Giving hope to those affected
by secondary breast cancer

Research. Support. Education.

Patient Trustee Lesley Stephen is awarded MBE

14th June 2025 by Clare Cox

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We are delighted that our Patient Trustee, Lesley Stephen, has been awarded an MBE in the King's Birthday Honours list for services to secondary (metastatic) breast cancer.

 

Lesley, from Edinburgh, was diagnosed with 'de novo' secondary breast cancer in March 2014. She had been a self-employed communications consultant, living in Edinburgh with four children and was thrown into indescribable shock and grief. After a rollercoaster 18 months of treatment, where nothing seemed to work, Lesley joined a Phase 1 clinical trial at the Glasgow Beatson Cancer Centre which gave her seven years of stable treatment.

Despite living with incurable cancer and ever-changing courses of treatment and side effects, almost immediately after diagnosis Lesley turned her attention to patient advocacy for the betterment of others living with cancer, campaigning to get a better deal for secondary breast cancer patients who are often ignored when it comes to research, treatments and support. 

Having no science background, she faced an uphill challenge in educating herself but soon found her enthusiasm for research and passion to enable more patients to access new treatments and clinical trials. This led to Lesley becoming a Patient Trustee for the charity and took an active role in shaping the patient impact of our work through our research programme and the development of a pioneering informational and support service for patients interested in clinical trials: the Clinical Trials Service, which is truly one of a kind. 

 

“Lesley had this novel idea, to set up a unique and bespoke service for patients with secondary breast cancer enabling patients to find out more about clinical trials and for them to be able to have a clinical trial search done for them, using the many databases that are available. To date we have helped almost 1,000 people navigate the complicated world of clinical trials.” 

Retired Secondary Breast Cancer Nurse & Senior Research Nurse for Make 2nds Count for three years.

 

Among Lesley’s most notable achievements in the field of cancer research is the Breast Cancer Now Tissue Bank, where Lesley joined as a patient advocate on the Operational Review Committee. Lesley proposed that the four disparate tissue bank centres should work together, leading to the formation of the larger tissue bank known today. Lesley made changes to the tissue access policy, advocating for clear patient benefit. Today the Tissue Bank has more than 129,000 samples from almost 10,000 patients available to researchers worldwide, and has already led to new developments in the understanding, diagnosis and treatment for breast cancer.

As a patient representative and campaigner Lesley has also supported the development and approval in the UK of several new treatments over the last 10 years including Kadcyla, Durvalumab, Enhertu and Tucatinib (the latter through her involvement with the Scottish Medicines Consortium). She has also served as a patient advocate on over 25 cancer research projects.

Recently, Lesley was part of the leadership team of the Edinburgh Experimental Cancer Medicine Centre (ECMC). As part of this team, Lesley ensured that patients were at the heart of their 2022 renewal bid. This was successful leading to five years of funding that provides an essential capability and capacity for Scottish patients to access early phase cancer trials of promising new agents. 

Lesley also co-developed our Secondary Breast Cancer Patient Summit which is running for the second time next week. An idea inspired by her personal experiences attending conferences, Lesley identified a gap for a patient friendly educational event. Last year 100 patients, several nurses and 16 expert speakers attended, along with 400 people joining online. 

 

 “Lesley is without doubt one of the most outstanding, determined, kind, thoughtful patient advocates that I have ever had the privilege of working with.”

Prof Dame Lesley Fallowfield

The impact of Lesley’s work as a patient advocate goes beyond the lives of those affected by secondary breast cancer in the UK and extends to the cancer community as a whole, with wide reaching influence that will be felt for many years to come. We are really pleased that this has been recognised and Lesley will be publicly acknowledged for the work that she has done to make such an impact in our sector.

Chief Executive of Make 2nds Count, Samantha Dixon said: “At Make 2nds Count, we were absolutely delighted to support Lesley's nomination for an Honour and thrilled to hear her nomination was successful. Lesley has changed the lives of so many secondary breast cancer patients, through vocal campaigning for change and improvements and giving hope to those affected by this incurable but treatable cancer. Her insight and dedication has helped Make 2nd Count, along with partners, establish the Clinical Trials Service, which helps patients access treatments which might not yet be available through the NHS. She has also led the way in establishing the UK's only secondary breast cancer patient summit.”

Lesley said: “I'm delighted and honoured to receive an MBE for Services to People with Secondary Breast Cancer and to Cancer Research. When I was first diagnosed in 2014 I never thought I would still be here all these years later.  I have used that time to be the voice for patients who are doing less well than me, and who often feel forgotten and left behind when it comes to breast cancer care and treatments.  

I'm especially proud of some of the unique services that I've helped to develop for those patients - a trial matching service and an annual conference - which has supported, educated and empowered them. It's wonderful to have recognition of the work that I have done with Make 2nds Count and other charities, and the award will also be an amazing legacy for my family in the future.”

Photo credit: Andrea Thomson