Meet Our Sounding Board
Lucy DixonLucy 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.
Philippa Williams is the parent of a young adult with a rare genetic condition caused by a mutation in the ARID1A gene. It took 12 years of visits back and fore to the genetics department at the University Hospital of Wales before a diagnosis was made and the gene causing her child’s difficulties could be identified.
She has previously been a service user/carer representative on various NICE Guideline Development Groups on topics varying from ADHD to Enuresis. She has also worked as a carer representative on the MA in Social Work at Cardiff University and spent some time as Chair of the Programme Management Board.
Philippa has a personal and professional interest in fostering, adoption and supporting those with learning difficulties. In particular she is interested in how we monitor genetic conditions within families who are not biologically related.
An awareness of how we get young people’s voices heard directly, rather than through their parents or carers, is something Philippa is very interested in.
As well as awareness raising with the professionals working across the Genetics Partnership in Wales, Philippa is also proud of the work Sounding Board Members are doing in relation to the designing and commissioning of services for the new GPW premises.
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.
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 .
Following an unexpected diagnosis of myeloma in 2014, Claire continued working. In June 2015, she was diagnosed with HER2+ breast cancer. Following breast cancer treatment, she left paid employment in 2017. Claire now volunteers for public involvement activities to use the skills gained during employment to support vital initiatives like Genomics Partnership Wales.
She applied to join the GPW Sounding Board because she wanted to learn more about the potential for progress that genomics research and medicine offers.
Claire is sports mad, competes in half marathons and ran every day during breast cancer chemotherapy. She loves helping people gain enjoyment from running. She swims regularly and enjoys many sports; which help her deal with the stress of living with myeloma.
Since 2017, Claire has held several public involvement roles, including being part of the GPW Governance & Sounding Boards; a member of the Cancer Grand Challenges Advocacy Panel; part of the CRUK project aimed at improving early diagnosis rates & several research study steering groups for Cardiff & Swansea Universities. She recently joined The All Wales Medicines Strategy Group as a Lay Member - AWMSG advises Welsh Government about the use, management and prescribing of medicines in Wales.
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.