Firstly, a huge congratulations! How did the OBE come about?
The short answer is I really don’t know, but I do have my suspicions. I recall a conversation with someone who is kind, with a stout heart and is generous in every way, someone I respect and admire for all these things.
What I can share with you is how I found out. It was Saturday 11 May. My dearest friends were staying with us. I wanted to introduce my girlfriend to my latest foodie find, a veritable treasure trove of coffees, ingredients and specialty produce. Off we went like two schoolgirls who had bunked off early as we had left the men behind. Having devoured a delicious coffee and crème brûlée doughnut, we headed home.
My husband told me there was a letter from the taxman, but I thought that could wait. A while later I looked at the envelope to see it was marked ‘The Cabinet Office’. That certainly piqued my interest. Everything went silent and all eyes were on me! I really couldn’t believe it. I could do nothing but share the news given the circumstances, but all were sworn to secrecy until the embargo was lifted. The biggest challenge for me was keeping it from my mother, who is 95.
Since the list was published, there has been no need for a communications or PR officer as my mother is filling that role with gusto! So many people have been enormously kind, in gesture and word.
I very much see this as recognition of the work Epilepsy Scotland has done; the commitment, drive and passion of all in the team who work tirelessly to make the lives of those living with epilepsy better. I include our volunteers and Trustees as without them, that collective effort we would not achieve nearly as much.
Can you tell us about your career and how you came to work in the field of Epilepsy?
My career to date has been interesting and, to be honest, I never used to think about working in epilepsy. I trained as a general nurse and midwife. My dream job was as Ward Sister (it was a long time ago) in gynaecology. I left clinical nursing and entered the world of quality assurance. I moved from the NHS to the private healthcare sector in London, still in quality assurance, which was not my dream job. I became a junior partner in an occupational health consultancy and a homecare provider.
I had my daughter in 1992 who at the age of 10 months presented with uncontrollable seizure activity. After years of uncertainty, regular hospitalisations, far too many blue light journeys, episodes of status convulsive and non-convulsive, and all the general horribleness that can be associated with epilepsy, she was finally diagnosed with PCDH19. That brutal introduction to epilepsy and a conversation with Professor Sameer Zuberi, who was my daughter’s neurologist at the time, led me to Epilepsy Scotland.
Please tell us more about the work and impact of Epilepsy Scotland
I started at Epilepsy Scotland as a sessional trainer, travelling the length and breadth of the country raising awareness of the condition, training care givers and others in managing difficult epilepsies and the administration of rescue and emergency medication. I was then training manager, and in 2009 became CEO.
I am, yet again, in my dream job. No two days are the same. Like any other job, there are ups and downs. I meet so many lovely people, with reservoirs of resilience which never cease to astound me. It is they and their resilience whilst living with epilepsy, that strengthens my resolve.
Some of the many highlights for me include:
So much has been achieved in the 70 years Epilepsy Scotland has been offering support to those with the condition, but there remains so much more to do. I look forward to being part of that work for the foreseeable future.
And finally, why did the Epilepsy Scotland become a Founding Partner of the Epilepsy Research Institute?
Becoming a founding member of the Epilepsy Research Institute was an easy decision to make. It can be hard to ensure the voices of those with epilepsy, and those whom it impacts, are heard. It is essential that we make significant advances in identifying causes, the development of new diagnostics and new treatments. A strong collaborative voice – based on the experience of many knowledgeable people at every level – can only help to bring epilepsy to the attention of research investors, decision makers and the public, with all the resultant benefits.
Working with everyone at the Institute is fascinating, inspiring and enjoyable. The passion is tangible, the commitment undeniable and the potential for success equally so.
Building on the strong working relationship already established, we are currently organising an event with the Epilepsy Research Institute, bringing researchers in Scotland together to learn more about the different aspects of work of and opportunities to be accessed with the Institute. I anticipate it being successful on all levels.
