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.