positive persons' manifesto 2015

POSITIVE

PERSONS’

MANIFESTO

2015

HEAR

OUR

VOICES

AND

ACT

A call for change from people

living with HIV in Scotland.

This Positive Persons' Manifesto brings together the voices of

people living with HIV who attended the Positive Persons'

Forum, highlighting their experiences and setting out actions

that must now be taken to bring about the change they need.

While this manifesto does not claim to represent the views of

all people living with HIV in Scotland, it does accurately

present the opinions and ideas expressed at the Positive

Persons' Forum. Attendance at this year's forum was diverse,

bringing together people of different genders, sexualities, and

backgrounds.

The following six areas emerged as priority issues of concern,

where challenges have been experienced and where change is

needed:

Introduction

Positive Persons’ Manifesto 2015

3

On 21 February 2015, the Positive Persons' Forum

brought together people living with HIV from across

Scotland to share their experiences, discuss

challenges and put forward ideas for improvements.

It is the only event in the UK that brings people

together for this purpose.

Education and Awareness

Involvement

Mental Health

Treatment, Care and Support

Disclosure

Living and Ageing Well

Many still see HIV as a death sentence, remembering images

of tombstones from the shock awareness campaigns of the

80s. There is little understanding among the public of

effective treatment, of treatment as prevention, and of the

difference between HIV and AIDS. We want people living with

HIV to be visible in a way that reflects our diversity. We want

the public to understand the reality of HIV today, and the life

experiences of people living with HIV, so that we can live in a

more supportive society with less fear, ignorance, and

stigma. Recent work in this area has not brought significant

change. A new approach is needed to bridge the gap between

public perceptions and reality.

Young people in Scotland have a right to education that

allows them to understand the reality of HIV. Guidance on

such education is available, but its application is inconsistent.

We want young people to grow up aware of their own risks

and able to take responsibility for their own health. Sexual

health education must be made consistent across Scotland,

with all young people being given reliable information about

HIV. This education should involve people living with HIV in

order that young people understand lived experiences of HIV.

The professionals, organisations, and services we come

into contact with throughout our lives must be educated

about HIV, and the realities of living with HIV. This would

ensure that we are treated respectfully within services, and

that services are delivered in a way that is appropriate to

our needs.

Education – of the general public, young people,

professionals and ourselves – shapes our

experience. It changes the way people view and treat

us, and impacts on how we view ourselves. It is the

most powerful tool we have to challenge stigma.

While we want to be able to participate in educating

others where we choose to do so, this should not be

seen as our responsibility.


4

Education and Awareness

We want to be educated about HIV, about our options for

treatment and care, about the services being provided for us,

and the policies that impact on our lives. We need this

education in order to be actively involved in our care, the

services we use, and the decisions that affect us. This

requires the availability of quality information, as well as

resources to allow us to learn from others.

“The biggest issue

is education in all

its forms”

“There's a

preconception that

you're going to die

because you have

HIV.”

“The more open

we can be with

young people, the

better. It's their

basic human right

– they need to

know about these

things.”

We want:

A new, effective, national public campaign

that features people who are living with HIV,

to bridge the gap between public knowledge

and reality

Sexual health education – including education

about HIV – for all young people in Scotland

HIV specific training for all professionals,

organisations, and services that we come into

contact with

Quality resources, made widely available, to

allow us to educate ourselves about HIV,

treatment, services, and policy


5

We are strengthened by opportunities to come together as a

community and support each other, share experiences, speak

openly about our lives, and form a voice for change. These

opportunities build our confidence and can give us a platform

to get more involved in the decisions that affect us. We want

resources to allow us to meet as a wider community of

people living with HIV. These must be sufficient to enable the

involvement of those living in rural areas, as well as those

with extra needs such as childcare.

Our voices must be heard in shaping the services we use, and

in determining the treatment we each receive. Our

involvement must be meaningful, and must be part of every

stage of service development and delivery. We must be

informed of the actions and decisions taken as a result of our

involvement.

We should be able to influence the policies that impact on our

lives, and to know that politicians and others in positions of

power listen to our voices. This involves our being informed

about, and able to develop relationships with, the

organisations and individuals who work to make our voices

heard.

Decisions that affect us should never be made without our

input. Whatever context decisions are being made within, our

views should be actively sought, listened to, and acted upon.

Involvement

Opportunities to be involved – as individuals and as a

community – allow us to play a part in determining

our own health, developing the services we use,

supporting each other, and influencing policy.


6

Further opportunities for people living with

HIV to come together to share experiences,

provide mutual support, and influence

change

Resources and funding invested in us so

we can build our capacity to be

meaningfully involved in all aspects of

policy and services

Meaningful involvement integrated into the

development and delivery of services

Our views to be actively sought and acted

upon, wherever decisions are being made

that affect us

We want:“Remove barriers

to our voices

being heard.”

“The barriers HIV

imposed on me

broke down once I

shared with other

people with HIV.”


7

It is essential that we can access mental health services that

are sensitive to our needs, where and when we need them.

Counselling should be available at the point of diagnosis, and

should continue to be available to us throughout our lives.

Access must be facilitated to further mental health services,

such as psychiatry, where needed, and the individuals

delivering those services must be educated around HIV.

Working to eliminate stigma about mental health issues and

services would also make accessing this kind of support

easier.

We want to be able to receive and offer quality peer support.

Being part of a strong peer support network allows us to

discuss our experiences with someone who has similar

experiences, and to learn from the ways that others have

maintained their own wellbeing. Access to peer support must

be available as soon as possible after a person is diagnosed,

and must be available regardless of where we live. For those

of us who would like to support other people living with HIV,

services should provide training and support to allow us to

become skilled peer supporters, able to provide a quality

service.

Any decision that affects us can affect our mental health. The

particular challenges to mental health that we face, and the

ways our mental health can be promoted, must be taken into

account when decisions are being made that affect us. Only in

this way can we be treated holistically, with our physical and

mental health being considered together.

Mental Health

Without good mental health, we are less able to

navigate the challenges that we face as people living

with HIV, less able to remain physically healthy, and

less able to enjoy our relationships with friends,

families, and loved ones. Poor mental health is both

a barrier to living well, and at times a result of the

challenges we face. Stigma, health problems, and

extra pressures on relationships, make it more

difficult to maintain good mental health.


8

Our mental health depends upon our ability to feel secure.

We must be able to look ahead and plan for our long-term

wellbeing. This means knowing that we will be able to enjoy

basic standards of life: that the services and treatments we

rely on will continue to receive funding; that we can access

welfare and benefits should we need them; and that we can

live free from hate crime. The stress and anxiety that comes

from lacking this basic level of security is unacceptable.

Universal access to mental health services

that are sensitive to our needs

Universal access to quality, trained peer

supporters and funding to develop and

grow peer support networks

The particular challenges to mental health

that we face as people living with HIV, and

ways that our wellbeing can be supported,

to be considered whenever decisions are

being made that affect us

Dependable access to welfare, benefits

and services

“I wasn't given

any option of

counselling.

When I did need

it, I didn't know

where to go.”

"Peer support is

a fundamental

safeguard to

good mental

health and must

be available

from diagnosis

onwards.”

We want:


9

The point of being diagnosed with HIV is pivotal in a person's

life: it shapes their health and wellbeing in the future, and can

put them on the road to living well with HIV. We believe that

the experience of diagnosis can be improved. Immediate

counselling and peer support must be available when

someone is first diagnosed. They must be given enough

information, in a way that they can understand, to know that

their HIV diagnosis is not a death sentence. This information

should be communicated in person, with care and respect, as

well as in leaflet form.

Throughout our lives, we must be informed about our

treatment options: including how treatments work and

potential side effects. We cannot make informed choices

without this information. We want to understand the real

reasons why certain treatments are or are not available,

including when this is because of cost. Chances to meet and

share experiences of different treatments are also important

to us – we want to be able to use our experience and

knowledge to educate each other.

To be meaningfully involved in our treatment, we must feel

empowered in discussions with consultants. We want to be

able to develop a trusting, regular relationship with one

consultant – with whom we can discuss options and whose

recommendations we feel able to challenge. While we want to

be supported and informed, the final decisions on treatment

must be our own. The decisions we make must be respected.

The treatment, care, and support we receive – right

from the point of diagnosis – has repercussions in

our lives. We want to be educated and equipped to

make decisions around our treatment, and to play

our part in managing our health.

Treatment, Careand Support


10

Remaining healthy while on treatment requires frequent

monitoring of side effects. We need opportunities to raise

difficulties with a course of treatment, and to explore other

treatment options. In this way, our care can continue to be

shaped around our needs and our physical and mental health.

“We need to be in

complete control of

any treatment that

we're given.”

“It's no wonder

people don't take

tablets when they

don't know why

they're taking

them.”

“So much of your

attitude depends on

how it's explained at

first.”

“We must be

involved with every

aspect of changes in

our care.”

We want:

Experiences of diagnosis to be improved by

providing immediate peer support,

counselling and more comprehensive

information at the point of diagnosis

Opportunities and resources to learn about

treatment options, including learning from

each other's experiences

A strong consistent relationship with one

consultant and GP

Final decisions on treatment to be our own,

and to be respected

Frequent monitoring of side effects and

opportunities to raise problems with

treatment


11

We recognise that there may be times when we must

disclose our status. We want to know when those times are.

Clear guidance should set out when we are legally required

to disclose, so that we can make informed choices.

Outside these times, disclosure must be recognised as a

personal choice. It is up to each of us to choose who we want

to tell about our HIV status. When we choose not to disclose,

others must respect our right to keep this information

private. An understanding should be created among the

public that they do not need to know someone's status, and

that a person has the right not to disclose it.

Greater understanding around HIV, and reduced stigma, will

also help to create an environment in which it is easier for us

to disclose our status to others. We want our society to be

one in which we feel more able to choose to talk to others

about HIV.

Given the fears that surround disclosure, we need

opportunities to talk to each other about disclosure and to

learn from each other's experiences. This can help us to

understand the potential impact of disclosure, build

confidence, and learn ways to explain HIV to others.

Achieving this requires training for peer educators and

facilitators who can lead conversations, and support people

living with HIV, around disclosure.

There are many barriers to disclosing our HIV status

to others, including fear of rejection and judgement.

Disclosure can lead to a loss of power as our

personal information enters the hands of others.

However, disclosure can also be a good experience:

the burden of keeping a secret can be lifted, we can

be brought closer to the people we care about and

who care about us, and can find ourselves better

supported.

Disclosure


12

We want:

Clear guidance on the legalities of

disclosure

The right not to disclose communicated

within a national campaign raising

awareness around HIV

Opportunities to discuss disclosure

as a community

“Telling people

I have HIV is

one of the

hardest things I

ever had to do.”

“Telling others

has to be your

choice.”


13

For this, we must be equipped to take control of our own

health – to understand and act on advice and information that

helps us to live healthy lives. We want easy access to our own

health records so that we can understand our own health and

treatment.

We want access to care, treatment and support to be

universal, so that we receive the same standards of care

wherever in Scotland we choose to live. This care should be

consistent and should provide for all elements of our health

and wellbeing, taking into account the other conditions that

we have alongside HIV, as well as our mental health.

As we look ahead, we want to understand what it will mean to

age with HIV. We want more research and information about

what it means to age with HIV, and what the long-term side

effects of our treatments might be.

Should we need to enter residential care in the future, we

want to be confident that HIV will be understood and that we

will receive the care we need. This should not be a stage of

our lives that we must fear: residential care homes, as well as

other services for older people, must be ready to provide us

with excellent, informed, and compassionate care. Local

authorities and social care providers need to think ahead

about how they will care for us as we age with HIV.

Each of us should be able to plan for our long-term

future, and to look ahead with confidence. We want

to do more than live day by day. We want to be able

to maintain our health and enjoy a good quality of

life, particularly as we get older. We want to live and

age well.

Living andAgeing Well


14

“I do not live

with HIV… HIV

lives with me.”

"Local authorities

should start

thinking about

the care we

will need in

the future.”

We want:

Easy access to our own health records

Universal access to consistent and

comprehensive care

Research instigated, information provided,

and supportive policies developed around

ageing with HIV, including the impact of

treatment on ageing

Care homes to be ready to provide

excellent care to people living

with HIV


15

Having read our manifesto, we urge you –

as service commissioners or providers;

statutory, clinical or third sector staff;

MSPs or other decision makers – to take

action. We do not want to ask for the same

things again in 2016. Over the course of

2015 we want to see, and to be involved in

creating, real change. Only by witnessing

this change will we be able to say that our

voices are being heard.


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