A pioneering Scots 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.
She 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/