PrEP for HIV…now what?

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

What’s next?

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.

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When suicide touches us…the personal and the professional

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.

Why I’m not pessimistic about councils’ response to vaping in the workplace

This past week has seen a continuation of different aspects of the debate about e cigarettes.  Neal Roff’s helpful and thoughtful blog for people new to using e cigarettes http://stormchildsblog.blogspot.co.uk/ was published.  And the equally helpful UKCTAS report on a depressingly “bad science” World Health Organization position statement was published http://ukctas.net/news/commentary-on-WHO-report-on-ENDS&ENNDS.html

But I want to turn to the report published over the last few days by  freedom to vape¸ http://www.tfa.net/freedom-to-vape/  a campaign of the Freedom Association http://www.tfa.net/about-us/

This report details the results of responses from local authorities to Freedom of Information Requests about vaping and smoking policies, sent earlier this summer.

“Councils ignoring PHE advice”

The report headline on their twitter feed says “87% of councils ignore Public Health England advice” on vaping being treated differently  You can read their comment posts and the report here http://www.freedomtovape.net/new_report_from_freedom_to_vape_87_per_cent_of_uk_councils_are_ignoring_advice_from_public_health_england?recruiter_id=107

Separately, another blog called vapers in power has published a blog linking to the “write to them” website encouraging people to write to local councillors about their policies https://vapersinpower.wordpress.com/2016/11/06/changing-how-your-council-sees-vaping/

Meanwhile, Simon Clark of FOREST has also written about this campaign on his blog http://taking-liberties.squarespace.com/ giving a different take.

Finally,  a report claiming – implausibly in my view and that of several lawyers I have spoken to – that councils are using “illegal” vaping bans was featured in The Mirror on 5th November http://www.mirror.co.uk/news/uk-news/illegal-vaping-bans-mean-third-9204911

Helping or hindering?

Transparency is always good, and indeed it’s helpful for citizens to write to their elected representatives giving their views on issues like this. I also note that the transparency of councils in Freedom of Information requests is far greater than the transparency of some agencies commenting on this, and the story is being used by some to bash councils and public health. I think that will prove counter-productive and some councils at least will decide not to tread on what feels like an increasingly fractious and flammable path, even if they can see good at the end of it.

One DPH recently told me anything they say positive is met by some people on social media – who really don’t represent vapers but many folk wouldn’t know that – with tweets about them being evil and how public health and tobacco control want shooting.  And then we wonder why public health folk are keeping their heads down in this debate.

The FTV report, while useful, doesn’t tell the whole story

There are several reasons why I don’t think the latest freedom to vape report tells the whole story. Doubtless some will disagree but let me list my reasons why:

  1.  The PHE report which contains guidance for workplaces https://www.gov.uk/government/news/vaping-in-public-places-advice-for-employers-and-organisations was only produced in July 2016.  The Freedom to Vape policy report was issued this past week. That’s just over three months between PHE guidance and the FOI report. The idea that most or even some councils will have considered, read and changed their policies on workplace vaping in that period is optimistic in the extreme, to put it mildly, given everything else they have on.  The Freedom to Vape report can’t be taken as more than a snapshot of what the position was at the time of the FOI. For many councils this will be in a queue of issues to deal with, and breaking even will be top of the list.
  2. How can I say that?  Because I know personally of a number of local authorities who are currently in discussion, or drafting revisions of policy and using, among other sources, the new PHE guidance and work from CIEH and others as a support. We are currently working on ours. I’ve commented on a few, and indeed many have commented on our draft policy.
  3. FOIs are an industry. Most local authorities employ a team to answer them. And I suspect (indeed having had informal discussions I know) that some councils have had their FOI team look at existing policy on the intranet and answer the FOI from freedom to vape. This won’t have captured that nuance. And it wont have captured those authorities where discussions have taken place but nothing is being written yet. The freedom to vape report, in that sense, misses out some work going on.
  4. You may say the FTV report will only miss a few local authorities doing positive policy development.  But local authorities tend to be pack animals. They watch and learn what others do and follow those they think are best, especially in an uncertain area.  And I know from speaking to people across the country that this is exactly what’s going on here. The few will shape the response of the many, in time. And three months is not enough for that to happen.
  5. It will take time, because there is no statutory duty on local authorities to do this, no policy obligation to do it either and the PHE guidance isn’t binding. Local authorities have discretion here and the key for people who are pro e-cigarettes is to help councils and support them use evidence and guidance sensibly and wisely. Frankly, the state of this debate will make some councils wish to exit the debate because it begins to look like a thankless low priority task when they’re about to fall off a financial cliff.
  6. Given everything else on the corporate agenda of councils (finances, social care, moving to business rate retention, devolution and so on) we need to find ways of making it easy for councils to do this. No amount of opprobrium and campaigning will make councils prioritise this if they think all they’re going to get is noise and hostility – even if it’s only from a few and the intention behind this report was about doing some good for peoples’ health.
  7. Several multinational tobacco manufactures have developed new, potentially risk reduced tobacco products which heat the tobacco but do not burn it. The Committee on Toxicology has been commissioned to evaluate the available evidence and at least some councils will probably  want to await this report before making any definitive statement or revision of policy.  Independent evidence on this latest development is extremely scarce but a study by the Dept of Public Health at the “La Sapienza” University of Rome suggests that it may be more appropriate to treat these products like e-cigarettes than to treat them like smoked tobacco.  What is likely is that councils, given everything else on their agenda, will not want to revise their policies several times within a year.

But there is a wider issue here, surely?  Why focus on just councils?  What about NHS, civil service, other public sector and commercial and NGO/third sector employers?  From what I can see and the discussions I’ve had with local employers, many of them don’t seem to have moved very far since July either. That’s because this shift will take time. The HR world is still in many places working out what it means in terms of employment law and local workplace policies and contractual entitlements.

Don’t just dismiss the FTV report

There will be some who dismiss the FTV report as a hostile publicity stunt, done in haste and poorly thought through. That would be a shame. And that’s a line I am neither going to believe nor support. The report was done by people passionate about the benefits of e cigarettes, I believe done for good intentions, and it does give us a snapshot of where councils are at and where the opportunity lies. The task now is supporting the HR community with getting on with this.

Time to re-orient how we debate with one another

I worry that there is a danger that some councils will see the report through the lens of some quite frankly hostile social media coverage (some from people who don’t like local government anyway) and decide they will wait and see what others do rather than trying to change things and get even more opprobrium.  To that extent, there is a real possibility that some of the social media coverage around this may backfire.

There is a whole discussion about people saying public health and tobacco control are fit for nothing, well I’ll address that another time.

Some factual corrections to the recent debate

There’s also some factual things to correct here:

  • Media reports that PHE advocates vaping rooms are not correct.
  • PHE has avoided prescriptive guidance and has proposed 5 criteria to help form local policies. The fact they have avoided prescriptive guidance means employers have to rely on their own interpretation of the law and their local contracts. The idea that most or even many employers will manage this between July and end of October is a triumph of hope over reality.
  • A conversation with a knowledgeable employment lawyer this morning told me that they and their legal colleagues have met with derision the media claim that local authorities are acting unlawfully on this. As someone who has worked in HR, I personally cannot see the legal claim for this. Employers remain able or not to consider whether or not to allow vaping.
  •  Establishing a right to vape in law will be very difficult, and would undoubtedly need legal precedent

Where next?

The adoption of the PHE principles will take time. We’ve been working locally on our policy for several months. That wasn’t reflected in our FOI response to this. This is not cause for anger or depression.  Nor is it cause for trading insults. We need to take the heat out of this debate.

There are lots of challenges lying ahead in developing and taking an evidence-based approach to welcoming e-cigarettes and similar devices. Setting to each others’ throats or “bigging up” an issue as a legal one when it isn’t – at least not in the way some folk report it – is not a recipe for elucidation.