Some HIV experts are wondering not what our services will look like in the future but in some areas, whether there will be any HIV-specific services at all. Gus Cairns reports.
Cold and frosty, but with sunny prospects: the NHS White Paper
Early on, people in the HIV and disability activist movements, insisting that they were regarded as equal players in decision making about their health, adopted a slogan: “Nothing about us, without us”. In the White Paper that sets out the coalition government’s vision for the NHS in England,1 they use, as one of their guiding principles, a version of the same slogan (“No decision about me without me”).
It may therefore be a bit ironic that this document contains reforms so radical that they may mean the end of some HIV-specific services.
The NHS White Paper is not the only policy document that will affect the future of HIV services over the next half-decade. There is, of course, the government’s Spending Review (SR),2 which will make an 8.3% cut in government spending in real terms over the next four years and a 29% cut to departmental budgets.
Yet the NHS is specifically exempt from cuts, and the White Paper pledges that: “We will increase health spending in real terms in each year of this Parliament”. So why are these reforms likely to radically shake up HIV services?
Firstly, the cost of medicine rises faster than the cost of living. There are around 90,000 people living with HIV in the UK, and each year, around 7000 more are diagnosed. Add to this 8% increase, the increase in the proportion taking antiretrovirals due to treatment guideline changes and you have a projected increase of 11% in the HIV drugs budget alone. The health spending increase comes nowhere near compensating for this, and the government has made it clear that, while the NHS is exempt from cuts in the provision budget, it will still have to share the pain. Specifically, it demands £20 billion in efficiency savings by 2014 (out of an annual NHS budget of £105 billion),3 and a huge 45% cut in NHS management costs.
Secondly, not all HIV services are run by the NHS. Local authorities run social care, and from next year will take over local responsibility for public health – including HIV prevention – from the primary care trusts. Local government is expected to cut 28% from its budget, and that may mean paring everything but statutory social services to zero. The ring-fenced protection for the AIDS Support Grant,4 £30 million allocated to local authorities in proportion to their HIV-related social care needs, was abolished, just before the election, by the last government.
Thirdly, about 45% of people with HIV are unemployed5 and others on low incomes. Cuts in the benefit budget will happen too, to the tune of £18 billion over the next four years. This includes the replacement of Incapacity Benefit with a time-limited Employment Support Allowance, an across-the-board 10% reduction in Housing Benefit, including a cap on rents, and possible health assessments of everyone claiming Disability Living Allowance.
Finally, HIV used to be one of the ‘specialised services’, 35 disease areas which, because of their complexity and/or cost, were commissioned on a regional or national basis rather than by local primary care trusts. It was therefore not subject to variations between local trusts, and its regional management meant that it largely remained within the remit of clinics at large hospitals. No more: as of 2010, HIV has been removed from the list of specialised services.6
A central plank of the White Paper is to make consortia of GPs responsible for commissioning (funding) virtually all health provision in their local area. Although there remains a provision that very specialised and/or expensive services will be commissioned by an overseeing body called the NHS Commissioning Board, there is doubt amongst HIV service providers whether HIV these days is specialist enough, in an era where most people on treatment are stable, to warrant separate provision.
Once HIV is bundled into local services, many people predict that the GP consortia will impose cost reductions with a determination that has been lacking in the big hospitals, and we will see the end of consultant-delivered HIV care for the majority of patients.
Unsettled times ahead: the view of the Terrence Higgins Trust
Paul Ward, Deputy Chief Executive of the Terrence Higgins Trust (THT), does not mince his words when it comes to his predictions for HIV.
“I think services for people with HIV are going to go through the biggest single change since the start of the epidemic,” he says. “There is a good chance we will see significant reductions in voluntary sector provision and its almost total disappearance in some areas.”
In terms of medical care, he says, we are likely to see a big shift from HIV care in hospitals to HIV care in local health facilities, though not necessarily by GPs.
He acknowledges that there have been predictions that uncomplicated HIV treatment will become part of local, non-hospital-based health care for years, and it hasn’t really happened. “This time round, though, I think it’s different. There really is a lot less money to go around, and there will be a different set of commissioners in the driving seat.”
The consortia of GP practices that would commission services would, for a relatively specialist condition like HIV, need to be large and look after a whole region such as Yorkshire or the North West.
But, he warns, “Experience shows that, once you get GPs in charge, there will be a lot more emphasis on value for money.”
This doesn’t mean the HIV sector would have no say in how services were configured. As HTU Readers’ Panel member Robert James points out, GPs may decide that HIV is such a “messy and complicated” area, they will farm the whole process of commissioning out to a health consultancy – which could be a private firm but could equally be an organisation like THT.
Dr Mike Youle, an HIV specialist who has criticised substandard HIV care in the past, doesn’t necessarily think this is a bad thing. “The NHS is slow to use the possibilities of e-clinics, home delivery of drugs and all the things that free up time and allow concentration on real clinical services.”
And David Castelnovo, a specialist HIV nurse in Brighton, agrees. “We as NHS trusts have not been very good at managing our budgets…it’s only recently that we adopted home delivery, which saves £1000 per patient per year in VAT alone.”
Paul Ward predicts that the stable majority of people on HIV – the people who have no need to change treatment – may be increasingly managed by specialist nurses like David who are attached to one or more local clinics.
When it comes to social care, Paul predicts a shake-out of services “bigger than that in the late 1990s when many of the old drop-in centres closed.
“Local authorities are facing cuts of 35% to social services. They will have to cut provision to the bone, to only cater for the people to whom they have a clear statutory obligation: children, the elderly, and a few adults such as those with severe learning or other disabilities or mental illness. THT sees many, many people with high social care needs who, nonetheless, are not statutorily eligible for social care.”
He regrets the ending of the ringfence for the AIDS Support Grant but thinks that the scale of the funding cuts would have overshadowed any difference made by keeping it: “Even before it went, in the last few years it was getting hard to show that all of the money was getting to people with HIV.”
In response to the changes, THT is planning to increase the services it provides via the internet and over the phone, and predicts a lot of other organisations will have to do the same. “Organisations may not have paid staff to provide in-person services or, if they do, won’t necessarily have a building to do it from.”
LifePlus, THT’s new website (see below) is an example of this new kind of provision. A Department of Health kitemark is now available for health and social care information, and providers can apply for accreditation under it to certify the information they produce is reliable and up to date.
A separate NHS consultation on a proposed information strategy, covering everything from websites to patient records and health audits, is currently underway.
But not everyone uses the internet. African people in particular have reported that they prefer one-to-one, video or interactive services and that, if they do use the internet, they often do so in places where confidentiality is a problem. Paul Ward points out that despite this stated preference, a study from Homerton Hospital presented at the Vienna International AIDS Conference this year7 found that African women were avid readers of HIV information websites.
When it comes to prevention and public health, the situation is different in that the government, in shifting responsibility for public health from PCTs back to local authorities, has allocated new ringfenced money for its provision.
However Paul Ward is quite sure that prevention programmes and interventions will be more tightly controlled than before. This is because the other, central plank of the new NHS strategy is to rely on outcome, rather than process, measures. This means scrapping a lot of the Labour targets such as waiting-list times. In the case of HIV prevention, anything that doesn’t get local HIV and STI infection rates down will have a hard time justifying being funded.
Ward thinks that there is room for unfairness and discrimination in this new slimmed-down world, citing especially the new wave of people ageing with HIV (see The prescription for old age) who may have specific needs such as gay-friendly and HIV-aware care homes. He also believes that many people will suffer from the changes to welfare benefits.
“We need to recognise that there will be a big impact on people with HIV, and we will need to fight for their rights and help increase employment amongst people with HIV.”
Dark skies, but glimmers of sunshine: the view of the National AIDS Trust
Over at the National AIDS Trust, Policy Director Yusef Azad has a slightly different take on the prospects facing us.
He hopes that HIV may yet remain a specialist service commissioned by the NHS Commissioning Board and suggests that there is still everything to play for in terms of making the case that HIV commissioning needs specialist expertise.
“Our concern is not so much that drugs will not be paid for – they will. But GP consortia may not, for example, understand the importance of services such as psychological support for people with HIV.”
He adds that there is still no answer as to how open-access self-referral services like HIV and GUM clinics will fit with commissioning by GP consortia. Interestingly, two important open-access services – dentists and opticians – will be within the remit of the NHS Commissioning Board, not GPs. Could HIV be the same?
Even if the NHS Commissioning Board does commission HIV outpatient services, this does not preclude the greater involvement over time of GP practices in treatment and care of people with HIV, he adds. The proposal for greater patient choice of GP may allow for some practices to work in partnership with HIV clinics in provision of treatment and care.
Azad is encouraged that, although the AIDS Support Grant has gone, a letter from Eric Pickles, Secretary of State for Communities and Local Government, confirms there will continue to be a specific amount relating to HIV social care within the general ‘formula grant’ given to councils and that it will increase from £20.5 million in 2010-2011 to £36.2 million by 2014-15. This, he says, was a direct result of NAT’s campaign to retain a distinctly funded allocation for HIV social care in the Comprehensive Spending Review.
“This may not be ringfenced but it is an acknowledgement that the number of people with HIV is going to keep on growing and their social care needs will increase,” says Azad.
However, because it doesn’t have to go on HIV services, “a specific case in each local authority will need to be made to spend this money on HIV, and not something else more acceptable.”
He explains how the benefit system will change.
“For some time now any new applicant claiming medical inability to work has been placed on something called Employment Support Allowance (ESA) instead of Incapacity Benefit (IB), and people on IB are being ‘migrated’ over to ESA. The difference between the two benefits is that with ESA there is less emphasis on proving that people can’t work and more of a presumption that they will be able to again soon. People who qualify will only be able to access ESA for a maximum period of a year, unless they are severely disabled. After that they will almost always have to go on to regular Jobseeker’s Allowance and prove they are actively looking for a job, or stop receiving any employment-related benefit.
“This is just an arbitrary limit when it comes to a long-term condition like HIV,” he says. “A medical barrier to entering the workplace does not automatically disappear after a year, and we are maintaining that people should be treated on a case-by-case basis.”
There are a lot of problems with these face-to-face assessments (known as Work Capability Assessments) for people with HIV, which NAT has recently set out in its report Unseen Disability, Unmet Needs.8 It will be a challenge, Azad says, to ensure a fair assessment system for benefits in the context of massive cuts to the benefits budget.
In terms of prevention, he is concerned that handing public health back to local authorities will create an unhelpfully rigid distinction between prevention and treatment services. “A lot of HIV treatment has prevention implications,” he says.
However he welcomes the proposed ringfence within local authority budgets around public health: “This could be a positive development. There’s always been a tendency for clinical care to suck all the money out of prevention. People more often hammer on their doctor’s door because they’re in pain than because they’re worried about their eating or exercise habits.”
The new world of HIV service provision in going to be a tough one. “There will, whoever they are, be a new set of commissioners who will be asking very tough questions about the impact and effectiveness of everything and who won’t necessarily have any loyalty to the HIV sector.”
Besides, he adds, the wind of change is already upon us, and organisations are already falling by the wayside. Crusaid, for example, closed this year and its Hardship Fund is now administered by THT.
“There is a whole new range of players,” he says, “and we will need, to every one of them, to make the case for maintaining the standard of HIV treatment, as a public health issue.”
A blast of fresh air? How the cuts may help us
Much is still uncertain about the impact of the cuts. An alternative model doing the rounds in London is that, far from services being provided locally, HIV health care in the capital should be provided by six ‘super-clinics’ at the biggest teaching hospitals.
Which model you prefer probably depends on where you live, your state of health and whether you prefer convenience to expertise or vice versa and it’s far from clear what changes will occur in HIV services in the coming years. As we write, it is even uncertain as to whether the national HIV drugs budget will expand by the projected 11% rise in people needing them. We also don’t know yet who will deliver HIV prevention work in London next year. There is a feeling that much is yet to play for.
Some people we spoke to think that the impact of the cuts may be positive for a lot of people with HIV.
David Castelnovo says: “The forthcoming changes are not all doom and gloom. Some of the reforms are inevitable. Our social care needs have changed and with people affected by HIV mostly dying in their old age, shouldn’t social provision, with a few complex exceptions like the needs of newly arrived immigrants, be redirected toward the problems of getting old with HIV?”
He adds that he is “horrified” by the level of unemployment in people with HIV. “We should be doing much more to help people into employment, and it’s an area THT should be addressing with increased interest.”
Dr Mike Youle agrees: “All those who take the jump into work have, in my opinion, benefited hugely from it and this includes people with severe long-term HIV. It is vital we support this process and make their lives as easy in work as out.”
HTU will continue to cover the impact of changes in treatment, care, prevention and social care over the coming months. If you have experienced changes in services or other aspects of the cuts, email info@nam.org.uk with the subject heading ‘Information for HTU’.
Life Plus: a new service model
In response to the challenge of enabling an increasing number of people to manage HIV as a long-term condition, the Terrence Higgins Trust and people living with HIV have collaborated to create an innovative new service - the Life Plus project.
Life Plus, funded by the Elton John AIDS Foundation, and developed with the support of George House Trust (GHT) and NAM, will help people living with HIV to manage their health and their treatment using face-to-face, telephone and online support.
The new resource will include a web-based health and social care support system tailored to individual needs: the more people use the service, the more tailored to individual needs it can become. It will also provide an online space where people can privately and securely store information about their treatment - CD4 count, viral load and much more - enabling people to monitor their own health and take an active role in their care. People living with HIV will be able to submit questions which will be answered by accredited health trainers.
Forums will enable people living with HIV to build communities, and offer support to each other around all sorts of topics, from treatment and adherence to safer sex and disclosure. Online support and advice will also be available for those who feel they need further help.
The Life Plus project also provides a new face-to-face support service in areas with high rates of HIV prevalence; Brighton, Birmingham, Glasgow, Cardiff and Manchester (the latter with GHT). THT’s health trainers will encourage and support people to manage their condition on a one-to-one basis. They can meet people living with HIV at their clinic, a THT/GHT centre or even their home, or offer advice and support over the phone, or online.
Chris, from Aberdeen, has been HIV-positive since 1999 and helped develop the service: “I’ve been working with my health trainer for about a year now. Since then my view on living with HIV has totally changed; I feel more positive, confident, in control and aware of what’s happening. Before I was always on the fringes but now I go to seminars and conferences on HIV and am getting involved, and that’s something I wouldn’t have done before.”
Eileen Nixon, HIV nurse consultant and research fellow at the University of Brighton, is on the Life Plus project advisory group: “Part of the reason I wanted to get involved with this project is that I believe we can learn a lot from this and other long-term condition models.
“There are some great examples of people taking an active role in their HIV care, and health trainers can support patients to do this, especially at times of change, as when considering starting ARVs. For patients with other health conditions as well as HIV, some may find it useful to have additional support to manage multiple hospital appointments.
“What’s exciting about the Life Plus project is that the third sector and the NHS are working together to identify what services are needed and who provides them. Anything that helps people to engage in decisions about their health care is a positive step and, with HIV changing so much, really helpful.”
Caspar Thomson, NAM’s Executive Director, says: “We now have plenty of evidence that the more involved individuals are in their care and treatment, the better their health.
“To become involved in a meaningful way people need good quality, authoritative information that supports them at every step of their journey with HIV. People have different needs, learning levels, circumstances and backgrounds; so that information has to be delivered in as many different ways as possible, including online and face-to-face. The Life Plus project will extend the scope and reach of existing information in ways that have not, until now, been possible.”
- If you are living with HIV and want to share your experiences, test the new service or give feedback:
- Or if you are a health professional, work for an HIV charity or support people living with HIV and want to know how the Life Plus project will help to promote your service to people living with HIV:
Please contact Verity Glasgow at verity.glasgow@tht.org.uk
Update February 2011: the new website is now live at www.myhiv.org.uk.
References
- Department of Health. Equity and Excellence: Liberating the NHS. July 2010. See www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_117353
- See www.hm-treasury.gov.uk/spend_index.htm
- See The King’s Fund: Budget Briefing 2010. www.kingsfund.org.uk/document.rm?id=8613
- See National AIDS Trust The AIDS Support Grant: Making a Difference? July 2009.
- Ibrahim F et al. Social and economic hardship among people living with HIV in London. HIV Medicine 9:616–624, 2008.
- See www.yhscg.nhs.uk/specialised-services-national-definition-set-version-3.htm
- Mazanderani F and Anderson J The internet and patient expertise in the context of HIV. 18th International AIDS Conference, Vienna, abstract MOAD0206, 2010. The abstract and presentation are available on the conference website here: http://pag.aids2010.org/Session.aspx?s=201
- National AIDS Trust Unseen Disability, Unmet Needs. October 2010.