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Overhauling health: NHS reform, HIV and patient power

Gus Cairns
Published: 01 April 2012

The HTU guide to the NHS reforms, how they’ll affect you and how you can make the most of them. By Gus Cairns.

On 22 March, the government finally had its NHS reform bill passed by parliament.

This wholesale reshaping of the National Health Service (NHS) in England has scarcely left the front pages in the last two years, and the effect on HIV services took centre stage recently at prime minister’s questions.1 But what’s actually going to happen is as clear as mud to most of us.

HTU interviewed five people with a better grasp than most of the NHS reforms and their implications for HIV. They were Francis Kaikumba, Chief Executive Officer of the African Health Policy Network; Yusef Azad, Director of Policy & Campaigns for the National AIDS Trust; Lisa Power, Policy Director of the Terrence Higgins Trust (THT); Jane Anderson, Chair of the British HIV Association (BHIVA); and Claire Foreman, the Lead Commissioner for HIV in the London Specialised Commissioning Group.

The answers below are a consensus on what’s happening and likely to happen: where people disagree, we’ll say so.

What do the changes to the NHS mean, in general, for my HIV treatment and who is in charge of it?

In general terms, this will be one of the most significant reforms of the NHS since its creation. Many governments have tinkered with the NHS but this is the first restructuring since 1946 to require actual changes in the law. The most significant of these changes are, firstly, the abolition of local primary care trusts (PCTs) and their replacement with consortia of GPs that will control 60% of the health budget; secondly, enabling a wider variety of providers to bid to run services (hence the fears of ‘privatisation’ of the NHS); and thirdly, transferring all responsibility for sexual health (except HIV) and public health services away from the NHS and to local authorities.

What does 'commissioning' actually mean?

Commissioners start by assessing the needs of a group of people, then plan services to meet those needs. Then they draw up contracts with providers (e.g. GPs, hospitals, voluntary agencies, private healthcare providers) to provide those services. And finally those services are monitored for value for money. Monitoring used to, in the main, look at output – making sure the service was being provided as agreed – but these days increasingly looks at outcomes – seeing if the commissioned service produces measurable improvements in people’s health. The intention of the Health and Social Care Bill is to remove the PCT level of the structure and have non-specialist services directly commissioned by groups of GPs, provisionally called clinical commissioning groups (CCGs).

I’ve heard that GPs will be responsible for commissioning health services. Does it mean my GP will be in charge of my HIV treatment?

 “The single thing people have grasped about the NHS reforms is that in the future GPs will commission and run their treatment and care, including HIV. That understanding is wrong.” – Francis Kaikumba

No. In fact most people with HIV will probably notice very little difference in their current care; in particular, you will not start having to go to your GP for your HIV check-ups and you will still be able to choose which HIV clinic you go to.

Currently, HIV treatment and care is commissioned locally by PCTs but, because it’s still a relatively uncommon and specialist condition, regional groups called consortia do it in practice (you may have heard about the changes in drug provision negotiated by the London HIV Consortium, for instance). After the changes, HIV commissioning in England, far from going local, gets kicked upstairs to a new national body called the NHS Commissioning Board (NHS CB).

The NHS CB takes charge in April 2013. It’s unclear as yet exactly how much local provision of treatment and care will be allowed to vary across the country and who will make the decisions locally. There will have to be some variations because the prevalence of HIV – and the populations affected by it – vary widely from place to place. England will be split into four super-regions (‘commissioning sectors’) – north; midlands and east; south and southwest; and London – and it is possible that, in London at least, what we’ll be left with will look pretty much like current arrangements.

As for what HIV treatment you should be getting, this remains the responsibility of your HIV consultant: but, as last year’s changes in the recommended drug regimens for London patients show,2 cost will become an ever-more important constraint on your and your doctor’s free choice in an era where several drug regimens are roughly equivalent.

Does national commissioning imply that one standard ‘Brit-HAART’ regimen will be forced on us by a shadowy bunch of bureaucrats?

Hopefully not, because the NHS CB will be advised by so-called clinical reference groups of experts for every condition it commissions. It is unclear what mix of experts are going to be included in these groups, but they are the obvious place where bodies like BHIVA, and documents like the BHIVA treatment guidelines, will influence treatment. There is no reason why clinical reference groups might not include patient representatives. BHIVA is also currently revising its Standards for HIV clinical care document,3 with the same aim of guiding national commissioners on what good HIV service provision should look like. It will include a larger and more detailed section on how GPs and other primary care providers should be involved in HIV.

I keep on hearing that the changes are not going forward or are going to be altered by Parliament. What’s happened so far and do you think the reforms will happen as planned?

The bill, put forward by Secretary of State for Health Andrew Lansley, has been accepted in its final vote in parliament, is about to be sent to the Queen for royal assent, and is expected to become law by the time you read this.

 “An awful lot of NHS structures have already been dismantled. It would be as hard to turn back now as it is to carry on. The thing we have to do is make sure it works for us.” – Jane Anderson

One of the odd aspects of the furore around the bill is that many of its reforms are in fact supported and have even been proposed by doctors and other healthcare workers. The government’s biggest problem is that the reforms are happening in a time of economic recession and that every reform is suspected as being a way of making cuts. Hence the fears expressed by GPs and patients groups that local health services will be taken over by large commercial healthcare companies who will provide care for straightforward patients and bundle off anyone who has complicated or expensive health needs to hospitals, or into an untreated limbo.

What will GPs be in charge of? What if I’ve got something like chronic hepatitis B, which has always been managed by my hospital? Or diabetes, which is already managed by my GP? Who will take ultimate responsibility for my health?

A very good set of questions; particularly in the context of the ageing of the HIV-positive population. We’d be asking them anyway, but the NHS reforms have perhaps given a chance for us to codify responsibility in more detail.

The London boroughs of Lambeth, Southwark and Lewisham (LSL), which have the highest HIV prevalence in the country, recently published a report on who should ultimately be responsible for the care of people with HIV in the area. They interviewed local professionals and discovered that, far from people with HIV being disowned, everyone thought they were in charge of their care: HIV consultants, GPs, social workers and key workers in voluntary agencies all thought they had ultimate responsibility. LSL’s report said that, in line with the NHS reforms, the person who should be in charge of co-ordinating the care of the health and social care needs of people with HIV should be their GP, but gave little guidance on how this should be achieved. “The assumption that GPs will automatically be able to fulfil this role is tenuous given their performance in this area historically,” commented THT in their response to the LSL report.

“The direction of travel is inexorably towards shared care, but the problem is that in all the reports I’ve seen on how to achieve treatment and care co-ordination, accurate analysis mixes with a desire to cut and save money.” – Yusef Azad

The issue is not just one of better communication, but of real power and of money: it’s about which professional has the power to decide whether someone should get an expensive drug or social support programme and who should pay for it. On the one hand, at present people are often left dangling in situations where, say, their HIV consultant recommends a treatment but the GP won’t refer because it would be expensive; on the other hand we don’t want to see a situation in which every professional involved in someone’s care has to refer decisions to their GP.

We are not likely to see GPs take over deciding which antiretrovirals you take, however; apart from anything else, the problem that non-exempt patients would have to pay prescription charges has not yet been sorted out.

In addition, central HIV commissioning and cash shortages are likely to mean that you are less and less likely to get treatment and care for conditions that are not directly related to HIV from your HIV clinic. HIV doctors are not necessarily experts on the sort of common conditions like heart disease, diabetes and dementia that GPs see every day and HIV patients over 50 may miss out if they don’t visit their GPs for a health check now and then: GPs have to offer regular ‘MOTs’ for older patients. If there are confidentiality reasons that mean you don’t want your GP to know you have HIV, it should next year become easier to register with a GP in a wider catchment area than is currently possible, or even in the area where you work.

“Testing seems to be a lever for creating genuine interest in HIV in GPs. Once a patient comes back with a positive result then the GP has a patient they already have a relationship with; it’s beginning to unpick the circular argument that GPs aren’t interested in HIV and HIV patients aren’t interested in seeing them.” – Claire Foreman

My hospital is a foundation trust. Does this give it more freedom to decide what kind of treatment I get?

Foundation trusts were part of the last wave of NHS reform. Eventually the government wants all hospitals to become foundation trusts, but initially the status was a reward for staying in the black. It gives hospitals more financial autonomy and means that they can both raise their own funds as an independent body and decide what to spend them on. So yes, they might decide to raise money and spend it on a nice new HIV clinic, which is what they did at the Homerton hospital in east London, where Jane Anderson practises; the hospital, in a poor and multi-ethnic area with high HIV prevalence, decided to make its HIV service a flagship one. But with so many competing demands on a cash-strapped NHS, there’s no guarantee of that and the best way of ensuring HIV is not forgotten is to make sure there’s good patient lobbying inside the hospital and support from sympathetic consultants: see Supporting patient power in the last issue of HTU for more on patient groups.

What if I need treatment for a sexually transmitted infection? Or contraception?

Now we’re talking about the other radical reform. Lansley’s bill will mean that responsibility for public health, which includes sexual health, will leave the NHS altogether and go to local councils. Some people worry that local authorities are ill-prepared to run this kind of service and it could easily get politicised; will we see situations as we do in the US where services like pregnancy termination are subject to the whims of politicians with a religious or moral agenda? In fact this can only be done to a certain extent: running a proper sexual health service will be a statutory duty and the local director of public health will have powers to overrule soap-boxing politicians. There’s still a lot of ignorance amongst local government as to what it involves, however.

“We went to a recent conference of local authorities with a poster saying ‘Do you know what the biggest slice of your public health budget will go on from next year?’. Most councillors thought it was something to do with smoking, drinking or exercise; they hadn’t a clue it would probably be sexual health.” – Lisa Power 

The public health remit includes HIV prevention too, I gather. How is that going to work?

With some difficulty, probably. There will be a new ringfenced public health grant provided to local authorities, meaning it cannot be spent on treating illness but must go on preventive measures. Here, there really is a danger of services becoming politicised and of councils preferring to spend their grant on measures that are more Daily Mail-friendly than sexual health.

Working against this is the fact that, thanks in part to the recent House of Lords enquiry led by Lord Fowler, the government is aware that HIV prevention has not had enough put into it in recent years and that public ignorance about HIV is growing. Meanwhile, in a separate development, the Department of Health has recently held a competitive tender for the national HIV prevention contract in England (which will merge previously separate programmes for African people and gay men).

This could mean that paying for HIV prevention becomes more localised at a time when providing it is becoming more centralised, and there are calls for a national awareness campaign. Local prevention is not a bad idea if it funds decent sexual health support services for local populations but it requires expertise at a time when services are being handed over to bodies that may have none.

In HTU’s report on the UK conference for people with HIV last September you said that there are new bodies people will be able to get involved in if they want to advocate for better HIV services. You mentioned health and wellbeing boards. What are these?

Health and wellbeing boards (HWBs) are supposed to be the crucial bodies when it comes to the co-ordination of public health, sexual health services and social services. Their membership will consist of key players in health in a local area: the director of public health, local councillors, directors of the local GP consortia, other council officers such as the director of social services and key local voluntary organisations. There will be a reserved place for a representative from HealthWatch (see below). In theory, they could serve as an efficient co-ordinator of services that have historically been hard to join together: health, mental health, social services and housing. In practice, they could be a bureaucratic logjam that spends all their time in a monitoring role, commissioning reports, needs assessments and public relations, and too little time on co-ordinating service provision. There was a huge range of feeling about HWBs in my interviewees, from cautious enthusiasm to downright cynicism. They are an experiment and no-one knows how well they will work.

What is HealthWatch and how do you get involved?

This is the latest replacement for the bodies that are officially supposed to serve as the voice of health service users locally. The predecessor to HealthWatch were local involvement networks (LINks) and before them, community heath councils. There is an obligation to provide them but a weird arrangement where they can’t organise themselves: another body has to offer to ‘host’ them, and in recent years some voluntary organisations – an example is the housing charity Hestia – have made a lot of money hosting local LINks. The problem is that any patient can bring any kind of problem to their local HealthWatch and people with HIV may have a hard time raising HIV-related issues if they are outnumbered by people who are more concerned with hospital cleanliness, disabled parking bays, services for the elderly or other such issues.

“My previous job was to help set LINks up and in two years there, I never heard a single mention of HIV. How do you set up mechanisms to listen to the ‘patient voice’ for a disease people don’t want to be identified as having?” – Francis Kaikumba

What other opportunities are there for having some say in HIV and sexual health services in my area, or nationally?

Historically, getting the needs of people with HIV met has never started off with lobbying through the official channels. The verdict amongst my interviewees seemed to be that in high-prevalence areas it might be worth having a go at raising HIV as an issue in your local HealthWatch, as they do have a statutory place at the local table, but that you are probably more likely to get your concerns heard by other means such as:

  • forming or joining a clinic patient group
  • visiting or writing to your MP
  • getting local businesses, serving your community, interested in HIV prevention and provision of support
  • writing to the media
  • raising issues in e-forums such as THT’s MyHIV or general campaigning websites such as 38 Degrees.4 Ministers really do pay attention to websites with a strong collective voice.

HIV is likely to remain an issue for populations that are both stigmatised and marginalised but who also have their own solidarity and countercultures.

There are opportunities for the voices of people with HIV to be heard in the new NHS but, as ever, many campaigns will probably start with one or two people, or small groups, and take off when they strike a chord in peer groups and with sympathetic professionals who can help, such as doctors and MPs, and can support their bid to get a place at the committee table. Activists don’t have to start by going through the ‘proper channels’ but it’s important to know they are there.

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.
Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.