HIV Treatment

Anne Main 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.