SRUK understands the vital role that a support network can play in a person's medical journey, whether that comprises of family members, friends or the medical team, and regardless of the diagnosis. It is apparent that one of the main priorities for individuals living with Raynaud's and scleroderma is to limit the feeling of seclusion that both conditions can sometimes bring, often due to the psychologically stressful experiences associated with hospital visits and the effects of Raynaud's and scleroderma on the body. A message conveyed by much of our community surrounds the desire to be able to speak to other people in similar situations, in order to understand how they manage their symptoms and the changes they have had to make to their day to day lives.
To facilitate this extension of support networks, SRUK has 8 support groups located in the UK – Newcastle and Northumberland, Exeter, South London, Bedfordshire, Merseyside, Norfolk, Portsmouth and South Wales. The leaders have lived with Raynaud's and/or scleroderma for several years, and so are well informed about what the primary concerns of others who are affected by the two conditions may be, chiefly through first-hand experience. As an organisation, SRUK are keen to understand how best we can provide further support and resources to support group leaders so that the sessions are even more worthwhile to current and potential attendees of the groups.
SRUK were recently approached by a team at the Lady Davis Institute of the Jewish General Hospital and at McGill University in Quebec, Canada. This team recognises the importance of these groups in providing support to people with chronic conditions, especially so for people affected by rare diseases who may not have access to a full breadth of professional support that caters to their specific needs and concerns. They have observed that many peer-led support groups focussing on rare diseases are not sustained and many patients will not have access to the groups. This is because if the condition is rare, there will be a relatively low number of support groups in a location, and often people with chronic conditions cannot drive or are unable to be on public transport for extended periods of time. Furthermore, support group leaders need a certain degree of resilience to be able to effectively lead their group and provide advice on a regular basis in this type of environment whilst supporting themselves, which without training can be difficult to achieve.
The team's position is that training and education for group leaders could appropriately address some of the barriers to initiating and supporting peer-led groups. However, there is insufficient evidence to enable understanding of how effective training programmes are, and so they identified that there is a need for well-designed and vigorous trials to examines the impact of such a scheme for group leaders of support groups, especially in the realm of rare diseases. Leading from this, the Scleroderma Patient-centred Intervention Network (SPIN), partnered with scleroderma patient organisations to develop the Scleroderma Support group Leader Education (SPIN-SSLED) Programme, including SRUK, Scleroderma Canada, the Scleroderma Foundation (USA), and the Scleroderma Association of New South Wales (Australia). Our support group leaders have been approached for this training and some will be taking part in the programme.
The programme itself is videoconference-based training and education with the goals of improving skills and self-efficacy, reducing burden, and improving emotional and physical function among group leaders. A Scleroderma Patient Advisory Team, comprised of current scleroderma peer support group leaders and representatives from scleroderma patient organisations, collaborated with scleroderma focussed researchers to develop the programme. 13 modules make up the programme and it will last 3 months, with a scheduled start in the spring of 2019.
SRUK are excited to see the training come to fruition and we hope that this a beneficial step in supporting the group leaders in embracing their roles and enabling support groups across the UK to thrive. We will share the experiences of the leaders at the end of the trial. This SPIN-SSLED trial will uncover more about the benefits of training and support groups for peer leaders, and the programme can be amended for other patient groups.
In the meantime, if you are interested in joining a support group, please visit here for information on our website, or alternatively email info@sruk.co.uk so we can see if there is one located near you.
We are always looking to extend the support group network, so if you are hoping to start one or if you already lead one that is not listed on our website, please email or call us on 0203 893 5998.
If you are interested in helping SRUK to fund work like this, then please visit our donations page here: https://www.sruk.co.uk/donate/. We rely on the generosity of our community to continue to support groundbreaking research in both scleroderma and Raynaud's.
If you would like information on management techniques for Raynaud's and scleroderma, please visit: https://www.sruk.co.uk/raynauds/managing-raynauds/ and https://www.sruk.co.uk/scleroderma/managing-scleroderma/
An inspiring story of how Sylvia, a member of SRUK's community, managed to keep running after her diagnosis: https://www.sruk.co.uk/about-us/news/sylvias-story-using-diet-and-exercise-thrive-scler/
