PrEP for HIV rolled out nationally would, on the figures I have seen, cost less than the NHS spends on dandruff and paracetamol. Much, much less. But does that make it a good investment? The only way we will find out is through a proper, transparent and robust prioritization process.
The Court of Appeal ruling today means that will now need to happen. The Court has dismissed NHS England’s appeal. It upheld much of an earlier judgment which NHS appealed against. The full judgment needs studying but the effect of the ruling will be that NHS England needs to put PrEP through a fair, transparent and proper prioritization process.
NHS England immediate response
This has been met by a disappointingly grudging and obfuscating release from NHS England https://www.england.nhs.uk/2016/11/update-on-prep/
I’ve blogged elsewhere including in Local Government Chronicle that of course we understand NHS England has to prioritise, the point is it needs to do it fairly and transparently. The tactics over PrEP were distasteful, condemned by charities representing patient groups they tried to play off against one another and, unfortunately, has now cost an awful lot of taxpayers money to confirm what most of us first contended.
NHS England’s news release among other things said three things about the judgment, some of which miss the point:
“First, it establishes that NHS England has the ability but not the obligation to fund PReP.” Actually that’s been the contention of most of us all along. This is a redundant point.
“Second, it means that should we decide to do so, we would not be subject to legal challenge on these grounds from rival ‘candidates’ for specialised commissioning funding.” Indeed. but the contention of many of us is that NHS England needs to face this fair and square through a proper, transparent and methodologically robust prioritization process. Waving round threats about legal action from others isn’t going to let NHS England off the hook from doing this properly. And NHS England seems to be slow to learn that this is just what happened – NAT and LGA took legal action and NHS England lost. So the point of all this, surely, is prioritise properly and fairly. Otherwise we’ll end up back in court.
“Third, it overturns the High Court in helpfully clarifying that Parliament did not intend that the NHS was expected to fund local authorities’ public health responsibilities just because they have not done so.” This is entirely beside the point and is a tenuous reading of the judgment. The point is NHS England CAN , contrary to their argued position, commission prevention initiatives. They contended all along they couldn’t. Let’s not start re-writing the history of the case and its particulars now NHS England have lost.
Things to remember during the coming months
Throughout this and what comes next, we need to remember the following key points:
- NHS England are up against it financially. But so are local authorities. Working together, not resorting to legal action, is the way forward.
- As I said above, PrEP will cost much, much less than the NHS currently spends on Paracetamol, and dandrfuff! And it will, in cost-return terms, save more. It makes, on the face of it, economic sense.
- The bigger prize, and a prize the health economic literature is starting to address, is the effect of investing in PrEP to stop the epidemic and end new transmission in England effectively.
- Fair and equitable prioritization needs to be a key process in the future of health and social care. Time to start now.
The wider issues
Importantly, it is established that NHS England has preventive powers, including powers to prevent HIV and commission drugs like PrEP. This is a victory for good sense and a joined up health and care system, which should put prevention at its heart. This decision makes good sense
- for the taxpayer, because it enables an intervention that will save more than it costs to be commissioned
- for people, because we have another powerful tool in the armoury of HIV prevention
- for a strategy to end HIV transmission in England, which is now within our reach, but only if we work better together, and use PrEP as one of the many tools to achieve that
It’s time to draw a line under this and work together to deliver a joined up HIV and sexual health system, which is what the taxpayer has a right to expect. NHS England has said today:
“In the light of the Court ruling we will therefore now quickly take three actions. First, we will formally consider whether to fund PreP. Second, we will discuss with local authorities how NHS-funded PreP medication could be administered by the sexual health teams they commission. Third, we will immediately ask the drug manufacturer to reconsider its currently proposed excessively high pricing, and will also explore options for using generics. We expect to be able to update on these developments shortly”
That’s immensely welcome, on all fronts.
I think most of us realize times are tight. And NHS England is right that we need to prioritise. My point all along is that their chosen tactics were a poor way to do it. It’s time now for everyone to come to the table, work together, and set about fair prioritization.
Work still to be done?
The work of doing a proper, fair and thorough prioritization process now must begin. This will need to evaluate, fairly and transparently, all the data in favour of PrEP and all the data against, as well as date in favour of other contender interventions. And it will need to compare them, fairly, on a like for like basis.
Having been involved in health care prioritization for many years, up to and including judicial review, the real work starts now. What has happened hitherto has been a tactical game.
It may be the decision is still to prioritise something else, but a few of us are coming together to make sure we subject the NHS process to as much scrutiny as we can possibly give it. The health economics appraisal, the statistical appraisal, the comparative cost-benefit appraisal and the process of decision making will all now be subjected to intense scrutiny. NHS England played the game of “we’ve had legal advice we cant commission this” then played the game of “other candidates might sue us”.
The only safe way forward is a methodologically robust, transparent, equitable and fair prioritization process.
I, and many others, will be watching this with intense interest.
In October, Public Health England produced its national guidance and I was privileged to be quoted in it. https://www.gov.uk/government/publications/suicide-prevention-developing-a-local-action-plan . The personal and the professional intermingled in what I said.
Tomorrow (November 9th) we will be hosting our local suicide prevention summit in Hertfordshire. Over 80 people will convene, from a range of backgrounds and concerns, to discuss and shape our future work on reducing suicides locally.
People who have been bereaved, people who have survived attempts at suicide, clinicians, agencies with concerns from transport to NHS and elected members will come together for what will prove an intense and important morning. I will stay for as long as I can before then going to present papers to our Cabinet.
I have in mind right now the inspiration of our Cabinet Member, and my colleagues who have organized and are leading this. Their leadership is writ large throughout this. For me this is an area where elected member drive, public health technical skills and community leaders like the folk behind Hector’s House, Ollie Foundation, SOBS and the MindEd Trust can come together despite austerity to look at the possible.
Since that guidance was published I’ve had a few colleagues in other areas say how they find this area challenging because of previous experiences in their lives. I can relate to that. I find this time of year emotional and this subject bittersweet to the memory. But I think that can be a good and energizing thing. For me, I can’t separate the personal and the professional in this. Though that does mean I need to be very conscious that my experience is not that of others, nor is it privileged or special. It’s just mine.
Suicide prevention for me is personal as well as professional. I’m not going to begin to try to get away from that. I find that this orients me in this whole process. It also helpfully reminds me that I’m not special, and am here to try to serve. Doing that in a world with no money is going to be interesting but I am going to try. We have nothing to fear from allowing the personal to inform, elucidate, energise and challenge the professional.
I sit here with the enduring memory of those in my life I have lost and, thank God, those I have not lost despite attempts, to suicide.
A best friend since I was young (I wrote about him in my quote in the PHE guidance) for starters. Then another great friend, D at whose bedside I, his partner and family spent too long watching him die in discomfort and pain. He was a man talented and infuriating in equal measures. who made an attempt to take his life – no we never did work out whether he really was serious and neither did the Coroner – changed his mind, seemingly recovered and then later just collapsed. He’d made a kind of half-hearted attempt at cutting into his veins. Being him he’d used a very small mother of pearl handled fruit knife.
By the time he collapsed the organ and system damage done by what seems a simple over the counter drug rendered it too late for any of us to save him. We could only hold, weep and watch in powerless frustration. It all felt clumsy. I felt clumsy. Even his funeral – at which I officiated at his request – I felt I didn’t get right. He and his parents wanted us all to clash and be garish. So I found a YELLOW shirt, a PURPLE tie and put the two together. Great. The shop assistant must have though we’d taken leave of any sense of taste. Unfortunately the suit I wore, not quite thinking, turned the whole lot into something muted and nearly not dreadful. (It was 1998, come on!)
Even the F…ing crematorium played the wrong piece of music at the wrong time despite three practices, and when I pressed the button for the lights to go down, the curtains to come round and me to read the committal, naff all happened. And then when we scattered his ashes his partner dropped the urn. On my foot.
D’s mother said after the funeral that she felt very proud afterwards of saying “bum” in a church during her elegy. I was too busy trying to get C, one of D’s mates to get through his poem without choking in tears at the time to notice and realizing someone had nicked the matches I had placed very carefully for the candle lighting in memory. So I even missed that. Then one day I realized D would have found this all absolutely hilarious. And I laughed through my tears.
A third friend, A, got into drugs and couldn’t cope. He’s now got a degree and is a social worker. Another, S, just couldn’t handle what was going on for the people he loved. A long night with charcoal drinks and vomit bowls in a tatty corridor in a hospital in Southern England followed after I found him and took him to A and E. Thankfully, he’s now sorted and thriving. Don’t think he ever forgave me for joining forces with the nurses though.
Unsurprisingly, as I get to doing my introduction to this event, tomorrow, a range of things are going through my mind.
November is always a time of emotion for me. November for Catholics is the month when we remember, grieve for and celebrate our dead. For starters we write a great long list of folk we’ve lost and remember them before God every day of the month. Among other customs which must look odd to the rest of the universe. For Catholics All Saints Day is immediately followed by All Souls day. The community of faith consists of the living and the dead, and they are all to be cherished. There was a time when I found this tradition silly, awkward, embarrassing. I now realize just how valuable it is because it reminds me of those who shaped me for who I am.
Last week I took part in the launch of a website called the Art of Dying Well, a conversation and tool to help those at the end of life and those who love them. I’m one of the stories on the site (my brush with death and what it has given my life. I’m the only person on the site who swears while telling their story. D’s mum would be proud!)
This week I’m at a suicide prevention event. Two weeks from now we will hurtle into World AIDS Day and the AIDS memorial quilt will be at the World AIDS Day Mass, where I will call to mind friends whose lives have taught me much and who I have lost. On 4th December up comes the anniversary of my diagnosis with cancer. Could you believe looking back that this is an energizing and happy time? But it is.
One of the amazing things about this job is that I sometimes find myself in the middle of chains of events like this month and have to remind myself what’s going on. And what’s going on here is about cherishing life, with the personal and the professional informing each other.
How does one hold all this without contradiction? Well, what I am trying to say here is that this all actually makes sense to me. Not terribly sure I really can explain it much better than that. And that means being open to the emotion that’s a part of it. I can no more avoid the emotion of all this than I can fly. Because it’s all too much a part of me. And because it keeps me real, and hopefully not wooden. I can’t do public health without emotion. I think I’m better for it. Whether that helps you I don’t know. But it works for me. Being professional does not mean quarantine for one’s emotions. It means acknowledging them and their impact.
Tomorrow I will have the immense privilege of being with those who despite their bereavement and grief are taking part in a collective exercise to save and cherish life. I know from my own experiences that getting to that place is bloody tough.
I believe in reducing and preventing suicide because the dignity and preciousness of each person means we should seek to prevent suicide wherever possible.
We may have a low suicide rate here, but that doesn’t mean we shouldn’t try to reduce it as much as we feasibly can. So for as long as I’m in the room tomorrow, I’m up for the conversation. Because I will be in a room full of people I admire beyond words.
Yesterday (Friday October 21st, 2016) a group of people convened to discuss the future of HIV services. National experts Prof Jane Anderson (National AIDS Trust, Homerton, ex PHE, now King’s Fund ) Dr Michael Brady (Medical Director, Terrence Higgins Trust and Clinician in South London) and David Buck (King’s Fund, leading the future of HIV services work) came and spoke. Their presentations, passion, vision (and from Michael Brady the mathematical modelling for an utter geek like me) were stunning.
Local experts (PHE epidemiologist, local HIV clinicians, vol sector services, social workers, commissioners and others) spoke. People with HIV were engaged (but really not enough, and not diverse enough,we recognise that.)
I opened the workshop with some slides on trying to understand where we are, what that means for commissioners, and where we might want to go. They’re here http://www.slideshare.net/jamesgmcmanus/future-of-hiv-services-hertfordshire .
I also wrote up some suggested conclusions at the end, and they are in the slides above. We’re still writing up the detailed work from people and we will share all slides and work online soon.
A strategic vacuum?
What national event was this?
It wasn’t. It was an event to try and navigate a local future for HIV services in our local area. It was held in what feels like a national policy leadership vacuum. At one point I almost put on an empty table the name cards for policymakers who seem utterly missing from this debate despite having being invited. NHS England were once again conspicuous by their absence from the table.
I thought a little while ago we didn’t need a new and another national HIV strategy. Well, I was wrong. We do. And it’s pressing.
Although the early years of HIV have gone, we still face challenges. Professor Jane Anderson pointed out that however good a thing it is in itself, we risk seeing people who are maintaining viral load suppression as a success despite the fact that there are many other things going on for them, and for some folk a lot of work has to go into getting just that. 90-90-90
UNAIDS targets are, she says, a place within our grasp. But that isn’t enough. I agree. That doesn’t mean we should just continue funding existing models of service either, by the way.
Back to the future?
In some respects we seem to have allowed our narrative on HIV go seriously awry. We talk about it as if it’s a manageable long term condition, with often very little nuance beyond that. And in some respects it may be. But the richness of narrative beneath and beyond that about what this means is needed. In and of itself this long term condition narrative is an impoverished one. It’s neither complex enough nor dynamic enough to articulate the similarities between and differences from HIV and other conditions like Diabetes or COPD.
Twenty two years ago I read a book called “Productive Living Strategies for People Living with HIV”. It changed my thinking at a time when we could only dream of what new generations of antivirals would bring, and the new health challenges which would come as a consequence of people living much longer were as yet unknown.
It’s time to survey the horizon, what we know, and go back to what we learned from those early years about what services need to be in place for what stages of living with HIV infection, and refresh this for our current situation. We need a new narrative that providers and commissioners can coalesce around and one which takes us away from the simplistic “long term condition one.”
Dynamic condition, systems thinking
The long term condition narrative fails for me. When I am faced with a friend who otherwise is holding down a job and is in terms of undectable load a success but needs a weekend of just collapsing in a heap and being cared for, or when I visit someone with multiple mobility and sensory problems which are transient and can’t get mainstream services to do what she needs, or when I visit someone whose anxiety and depression is partly caused by stigma, the long term condition narrative dissolves.
The dynamic nature of living with HIV and the fact that we need a variety of agencies doing different things, but probably one holding the ring, means we need a radical rethink using systems approaches.
I , for one, am excited about what the work of the King’s Fund on HIV futures will bring. Because expert people with and without HIV experience will look at the system and identify some local and national opportunities and barriers and feed into this. It’s long overdue. And the fact we got this bunch of folks to our local seminar was fantastic.
HIV in four voices
It seems we speak about HIV with at least four voices, none of them unified.
- The voice of policy – seems focused on a one note monotone of treatment and testing and little else
- The voice of experts – complex notes rising to a harmony which tells us we need a multitude of foci and a system wide approach to reduce transmission and secure quality of life
- The professed voice of commissioners – has too often repeated the uncovincing melody that HIV is a manageable condition and not understood the nuance or complexity behind that, and seems increasingly out of tune with reality
- The voice of people living with HIV – complex and not well heard yet vital
This discordance needs national and local leadership to once again sound in unison the state of HIV in England and the must dos which flow from this.
Renewal and re-engagement
We face some significant challenges, and we need to navigate a way through them. Some lessons from yesterday were:
- HIV shows different epidemiological characteristics – no one strategy for testing,diagnosis and treatment will work everywhere in England
- The treatment can cause as many problems as it solves
- Official statistics even on testing uptake dont reflect all the work going on
- People with HIV present needs beyond NHS testing and monitoring and these vary by stage of disease and by person
- The unity of the person – physical, emotional, psychological, spiritual – has gotten lost in the discourse about getting folk to an undetectable viral load. That’s brilliant, but the melody of thriving, coping and surviving with HIV is more complex and we must recapture that
- No single national one size fits all strategy is sensible, but there are some things which we need national leadership for – not least a push towards integration
- You can read HIV into the principles of the NHS Five Year Forward View. Where is the leadership?
- Can anyone point me to a single Sustainability and Transformation Plan which addresses this?
- We need to still do more to engage people with HIV in service design
- We need to refresh and renew self management
- We need to ensure services join up
- We need a clear comprehensive system wide view from preventing transmission to diagnosis, treatment and care and self care
- The complexity of HIV as a consequence of all of this is often not well understood by commissioners
We need to articulate the new system from PrEP to Care and back. On 6th December I have been invited to speak to the National HIV Providers’ Forum on something like this, as a commissioner. I will probably learn and take much more than I contribute, but this is a discussion we need to have together.
Jane Anderson brought to life the complexity of HIV with three vignettes of three people who, while all virological successes in 90-90-90 terms, are complex and need more. Stories from people in the room of treatment need and experience ranged from those thriving with HIV who need their testing and monitoring to fit round their lives to those with a range of complications and issues who found existing services dont meet their needs.
Public sector finances
There is less money. Commissioners in a number of areas are cutting HIV services. What we should be doing is sitting down and doing re-visioning exercises to look at what is needed and for what cohort of people.
It is simplistic and untrue to say HIV is easily managed by all. Equally it is simplistic and untrue to say that the service models of fifteen years ago (lunch clubs) are what we need now.
We need a different dialogue on charting a course for services. I attempted to do some of this in my population segmentation slides.
That doesn’t mean financial cuts won’t come. But it should mean that redesign, prioritisation and service integration become more important and fairer. This will continue to have profound implications for providers and commissioners. Jane Anderson suggested that some providers in HIV could branch out to other areas too. Rather than integrate HIV with other generic services, the stuff HIV services have learned needs to be shared with others. I can think of areas like Diabetes, COPD and Heart Failure where the expertise and know how in HIV could be easily transferred to the benefit of many. (My dad had COPD heart failure. Some of the most successful stuff I did with him I learned from friends I cared for years ago.)
All the more reason why we need all the system leaders to sit down around one table together and share one public pound. The taxpayer has a right to that, and so do people with HIV. NHS England, are you listening? We know you have an impossible task with diminishing staff but we could help you out of this…there are ways. Come, let’s sit down and talk about how we help each other.
So what next?
At the end of our workshop we had a range of actions. In short, we’re having a redesign to create a new strategic plan and we are going to try some new ways of engaging people with HIV in this. But several people said it’s about time to go beyond UNAIDS 90-90-90 targets.There were various ways of expressing this, but for now here is my (perhaps rather inadequate) take on this below. UNAIDS 90-90-90 tells part of the story, but everyone felt it wasn’t enough. And together we articulated some more tasks.
Beyond UNAIDS 90-90-90
90% of people diagnosed
90% of people on treatment
90% of people achieving viral suppression
OUR ADDED 90-90-90
90% of people engaged in shaping and designing services
90% of people with optimal quality of life
90% of people aware of the facts on HIV and commited to reducing stigma
Light amidst the encircling gloom
Ambitious? You’re dead right. Achievable? Yes, as a marathon not a sprint. Necessary? I believe so. If we take everything we should believe about HIV – we want an end to HIV ongoing transmission and it’s doable, HIV is manageable, it’s complex, it changes and stigma are huge issues – then these priorities naturally fall out of any decent strategy.
But we need national leadership in this, and that needs to be joined up across all national agencies, not just left to one, while others pick and choose whether to ignore or engage.
Who’s up for it?
So we have judgement over who in England has the responsibility to fund pre-exposure prophylaxis for HIV, or PrEP. https://www.judiciary.gov.uk/judgments/national-aids-trust-v-nhs-england/
Mr Justice Green has declared in favour of the National AIDS Trust and Local Government Association. NHS England has misdirected itself as to its statutory powers and duties on PrEP, and can – indeed should – see itself as the responsible commissioner. There are reports that NHS England will now appeal.
The judgment says quite clearly that
“Notwithstanding any and all of the above the issue for the Court is a narrow one – is NHS England correct in its analysis of its powers and duties? If it is then the wider policy and budgetary issues which arise are for the Secretary of State and Parliament to sort out.”
His judgment goes on to say at paragraph 6:
“In my judgment the answer to this conundrum is that NHS England has erred in deciding that it has no power or duty to commission the preventative drugs in issue. In my judgment it has a broad preventative role (including in relation to HIV) and commensurate powers and duties. But I have also considered the position if I am wrong in this. On this alternative hypothesis I am of the view that NHS England has still erred in concluding that it has no power to commission the PrEP drugs in question. Either: (i) it has mischaracterised the PrEP treatment as preventative when in law it is capable of amounting to treatment for a person with infection or (ii), NHS England has in any event the power under the legislation to commission preventative treatments (and therefore falls within its powers however that power is defined); because it facilitates and/or is conducive and/or incidental to the discharge of its broader statutory functions.”
This is quite significant judgment. I will be interested to see what the grounds of appeal are.
NHS England will now, if it doesn’t appeal or if it loses the appeal, have to consider PrEP for commissioning on its own merits. It isn’t, contrary to NHS England’s lately arrived at view, a duty for local authorities. Meantime if NHS England appeals we are still in limbo.
This judgment is worth studying in detail, not least because of what it says about NHS England’s powers. Paragraph 110 says
“First, the power of NHS England includes commissioning for preventative purposes and this includes for HIV related drugs. Second, in the alternative even if NHS England does not have a power to commission on a preventative basis the commissioning of PrEP is to be treated in the same way as the commissioning of PEP, i.e. both are provided on the basis that the patient is assumed to be infected. Third, in the further alternative the commissioning of PrEP is within the power of NHS England under Section 2 NHSA 2006, even if properly analysed it is a preventative treatment.”
This judgment as it stands emphasizes NHS England’s role as part of a preventive system. That’s an extremely welcome judgment for the health of the public. Whether NHS England agrees, is another matter.
The decision is important for other reasons too, because of some of the principles it reinforces is about what NHS England can do, should it wish, and how it shouldn’t take a narrow and restrictive view of its powers. I predict others will study this as part of the process of challenging NHS England decisions in future. The equality argument advanced was never going to be even the main argument of weight here, never mind the clincher. The judgement makes this clear. This was about powers and duties in the provision of a health service, and whether NHS England has them on PrEP. And the judge makes clear NHS England does. I’m not surprised NHS England are talking of appealing. The ratio of the decision is uncomfortable reading for any organization wanting to take a narrow interpretation of its powers and duties in the current financial climate. And this judgment drives right through that.
NHS England would have had us believe it’s own version of two ridiculous things before breakfast: that it had the power to fund and run a team giving healthy town planning advice to local authorities as prevention which is clearly a local authority function in law, but didn’t have the power to commission HIV treatment as prevention because that was, err…a local authority function in law.
That bizarre and unhappy rationale was forensically pulled apart and found wanting in a judgement which spans over 60 pages.
The same taxpayer meanwhile foots the bill for one part of a system (NHS England)attempting to shunt costs onto a second (local authorities) which that second part of the system rightly resisted, only to have a further part of the system (the High Court) quash it. Tax pounds went into legal fees, not HIV prevention or treatment. Meanwhile the human cost is that some people who might otherwise have remained HIV negative may have become HIV positive, at least some of whom those tax pounds could have kept uninfected.
It’s time now for NHS England to sit down and have the discussion about a proper strategy to end HIV, and get us to the UNAIDS 90 – 90 – 90 targets. It can be done. It ought to be done. And NHS England needs to be at the table as a welcome partner, not a grudging paymaster. England needs a proper HIV strategy, and an end to this unedifying shirking of responsibility.
The upside for NHS England is that if it does this properly it will gain financially from reduced costs for HIV anti-retroviral treatment for those whose infections are avoided, and from the costs for related ill-health and complications. It will also gain £520million by some estimates from the money it will save on switching to generics.
I put my hand in my own pocket to contribute to the National AIDS Trust’s costs. I’d do it again with no hesitation. But just like you I’ve also paid through my taxes for NHS England’s intransigence and bad grace. I’ve also paid like you through my taxes for local authorities to take their side of the matter to court.
Don’t get me wrong. I am very, very, grateful for this decision. Not just because it establishes NHS England does indeed have the power to commission anti-retrovirals as it kept saying in all its documentation until its Damascene u-turn earlier this year. But also because it should give NHS England pause for thought before it tries this with something else it doesn’t want to fund. And NHS England seems to have acquired an appetite for cost shunting.
NHS England asked us to believe for over eighteen months that on the face of it, it wanted to be the commissioner, said it was the commissioner and then in March this year had a blinding flash of realisation that it had no powers. The judge has clearly traduced that clunky and wholly unsatisfactory story.
We have, as a system, some big issues to be discussed now and NHS England needs to come to the table as a partner. On the agenda we need to consider:
- Will NHS England fairly prioritise this through the commissioning process, or will we get further tactics and cost-shunting attempts in an attempt to avoid commissioning PrEP?
- What happens to the participants on the PROUD study, which announced the closure of access to PrEP on 29th July? http://www.proud.mrc.ac.uk/
- Similarly what will happen with acces to PrEP through the forthcoming DISCOVER study?
- What happens now to the £2m NHS England funding for early implementer sites? https://www.england.nhs.uk/2016/05/prep-provision/
- Who pays for the associated testing (kidney function etc) for people on PrEP?
- How do we roll it out for those most at need?
- How will we get a proper Treatment as Prevention strategy with a partner – NHS England – that seems difficult to communicate with and is struggling with so many challenges?
But all these things notwithstanding, there are two other things foremost in my mind. First, that this at the end of the day has been about money. Second, that we are not out of the woods yet, we will need to watch very carefully to ensure that NHS England puts the issue of PrEP fairly and reasonably through its commissioning process.
Why do I say this?
First, the money. Those more cynical than I might conclude this story is and always has been about money and the fact NHS is struggling to contain a burgeoning set of demands for specialised commissioning, and the use of statutory responsibilities as a flag of convenience. There is no doubt NHS England faces tough financial challenges, with the Treasury watching very closely and the Public Accounts Committee recently saying NHS England hasnt communicated clearly how its specialised commissioning function fits with the future strategy of the NHS or its need to save £22billion. http://www.nationalhealthexecutive.com/Health-Care-News/nhs-england-told-to-set-out-how-specialised-care-fits-within-fyfv-and-deficit-by-october
NHS England is heading to overspend its specialist commissioning budget, at a time when the pressure is on. You can read more here. http://www.hsj.co.uk/topics/finance-and-efficiency/nhs-england-forecasting-first-ever-overspend/7009560.article . NHS England is clearly struggling to control the costs of specialised commissioning http://www.nhsconfed.org/resources/2016/05/national-audit-office-critical-of-specialised-commissioning and avoiding bills for PrEP would have helped, even a little. They do face an extremely difficult task.
Second, we need to make sure that the future decision making process on PrEP is conducted rigorously, equitably, and based on its merits. one of the reasons advanced by NHS England for not taking PrEP to its specialised commissioing process was the argument that other providers and manufacturers of drugs and technologies might legally challenge. I wonder whether further, similarly creative and equally implausible , arguments will be adduced during any appeal or the next stages of considering PrEP. NHS England has made it repeatedly clear that it does not want to commission PrEP. It even blamed – in what some have suggested is a tactical move to remove sympathy from the PrEP lobby – the delay in commissioning eighteen other procedures, including specialised procedures for children, on the PrEP judicial review, https://www.lgcplus.com/services/health-and-care/nhs-england-blames-hiv-legal-action-for-new-treatments-delay/7008311.fullarticle .
None of this, however, excuses the process we have just been through. What it does mean is that we must keep a very close eye on what happens next. We need to be scrutinising every paper on PrEP from NHS England very, very carefully.
Well, today we had the EU referendum result. And whether you are happy with it, or not, you will doubtless have seen significant speculation and some forecasting about what it may or may not mean for public services.
Speculation abounds about the next steps. The vote to leave doesn’t exactly give a thumping mandate for leave, some say. Others are jubilant. Yet others suggest that Parliament, which still has to vote to invoke Article 50, may decide not to. A last minute deal may be found, some suggest. Nearly three million people have already signed an online petition for a second referendum, and I will be out of date on that within minutes
All of this speculation feels overlaid by a mix of shock for many, elation for some and grief for others at a decision we have not yet as a nation fully understood the implications of, whether you were in, out or don’t know. It feels a bit scary, both for Brexiteers and EU-romancers. I may well personally wish we had voted to remain, but the task now is to keep going, and adjust our strategy for the health of our population to the developing circumstances.
Whether you like the outcome of the vote or not, our job is clear: pull together, articulate what we need to do to make this work as best we can and make sure we are neither distracted by rumours nor dragged into needless scares. Recession is not inevitable. As ever, this will be complex and nuanced. Time to keep calm and carry on.
There will be a strong psychological dimension to this change – not just in relations between families, partners, friends and work colleagues who took different sides. The nature of what it means to define ourselves as British or European will change, especially if the Union itself moves further towards independence for Scotland; and sovereignty changes in Northern Ireland as yet unkown. The facebook page for Britain will continue to say “it’s complicated” for some months, it seems.
Navigating forward will take leadership. Speaking to a few colleagues today, we are all wondering what the next steps for us are, and what public health leaders should seek to do. I think there are several tasks for public health leaders to be getting on with, to enact what the public have said they want. So here’s my attempts to put them into blocks.
Short Term (2016)
Let’s be honest, nobody really knows what will come out of the woodwork this year. There is no blueprint for this. We may see a reshuffle at Cabinet level. We may see a period of political instability. We will see a new Prime Minister. We will see a continued emphasis on reducing the defecit and the cuts will not reduce. Even if the economy picks up considersbly, I have alteady blogged peviously on hee about how government has chosen to shrink the public sector as a deliberate policy choice, and not just for economic reasons. Will that reverse? Highly unlikely in the short term. We are not going to magically see hundreds of millions immediately reinvested into public services including the NHS because it will take two years at least to disentangle the web of finances from Europe.
In any case, signifiant proportions of the money we send to Europe already come back for investment. The Financial Times yesterday pointed out that those areas most heavily for leave were most economically dependent on the EU. Will that money be replaced from the UK’s eventually retained funds? We dont know. What will be the health impacts of that money not being available in whole or part? Could it be better spent? What happens to EU funded projects to get people into work? What about EU funded health research for innovation? All of these are issues we will have to watch carefully.
And we just cant put ever more money into the NHS. We have to face that fact. There are some major structural challenges to NHS estate, finance, organisation and ways of working which need a range of solutions. Brexit in and of itself will not answer all of those. It may bring some benefits, it may not.
We will almost certainly have a jumpy few months where scare stories in the media or from various sources will distract us, and then as things begin to become clearer we will doubtless settle down a bit. People we encounter at work – for or against exit -and in our personal lives will be curious, scared, worried, hurt or angry in different measures. We have a leadership task to keep our teams and our partnerships on track and sighted on the big challenges ahead.
- In the short term, we need to keep running the system, calmly and determinedly. We are in the middle of significant cuts imposed by government and making sure services run is the most important thing. Very little is likely to change hugely in terms of the law before Autumn.
- Our workforce may need reassurance. People will be wondering what this means, if anything. Non UK Nationals who work for us may wonder if they’re still welcome (I’ve been asked that already.) Well, they are still legally entitled to work where they work unless and until the law changes, and an important task is to reassure them they are still wanted and important, whether they work directly for our agencies or providers.
- Some things we have been waiting on like the Obesity Strategy and Drugs Strategy may get kicked further into the long grass as government focuses on understandably more pressing matters
- Procurement rules and regulations will still apply unless and until government changes them. Our biggest leadership task right now is making things work and reassuring folk they will.
- All other sets of laws derived from Europe will continue to apply unless and until they are abrogated.
- There will be no economic miracle which will see masses of money redirected into the NHS or Public Health. There will be a need for building a strong market economy for Britain.
- We still have Sustainability and Transformation Plans to deliver with the NHS, and prevention is needed more than ever to reduce the burden of ill-health.
- The NHS financial crisis is still with us, and the massive cuts in local government too. In the short term, that will certainly not change.
Am I sounding blunt? Well, there are two other really important things we must be keeping our eyes on at this time, too:
- We have no idea whether the market upheavals will mean a recession and the need to either raise taxes or make more cuts in public spending. There seems, on the face of it, no reason why a recession must happen. After all, Germany alone exports 50 billion euros worth of goods a year to us. The UK remains an important market economy. But markets, and people in them, can be perverse. We have a job to do to counter anyone who would simply talk us into recession when that needn’t happen. Whatever our views, now is the time to focus on keeping a strong economy.
- Devolution discussions and plans may go into difficulty or delay as people wonder what the new context means. They dont need to, necessarily.
Medium Term (2016-18)
Public Health Leaders are going to have to be able to scan and span both the detail and the horizon for well beyond next two years at least.
The horizon scanning involves things like whether a recession is coming, where we and the NHS and Social Care get workforces for essential jobs from and things like whether during the changes population health gets better, stays the same, or worsens. Resricting UK jobs to UK citizens looks simply impossible in the short term given the amount of money we’d need to invest in training alone.
- Those of us reliant on EU and extra-EU workforces to run services will need to think carefully about workforce planning, and start that thinking soon. What will government do, if anything, about non-nationals here? What about recognition, job supply, recruitment and retention? How do we build our workforce and where do we get it from?
- The speculation that diversity law will change massively seems to me to be scaremongering. The Disability Discrimination Act is an important UK Act, for example. That doesnt get abrogated because we leave. I cant imagine any government will simply take an axe to every EU inspired UK law. For one thing, people on all sides of the debate have said some of these laws are good – disability discrimination, for example.
- Some EU health measures such as air quality will need to be considered – do we adopt them in UK law or not?
- Those areas heavily benefiting from EU funding will need to consider the impact on health outcomes from what may happen to that funding. Will it simply be replaced from inside the UK or will it go into making the budget balance, effectively bringing further cuts in public spending and infrastructure, and with it population health issues from employment to economic performance to access to services?
- Population mental health, self-harm, suicides, harmful alcohol consumption and a host of other things historically rise or fluctuate in times of national uncertainty. This is a current time of uncertainty. Monitoring this is going to be crucial.
- Trends in employment and economic activity will impact on health. We know that. What way will this take us?
- What are the health impacts of the changes in funding, law and governance?
The detail will include looking at whether, if we do go ahead, the process of leaving necessarily abrogates EU laws like the working time directive,and what, if anything, replaces them. Understanding this is crucial if we want to make sure that some of the avoidable cracks, missing points and dysfunctions arising from things not thought through in the 2012 health and care reorganisation don’t get repeated.
There will remain, despite exit, the need for public health and scientific collaboration across Europe. Health protection, disease surveillance, scientific collaboration on research and treatment and response to some common threats (pandemics, emerging infections, antimicrobial resistance and ‘flu) will continue to be important simply for reasons of economic migration flows (which won’t cease anytime soon), trade and tourism travel, geography, climate and 30 years of doing these things together. We’ll still be in NATO, WHO and other collaborations unless we decide to leave, and so Scientific leadership is going to be crucial to articulate what a new science collaboration framework looks like. And PHE will still work collaboratively with others to protect our health, including european nations. Monitoring health outcomes across the EU is likely to change. Losing skills and brainpower needlessly as bright and commited non UK academics, policy professionals, clinicians and providers move away is, at the stage, avoidable.
Longer Term (2018-2022)
Leaving the EU won’t necessarily abrogate the Human Rights regime or indeed existing related precedent in law (judge-made case law by European courts) unless and until government says so. So a lot of things will need time to change, unravel, be abrogated or simply absorbed. Expect policy confusion and complexity as we go on this journey. Its just part and parcel of such huge change. A big question is whether we have the calibre of political and civil servant leadership at national level to do this strongly and coherently, and how that is replicated at local level.
Monitoring health outcomes and the economy and looking to see what kind of public services will be around in 2022 is going to be the most important task. Will the consequences of exiting the EU make us more or less prosperous? What will the workforce look like? What will be the picture of inequalities in health? Will our public services be financially sustainable?
I don’t have answers to these, and I’m not sure I would trust anyone who claimed they did right now. As yet we see through a glass, darkly. But one thing I am convinced of: more than ever this is the time to make prevention of need for costly services work. More than ever this is the time to get people as fit and healthy – mentally and physically – as possible. More than ever this is the time to look at the big challlenges to an equitably healthy population.
These things remain…
Some things won’t change – the need to have a strong economy is crucial to good health, and a healthy population is crucial to a strong economy: our workforce can’t compete with China if it can’t get off the sofa. And our workforce needs to be emotionally and psychologically strong and resilient. Some economists suggest Brexit will make this better, not worse as others fear. Brexit doesn’t change that economic challenge- keeping the economy going. It may or may not make it more complex. It may or may not make it better. But building positive psychosocial working environments is going to be crucial to Britain’s economy, whatever shape our governance and sovereignty will take. Equally, ensuring schools and other public services improve and protect the health of the population will never have been more important.
All of this requires some British sangue froid, as they don’t say on the European mainland.
We have work to do. Even if all around us is flux, we can and should articulate the public health contribution to where and what Britain will be , and the risks and benefits we see in policy choices. As I said above, I may well personally wish we had voted to remain, but the task now is to keep going, and adjust our strategy to the developing circumstances, for the service and the good of our citizens.
Bon chance, mes amis, as they say in Scotland.
I write this in a personal capacity and don’t claim endorsement of any organisation for my views.
Within the last week we had an inspiring letter in The Times (May 30,2016) signed by 30+ HIV agencies in the UK who reminded us that we could end HIV.
The news reached us today that NHS England will not fund PrEP (pre exposure prophylaxis) for HIV, driving a coach and horses through one important strand of that ambition. https://www.england.nhs.uk/2016/05/prep-provision/ Their legal advice is also available on that link. The relevant committee paper is here https://t.co/z0wCcZdW6b
The BBC coverage here is also worth a read http://www.bbc.co.uk/news/health-36421124
NHS England says it took the decision based on external legal advice which said local authorities were responsible for prevention, which means they cannot legally provide it. Their legal advice reads in some sections word for word like the rationale they originally issued in March for not funding it. How very covenient. How very consistent. And how wrong-headed.
I think today’s decision is unrealistic, unaccountable and unacceptable. True, PrEP might not get through a proper rigorous prioritisation process when seen against some other competing priorities. But at least NHS England could put it through one rather than the disappointing exercise with a pre-assumed conclusion staring at us from the report, which we have just witnessed. Isnt’t that why we have a prioritisation process? So reasonable decisions can be made in a reasonable way? (A central pillar of our public law.) The process here seems unreasonable and unaccountable.
I wrote at the time of the original decision in March 2016, in local government chronicle, that this decision didnt make sense in and of itself. I suggested it was a not very transparent way of shunting prevention costs onto local authorities http://www.lgcplus.com/services/health-and-care/jim-mcmanus-the-nhs-has-shunted-hiv-costs-on-to-councils/7003557.articl It seems to me this is about funding and finance, with the veneer of legal restriction to add the barest credibility.
I also suggested in that article that this decision, I am sure, will be being seen internally in NHS England against the background of an enduring and worsening NHS financial picture.
By most accounts the Treasury and Department of are Health trying to grab fiscal control of an organisation which has not only had extra injections of cash but has been allowed to exceed its treasury agreed departmental expenditure limit. Only this week we note that the NHS system planning guidance says NHS provider trusts need to break even, and in almost the same moment the Chief Executive of NHS Improvement, the regulator, admitted he expected a further NHS provider deficit in 2016-17.
We cannot divorce the burgeoning financial pressure on the NHS specialised commissioning budgets from what NHS England is presenting as a rational, considered decision on PrEP and its commissioning responsibilities, whatever their legal advice says. Somebody prove me wrong. And I believe the legal advice to be mistaken.
I think the PrEP decision is wrong for a number of reasons:
First, the economic and prevention case for PrEP is made, here is just one reading of it, http://www.nat.org.uk/media/Files/Policy/2016/Why_is_PrEP_needed.pdf , and it is made well enough to allow investment not only in other countries but in England too. Today’s decision feels like short-sighted disinvestment, not a coherent decision based on a thought-through strategy to end HIV and save both lives and cost to the public purse. It is disinvesting now to reap further avoidable cost, disease, disability and misery later. On any view that’s a poor strategic move.
Second, on the face of it, the argument that local authorities are responsible for prevention seems to me to be an arbitrary flag of convenience which is unrealistic, unreasonable and contrary to existing NHS England practice. There is a massive difference between not having a legal duty to do something, and assuming that duty stops you using any general powers you have to do something. This doesn’t stack up. I am happy to stand corrected but my reading of NHS England’s own advice, documents and practice leads me to these conclusions. But let me explain why I conclude this:
- Are we really to believe that NHS England spent eighteen months agreeing in their own documents that they were the responsible commissioner for PrEP and antiretrovirals generally, only recently to have legal advice to the contrary? And what are we to make of the fact this advice coincides – with scarily serendipitous timing – with the massive financial crisis in the NHS and the specialised commissioning budget? It seems to beggar belief that they proceeded on the basis they were responsible since their foundation without taking legal advice that told them this. Or were those who suddenly achieved this surprising volte face somehow not cogniscant of their responsibilities for the past eighteen months? Are they really constrained in law from acting now to save money later on? On any public policy view about the good of the NHS this is an entirely flimsy and unconvincing argument.
- The legal advice, and with it the argument that local authorities and not NHS England are responsible for prevention, seem to me to be undermined by the prevention focus in the NHS Five Year Forward View. https://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf Are we really to believe that some types of prevention (diabetes) are in scope for NHS England while others that will save like for like as much or even more money for the NHS than diabetes and heart attack reduction are out of scope because of one regulation?
- Today’s position on the face of it seems also to be undermined by the NHS Healthy New Towns initiative.This is a long term (think twenty years of more) prevention initiative which, err, works on helping local authorities plan new towns which prevent illness. Hang on, I hear you say, Local authorities are responsible for prevention and NHS England isn’t, right? Well NHS England seem to be telling us they’re not responsibile for prevention, unless they decide they are and it’s much cheaper than PrEP. The NHS England information on Healthy New Towns is here. https://www.england.nhs.uk/ourwork/innovation/healthy-new-towns/ This is a much vaunted initiative by NHS England. Simon Stevens himself has claimed the idea as his own and as part of the advance of a prevention focused NHS. https://www.england.nhs.uk/2016/03/hlthy-new-towns/ Now, I may be being picky, but Town Planning definitely is a local authority not an NHS England responsibility. Believe me, I am sad enough to have read both planning law and planning guidance and NHS England’s job this is not. But, despite it not being their responsibility, a team of staff are employed, a programme board exists, a bunch of local authorities have bid to be NHS Healthy New Towns and they will receive free consulstancy and support (no cash) all at NHS expense. Don’t get me wrong, I think this is a good idea, done on the cheap and NHS England are the wrong people to be leading it, but nonetheless a good idea. My point is that if this can be justified in legal and policy terms by NHS England (when the economic analysis is, to say the least, aspirational and) when it is clearly the statutory responsibility of local authorities; the conceit that PrEP – which will save the NHS directly millions of pounds – is not, leads me to feel the system seems to have collectively taken leave of its senses. Why wouldnt you prdently act now to save money later?
- There is a strong rationale in the NHS Five Year Forward View on a “radical upgrade to prevention”. It mentions significant health issues causing cost to the NHS. If a lifetime cost of HIV treatment – to the NHS – is easily £360,000 then how does the prevention of HIV cost to the NHS not stack up alongside Diabetes as a ready and achievable win? Apparently “the radical upgrade” has hit a need for debugging.
- The NHS ENgland legal argument conveniently seems to forget both the incidental powers of the NHS and their ability to do things reasonably related to their core business. If they have no incidential powers, then where on earth did NHS Healthy New Towns come from ? If they have no incidental powers, then how is NHS HEalthy New Towns not ultra vires and why aren’t we all complaining to the Public Accounts Select Committee and the National Audit Office that NHS spend on Healthy Towns is ultra vires and unlawful. Again, this seems inconsistent.
- The argument that others could challenge any NHS England on PrEP also seems an entirely cobbled together port of convenience. Does this mean that PrEP manufacturers can now start challenging cancer drugs, or cancer manufacturers specialist mental health commissioning? If we start going down that path we will arrive at unpicking the whole basis behind any NHS prioritisation process. Was I lucky that when I was being treated for a grade IVB cancer the drugs I was given were not challenged by another manufacturer and hence I am still alive? Or is this hiding behind a possibility that – even if it were legally correct – is highly unlikely. And behind this hiding constructed rationale that others can challenge, there remains the fact that in any case NHS England could mount a strong public policy and fair process defence against in the light of challenge. Well, they could have if they had actually applied a process which felt anything other than disappointing and pre-concluded.
Third, we need an NHS which more than ever, for moral, humanitarian, policy and economic reasons, is focused on Prevention much more than it ever has been. Unfortunately that isn’t what we got today. And the idea behind it, that a set of regulations presents the NHS commissioning treatment as prevention when it seems to take a very different set of rules to what other prevention work it undertakes (NHS Healthy New Towns) seems flimsy, hastily conceived and incoherent.
But there are several much more important issues at stake here:
- We have the UNAIDS 90-90-90 initiative http://www.aidsmap.com/90-90-90 and a number of other opportunities including Treatment as Prevention to potentially end HIV. Other countries are moving closer. Treatment as prevention must inclide PrEP and PEP as well as other strategies.
- We need, more than ever, prevention to work for us. Derek Wanless in 2000 predicted that we would get to a point where we would be swamped by preventable illness of all kinds. It seems we’re already where Wanless predicted we would be if we didn’t do prevention well. I wrote in December last year about a proper coherent narrative and plan for Prevention.http://www.lgcplus.com/services/health-and-care/the-government-must-do-more-than-talk-about-prevention-in-healthcare/7001110.article We’re still not there, the NHS Five Year Forward View isn’t that coherent narrative by itself and we have much work to do. We need to get a grip on the spiralling cost of health care. Prevention needs to be embedded across the whole system. On any view which was even vaguely informed by economics PrEP would make sense.
Finally, a key policy aim, explicitly stated by Government, NHS and local authorities is the integration of health and social care, and prevention. This is a major policy agenda. That means everyone has to take seriously how we prevent avoidable death, disease and disability. In what world could ending new HIV infections not feature among many other things as important, seen against this policy priority? As Inside Outcomes (@InsideOutcomes on twitter, http://www.insideoutcomes.co.uk) tweeted this evening “A demarcation between prevention being Local Authority whilst the NHS is purely reactive seems contrary to any sense of decent integration.” Well put.
What great dangers we are in by these unhappy positions. And what entirely preventable ones. Whither the radical upgrade?