With effective treatments available for HIV, the majority of people diagnosed with HIV in the UK now have a very good prognosis and long life expectancy. However people living with HIV still need to be able to access comprehensive health care to enable them to live well with HIV.

Many people will experience side effects from HIV medication and may also have conditions relating to their HIV status. People also need support and information to help them come to terms with an HIV diagnosis and manage their condition effectively.

We are campaigning for better treatment and care for people living with HIV and for people living with HIV to have more involvement in planning their own care.

Treatment

Thanks to advances in treatment, people living with HIV are enjoying longer and healthier lives than ever before. Antiretrovirals are the class of drugs used to treat HIV, which block the virus in different ways. Usually a combination of at least 2 or 3 antiretrovirals are used and most people will only need to take drugs twice a day now, some only once a day

People living with HIV need to keep strictly to their treatment regime, which is known as adherence. Taking the drugs in the right way and the right time is very important; missing a dose of anti-HIV medication can lead to drug resistance. At least 95% adherence to treatment is needed to avoid this from happening.  The more drugs a person becomes resistant to, the fewer options they have for future treatment.

Despite the many benefits treatments bring, HIV still has a serious impact on people's lives. The drugs are very powerful and it often takes time for the body to get adjusted to them. Common side effects include nausea, fatigue, diarrhoea, mood changes and anxiety.  People who are on effective treatment may also still experience a range of fluctuating or constant symptoms related to their HIV.  NAT’s survey of fluctuating symptoms of HIV found that half of people living with HIV will experience at least one HIV-related symptom of treatment side-effect in a typical month.

Not everyone in the UK has free access to the HIV treatment they need.  Some migrants are charged thousands of pounds to access life-saving treatment.  NAT is campaigning for an end to treatment charges.  To find our more, visit the People in Greatest Need section of our website.

For a more detailed update on available treatments, treatment failure, drug resistance and side-effects please visit the following websites:
www.aidsmap.com, www.i-base.info

London HIV Drugs Prescribing

In March 2011 the London Specialised Commissioning Group (SCG) announced new 'prescribing messages' for London clinics which aim to maintain the highest clinical standards of care whilst reducing costs.  There are new recommendations on the combination of drugs with which most patients would begin anti-retroviral medication as well as recommendations to discuss switching patients on Protease Inhibitors (PIs) other than atazanavir from that PI to atazanavir.  Details of the prescribing messages can be found here. Another important source of information is NAM

NAT 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.

Any London patient concerned about how these changes might affect them should in the first instance talk to their clinician.  Individuals can also call THT Direct on free call number 0808 802 1221 if they feel they are being pushed to change treatment when they do not want to.

Patients at London clinics who have been asked to change their treatment or who have changed their treatment since April 2011, are also encouraged to complete the UKCAB community survey - responses are anonymous.  To take the survey, please click here.

NAT would also be interested to hear of any cases where the standards set out in the London SCG response to NAT are not being met.  Please email info@nat.org.uk with the Subject heading 'London Prescribing' and outline your experience.  Information will of course be kept totally confidential.

NHS reforms

NAT works closely with the NHS in all four nations of the UK.  NAT is committed to campaigning for the NHS to provide the best possible treatment and care for people living with HIV, as well as prevention services to stop new infections. We are working to improve the commissioning and delivery of healthcare for people living with HIV and ensure that their needs and rights are considered at all levels.

There are currently considerable reforms to the NHS taking place.  NAT is keeping abreast of these new developments and taking action when appropriate to ensure the views and interests of people living with HIV are represented in this process.

NAT has responded to a number of the consultations linked to the NHS White Paper 'Liberating the NHS'.  You can read the responses below:
Transparency in outcomes – a framework for the NHS
Local democratic legitimacy in health
Commissioning for patients

The Government then responded to these consultations by publishing a ‘Legislative framework and next steps’.

Public Health Reforms

In their white paper published at the end of 2010, the Government launched a radical overhaul of public health in England. Under these proposals responsibility for public health at a local level, including health improvement, will shift to Local Authorities.

A new professional public health service called Public Health England will be created with responsibility for commissioning/providing national-led health improvement services, including appropriate information and behaviour change campaigns. It will also have responsibility for funding and ensuring the provision of a number of services including sexual health.

These proposals were out for consultation and you can read NAT's responses here:
Healthy Lives Health People consultation response
Funding and commissioning routes for Public Health consultation response

The Government also plan to create a new Public Health Outcomes Framework which sets out the outcomes against which Local Authorities performance can be assessed. The draft framework includes an outcome aimed at reducing the level of late HIV diagnosis. However the framework has also been consulted on and the Government’s intention is to reduce the final number of outcomes considerably.

NAT argued strongly for the retention of the HIV late diagnosis outcome, as did many of the Policy Network organisations. You can read our response here:
Public Health Outcomes Framework consultation response

NAT will be following developments around the changes to public health and lobbying on HIV prevention and testing whenever the opportunity arises.

Confidentiality in healthcare

NAT has done a review of confidentiality in healthcare for people living with HIV in the UK.  Confidentiality in healthcare for people living with HIV focuses on why medical confidentiality matters for people living with HIV, what people should expect from the NHS, and what changes to NHS information sharing will mean for people living with HIV. The report has sections on contact tracing, criminalisation, testing in different settings, and new NHS IT systems.

Psychological support

Research shows that people living with HIV are more likely to have a mental health problem such as anxiety or depression, compared with the general population.  This can have on physical health and how someone manages their HIV.  For example, depression is shown to have an effect on how well someone adheres to their HIV treatment.  Someone’s psychological well-being can also influence their behaviour, including whether they engage in unsafe sex.

NAT’s looked into the provision of Psychological support for people living with HIV and found that these needs are not being met consistently or being addressed strategically. 

In response, the British Psychological Society, BHIVA and MedFASH, working with a number of stakeholders including NAT, have developed standards for psychological support services for people with HIV. For more information about the standards or to order hardcopies of the report contact policyandcampaigns@nat.org.uk or visit the MedFASH website.

English HIV and Sexual Health Commissioners Group

NAT provides leadership and administrative support for the English HIV and Sexual Health Commissioners Group, the professional forum for those engaged in undertaking Sexual Health & HIV Commissioning activities in England. The group works together, and with the Department of Health, to ensure they deliver consistent and high quality services (prevention, treatment, care and support) across the country.

If you work in sexual health or HIV commissioning and would like to join the group please email policyandcampaigns@nat.org.uk.