What the Shingles Support Society does
Volunteers
Who writes this website
Annual Report 2019
Who we are
HVA Disclaimer and Information Standard policy
What we do
The Shingles Support Society (SSS) is a sub-group of the Herpes Viruses Association, registered charity 291657 and is recognised by the Charity Commission. The SSS helps to improve life for people with herpes viruses. The SSS:
- helps patients to understand the shingles and postherpetic neuralgia (PHN), how it develops and how you can catch chickenpox off someone with shingles;
- provides an information pack with leaflets on self-help as well as medical (prescribed) treatment;
- shares information on vaccines;
- invites patients to take part in questionnaires and surveys to help increase knowledge of the condition;
- trains and supports the volunteers who answer helpline calls.
On a wider front the Shingles Support Society is also concerned with:
- providing information and advice to employers, schools and colleges to enable people with shingles to continue normal life (if their state of health permits);
- promoting a more accurate public awareness of the condition, its treatment and vaccine(s);
Staff at the Herpes Viruses Association and Shingles Support Society (HVA & SSS) write this website – see ‘Who We Are’ – below. They monitor research into treatments and vaccines, infection rates, and studies on complementary therapies. Since 1985, they have been providing evidence-based information for a condition that has been, and continues to be, comprehensively misrepresented by most other sources.
In August 2011, the HVA & SSS received accreditation from the Information Standard – a ‘kite-mark’ system run by the NHS. Organisations which provide health information have to show that they have a carefully evaluated procedures and that they provide evidence-based and unbiased information. Also, the leaflet or web page must be pilot-tested on a group of readers to check that the language used can be easily understood. Finally, the finished leaflet or webpage must be validated by a suitably qualified doctor who is an expert in pain management. You will see the Information Standard logo on various pages of this website.
The HVA & SSS is independent and is not influenced by manufacturers of medical treatments and other therapies.
We last reviewed this site on 7 June 2024.
Feedback – you can send any comments, complaints or suggestions to us: by email or by post to HVA, 41 North Road, London N7 9DP.
We have formal procedures for complaints in place and can send you these if required.
Annual report and Accounts
You can read our latest Annual Review from our trustees and see the accounts to end March 2023.
Who we are
Our office has two staff. Their payment follows the mean for London wages.
Marian Nicholson, the director of the charity, has appeared in magazines, on TV and has given radio interviews. Marian edits and co-writes information for patients. She trains and supports our volunteers.
Marian is also a trustee of the umbrella charity Pain UK. This gathers together 45 pain-patient charities from BackCare to Vulval Pain Society to improve awareness of chronic pain. Pain UK is also a member of Pain Alliance Europe – which another umbrella organsation with over 35 members across Europe. You can see her talking about this. Both these umbrella organisations are dedicated to raising awareness of chronic pain and improving the lives of chronic pain sufferers through everyday improvements in the environment, at work and of course in medical treatment.