We are recruiting – why not join us?

If you’re interested in becoming a member, have a look at our Recruitment Pack and Expression of Interest template.

Our Patient and Community Forum plays an important role in supporting the work of the North East and Yorkshire Genomic Medicine Service. It ensures that the views of patients, the public, carers and families are at the heart of our work.

The Patient and Community Forum consists of members of the public with either personal experience of genomic medicine or a keen interest in genomics.

Our Forum members play an active role in challenging and supporting our work. Members receive regular presentations from clinicians working in the field of genomics and give their feedback on new developments and innovations. Working together with NEY GMS staff, they ensure that the voice of the patient is central to service developments and decision-making.

Forum members meet quarterly, alongside more frequent updates via email, to offer views and contribute on areas such as reviewing patient information, including website copy, offering input into the development of our podcast series, giving feedback on projects and providing insights into how best to incorporate the patient voice into workstreams.

Meet some of our Forum Members

We’re a friendly bunch! Please get in touch if you have any questions.

Jeanette Thorpe, Forum Chair

Jeanette joined the Forum in 2022 and became Chair in October of the same year. She has retained a keen interest in genomics following many years in operational management including a part-time role as Engagement and Promotions Lead for the Yorkshire and Humber Genomic Medicine Centre (a pre-cursor to the NEY GMS). Jeanette now works in a research management role in Leeds and is a lay representative on the NEY GMS Research & Innovation Steering Group. She also represents the North East and Yorkshire on the national NHS England People and Communities Forum, attends the NEY GMS Extended Partnership Board and GMSA Team Awaydays to ensure that the ‘patient voice’ remains central to business plan delivery.

 


Angela Watt, Forum Member

Angela has been a member of the Forum since 2022. She has a keen    interest in genomics because five generations of her family have been affected by a rare genetically inherited kidney disease, but it was only in 2020 that they finally received a diagnosis thanks to the work of an academic nephrologist in Newcastle who specialises in inherited kidney diseases.

Angela also has experience as a healthcare professional – and worked as a specialist nurse looking after patients with rare diseases. She joined the Forum with first hand experience of how genomic medicine can not only provide patients with a definitive diagnosis, but also lead to new treatments. Angela represented the Patient Forum at the national Genomic Healthcare Summit in London in December 2023. Read more about her experience here


Patrick Mayne, Forum Member

Patrick Mayne joined the Forum in 2022 and has been an active member ever since. He became a ‘patient’ at the age of one when he had polio and, although he has never directly experienced genetic testing, he is very interested in genomics and (in his own words) brings “a fresh mind and a patient perspective to the work” of the NEY GMS. Adding, “I think we have only just scratched the surface and I am fascinated to learn as much as possible. When I saw that the NEY GMS was recruiting to their Patient and Community Forum, I immediately saw an opportunity to learn more”.

Patrick is involved in a number of patient groups and research projects within his local community and is the Chair of the North of Tyne and Gateshead Cancer Patient Collaborative Group.

Recent Forum Meeting Topics

April 2024

In our April meeting, two guests from the NEY GMS team attended to talk about the Generation Study, also know as the Newborn Genomes Programme, after which a discussion was facilitated about the ethical issues relevant to the study and wider genomics services. It was a lively debate and the Chair suggested a further update on the study would be helpful at a future meeting.

An update was then given about NEY GMS plans for 2024-25, previously reviewed by the Forum Chair, who provided feedback and comments to ensure inclusion of the ‘patient voice’ in work plans going forward.

Finally, members were asked for feedback about the NEY GMS Podcast Series and the information ‘For Patients’ on the NEY GMS website. An invitation was also extended to members to co-write an article for the next NEY GMS Newsletter. The next meeting will take place in early July.

 

Join Us

Genomics is the future of healthcare. A future that is happening right now, and the NHS is leading the world in this space. By joining the North East and Yorkshire Genomic Medicine Service Patient and Community Forum, you’ll get a chance to explore how genomics is making a real difference to patient’s lives, and help improve health inequalities and patient outcomes in the region today.