Me & My Shadow: putting patients first
It was a "transformative" day for 26-year-old epilepsy advocate Lucy as she spent time shadowing the Patient Safety Commissioner in the heart of Westminster.
Lucy, a New Yorker who has lived in London since 2021, was diagnosed with epilepsy two and a half years ago and has since set up a blog to share her story with others.
And on Wednesday, Lucy had what she described as a "transformative" experience when she undertook the third of our Me & My Shadow placements.
Lucy shadowed Dr Henrietta Hughes, England's very first Patient Safety Commissioner, who is responsible for amplifying patients' voices and promoting the importance of safe medicines and medical devices.
Dr Hughes has long been an advocate for patient safety, including within the epilepsy community. In October 2022, we were pleased to present her with our Safe Mum, Safe Baby petition calling for investment in safer treatments for pregnant women with epilepsy.
And we were also delighted that Henrietta agreed to take part in Me & My Shadow, our scheme where young women with epilepsy shadow inspirational leaders from science, business, politics and the arts.
On the day, Lucy had the opportunity to visit Henrietta in her Westminster office, to have a tour of the area and to attend a webinar on 'Exploring options for safe use of sodium valproate in clinical practice'. Lucy also attended a meeting with Henrietta and her team about the investigation into redress on behalf of patients that were harmed by use of medicines such as valproate.
Lucy said, "spending the day with Dr Hughes was transformative. As a patient, I felt heard, welcomed and encouraged by her leadership. We are lucky to have an advocate like her in our epilepsy community."
The Me & My Shadow scheme hopes to both encourage young women with epilepsy to "think big" about their career opportunities and to raise awareness among senior figures of the experience of living with epilepsy.
After the placement, Dr Hughes told the Epilepsy Society: ‘It was lovely to have Lucy shadow me for the day. I learnt a lot about living with epilepsy and hope that she got an insight into my work.’
Through Me & My Shadow, the Epilepsy Society hope to build confidence and ambition in women with epilepsy and encourage them to aim high. The current scheme is aimed at women between 18 and 35, but we do hope to expand to other ages and genders in the future.
So far, women have had placements with Dr Karin Kipper, a leading epilepsy scientist, and the Rt Hon Caroline Nokes MP, chair of the Women and Equalities Select Committee in Parliament.