HIV Treatment

Mike Freer Excerpts

Wednesday 29th March 2017 Westminster Hall

[Mrs Anne Main (in the Chair)]

Before I call Mike Freer to move the motion, I want to say that our thoughts are with the victims of last Wednesday’s atrocities. I do not think that the House is pausing in its proceedings, but our thoughts are with them today.

[Mike Freer (Finchley and Golders Green) (Con)]

I beg to move,

That this House has considered the all-party parliamentary group report Impact of Health and Social Care Act on HIV treatment.

I associate myself with your comments, Mrs Main, which are exactly right, and it is a pleasure to serve under your chairmanship. I also put on the record my appreciation of the Minister and other colleagues, but especially the Minister, who has been extremely supportive of the all-party parliamentary group on HIV and AIDS and who has always been helpful when I have raised issues to do with HIV/AIDS. I am grateful, too, to other Members on what is a busy day, with other demands on their time. Their attendance at this debate is much appreciated.

Since 2015, when I was elected chair of the all-party parliamentary group on HIV and AIDS, our main objective has been to draw on evidence from clinicians, patients, HIV charities and research groups concerned about the potential impact of the Health and Social Care Act 2012 on HIV treatment in England. In December 2015, therefore, we started to collect written evidence so that we could investigate whether such concerns were based on reality.

Our inquiry took about a year to conclude. We heard from clinicians, local authorities, public health officials, people living with HIV, and the charity sector. We took both written and oral evidence. After a year of gathering evidence, it is fair to say that we concluded that fragmentation has occurred, creating a degree of uncertainty and presenting opportunities for aspects of HIV care to fall through the gaps between the commissioning bodies. I will outline that later.

The purpose of our report, “The HIV puzzle: Piecing together HIV care since the Health and Social Care Act”, was not to turn back the clock, but to reach out to the sector for evidence and recommendations so that we may make tangible improvements to the commissioning of HIV services. We need to work together to make such changes to ensure that people continue to maximise the benefits of the world-class treatment and clinical care service available in the UK.

I emphasise that the majority of the report recommendations focus on the need for clarity and accountability in all parts of the HIV care pathway, because the lack of clarity in the 2012 Act is what came into sharp focus. It was exemplified by the debate surrounding the provision of PrEP—pre-exposure prophylaxis—and the uncertain future of HIV support services. I and my APPG colleagues who advocate central funding for PrEP welcome NHS England’s announcement of a new PrEP trial to reach 10,000 people.

Our report concluded that the Health and Social Care Act increased fragmentation to many aspects of the care pathway, from prevention to long-term condition management. For example, fragmentation has created risks for HIV support services. The separation of sexual health and HIV is another example. There are new potential barriers to testing and prevention. Most importantly, there is confusion over the commissioning of new prevention techniques. I will highlight some of our key findings and offer suggestions as to how the APPG believes the report’s recommendations can help address them.

HIV support services—non-clinical services—have long been considered a vital part of the care pathway for people living with HIV. The British HIV Association, BHIVA, which is accredited by the National Institute for Health and Care Excellence, provides official guidance on HIV treatment and care. BHIVA states that the following are necessary for effective long-term condition management: peer support; support from other trained professionals; and information about HIV treatment, healthy living with HIV, diet and lifestyle, and optimisation of general health issues. People living with HIV also need support to access general health services, financial advice, and housing and employment support.

That view is endorsed by NHS England:

“The effectiveness of specialised HIV services depends on other elements of the HIV care pathway being in place and effectively coordinated”,

Those elements include:

“Third sector HIV care and support services for treatment adherence, peer support and self management…Social care, mental health and community services for rehabilitation, personal care or housing”.

Not everyone living with HIV requires support, and most will only need to use those services periodically, such as when they are newly diagnosed, experiencing employment issues, pregnant or considering disclosing their status to others, and if they are experiencing discrimination. The UK stigma survey identified that 28% of people diagnosed within the previous 12 months reported suicidal thoughts. Sadly, the suicide rate for HIV-positive men in the first year after diagnosis is more than five times higher than for men in the general population.

Similarly, while the side effects of treatment have improved in recent years, many people still have real difficulty in managing them, especially when starting medication or transferring regimens. People who are long-term diagnosed may experience ongoing and irreversible side effects of older HIV treatments, such as neuropathy and lipodystrophy. Most recently, there is emerging evidence on diabetes.

Support services in those instances not only ensure that people have access to a trained professional or volunteer at the point of crisis, but reduce the pressure on healthcare professionals. The National AIDS Trust reported that 50% of attendees at expert patient groups subsequently reported fewer GP visits. For an investment of £400 per attendee, the average net saving to the NHS for each patient with a long-term condition was £1,800. In addition, Positively UK reports that 88% of people reported that peer support has helped them to adhere better to their treatment plans.

Unfortunately, however, we have heard from the National AIDS Trust and other local support organisations that HIV support services are vulnerable under the 2012 Act, because commissioning responsibility has not been clearly defined. Therefore, the clearly mandated service provision has instead taken priority, in particular where there have been reductions to public health grants for local authorities. Last year, for example, HIV services in Berkshire and Oxfordshire were reduced by more than £100,000. In Berkshire, that equates to a loss of a third of the funding, which will directly affect 300 people living with HIV in Slough and Bracknell.

In Public Health England’s guidance to commissioners, “Making it work”, HIV support services are the only part of the care pathway left “to be determined locally”. That means that either the clinical commissioning group or the local authority can provide such services, but in a number of cases it appears that no one is commissioning services such as community-based HIV clinical nurse specialists.

The value of support services in other disease areas is well recognised. CCGs already commission cancer care, peer support for mental health services and the DESMOND —diabetes education and self-management for ongoing and newly diagnosed—programme for diabetes. The APPG has therefore recommended that the responsibility for providing HIV support services is met by NHS England and CCGs as part of the patient care pathway provided for long-term condition management.

Local authorities have a responsibility to provide public health and social care services, but the ambiguity in the 2012 Act and reduced funding mean that the responsibility has been deprioritised. Support services sit comfortably within the mandate that CCGs and NHS England already have to provide HIV treatment and care. Importantly, what we are asking is that the Department of Health reiterate the need for a mandated whole-treatment plan, from start to finish.

[Dr Daniel Poulter (Central Suffolk and North Ipswich) (Con)]

My hon. Friend is making some good points, and I commend him for bringing forward this important debate. Does he agree that one of the fundamental challenges thrown up by the Health and Social Care Act 2012 is the fragmentation of services? As a clinician, it is strange to me—I made this point when I was on the Health Committee—that sexual health services are now commissioned by local authorities and a lot of HIV diagnoses are first discovered by contact with sexual health services.

[Mike Freer]

My hon. Friend makes a good point. I will go on to identify what is almost a lottery or a roulette, where people can access testing only if the parts of the health service or social care services that they come into contact with know what to do. I will also comment on the problem that some services—particularly GP services—feel that they are under so much pressure that they do not always know how to refer people for testing. One of the implications of the rationalisation of genito-urinary medicine clinics—GUM clinics—is that people risk falling through the cracks. My hon. Friend makes a good point that because services are provided in a number of places by a number of parts of the health service and it is not clear who is responsible for doing what, there is a great danger that people will think, “Someone else is doing it,” or, “Someone else is paying for it,” and we end up with no one doing it or no one having the funds to do it.

Civil society groups have highlighted that, under the Health and Social Care Act, some HIV services have been separated from sexual health services, which seems to have had the unintended consequence of creating different commissioning responsibilities for different aspects of caring for people living with HIV. HIV clinical services are commissioned by NHS England. HIV clinics traditionally sit in or next to sexual health or GUM clinics. That is the logical place for them to be; it helps with referrals and the continuation of care. Most HIV diagnoses are picked up during routine sexual health check-ups.

For example, the team at the Marlborough clinic at the Royal Free hospital, which serves my constituency, offer HIV testing and treatment alongside sexual health advice, testing and treatment for sexually transmitted infections, and contraception services. Where an HIV-positive diagnosis is made, staff can quickly link the newly diagnosed person into care at the adjacent Ian Charleson day centre, almost by walking them from one part of the building to the next, to ensure that there is continuation of care and no gap between someone being diagnosed and referred. In every part of the health service, whatever the illness or condition, if there is a gap between diagnosis and referral to a specialist service, some patients simply do not turn up. The collocation of services improves the continuation of care. The threatened merging of GUM clinics, which might take them away from HIV clinics, is therefore a cause for concern. I fear that it will make fragmentation worse.

Although local authorities are entirely responsible for providing sexual health services, they are not responsible for the entire HIV care pathway. That has resulted in sexual health services being put out to tender without a plan for the HIV service. That disruption of care presents a real problem for keeping track of patients and ensuring that they remain in the care pathway.

[Dr Poulter]

One of the other practical problems that was not thought through very well in the run-up to 2012 is communication between services, which my hon. Friend rightly mentioned. IT systems in the NHS often do not talk to one another very well, and they certainly do not communicate well with local authority databases or those of private sector providers, which may store information about the same person. That is at the core of the problem, and I wonder whether he might look at that issue when he makes recommendations to the Minister in the future.

[Mike Freer]

My hon. Friend makes a good point. The APPG is currently considering an informal report about the future of social care. Because HIV is no longer a death sentence but a manageable condition, people are living to ages by which they expected to be dead, or by which the health service expected them to be dead. We have early indications that the social care sector simply is not geared up for handling admissions or placements of HIV-positive people into care homes and nursing homes. Some care workers are simply uneducated about how to provide support. My hon. Friend is right: as people are moved into private placements, whether they are funded by the local authority or self-funded, we will have the problem of a lack of joined-up support—not just in IT, but between social care, which is a local authority responsibility, and care for health conditions, which is the responsibility of HIV clinics with NHS support. He makes a very good point.

The disruption caused by dislocating HIV and sexual health clinics presents a real problem in keeping track of patients. As I said, collocation ensures that patients stay in the care pathway. Integrated HIV and sexual health services support young people living with HIV as they transition from paediatric care into adult services. Navigating adult HIV services for the first time can be challenging for young people. Including those services alongside sexual health services ensures that they have a one-stop shop for their HIV care and other tools for ensuring good sexual health.

The reality is that, in many cases, sexual health has become fragmented from HIV. Sexual health is the more profitable aspect of tenders, so some providers have purchased only the sexual health service, leaving no provision for HIV. In oral evidence to the APPG last year, the British Association for Sexual Health and HIV—BASHH—said that it believed that that had been a genuine oversight in the tendering process. Its president said:

“I don’t think the connection of what would happen if, particularly in a small service, the sexual health element of the tender was won by another provider. I don’t think anybody thought what would happen to the HIV service that was there. I think they thought it would just continue to be provided…and of course that may well be the case if it’s a large HIV unit, but in many cases it isn’t and it’s financially not viable, and that’s where the problem lies”.

Others report that when sexual health tenders were purchased without the HIV service, HIV clinics were left understaffed and with little certainty about the commissioning of the service. That means that people living with HIV have been required to access services elsewhere, which has led to small but significant numbers being lost to care. In its written evidence to the APPG’s inquiry, BASHH also noted:

“In a sexual health service that went out to tender a few years ago the contract was awarded to a community NHS provider. The outreach HIV clinic that had been well established was not sustainable and the service was discontinued. The majority of the service users transferred their care to other HIV providers some miles away but 9% were presumed to have disengaged in care.”

With that in mind, the APPG’s report, “The HIV puzzle”, recommends co-commissioning of HIV and sexual health services by local authorities and NHS England. Those two commissioning bodies should work collaboratively to ensure that a service assessment is in place so that the new provider, whoever it is, has a responsibility to ensure that the HIV service is maintained and not lost. The Department of Health needs to ensure that there is mandatory guidance for sexual health service bidders to undertake risk assessments and produce action plans detailing how the HIV treatment service will be transitioned and implemented.

The separation of HIV clinics from sexual health clinics is an unintended consequence of the Health and Social Care Act that needs to be addressed. The split of responsibility for different aspects of HIV care between local authorities and NHS England is leading to confusion in commissioning, and as I mentioned, early indications are that a small but significant proportion of HIV patients have fallen out of the care pathway as a result. Previously, sexual health services were all commissioned by primary care trusts and the separation of HIV services from sexual health services was unheard of.

The inquiry also identified that there remains no whole service specification for HIV and sexual health, which we believe is causing health professionals to deprioritise the service. The service specifications that do exist relate to either sexual health or HIV services through “Integrated sexual health services: national service specification” and the NHS England service specification for adult HIV services, and it is the same for paediatric HIV. Those guidelines are useful, but what is really lacking is a comprehensive service specification for HIV and sexual health that encompasses all aspects of the HIV care pathway.

That is why we recommended that the Government develop a whole service specification for HIV and sexual health, bringing together the various existing strands of clinical guidance to ensure clear and consistent advice is available to all local authorities, CCGs and NHS England. A clear service specification for HIV and sexual health would mean that there is a one-stop shop for local authorities or CCGs, which would help to remove the sense of fragmentation experienced by both patients and health professionals.

We recognise that public health is a devolved issue, but the Secretary of State must ensure that local authorities have enough guidance to ensure that there is a minimum service requirement that they must provide. At the moment, the 2012 Act does not provide enough clarity or accountability to any one commissioning body. The nature of HIV as an infectious disease means that HIV services do not start at the point of diagnosis.

Let me turn to testing and prevention, which are a critical part of encouraging safe sex. The APPG is extremely pleased with the Government’s recent announcement that relationships and sexuality education will be made compulsory in all secondary schools. Properly informed and sensitively taught, that will go a long way to ensuring that young people are able to make informed decisions about safe sex and preventing the transmission of sexually transmitted infections and HIV.

None the less, testing and prevention are subject to similar fragmentation of commissioning responsibility, so confusion over commissioning responsibilities remains. As an example, HIV testing can be paid for by any of three commissioning arms—local authorities, NHS England and CCGs—depending on the setting and context in which the test is offered. HIV testing—including community outreach—for most-affected groups and routine population screening in areas of high prevalence is the responsibility of local authorities. HIV testing clinically indicated in a hospital—and termination of pregnancy services—is paid for by CCGs. Testing and treatment for STIs, including HIV testing, provided in general practice when clinically indicated or requested by individual patients, is covered by NHS England as an essential service under the GP contract. Different settings, different funding, total confusion.

In short, if someone is offered an HIV test by a hospital doctor because they arrive in A&E with shingles, it is paid for by the CCG. If they are offered the same test for the same reason by their GP, it is paid for by the NHS primary services contract. If they are offered a test by the same GP simply because they live in an area of high prevalence, as NICE recommends, it is paid for by local authority.

The evidence for prevention and early diagnosis is overwhelming. People living with HIV can expect a near-normal lifespan if they are diagnosed early, but people diagnosed late continue to have a tenfold increased risk of death in the year following diagnosis. NICE also estimates that the costs of HIV care remain 50% higher for each year after diagnosis if the diagnosis is late. Likewise, preventing onward transmission is crucial not only for individual and public health but in terms of the sizeable lifetime costs of treatment. In 2011, PHE estimated that each infection prevented would save between £280,000 and £360,000 in lifetime treatment costs. NICE estimates that, if national testing guidance is implemented fully, 3,500 cases of onward transmission could be prevented in the next five years, saving the NHS more than £18 million a year in treatment costs.

I mentioned that GPs say they are under time pressure, and for a number of health issues that is widely reported as a barrier to proper intervention. The availability of education for GPs on offering HIV tests remains a problem. GPs feel they do not have enough information about the most appropriate time at which to intervene on HIV testing. As the Royal College of General Practitioners notes,

“There is...the issue of effective implementation—including training and support for practices to adopt these schemes...GPs and our teams are already under immense resource and workforce pressures making it incredibly difficult to implement any new programme”.

Many in primary care will therefore refer patients to GUM services for testing. However, that has the potential to entrench existing inequalities in late diagnosis rates, given that high-risk communities—particularly black African communities—are far less likely to access sexual health clinics and much more likely to access primary care.

Although healthcare professionals’ knowledge of when to offer an HIV test is not directly related to the Health and Social Care Act, the expectations from patients and the NHS England to mandate commission testing based on clinical indicators mean that educating healthcare professionals on the subject in line with NICE public health guidance must be a priority. The APPG has also called for protection of local authority public health grants from further funding reductions, in line with the Government’s commitment to ring-fencing the NHS budget. I would be grateful if the Minister could outline what plans she has to ensure that public health investment is not lost under further changes to local authority funding.

Finally, arguments over commissioning responsibilities have led to a stalemate on the introduction of innovation in HIV prevention. In 2015, studies from the UK, France and the US reported that, when taken regularly, PrEP can reduce the risk of HIV transmission by up to 86%. As the National AIDS Trust notes:

“PrEP is exciting, new, and currently, unique. It is not a vaccine, although it has a similar impact. We can draw comparisons to statins, in terms of preventing illness, or contraception, in terms of preventing unwanted consequences of sex. But actually, there is nothing quite like it. It is the definition of healthcare innovation.”

I do not wish to repeat the arguments made for and against the centralised commissioning of PrEP, but it does serve as an important case study in highlighting how the fragmentation outlined already risks HIV services that are focused on both lifelong condition management and preventing onward transmission.

As I mentioned at the beginning of my comments, I am enormously grateful to the Minister and NHS England for the announcement of an expanded clinical trial phase, including at least 10,000 participants, which will be launched early in 2017-18. I hope she will be able to update us on that trial in her response. I thank everyone who participated in the inquiry, particularly those who travelled across the country to attend our oral evidence sessions, and all the members of the APPG who took enormous time out of their diaries to support the inquiry.

--- Later in debate ---

[Nicola Blackwood]

The whole point of developing a much more systematic process and having a commissioning programme that does not allow the fragmentation of services, but instead is much more integrated, is that it will take into account more ageing people living with HIV. We believe that that will deal with the issue.

The hon. Gentleman also asked how we will tackle the issue of undiagnosed people living with HIV in the community. We believe that the strategy of increasing education and introducing compulsory sex and relationships education will be part of that, as will improving our performance, testing and early diagnosis. The work being done through the innovation fund is a key plank of that. Having clear specifications in commissioning guidelines so that we have coherent services for all who seek them is the strategy. We think that is a coherent response.

[Mike Freer]

Could the Minister write to hon. Members to clarify what will happen to those who are currently on the PROUD trial? What will happen while there is a gap between the drug stopping and the new trial starting? That would be appreciated.

--- Later in debate ---

[Mike Freer]

I thank right hon. and hon. Members for their time this afternoon. This has been a constructive debate, and I thank the Minister specifically for the commitments on extending the ring fence, for recognising that work needs to be done on the commissioning model and with regard to the work that PHE will be doing on a new action plan to support the pilots in addressing fragmentation and specification. Those announcements were all very welcome.

We have come a long way from HIV/AIDS being a death sentence. It is now a manageable condition. That is largely to do with drug breakthroughs but, importantly, it has been delivered through a co-ordinated response both from Public Health England and the NHS. I hope that this debate will help to avoid undoing the progress that we have made.

Question put and agreed to.

Resolved,

That this House has considered the all-party parliamentary group report Impact of Health and Social Care Act on HIV treatment.