Our People & Communities Forum

We are very grateful for the many people who are part of our People & Communities Forum

Every day we strive to do better. Thankfully we have a wonderful group of people who work with us to ensure we are hearing from a range of people about their experiences and views of our service.

Our People & Communities Forum is made up of a group of people who have a range of experiences and approaches. It is important that their voices are heard clearly in every corner of our service.

By working together we can improve our service for everyone.

What does our Forum do?

Meet our People & Communities Forum

Alison Fielding

Alison Fielding is the Chair of our People & Communities Forum.

Her interest in genomics stems from her own personal experience. When Alison was diagnosed with cardiomyopathy (also known as heart failure) in 2011, her family were offered genetic screening because the condition can be inherited. The genetic tests revealed that her Mum also had cardiomyopathy. Alison also has personal experience of genomics and cancer and is currently dealing with her own cancer diagnosis.

Alison combines her unique personal experience, with her skills and knowledge in her role as Chair. As a proactive patient advocate, she is actively encouraging more people to get involved in the world of genomics and is instrumental in helping us to raise awareness and understanding of genomics.

Miranda Ashitey

Whilst Miranda was waiting for the results of her genetic testing, she decided to learn as much as possible about genomics and the links between cancer and our genetic make up. This new knowledge proved to be very powerful.

Since then she has used her own personal experience and her passion for ensure people of all ages, ethnicities and sexualities have a voice and equal access to genetic testing.

Claire Whitehill

Claire first came across genomics when her youngest daughter was invited to be part of the 100,000 Genomes project which sequenced her whole genome. It was only then that Kirsty was diagnosed with a rare genetic condition called Okur-Chung Neurodevelopmental Syndrome. Since then Claire has been actively involved in raising awareness of Kirsty’s condition and encouraging more people to get involved in genetic research.

Emma Jenkins

Emma has a common genetic condition called Lynch Syndrome. Although common, 95% of people who have Lynch Syndrome are unaware. Emma is passionate about helping people to know more about Lynch and ensuring everyone with either bowel or endometrial cancer gets screened for Lynch Syndrome.

Madeleine Meynell

Madeline was born with a genetic condition called Marfan Syndrome which affects her heart. As an adult she now has breast cancer and has been hugely involved in advocating for access to treatments and drug therapies.

Nira Muttucumaru

Nira has been a patient representative with South East Genomics since October 2021. She has brought her experience of caring for family members with cardiac conditions, alongside her professional knowledge of genomics as a research scientist. Nira is hugely passionate about ensuring everyone has equal access to genetic testing.

Sara Bubb

Sara had a cardiac arrest while wild swimming. Since then she has had many tests to try and understand what caused it. These tests, including genetic testing, revealed she has cardiomyopathy but no hereditary heart conditions. As a Mum to three children, she is delighted, but remains committed to improving the experience of people while they wait for genetic test results.

Would you like to get involved?

We’d love to hear from you. Drop Nicky a line to find out more.