Treatment, care and support

HIV treatment was transformed with the introduction of Anti-Retroviral Therapy (ART) in 1996.  ART means that most people, if they are diagnosed early and adhere to medication, can manage their HIV as a long-term health condition and look forward to a near-normal life expectancy. 

In the early days of treatment, people with HIV had to take a very large number of pills, often with complex timing and/or dietary requirements.  Advances in treatment now mean most people starting ART will only have to take one or two pills a day. 

There are side-effects for some people who take ART, including fatigue, depression and diarrhoea, though these are increasingly well-managed.  There is a reporting scheme for side-effects of medicines known as the 'Yellow card reporting scheme' and anyone with HIV is encouraged to consider reporting adverse reactions to their drugs via this scheme.  More information on the Yellow card reporting scheme is available from HIV i-Base, where you can also download a form to report side-effects.

There are a number of specialist HIV organisations which provide detailed, expert and easily understandable advice for people with HIV on HIV drugs and treatments. NAT recommend you visit NAM and HIV i-Base for further information.

If you would like to hear personal experiences of managing HIV medication, MyHIV  has video galleries and discussion boards of people talking about their experiences.

For more about what to expect from your HIV treatment in England, visit our My Care My Voice resource

From April 2011 changes were introduced to the prescription of antiretroviral medication in London hospitals. These changes were developed to reduce the amount of money spent on HIV drugs. It was emphasised that no patient would be given sub-optimal therapy or therapy that involves a risk of serious side effects. There are new recommendations on the combination of drugs most patients would begin treatment with as well as recommendations to discuss switching patients on some protease inhibitors. You can find more information on drug prescribing changes at the NAM website.

NAT has had concerns over how this process would be undertaken, in particular discussions on switching stable patients to a different drug regime, and on how the new prescribing messages were being communicated.  We published a Statement on changes to HIV drugs prescribing in London, outlining areas where further clarity and reassurance were needed.

NAT has now received a response to our concerns from the London Specialised Commissioning Group.  This response provides important reassurance and clarity in a number of areas.  There is also a helpful letter from HIV doctors with explanation of the ARV prescribing messages and reassurances as to the process on the London SCG website.NAT has continuing concerns over the use of rewards and sanctions for clinics as incentives in this process, and we will continue discussions with the London SCG.

Social care is the additional care needed to stay well and cope with living with HIV, beyond your medication.  This can include a range of services such as peer support, counselling, personal care, practical support and respite care.

Social care support should be available to help people with HIV who need it to help them cope on a day-today basis.   You can access social care support either through your local social services team or through local voluntary sector organisations in your area.

Local authorities are currently facing serious financial pressures and NAT has been making the case at a local level for adequate HIV social care services to be maintained in all parts of the UK. For more information on the work we have been doing and how you can get involved visit NAT’s information on social care.

For more about your entitilement to social care in England, visit our My Care My Voice resource

Good psychological and emotional support can be essential for people's health and well-being. People living with HIV often need support and information to help them come to terms with their diagnosis and manage their condition effectively. 

It is very important for people living with HIV to get any help and support that they need. There is more information about mental health on the NAM website, where there is a list of places to go for further help. You can also access direct online counselling, advice and health trainer support via MyHIV.

NAT has been doing a lot of work to understand the range of mental and emotional needs that people living with HIV have, and to make sure that services meet these needs effectively. You can read more about this work here.

For more about your entitilement to psychological support in England, visit our My Care My Voice resource

Yes. 

HIV is exempt from NHS charging rules in England.  This means that HIV treatment is freely available to everyone who needs it, regardless of their residency status.

In Scotland, Wales and Northern Ireland there are different rules, but in practice HIV treatment is usually freely available to asylum seekers and migrants who need it.

Although HIV treatment is free, certain migrants may be charged for accessing other NHS services.  For further information, download NAT and THT's factsheet Will I have to pay. 

For more about accessing treatment in England, visit our My Care My Voice resource.

The Health and Social Care Act 2012 has brought significant changes to how NHS, Public Health and Social Care services are planned and delivered (‘commissioned’) in England. 

Decisions about healthcare will increasingly be made at the local level.  GP-led groups called Clinical Commissioning Groups (CCGs)  are responsible for commissioning most treatment and care.

However, because HIV is a complex and relatively rare conditiion CCGs arel not be responsible for HIV healthcare.  Instead, a central authority,  NHS England ,are responsible for HIV treatment and care.  This is to ensure that HIV services continue to be of a consistently high standard in the new system. NHS England isalso be responsible for GP services.

All sexual health services except for HIV is be the responsibility of local authorities.

The increased local control will be an important opportunity for people living with HIV and the organisations who support them to shape services in their area.  

To find out more about the new NHS in England and how your voice can be heard by decision makers, visit our My Care My Voice resource

NAT is always keen to get feedback from people living with HIV.  It’s good for us to know if our information and resources are helpful or if there other things you want to know.  Your experiences can also inform our policy work and assist us in campaigning for people living with HIV to be treated fairly, and with dignity and respect.  To get in touch with us, please visit our feedback page and let us know your thoughts.

NAT’s vital work can only continue with the generous help of our supporters.  There are many ways you can support us without costing you a penny, such as getting involved in Press Gang, becoming an HIV Activist or signing up to a ‘no cost’ fundraising activity. If you’d like to support our work, click here to find out the different ways you can help.