What we’ve been up to!
It’s been a frantic start to the year with lots going on. We now have 735 members and there is a lot of activity both nationally and locally. We have long wanted to enable members to meet locally and want to say a huge thank you to our band of Regional Ambassadors who are making this happen. The personal benefit of connecting with others who are in the same situation is huge and organisationally, we are loving the ideas and insights that are coming from these meetings.
Survey
The annual member’s survey closed on the 27th March and we look forward to sharing the analysis in the next issues. Thank you to the 200+ who have completed the survey, it is of huge importance to us as it feeds into our advocacy work, informs our strategy and gives a vital insight into the reality of living with EGFR+ lung cancer.
Raising awareness
Know Your Biomarkers
We were pleased to be invited to present at a meeting at the House of Commons organised by Astra Zeneca. In speaking about the importance of swift biomarker testing we emphasised the dreadful impact of delays. Our call to action was for patient groups, clinicians and MPs to keep the conversation going to press for equity of access to early testing that enables patients to get onto treatment quickly.
Catch Up With Cancer Campaign
This campaign is calling on the Government and NHS to boost cancer treatments to tackle the cancer treatment delays caused by COVID. Together with ALK+ UK, the Ruth Strauss Foundation and other cancer charities we met with banners outside Westminster and then met with our local MPs to drive home the need for action. Find out more and join the campaign HERE.
Best Practice London
This was our first time exhibiting at this conference. Held at Olympia, over 2,000 primary health care professionals enjoyed a range of sessions and had the opportunity to meet exhibitors. We had great conversations with community pharmacists, physiotherapists, GPs and practice managers. As ever, too many did not know about the prevalence of non-smoking lung cancer. There is so much to do in this space!
Research
Research & Wellbeing Event – it was a joy to spend a Saturday in Manchester with 38 oncogene driven patients and their loved ones. The day is part of the study we are doing in collaboration with The Ruth Strauss foundation and ALK+ UK looking at the well-being needs of patients and caregivers. The day gave the opportunity to gather material for the study, to learn from and question Clinicians and have time to meet and connect with others. Thank you to everyone who attended, each and everyone of you makes a difference.
Ask the Expert sessions
We ran two ‘Ask the Expert’ sessions in this quarter, videos of which can be found HERE. The theme this year is to ensure we are as fit for treatment as we can be.
Cathy Sandsund, a Physiotherapist at the Royal Marsden Hospital, helped us understand the importance of exercise in building strength, minimising muscle wastage and managing cancer related fatigue. Understanding the impact that even moderate exercise has on our muscles, heart and lungs can be a strong motivator as we strive to live well with cancer.
David Rutkowski, a Dermatologist at Manchester University Hospital Trust, talked us through the science behind the side effects many of us suffer as a result of our treatment. His session helped us understand why we are plagued by skin, hair and nail issues and offered differing strategies to deal with them.
By Angela Terry, EGFR+ UK Chair