NHS East Genomics BITE: Supporting people with Lynch Syndrome or a Rare Condition - 22 May 2024

A patient information session delivered in conjunction with Cambridge Rare Disease Network (CamRARE) and Lynch Syndrome UK.
The session introduced two new 'patient passports' intended to improve communication between patients, families and healthcare professionals. The idea behind both the CamRARE and Lynch Syndrome UK patient passports is to reduce the need for parents or carers to repeat information with every new contact, support individuals with learning or communication needs, and help healthcare staff understand the specific, personal medical needs and preferences of each patient.
We also showcased a new Lynch Syndrome patient app developed by a team at University Hospitals of Leicester, in collaboration with Lynch Syndrome UK.
Our speakers were Jo Balfour (Managing Director, CamRARE), Vaila Morrison (Architect, Communications and Design for CamRARE, and mum to Eilidh who was born with an ultra rare condition), Helen Bufton (Lynch Syndrome UK Trustee and Lynch Syndrome patient) and Julian Barwell (Consultant Cancer Geneticist, University Hospitals of Leicester).
00:00:00
Introduction - Ian Kingsbury, East Genomics Communications and PPI Lead
00:03:26
CamRARE Patient Passport - Jo Balfour and Vaila Morrison
00:26:20
Lynch Syndrome UK Patient Passport - Helen Bufton
00:29:36
Lynch Syndrome Patient App - Julian Barwell
Links to resources:
- www.camraredis...
- www.lynch-synd... (to request an LSUK Patient Passport email [e-mail] or complete the contact form on their website)
- the Lynch Syndrome Patient app is available to download from the Apple Store (www.apple.com/...) and Google Play store for Android (play.google.co...
*Please note that the official launch of the Lynch Syndrome app will include details of how to get an Access Codes required for registration on the app.
- Our Public and Patient Voice Panel is recruiting. Have you, or someone you care for, undergone genetic testing on the NHS for a cancer or rare or inherited condition? See how to apply: www.eastgenomi...
Our website:
www.eastgenomi...