Sheila Jones Award
A patient advocate award
E.S.PKU Conference 2024
The Story of the "Sheila Jones Award"
The Sheila Jones Award was initiated by the E.S.PKU in 2017 - first awarded in 2018. As there are many awards for professionals and scientists but none for patient advocate E.S.PKU saw the need to initiate this.
The family of Sheila Jones and her families story are stonefly tight to PKU. If you haven't watched the video yet you should do so immediately to understand the importance of her story and this award.
Winners
2024: Kate Leoroyd and Caroline Graham
Changing government healthcare policy requires determination and resilience. Kate Leoroyd and Caroline Graham from the United Kingdom National Society for Phenylketonuria (NSPKU) demonstrated this commitment over ten years in advocating for Sapropterin (BH4). This drug, despite being licensed in 2008, was not funded by the National Health Service (NHS). They worked to change this by understanding the NHS drug commissioning processes, highlighting the lack of "quality of life" considerations in assessments and gathering evidence through surveys. They mobilised NSPKU members, contacted politicians and formed an All Party Parliamentary Group to address the unmet needs of PKU patients. Their efforts led to BH4 finally being made available on the NHS for patients in England, Scotland and Northern Ireland. The NSPKU’s success has inspired other organisations and strengthened their role in advocacy.