Meet Our Sounding Board

Here are some of our current Sounding Board members

Karen Shepherd

Karen was diagnosed with Parkinson’s in 2009 which was the catalyst for her passion for health research. Research has improved her understanding and knowledge and given me confidence to question and follow a proactive approach.

Karen is also a carer for her  Autistic son, which has enabled her to gain personal experience of the challenges also  facing carers , working  within a special Primary school as member of  Staff , School  Governor enabled her to share multi perspective input for complex health conditions.

As Service user representative on the N Wales neuroscience Board, Karen  has gained experience of working at all levels ensuring a patient focus to all discussions. I am an active  member of Health & care research wales  particularly Parc Bangor PPI group  working  collaboratively with researchers ,scientists and health boards to ensure research is focussed on the needs of the people.

Karen joined the Genomics sounding Board last year where she feels valued ,  its strength is in bringing Scientists, Researchers , academics and policy makers together with service users & where Patients and the public have a prominent voice in designing and securing world class research that will secure health services for the future  for all  the people of Wales .

Lucy Dixon

Lucy has a rare, genetic disease called Primary Ciliary Dyskinesia (PCD) and has been involved in patient advocacy and research from a young age. She is Chair of PCD Support UK, sits on the board of the BEAT-PCD Clinical Research Collaboration network, and is a lay member of the Partnership Group of Population Research UK. She is interested in patient advocacy and tackling health inequalities, and is excited by the transformative realities of genomics for advancing the understanding and management of our health.

Amanda Pope

Amanda is a mother of three adult girls and soon to be a grandmother for the first time in July 2021. She has worked for the NHS for sixteen years as a trainer of clinical systems, and currently in a workforce and organisational role supporting the staff of my current organisation. She is also studying to become a counsellor and hope to do this as a future profession, having a great interest in how the mind  works and supporting people in need.

Amanda became interested in getting involved in Genomics as she has a family history of breast cancer and mental health conditions, and wanted to learn more about this area.  Amanda’s mother and mother’s sisters all had breast cancer, and her older sister was found to have the breast cancer gene.

Although Amanda herself was tested for the gene, she was found not have it.  However, three years later she developed breast cancer which was unrelated to this. After surgery, chemotherapy, and radiotherapy she joined Velindre Cancer Centre Patient Liaison Group in 2018 as a passionate advocate for patient care. It was also an opportunity for her to give something back to the NHS.

She learned about the Genomics Partnership Wales Sounding Board and as someone with a vested interested in genetics, thought it would be another area in which she could offer support and input. She has enjoyed learning about and contributing to the ongoing Genomics work in Wales.

Louise became particularly interested in the work of GPW and the Sounding Board when her son was diagnosed with a rare disease at the age of one in the summer of 2019. It was a genetic test that picked up the condition and the whole family became more interested in the field of Genomics and the world-leading work being done in Wales. 

When asked about the impact the Sounding Board has on the overall GPW programme Louise said, 'The work of the Sounding Board is so important; as it does just that - provides a sounding board. It allows the experts, who are designing services and seeking views on new initiatives, to test ideas out on a 'critical friend'. The diversity of the members creates a really important mix of views and ideas.

Siân Phipps

Siân worked for thirty years in the public sector in Leeds, London and Cardiff, before being diagnosed with leiomyosarcoma in 2015. As part of her road to recovery she solo walked the Wales Coast Path between September and October 2016 in aid of Cancer Research Wales and later became a Patient Leader at Velindre Cancer Centre.

Siân was a lay member on NICE's committee on shared decision making, ensuring that patient needs were central to a new guideline aimed at mainstreaming shared decision making into health and care services. Sian joined the Patient and Public Sounding Board of Genomics Partnership Wales for the same reason - to ensure the voices of patients and their carers are heard in the development of Genomics policies.

Siân was until recently an advocate for water consumers with the Consumer Council for Water and she is currently the Wales member on the Communications Consumer Panel, whose role is to advise Ofcom and government on communications issues as they affect UK citizens, particularly older people, people with disabilities and those on low income.

Siân was born in Cardiff and lives there with her husband, Dan and border terrier, Ziggy.

Louise Wilkinson

Louise lives in Pembrokeshire, West Wales, and has worked for PAVS (Pembrokeshire Association of Voluntary Services) for 17 years. Holding a number of positions in that time Louise is currently the Volunteering Development Officer supporting organisations and individuals across Pembrokeshire. Louise enjoys trying new things which in the past has included learning Mandarin in Beijing, undertaking a charity skydive, and completing 3 Masters degrees.

Louise became particularly interested in the work of GPW and the Sounding Board when her son was diagnosed with a rare disease at the age of one in the summer of 2019. It was a genetic test that picked up the condition and the whole family became more interested in the field of Genomics and the world-leading work being done in Wales. 

When asked about the impact the Sounding Board has on the overall GPW programme Louise said, 'The work of the Sounding Board is so important; as it does just that - provides a sounding board. It allows the experts, who are designing services and seeking views on new initiatives, to test ideas out on a 'critical friend'. The diversity of the members creates a really important mix of views and ideas.