Tag: Patient Trials Advocate service

Make 2nds Count announces Monumental Milestone

The innovative service celebrates a pivotal achievement in advancing patient access to clinical trials

Make 2nds Count, a pioneering charity dedicated to raising awareness and funding research for secondary breast cancer, is proud to announce that – championed by a generous grant from Breast Cancer charity Walk the Walk – their Patient Trials Advocate (PTA) service has so far supported 500 secondary breast cancer patients across the UK, marking a significant milestone and pivotal achievement in advancing patient access to clinical trials.

In a noteworthy collaboration, the Walk the Walk charity – organiser of the iconic MoonWalk London and MoonWalk Scotland fundraising events – has donated £79,434 to the PTA service, which was originally launched in 2021. These funds will be used to finance the full initiative for the next 9 months to a year, demonstrating the collective effort to make a meaningful impact in the lives of secondary breast cancer patients.

Nina Barough CBE, Founder and Chief Executive of Walk the Walk said: “I am really delighted to share the news of the recent grant which Walk the Walk has awarded to Make 2nds Count.

“This funding will specifically contribute towards the charity’s ground-breaking Patient Trials Advocate Service. This much-needed service is designed to bring together women with breast cancer, who might not otherwise have had access to clinical trials, and for many of whom this is the last resort of treatment.  

“By collaborating, charities can make such a huge difference to so many people, and we are incredibly proud to be supporting Make 2nds Count and what they achieve in raising awareness and funding research for secondary breast cancer.

“Whilst Walk the Walk supports its own campaigns, grants like this one are very exciting and wonderful to share with Walk the Walk’s fundraisers – I cannot thank these generous and wonderful people enough!”

Make 2nds Count’s PTA service is the first of its kind in the UK, offering fresh hope to patients by connecting them with clinical trials that have the potential to improve outcomes and extend life.

Since its pilot launch in 2021, the PTA service has provided support to over 500 patients, with a remarkable 100% endorsement from those who have experienced the initiative. Furthermore, 95% of patients expressed their willingness to engage in discussions with their clinicians about the possibility of accessing clinical trials.

Patient Trial Advocate, Senior Research Nurse Vivienne Wilson, expressed her enthusiasm for the service, stating, “I’ve been working with Make 2nds Count for over two years now, and I think this service really is one of a kind.

“I enjoy the opportunity to talk to many secondary breast cancer patients, sharing my knowledge with regards to available trials and guiding them to explore their options.”

One such patient is Margaret Irvine, who was diagnosed 8 years ago with secondary (metastatic) breast cancer after an original diagnosis of primary breast cancer 9 years before that.

A person standing on a path Description automatically generated

Margaret – who is a trained District Nurse and has worked in the community throughout her career -says: “The worst part of being diagnosed was telling my close family – any negative changes are always hard to deal with.

“Finding information is never easy as most of it is very negative or outdated when beginning to research, but I tried my best and the unit I originally attended for treatment was very supportive. As my treatment progressed, I became aware of Make 2nds Count and I started talking to people about the PTA Service.

“Access to the service has given me new hope and support, as well as a new way of opening discussions with my treatment team and allowing myself and others as patients to have more control of the journey we are on. This is the main reason I decided to share my experience with others too.”

Secondary breast cancer, also known as metastatic, advanced, or stage IV breast cancer, claims the lives of 1000 women in the UK each month and is currently affecting 61,000 people, yet it remains a relatively unknown and underrepresented area of research.

The PTA service, which covers the UK with dedicated nurses based in Edinburgh, the Borders, and the Highlands, provides patients with personalised support and information. Patients undergo an initial one-to-one, hour-long phone consultation with specialist nurses who offer guidance on clinical trials, address queries, and assist in searching for suitable trials.

The ultimate goal is to empower patients to discuss clinical trials as a viable part of their treatment pathway.

Nina Barough CBE, Founder and Chief Executive of Walk the Walk adds: “We could not do any of the special work we do without everyone’s help, so sign up now at www.walkthewalk.org for The MoonWalk London on Saturday 18 May and join this incredible fun-filled ‘Fiesta’ of a night. 

“A night which brings people together all putting one foot in front of another to reach their own personal goal of walking a Half or Full Marathon through the night, whilst helping others. Come and see for yourself, it really is breath-taking!”

Make 2nds Count is dedicated to continuing its mission, ensuring that every patient with secondary breast cancer has the knowledge and opportunity to explore clinical trials as an integral part of their treatment journey.

If you are a secondary breast cancer patient who may be interested in clinical trials and the PTA service, please visit our website:

 – https://make2ndscount.co.uk/support/pta

Secondary breast cancer advocacy initiative goes nationwide

 Charity brings new hope to patients with incurable cancer 

A pioneering Scottish initiative to help secondary breast cancer patients is being rolled out UK-wide. 

The Patient Trials Advocate service (PTA) introduces people with the incurable disease to clinical trials which can help to improve outcomes and extend life. 

Since it began north of the border last year it has received a 100% approval rating and brought fresh hope to patients living with this largely unknown type of breast cancer which kills 1000 women in the UK each month. 

The initiative was developed by charity Make 2nds Count which campaigns to raise awareness of, and fund research into, secondary breast cancer – also known as metastatic, advanced or stage IV breast cancer – a form of the disease which has spread beyond the breast to other parts of the body. On average there are around 35,000 patients in the UK currently living with this form of cancer. 

But there is evidence that early access to innovative new treatment options can improve the outcomes of men and women with secondary breast cancer and the bespoke service sees specialist nurses support patients and link them up with clinical trials. 

The PTA scheme, which was the first of its kind in the UK, initially covered Scotland through nurses based in Edinburgh, the Borders and the Highlands. Now the team is extending the service across England, Wales and Northern Ireland. 

Patients have an initial one-to-one, hour-long phone consultation with one of the nurses who advises about clinical trials and answers any queries, searches for suitable trials and supports patients in discussing them with their clinician. 

“Many secondary breast cancer patients have never had a conversation with their clinician about clinical trials and we want to empower them to change that,” says PTA nurse Vivienne Wilson, a senior research nurse at Edinburgh’s Western General Hospital. 

“Sourcing the right information about available trials and understanding the association complex information can be very difficult. But we aim to make every patient with secondary breast cancer aware of them and give them the knowledge and the potential to participate in trials as part of their treatment pathway. 

“The Patient Trials Advocate service has been so well received that it’s a natural progression to make it available beyond Scotland and we’re delighted to be able to help people across the rest of the UK. This service really is one-of-a-kind and sharing our knowledge and guiding patients to help them explore their options is a real privilege.” 

Since the service piloted last year almost 150 patients have been supported and 100% backed the initiative, with 95% saying they would talk to their clinician about the possibility of accessing clinical trials. 

One of those who knows the value of a clinical trial is Edinburgh mum-of-four Lesley Stephen. Diagnosed with stage IV breast cancer out of the blue in 2014, the disease had already spread to her lungs, liver and bones.

Two years later she was told she had run out of treatment options.  But she subsequently got the chance to take part in a clinical trial and is still living with the disease more than six years later. 

Lesley says: “I had undergone 18 months of treatment, which was unsuccessful, when I heard of a friend who was taking part in a clinical trial. That inspired me and gave me hope that there just might be another option. 

“I researched potential trials myself, which was not easy, and I realised that there was a lack of awareness. But because of the trial I took part in, I have had another six years of life I never expected to have. This just shows why the patient advocacy service is so important. People need to know that there, perhaps, is another possibility out there for them.” 

To find out more about the Patient Trials Advocate service visit: 

https://www.make2ndscount.co.uk/funding-research/patient-trials-advocate/   

Edinburgh leads the way with breast cancer trials advocacy service

Bringing new hope to patients with the help of specialised nurses

Scotland is leading the way with an innovative service for secondary breast cancer patients. 

The Patient Trials Advocate service, (PTA) is the first of its kind in the UK, and it’s bringing fresh hope to those with the incurable cancer by introducing them to clinical trials which can help to improve outcomes and extend life. 

The initiative has been developed by charity Make 2nds Count which campaigns to raise awareness of, and fund research into, secondary breast cancer – a form of the disease which kills 1000 women in the UK each month but remains largely unknown. 

Also known as metastatic, advanced or stage IV breast cancer, it is a cancer that has spread beyond the breast to other parts of the body and can be treated but not cured.  On average there are around 35,000 patients in the UK currently living with this form of the disease. 

There is evidence that early access to innovative new treatment options can improve the outcomes of men and women with secondary breast cancer and the new, bespoke service, the first of its kind in the UK, sees specialist nurses support patients and link them up with clinical trials. 

The PTA scheme covers Scotland in its entirety through nurses based in Edinburgh, the Borders and the Highlands. Patients have an initial one-to-one, hour-long phone consultation with one of the nurses who can advise about clinical trials and answer any queries, search for suitable trials and support patients in discussing them with their clinician. 

“We know that many secondary breast cancer patients have never had a conversation with their clinician about clinical trials and we want to empower them to change that through our PTA service,” says PTA nurse Vivienne Wilson, a senior research nurse at Edinburgh’s Western General Hospital. 

“We want to ensure that every patient with secondary breast cancer has the knowledge and the opportunity to discuss trials as part of their treatment pathway.  

“I’m delighted that the Patient Trials Advocate service is now being expanded to include the whole of Scotland. I’ve been working with Make 2nds Count for over a year now and I think this service really is one of a kind. I enjoy the opportunity to talk to many secondary breast cancer patients, sharing my knowledge with regards to available trials and guiding them to explore their options.” 

Since the service piloted last year more than 100 patients have been supported. Of those, 100% backed the initiative and 95% said they would talk to their clinician about the possibility of accessing clinical trials. 

One of those who knows only too well the benefits of a clinical trial is Edinburgh mum-of-four Lesley Stephen. Diagnosed with stage IV breast cancer out of the blue in 2014, the disease had already spread to her lungs, liver and bones.

Two years later she was told she had run out of treatment options.  But she subsequently got the chance to take part in a clinical trial and is still living with the disease six years later. 

Lesley says: “I had undergone 18 months of treatment, which was unsuccessful, when I heard of a friend who was taking part in a clinical trial. That inspired me and gave me hope that there just might be another option. 

“I researched potential trials myself, which was not easy, and I realised that there was a lack of awareness. But because of the trial I took part in, I have had another six years of life I never expected to have. This just shows why the patient advocacy service is so important. People need to know that there perhaps, is another possibility out there for them.” 

Make 2nds Count was founded by mum Lisa Fleming, 38, of Edinburgh, who had no previous breast cancer diagnosis, warning signs or lump when she was told she had secondary breast cancer.

Her aim is to support patients and families, educate and raise funds for research into the disease. So far the charity has raised more than £1million.  

To find out more about the Patient Trials Advocate service visit: 

https://www.make2ndscount.co.uk/funding-research/patient-trials-advocate/