HIV Treatment

Thangam Debbonaire Excerpts

Wednesday 29th March 2017 Westminster Hall

[Thangam Debbonaire (Bristol West) (Lab)]

I, too, wish to add my thanks to the hon. Member for Finchley and Golders Green (Mike Freer). Does my hon. Friend agree that having such a confusing and complex mix of commissioners and authors of standards for prescribing does not help to establish the consistent commissioning of drugs such as PrEP, which he has mentioned and which would help so many people not only in his own constituency, but in Bristol West?

[Peter Kyle]

Bristol and Brighton share many of the same characteristics in terms of demography and the numbers of people living with the long-term condition of HIV/AIDS. I agree with my hon. Friend wholeheartedly. The hon. Member for Finchley and Golders Green made the point very well about the split that was created in the Health and Social Care Act. It is having an impact on communities and I hope Ministers will finally realise that that needs to be prioritised.

In the work I have been doing with the people who deliver frontline services, I have learnt that the people who live with HIV/AIDS often have complex needs. The landscape for provision is also complex and moves from prevention to treatment. As my right hon. Friend the Member for Exeter mentioned, people are living into old age with HIV—that is not entirely new, but it is a fairly recent development. We should celebrate the fact that people now live into old age with HIV, but it presents us and our health service with very complex challenges.

I too have met people living into their 70s and 80s with HIV, who, when they were first diagnosed pre-1996, were given just weeks to live. There is an additional challenge for such people, as hinted at by my right hon. Friend. Many of those people are not only vulnerable because of the comorbidities and complex health challenges that they may have, both physical and emotional, but many of them spent all of their money when they thought they had a very short time to live, so they are additionally vulnerable because of their financial position. That means those individuals need the holistic care that they deserve.

The hon. Member for Finchley and Golders Green spoke well about the split created by the Health and Social Care Act 2012. I have seen its direct impact on support for people living with HIV. Some people are failing to get the comprehensive care that they need. That is leading, first, to individuals with complex needs not getting the comprehensive care they need, and, secondly, to providers of comprehensive care not getting the funding they need to provide the services. That is causing a terrible ruction in the provider landscape for HIV. Specifically with regard to Brighton and Hove, I am referring to the Sussex Beacon—I shall talk more about that in case the Minister is not aware of its fantastic work.

First, it is important to describe the general health landscape in the city of Brighton and Hove, which is in crisis. We have a hospital, a clinical commissioning group and an ambulance trust in special measures, as well as patient transport services whose privatisation was botched, and which were then renationalised, all within six months. On top of it all seven GP surgeries have closed in the past 12 months. The service is comprehensively in crisis. However, there is one jewel in the crown—the Sussex Beacon, which was established as a hospice in 1992, to provide end-of-life care for people who were dying because of HIV and AIDS. It has flourished and evolved as the needs of the client group have changed and evolved over time. It is a remarkable organisation, providing preventive, outpatient and inpatient services, and more than 2,000 bed nights a year.

Last year the Care Quality Commission said that the Sussex Beacon is outstanding. It is one of the true beacons of health in the community, and I am proud that it exists to provide comprehensive, holistic and tailored care for individuals living with HIV. It is incredibly important to the community. Because of the split, however, no one agency is taking overall responsibility for funding the Sussex Beacon any more—not the local authority, and not any of the funding agencies designated to do so by central Government. As a result, its statutory funding has fallen by £400,000 a year. That funding gap is bringing an extraordinary organisation to its knees.

In Brighton and Hove politics there is a rainbow coalition. The three MPs are each from different parties, but last year we united in writing, along with the leader of the council, to the Health Secretary, to point out how extraordinary the work of the Sussex Beacon is, and what the dangers are. We pointed out what would happen if all its client group—people with extremely complex needs who were used to and are deserving of specialist care for the special challenges they face—were to be transferred from somewhere rated outstanding to somewhere in special measures, such as a hospital struggling to cope with the patients it has at the moment. Before the general election, the Health Secretary took time to come to Brighton and visit the Sussex Beacon for a photoshoot, as did the Prime Minister when she was Home Secretary on another occasion. Sadly, neither had time to respond to the letter about the dangers that the service will face in future. It was passed on to another agency in the Department of Health for a response.

Perhaps people felt that we were crying wolf, but we were not. The trustees of the Sussex Beacon have issued a warning that they will start to shut services from June this year unless the funding gap is closed. Staff have been put on notice of redundancy. We are in the last chance saloon for that fantastic organisation, which is celebrated beyond Brighton for the services it provides. I urge Ministers to consider the specific challenges it faces. The Minister will know what an achievement it is in today’s health environment to get an outstanding rating for something so complex, meeting such complex needs. Because of the nature of the debate, she will know that the people who use the services count on them in a heartfelt, emotional and dependent way. It is an extraordinary service and I urge her to look directly at the challenge and see what the Government can do. Once the service is lost it will be gone forever, and will not be coming back.

I labour the point for two reasons: because I am a Member of Parliament for the area that the Sussex Beacon serves and one of its patrons, but also because it speaks to the challenges that comprehensive providers face in an environment in which funding has become very specialised and very narrow. Comprehensive providers are struggling to find their feet in the new environment. What is happening to the Sussex Beacon is relevant to the broader challenges faced by the sector, in the broader health environment.

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[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is a pleasure to serve under your chairmanship, Mrs Main. I thank the hon. Member for Finchley and Golders Green (Mike Freer) for his excellent chairmanship of the all-party parliamentary group on HIV and AIDS, for securing this important debate and for his comprehensive opening speech. It was a tour de force.

I also thank the other hon. Members who have contributed to the debate. I thank the hon. Members for Strangford (Jim Shannon) and for Linlithgow and East Falkirk (Martyn Day), my right hon. Friend the Member for Exeter (Mr Bradshaw) and my hon. Friends the Members for Hove (Peter Kyle) and for Bristol West (Thangam Debbonaire) for their excellent and knowledgeable speeches and interventions. They will all have given the Minister much to think about.

We have come a long way since the height of the HIV/AIDS epidemic of the 1980s, but that does not mean that we should be complacent in our approach to the disease now. Across the UK, an estimated 101,200 people were living with HIV by the end of 2015; 87% of them had a diagnosis, and 96% of those diagnosed were accessing treatment. Although they are a minority of people in the wider population, they are a significant minority that we cannot let down when it comes to their care and treatment.

The number of people receiving HIV care in 2015 in England was just over 81,000. That is a 73% increase in the number of people accessing HIV care since 2006. In part, that is welcome, as it means that more people are accessing care that can improve their lives, but it also provides us with reasons to ensure the future quality of care provided, and that is the crux of why we are here today to debate this issue.

As the APPG highlighted, it is understood that since the passing and implementation of the Health and Social Care Act 2012, there have been growing complications with the commissioning and provision of HIV services across the healthcare system. In the rest of my contribution, I will touch on the Health and Social Care Act’s impact on HIV services, but I will also expand into other areas, such as the cuts to public health budgets and the worrying trend of decommissioning of HIV services, and finally I will touch on issues regarding PrEP.

Since the passing of the Health and Social Care Act, there has been a significant fragmentation of our NHS and wider health services. During the passage of the Act, Opposition Members felt that it was an unnecessary top-down reorganisation. The case of HIV services proves exactly how that fragmentation is causing consequences for the future of vital services. The creation of CCGs and the devolution of public health to local authorities have fragmented HIV services across various bodies, with no coherent commissioning and oversight. Currently, services are failing to maintain the standard that patients expect. That is down to commissioning responsibility not being clearly defined under the Health and Social Care Act. Although the coalition Government argued that the Act would ensure the streamlining of services, the opposite has clearly been the case for HIV services.

I therefore want to push the Minister on what she is doing to look into the APPG’s recommendations, especially about joint commissioning for support services by NHS England and CCGs, along with co-commissioning of HIV and sexual health services by local authorities and NHS England. Another issue that the Minister must look at—I raise this repeatedly with her—is public health funding. The cuts to services further exacerbate the problems that HIV services face because of commissioning responsibilities being unclear, which is pushing services to walk away from their responsibilities.

I know that the Minister will reference the funding going into regular HIV testing and the promotion of safe sex, along with the HIV innovation fund, but the impact on funding cannot be ignored. Last week, the National AIDS Trust published a report showing that in England, there has been a 28% decrease in the expenditure between 2015-16 and 2016-17. That is on top of the cuts to HIV support services, or decommissioning of said services, in Lambeth, Southwark, Oxfordshire, Portsmouth and Bexley. Although public health budgets are only one part of the funding streams for HIV support, treatment and care, they are nevertheless an important part of the pathway, as cuts to sexual health services more broadly are detrimental to HIV care. The £200 million in-year cut and 3.9% cut year on year will only have a negative impact on the future of all sexual health services, including those for HIV. The Minister must seriously address that false economy, or risk seeing a public health crisis that could easily have been avoided.

[Thangam Debbonaire]

I thank my hon. Friend for the excellent speech that she is making. I want to add my support for what she has just said, and perhaps go a bit further. Does she agree that the Minister needs to address the fact that the failure to address preventive services will only store up costs and problems further down the line, and that when there are cuts to public health grants, those services need to be ring-fenced or protected in some other way so that we are not storing up problems for the future?

[Mrs Hodgson]

I thank my hon. Friend for that helpful intervention. I agree with her absolutely. The whole point of preventive services—HIV and sexual health services are preventive—is to save money, and lives, further down the line. We regularly debate preventive measures for other health issues with the Minister in this Chamber.

There is still a question mark over the future of HIV services, not only because of the cuts that we are seeing now, but because the future of public health budgets after 2018 is not guaranteed. There are also issues with the devolution to local authorities of business rates, which will be used to fund public health spending. The Government have still not published details of how they aim to ensure that public health will continue to be prioritised when that comes into effect. I hope that the Minister will be able to offer clarity today.

PrEP is a highly effective way of protecting someone who does not have HIV from contracting it. As the UK PROUD study showed, it was 86% effective in preventing HIV transmission and, if taken correctly, it has closer to a 100% success rate. That is why it is important that this drug treatment is supported as much as possible. While the announcement on the feasibility study is welcome, questions remain that the Minister must answer. Nearly four months since the trial was announced, we are still none the wiser as to when it will begin, other than that it will begin early in the 2017-18 financial year. I welcome that in her letter to the APPG yesterday the Minister said that the trial would begin in the summer, but I hope she will offer further clarity on when we will know more. There remains an issue with the drug Truvada, which is used in PrEP. For the trial to reach the 10,000 people that it plans to, a generic version of Truvada will need to be used. I am interested to know what conversations the Minister has had with Gilead, and how co-operative it has been to ensure the success of the trial.

Finally, I want to ask the Minister about the concerns that many PROUD participants will run out of their supply of PrEP this week, and that between 350 and 4,000 individuals at the highest risk of HIV will run out of supplies. That is a matter of urgency, and the Minister must address it as a matter of priority. We cannot allow the people who take this drug treatment to be put at risk. Therefore, I hope the Minister will go away today and look at the matter immediately.

These issues are highly important to many people who live with HIV or within those communities where infection rates are more common than in others, as we heard from my hon. Friends the Members for Hove and for Bristol West. I was shocked and surprised to hear that there is four times the normal rate of those people in the community of my hon. Friend the Member for Hove. I am well aware why he is here today to speak for his constituents.

The Government’s mismanaged approach to the NHS’s structures and to wider health services is seeing services fall through the gaps and people’s lives affected, which is exacerbated by short-sighted cuts. It is important that we recognise the work that has already gone into addressing HIV in our society, but accept that we still have a long way to go. We cannot squander these opportunities, as we could see yet another public health crisis due to complacency and failure to step up and address this issue. I hope the Minister has listened carefully to all the contributions to the debate and the seriousness of it, and will go away and do the right thing by the tens of thousands of people living with HIV or at those risk of contracting it, and support them. They should not be let down.

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[Thangam Debbonaire]

I am sorry to interrupt the Minister. I think she mentioned a minute ago something about protecting public health funding for two years until the change to business rates. I am so sorry, but I missed that point. Could she clarify it? Does she mean that this is a new announcement of new protections?

[Nicola Blackwood]

The public health ring fence will remain in place until 2019.

We also recognise, as recommendation 1 makes clear, that HIV support services are an important part of the overall care that people diagnosed with HIV receive to support their health and wellbeing. I have heard hon. Members’ concerns today about such services being decommissioned because of budget pressures. We are increasing our focus on supporting and improving place-based commissioning, and will work to provide the right opportunities for all commissioners and providers involved in a care pathway to work together to secure the right service response for the needs of the local population, taking into account each partner’s responsibilities.

In line with a number of the recommendations, we also need to ensure that we make the most effective and efficient use of the resources available. We are already seeing some really effective examples of that in the Public Health England HIV innovation fund, which supports voluntary sector-led projects across the country that are focusing, as my hon. Friend the Member for Finchley and Golders Green knows only too well, on HIV prevention and testing. That includes the OutREACH project in Cumbria, which is using community pharmacists to provide HIV testing in a rural area with very high rates of late HIV diagnosis, and the MESMAC project in Yorkshire, which is providing HIV awareness training and testing at a hostel housing migrants who are claiming refugee status in the UK. We are also encouraging innovations such as home testing. Our aim this year is to see 50,000 tests for HIV carried out at home. They are already starting to make a difference. The introduction of compulsory relationships and sexuality education will, as my hon. Friend says, have an important role to play in prevention.

I was very sorry to hear the comments made by the hon. Member for Hove (Peter Kyle) about the Sussex Beacon. I am sure that, given his account of the clear local need and the quality of the service, he is holding local commissioners to account for their decision making. I am afraid that my recollection is that I had responded to him on that matter, and not an arm’s-length body. I am very sorry if there has been confusion, but I am happy to continue the discussion following this debate, so that we can clear it up and ensure that we make progress on it. I would not like him to think that we do not take it very seriously indeed.

As we all know, delivering high-quality HIV services is about not just funding, but getting the commissioning right. As the report highlights, a lot of work still needs to be done to ensure that the commissioning landscape for the services supports effective collaboration and co-operation, so that we can continue to see improvements in these and other outcomes. That is exactly why Public Health England commissioned a sexual health commissioning survey, which very much supports the findings of both the Health Committee and APPG reports.

I recognise that commissioning sexual health and HIV services is complex, given the range of services and the different population needs that are covered under the broad umbrella of sexual and reproductive health and HIV. We are very alive to and are working to address the risk of fragmentation damaging the progress that we have made, so I am particularly pleased to announce that, shortly, Public Health England will launch an action plan to support commissioners and ensure that they can provide the sexual health and HIV services that their populations need.

As its first priority, Public Health England will look for ways in which to reduce the fragmentation of commissioning and address the barriers that stop effective collaboration and co-operation between commissioners. That will include encouraging the development of a model of lead integrated commissioning in each locality, including developing models for out-of-area tariffs and other issues that can slow down contracts and increase costs. PHE will also identify system leaders across the country to lead local sexual health, reproductive health and HIV commissioning in an agreed locality and form a national network of commissioning leads to promote the effective national development of commissioning.

To test out how that might work in practice, PHE will pilot local delivery models working with local authorities and CCGs to help to build on effective models of commissioning. We will announce the names of the pilot sites shortly—the work is still in the early stages of implementation—but I take this opportunity to urge any areas that are interested in working with us to get in touch with PHE and to take part in developing the work as it takes shape.