Unrealistic, unaccountable, unacceptable: NHS England and #PrEP

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:

  1. 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.
  2. 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?
  3. 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?
  4. 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.
  5. 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.
  6. 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:

  1. 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.
  2. 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?




Self Care, Resilience and Self-Emptying: thoughts

There’s so much I could blog about at the minute, but there has been little time.  I want to blog about the debate polarisation going on in diet and tobacco harm reduction and whether this polarisation helps the people we are supposed to be serving (remember them?)  Another time.

But a few things have led me to blog about self-care and self-emptying.  It’s year of volunteering from today, and I’m offering some resilience and self-care sessions to volunteers and leaders as part of the year. I’ve been doing this for some time now.

I am, outside work, someone who volunteers. From cleaning the church I am part of to being a Trustee on several charities to being an advisor of others.  I love it. It usually energises me. There are times when it doesn’t (10pm in a finance committee and we still can’t agree on whether health and safety allows us to replace our own ceiling lights), but they are rare.

My interest in public mental health

I never really thought of myself as having that much more interest or much of a role in things to improve the mental health and resilience of our population than anybody else.  And I look back and realise that this was not really doing what I could have done. One of the people who changed that was Executive Member for Public Health. She has a passion for good mental health that you can almost touch. And it’s energising. And the past three years of reflection and action spurred on by her prompting have suggested to me a number of different dimensions of the mental health of our population that I have often not thought through until more recently.

Similar challenges, different situations

In the last two months, looking through this public mental health lens, some similar issues have been thrown up by five different groups for whom I’ve delivered some sessions:

  1. A group of social and health care workers (clinicians,managers and volunteers) who all want to understand their faith and their work integration better. Part of the answer for at least three of them was a manager hostile to their faith or insensitive about their disability. So much for workplace diversity!
  2. A group of volunteer leaders who wanted a session on leadership in public health volunteering
  3. A group of people who have survived the mental health care system and want to lead a public mental health agenda
  4. A really good conference for the International Day against Homophobia on May 17th where statutory agencies and lgbt advocates came together, and I was a speaker
  5. Some people preparing to work out what their role for health improvement is in the Hertfordshire Year of Volunteering, which kicks off today

The issues are essentially about self-care and resilience. They all struggle with it. We ended up in every session spending some of the time I had alloted to talking about it. Usually because stuff in the group brought it to the surface more or less tangibly.

Self-emptying : the good and the bad

A major commonality is they all demonstrate what I call “kenotic”styles of leadership – from the Greek kenosis – for self-emptying.

Kenosis for me given my upbringing is a very, very, VERY Christian concept because it’s what Jesus did – emptied himself out of love for the sake of others – and it’s what so many of my heroes did and still do, whether of any faith or none.  It’s striking how many people – possibly quite unconsciously – engage in this kenotic style. They give and often do not count the cost, because that is what they feel will help their fellow humans. Self-emptying leadership and service (and whether you’re cleaning a floor or delivering training or writing policy you’re leading) is it seems so very common among us all.

There are great benefits to self-emptying leadership. It gets things done. And it can actually be energizing, but only if you have something else replenishing you. From Jonny Benjamin, who – with great benefit for us – didn’t end his own life and started doing enormous good on mental health to the mother bereaved by suicide, aching still from it, who creates the safe space for others to ache and hurt, these kenotic leaders soothe and change and charge the world with their love and concern.

But there are risks and downsides. I speak from first-hand experience. Stress, burnout, not coping. Kenosis can also mean avoiding the fundamental issue at heart (the times when someone tells me “I havent grieved” or “I dont really accept myself”), that well practiced ability to love others into a better place while being unable really to love oneself. And boundaries can go awry, leading from service to abuse of power.

A public mental health issue

Why am I writing about this?  Because it is fundamentally an issue of population mental health. Scientific research (such as there is) on volunteering will tell you it brings benefits but has costs. It can energise and it can burn out.

In a society which owes so much to volunteers, or people in their day jobs who go above and beyond the call of duty, and especially in a year of volunteering, we need to look seriously at some of the issues here. It is a public mental health issue: building resilience rather than building in risk and vulnerability should be a key concern for us.

How do organisations support the kenotic leaders?

I asked the question especially about how employers support those employees who are really “out there” in their leadership changing things. I can think of a muslim colleague, a vaping advocate colleague and a transgender equality advocate colleague who have all taken personal, reputational and other knocks and risks for what they believe is right. How is their organisation supporting them?

So, what do we do about it?

Kenosis is not the only style of service, but for those who get the balance right between self-empyting and being replenished, the rewards outweigh the risks and things progress. For those who dont, stress, burnout, exhaustion and illness can become the order of the day.  So the first thing NOT to do is try to stop it.

I find myself talking again and again these days about how a fundamental part of being resilient in a busy life is to have a self-care strategy: tools or tactics to make sure that you can and do cope and thrive.

I have spent the last eight years doing self-care as part of leadership training.  from future public health consultants to young sisters and brothers in religious life who have just taken their first vows and are thrown in the deep end of service to volunteer trauma counsellors to LGBT or mental health advocates.

There are several pillars to self-care:

  1. Learn to appraise sources of stress and whether they are really stressors (things you dont have the resources to cope with) or whether they can be made neutral or even positive. (Sometimes a deadline is energizing, especially if its the most boring task in the universe.) If they are stressors learn to find resources to deal with them, ask for help, chunk up the task.
  2. Self-acceptance : nobody likes everything about themselves (thats why change and growth is lifelong) but we should all be able to accept who we are. Sometimes this is a major issue. Sometimes it isnt.
  3. A healthy diet, keeping active and getting a good sleep work wonders
  4. the five ways to wellbeing are important. They can also help establish patterns for you
  5. Know your pressure points and weaknesses and know what to do about them
  6. Be gentle with yourself – most of us serve because we need to be needed. recognise explicitly your motivation, work our the positives and risks of those and what you will do
  7. spend some time working through a guide to resilience such as Derek Mowbrays
  8. Work out a rhythm to life. And when it goes wrong, try to bring it back. Include down time and personal time in that rhythm
  9. Share, reflect and refine
  10. your self care strategy will really NOT be the same as anyone else’s. Take what works for you from theirs, but you are not them
  11. Your plan should cover your attitude to life, your way of keeping pace, learning and leading, down time and what for you is your bottom line. For some folk their bottom line is “leave me alone on Saturdays” for others its very different

Doing this in a group, where you feel safe to share, can be a really good exercise.

Dame Rennie Fitchie, the erstwhile Civil Service Commissioner, once said to a group of us that she worked out the demands made on her by a large jar of little blue glass pebbles. One for every day of the working year. And in those pebbles were four red pebbles, which was the number of weekends she was prepared to give up, because her weekends were precious.

For what it’s worth, here is my self-care strategy:

My attitude to life

  1. My motivation is to try to do as much good as I can, for as many people as I can, for as long as I can.
  2. There are only so many things I am prepared to take seriously. Life’s too short.
  3. I will have fun while I’m doing that, and I will squeeze every possible drop of enjoyment out of life
  4. I do have a cynical tendency. I will try to be the kind of cynic who sees and pokes fun at things which are wrong as part of efforts to change them rather than the type who gets bitter and angry, especially when people take the piss
  5. I do like manners and basic courtesy. They cost nothing and deliver much.  And I like them being reciprocated. Nothing is worse than a churl. And while I will try subtly to address this, occasionally I will make it obvious you’re being a churl or are otherwise taking the piss and need to stop.
  6. Whimsy is restorative (see item 9 below.)
  7. I will not beat myself up for failing in any of these.
  8. I will learn from my heroes. St Edith Stein said “the world doesn’t need what you have, but who you are”.
  9. I will regularly switch my brain off for periods of being a kid again.
  10. I am regularly double booked. I cant bilocate so I will do as much as I can and not stress about it. You shouldnt either.

Leading, learning and working

  1. I will never stop learning but I wont worry that I cant keep up with everything
  2. I will not sweat the small stuff. Seriously, I really won’t.
  3. But I will sometimes take delight in the good small stuff (someone buys me a cuppa or the recent issue by ADPH of lapel badges for its members had me almost dancing with joy, which I’m sure came across as odd.)
  4. I will remember in times of frustration all organisations and partnerships are dysfunctional, because they are human. (See point 4 above and points 5 and 6 below.) There is almost nothing that cannot be made worse before it is made better by giving it to a committee or partnership. That is the joy and frustration of being human.
  5. Nothing winds me up more than partnerships where one party wants everything on their terms. Thats a neuralgic point for me and I try to watch it. But be aware that this usually means I will seek every way of evening out the playing field even if you dont like it and it leads to confrontation.
  6. I will sometime tell you where to get off. Especially if you or your organisation are taking the piss. And if I feel you have the emotional intelligence of a doorstep I may do that very pointedly. I expect mature relationships. Deal with it.
  7. will appraise every stressor, and if I dont feel I have the resources to not be stressed by it I will ask for help
  8. I will rely on others and trust them.
  9. I will usually have a plan  B, and a plan C and D.
  10. 9 above and frequently smiling makes people regularly wonder what I’m up to and that can be an immense source of amusement and opportunity.
  11. I will lead with and learn from others and be led by them, I do not know everything
  12. I will get things done. On Monday I will look at what I need to do and on Friday I will look at what I have done.
  13. The “to do list” like death and taxes, is always with us. I will not stress about it

Pace, Health and Life

  1. There is, always, time for a cuppa
  2. I will enjoy the fact my eating healthily and being active gives me buckets of energy
  3. I will remember that the day after leg day and deadlift day when I have trouble walking
  4. I will have a treat/ cheat meal now and again . Especially if it’s chocolate covered or comes in cake form.
  5. The service of people brings me closer to why I am here. I will be energized by that
  6. I will have down time and personal time : every day
  7. I will have a lunch break
  8. I will protect some gym time, prayer time, family time and sad nerdy science fiction time. Nothing gets in the way of these.
  9. I will allow myself to moan and whinge and then remember these principles in case I allow it to get too much
  10. I will be choosy about how many weekends I will be prepared to give up for service/work/volunteering.

The bottom line

  1. I will not apologise for who I am.
  2. My faith is an explicit motivator for me, and a vital source of grace and challenge and renewal and replenishment and I am not going to apologise for that. I’m sorry if that’s a problem for you but it’s the core of my functioning, understanding of life and ability to serve.
  3. Like Catherine of Siena I believe that if we can be who we were made to be, we will set the world on fire.

Anyway, my self care is leading me to a cycle, a steak, a gym session and the cinema. Have a wonderful weekend folks