Creating the Space for Collaboration and Learning
Over the past 25 year, my activities have spanned working in hospitals, through commissioning healthcare services to serve as a patient advocate. The real-world experiences of how specialised clinical services are set up and delivered has been the foundation for my work as a patient advocate at National, European and international level.
At the end of the 1990s, I made the step from the creative world of art and theatre into healthcare, making the shift from engaging audiences, actors and directors to working with patient communities, clinicians and commissioners. The skills and competencies I gained in the arts have been a valuable asset to my work in the health sector, and I use my creativity on a daily basis, in strategic thinking and system transformation.
Commissioner Perspective
In the 2000s, I was an administrator and manager in a busy mental health trust in Central London working in mental health units which provided lessons in humility and humanity, and how health systems impact people’s lives for better and, unfortunately, for worse. Since that time, I have been passionate about healthcare systems, as living, dynamic networks and remain curious about their behaviour and what enables them flourish. Working in hospitals, I gained a solid understanding of the day-to-day challenges of running healthcare services, which I drew upon in 2005, when I made the transition from a Hospital Manager to Commissioner, working in Planned and Emergency Care.
Towards the end of the 2000s, I was a National Commissioner for Highly Specialised Services and Ultra-Rare Conditions, developing national health policies, strategies and care pathways, as well as service development and the designation and contracting of 50 Expert Centres providing 17 national services covering England, Wales and Scotland.
Becoming an Advocate
In 2014, I focused my work on the rare disease patient community as the Healthcare & Research Director, and later as Healthcare Advisor & Mental Health Lead, at EURORDIS Rare Diseases Europe. For over a decade, I have been active in the rare disease advocacy space, both at a European and international level. Drawing on my experience commissioning expert centres and developing national clinical networks in England, I led the development of clinical networks, specifically supporting the development of 24 European Reference Networks (ERNs) from concept to operational networks, placing 300 patient advocates at the heart of the networks.
Building on the proof-of-concept of the ERNs, working for Rare Diseases International, I engaged with an international panel of experts from over 100 countries to scope the concept model and operational framework for a Global Network for Rare Diseases. Central to the development of these networks has been the needs of the rare disease community and service improvement, specifically through the development of methodology with a focus on patient journeys, guidelines and care pathways.
Strategic Consultant
For a decade now, I have been a Strategic Consultant in rare disease advocacy and policy, clinical networks, guideline, patient journey and care pathway development, and evidence-based systematic reviews of orphan medicine products. I have led and co-developed webinars, workshops and events (NGO side-event to the 75 th WHA 2022), conferences as well as being a speaker and panellist at international conferences including the European Conference of Rare Diseases (2014-24) and a speaker in ATMP webinars, panel diseases and event for TRANSFORM, EUCOPE, WODC Europe (2021-24) & ARMs Meeting on the Med (2023-24).
Through bringing together first-hand experience of front-line clinical services and commissioning expertise, coupled with my expertise in patient engagement and advocacy, I have developed a strong track record in organisation and network development, service improvement through developing guidelines and care pathways, as well as growing portfolios and securing grants, sponsorship and funding.
