Our Helpline and Support Services The SRUK Helpline Our free Helpline is available to enable anyone who is affected by these conditions to receive support. There are an estimated 10 million people in the UK who have Raynaud’s and around 19,000 with some form of Scleroderma and everyone has an individual experience of living with these conditions. The Helpline operates 365-days-a-year, from 9am-7pm. We currently have nine volunteers, who man the Helpline on a rotational basis: Amelia, Brigid, Kim, Liz, Jean, Katherine, Susie, Karen and Pam.
Helpline: 0800 311 2756
The aim of the Helpline is to empower and inform the caller in a supportive way. Our team update their skills regularly, and as an accredited member of the Helplines Partnership we will always conform to their standards of excellence. Although our volunteers are not medically qualified and cannot give medical advice or opinions, they have all been affected by Scleroderma and Raynaud’s and will listen positively and try to help with your particular enquiry. “Volunteering on the Helpline was about giving something back to the community that had been so supportive to me when I was first diagnosed with diffuse Scleroderma 15 years ago.” Amelia, Helpline volunteer When it comes to rare conditions such as Scleroderma, a particular challenge is finding reliable, highquality sources of information. This was one of the reasons that Susie decided to volunteer: “We can signpost people to reliable and accurate information and reassure them that help and treatments are available for Raynaud’s and Scleroderma, and that things can be done to help them manage and live with their condition. Knowledge is power and it’s great to share our knowledge with the people we help.” Brigid, another of our amazing volunteers, told us: “I have had Raynaud’s for about 30 years and was diagnosed with systemic sclerosis in 2013. I have been volunteering on the Helpline since Autumn 2018. For most, the opportunity to discuss their concerns with someone who knows what they are talking about is a relief. Those callers who do not have internet access say the Helpline is particularly important.” We are always keen to hear from people who understand Raynaud’s and/or Scleroderma, and who may be interested in volunteering on our Helpline.
Keep in Touch Support Service Our new Keep in Touch Support Service is a telephone-based service that is designed for anyone who is shielding or self-isolating. You can now receive a regular phone call to chat with one of our volunteers about absolutely anything, for as long as this situation goes on. Our volunteer will arrange to make the call at an agreed time on a regular basis: every week, fortnight or month. Calls generally last for around 25 minutes, and it is up to you to decide how often you would like to be contacted. If you or someone you care for wishes to use the service, please call our main number on 020 3893 5998 or email info@sruk.co.uk.
Local Support Groups Our local Support Groups are there for our community at a local level, by organising meetings or making connections via telephone or email. Please see p.22 for more information.
Our Online Community Help and support is also provided via our online forum hosted on Health Unlocked. This is a friendly space where you can exchange advice, information and support with others who are affected by Scleroderma and Raynaud’s, 24-hours-a-day, seven days a week. Many of our community members are living with these conditions themselves, although friends, family and partners are also very welcome. Please visit https://healthunlocked.com/sruk.
Social Media Join together and support each other through social media. Start a discussion, share tips and read advice from others on our Facebook and Twitter pages.
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