When Elephants Fight: Time for honest discussions (with patients and citizens) about the NHS

This blog was first posted at http://www.nhsreform.co.uk/blog/2017-02-07/nhs-reform-time-to-learn-time-to-listen-time-to-work-together

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When you don’t talk about difficult things:
1. The real problems fester and grow.
2. When the festering hurt gets too much, things boil over and everyone shouts.
3. The ones with the loudest voices do the most shouting.
4. The most vulnerable voices get excluded and are hurt in the overall process.

There is an African proverb: When elephants fight, the grass gets trampled.

It is more courageous to be open and vulnerable than to be fixed, more wise to stay at the table of difficulty and hear people out, than to let things fester or to shout. That is why I have joined a little group of kind people who want to hold a space for us to talk about NHS reform. See http://www.nhsreform.co.uk/blog/2017-02-07/nhs-reform-time-to-learn-time-to-listen-time-to-work-together

The NHS is a hot topic, yet few people are holding a space for dialogue, reflection, listening, questioning, exploring…. There is too much belligerence and toxicity around issues of access, safety, funding and ideology to allow for that.

The NHS Forum wants to change that so we gain richer insights into the issues and can find solutions together. It seems a brave non-partisan attempt to find ways to model partnership working in policy. I wish it all the very best and am proud to be invited to be part of its editorial board.

However, if your thing is to shout, or if you want to insult people because you do not like the ideas expressed, please go somewhere else. The world Is sufficiently febrile at present without us adding to it.

Let’s put things another way: After many years of chronic tension in my family, one day my mum and dad argued. Two days later they divorced. I was 14 and tried to facilitate, to no avail. Stupid really in hindsight. But there you are. Then, after many years of suppressing my own anxieties, I had a breakdown.

The pattern is clear. I don’t want the NHS family to divorce. Or for the children (patients, carers) not to have a voice, or to have a breakdown (suffer worse care).

Can we turn down the heat?

I have written about the Junior Doctor dispute and how the belligerence on ‘both sides’ created a toxic atmosphere that further poisoned relationships and any opportunity for sensible dialogue. What could have been an opportunity to discuss what different people meant by ‘safe’ working, or to explore whether it is feasible to have a seven day NHS (and what people mean by the phrase) was drowned out. This is understandable to some degree – careers were at stake, not to mention patient safety. But the real issues went unexplored. And people lobbed bricks (verbal and metaphorical) at each other.

It seems futile for any side in a playground fight to point to the other or complain to the teacher, ‘but they started it’. It all grew wearisome. And things continue to fester.

I have also written here about how the ‘independent sector’ (let’s call a spade a spade – the private sector) needs to come clean about its own shareholder interests and about accountability issues, as well as lauding its ‘customer focus’. Maybe then we can have a grown up debate about the role of the private sector in the NHS.

What's to talk about? Lots!

There are plenty of interesting issues to explore:

• What should be done about the pharma industry that contributes to research, yet has secretive pricing deals? That contributes to economic growth, yet has a pretty dodgy record when it comes to openness around safety of some of its products?
• When we talk privatisation, are we talking about the private sector not being allowed to support commissioning (that may not affect the NHS being free at the point of delivery, at least not directly) or do we get more worried only when the private sector charges for delivery of care?
• When the private sector steps in to provide services, does that ease pressure on the NHS, or add to it? And what, if any, should be the role of private insurers?
• And some intriguing issues at the edge – aren’t GPs part of the private sector? Does that matter? What do we do about the many who defend the NHS, yet do private practice? Where is NHS dentistry in all this? And opticians?
• What do we do about social care every time the NHS gets its additional emergency money (which it has often done, to the exclusion of the less powerful voices) who want more prevention and public health?
• Is it really case of the NHS just getting more funding? More beds? More this, more that? Is the only alternative model – the only one that gets an airing - the American one? What about learning from the Nordics? Is that a valid option, or is our tax-based system still the best way to go?

All worthy stuff to explore. But none of this is aired beyond the arcane world of policy think tanks. I believe this is partly because people seem to be entrenched, and any attempt to explore are drowned in a chorus, redolent of the intractable mind and voice that shouts ‘if you’re not for us, you’re against us’. Or by a frenzied media unable to move beyond blac and white?

I bet a few people reading this will accuse me of ‘softening’ a pro-NHS stance, by even raising the questions. Well, questing for truth and justice is my passion – and if that raises difficult issues, so be it. While we hide behind flags and banners, the NHS is being dismantled by stealth.

Moreover, while the stealth continues, secrecy affects another area – my real passion: patients, service users, carers, communities and citizens being included as partners in decision making.

Meanwhile, NHS England is at it too, ducking the real problems and quashing dialogue, mainly out of fear. And foisting problems on cash-strapped commissioners, who foist it onto providers, and so it goes on. Secretive deals are being done in STP land. Decisions about closure of hospitals (aka ‘reconfiguration’), ‘decommissioning’ and ‘prioritisation (aka ‘rationing’) will take place behind closed doors. And we, the children (aka those of us who pay for the system and use it) have no voice. See my blog on ‘Secret Transformation Plans’.

I also know that, behind the public scenes of ideological defiance, all political parties share the same worries – that health services are under threat because of limited resources and changing demographics.

Patients and Citizens as Partners

The most significant issue for me is that I see a new generation of ‘patient leaders’ – people with experience of life-changing illness, injury or disability, who want to change things through working in partnership – ready to help, yet their expertise ignored again and again. The very people who are most affected – the very people who can help most – are ignored. This is about power.

You would not expect a ‘women-centred organisation’ led entirely by men. Yet our ‘patient-centred’ NHS is run entirely by clinical and managerial leaders at executive level. We have a few token ‘non-execs’ and a smattering of ‘PPI leads’ and ‘lay reps’. But this is not real accountability, nor does it signify any sort of real shift in the balance of decision making that might help the NHS out of its fix.

And, yes, at local level, things are changing a little – the rise of experience-based co-design, asset-based community development, online dialogue, patient leadership, etc.

But at policy level, very little. NHS England, and in particular, Tim Kelsey ignored patient voice during the care.data fiasco. The BMA and Hunt ignored us during the Junior Doc dispute. Simon Stephens ignored us when STPs started…

Maybe it’s time that patient leaders play the grown ups? Because the NHS family has become dysfunctional. And the dismantling of the NHS is too serious to be left just to those who shout loudest.

Let’s talk. Let’s listen. Let’s explore. Let’s have patients, carers and citizens at the table – for real. Let’s find solutions together. Come join us?
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David Gilbert is a mental health service user, with 30 years experience in the NHS, and in the field of patient and public engagement. He is currently Patient Director, Sussex MSK Partnership (Central), the first such role in the NHS. He is on the editorial board in his personal capacity, and these are his personal views.

If you liked this blog, there are plenty more at www.futurepatientblog.com

(c) David GIlbert 2017