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.
5. NATIONAL HELPLINES
ARE ESSENTIAL
BECAUSE:
(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."
SUMMARY
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
REFERENCES
(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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