Leading a rare patient group


Our latest workshop on the 22nd January focused on the topic of leadership within a rare patient group. We all know that leadership is a skill we should be very aware of and try to be good at but sometimes it’s hard to know how to start thinking about your own leadership skills. In a patient group context when employees and volunteers are often busy with other things, leaders don’t always have time to reflect on and improve their practice. Which is why our workshop was designed to allow patient group members to reflect on others and their own experiences and set goals for improving their leadership going forward.

The day started with our leadership panel, Lucy Mckay (Medics4RareDiseases), Jared Griffins (Annabelle’s Challenge), Michaela Routledge (Pitt Hopkins UK) and Becky Hardiman (FragileX Society) sharing their leadership experiences and challenges. This was followed by group activities in which the groups were asked to share insight into how they would deal with different challenges and leadership scenarios.

In the afternoon we were excited to have leadership expert, Julian Stanley run a session on how to hone your leadership skills and work on your weaknesses to become a better leader.

Becky Hardiman- CEO, The FragileX Society

Our first speaker, Becky Hardiman, the CEO of the FragileX Society shared some of the challenges she faced when she juggled a pHD with the full time CEO role. She also shared some of her high points whilst in the role and the opportunities it has given her. Her top leadership advice was to always be candid in your abilities, as no one knows everything and that’s okay.

Jared Griffin - CEO, Annabelle's Challenge

Jared Griffin, the CEO of Annabelle’s Challenge then shared some of the successes he and the team at Annabelle’s Challange has achieved, along with some of the difficulties they have faced along the way. Jared stressed his commitment to always striving to find the ‘better way’ for VEDS patients and the pressure this commitment can sometimes put on his family and personal life. He also emphasised how important it is for leaders to look after their own mental health as well as that of their employees and beneficiaries.

Michaela Routledge - Chair, Pitt Hopkins UK

Michaela Routledge, the chair of Pitt Hopkins UK then shared her experiences as the leader of a patient group. In particular Michaela focused on the challenges of being able to delegate effectively and choose trustees with the suitable skills. Michaela also focused on some of the great things that are being achieved by Pitt Hopkins UK and how these successes have come about.

Lucy McKay - CEO, Medics4RareDiseases

Lucy McKay shared her experience as the ‘accidental CEO’ and someone who had grown up surrounded by a rare disease patient group. She has an interesting perspective due to her multiple identities of rare disease sibling, medic and CEO. Her journey centred on both leading and being lead by others as she learnt and is still learning how to lead a unique group and educate medical students about rare diseases.

Julian Stanley - Director, Clear Thinking Consultancy

During the afternoon, Julian Stanley took the wheel to encourage attendees to get thinking about their own leadership styles and how they could improve on areas they felt were lacking. The interactive session focused around core leadership values such as empathy, integrity and self awareness as attendees discussed why different strengths were key in different situations and how these alter from person to person. A key message was that leadership is subjective and it is therefore important to reflect on what works for you as an individual. Julian also emphasised the importance of looking after your mental health when in a leadership position and he offered some guidance and strategies for how to do this.

With thanks to