Advice and advocacy

Knowing how to get advice about anything concerning being HIV–positive may seem a bewildering prospect, but there are many organisations which can either provide you with the information or help that you need, or point you in the right direction. You may also be able to obtain direct assistance in getting what you need from advocates, who will obtain services or information on your behalf. There are many people out there who are willing to help you – doctors, social workers and other professionals, volunteers or other people living with HIV.

Many local health and social services have key workers who act as points of contact for all other services you may need. Advocacy may also be available from local voluntary organisations, and there's help available to try to get you the best possible deal from the Department of Social Security and officials generally, whether it relates to your welfare or civil rights.

Some voluntary organisations provide Peer Advocacy  – advice and help from someone of the same HIV status, gender and or ethnic background as yourself working alongside you to get your needs met.

Such organisations also lobby policy makers, government, providers and commissioners of services, with the concerns of those of us living with HIV.

UK Coalition of People Living with HIV and AIDS

250 Kennington Lane, London SE11 5RD

Phone: 020 7564 2180

Fax: 020 7564 2140

Terrence Higgins Trust

52-54 Grays Inn Road

London

WC1X 8JU

Helpline: THT Direct 0845 1221200

Website: www.tht.org.uk

Bereavement and death

When someone dies there are many practical issues to deal with. With HIV infection there can be additional issues such as infection control or dealing with ignorance or prejudice.

The Department of Social Security publishes a free booklet entitled What to do after a death, which contains useful information about what must be done and what help is available. Many social and health care professionals can provide further information or assistance where a death has occurred, including how to register deaths and obtain medical certificates, who to contact about arranging funerals, and how to apply for financial assistance from the DSS Social Fund.

Most organisations which provide counselling for people living with HIV also provide emotional support for people who have been bereaved. Two specialist voluntary organisations offering bereavement counselling are:

Cruse Bereavement Project

Cruse House, 126 Sheen Road, Richmond TW9 1UR

020 8332 7227

Lesbian and Gay Bereavement Project

020 7403 5969

Children

Children with HIV infection will have special needs and concerns and there are agencies that have been established to deal with these. They can give advice on many issues including risks of HIV transmission, who to tell and how to deal with schools. Many local authorities have specific social care professionals who work with children and can provide you with particular help and advice. See Children, adolescents and families later in this volume for more detailed information about services available.

Cleaning

You can get help with cleaning if you need it, from voluntary organisations and from social services, either on a regular basis or for a short period if you are unwell. Contact your local voluntary organisation or social services department.

Clinical waste disposal

Local authorities or councils have a duty to provide free collection services for clinical waste e.g. needles, syringes, soiled dressings etc, and can collect waste from home. The service should be confidential – speak to a health or social care professional about referral, or contact your local authority's Environmental Health department – and you don't have to tell the service you have HIV.

Community care

The services you receive from you local authority will be provided under the heading of 'Community Care'. The Government's Community Care legislation aims to enable local authorities to help people live in their own homes 'in the community', rather than separating them from society in closed hospitals or other institutions. For more information, see Services for people with HIV & AIDS, above, or speak to a social care professional in your local social services department.

Community nursing

You can receive nursing care at home from district or community nurses, or from Clinical Nurse Specialists (HIV/AIDS). Community nurses can provide support, help and advice about changing dressings, help with IV drips, give injections, give you equipment to help with physical problems, give advice on health, or teaching other carers. Clinical Nurse Specialists (HIV/AIDS) have particular experience in providing advice, support and care for people living with HIV or AIDS and can provide intravenous therapy, symptom or pain control, advice about anti HIV drugs, and advice and care should you wish to die at home. Speak to your doctor or a social care professional about how to contact community nurses.

Complaining about services

Most voluntary AIDS service organisations and all hospitals, health and local authorities have formal complaints procedures should you feel you have been inappropriately treated or served. If you do experience problems or are unhappy with a service, give that person a chance to sort out any misunderstanding, keep a record of events, and know your facts. If you are still dissatisfied, ask the person you are dealing with to provide you with details of how to complain.

Complementary therapies

There are many different kinds of therapies available which may complement the medical treatment, health or social care you receive. Therapies such as massage, acupuncture, aromatherapy, relaxation, yoga and creative therapies are offered by many voluntary AIDS service organisations. To find out more, see NAM's Directory of Complementary Therapies in HIV & AIDS.

Dental services

All dentists should be able to treat people with HIV. If you tell your dentist you have HIV and they are unwilling to treat you, you may be able to get referred for specialist dental treatment by your GP or clinic doctor. Many hospitals have special dental clinics and your health authority may have a district dental officer who can direct you to community dentists experienced in treating people with HIV.

Family services

Many local authorities have specialist social care providers who work with children and families. Furthermore there are a number of organisations who provide service to families affected by HIV and AIDS, such as:

Positive Partners and Positively Children

Unit F7, Shakespeare Commercial Centre, 245 Coldharbour Lane, London SW9 8RR

020 7738 7333

See also Positively Women and Body & Soulabove, under counselling and psychotherapy: London organisations

Food and nutrition

A number of services are available depending on where you live. Some local authorities provide 'meals–on–wheels' services. Many AIDS service organisations offer cheap meals at their centres and in some cases specialist meal deliveries to your home.

You may also be able to seek nutritional advice from dieticians who are often attached to hospital clinics.

The Food Chain

http://www.foodchain.org.uk/ - 020 7272 7272 - info@foodchain.org.uk

Provides meals free of charge to HIV positive people in London who cannot cook for themselves.

Gay men

There are a number of organisations which focus on advice, support, sexual health education and information for gay and other men who have sex with men. See counselling and psychotherapy  above for some that offer emotional support.

Some health authorities have dedicated gay men's workers who specialise in sexual health issues for gay men. There are also a growing number of hospital clinics in London who offer specific sexual health clinics for gay men, including gay men living with HIV or AIDS. A useful organisation to contact if you are a gay man living with HIV and want advice, support or information:

GMFA

Unit 42, Eurolink Centre, 49 Effra Road, London SW2 1BZ

020 7738 6872

Relies on gay male volunteers to develop and carry out sexual health education and information access initiatives.

Haemophilia

If you have HIV and haemophilia, you can get advice, support and help from:

The Haemophilia Society

Chesterfield House, 385 Euston Road, London NW1 3AU

020 7380 0600

They will be able to give you information about local groups offering help and information.

See also the chapter on Haemophilia later in this volume.

Health advisers and visitors

Clinic–based health advisers and community–based health visitors can provide you with a range of advice, support and information about living with HIV. They may also be able to refer you to other useful services.

Building a relationship with a health adviser in a clinic can be invaluable as they generally have more time to talk to you (and offer a broader perspective) than doctors.

Home care

There is help provided by both local authority social services and voluntary organisations for support with day–to–day household chores such as cleaning, shopping and cooking.

Nursing care at home is also available (see Community nursing above), and social services departments can be a source of help with home adaptations like stair–lifts, hand rails, bathing aids, telephone installation and washing machine/cooker/microwave loans.

Hospices and terminal care

A number of organisations provide care for people who are dying. Hospices provide hospital–style terminal care where medical staff can provide pain or symptom control. If you are terminally ill and wish to die at home, you can receive ongoing nursing care.

Housing and utilities

There are a number of potential problems related to HIV. You may have the threat of eviction or other harassment hanging over you. You may have difficulties in meeting rent or mortgage payments. You may be homeless or living in sub–standard accommodation. You may find you need certain home adaptations and special equipment. If you are experiencing any housing problems, it's important to seek advice or help as soon as possible. Local authority housing and social care professionals can be an invaluable source of help, as can organisations experienced in giving housing advice.

Languages, interpretation and translation

Many hospital trusts, health and local authorities have interpretation and translation services for people who do not have English as their first language. A number of helplines also have times when their phones are staffed by people speaking specific languages, including:

National AIDS Helpline

0800 917 2227

Call for details of language services offered.

Naz Project

Palingswick House, 241 King Street, London W6 9LP 020 8741 1879

Call for details of language services offered.

AFAS

6 Osnaburgh Street, London NW1 3DH 020 7383 0489

Support for French speakers.

Language Line

http://www.languageline.co.uk/ - 020 7520 1430

Learning difficulties

There are a number of organisations who work with people with learning difficulties and many local authorities have specialist professionals who work with people with learning difficulties in need of specific social care.

Legal advice and services

See Advice and advocacy.

Leisure activities

Leisure passes are available from many local authorities for people who are unemployed, on income support or who are registered disabled – these can be used in various centres, swimming pools, gyms etc. Speak to a social care professional in your local social services department for more information.

Compass Support Group

c/o 36C Nevern Square, London SW5 9PE 020 7373 9091

Medical care

For information about medical care, see Services for people with HIV and AIDS above or the HIV & AIDS Treatments Directory. The following organisations can help you choose your treatments and decide how and if you can have these at home or at a local clinic or in hospital and give advice about up–to–date treatments and drug trials.

NAM
Lincoln House, 1 Brixton Road, London, SW9 6DE
020 7840 0050
http://www.aidsmap.com/

AIDS Treatment Update, published monthly; free to people with HIV.

HIV i-Base
HIV treatment information for healthcare professionals and HIV-positive people.
Treatment phoneline: 0808 800 6013 - Mon, Tues, Wed 12-4pm.
http://www.i-base.org.uk/
HIVTreatment Bulletin published monthly.

Terrence Higgins Trust
52-54 Grays Inn Road, London WC1X8JU
Helpline THT Direct 0845 122 1200
website: http://www.tht.org.uk/
Information centre, individual advice sessions, support groups.

Positively Women
347-349 City Road, London EC1V 1LR
020 7713 0444
Treatment information sessions and individual advice sessions.

Waverley Care Solas
2/4 Abbeymount, Edinburgh EH4 8EJ, Scotland
0131 661 0982
info@waverleycare.org
Treatment advice and information in Scotland. Phoneline open Mon-Fri 11-4.

Mobility

A number of taxi card and discount travel schemes are available. Social services workers should be able to advise about eligibility for local taxicard schemes, disabled driver 'orange badges', community transport schemes or travel permits.

Some AIDS service organisations can offer assistance with transport, and help with mobility around the house is likely to be available from home care providers (see Home care above).

Money and financial help

Contact the Terrence Higgins Trust for up-to-date advice on this subject. Benefits regulations change too rapidly and are too complicated to be included in the AIDS Reference Manual, and claimants require individual advice on how to claim successfully.

Occupational therapy

Occupational therapists or OTs are trained to help people who are ill or disabled live at home as independently as possible. If you are in hospital you can ask to see an NHS occupational therapist who will either help you prepare for when you go home, or will refer you to a local authority occupational therapist. Some local authorities have specialist HIV/AIDS occupational therapists, but all should have 'generic' OTs who will be trained and experienced in working with people with HIV or AIDS.

OTs can advice people with HIV and their carers on special equipment and adaptations to their home, advise and assist with rehousing, provide re–training and learning new skills following periods of illness, and provide advice, information and emotional support for problems which might affect your day to day routine.

Physiotherapy

A physiotherapist can help you deal with some of the special physical problems that illness can lead to. They can help you maintain your strength through special exercise and muscle development, help keep you moving if you are weak, advise on breathing problems, help you cope with the physical effects of neurological problems, swollen limbs or back problems. Physiotherapists work in hospitals, in clinics and in the community. If you attend a clinic, ask to be referred, or ask your GP.

Prisoners

The HM Prison Service Directorate of Health Care now has a focus on HIV training, care, support and liaison, looking at the provision of care and support for prisoners with HIV, training for prison staff, and liaison with health authorities and other groups working around HIV issues in prisons. The HIV Training and Liaison Officer can be contacted on 020 7217 6602.

Many health authorities and some health care providers are working with prisons and prisoners with HIV. To find out further information, contact your district health authority HIV Prevention Co-ordinator.

For more information see the chapter on HIV and prisoners.

Refugees

There are a number of organisations which can provide services to political or economic refugees from other countries. Some voluntary AIDS service organisations which offer services to people from particular minority ethnic or cultural backgrounds will be able to provide specific advice, support and information to people who have come to this country as refugees. You can also contact the Refugee Council or the Refugee Legal Centre.

See also The Law and HIV.

Refugee Council

www.refugeecouncil.org.uk/ - 020 7346 6700 - info@refugeecouncil.org.uk

Refugee Legal Centre

http://www.refugee-legal-centre.org.uk/ - 020 7780 3200 - rlc@refugee-legal-centre.org.uk

Religious support

There is a wide range of religious support and counselling available to people living with HIV infection or who are affected by it in any way. This may be through the mainstream or 'established' religious communities, or various other 'spiritual' organisations. Religious groups can offer both religious support and practical help.

A 'religious' response to HIV and AIDS should be a caring response, though in practice religious responses have varied from the truly compassionate to the completely inappropriate and judgmental. In no religion is there such a thing as one single agreed response to all the issues that HIV raises. For every harsh and intolerant attitude in any of the world's religions, there will be other compassionate and caring ones as well.

Respite and residential care services

In some parts of the country there are special HIV residential centres which are designed to feel more like home than hospital, and offer convalescence, respite, relief, on–going and terminal care. You may be eligible for respite care under the local authority's community care service, so speak to a social care professional.

Sex workers

Sex workers have specific needs in relation to HIV and AIDS which can be met by a number of organisations and groups. Access to condoms, sexual health education and care for people working in the sex industry is available from some hospitals and clinics, as well as independent or voluntary organisations and projects. See the UK AIDS Directory for a list of services for sex workers.

Sexual health services

Information, advice and care around your sexual health can be obtained from different places, especially hospital genito–urinary medicine departments or sexual health clinics. Many voluntary AIDS service organisations also provide advice and information about sexual health, preventing sexual transmission of HIV, and access to safer sex materials. For more information on specific sexually transmitted infections and what to expect when you go for treatment, see Sexually transmitted infections and sexual health in Safer sex.

Shared care

Many hospitals and clinics are beginning to devolve some of their medical treatment roles down to GP's, as part of the Government's NHS Community Care legislation. This may mean you will receive 'shared care and treatment' from both hospitals and a GP. It could be a good idea to find out as much information about shared care as possible, so speak to your clinic doctor or health adviser.

Shopping

You can get help with shopping if you need it, from voluntary organisations and from social services, either on a regular basis or for a short period if you are unwell.

Social workers

All local authorities and some hospitals have social workers, some of whom may be specialist in HIV/AIDS. However many social services have become less specialist and more 'generic'.

Social workers are there to help you live as independently as possible. A good social worker will give you advice and information about services you may be able to get from the local and health authority, the NHS and from voluntary and independent organisations. They can also help you get services organised, help you make grant and benefit applications, and provide emotional support. For more information about social services and community care, see Services for people with HIV and AIDS earlier in this chapter.

Telephones

Under the Chronically Sick and Disabled Persons Act, you may be eligible for assistance with telephone installation and rental. Speak to a social care professional in your local social services department.

Telephone helplines

There is a huge range of telephone helplines across the country, many specifically serving people with HIV and AIDS, others incorporating HIV issues into the services they provide for people such as those from different minority ethnic groups, lesbians and gay men or drug users. The National AIDS Helpline is a free and confidential service offering advice on HIV and AIDS and related issues.

National AIDS Helpline

0800 567123

Travel

Some countries restrict entry for people living with HIV or AIDS, so it's important to get as much information as possible before you travel abroad. It may also be a good idea to get information about treatments available in the country/countries you intend to visit. Information can be obtained from a number of sources. A list of travel restrictions for countries known to have policies on HIV and immigration can be found in Travel  below.

Visual impairments

There are a number of sources of support, information and services for people who are visually impaired and living with HIV or AIDS. Occupational therapists can help with adaptations to your home (see Occupational Therapy above). The Royal National Institute For The Blind can provide information and a wide range of services to people who are visually impaired or blind, including Braille versions and audiotapes of leaflets.

Royal National Institute for the Blind (RNIB)

224 Great Portland Street, London W1N 6AA

Helpine: 0845 766 9999

Welfare benefits advice

Many voluntary AIDS service organisations can provide advice and information about welfare benefits and what you may be entitled to. It is a fact that many people do not claim the benefits they are eligible for, so it's important to know exactly what you may be able to claim for. Many drop–in or day care centres will have welfare rights advisers for you to see, or you can speak to a social care professional. You can also contact your local Citizens Advice Bureau.

Women

Women living with HIV or AIDS may have particular issues or problems, such as increased difficulties in accessing quality services, obtaining appropriate care, support and advice, or issues around child care. A number of organisations offer services, information, support and advice specifically for and by women, such as Positively Women and Body & Soul, which both run support groups for women who are HIV–positive. The UK AIDS Directory lists services specifically for women in all regions of the country, including women's support groups.

Books about women and HIV are listed in Recommended resources.

Many GP surgeries and hospital clinics have health and medical care designed specifically for women. Check to see if any of your local GP surgeries have 'well women' clinics.

Social services can offer support with child care and child minding. You can be referred to a social services department social worker through a specialist HIV social worker at the hospital you attend, or else through any voluntary organisation. See Children, adolescents and families for more on help with child care.

Positively Women

347–49 City Road, London EC1V 1LR

020 7713 0222