Complexity of health system is 'holding back progress' in HIV care

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The complexity of the health system in England is holding back progress in meeting the needs of people with HIV, according to a new report from The King’s Fund.

The report highlights how improvements in treatment mean that, 30 years on from being seen as a death sentence, people with HIV are able to live longer, healthier lives. This means that for the first time we are seeing significant numbers of older people with the condition; already, 30 per cent of people with HIV are aged 50 or over and this is projected to rise to 54 per cent by 2028.

Because of this, health services need to focus on quality of life rather than just on suppressing the virus, and also need to co-ordinate care with that for other long-term conditions common in older people.

But while HIV care in England is among the best in the world, the report, funded by the M·A·C AIDS Fund, found that the Health and Social Care Act 2012 has created a complex and fragmented system for HIV care. Responsibility for delivering services is spread between NHS England, local NHS organisations and councils, which has made it harder for areas to make co-ordinated changes across HIV services.

While the number of new cases of HIV has fallen overall, national data shows infection rates are still increasing among gay and bisexual men, underlining the need to focus on prevention. The report calls for NHS England and Public Health England to work as quickly as possible to make pre-exposure prophylaxis (PrEP) more widely available and to further increase HIV testing.

The research team for the project included people with HIV and the research included focus groups of people with HIV, and people working in the NHS and local government. The report calls for much clearer and stronger leadership for HIV services, and for NHS organisations and councils to work together on HIV care in their area. It argues that sustainability and transformation plans (STPs) provide an opportunity to do this and describes one area that is making good progress that others could learn from.

In London, the need for change is urgent – nearly half of all people with HIV in England access services in the capital and the city has the highest rate of new diagnoses.

Alex Baylis, Assistant Director of Policy for The King’s Fund, said: ‘Health care for people with HIV in England is among the best in the world and that is something we should be proud of. But this report is a warning that the labyrinthine structures created by the Health and Social Care Act make it harder to keep the focus on meeting people’s needs and represent a real threat to future quality of care.

‘The health needs of people with HIV are changing rapidly, but health care for people with the condition is too fragmented to be able to keep up with this pace of change. The number of older people with HIV is rising and they are more likely to need care from other parts of the health and social care system, and so joined-up working will be vital to them getting the care they need.’

Nancy Mahon, Global Executive Director of the M·A·C AIDS Fund, said: ‘The HIV epidemic has shifted dramatically in the past decade. Advances in treatment and care mean that many individuals living with HIV have normal life expectancies and, as their needs evolve, we must ensure that health services adapt accordingly.

‘This landmark report is critical to ensuring that decision-makers across the health system in England are able to navigate a complex system and work together to best address the HIV epidemic over the next decade. At M·A·C, we believe we will see a future without HIV in our lifetime, and we are proud to be funding this work by The King’s Fund which will help make this a reality.’

Notes to editors

  • The future of HIV services in England: Shaping the response of changing needs will be published by The King’s Fund on 25 April. The report is being launched at a conference at the Fund.
  • The research took place between June 2016 and January 2017 and analysis of existing evidence and data, interviews and focus groups with people with HIV, as well as those working in national bodies and in local areas in both NHS and local government.
  • There is strong evidence that pre-exposure prophylaxis (PrEP), an anti-retroviral drug, helps prevent HIV. Last year, the courts found that NHS England could fund PrEP, just as it funds other preventive treatments such as statins. A research project is now looking at how PrEP might be made available on the NHS and what the implications would be.
  • This research was funded by a grant from the M?A?C AIDS Fund. It was carried out independently and the findings are The King’s Fund’s alone. We are grateful to the M?A?C AIDS Fund, the philanthropic arm of M?A?C Cosmetics.

The King's Fund is an independent charity working to improve health and care in England. We help to shape policy and practice through research and analysis; develop individuals, teams and organisations; promote understanding of the health and social care system; and bring people together to learn, share knowledge and debate. Our vision is that the best possible health and care is available to all.

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