Countless numbers of people have got in touch with the Sarcoma UK Support Line since it opened three years ago. These people, whether by phone or by email, have asked for - and found - advice and support from the team of specialist sarcoma nurses. Having helped more than 1,300 people since February 2016, the team can report that the knowledge is not a one-way street. These callers are helping to shape not only the direction of the charity but influencing clinical practice across the UK.
Helen Stradling and Sam Hackett, both sarcoma specialist nurses, and Joshna Hirani, an occupational therapist (pictured), are the team behind the Sarcoma UK Support Line and have over 60 years’ experience between them. We spoke to Helen and Sam as the service enters its fourth year.
‘Sarcoma is not a common cancer – we know that’, says Helen. ‘If you find out that a family member or friend is diagnosed with sarcoma, you may have no idea what it is. You might Google ‘sarcoma’, but end up with lots of information not relevant to your friend or loved one.’ Sarcoma UK commissioned a Support Line to help patients and their families who had limited - if any - access to experts.
And it’s a confidential, supportive service for anyone who gets in touch. ‘People ring us back three times and on average we get to speak to people for about half an hour, but we speak to people for as long as they need on that day,’ says Sam.
The team know that every person is an individual and that there might not be a one-size-fits-all answer to most questions. ‘We can get straightforward one-off questions’, says Helen. ‘but more commonly we hear more than once from callers. We have some longstanding relationships with callers as they, or their loved ones progress through diagnosis and treatment. We also, sadly, have contact with people who have been bereaved by sarcoma. The time we offer listening to people really helps them. Not only are they able to talk through what has happened, but they can be sure that our team know exactly what they are/have been going through’.
Despite their extensive clinical experience, the team say that working on the Support Line has meant learning a new set of skills. ‘On the support line we don’t get to see our callers, or have their medical notes in front of us,’ says Sam, ‘so we have got better at really listening and helping to unpick what the caller is telling us. Many queries that come through are by email and sometimes we just get a one-line question with no other information’.
While the team have extensive knowledge about all things sarcoma, they know where to look if they need to pick some expert brains. ‘We are lucky,’ says Sam, ‘to have a large medical advisory board made up from many of the teams across the country, including doctors, nurses, pathologists, and radiologists. We can email or ring them for advice or confirmation.’
The enquiries that the team have received have been used to influence the work of the charity. ‘When we started, says Helen, ‘we didn’t appreciate that the Support Line would also feed into so many areas of the charity work. Since opening we have written different information factsheets and guides because we were hearing from callers it was needed’. The Information and Support team produced the rehabilitation booklet, lymphoedema z card and genomic factsheets directly as a result of needs identified from people contacting the Support Line. ‘We realised early on that people were finding it difficult to find useful and up to date information on clinical trials which led to our clinical trials hub’, adds Sam.
The impact of the Support Line has gone beyond the charity too, driving collaborative work with doctors and nurses from across the UK. Sometimes a question comes through that requires the team to look further afield for answers. Then they discover there are different and sometimes better practices going on in different parts of the country. ‘We want the best service for everyone regardless of where they live’, says Sam, ‘so we see where things could be better and we push for change’.
Helen and Sam have recently been joined by Joshna, an Occupational Therapist. ‘This is brilliant,’ says Sam, ‘because many of our calls are about rehabilitation and surgical issues. It’s great to be able to provide a different perspective and take advantage of Joshna’s wealth of experience’.
What’s next for the Support Line? ‘More of the same in one sense’, says Helen, ‘we want to continue providing a listening and informative ear to those in the sarcoma community, but we know that 5,800 people are diagnosed a year in the UK with sarcoma so there are more people we could provide support for. We are going to offer different opening times and different ways of getting hold of us’. The team also plan to reach out to the teenage and young adult population and hope to have more details shortly.
‘We want to increase our services and have plans in place to do so’, says Helen. ‘If you, a family member or a friend would like more information about sarcoma, give us a call or email, we are waiting to hear from you!’