Coping with illness

Despite HIV treatment, some people with HIV in this country still experience illness. There are about 800 new AIDS diagnoses every year in the UK, and about 400 HIV-positive people die every year, often of causes not normally thought to be related to HIV. Many more people with HIV experience less serious illness that they've probably developed because of the mild immune suppression that even well-controlled HIV can involve.

This section looks at some of the practical things that can be done to make your life easier if you are experiencing illness, whether because of HIV or another cause.

In many cases, it will be possible to treat your illness successfully and you’ll return to full health. Or it may be that you experience a side-effect, caused by a medicine you are taking, which either goes away or lessens in its severity with time.

However, if you have a very weak immune system and you lose strength, illnesses can become more persistent and harder to fight off, meaning that you need long-term help coping with the effects of illness.

Living an independent life at home can become harder in these circumstances, but there are ways in which you can be assisted to do this. Your local council will have a social services department (sometimes called health and social care) that will be able to offer a wide range of social care in your own home. Local voluntary organisations can also be helpful offering advice and practical and emotional support. What’s available will depend on where you live, and it’s important to remember that many local HIV organisations have closed or merged in recent years or have redirected their services towards other areas.

Often, however, it’s partners, family, friends or other informal carers who provide the most important support. Informal carers can be put under a lot of practical and emotional strain. They have their own responsibilities to consider, as well as caring for you, and caring for somebody who is ill will inevitably have an emotional impact on them.

The following are key professionals who may provide important services that will allow you to maintain your independence at home during periods of illness.

GPs are the only doctors who can visit you in your home. They can also arrange for other health professionals to come to your home, including community nurses. Some hospitals have specialist teams that act as a link between the hospital where you receive your care and local community health services. They can put you into contact with GP and community health services, and sometimes provide direct care themselves.

Community nurses can provide support, help and advice with all the practical aspects of coping with illness and taking medication at home, including changing dressings, looking after an intravenous drip and taking/giving injections.

They can teach you, or the people looking after you, how to take or give medicines by drip or injection and how to manage some of the problems of illness, such as lifting and bathing. Some community nurses also have specialist skills, such as pain control.

Occupational therapists (who are based both in hospitals and in council social services) offer practical ways of improving your quality of life, based on an understanding of your physical and emotional needs and your home environment.

After an assessment involving a detailed discussion of your needs and problems, an occupational therapist will try and work out with you how to solve practical problems at home, how to make tasks easier for you, and how to adapt your home to make it easier to live in and get around.

Palliative care aims to control symptoms and pain and improve quality of life. Palliative care aims to reduce the discomfort and pain of illness (or, indeed, treatment side-effects) to a minimum. Some HIV clinics have doctors who are specialists in palliative care or pain control, and there are also nurses, physiotherapists, occupational therapists, dietitians and other members of your healthcare team who can also help.