Introducing ALK Positive UK: Founded by Debra Montague

Editor’s note: we are actively seeking to feature ALK-positive patient-led groups and organizations from around the world. If you are the leader or founder of such an entity and would like it featured in our newsletter, please contact Duncan Preece at duncan.preece@alkpositive.org).

 ALK Positive UK

The Start

Debra Montague was diagnosed in October 2016 and joined the world-wide ALK Positive Facebook support group.  She came to realise that there was a need for a UK group to address issues that are specific to UK patients, e.g. the National Health Service, the Driving Licence Regulator and the Drugs Approval Regulator. In July 2018, she gathered together 18 UK patients, and a charity was formed in December of that year.  From that small group, the Support Group now has a membership of 750, patients and close family.  Professor Sanjay Popat, one of the world’s leading ALK+ experts, is our Clinical Advisor.

Our Focus

We quickly decided that we should focus on supporting patients, empowering them to be expert patients and to advocate for best practice wherever they may live in the UK.  We decided that we wouldn’t raise funds for research as other charities, in particular ALK Positive, Inc, are very successful at fundraising and we felt that it didn’t make sense to compete.

We have produced a range of advice and guidance publications, all of which are available on our website at www.alkpositive.org.uk. We recognize that lung cancer nurse specialists are key to reaching patients and we promote the support that we can give to their patients.

We have a Medical & Scientific Panel and a Driver Licensing Panel to advise the Trustees.

We have a team of twelve volunteer Regional Ambassadors who arrange quarterly subsidised lunches for patients plus one.

Campaigning

We collaborate with other relevant charities and produced an award-winning campaign entitled “See Through the Symptoms” aimed at raising awareness in primary healthcare providers about cancer in non-smokers. We also conduct an extensive social media campaign during Lung Cancer Awareness Month.

We carry out surveys of our members to provide real-world data that we can use to promote best care.

Networking

We network with many other relevant UK and European organisations to raise awareness of ALK+ lung cancer.  We are considered the voice of ALK+ patients in the UK and a recent survey of our stakeholders produced a very high Net Promoter Score.

Annual Conference

We held our first weekend conference in 2022 and 100 patients and close family attended. The conference was free to all delegates and the charity also paid travelling costs.  Delegates heard from and questioned the UK’s leading ALK+ experts and there was ample time for socializing, to exchange experiences and make new friends.

140 delegates attended the 2023 conference and 170 attended in 2024. We are planning for 200 delegates in 2025.

The Future

The Charity is heavily dependent on input from the Trustees, and we are now taking steps to put it on a more sustainable footing.  We have recently appointed a manager to review and professionalize all our processes and procedures.

We rely on fundraising by our members and will be seeking ways to broaden our income base.

However, we are determined to remain a patient-focused and patient-led charity.

Author: Duncan Preece