In his last Reith Lecture, Niall Ferguson asked whether nations can flourish in the absence of a vibrant civil society. He tells us of his efforts to clear the beach in front of his house – a success thanks to the involvement of volunteers well-organised by the local Lions Club. Otherwise he painted a dispiriting and alarming picture of a world where what Ferguson calls ‘associational life’ is no longer a feature of Western society – to its considerable detriment. He quotes in aid of his argument, the wise old Frenchman De Tocqueville who described a world of ‘petty and paltry pleasures’ where our children and private friends constitute the whole of mankind, where the wider connections with our fellow citizens have atrophied. Is this decay of association one of the reasons why public engagement with the NHS is so difficult to get right?
From Citizen Association to Public Engagement
Looking at our blogs since the last newsletter, we can see many of the main elements of successful public engagement which grow out of association:
- access: how do you get into the system to give you what you need? In this case we talk of the new 111 number and deciding who to call.
- information: the body of facts and recorded experience that you need to do a better job – see our article on Patient Participation web resources
- safety: as well the information you need, there is the personal information that you want to protect and keep close – what the dangers of off-shore data storage? How can you be sure that is being handled safely?
- control over what happens to you and yours – here we register our dismay at some early signs that ‘shared decision making’ is going wrong.
- expert help – it helps to have some IT geeks on your side to make sense of the great wash of data available in raw form that needs analysis and interpretation.
Even with this sort of help and advice, we acknowledge the difficulty of creating association and finding the volunteers at the present time. In health services, the problem is particularly acute – the NHS was constructed deliberately in many ways to do all the things that were done earlier by civic associations. The creation of the NHS was in essence the reward for citizen activism, pressure and campaigns for social justice and there should be no surprise that since then the citizens may have stepped back, feeling ‘job done’ – let the professionals take over and rent the volunteer coffee stall out to be run by Costa. Now our view of the set-up is less rosy. We are much more aware of the consequences of setting up a healthcare monopoly supplier, its costs and characteristics – indifference, defensiveness, lack of accountability, producer capture – but how to change things? The citizen participant is understandably at a loss on how to take on the monolith. Will Twitter and Facebook do the job?
The Limits of Social Networking
Niall makes the point that pressing ‘Like’ on Facebook does not clear a beach. But telling your story on Patient Opinion may – if enough of the right people read it. However someone – perhaps the new HealthWatch – needs to pull the data together and create the pressure for change that only massed and consolidated ranks of user anecdotes can contrive. Will the ease of the e-systems – allowing people to do something that minimises any calls on their time or energy – create an interest in moving on and actually walking the beach with a rubbish sack? A Consumer Focus report on collective action in energy markets to get a better deal for consumers, talks about arrangements that harness “inertia – inverting it Judo like from a force that works against consumers to one that is put to work on their behalf.” The internet can provide the means whereby consumers can be effective in aggregate while they remain largely passive as individuals. A new Slackers Charter perhaps but who cares if it works – the lazy shall inherit the earth so long as it can all happen from a keyboard or touchscreen. But there will always be circumstances which call for real people who are present phsyically so it cannot be a complete solution to civic decay. So does gloom carry the day?
Nothing About Us
The latest assault on optimism about whether patient participation can really make a difference – how, where, how much – comes in a brilliant act of diagnosis – billed as ‘A Modern Drama in Five Incompleted Acts‘. This is Nicholas Timmins’ story of the Health and Social Care Act 2012 – Never Again? Just out of interest, I searched the pdf for Patient Engagement and variants like participation, involvement and got zero references. True the vocabulary is a little specialised but ‘patient’s voice’ organisation only rated one mention with assorted sprinkles of reference to Health and Wellbeing Board. So much for Nothing About Us Without Us – shorten that slogan to ‘Nothing About Us.’ So how do we dare invite patients to engage with this organisation and its processes?
Visible from Space
We have talked before about the Big Beasts stalking the corridors of Westminster – be it rumours of new institutional arrangements like LINks or as a label for Sir David himself – by way of homage to the centres of power where the politicians play. Timmins’ story has all the vivid power of early raw history as he characterises the ‘re-disorganisation’ of the NHS in different ways – I liked “It is the only change management system you can actually see from space” – a consultant’s perspective – or a welcome re-airing of the Nigel Lawson line that the NHS is “the closest thing the English have to a religion’ – the NHS as the Old Religion. But patient-led? Not a hope – in the clashes of great armies – with the political struggle happening mainly within the Coalition – we are reminded again how little of that debate concerns itself with what we would recognise as the patient interest. The arguments always genuflect in the patients’ direction but there are always more immediate, pressing or sexy issues – money, power, control. I would recommend the account of how the Royal Medical Colleges acting under their Academy umbrella could have stopped the Bill but failed to hold the professions together. It will help you understand how a skilful professional politician operates – albeit let down by the difficulty of herding of such cats with the surgeon pussies breaking ranks first.
Individual MAC Partners have always been participants as well as advisors – the patient liaison group, the residents’ Right To Manage company, the Park users group, the school governing body. This does not make us saints but it does make us realistic – how do we answer the ‘Why Bother?’ question from potential volunteers who want to engage with the NHS?
Can we in clear conscience invite people to exercise their civic inclinations by getting involved in the face of such clear evidence that the big decisions are taken far away from the frontline and that when push comes to shove, the patient army does not even take the Westminster battle field. Perhaps like David Gilbert says that is because they lack leaders.But in the end as Timmins said, patients are not considered because his story is not about health – “it is” he writes “a study in government”.
MAC say ‘Fight Again Another Day – Where You Live’
Westminster may not be the right battlefield for patients. We suggest that they stand and set out their array on a field of their choosing – the local community where their services are commissioned, planned and delivered. We are optimistic that the new structures of health and social care may work because they are backed by the resources of local government. They have both a clear interest in uniting social care and health as well as an understanding of the local representative universe. Can they breathe life into patient participation? Watch this space. Timmins’ at his trendiest, uses as his first sub-heading “The pipers at the gates of dawn” – Syd Barrett/Pink Floyd in case you were wondering. We want to hear the skirl of the patient representative pipe band to sound in your streets where you live (preferably not at dawn). After all when the shouting dies down at Westminster, patients have a health service to run. Down to the beach everyone.
The Moore Adamson Craig Partnership supports user and public participation, trains lay representatives and develops responsive health, care and education organisations. We are ready to work with and support all those who want to make sense and a success of the new structures of patient and public engagement within the new arrangements for health and social care commissioning and providing. Feel free to contact us to discuss the opportunities