What the Herpes Viruses Association does
Who writes this website
You can help us/volunteering
How the HVA got started
HVA Disclaimer and Information Standard policy
The Herpes Viruses Association, registered charity 291657, helps to improve life for people with herpes simplex by:
- helping them to understand the condition and put it into its proper perspective as a common skin complaint.
- providing leaflets on the most common herpes questions such as ‘How to protect my partner‘, ‘Talking to a new partner‘ and ‘Pregnancy and childbirth‘. Members can choose from 12 leaflets.
- publishing a quarterly journal SPHERE. This covers everything from research news to articles on stress management and our social events. See list of back articles.
- running trials to find out the usefulness of complementary treatments.
- publishing the results from our questionnaires about the experience of living with herpes simplex.
- supporting and encouraging local groups and meetings.
- training and supporting the volunteer helpliners.
Marian, our director, gives her personal account of having herpes – click on image:
On a wider front the Herpes Viruses Association is also concerned with:
- providing information and advice to those who have symptoms of herpes simplex, the public and the medical profession.
- encouraging a calmer, less hysterical approach to what is usually a minor skin condition.
- correcting misleading coverage of herpes simplex in the media.
- promoting a more accurate public awareness of the condition;
- working with other organisations to reduce the stigma surrounding all STIs and promote a more mature approach to sexual health.
- answer the helpline / advice line.
- organise local groups and social events – relaxed, informal get-togethers which have been attended by thousands of people over the years. Members who attend find them supportive, informative and enjoyable.
- members of the HVA comprise our Executive Management Committee.
We need more people for these roles. As well, we’d love volunteers to fundraise and to help in the London office with admin tasks. (Both of these can be part-time.) Get in touch: [email protected]
Who writes the Herpes Viruses Association’s website
Staff at the Herpes Viruses Association (HVA) write this website – see Who We Are below. They monitor worldwide research into treatments and vaccines, infection rates, and studies on the value of 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 received accreditation from the Information Standard. This is a ‘kite-mark’ system run by the NHS. Organisations which provide health information have to show that they have a carefully evaluated procedure. This ensures 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. You will see the Information Standard logo on various pages of this website.
The doctors of the “Special Interest Panel for Herpes Simplex Virus” of the British Association for Sexual Health and HIV support our work. We consult them on medical/clinical matters where necessary. The HVA is impartial and totally independent of all manufacturers of both drug treatments and complementary therapies.
We last updated this site on 18 September 2017.
We have formal procedures for complaints in place and can send you these if required.
Annual report 2017
Our office has two staff. Their payment follows the mean for London wages.
Marian Nicholson has appeared in magazines, on TV and has given radio interviews. She caught herpes simplex in 1981. Marian edits and co-writes the HVA’s quarterly journal, Sphere, and all information for patients. She trains and supports our volunteers.
Marian represents the charity on the Herpes Simplex Virus Advisory Panel – a sub-group of the British Association for Sexual Health and HIV. This panel writes the herpes simplex guidelines for doctors.
See her story on an NHS Choices video.
Marian gives talks to staff at sexual health clinics around the country. All clinics can request a training session that includes the PowerPoint presentation, “Helping you to help your patients with herpes”. Send us an email.
She has been a guest on many TV and radio shows, talking about her personal experience and explaining the creation of the stigma that accompanies ‘cold sores on the genitals’.
Nigel Scott is our Information Officer. He represents the HVA at meetings of the All Party Parliamentary Group on Sexual and Reproductive Health and the All Party Parliamentary Group on Skin. In addition, he works with other organisations that aim to improve sexual health services for patients.
Nigel gives advice on potential legal cases involving herpes simplex transmission and liaises with patients, lawyers and other sexual health organisations when these arise. So, every potential case that the HVA has been involved with, has never gone to trial.
Alongside Marian Nicholson, he has responsibility for creating and editing the HVA’s information resources online and on paper, including “Herpes Simplex – The Guide” as well as the charity’s quarterly journal. His article on the origins of the herpes stigma, written for Spiked online, has been widely cited across the internet.
He counsels members and callers to the helpline.
How you can help/volunteering
We need your help to continue to offer this helpful website. Help us with a donation. (We rely totally on donations/subscriptions.)
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 nine members: all members of our Association. None has a professional or commercial interest in herpes simplex (i.e. no doctors or pharmaceutical company representatives).
In 1981, people with herpes simplex got together to share information and to help each other as a response to the many scary stories about herpes simplex in the press. The Herpes Viruses Association became registered charity 291657 in 1985. We set up an office in the Omnibus Centre and we now employ two staff. About ten volunteers help us by hosting meetings, answering the helpline or assisting in the office. Over the years, we have dealt with over 100,000 enquiries from patients and health professionals.
In order that we can continue to offer our website (1,300,000 visitors a year), the long-standing helpline and information leaflets we rely on your donations and subscriptions.
If this website has helped you, then please subscribe or send us a donation by post (HVA, 41 North Rd, N7 9DP) or on line – just as you would to any cause that you thought does a good job. Thank you.
[email protected] can give you short answers to any questions you have; or phone our helpline on 0845 123 2305. (Not a premium rate call. It counts as a local rate from a landline. Of course, mobile services may charge more).
The Herpes Viruses Association website gives information about herpes viruses; in particular herpes simplex (genital herpes) and 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 Herpes Viruses Association 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.
Information Standard disclaimer: The HVA 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.
The blog page (www.herpes.org.uk/blog.html) contains user-generated information and is excluded from the scope of certification.