UK Community Advisory Board (UK-CAB)

Integrated Care Systems and HIV Care in London

Integrated Care Systems (ICSs) are expected to come into place around April 2023. It is important to share with the community what the move to ICSs could mean for patients, policy and practice. People living with HIV and services will need to be ready to feed into any changes to the commissioning rules and processes, at what might be short notice.

The move to ICSs raises important questions for people living with HIV about their care. There is also a window of opportunity to ensure that ICSs have HIV on their agenda, and that people living with HIV aren’t left behind in their local area.

On Tuesday 24 January 2023 NAT (National AIDS Trust) and UK-CAB facilitated a community discussion to inform the community of these changes as they apply to London, what this means for their care, and to discuss what the potential opportunities to inform future policy and practice might be.

Introduction to ICSs

Dr Jonty Heaversedge, Joint Medical Director, NHS South East London ICS.

This presentation and videos explored an introduction to ICSs and changes to the health and social care systems, and outlined the changes which are already in place.

Presentation [Download]

What do ICSs mean for HIV care?

Kat Smithson, Director of Policy and Communications, NAT

The discussion followed on from Jonty’s presentation and asked questions about what the move to ICSs could potentially mean for HIV care.

“In this transitional phase, it is hard to be definitive on what the shift to ICSs will mean for HIV care planning. There has been consistent messaging from NHS England that quality and delivery of care will not be affected, but some uncertainties remain around the impact of these changes to commissioning.

The reform underway undoubtedly generates some opportunities. The overall logic of ICSs is to improve the integration and coordination of care. This should create structures that allow for improved collaboration and coordination with other health and social care services that meet the needs of people living with HIV.

ICSs are also intended to be more responsive to the particular needs of those using their services. Guidance from NHSE designed to support Integrated Care Boards to include individuals and third sector organisations in their planning and strategic decision-making should mean that this enhanced responsiveness is centred in lived experience.

However, this new geographical-footprint style of organisation also presents a problem, because many people living with HIV travel across ICS boundaries to access care. While we have been assured that open access treatment will remain available, the objective of planning to meet the needs of local populations doesn’t take into account those who do not access care in their local areas.

Associated concerns about retaining national standards of care, are less prominent now that NHS England has given assurance that national service specifications will remain and will underpin provision[1] and that the functions of NHSE’s HIV Clinical Reference Group will remain unchanged.

NAT will continue to work closely with other stakeholders to ensure that any issues on the management of HIV care will be addressed prior to full delegation of responsibility to ICSs in April 2024.”

What the community wants ICSs to achieve

Mel Rattue, Chair of the Community Advisory Group for Fast Track Cities London

This discussion explored the role of the HIV community in changes to the health system, how meaningful involvement can be maximised, and why continued engagement with people with HIV is essential as we learn more about future changes to health and social care.

Evolving HIV Care Report – Fast Track Cities (London) [PDF]

Presentation [Download]

Panel discussion: How the new system can work for people living with HIV?


Chris Lovitt, Deputy Director of Public Health at City of London and Hackney Council.

Juddy Otti, HIV Support and Prevention Manager, African Advocacy Foundation.

Alex Sparrowhawk, Chair, UK-CAB.

Dr Iain Reeves, Consultant physician in sexual health and HIV, Homerton Hospital.

Panel notes:

Panellists discussed pros and cons of the move to ICSs, citing room for collaboration and the opportunity for community consultation from the HIV sector as positive opportunities. It was mentioned that it is very unlikely, from a HIV clinical perspective, that things will cease to stop working. The move to ICSs does create quite a lot of uncertainties, however, the room was assured that quality of care will not be jeopardised.

The panel were then asked what might the practical effects of the move to ICSs be for HIV care? They agreed that central to everything is ensuring that care is individualised and person-centred. Everyone completely understands the anxiety around the uncertainty of the future of HIV care, however, it is important that we look beyond HIV care and view this as a whole-person issue. There are other issues, outside of HIV care, that need to be considered that impact how we live with HIV. For example, immigration status and how this might affect adherence and access to care. Questions were raised to how patients experiencing other issues – outside HIV, like the above – might access care under this new system. It was noted as a priority for the HIV sector to ensure that these individuals are considered in conversations around ICSs.

The panel were then asked by the audience about why this is happening – why is a new system needed? The panel discussed that the actual system of ICSs is not new, and it’s a reinvention of the same system we had in the early 2000s. It was mentioned that HIV is held up in good regards because regardless of the structural changes the NHS makes, people centred care is always paramount. The HIV sector now has to double down on its efforts because the move to ICSs means the story needs to be retold again.

Further resources

The King’s Fund

How does the NHS in England work and how is it changing? [YouTube]

National Voices

Working with the Voluntary, Community and Social Enterprise Sector – A briefing for Integrated Care Systems leaders [PDF]

[1] The HIV specification for adult services is currently being updated. Plans for revision of the service specification for children are currently unknown.