HIV Treatment

Debate between Thangam Debbonaire and Peter Kyle

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.