Voluntary Roles (past and present):
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Ambassador, MS Society UK
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Ambassador, MS Trust
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Ambassador, Sue Ryder Nettlebed
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Patron, Chilterns Neuro Centre
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Ambassador, ADD International
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Various roles, Asian MS
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Patron, Huntington MS Therapy Centre
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Governance Board Member, MS Centres of Excellence (MS Society)
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Advisory Board Member, Patient Information Forum
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Good Publication Practice Steering Committee, International Society for Medical Publication Professionals
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Co-Chair, Working with Patients & Communities Forum, The Faculty of Pharmaceutical Medicine
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Ambassador, ParaDance UK
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Steering Committee Member, MS Research Network, MS Society UK
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Member, EDI Reference Group, MS Society UK
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Patient Ambassador, Lyfebulb
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Stop MS Champion, MS Society UK
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Member, Technology Forum, MS Society UK
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Patient Engagement Editor, DIA Global Forum, Drug Information Association (DIA)
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Member, Patient Advisory Panel, Therapeutic Advances in Drug Safety, Sage Publications
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Editorial Board Member, "Neurology and Therapy," Springer Nature
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Member, "Road to Equality" National Taskforce on Diversity in Clinical Trials
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Member, European Advocacy & Outreach Committee and Patient Engagement Taskforce, ISMPP
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Member, ISMPP EU Meeting Planning Committee, ISMPP
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Co-production Group Member, Neurological Alliance
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Patient Communication Advisor, "The Research Post"
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Member, “Educate the public on data privacy and data sharing in clinical trials” working group, PHUSE
Public Speaking
Growing up, I was always incredibly shy. I still am a natural introvert, however, very soon after my diagnosis I discovered that when you have a passion and something you feel needs to be said, it can make you step out of your comfort zone. Public speaking used to terrify me. Don't get me wrong, I still get nervous, I think that's only human, but I thoroughly enjoy being able to connect with audiences, both in-person and virtually, and seeing how what I say impacts them and drives them to action or a change in thinking. Here's just a small sample of the over 200 events that I've spoken at or been the host for, and what I've talked about.
“Giving patients a voice at scientific congresses,” NetworkPharma TV/Medcomms Forum webinar
Can health literacy best practices in publications fuel innovation in patient-friendly electronic package information (ePI)?” ISMPP U webinar
“Shared Experience: Who Cares? How can we better support caregivers to improve patient outcomes?,” Healthcare Communications Association webinar
Volunteers Workshop – “Why volunteer?, MS Society UK's MS Life event
“Why should businesses engage in volunteering,” Berkshire Means Business event
“Tackling challenges positively when living with MS," MS Society 'Living with MS' information event
“The importance of safeguarding people with disabilities,” Parliamentary launch of the Safer Sikhs Partnership by the Sikh Council UK
“Calling for Backup – Support networks for young people with MS,” European MS Platform's 'MS Sessions' conference
“New collaboration models with regulators and patients – digital health,” Drug Information Association's European Meeting
“Living Positively with MS and Patient Advocacy,” internal meeting for World MS Day at a global pharma company
Campaigning
Throughout my advocacy work, I've actively campaigned for better services, information and support, dedicating my efforts to press for change for patient communities. My involvement has allowed me to listen to the needs and concerns patients, ensuring their voices are heard and represented. By collaborating with various organizations and stakeholders, I strive to create a more supportive and responsive healthcare environment. Together, we can make a difference and improve the quality of care for all patients. These are some of the campaigns I've been involved in....
