Deborah Gold: The future of HIV services

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Deborah Gold, Chief Executive of the National AIDS Trust, discusses progress made by HIV services and how to ensure this progress continues by building partnerships between services.

This presentation was recorded at our conference on The future of HIV services in England on 25 April 2017.

Transcript

Hi everyone. I just wanted to start by thanking The King’s Fund for inviting me to speak, their really careful and thoughtful work in understanding and drawing attention to the challenges that we share working together to make real progress, stopping the further growth of the epidemic and enabling people living with HIV to live healthy and happy lives, but before I talk about those challenges and how we can kind of encourage partnership to meet them, which is what I was asked to speak about by the King’s Fund, I wanted to reflect on what we do have and I don’t want you to think that I am either naïve or complacent, I do understand the urgency of the problems, but I think sometimes when we’re looking at the problems it’s very easy to forget the successes and we hear all the time about the world class care and health outcomes for people living with HIV in England and those results are not  a coincidence. 

They exist because of people living with HIV, many of whom are engaged experts in their own care and who want to and when given a chance will work to improve the system for everyone, for its faults an amazing NHS with free treatment in England for everyone no matter where they are from, enormously impressive detailed data on HIV offering the evidence we need to make the best decisions possible, fantastic medication that means the lives of people living with HIV are exponentially improved, incredible passionate clinicians like Chloe who are committed to working in partnership with patients, commissioners and the voluntary sector, commissioners in the NHS and in local authorities who really care deeply about getting the best for people living with HIV and who are working in an extremely tough climate to try to squeeze as much as they can out of every penny and a vibrant community of activists and voluntary sector that is at the vanguard of support for people living with HIV and which has been a huge part of our story of success and which speaks up and speaks out to continually protect and improve what we have and PrEP was a great recent example of that.

So we have much that we need to protect in this changing world, but my challenge to you is to begin a conversation about how we protect what we need to keep without becoming protectionist and that means having honest and sometimes painful conversations about what we need to keep and what needs to change, and HIV has always been in the vanguard of what good health care and good partnership looks like and that means we’ve developed the kind of services and approaches which now perhaps using different terminology are recognised as being at the forefront of what the health service needs to successfully manage long term conditions. This came up on the panel earlier on this afternoon.  When we hear talk of coproduction think about GIPA, when we talk about self-management think about peer support, treatment information, support groups.  We have so much to teach others with long term conditions about what good looks like and how to build and maintain partnerships between patients, patient groups and clinicians.  But we also have so much to learn.  The truth is HIV is changing. 

Far too many people are still diagnosed late and have worse life chances as a result. Stigma is an unjust burden on the lives of people living with HIV.  HIV is different because it’s communicable.  All of this is true and all of this remains crucial to understanding and responding to the epidemic but also late diagnosis is reducing.  People living with HIV are doing better and living much, much longer and that’s great news that we should celebrate and if the face of HIV is changing we have to be willing to change ourselves.

So first let’s stop fearing the idea of HIV as a long-term condition. Instead of fearing being lost within the NHS’s long term condition management agenda we should be knocking down their doors asking in that angry passionate way that HIV does best, what about us?  It’s no okay that in all the work on long term conditions HIV doesn’t get a mention.  It’s not okay that we are not front and centre of conversations about how to respond best to long term conditions in the NHS.  It’s not okay that we are losing out on learning what we could get from other long term conditions that we have so much in common with and which so many people living with HIV and other comorbidities also have and as they grow older may yet get.  It’s not okay that primary care often responds poorly to HIV but the solution cannot be to walk away from primary care it has to be to fix it.  It must surely be possible to have an overall approach to long term conditions in the health service that develops models which meet the needs of a wide variety of conditions but which also responds to the particular needs of each condition including in the case of HIV stigma and lack of knowledge, but to make that happen we need to be in the room and we’re not being invited so we need to invite ourselves. 

We need to be saying it’s different but that doesn’t make it less urgent, we need to be saying look at everything we’ve achieved through partnership, we didn’t get here to the best of times as Jane Shepherd said this morning by accident we did it together, but we also have to hear Jane’s message about it’s simultaneously being the worst of times. If we embrace what we can gain from rethinking HIV we need urgently to work out what comes next and then to put that in place before we lose what we have now because when that fails, as it has already in some areas, the consequences are disastrous for people living with HIV and we’ve seen that in areas that have completely lost their HIV support services.  If the fragile ecology of activism and third sector work on HIV prevention and support disappears we will lose one of the cogs that makes the HIV machine work and we risk losing our good work on adherence and resulting untransmittability as a result and further we lose risking our sense check about how these changes are affecting people living with HIV. 

So where sexual health services are tendered without thinking about collocated HIV services we risk losing the HIV service and losing the expertise and coordination that went with it. We need to work together to prevent this pattern from getting worse and to protect what needs protecting without being protectionist about changing and developing to future proof and we need to do that in a context of less money and a lack of political support and profile.  Political attention wanders but we can’t allow our attention to and to do that we need to rebuild trust and working in partnership takes honesty and effort.  The system we’re working in mitigates against that.  We know it’s fragmented, we know the rules about procurement and financial pressures mean that local authorities sometimes feel constrained, we know that we haven’t always shown ourselves best able to take advantage of new amazing opportunities like PrEP, but we also know that in places it does work and look at the great work in Brighton that’s reflected in the report.  We can make that happen elsewhere and we have to make that happen and we need to seize the opportunities when they present themselves and unite around them.

The King’s Fund report gives us the credibility of an independent voice echoing what we all know to be the truth about the difficulties and the frankly inconvenient general election is an opportunity for us to make some noise about HIV and push it up the political agenda, and I’d say look at us all in the room today, it’s in all of our interests to get this right. Everyone here has a part to play.  We’ve heard today about the need for national leadership particularly in insisting that stigma has no part in the NHS and taking action to eradicate it.  We need it to remove some of the barriers that prevent local authorities and the NHS from working together as partners and we need NHS England and PHE to move on making PrEP a reality and not just a promise, we need local commissioners and local providers to work together to agree a shared set of outcomes for people living with HIV and to agree what part they each have to play and for that to work everyone locally needs to be in the room, the CCGs, the local authority, the HIV consultant, the local PHE, third sector providers and of course people living with HIV.

The King’s Fund there’s a challenge of you too in using your knowledge and connections to help us make that work. NAT is the sector’s policy voice, we’ll continue to play our part in bringing people together when we can using the evidence and speaking truth to power, but first we all need to take a breath from the exhaustion of managing the changes, managing the cuts and remember that we all are actually even if it doesn’t feel like it on the same side and when we’ve done that we need to get back on the horse and do what HIV has always done best make it work.

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