The bespoke service, the first in the UK, offers patients with advanced breast cancer an hour-long initial consultation with specialist nurses, who then search for suitable trials.
Secondary breast cancer kills 1,000 women in the UK each month – but research shows early access to innovative treatments can improve the outcomes for patients.
East Lothian E. coli outbreak at nursery leads to 28 cases
Furious OAP claims patients being ‘discarded’ after dentist stops NHS treatment
Scottish GP patient survey 2022: The 5 worst rated doctor’s surgeries in West Lothian
Edinburgh dad with MND completes epic 265-mile Cairngorms cycle charity challenge
Scottish GP patient survey 2022: The 10 worst rated doctor’s surgeries in Edinburgh
The Patient Trials Advocate service (PTA) is being developed by charity Make 2nds Count, which funds research into secondary breast cancer.
The charity was founded by Lisa Fleming, who won the top accolade at the Edinburgh Local Hero Awards in 2019, after she decided something positive had to come out of her own caner diagnosis.
The 38-year-old had no previous breast cancer diagnosis, warning signs or lump when she was told she had secondary breast cancer in 2017.
By the time she was told she was suffering from the disease, known as the forgotten cancer, Lisa’s cancer had already spread to the majority of her bones and she was later told that it was also in her brain.
She has since undergone aggressive treatment including chemotherapy, radiotherapy and multiple surgeries.
But despite having been faced with mental and physical challenges, and experiencing extreme lows as a result of her diagnosis, Lisa has been determined to focus on the positives – a move which saw her found Make 2nds Count, to help fund research into secondary breast cancer and support those with the disease and their families.
The charity has now raised more than £1 million, and in January this year, Lisa told the Edinburgh Evening News: “Reaching our £1million fundraising milestone is just the most exciting start to what we predict will be another productive year for us,” she said.
“And while we look forward to achieving so much more, I’d like to say a huge thank you to everyone who has helped us reach that phenomenal million-pound total.
“Our supporters really do provide a lifeline and without them we would be unable to make the progress we have accomplished in raising awareness of this disease, in funding dedicated research and in facilitating projects like access to patient trials. Every contribution and donation are enormously appreciated.”
Speaking about the scheme, PTA nurse Vivienne Wilson, a senior research nurse at Edinburgh's Western General Hospital, said: “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.
“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.”
Also known as metastatic, advanced or stage IV breast cancer, the cancer spreads 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 secondary breast cancer.
Since the service piloted last year, more than 100 patients have been supported.
Of those, 100 per cent backed the initiative and 95 per cent said they would talk to their clinician about the possibility of accessing clinical trials.
Mum-of-four Lesley Stephen was diagnosed with stage IV breast cancer in 2014 and the disease had already spread to her lungs, liver and bones.
Lesley, from Edinburgh, said two years later she was told she had run out of treatment options.
But she got the chance to take part in a clinical trial and is still living with the disease six years later.
Lesley said: “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.”
For more information on Make 2nds Count visit: https://www.make2ndscount.co.uk/