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What does the Government’s new white paper mean for HIV prevention and care?


By Cheryl Gowar, Policy & Campaigns Manager

The way healthcare in England is organised and delivered has caused all sorts of problems for people living with or at risk of HIV. For five years we’ve known PrEP is effective but it’s only now, after legal wrangling, that we have an agreement on how it will be provided. Uncertainty around responsibility for HIV-specific vaccination schedules means that some GPs offer vaccinations while others don’t, leading to potential gaps in treatment. People newly diagnosed with HIV should receive referrals to specialist HIV support services, but these services are in a perpetual battle for funding because it’s not clear who should pay for them. The list goes on.

The Government has issued a white paper on integrating healthcare as an intended to solve problems like these. Integrated Care Systems (ICSs) have existed since 2018 but under the Government’s proposals they will have real power and budgets. They will take over the commissioning of secondary (specialist) care and have more responsibility for primary care (GP, dentistry, and pharmacy). The aim is to shift organisation of healthcare to a more local level and to generate collaboration among all local providers of care to meet local needs.

In theory this all sounds positive, but what does it mean for HIV care? These are our key concerns:

  • Specialised services, which include HIV clinics, are currently commissioned by NHS England. The proposals have left open whether HIV services will be transferred to ICS responsibility or if NHS England retains some control. It’s possible arrangements will be different depending on where you live. There must be no loss of service during the transition process, and where care is handed over to ICSs it’s vital decision-making continues to involve people with HIV expertise. Each ICS will have a board and Partnership Council which includes representatives from across care providers. There must be a clear way for people living with HIV, clinicians, and other advocates to input into these new structures.
  • Some elements of HIV care, such as decisions on medications, guidance, and the service specification, must remain nationally organised to ensure a consistent standard of care, regardless of who is responsible for commissioning.
  • People living with HIV in the UK can attend any clinic, regardless of where they live. But it’s not clear how the proposed place-based system, which is designed to integrate care provision within each ICS, will work across ICS borders. NHS England has assured National AIDS Trust that “open access” care will be retained. We will also be working to make sure that integration of services works for people living with HIV who travel ‘out-of-area’ for parts of their care.
  • Over the years, there have been some stubborn healthcare problems the Department of Health and NHS England haven’t been able to resolve. These include how to share data effectively between clinicians without compromising patient confidentiality, and how to respond to the expanding need for mental health and social care services. Problems like these now land on ICSs’ doorsteps. If the Government is going to shift the problems it has been unable to resolve to the local level, it must also provide ICS with the resources necessary to tackle these issues. Still, it might have to concede that some problems require national level solutions.
  • The white paper leaves a glaring hole in terms of what public health and social care services should look like. To be fair, it recognises these issues require their own, more detailed, solutions but we’ve all been waiting a long time for progress in these areas. An integrated system can only be effective if its component parts are fit for purpose. The Government must come forward with plans for viable future public health and social care systems if it doesn’t want to derail its integration project before it has even started.

To provide effective care for people living with or at risk of HIV, all elements of the system must work together. The proposed changes have the potential to make it happen, but the devil is in the detail, and this is where the white paper comes up short.

We need to see long-term thinking for the health system with investment in prevention as well as the integration of quality services. The white paper is a start, but the Government’s next steps will determine whether it’s able to meet its responsibility of providing high-quality care for all people living with HIV in England while also achieving its goal of ending new HIV transmission by 2030.

Cheryl Gowar is Policy & Campaigns Manager at National AIDS Trust. Follow her on Twitter at @cherylgowar

Feb 24, 2021 By joe.lester