We all have a part to play in ensuring that decision
makers understand and uphold the human rights of
people living with HIV.
People living with HIV face a unique set of challenges that
go far beyond healthcare services. We must understand
and address these challenges if we are to create a fairer,
healthier Scotland for everyone.
This manifesto has been developed to present some of the
voices of people living with HIV in Scotland. It aims to
highlight the challenges people with HIV face and to present
suggestions on how they can be addressed.
It was produced by HIV Scotland on behalf of all those who
attended the Positive Persons' Forum held in Glasgow,
Scotland on 22 February 2014, and those who contributed
online. The forum is an event that brings together people
living with HIV in Scotland to express their views and
priorities for change.
About the Manifesto
Introduction
For more information about the
manifesto, living with HIV or how
you can get involved in future,
Contact:
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visit: www.hivscotland.com
The following pages set out challenges and recommendations
for change in key areas that can affect people living with HIV.
The issues, quotes, challenges and recommendations are
those identified and prioritised by people living with HIV in
Scotland who took part in the Positive Persons' Forum 2014.
The areas they identified as priorities for change were:
Disclosure
Employment
Ageing
Welfare
Healthcare and Patient Involvement
Policing and Crime
Education
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Priority Areas for Change in 2014
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HIV has gone from a health issue and moved to the wider welfare of the individual – quality of life, mental health, financial entitlements, benefits and housing.
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Disclosure
A person's HIV status is private. It is an individual's right to
decide if – and when – to tell someone (or 'disclose') that
they have HIV.
Some people feel existing laws that protect against
discrimination on the grounds of HIV status make it safer
and easier for them to decide whether to disclose or not.
Unfortunately this is not the case for everyone. Many people
feel pressured to disclose their status at work and are not
clear about who they are legally required to tell and when.
Some have also had their status disclosed by accident
through the sharing of medical information by services.
Many people fear the impact that disclosing their status will
have on their relationships with colleagues, friends and
family. They worry about being labelled or judged. This fear
is made worse by negative media coverage about HIV, which
does not accurately represent the experience of everyone.
The decision to disclose HIV status is an intensely private
one, and disclosure – whether accidental or intentional –
can have very serious consequences. Issues connected with
disclosure underpin many of the challenges people living
with HIV may face.
“Once you disclose you can't take it back.”
“This has the ripple effect. This impacts on everything else.”
“We are not totally sure what our legal rights are surrounding disclosure.”
“It's a personal choice, not a criminal offence.”
Quality information should be made available
about the legalities of disclosure in Scotland.
Public messaging and media representations of
HIV must be improved to help create a more
supportive environment for people wishing to
disclose their status.
Change needed:
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We all have the right to have our private and family life
respected. No-one should be forced to disclose their
HIV status.
Under the Equality Act 2010 an employer cannot unfairly
discriminate against someone living with HIV in the workplace.
People living with HIV are also under no obligation to disclose
their status to their employer, except in a small number of
specific healthcare professions. This is a good step forward
and many feel more protected in their place of work as a
result.
However, some people are still unclear about when they
should tell their employer and what will happen when they do.
Many believe that most employers are just as unsure, that
disclosure would result in stigma from colleagues and could
even put the individual's job at risk.
The practicalities of managing treatment for HIV and working
life are a huge concern, with many people struggling to
balance work and manage their treatment and medical
appointments.
Everyone has the right to work, to free choice of
employment, to just and favourable conditions of work
and to protection against unemployment. No-one should
“There are still very real concerns on how educated employers are about HIV and its effects, and how that influences recruitment choices.”
“The Equality Act has brought about more awareness of rights.”
“How do you manage all of the appointments?”
Employment
Change needed:Information must be made available to employers
and employees about HIV in the workplace.
Workplace equalities training should specifically
include information about HIV so that employers
are fully aware of their legal responsibilities.
Employment services should be developed for
people living with HIV and existing employment
services should be better resourced and promoted.
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feel at risk of victimisation in their workplace and it is
important that employers take steps to alleviate the concern
that many people feel.
More people are reaching later life with HIV, thanks to
advances in treatment. While this is a positive development,
many people feel keenly aware that little is known about
growing older with HIV. One concern is the lack of information
on the long-term effects of HIV medication, such as how long-
term use might impact on existing conditions or conditions
commonly associated with ageing, including cardiovascular
disease.
of their health and wellbeing. However some
people are concerned that it may become much more difficult
to look after themselves and their families as they grow older.
Many are unsure as to whether the health and social care
system currently in place for older people is properly equipped
to meet the needs of people ageing with HIV.
Being diagnosed with HIV prompted some people to start
taking better care
Social stigma and prejudice about HIV is certainly present and
perhaps even more prevalent among older people, and the
services they use.
We all have the right to freedom from discrimination
based on age or any other status in all aspects of life,
including health care and social services. Service providers
“There is a fear of the unknown: the virus is not fully mapped out and we don't know its mutations or long term effects.”
“What are the long term effects of the meds on my body function?”
“All the needs of the positive group are becoming more apparent as we all age.”
“What is the future for our positive children?”
Ageing
Change needed:Research should be undertaken to identify
whether services for older people in Scotland are
equipped to meet the needs of people ageing
with HIV.
Staff within care homes need to be given
consistent training in working with patients and
clients with HIV.
Public messaging and awareness raising
campaigns about HIV must be relevant to and
targeted at older people.
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must ensure that the needs of people ageing with HIV are
taken into account in the design and delivery of services.
Cuts to the welfare system are affecting the most vulnerable –
including some (but not all) people who have HIV. More and
more people are finding they can't afford basic essentials like
heating and food as they struggle with the effects of welfare
reform.
Many people living with HIV are frustrated by the current
system of assessments for work capability and believe that
they cannot accurately assess the impact HIV has on a
person's ability to work. Some also face particular difficulties
re-establishing benefits when ill-health forces them to move
in and out of work.
It is unclear whether HIV counts as a disability for the
purposes of access to disability-related benefits. Entitlement
to locally administered benefits can vary between different
areas, which can leave people unsure and create inequalities
in access.
Many people do not know where to go to receive information
and support on welfare issues.
supported when claiming welfare; people's health should not
be negatively impacted by a stressful system.
Information about claiming benefits must be
more readily available to people when and where
they need it.
Assessment staff should receive specialist
training about HIV including its symptoms and the
unpredictability of treatment side effects.
Benefits administered by local authorities (such
as support for transport costs and the Scottish
Welfare Fund) must be better regulated to ensure
consistency and equality of access.
“The system is “undignified” and “set up to make you not apply”.”
“It's difficult to re-establish benefitsif you are sick again after trying to go back to work.”
Welfare
Change needed:
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Everyone has the right to a standard of living adequate for
the health and wellbeing of themselves and their family, and
the right to security in the event of unemployment, sickness
or disability. It is important that people feel confident and
The most effective way to ensure the best outcomes for
people living with HIV is to involve them in all aspects and
decisions about their health and care. Services must focus
on the needs and views of those they reach.
Patient involvement, when done well, can help safeguard
people's rights and empower them to get the best possible
outcomes from their treatment. Some people living in or
around Edinburgh and Glasgow have had positive experiences
with services – feeling that staff listen to them and accurately
represent their views. The successful development of peer
support groups has also been greatly welcomed by many.
Problems arise when people feel that their needs are not
being addressed or that they are not being listened to.
Although there are examples of good practice around
Scotland, too many people still feel that their voices are not
being heard. Disclosure is also a key concern for many people
in contact with services; with so many different boards and
agencies working together some people do not trust that their
information will not be shared without their permission.
We all have the right to be involved in decisions about our
healthcare and the services we use, particularly the NHS.
“Patient involvement is vital. In Glasgow we have the peer support group and the patients' forum.”
“We're concerned that our information is being shared across health boards and agencies and what are our rights regarding disclosure?”
“I'm fed up with having to tell the same story to my GP all the time.”
Examples of good practice in relation to patient
involvement should be identified and used to
encourage different areas to learn from each other.
Junior doctors should be involved in a patient
forum so they gain understanding and experience
as they progress in their careers.
Guidelines and standards about patient
involvement should be clarified and developed.
All patients must have opportunities to be involved
in creating an integrated care pathway from the
time they are diagnosed.
Change needed:
Healthcare andPatient Involvement
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to be kept confidential, and to know how it is used.
We also have the right for all our personal health information
Policing and Crime
People living with HIV may experience different parts of the
criminal justice system. They may be reporting a crime, be
a victim of crime, have committed (or be suspected of
committing) a crime, or be called as a witness or serve on a
jury. As such, staff working within the criminal justice system
must have a good understanding of HIV. Everyone should be
treated with dignity and respect at all times by criminal
justice services.
Although some people have had positive experiences with
police and have felt protected and supported by them, others
have had less positive experiences and have not received a
helpful response. Many feel that the police and other workers
in the criminal justice system still lack basic education and
training – including general awareness about HIV and specific
information about disclosure, transmission and exposure. There is also a lack of clarity over the law on criminal
transmission of and exposure to HIV.
We all have the right to access justice. For that right to be
truly enjoyed, a number of other human rights must also be
protected, such as the right to information, the right to
physical safety, and the right to privacy. Scotland's criminal
“Are the police and prosecuting authorities aware of laws surrounding transmission and exposure?”
“We need a consensus on what the law should be.”
Police Scotland should ensure that all police staff
have access to quality information about HIV and
know how to respond appropriately to people
living with HIV. This should also cover issues such
as confidentiality and access to treatment within
police custody.
Reliable information should be made available to
people living with HIV and relevant staff within the
criminal justice system about the law surrounding
criminal transmission of and exposure to HIV.
Change needed:
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justice services must ensure that people living with HIV are
not disadvantaged within the criminal justice system.
Education
Many people with HIV still routinely encounter stigma and
discrimination in their day to day lives. This is often the result
of misinformation and misconceptions about HIV. Experiencing
this kind of treatment can be profoundly difficult on a personal
level and can impact on relationships with friends, partners,
family members and colleagues.
Improving public understanding is one of the key ways we can
create a more supportive environment for people living with
HIV in Scotland. Information about HIV must be made
accessible to all members of society and public awareness
raising campaigns should be given greater priority. Many
people have been disappointed by the lack of HIV related sex
education in Scottish schools.
People have also experienced stigma and discrimination
within health services. The training provided to student nurses
and other healthcare practitioners about HIV must improve to
help ensure that people living with HIV receive high quality
care, based on personal needs and preferences rather than
prejudiced assumptions about HIV.
We all have the right to education, and that specifically
includes the right to sexual health education. All children
“There are no government campaigns to raise awareness of HIV.”
“There's a lack of safe sex education for teenagers.”
Public awareness raising campaigns about HIV
must be given greater priority. People living with
HIV should have opportunities to be involved in the
design and development of awareness raising
initiatives.
Sex education in schools should be a statutory
requirement and should include information about
HIV. The Scottish Government should also ensure
that sex education is consistent across Scotland.
NHS Education for Scotland should ensure that
nurse and healthcare staff training includes more
information on HIV. All healthcare staff should also
have easy access to online training resources
about HIV.
Change needed:
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and young people in Scotland must be able to access quality
information about HIV and sexual health.
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This manifesto was produced by HIV Scotland on behalf of
people living with HIV in Scotland who attended the
Positive Persons’ Forum in 2014. HIV Scotland is the
national HIV policy charity for Scotland: we speak out for
people living with and at risk of HIV. We want a society
which is well-informed about HIV and devoid of HIV-related
stigma and discrimination. HIV Scotland provides:
Knowledge and expertise to help inform and deliver
strong policies and effective strategies;
Expert advice and a voice for HIV in Scotland;
Information, training and resources;
Signposting to evidence, expertise and community
experience; and
Opportunities to engage with others in shaping policy
and practice.
About HIV Scotland
OUR VISION is a society which is well informed about
HIV, devoid of HIV related stigma and discrimination,
and where everyone living with or affected by HIV
has access to and helps shape excellent services.
OUR MISSION is to ensure that all HIV relevant policy
and practice in Scotland is grounded in evidence and
in the experience of people living with and affected
by HIV.