This section describes the types of services that are available to those living with HIV across the UK. What is available will depend very much on how developed services are in your local area, and you should check with your local Social Services Department, local primary care trust (PCT), or a local voluntary agency for exact details of what is available in your area.

These are listed in the UK AIDS Directory.

Local authority responsibilities

The NHS and Community Care Act (1993) split the responsibility for health and social care services between health authorities and local authority social services departments.

In 2002 the National Health Service underwent extensive re-organisation. England now has four Directorates of Health and Social Service (North, Midlands & Eastern, South and London), which together cover 28 Strategic Health Authorities (SHAs), which themselves contain 301 Primary Care Trusts (PCTs). Wales now has its own NHS Directorate as part of the National Assembly for Wales. By April 2003, it will have re-organised its existing five Health Authorities into three regional ones (South, Mid & West, North).   

The division between health and social care sounds fine in theory, and there are many services which are clearly the responsibility of one or the other, e.g. hospital in-patient services are always funded by the NHS. In practice there are many community services, for example HIV drop-ins, which provide both health and social care. Different arrangements exist in different areas for the funding of HIV community services – in some areas the NHS takes the lead, whilst in others local authorities do. Sometimes, HIV services are jointly funded by both agencies.

Due to the way services are provided and funded it is difficult for those of us living with HIV to keep track of what is available and how it is best accessed. We suggest that whether your initial or primary contact with services is through a clinic, your GP, social services, or a voluntary organisation, you should ask for advice and information about services available to you.  Many health and local authorities publish leaflets containing details of all the HIV services available locally. However leaflets do go out of date, services change, and even the most skilled worker might not be able to keep up with everything that is on offer – so keep asking if you have needs that you think ought to be met.

If you are unwell, you may be eligible for a social services care manager who will be able to help you decide what services you might want, and help you make choices about your care (see Social Services below).

Hospital HIV services

Hospital HIV services play an important part in HIV care. In particular, regular health checks with an experienced HIV doctor are very important as a means of monitoring overall health, checking the strength of your immune system, and can be an important way of recognising infections early and even preventing some disabling illnesses. Avoiding or delaying visits to hospitals or clinics may lead to some problems getting worse and may cause unnecessary worry or distress.

This is particularly important if you are receiving treatment with anti HIV drugs. Regular tests to check that the drugs are working properly are an essential part of taking them.

Hospital services usually offer a lot more than tests and medical treatment. Most hospital HIV or GUM services have health advisers. They can offer regular support, answer questions about HIV and AIDS, about treatment and medical conditions, and can help you make the most of other services.

Many hospital clinics also have nutritionists to advise and help you with issues of diet, specialist counsellors and psychotherapists, social workers and occupational therapists who can assist and advise you on how to live as independently as possible. Some clinics may also arrange group meetings for patients to learn about developments in HIV treatment and care.

In response to the general consensus that for treatments to be effective, they need to be taken in the right doses at the right time on an ongoing basis, many clinics now offer specialist adherence or treatment support clinics which provide access to specially trained staff such as clinical nurse specialists, pharmacists and psychologists.

Dentists

All dentists can and should be able to offer dental care for people living with HIV. But, notoriously, not all are willing to do so. Telling your dentist about your HIV status could enable them to consider alternative treatments to protect you from unnecessary infections. If your dentist is unwilling to provide you with dental care, there are a number of specialist dental clinics who may either give you the treatment you need or give you details of local dentists who are willing to provide treatment for people with HIV. Your local PCT will be able to give you details of specialist clinics.

If you are unsure of how to find a dentist who is not going to discriminate against you because of your HIV status use your local voluntary organisation or health adviser to help you.

Involving your GP

Some hospitals are now attempting to work closely with local GPs to develop 'shared care' for people with HIV (and for other care groups). This means that many of us with HIV may (or already are) able to receive treatment and care through a partnership of a GP and a hospital clinic. For some of us this may be more convenient, especially if the hospital clinic is a long way from home and will certainly be of help with matters such as non-HIV, routine and out-of-hours care.

There is another reason for HIV clinics involving GPs – the cost of HIV therapy. Just before this article was written, the consortium of HIV clinicians and commissioners that provide HIV care in London announced that because there was a projected overspend of at least 4% on the HIV drugs budget for 2005/6, they were planning to severely restrict the list of drugs that could be prescribed by HIV clinics and would be referring patients to GPs for non-HIV related medication such as anti-depressants, sleeping pills, skin preparations, asthma drugs and various others.

HIV patients are often reluctant to get their GPs more involved in their care for three reasons:

• They have had problems registering with a GP anyway.
• They are not convinced that GPs have the expertise to help with HIV care.
• They are concerned with their GP knowing their HIV status due to worries about confidentiality.

Regarding the first point, many GP practices, especially in inner-city areas, are over-subscribed and for financial reasons practices are sometimes reluctant to take on patients with chronic conditions like HIV or hepatitis B/C. Anyone who has residency status in the UK is entitled to register with a GP and is also entitled to have a choice of GPs from within their PCT. In general you are required to register with a GP whose ‘catchment area’ includes your address, but you are entitled to a wider choice if you have special needs such as not having English as a first language.  If you are having difficulty registering with a GP, you can log on to http://www.nhsdirect.com/ or phone NHS Direct on 0845 46 47 and explain that you are having problems. In cases where you feel you have been discriminated against, phone up your local PCT and ask for PALS – The Patient Advocacy and Liaison Service.

At the end of this section is a list of the PCTs in London, including contact details for PALS, and information on how to take a complaint further.

Regarding the second point, the Sexual Health and HIV Strategy for England and Wales is clear that it is not government policy to get GPs involved in specialist HIV care such as deciding on anti-retroviral treatment regimens. The problem is partly a question of GPs themselves receiving better training in HIV and of GP practices taking on board the Strategy’s suggestion that certain practices should specialise in sexual health. In the meantime it is vital that your GP is aware what HIV treatments you are on (and what complementary treatments, too) so they can prescribe with confidence that you will not experience drug interactions.

This leads on to the third point, which unfortunately is still an unresolved area. GPs cannot ethically lie to employers or providers of insurance when questioned directly about patients’ HIV status. Some GPs however are happy not to record your HIV status in your files if requested. It is important to have a frank talk with your GP about this area - you are entitled to ask for information to be removed from your records if you don’t want it there, though it is still important to make sure doctors are aware of your status.

If you were to decide that you feel happy to involve your GP more actively, you should discuss this with your hospital doctor or health advisor the next time you visit your clinic. Get them to tell you- or find out if they do not know- the level of knowledge, interest and expertise any prospective GP has about HIV. If you are unhappy with your GP you will be able to change to another one in your local area. Some GP surgeries also have practice nurses now and these may be able to offer you additional advice and support.

Most GPs are now classified as 'fund holders'. This means that they have budgets to buy some community services, e.g. district nursing.

What to do if you are unsatisfied

If you are unhappy with the health services in your local area there are mechanisms in place to deal with suggestions and complaints. It may be just a matter of seeking advice from an advocacy worker at a local HIV charity about how best to deal with your doctor or access the treatments or advice that you want.

All health services have formal and informal ways that we can express dissatisfaction with the service that we are receiving- or trying to access. If you are dissatisfied with any of the health services you are receiving, you should raise this in the first instance with the person providing the service or their line manager. You do not need to put anything in writing at this stage. If you are still unhappy, you should contact the Chief Executive of the Hospital or Community Health NHS Trust, or the Chief Executive of the PCT. They are required to fully investigate your complaint and reply to you within a few weeks. This process can seem very daunting however- even at the informal stage of raising the issue with the person concerned or their manager. However, unless we tell the people who are paid to provide the services to us when we think they are getting it wrong, how can we expect things to get better?

IF ALL ELSE FAILS there are two further levels of complaint. The first is the Independent Complaints Advocacy Service (ICAS) which is an independent body set up by the Department of Health to assist people who want to take out serious complaints against the NHS. Its phone number is 0845 120 3784.

The last is the Parliamentary and Health Services Ombudsman which has the power to compel even the Department of Health to make changes. Phone 0845 015 4033 or email phso.enquiries@ombudsman.org.uk