An increasing number of complex calls to the Sarcoma UK office was the motivation behind the birth of the Support Line in 2016.
The pandemic brought the toughest demands yet in March 2020 as everyone pulled together to keep telephone lines, emails and text chats open in the face of a large increase in contacts.
Confusion, changing information and anxiety were all part of their work with patients, their families and friends, as treatments and trials were paused and access to GPs limited.
The service has continually adapted its approach, grown and evolved to meet the needs of the service user, many of whom are people with sarcoma. Its breadth of knowledge has expanded through additional team members with different experiences, such as occupational therapy expertise and, most recently, a midwife with a wealth of bereavement experience.
It’s been a privilege to be able to help so many people over the last five years. We will continue to improve the service and we look forward to helping more people in the future.’
It’s been a privilege to be able to help so many people over the last five years. We will continue to improve the service and we look forward to helping more people in the future.’
After the first three years, the team had helped more than 1,400 individuals and gained more staff while increasing its opening hours to Monday to Friday.
A new text service began in 2019 providing a different way to access the service – more anonymous and perhaps more accessible for younger contacts. In July 2019, hours were regulated to the same every day.
It’s quite a difference to when the team met 100 patients face-to-face as they went on tour as part of Sarcoma Awareness Week in 2016.
A large range of questions are covered by the small but dedicated team, ably supported by a Medical Advisory Group of clinicians.
Support, treatment, and diagnosis are consistently the three main reasons reported for contacting the Sarcoma UK Support Line which covers all type of sarcomas – soft tissue, bone and gastrointestinal stromal tumours. The team speaks to anyone in the sarcoma community, so that could be, for example, the person with sarcoma, or family, friends, GPs and hospital doctors.
The Support Line team reports that many people call because they have been told they might have sarcoma or get a letter to attend a sarcoma clinic, and they do not know sarcoma is a cancer.
Anxiety continues to be the highest disposition the team encounters, unsurprisingly in a completely unprecedented time which has affected everybody’s lives.
While demand doubled within days of the Covid-19 outbreak, the busiest month the team has seen so far was March 2021. Three times as many people in the last year reported worrying symptoms (2020 – 2021). However, the Support Line team has enabled 25% of people to talk to their families more about sarcoma.
‘The Support Line team feels that the Support Line is the beacon of what is happening in the real world for sarcoma patients,” says Helen Stradling, Support Line Manager.
“We have now spoken to more than 3,000 individuals over the five years and hear things before they get discussed as an issue nationally, which allows the charity to be at the forefront of making changes to ensure every person with sarcoma has access to the treatments they need and deserve.”
The Support Line team has collaborated with the Sarcoma UK policy team to take forward such issues as delays in surgery or access to treatments.
Cross-charity working has never been more important, demonstrated in swiftly collaborating with 22 other national cancer charities on producing advice during the pandemic.
While the true impact of the pandemic for sarcoma patients is yet to be realised, one thing is certain – the team is making a real difference.
