About

What the Shingles Support Society does
Volunteers
Who writes this website
Annual Report 2017
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);
    • working with other organisations to improve promote awareness and improve the treatment of chronic pain.

Volunteers:

  • answer the helpline / advice line;
  • are members of the HVA and may serve our Executive Management Committee.

We need more people for these roles – as well as volunteers to fundraise and help part-time in the London office with admin tasks. Get in touch: [email protected]

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.

We last reviewed this site on 18th September 2017.

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.

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Annual report and Accounts

You can read our latest Annual Report from our trustees and see the accounts to end March 2017.

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 represents 30 pain-patient charities from BackCare to Spinal Injuries Association.  She represents the UK as a board member of Pain Alliance Europe which has 33 charities members from Norway to Romania…  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.

She has been a guest on many TV and radio shows.

Nigel Scott is our Information Officer. He represents the HVA at meetings of the All Party Parliamentary Group on Skin. In addition, he works with other organisations which are members of the British Association for of Dermatologists patient support network, that aim to improve the lives of patients with long-term problems.  that aim to improve sexual health services for patients.

Alongside Marian Nicholson, he has responsibility for creating information resources online and on paper.

He counsels members and callers to the helpline.

You can help us

We need your help to continue to offer this helpful website.  Help us with a donation. (We rely totally on donations/subscriptions.)

We need volunteers also – answering helpline calls, doing office tasks, working on fundraising or social media programmes, and much more…  Get in touch: [email protected]

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We rely on the people we help in order to keep going for others. If you have benefited from our services please donate on line or by post (SSS, 41 North Rd, N7 9DP). Thank you.

Contact us
Email [email protected] for short answers to questions; or phone our helpline on 0845 123 2305.  (This is not a premium rate line. Calls are charged at local rate from a landline.  Mobile services may charge more).

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We have seven patrons

Five of them are doctors who specialise in sexual health medicine:
Professor Michael W. Adler CBE MD FRCP FFCM
Dr David Barlow MA BM FRCP
Dr Brian A. Evans FRCP
Dr Colm O’Mahony MD FRCP BSc DIPVen.
Dr Raj Patel FRCP

Two of our patrons are ‘media doctors’ who help us get our message out to the public:
Dr Phil Hammond MB BChir MRCGP
Dr Miriam Stoppard MD FRCP

Executive Management Committee currently has eight members: all members of our Association.  None has a professional or commercial interest in herpes simplex (i.e. no doctors or pharmaceutical company representatives).

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SSS disclaimer and Information Standard policy

The Shingles Support Society website gives information about shingles (herpes zoster virus) and postherpetic neuralgia. It should not replace a consultation with a doctor.

This information relies on the evidence and medical opinion available at the time it was produced. We are 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.

Every effort has been made to ensure the information we provide is accurate. However, the Herpes Viruses Association and its sub-group the Shingles Support Society (HVA and SSS) 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 use of this information.

Information Standard disclaimer: The HVA and SSS shall hold responsibility for the accuracy of the information they publish.  Neither the Scheme Operator nor the Scheme Owner shall have any responsibility whatsoever for costs, losses or direct or indirect damages or costs arising from inaccuracy of information or omissions in information published on the website on behalf of the HVA and SSS.