YOUR RIGHTS:
A GUIDE TO HUMAN RIGHTS AND HIV

yOur
righTSA GUIDE TO HUMAN RIGHTS AND HIV

Important note:This guide contains useful information but not legal
advice. If you are experiencing difficulties you canfind a list of organisations that offer direct support
to people living with HIV at the end of this guide.
We would strongly recommend that you seek
specialist advice about your particular situation if
you believe that your rights have been breached.

“My advice toother people livingwith HIV would
be to educate
yourself, and know
your rights.”
Person living with HIV

CONTENTS
Introduction ..................................................... 4
What are human rights?................................... 5
How are human rights protected in the UK? ... 6
Human Rights and		

Care and treatment.. ................................... 8		Private and family life.............................. 10

Challenging the decisions of public bodies... 12
Challenging discrimination............................ 14
What should I do if things go wrong?............ 17
Sources of information and support............... 23
Acknowledgements........................................ 26

YOUR
VOICE

YOUR
RIGHTSYOURCHOICE2 | your rights a guide to human rights and hiv

your rights a guide to human rights and hiv | 3

INTRODUCTION

w“Rights are not
the same asentitlements”
Person living with HIV

There are lots ofsituations whereknowing abouthuman rights can be
helpful, but if people
are going to exercise
their human rights,
they first need toknow what these are.
This guide explains
what your humanrights are, how they
are protected, andwhat you can do if
things go wrong.

WHAT ARE
HUMAN RIGHTS?
“The face of HIV
has always been
the face of our
failure to protect
human rights.”
Navi Pillay, former UN HighCommissioner for Human Rights

Human rights are the basic
rights and freedoms that weare all entitled to, regardlessof nationality and citizenship.

They belong to us all and cannot betaken away because every person
is equal and deserving of dignity.
Human rights are clearly definedand protected by British, European
and International laws. They protect
our freedom to control our day-today lives, and ensure that we canparticipate in all aspects of public
life in a fair and equal way. All humanrights are underpinned by the values
of:

ZZFairness
ZZRespect
ZZEquality
ZZDignity
ZZAutonomy
Although human rights cannot betaken away, there are some situations
where rights might be restricted: forexample, the right to liberty (freedom)
can be limited if someone commits acrime and has to be imprisoned.

4 | your rights a guide to human rights and hiv

your rights a guide to human rights and hiv | 5

HOW ARE
HUMAN RIGHTS
PROTECTED IN
THE UK?
In the UK, when we talk abouthuman rights, we are often
referring to the rights listed
in the British Human Rights
Act 1998. The Act lists rights
which belong to all people in
the UK, and outlines how theserights should be protected.
These rights are taken from theEuropean Convention on Human
Rights, which the UK has signed
up to.

The Human Rights
Act has two aims:
1. To enable us to access ourhuman rights here at home in
the UK through UK courts ortribunals, instead of only being
able to go to the European
Court of Human Rights.
2. To promote a ‘culture ofhuman rights’ by making surethat human rights underpin theworkings of government andpublic services.

The Human Rights Act means we all have:

ZZThe right to life
ZZThe right not to be tortured ortreated in an inhuman or degradingway

ZZThe right to be free from slavery orforced labour

ZZThe right to liberty
ZZThe right to a fair trial
ZZThe right not to be punished without
law

ZZThe right to respect for privateand family life, home andcorrespondence

ZZThe right to freedom of thought,
conscience and religion

6 | your rights a guide to human rights and hiv

ZZThe right to freedom of expression
ZZThe right to freedom of assembly
and association

ZZThe right to marry and found afamilyZZThe right not to be discriminatedagainst in relation to any of therights contained in the European
Convention on Human Rights

ZZThe right to peaceful enjoyment of
possessions

ZZThe right to education
ZZThe right to free elections

It does this by placing a legal
duty on public authorities(e.g. hospitals, schools, local
authorities and courts) to know,
respect and protect our humanrights in everything that theydo. This duty is important ineveryday situations because
it allows us to challenge poor
treatment and negotiate better
solutions (some examples
are given below). If you feelyour human rights have beenbreached, there are a rangeof things you can do without
ever having to take legal action(see page 17). The following
examples describe somesituations where you could
use human rights to challenge
unfair treatment.

your rights a guide to human rights and hiv | 7

care andtreatment

We all have the right not to be treatedin an inhuman or degrading way.
Public authorities have an obligation toprevent unfair treatment, and protect
vulnerable people. This means medical
staff must provide safe and effective
care, and treat people appropriately
at all times. If you encounter any of
the following situations, you could use
human rights to challenge them:• Refusal of life saving treatment e.g.
being refused access to your HIV
medication while detained by thepolice.

• Not being given sufficient

information to make informed
choices about treatment or being
given treatment without consent.

• Medical staff inappropriately sharing

personal information e.g. your HIV
status being disclosed without
consent to staff who are not involvedin your care.

• Use of excessive or unnecessary

medication, or forced medication
e.g. inappropriately being given
sedatives by care home staff.

• Blood samples being taken without
your permission.

• Poor conditions in health institutions
e.g. buildings in disrepair or
unsanitary surroundings.

• Assaults by staff and other patients,
or other abusive behaviour e.g.
being threatened because of yourHIV status.

“It’s your right to get the bestcare and for your information
to be kept confidential.”

Did youknow?

In Scotland, there is a Charter ofPatient Rights and Responsibilities
which sets out what you can expect
when you receive NHS care in
Scotland. It includes things like theright to be involved in decisions, theright for your personal information to
be kept confidential, the right to safeand effective care, and the right to betreated with dignity and respect.
In England, there is an NHS
constitution which has seven key
principles. The first of these statesthat the NHS has “… a duty to eachand every individual that it serves
and must respect their human rights.”
In Wales, the Health and Care
Standards set out what Welsh people
can expect when they access healthservices. Equality and human rights
are embedded within the standards,
and standard 6.2 specificallyaddresses protecting people’s rights.
In Northern Ireland, the Quality
Standards for Health and Social Carepublished in 2006 are underpinnedby nine values. One of these is the‘Promotion of Rights’ which statesthat “the individual and human rightsof service users are promoted andsafeguarded.”

Challenging
degrading treatment

Person living with HIV
8 | your rights a guide to human rights and hiv

caseyAfter Robert had a stroke, he
stud
was moved to a care homefrom hospital. The care home
staff were very concerned when
they found out he had HIV, eventhough there’s no risk of HIV
transmission from everyday care
activities. Care workers usedexcessive precautions whencaring for him, for example
wearing several pairs of gloves
when washing and lifting him. He
was always given the last bath ofthe day and other residents weretold not to visit him in his room as
he presented an ‘infection risk’.
Robert’s social worker recognisedthat this sort of treatment was
inhuman and degrading and may
be in breach of his human rights.
His social worker challenged thisand Robert was quickly moved
to a new care home where hereceived much better care.

your rights a guide to human rights and hiv | 9

respecting
private andfamily life

case
stud
y

Failing to respectpersonal choices

We have the right torespect for our privateand family life, homeand correspondence.
Private life covers things like privacy,
our individuality, relationships andparticipation in the community. People
must respect our personal choices. In
some circumstances, public authorities
may need to take steps to support
people to realise their right to a private
life, including their ability to participate
in society.

If you encounter any of the following
situations, you could use human rights
to challenge them.

• Not being allowed to see orcommunicate with your family while
in hospital or another care facility
e.g. family members being denied
hospital visits.

• Staff in care homes, supported

accommodation or hospital, etc.
controlling mail, phone calls, etc.
without authority e.g. being refusedaccess to a telephone or email.

• Not being allowed to view your

medical records e.g. not being
allowed to read your GP record or
blood test results.

• Your sexual relationship or right tomarry being restricted e.g. a samesex couple being denied the same
entitlements as a heterosexual
couple within a care setting.

10 | your rights a guide to human rights and hiv

Paul has been living wellwith HIV for many years but
as he’s got older he needs
support with some activities.
Sometimes a support worker
will take him out for the day
as he can’t get to the places
he used to go by himself
anymore. As a gay man, Paulwanted to visit a gay pub
where he used to meet old
friends. However, his support
worker is very uncomfortablewith this and refuses to takehim. Paul knows that the
support worker has taken
other people to pubs before
and is very upset. He feelsthat his right to respectfor his private life is being
breached and he is unable
to be himself. Paul decided
to get help and advice on
the matter because he wasunsure if this was a humanrights issue. He contacted
Citizens Advice who havesupported him to make aformal complaint.

your rights a guide to human rights and hiv | 11

challenging
the decisionsof public
bodies
The right to a fair trial
does not just apply tocriminal proceedings but
to a broad range of areas
where a person’s civilrights are decided upon.

This could include the complaints
procedures of public bodies,
compensation claims, or appeal
procedures in social security or mental
health tribunals. It should cover mostdisputes concerning welfare benefits.
The right to a fair hearing gives you
the right to participate fully with accessto all relevant information, for the
hearing to be held within a reasonable
period of time and to be allowed to be
represented. If you encounter any of
the following situations, you could use
human rights to challenge them.

• Not being given the opportunity topresent a case before a decision ismade.

• Not being told the reasons why aparticular decision has been made.

• A tribunal or hearing failing to act
independently and impartially.

12 | your rights a guide to human rights and hiv

Challenging a housing decision
Asha lived in social housing with her six-year-old son.
Without any warning, or consultation, her housing
provider placed another family within her home. Asha
was simply told that she would have to share. Asha
was deeply concerned that her home was too small
for two families and fearful of the implications should
her HIV status become known. There were no locks
on the doors and one day she came home to find her
medication spilled across the floor. The house wasovercrowded and her son’s school work began to suffer.
Asha felt her right to privacy and to her home had beenbreached, and she decided to challenge the decisionof the housing provider. She first complained directly
to the housing provider but they were dismissive andrefused to reconsider their decision. Asha did not feelthat the housing provider was handling her case fairly
and impartially, so she contacted her MSP. Her MSP
investigated the case and as a result the decision of the
housing provider was overturned.

your rights a guide to human rights and hiv | 13

case
study

challenging
discrimination

Discrimination occurs
when you are treatedless favourably thananother person in a similar
situation and this treatment
cannot be justified.

The Human Rights Act does notprotect you from discrimination in allareas of your life, but protects you fromdiscrimination in the enjoyment of therights in the European Convention on
Human Rights. This reflects the coreidea that all of us, no matter who weare, enjoy the same human rights andshould have equal access to them.
There are other laws in the UK that
protect you from discrimination moregenerally. If you encounter any of thefollowing situations, you could use
human rights to challenge them.

• Being denied access to medical

treatment, based on race, disability,
sex, sexuality, etc.

• Being treated unfairly within thecriminal justice system e.g. HIV
status being referenced in criminal
court cases when it is not relevantto the crime and leads to harsher
sentencing.

14 | your rights a guide to human rights and hiv

Did youknow?

The main anti-discrimination law inGreat Britain is the Equality Act 2010.
This makes it unlawful to discriminate against someone on
the grounds of age, disability, gender reassignment, race,
religion and belief, sex, sexual orientation, marriage andcivil partnership, and pregnancy and maternity. It prevents
unlawful discrimination in a wide range of situations, suchas access to employment, education, and private and public
services. Under the Equality Act, HIV is considered to be adisability from the point of diagnosis.
In Northern Ireland, the N.Ireland Act 1999 Sect 75 covers
all the equality and diversity issues, and the Disability
Discrimination Act, amended in 2007, makes specificreference to HIV.

your rights a guide to human rights and hiv | 15

The European
Convention
on HumanRights

WHAT IF THINGSGO WRONG?

case
study
The European Convention on
Human Rights plays an importantrole in the development andawareness of human rights in
Europe. This is a real-life exampleof how someone living with HIV
used the European Convention
on Human Rights to challenge abreach of confidentiality.

Using the European
Convention - Z v. Finland

A woman was involved in criminal
proceedings against her husband; bothwere HIV positive. During investigations
and in the court judgment, the woman’s
HIV status was made known to the public
via the press. The woman took a case to
the European Court, arguing that there
had been multiple violations of her rightto respect for private and family life. The
European Court held that two of her
submissions did breach this right, making
clear that only ‘an over-riding requirementin the public interest can justify breaching
medical confidentiality.’
The Court underlined the fundamental
importance of keeping medical data
confidential, stating that ‘respecting theconfidentiality of health data is a vital
principle in the legal systems of all thecontracting parties to the Convention. It
is crucial not only to respect the sense ofprivacy of a patient, but also to preserve hisor her confidence in the medical profession
and in health services in general’. The
applicant received financial compensation.

16 | your rights a guide to human rights and hiv“The knowledgeof where I canseek advice
when my rights
are violated is a
comfort cushion
for me to fallback on.”
Person living with HIV

If you feel that your human rights may
have been breached, this section canhelp you to assess the situation andyour possible options. It may be thatyou are able to resolve the problem
without taking legal action, and there
are a range of other steps to consider
first.
The below has been adapted frominformation from the British Instituteof Human Rights and the Equality and
Human Rights Commission.

1

Clarify the problem

The first thing to do if you believe yourhuman rights may have been breachedis to talk to someone else about the
problem. It may sound obvious, but it
is surprisingly common to feel scaredto speak up about a situation. You
could talk to a trusted friend, relative orcolleague, or someone who may be partof a support group or advice line. This
will help you to consider the issue asobjectively as possible. Remember that,
however distressing, your situation may
not be covered by human rights law.

your rights a guide to human rights and hiv | 17

“There are a lot of people out there
who don’t have the confidence to
speak and some folk don’t havethe language to communicate, sothey need to understand and knowthat there is support out there;that there are people who will
support them through whatevercrisis they are facing.”
Person living with HIV

18 | your rights a guide to human rights and hiv

2

Get expert help and advice

It’s a good idea to get some basic specialist advice about
your problem as early as possible to help you decide on thebest course of action. There are lots of organisations that canoffer you free advice on finding a legal adviser who can help
you. As a first step, you can contact the Equality and Advisory
Support Service or Equality Commission for Northern Ireland(see page 24 for details).
You can also consider calling a reputable lawyer directly if
you feel you have a potential claim. If you decide to hire alawyer, it’s a good idea to shop around first. Many advice
centres will recommend solicitors and this is often the best
method, but you can also seek recommendations fromfriends and family, or look online for specialist firms in yourarea. Make sure you are clear on the details of how you will
be charged before you hire anyone.
Local or national advice organisations, law centres orcitizens’ advice bureaux may also be able to help with the
problem themselves. Charitable organisations in your area
may deal specifically with human rights problems, and thismay include advice and help with making a claim. Your local
Citizens Advice Bureau will be able to tell you if you are
eligible for legal aid and signpost you to a suitable lawyer(see page 25 for details).

your rights a guide to human rights and hiv | 19

3

Resolve the issue informally

Sometimes it’s possible to resolvea problem quickly by talking to thepeople involved, without going
through any formal procedures. It’s
always a good idea to seek advice
before raising an issue directly with thepeople involved.
If you feel able to, raise the problem
with the person, organisation or publicauthority that you feel has breached
your human rights, either by speaking
to them or writing a letter. You should
explain the issue and say that you feel
you have a complaint on human rights
grounds, and ask for a response to
your complaint. If you don’t think you
are able to speak to them yourself, you
could find an advocate to support andhelp you get your views across.
Sometimes pointing out the humanrights implications of a situation may
not change things. The person ororganisation concerned may disagree
that there is a problem or refuse tolisten to you. Or you may decide thatthe situation is best approached moreformally.

4Complain within an organisation

If your complaint relates to anorganisation such as your employer ora service provider and the organisation
has a formal internal complaints
system, you should use that as afirst step. If not, you could make acomplaint to the relevant person and/or that person’s superior. It’s a goodidea to keep a written record of what
has happened to you and when, as
well as who you’ve spoken to, what
action you’ve taken and any response
you receive. If you need help inthinking about or making a complaint,
you could contact a local or specialist
advocacy organisation.
If your complaint relates to a publicauthority, it may be better to use theorganisation’s formal complaints
procedure before taking legal action(but remember the time limit for
legal action may run out before thecomplaints process has finished). All
public authority service providers musthave a complaints procedure settingout how people who use their services,or those acting on their behalf, canmake a formal complaint.

20 | your rights a guide to human rights and hiv

5Complain to an external personor organisation

If you think your human rights havebeen breached and you have been
unable to resolve the problem with theperson or organisation involved, you
may wish to consider complaining to
an external person or organisation.
You can make a complaint to yourlocal councillor or your MP/MSP/AM/
MLA. Depending on the nature of yourproblem, there may be a person ororganisation dedicated to providing
help with particular issues, such as theChildren’s Commissioners. You may
also be able to make a complaint to
the relevant regulator for potential
investigation.

important note
In all cases, there are time limits
which mean that you may need totake legal action quite quickly so as
not to lose your rights. Time limits
can be complicated but in somecases you may have to bring a claim
to court within three months.

Depending on the type of problem
you have, you could take your story to
the local, regional or national media– or engage in some other form of
campaigning. Make sure you thinkvery carefully before you do this as
sometimes it can do more harm than
good.

your rights a guide to human rights and hiv | 21

WHERECAN I
FIND OUT
MORE?

22 | your rights a guide to human rights and hiv

Informationand support

your rights a guide to human rights and hiv | 23

Equality and Human Rights
Commission (EHRC)

Equality Commission for
Northern Ireland (ECNI)

Protects people against discriminatory
treatment and holds organisations,such as businesses and Government,to account for what they do.
www.equalityhumanrights.com

Provides protection against
discrimination on the grounds of age,disability, race, religion and politicalopinion, sex and sexual orientation.
www.equalityni.org

In Scotland:

Y 028 90 500 600
E information@equalityni.org

Y 0141 228 5910
E scotland@equalityhumanrights.com

Equality and Advisory andSupport Services (EASS)Advice and support about
discrimination and human rights.
www.equalityadvisoryservice.com/
Y 0808 800 0082

Citizens Advice
Provides free, confidential andimpartial advice on a range of issues
including money, benefit, housing andemployment problems.
www.citizensadvice.org.uk
England call 03444 111 444
Wales call 03444 77 20 20

Citizens Advice Scotland
Scottish Human
Rights Commission
Promotes and protects human rights
for everyone in Scotland. They are an
independent public body, accountable
to the people of Scotland through the
Scottish Parliament.
www.scottishhumanrights.com
Y 0131 244 3550
E hello@scottishhumanrights.com

www.cas.org.uk/
Y 0808 800 9060

Acas
Help and advice for employers andemployees.
www.acas.org.uk
Y 0300 123 1100

The Scottish Human Rights
Commission have created a guide‘Help with Human Rights’ which you
may find helpful:www.scottishhumanrights.com/
humanrights/helpandadvice
24 | your rights a guide to human rights and hiv

your rights a guide to human rights and hiv | 25

ACKNOWLEDGMENTS

This resource has been co-published by HIV Scotland
and the National AIDS Trust after months of research.
We could not have done this without a huge amountof consultation and we would like to thank the many
experts who contributed to the production of thisresource.
Most importantly we would like to thank community
members who not only shared their stories with us,
but also set the direction of the guide and provided
feedback at every stage.
We would particularly like to thank:
The British Institute of Human Rights
The Equality and Human Rights Commission
The Scottish Human Rights Commission

26 | your rights a guide to human rights and hiv

Scottish charity (No. SCO 33951) Registered company (No. 242242)

National AIDS Trust
New City Cloisters,
196 Old Street,
London EC1V 9FR
www.nat.org.uk
National AIDS Trust is a Registered Charity No. 297977 and a Company Limited
by Guarantee No. 2175938, (registered in England and Wales)

Registered Office: New City Cloisters, 196 Old Street, London EC1V 9FR

Design & Illustration: Heedi Design

HIV Scotland
18 York Place
Edinburgh
EH1 3EP
www.hivscotland.com