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?

 

 

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