Select Committee on Health Minutes of Evidence

Memorandum submitted by the Herpes Viruses Association (SH 155)

  1.  The Herpes Viruses Association (HVA)—a registered charity—is the only patient support organisation in the field of sexually transmitted illnesses (STIs) outside the HIV/AIDS field. Since 1981 we have worked towards reducing the stigma and improving the diagnosis and treatment of herpes simplex infection and, as a corollary, all STIs.

  Services/products include:

    —  Helpline service largely staffed by volunteers with herpes simplex.

    —  10,000 copies per year of "HERPES SIMPLEX— A GUIDE", our 6,000 word booklet written by people with herpes simplex, are distributed to newly diagnosed people.

    —  A quarterly journal for subscribers on medical matters, self-help tips, personal experiences, etc.

    —  Leaflets on every aspect of herpes simplex—"Pregnancy & Childbirth", "Transmission", etc.

    —  Awareness campaigns to counteract misleading media stories.

    —  Talks to GUM staff on "Counselling Patients with Herpes Simplex"; to medical and midwifery students on specific aspects of herpes simplex; to the public on "Cold sores, chickenpox and other herpes viruses"—a title chosen not to embarrass.

    —  Seminars, lectures, workshops, social meetings around the country, etc.

    —  A "local contact" scheme to share experiences.

    —  A "lonely hearts" list.

  The focus on this area raised by the "National Strategy for Sexual Health and HIV" is long overdue and we welcome the opportunity to contribute to the development of improved services. In the following recommendations, reference is made in brackets to relevant paragraphs in the Strategy.

  2.  Judgement and prejudice may prevent adequate service provision: statutory support is required for the provision of sexual health services (Family Planning and GUM clinics).

  STIs and family planning are intensely personal matters. They are subject to judgement and prejudice from both patients and health professionals.1 Current campaigns to raise awareness of chlamydia and other STIs will further increase patient numbers in GUM clinics.

  Professionals working in healthcare share the moral values of the wider population regarding sexual matters. This means that some may be guilty of judgmental and prejudiced attitudes towards people with STIs and this may affect the level of services offered. Managers and doctors of GU clinics will be aware of the pressure on the service (paragraph 5.2) but due to the confidential nature of these requirements (paragraph 2.4), GUM patients are unlikely to complain about inadequate services. A consequence of any reduction of provision in this field will be higher pregnancy/STI rates. A strong commitment from the Strategy can encourage those in charge of budgets and staffing to increase provision to meet demand. If queues get too long, patients give up, go untreated and spread STIs further.

    Quote: "The clinic is only open two afternoons a week so it was four weeks before I was able to get there."

  Recommendation 1:   It is essential that the Government is committed to increasing funding for GUM and FP services, as well as those re HIV, to enable clinics to cope with current demand and meet the increase in workload created by awareness campaigns.

  3.  GUM and FP services could be added to expanded primary care centres but not if this means closing separate services which allow for anonymity.

  Patients require discreet services for sexual health and family planning. A questionnaire to members of the HVA reveals that 51 per cent chose to visit a GUM clinic for diagnosis instead of their GP.2 The Strategy's suggestion that services could be provided at Primary Care level is inappropriate as many patients fear that they could be recognised when they attend the GUM clinic or FP session; or that the records from these services might be accessed by others in the health centre.3 This concern about anonymity could lead to under-utilisation of services and under-diagnosis of all STIs.

    Quote: "If I go to a GUM clinic will my GP have to know?"

  Recommendation 2:   It is essential that anonymous, walk-in access to GUM and FP services remains available.

  4.  Sexual health information must continue to be produced and publicised at a national level: through mass-media and in widely distributed leaflets.

  The Sexual Health Strategy will be unable to truly improve the health of the nation unless it includes a provision for education and information. Leaflets on sexual health and FP must be clear and user-friendly as people may be too shy to ask questions. PCTs lack both the resources and the expertise to develop and run effective sexual health promotion campaigns, and it would be hugely wasteful were they to endeavour to do so. The HVA believes strongly that it is for the Government to fund a national campaign, providing resources developed centrally with user consultation. These should be distributed freely in a variety of locations, not just in GUM clinics. Sexual health should be adequately dealt with in schools' sexual health classes. A clear message from the Dept of Health is required to ensure this (paragraph 3.5).

  The HVA welcomes the Strategy's commitment to implementing a sexual health awareness campaign. The numbers of cases of STIs continues to rise. This indicates that the "safer sex" message has not reached all those at risk (paragraphs 1.11 to 1.17). In particular young people must be targeted before their health is compromised.

  Awareness campaigns must not be allowed to lapse, each cohort needs the information at puberty to enable them to take control of their own sexual health.

    Quote: "We learnt about pregnancy and AIDS but not that there were other things you could get."

  Recommendation 3:   Paragraph 3.6 in the Strategy must include provision for repeated national "Sexual Health Awareness Campaigns" as each new cohort reaches sexual maturity.

  Recommendation 4:   The Strategy should recognise that where patient/user groups, such as the HVA exist, they should be closely involved in the preparation of information for patients/users.


    (a)  Stigma is a problem with local services as they are not anonymous.

  Sexual health is related directly to social integration and mental well-being. Helplines are of recognised value because people with intimate problems can be frank and explicit, they know the call is anonymous.

    Quote: "I drove to the GUM clinic in the next town because I was afraid I would see someone who knows me at my local clinic."

    (b)  GUM clinic waiting times have doubled in the last two years according to the PHLS.

  Increased work-load gives GUM staff less time to counsel patients. Herpes simplex can be physically complicated and psychologically upsetting4 and therefore these patients require longer.5 This is why a specialist charity emerged to deal with it.

  The Strategy recognises the need to work with voluntary organisations in the field of STIs and family planning (paragraphs 2.4, 3.27, 4.42). NHS Direct and other health professionals refer patients daily to the HVA, This underlines the value of the HVA's services.

    (c)  Expertise on particular conditions is best provided from patient groups dealing with these specific conditions. Such detailed knowledge cannot be provided by the broader, generalised services (eg NHS Direct).

  Expert patients are recognised in many fields of medicine, sharing self-help strategies and encouraging fellow-patients to take a proactive role in managing their condition. This applies where patient groups exist for STIs: herpes simplex and HIV.

  Recommendation 5:   The Strategy must continue to fund national, anonymous helplines.

  6.  Herpes simplex is more complicated than other STIs. It may be a chronic condition: like chickenpox "it is for life". Funding for the HVA must be long-term and include wider services ie self-care information and helplines.

  About 70 per cent of the UK population carries the herpes simplex virus although many of them are not aware of this as they do not have symptoms. There are approximately 18,000 new cases of genital herpes simplex diagnosed in UK GUM clinics each year, plus a further 14,000 visits annually by people with recurrences seeking repeat explanations and/or more treatment.6 About 74,000 visits are made to GPs for herpes simplex.7 A diagnosis often causes greater psychological misery than physical suffering4 and can transform a person's life: the HVA survey of new members found that 80 per cent felt "traumatised, depressed or suicidal" when diagnosed.

    Quote: "What's the point of going out at all—or even going to work? Can I really live with no sex life, ever?"

  The recurrent nature of herpes simplex, and the fact that it can lie dormant for years before causing symptoms makes it a very complex condition to explain. It is a condition that is often misrepresented in the media and even information from medical sources is sometimes misleading, eg the first PRODIGY guidelines which the HVA was asked to revise. Misunderstanding the word "incurable", some patients leave the clinic believing they are going to die. Herpes simplex is a chronic condition, unlike bacterial STIs which are treated on a "one off" basis.

    Quote: "The nurse explained herpes simplex but the leaflet she gave me seemed to contradict her—it left me even more confused. It was when I eventually tracked down the HVA and got it explained by their helpliner that it all started to make sense. Their leaflets are brilliant—they have the experience as patients to understand where I am coming from."

  "Herpes" is constantly stigmatized in the media. Facts now known to be incorrect were printed in the 1980s. These are still available in books and are therefore regularly regurgitated by the media. This repetition of scaremongering stories means that new patients need a great deal of support. Other STIs (apart from AIDs) can be eliminated by appropriate treatment, but herpes simplex virus remains in the body for the rest of the patient's life. Support for diagnosed patients with ongoing physical and/or psychological problems can only be provided by a dedicated patient support organisation such as the HVA.

    Quote: "I wish I had AIDS or cancer, because then I could tell people and they would feel sorry for me. I'm never going to have a chance of a sexual relationship because I can't risk anyone knowing."

  Specialist charities such as the HVA are a cost-effective way of getting maximum value. Currently the HVA receives £25,000 core funding from a Dept of Health, Section 64 grant, This is about one third of the annual budget, in contrast with the New Zealand Herpes Association which is fully government-funded. The HVA's grant has been decreasing each year for the last three years. These short-term grants make for uncertainty in planning for the future. In March the decision will be made re the next three years' Section 64 funding.

  The HVA helpline is run largely by volunteers at little cost to the taxpayer. It is used to its maximum with calls averaging 13.5 minutes each—some as long as one and a half hours. A modest increase in government funding support could provide salaried staff and more hours per day: the helpline would be open for longer hours and more people would get through the first time they call.

  People are members of the HVA for an average of two and a half years. Once their perception is changed so that a "cold sore" even on the genitals is not a disaster, they cease subscribing as they "do not want to be reminded of that era". This attitude, coupled with the fact that members are unable to fundraise publicly as this would compromise their anonymity, means the HVA is dependent on government funding to continue.

  Recommendation 6:   The Strategy plans for a 10-year initiative so funds should be allocated to the Herpes Viruses Association for this span. The HVA needs committed funding so that it can plan ahead with confidence and expand its helpline and specialised services at a low cost to the Government. It is every patient's right to have accurate information about herpes simplex and, if needed, emotional support to re-establish a healthy life.

  7.  The number of a sexual partners in a person's life continues to rise. People who act responsibly will have sexual health check-ups. There is a question in life insurance and mortgage protection policy proposal forms which penalises such people "Have you been tested or treated for a sexually transmitted disease?"

  Life insurance policies are void if it is later discovered that the proposer withheld a material fact likely to adversely affect the premium or cover. A question about sexual lifestyles was added to policy proposal forms when AIDS became a risk factor. The original form of words was ". . . tested or treated for HIV?" The HIV/AIDS lobby argued that this was discriminatory and succeeded in having the question broadened.

  Most STIs, if treated, have no impact on life expectancy and are irrelevant for the purpose of underwriting life insurance. The question is still trying to identify people with a risky lifestyle: the implication being that having sexual health check-ups identifies you as an individual at risk. However, monogamy is no long the norm so merely being tested for, or even acquiring, an STI is no longer a marker for a risky lifestyle. Patients who are aware that GUM records are confidential can avoid having to give an honest answer, rendering the question pointless anyway. In fact, even posing the question may discourage the patients from having check-ups for eg chlamydia. This will undermine the Strategy's aim to normalise sexual health check-ups.

  Asking an intrusive and irrelevant question about sexual health discriminates against conscientious individuals who take care of their health and does not assist the underwriting process. It is counterproductive and not in the interest of the patient, insurance companies or the NHS.

  Recommendation 7:   Through the Association of British Insurers, all insurance companies should be informed that the question must be changed to a form of words such as: "Have you been diagnosed with, or do you suspect you have, a condition that is likely to reduce your life expectancy or cause you serious health problems."


  The National Strategy for Sexual Health must make sure adequate ring-fenced funding is in place to provide:

    (a)  open access, confidential treatment for sexually transmitted illnesses and family planning;

    (b)  national requirement for sexual health education in schools;

    (c)  continuation of adequate funding for voluntary organisations which are expert in the field of sexual health and family planning, including the HVA; and

    (d)  The question re sexual health testing on insurance and mortgage

  protection proposal forms must be changed.

November 2002

  (1)  Greenhouse P. Destigmatising sexual health clinics. British J of Sexual Medicine 1996;25(3):13-15.

  (2)  Herpes Viruses Association. Where were members diagnosed? Survey results SPHERE 2002;16(4);15-19.

  (3)  West J, Judson F, Levitas R, Guy W. Young people and clinics: providing for sexual health in Avon. A report to Avon Health. Bristol Dept of Sociology, University of Bristol 1995.

  (4)  Bierman SM. Genital Herpes: a pervasive psychological disorder Arch Derm 1985;121:513-517.

  (5)  Herpes Viruses Association. A Welcome Epidemic: hype of the eighties—hoax of the century? SPHERE 1993;8(3):4-6.

  (6)  PHLS. Sexually transmitted infections in the UK: new episodes seen at genitourinary clinics 1995-2001.

  (7)  Woolley P, Chandiok S. Survey of the management of genital herpes in general practice. Int J of STD AIDS 1996;7(3);206-211.

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