MY CARE MY VOICE

A GUIDE FOR PEOPLE LIVING WITH HIV IN ENGLAND

Here you will find our guides for people living with HIV, with information your rights and what you should expect from your health and support services. There is also advice on how to get the most from your HIV services, and how to shape the way services are provided for yourself and others living with HIV.

KEY

A right you have as a user of a service
An expectation you should have as a user of a service,
based on best practice and professional standards
This is advice on how to get the most out of your services

My HIV Clinic

my gp

other doctors i see

my medication

mental and emotional health

sexual and reproductive health

dentists

Dentists often ask new patients whether they have HIV. You don’t need to respond to this question if you don’t want to. However, there are benefits to telling your dentist. People with HIV are more likely to have particular dental problems, particularly at low CD4 counts. Your dentist may also prescribe medication such as sedatives (for people with dental phobia) which could interact badly with your HIV medication. ICON-A


If you do tell your dentist your HIV status, they must keep this confidential.1 ICON-R


[1] Handbook to NHS Constitution, March 2013. http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx


social support

Depending on your needs, you may be able to access social care services or other forms or social support.

Social care is about helping people live independent, healthy and fulfilling lives. As with health care, social care services are as varied as the needs of the people accessing them. 

Social care may include:

  • Help with doing things in your home (cleaning, preparing food)
  • Support with daily life (eating, bathing, dressing)
  • Equipment and adaptations to help you be independent in your home
  • Residential care or supported living
  • Support from a social worker

Not everyone living with HIV will have support needs which are serious enough to need social care.  But social support can be important to staying well with HIV. ICON-A

Some services provided by local HIV organisations are ‘open access’ or ‘universal’ services, which means that anyone with HIV can approach the organisation directly and ask to use them. The organisation may be funded to provide services to anyone living with HIV in your local area.

The sort of support these services provide may include:

  • Support with coming to terms with an HIV diagnosis and disclosing this to family and friends
  • Information and advice to help with problems with housing, welfare benefits, financial issues, immigration and accessing NHS services
  • Advice on dealing with discrimination and stigma
  • Peer support groups, where people living with HIV can meet together to listen to and support each other

Not all people living with HIV will need or be able to get all of these types of help.  It will depend on your needs and how much HIV is affecting your ability to manage daily life. 

This is not an exhaustive list and depending on your needs there might be other ways social care can help you and your family.

To find out about HIV support services in your area, search the NAM e-atlas: http://www.aidsmap.com/e-atlas

confidentiality and disclosure

You have the right to privacy and confidentiality and to expect the NHS to keep your personal information safe and secure.1  ICON-R

You also have a right to see what information is recorded about you on your patient records and what parts of your record are shared with other healthcare professionals.1 ICON-R

[1] NHS Constitution http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx 


DISCRIMINATION AND COMPLAINTS

You have a right not to be unlawfully discriminated against in accessing any healthcare or social care services. Discrimination is unlawful on the basis of gender, race, religion or belief, sexual orientation, disability or age.1 ICON-R

HIV is legally defined as a disability from the moment you are diagnosed.  You do not have to think of yourself as disabled to be protected by this law (the Equality Act 2010). From the point of view of the law, you have a disability and so any HIV discrimination against you is unlawful.1 ICON-R


Discrimination in healthcare might involve:

  • a doctor, nurse or dentist refusing to treat you because you have HIV
  • having to wait longer to be treated because you have HIV (for example, being told you must take the last appointment of the day)
  • or any situation where you get worse treatment than other patients because of your HIV.


Discrimination in social care might involve:

  • refusal to provide a service because you have HIV
  • a poorer quality service because you have HIV (e.g. taking unnecessary additional precautions against HIV transmission when providing personal care services).


You are also legally protected against harassment. This is behaviour by healthcare or social care staff which violates your dignity or creates an intimidating, hostile, degrading, humiliating or offensive environment.1 ICON-R


The Equality Act also protects you from further discrimination if you choose to make a complaint (this is an example of ‘victimisation’).1 ICON-R

  • EASS (Equality Advice Support Service) – Provides information and advice to individuals on discrimination and human rights issues including your rights under the Equality Act. 0808 800 0082
  • THT Direct – the Terrence Higgins Trust run a free confidential helpline for emotional support, information and advice on HIV, including problems you are having getting the social support you need 0808 802 1221
  • MyHIV – A website from the Terrence Higgins Trust to support people living with HIV as a long term condition.  As well as information and resources, MyHIV includes a confidential forum where people living with HIV can support each other and share experiences and advice. http://www.myhiv.org.uk/

[1] Equality Act 2010 http://www.legislation.gov.uk/ukpga/2010/15/contents

WHO DECIDES WHAT HIV SERVICES YOU WILL GET

When talking about health and social care services, commissioning describes the process of: 

  • identifying the needs of a population
  • planning how to meet these needs through appropriate services
  • deciding who will provide the services, and
  • paying for the services.

The recent changes to the NHS are changes to commissioning - in particular, who is now responsible for commissioning services.  This means that there are new processes for making decisions and new bodies and forums where these decisions are made.

HOW YOU CAN IMPROVE YOUR HIV SERVICES

The way health and social care decisions are made has changed. Central government now has much less direct involvement in what happens with NHS services in your local area.  There are new local decision making bodies which involve patients and local communities much more in prioritising the services they want. Local authorities (councils) have an increased role in planning NHS and social care services.

In this new system, the best way to be sure that local decision-makers are thinking about the needs of people living with HIV is to speak up on behalf of HIV during the planning process.

There are new opportunities to have your voice heard in the assessment of local health needs, planning and agreeing the services which are provided in your community.