Positive Action
As NHS reforms put the future of hepatitis C services in the UK in question, Phil Spalding tells Kayleigh Hutchins how the Hep C Positive project has raised awareness about the virus in Swindon.
With almost half of NHS commissioners having no measures in place to increase hepatitis C treatment in the UK, according to a recent Hepatitis C Trust report (DDN, April, page 5), the importance of disseminating accurate information about the virus and how to access treatment seems more crucial than ever. As a former service user and hepatitis C sufferer himself, Phil Spalding set up the Hep C Positive support group to offer others affected by the virus much-needed support and advice on how to test for and cope with the disease. From starting out as bi-monthly meetings, they grew into weekly sessions as it became apparent that more support and information was needed, not only for sufferers, but also carers and the wider community. Spalding was made hep C coordinator by Swindon’s community safety commissioner, and given the opportunity to develop the project further.
This gave Spalding the chance to reach out to existing health and social care services – in particular drug and alcohol services – to encourage referrals. He found that a lack of accessible information and general education about the virus had brought about massive stigmatisation around hepatitis C, similar to the public opinion of HIV in the eighties. It became obvious to him that there was an underlying idea that hepatitis C ‘only happened to bad people’ or people who ‘weren’t worth it’, and that ‘all hep C sufferers were drug addicts and criminals’. To maintain the success of the project, Spalding worked to dispel the negative connotations and get people into treatment.
‘Most “addicts” don’t like the label society gives them and it’s one of the reasons they may not like to talk about hep C. It’s just another negative label,’ he says, and so it became crucial to his role to raise awareness and distribute the correct information to clients, their families and the community. The aim was to make it easier for those who needed it to find a pathway to testing, treatment and support.
To do this, Spalding sought to publicise both the virus and the project, reaching out to professional organisations like the Hepatitis C Trust and DHI, as well as the local DAAT and drug services, and getting coverage from the BBC and press agencies. He also organised an educational evening in partnership with Swindon Borough Council, giving health professionals and patients a chance to interact and learn more about the disease.
As the work done by the project depended heavily on the workers within health services making referrals, Spalding aimed to demonstrate how the Hep C Positive project could help their clients, giving them a safe place to talk to others who understood the problems they were facing. ‘It’s about giving people choices and opening as many doors as we can, enabling service users and patients to, hopefully, find something that will motivate them into taking responsibility and moving forward with their lives.’
Spalding approached each new client as both peer and counsellor, discussing their feelings and encouraging them to go to the support group to open up to others who are living with hepatitis C. ‘Some people are uncomfortable with this idea at first because they are usually frightened and ashamed,’ he says. But once they realised they were among peers and could relax in a friendly and non-judgemental atmosphere, they were able to open up, giving Spalding the chance to signpost other services that the client might need.
‘My role involves a lot of advocacy and what I call “hand holding”,’ he says, which included helping clients to schedule and keep appointments at GP surgeries and hospitals. Having gone through treatment for hepatitis C himself, Spalding was able to explain complicated medical terms and inform clients and their families about the treatment process in a way that was not too overwhelming, and easier for them to come to terms with.
The Hep C Positive project has now helped many people from different backgrounds develop the courage to get tested, and follow through to treatment for the virus. It boasts a number of success stories to show how effective the project has been, and the group is eager to share its members’ journeys to support others around the country who may be experiencing hepatitis C.
In Grant’s case, the group meetings were a way of combating his isolation from society, says Spalding. ‘When I first met Grant he was extremely nervous and appeared to be hiding behind his scarf with just his eyes showing beneath the brow of his woolly hat. He was a long-term drug user who, apparently, had no real social life except his round of health and social care appointments and a weekly card game in a pub.’ Grant was able to connect with Spalding as a fellow drug user, and began his journey by asking him a number of direct questions about the disease.
From being reluctant to join the group at first, he has connected with the others, and is now confident enough to speak in front of them. After following his course of treatment for hepatitis C, he is now clear of the virus, but he still attends the group to offer support to those going through the same journey.
Hannah was another client whose involvement with the Hep C Positive project helped her seek treatment. Diagnosed HIV positive at the age of 23, she felt that she had no one she could talk to apart from her drugs worker, who had referred her on to the group. At first she just sat in the circle and cried, finding it difficult to explain how she was feeling or the pain she was in, but in time she began to open up to others in the group and find the help she needed.
‘Whilst she hasn’t been ready to confront some of her emotional issues and most probably doesn’t fully understand them, our feelings are that as long as she’s coming to us every Monday evening, it gives her a haven at least once a week and keeps her safe for that time,’ says Spalding. ‘Whilst we have opened the door for her, she’s the one that’s had to walk through it.’ Like Grant, she also sought treatment and is working on her issues with the group’s help.
The future of the Hep C Positive project is bright, but Spalding is keen to spread the work in Swindon further afield, and has been asked to look into starting similar projects in other regions. ‘The most consistent effort has to be put into awareness and information,’ he says. ‘I’d like to see more referrals from people and areas that have yet to access the project, encourage more people to come our group and continue raising awareness wherever and whenever that may be.’ DDN