About

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);

Volunteers

In the information pack, that you can buy, we list contact details for people who are happy to have others to get in contact with them for just sharing stories. It is well-known that talking about a problem will help you come to terms with it. It cannot get rid of the pain, but being heard, having your pain acknowledged by someone who understands, can be helpful. And perhaps the person you talk to will have ideas to share too? We need more volunteers on this list!

Would you send us your details to add to this list?

Who writes the Shingles Support Society’s website

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.

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 MBE, 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 organisation 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.

Shingles Support Society disclaimer

The Shingles Support Society website gives information about shingles/post herpetic neuralgia. It does not replace a consultation with a doctor.

This information relies on the evidence and medical opinion available at the time this information was produced. We can be confident that the views expressed and facts provided will assist patients, medical professionals and journalists in increasing understanding and improving the treatment of these conditions. Other authorities may differ in their detailed advice on certain points.

Every effort has been made to ensure the information we provide is accurate. However, the Shingles Support Society cannot be held responsible for the site’s accuracy or for any actions taken on the basis of the information provided on the site or for any loss suffered due to reliance on that information. We cannot guarantee uninterrupted access to this website or the sites to which it links. We accept no responsibility for any damages arising from the loss of use of this information.

We last reviewed this site on 7 June 2024.