- registered charity 291657
Many consultants in Genito-Urinary Medicine recommend their patients to the Herpes Viruses Association (HVA). Around ten thousand copies of our 6000 word booklet HERPES SIMPLEX - A GUIDE are distributed through GU clinics every year. See price details.
Dr George Kinghorn, GU consultant in Sheffield said in his talk to members of the Herpes Viruses Association: "What I am suggesting to you is that to be infected with a herpes simplex virus is a state of normality. We tend to make this into a big deal instead of to say that to be infected with herpes virus is something that happens to all adults, some with symptoms and some of us without."
The HVA helps you to empower your patients by giving them the knowledge to help themselves. This can reduce stress and make frequent recurrences less likely to be a problem saving time for you and the patient, and reducing the demand for prescribed medication.
How we help you to help your patients
Doctors appreciate the time we can spend talking to patients on our helpline, explaining the virus and the impact it could have on the patient's life. We share experiences ranging from advice on how to discuss herpes simplex with a new partner to tips on life style changes to control the virus.
We can supply:
Free supplies can be sent to you: phone 0207 607 9661, write to HVA, 41 North Road, London N7 9DP or email email@example.com
1. TIME: Busy doctors are not in a position to encourage discussion. In a study of consultation of 30 patients with a history of simplex, the doctor initiated a discussion of simplex in only 6 cases, the patient initiated discussion in 11 cases and yet doctors felt that the daily lives of 76% of these patients were affected by simplex. Our volunteers offer as much time as the patient requires to talk them through their worries and help them understand their condition. The HVA helpline is available every weekday for 2 to 4 hour sessions, dealing with an average of 8.5 callers for an average of 13.5 minutes.
Our helpline volunteer reports: "I spoke to a lady from Leeds for 80 minutes. She was crying when she called me. By the time we said goodbye, she was able to joke."
2. PERSONAL EXPERIENCE: GPs will see only 2.4 cases per year and
may be surprised by the patient's adverse reaction to what is a self-limiting,
and in most cases, benign condition. We can explain how viral latency
and reactivation occur. We can supply self-help tips and other advice
about alleviating frequent recurrences through stress management, diet,
etc. and go through the list of trigger factors that may be precipitating
"Not only have my outbreaks practically ceased, but also I had far fewer colds last winter." Letter from a subscriber who is taking eleutherococcus senticosus.
3. FACTS: Healthcare professionals may have attempted to counsel the patient when s/he was newly diagnosed, shocked and unable to take everything in. Patients may need to ask the same question many times over before fully understanding the answer. They may consider some questions too trivial to "bother" the healthcare professional with.
Our helpline volunteer reports: "It took four repetitions, using slightly different words each time, before the caller grasped the message 'you will not reinfect the person from whom you contracted it.' She was worrying about how to prevent her boyfriend from contracting the infection."
4. EXPERIENCED COUNSELLING: Counselling and education are paramount in the management of those infected with HSV.  When a condition bears a stigma, patients appreciate talking to someone who has had a similar experience and who will therefore be non-judgemental. As a long-standing patient support group, our charity has experience of the whole range of questions, reactions and emotions that the word 'herpes' may evoke. Medical professionals sometimes choose unfortunate words to explain the nature of herpes simplex, e.g. the word 'incurable' is frequently thought by patients to mean 'fatal'.
"How long have I got to live?" is asked in letters to our office.
5. ANONYMITY: Herpes simplex is an especially stigmatised condition
and therefore the anonymity of telephone counselling is valued.
"I can't tell my GP I'm sleeping with another man as well as my husband, but I need to know from which one I could have caught it and how to protect the other." A sixty two year old caller to our helpline.
Why it is important that patients should be aware that we exist
Tell patients that:
Three quarters of the people with the virus do not have symptoms due a well-functioning immune system.
Around 7 out of 10 adults  carry herpes simplex virus type 1 or 2, and therefore have partial or total protection against contracting herpes simplex again.
Why do patients panic?
On top of the usual stigma, the 'herpes hype' means that the patients may have heard or read scare stories in the media. Worst case scenarios of people who are traumatised are portrayed as typical. This 'educates' patients into reacting negatively on diagnosis and compounds the stigma.
Why refer patients to our helpline?
Click here for PATIENT INFORMATION LEAFLET
Guidelines on drug treatments for doctors (taken, with permission, from the Clinical Effectiveness Guidelines of the British Association for Sexual Health and HIV)
Cases of primary infection may be mild so that symptomatic treatment is adequate: anaesthetic or soothing topical creams, antipyretic tablets, analgesic drugs.
Antiviral drugs started early on whilst lesions are still forming will shorten duration of pain and viral shedding.
There is no significant difference in the outcomes when using the different drugs, however cost may be relevant: a year's supply of aciclovir is £95.03, famciclovir (Famvir) £4,503.07 and valaciclovir (Valtrex) £419.94 [from DMG tariff BNF September 2005 - note that different prices may be negotiated by NHS hospital trusts0.
Primary Infection: antiviral tablets may be prescribed for 5 days. They may be continued if sores are still developing at the end of this period.
Recurrent infections are sometimes treated with five day regimen of antiviral pills, which are only clinically effective if started within 24 hours of first symptoms:
Suppression/prophylaxis may be given if the patient is troubled by frequent recurrences. The duration of therapy should be a process negotiated between the patient and the clinician; however, a treatment period of a year is recommended, with periodic reassessment. Aciclovir has been proven safe for up to 3 years.
Warn patients who are stopping prophylaxis that an outbreak 4 or 5 days afterwards is not an indication of future frequent recurrences.
For treatment of severe cases, the immunocompromised, primary outbreaks in pregnant women, etc. go to the guidelines of the British Association for Sexual Health and HIV (BASHH)
The HVA has anecdotal reports that some patients find lower doses are effective in preventing symptoms. For this reason, the HVA suggests prescribing aciclovir 200mg to allow the patient to experiment with lower doses. The patient should be advised that lower doses have not been trialled for prevention of transmission.
There is now a UK website authorised by the Health Commission to sell aciclovir to diagnosed patients: DrThom
Vegans and vegetarians may wish to know that aciclovir from Actavis (formerly Alphama) and Ranbaxy as well as GSK’s Valtrex (valaciclovir) are all suitable for vegans. However there is lactose in Novartis’ Famvir so whilst it is suitable for vegetarians, it is not a vegan product.
The HVA office has two staff to:
The 100 HVA volunteers:
* We are supported by the Department of Health
Subscribe to the patient support journal SPHERE to follow drugs trials, counselling ideas, patients views. Your subscription will also support the work of the HVA. You can download a subscription form here. If preferred you can email the information with credit/debit card details to us.
You will need to download a copy of Acrobat Reader (free) to read it.