholders, such as parliamentary groups and drug approval bodies
  • 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

What skills and experience do APP members need?

APP members:

  • Are interested in, or have experience of, policy and influencing with a desire to learn about the work of Myeloma UK and the wider policy landscape
  • Listen to and engage with others respectfully
  • Respect confidentiality
  • Understand the demands of working within a complex and sensitive policy environment
  • Have the ability to be objective and represent the needs of myeloma patients and their friends and families
  • Have good communication skills

What is the impact of the APP?

The APP provides direction and clarity to our advocacy work, ensuring it focuses on what is most important to patients, carers, family and friends and reflects their experience.

What are the benefits of becoming an APP member?

  • The opportunity to contribute to Myeloma UK’s advocacy work – Partners can share their insight and experience of myeloma with Myeloma UK and with the people who have the power to make a difference
  • Support from Myeloma UK in gaining new skills and experience – We will support our Partners by providing skills development and relevant information and hope that over time Partners develop expertise in particular policy areas that reflect their skills, interest and experience
  • Expenses – Myeloma UK will cover reasonable travel, subsistence and accommodation expenses

How can I become a member of the APP?

Anyone with personal (non-professional) experience of myeloma can become a member of the Advocacy Partner Panel, i.e. patients with a diagnosis of myeloma, smouldering myeloma or an associated condition such as AL Amyloidosis, and carers, friends and family. No experience in advocacy or policy is needed. By being personally affected by myeloma, our Partners will bring a valuable contribution through their experiences.

There is a selection process.

Apply to join the Advocacy Partner Panel below.

If you have any questions, please get in touch by emailing policy@myeloma.org.uk