Many consultants in Genitourinary Medicine recommend their patients to the Herpes Viruses Association (HVA). Around ten thousand copies of our 6,000 word booklet HERPES SIMPLEX – A GUIDE are distributed through GU clinics every year – see prices. You can order by email: [email protected] – or by phoning with your credit/debit card: 020 7607 9661.
We give talks to staff at sexual health clinics around the country. All clinics are invited to request a training session that includes the PowerPoint presentation “Helping you to help your patients with herpes”. Send us an email.
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.”
Supporting NHS services
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
Calming anxious patients
Patient Information Leaflet (PIL)
Guidelines on drug treatments for doctors
Which antivirals are suitable for vegans and vegetarians?
About the Herpes Viruses Association?
Subscription form for professionals
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:
- posters for noticeboards
- leaflets for display racks (reference ‘RR’)
- small cards to hand to patients with information about the HVA and its services
Free supplies can be sent to you: phone 0207 607 9661, write to HVA, 41 North Road, London N7 9DP or email [email protected]
1. TIME: Busy doctors are not in a position to encourage discussion. In a study of consultation of 30 patients with a history of herpes simplex, the doctor initiated a discussion of genital herpes 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 herpes 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. The HVA 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 the symptoms.
We do not limit our suggestions to antiviral therapy. We suggest symptomatic relief including topical anaesthetics or anti-inflammatory agents. The former include lidocaine (lignocaine gel 2% or ointment 5%, available from a pharmacy without prescription) which may also shorten recurrences or well-wrapped crushed ice in a plastic bag. Anti-inflammatory agents which can be suggested are salt water washes or cold used tea-bags. Some people wish to try herbal remedies, others only have faith in prescribed medications. We are particularly interested in sharing information about complementary or self-help treatments that our members have found helpful. We do not endorse any particular product.
“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.
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.
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
“Patients with genital herpes suffer considerable psychological morbidity and the fact that they are able to receive very sophisticated and experienced counselling and meet other patients with the same condition has been extremely useful in helping them to deal with their condition. The HVA has fulfilled this role admirably over the years…”
Professor M W Adler, CBE MD FRCP FFPHM, UCL Medical School, London, 1997
1. Cassidy LC, Holder MA, Barton SE, Meadows J, Catalan J. GU Medicine 1994;315
2. Cassuto J. Topical anaesthetics and herpes simplex. The Lancet 1989;8629:100-101
3. Woolley P. Suppressive therapy in genital herpes. B Journ Sexual Med. 1996;23:14-16
Tell patients that:
Herpes simplex is very common. It does not have any long-term health implications. Both types 1 and 2 may be the cause of cold sores, herpetic whitlows (on the fingers) and genital sores.
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?
To patients, a diagnosis can often cause greater psychological misery than physical suffering. All sexually transmitted conditions carry a stigma in this country, exacerbated by an immature national attitude to sex, characterised by prurience and prudery. The stigma associated with ‘herpes’ means that most people who contact us do not know anyone else with the condition.
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?
Since it has been suggested that psychological factors rather than clinical features determine the degree of discomfort experienced by people with herpes simplex, counselling by expert patients can help to reduce the psychological problems inherent in the condition.
4. Koutsky LA, Stevens CE, Homes KK et al. Underdiagnosis of genital herpes by current clinical and viral-isolation procedures. NEJM 1992;326:1533-39
5. Vyse AJ, Gay NJ, Slomka MJ, Gopal R, Gibbs T, Morgan-Capner P, et al. The burden of infection with HSV-1 and HSV-2 in England and Wales: implications for the changing epidemiology of genital herpes. Sex Transm Inf 2000;76:183-187.
6. Luby ED, Klinge V. Genital herpes: a pervasive psychological disorder. Arch Dermatol. 1985;121:513-517
7. Greenhouse P. Destigmatising sexual health clinics. B Journ Sexual Med. 1996;23(5):13-15
8. Rand RH, Hoon EF, Massey J, Jounson J. Daily stress and recurrences of genital herpes simplex. Arch Intern Med 1990;150:1889-93
9. Carney O, Ross E, Bunker C Ikkos G, Mindel A. A prospective study of the psychological impact on patients with a first episode of genital herpes. Genitourin Med 1994;70:40-45
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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 £69.48, famciclovir (Famvir) £4,602.41 and valaciclovir (Valtrex) £73.87 [Source of costing DMG tariff BNF September 2013-March 2014. (Different prices may be negotiated by NHS hospital trusts].
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.
Aciclovir 200 mg 5 times daily, OR
Famciclovir (Famvir) 250 mg 3 times daily, OR
Valaciclovir (Valtrex) 500 mg twice daily
Recurrent infections are sometimes treated with short course therapy. This is only clinically effective if started within 24 hours of first symptoms, so patients should have tablets/prescriptions in hand:
Aciclovir – 800mg three times daily for 2 days
Famciclovir – 1 gram bd for one day
Valaciclovir – 500 mg bd for 3 days
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 over 20 years. Monitoring is not required in previously well patients and only a dose adjustment in those with severe renal disease.
‘Bounce back outbreak’
Warn patients who are stopping prophylaxis that an outbreak 4 or 5 days afterwards is not an indication of future frequent recurrences.
Aciclovir – 200 mg 4 times daily for up to 12 months, OR
400 mg twice daily for up to 12 months, OR
Famciclovir (Famvir) – 250 mg twice daily, OR
Valaciclovir (Valtrex) – 250 mg twice daily (this dose is not available in UK), OR
500 mg daily
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. Therefore 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 are now UK-based websites such as MedExpress authorised by the Care Quality Commission to sell aciclovir to diagnosed patients.
Vegans and vegetarians
Patients may wish to know that aciclovir from Actavis (formerly Alphama), Ranbaxy, and also 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.
About the Herpes Viruses Association
- We are a registered charity 291657
- The HVA relies on subscription fees and donations. We deal with over 6,000 enquiries each year.
- Our patrons are five consultants in genitourinary medicine: Professor M W Adler CBE MD FRCP FFCM, Dr Raj Patel FRCP, Dr Colm O’Mahony MD FRCP BSc DIPVen, Dr David Barlow MA BM FRCP MFFP, Dr B A Evans FRCP, and two ‘media doctors’ with interest in sexual health: Dr Miriam Stoppard MD FRCP, Dr Phil Hammond MB BChir MRCGP MFFP
- The Herpes Viruses Association (HVA) was formed in 1981 by people with genital herpes simplex to research the subject and respond to enquiries from other patients, medical professionals and the media. The HVA became a registered charity in 1985.
The HVA office has two staff to:
- supply information to GU clinic specialists, doctors, nurses, midwives, health advisers, etc;
- react to misrepresentations of herpes simplex in the media and promote a more accurate public awareness of herpes simplex;
- publish SPHERE four times a year, covering everything from new research to advice on self-help and improving one’s attitude to simplex;
- organise seminars and workshops;
- administer subscriber/member requirements, sending information and advice, supporting local groups and contacts, and the many volunteers.
The 20 HVA volunteers:
- run our helpline;
- organise self-help groups and social events: relaxed informal get-togethers;
- staff our Executive Management Committee.
PROFESSIONAL SUBSCRIPTION FORM
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 to send in with a cheque.
You can email us for an invoice. And, if preferred, phone with a credit/debit card to 020 7607 9661, 10 am till late.