[Image: Wellcome Library, London]
Between Christmas cake and 1001 leftover turkey recipes, I’ve
been mulling over the Mazars review of deaths in Southern Health NHS Foundation
Trust and how they were (not) investigated (see https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf
). In particular, I’ve been wondering: 1) whether the NHS England/DH attempt to
shut this down by publishing it within a couple of hours of parliament going
into recess before Christmas will be successful; and 2) whether the squawks of
outrage press released by various charities will be quietly shelved for ‘business
as usual’ at the usual DH and NHS England tables in the new year.
In my own mind, I’ve never really resolved the
insider-outsider conundrum. Is it better to be working ‘on the inside’ to get
something done, even in profoundly unpropitious circumstances, with all the
attendant compromises involved? Or is ‘influence’ a comforting illusion which
can begin to look like collusion? Can shouting from the ‘outside’ ever be
effective rather than just being self-counsciously virtuous, or does it alienate people on the ‘inside’ who might otherwise be
receptive to what you’re saying? Does withdrawing from the insider table send
an important message, or just leave a smaller number of people round the table
to carry on without having to hear from dissenting voices? I’m also acutely
aware that this is not a choice that is available to pretty much everyone with
learning disabilities or their families, who are shut out from meaningful
decision-making.
For me personally, the Mazars review and how DH/NHS England
have dealt with it represent a fundamental failure at a crucial moment. I do
quite a lot of work with DH and NHS England as part of my work for IHaL, the learning
disabilities public health observatory funded by Public Health England. I also
have ongoing contacts with DH and NHS England as an academic, trying to offer
advice around what the available research evidence says on a range of issues.
The day after the Mazars review and the responses were
published, I sent the following email to a colleague in DH who had asked me to
be involved in something as an academic – I sent a very similar message to
someone in NHS England too:
Dear
Thanks for your message – I was
waiting until I saw the Department of Health response to the Mazars report.
Personally, how DH responded to the Mazars report was a crucial barometer for me
of whether DH as an entity can be trusted to stand with people with learning
disabilities and families when the going gets difficult, and whether DH are
prepared to address the fundamental discrimination faced by people with
learning disabilities. I’m gutted to find that I personally think DH have
catastrophically failed. This makes me feel that, in terms of national
initiatives to transform care for people with learning disabilities, I have no
confidence in the capacity of DH to do this properly.
If I am required to take part in
this process as part of my Public Health England responsibilities then I will
do so, and to the best of my ability. If you’re asking me to do this as an
academic, then I must say no. I can’t continue with ‘business as usual’ and
collude in processes that I don’t have confidence in. I’m gutted to say this,
and this isn’t at all to question your personal commitment and capacity to do
the right thing which I respect greatly. I just feel that the response to the
Mazars report has shown that the DH system as a whole isn’t ready to do what
really needs to be done.
Best wishes, and take care
Chris
Depending on how you look at it (and I oscillate wildly in
how I think of it myself), this is anything from foolish through mushy
compromise to fatuous virtue signalling (compounded by putting it in this blog).
My real point here is not to signal this as a good decision,
or to encourage other people to do something similar – there are a wide range
of perfectly defensible and reasonable decisions that could be made. My point
is simply that I would ask other people, and particularly big and influential
charities and other organisations, not to unreflectingly carry on with ‘business
as usual’ but to ask themselves searching questions about: 1) What their
strategy is about engaging (or not) with DH and/or NHS England (and ADASS too);
2) What their rationale is for their strategy; and 3) How would they know
whether their strategy is successful or not, and whether there are any
circumstances under which their engagement strategy would change? And I would
want big charities and other organisations to make their decision-making
process public.
I’m not a natural ‘boat rocker’ (ha!) and writing this post
feels uncomfortable (which it should do). I’d be really interested in people’s
opinions.
thank you again Chris. You have hit several nails on the head, as usual, and it is a brave post. I guess it is a case of asking, once again, what prompts major change. For what it is worth, in the absence of a revolution, it has to be a combination of forces. Take the response to the revelations of the scandalalous abuse at Ely Hospital. It took a tenacious press (the News of the World of all things) picking up the baton from families and whistleblowers who had not been listened to. But it also took politicians who were willing to lead a constructive response, initially to commission an enquiry (led by Geooffrey Howe), and a politician (Richard Crossman) who was willing to exercise leadership. This led to the 'Better Services' White Paper, which was honoured by the incoming Tory Government, and laid the foundations for deinstitutionalisation, and the creation of Local Authority residential, day and respite services. It did need insiders to be committed to changing things, and to listen to academic voices which told them that large institutions were just wrong - like Jack Tizard and Peter Townsend. We do not have that insider leadership, and it is hard to see where it might come from in the present political constellation. Until one appears, or can be cajoled into taking on the mantle, I suspect you are better off outside, working at creating the ideas which might inspire a creative and honourable political response - like Tizard and Townsend did in a previous generation.
ReplyDeleteThanks Jan - these are wise (and comforting) words. Finding ways to support people who are doing good stuff and campaigning seems the way to go.
DeleteThank you for sharing your thinking, Chris. These decisions are really hard. Translating into other spheres doesn't always work, but can sometimes help me to think about things in a different way. So, was it right for the government of the day to talk to the IRA? And vice versa? My dad was a diplomat and I still tend to the 'jaw jaw' school of thought; if you're not having the conversation, I think the chances of influence are reduced. Where to draw the line is a very personal decision though
ReplyDeleteThanks for this Alison - interesting analogy! I don't think I'm quite at the War War rather than Jaw Jaw stage - it's partly a question of where to put my (limited, I'm quite lazy!) energies, and the extent to which formally supporting organisations which don't deliver becomes a waste of time and a way of co-opting different perspectives.
DeleteThere have been good voices trying to tell government level what is needed though I don't believe that National Charity CEOs are the necessarily the best to be there or the best informed. Some may even be too remote from the ground floor with their staff not always telling them how it is. Certainly my impression of Government is that they won't listen unless it suits their agenda and it seems harder and harder for people to speak out. In the last few years I've come across some good individuals who've been punished for speaking out, within as well as outside public services; basically got rid of - via health due to stress and pressures of frankly senior management bullying/fitting them up, or leaving or being sacked. I suspect that too few in Government know the real situation, seeming to suspect efforts to tell them as some kind of liberal woolly thinking/ leftish propaganda, and preferring to believe the world comprises occasional welfare exploiters which fits their preferred view of the world and doesn't get in the way of their objectives. However, they also hesitate to challenge the powerful business interests which too often keep them in power and in Government. Am I alone in thinking that noone wants to upset the businesses of those running A&T units or the medical model power bases that gives a comfortable unit to the medics and a good investment return to hedge fund investors? This model also feeds the very prejudiced stereotypes of mad and bad, and denies the reality that it's this 'disposal' that exacerbates people's difficulties.
ReplyDeleteTo move this unwitting culture surely means educating people in power to know that there are real proven alternatives? Do they imagine people in institutions are different from those well supported in the community? How do we get them to understand and feel it? The N/West Regional Health Authority resettlement from the late 70s of people back into the community involved people on the inside with principled practice and some faith but also front-funding, with health savings and land sale getting back the investment longer-term. Politically it was seen as a way of saving money. It included people who were by any stretch felt to be dangerously challenging, but it worked because there was a real will and belief, and strategic investment in community specialist services and training too. Yesterday out to lunch I saw a man who 20 years ago had been identified as too high risk and dangerous, and with a staff who'd been one of his first staff.All the doubters were proved wrong and he now has a life which was denied him as a so-called dangerous incarcerated man all those years ago.
However the multiple (costly) Health reorganisations have sucked resources back into the general health service leaving only a small residual community health service unable to respond quickly to any crisis. It is doable but needs real will, understanding and resources and so those voices at risk of giving up. Politicians need to listen to those who do know, the evidence including from people with real lived experience of it and families who know what might be best for their relative. Can we persuade the Government and NHS to listen - that maybe we have the experience to know what can work and has done? In a context of cuts we should fear the development of new institutions in the community though. The North-West Regional self-advocates see the move to "clustered" flats as disguising the new institutions of the future with reduced staff support shared trapping people in isolation in their flats. They went as far as to say it's tomorrow's Winterbourne View... It must be done right and our community support needs to stop the continued removal of others to A&T units. Good for you Chris is speaking out - I hope they listen as we need people definitely on the inside if they will speak out and stand a chance of being listened to.
Thanks very much for this Rose. I agree that there is a political (small p), and commercial/business/industrial dimension to this that is really important but largely hidden and uninvestigated. The carve-up of accountability into meaningless chunks in the Health and Social Care Act has accelerated an already existing process of cost-shunting/buck-passing between different state 'commissioning' agencies, even if people's lives are worse and the total cost to the state is greater. As you suggest, the cui bono question is the one to ask.
DeleteIn the end these decisions make themselves. Other people's opinion, or the most effective path to choose, doesn't come into it. You know what you can live with. That's why you wrote those emails first, then asked afterwards.
ReplyDeleteHappy New Year!
Blimey, you do live up to your name (the wise bit) - didn't think about it like that but you're right.
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