Like many of our readers, I spend a lot of my time trying to encourage public organisations and service providers to reach out and involve more people in their decision-making, to go beyond the people they normally hear from. People want to be involved and so you have to involve them, I tell them. How useful to have this view supported by Hands Up and Hands On, a recent report from Consumer Focus and Involve looking at localism and community empowerment. An impressive 82% of those surveyed agree that “people need to have more say in what is happening in their local area beyond local elections”. Oh, but hang on a minute! What’s this?
“However, the support for a greater say does not necessarily reflect a personal appetite to do more, with just 28 per cent of people saying they’d like to have an input in influencing local decisions (rising to 38 percent for parents of children under 18) whereas 71% say they are not interested“.
Not interested? How can this be? But perhaps it is true. Perhaps loads of people really are not that interested. It is certainly my experience as a school governor that whilst some parents will jump on you as you try to sneak out at 9.05am, many more when you talk to them, will be pretty happy with the way things are going and not that bothered about what the governors are getting up to in their name.
Where is everybody?
My daughters’ school is currently carrying out a consultation on whether to federate with another local school. So there I was a couple of weeks ago sitting on a little plastic chair in a circle in the school hall with my head on one side using my best listening techniques when it struck me as it always does on these occasions that whatever these vocal and articulate people were telling us about what they thought, we really were not getting a full cross-section of the views of the wider parent body. The total number who had attended our various consultation meetings represented about 5% . Of course, they are a great bunch – thoughtful, challenging, committed to the school, capable of being a bit stroppy from time to time but that’s all to the good – critical friends, the grit in the oyster, the Usual Suspects. But they are a very small subset of our parents and we have no idea of how representative of the views of the other 95%. Where was everybody else?
Frankly, they don’t give a damn
There is nothing unique about this scenario. The same could be said of pretty much every public consultation or user meeting that I have ever been to. Often at meetings like this people will tell you that there is great discontent out there somewhere. They are here to speak for the unhappy silent majority. But when you ask why these people don’t come and talk to you, either at the meetings or anywhere else, they tell you it is because they don’t see the point – and they don’t think it will make any difference. So which is it? Is it just that they are happy with the decisions that are being made on their behalf and frankly have loads of other things they’d rather be doing with their time or are they sitting in their kitchens nursing their wrath to keep it warm but too disillusioned to email, or talk to us, or come to a meeting or fill in the consultation response form? We would really like to know, but how do we find out?
Perhaps we need to accept that there will always be a pretty substantial group of people who really are not that interested in getting involved. And what is wrong with that? We are all entitled to say there are things we don’t give a damn about and let the state get on with its job.
How to catch the low hanging fruit
Nevertheless there is still the group that sits between the 5%-10% we hear from so regularly in and the reported 28% to 36% who do want to be involved but are not.
The report helps to highlight what is putting them off. So here’s our take on how to get to grips with their top five “barriers” to involvement.
- Lack of information – engagement mechanisms appear to be invisible. I’d say we need to find out what really works - and what doesn’t – and decide how we measure success or otherwise. Posters and PowerPoint presentations in draughty halls may tick the boxes but won’t really do much communicating. Word of mouth and personal social contact must be a big part of the answer and we need to find ways of measuring our efforts and our successes in this area.
- Lack of time (and fear of being sucked into the time and good-will eating machine that is the world of volunteering and involvement – my words not theirs). We need to be really clear about what we are asking of people; make good use of their time by sticking to timetables, running meetings properly, conducting and enabling conversations so everyone gets a say, ending things on time and not asking favours of people who are already doing too much.
- Lack of faith in local authorities – (which could presumably be extended to any local provider). Trust is the holy grail. But it takes a long time to develop it, especially if you are starting from a low point as many are, and it can be destroyed in seconds. The development and nurturing of trust should lie at the heart of every single contact. Don’t insult people’s intelligence, and don’t patronise them and don’t ask for their views if you have already made up your mind.
- Fear of the usual suspects. Are the people who come to meetings thinking they are standing up for the down-trodden, “silent” people actually the very ones who are putting them off in the first place? Should we politely ask them to leave? Probably not, though it is sometimes tempting, but we might have to ask them to be quiet and listen for a minute. We need these people working for us: they are key networkers and influencers in communities, whether we like it or not, so how do we make the most of what they have to offer? And we also need to create some “safe” spaces in which we can talk to the people who are less happy about standing up in meetings or manning the barricades.
- Lack of return on investment – working hard for a desired result and not getting it puts people off . To some extent this may be inevitable. People engage when it matters to them. When the battle is over they are likely to move on, especially if they have not got what they wanted. But is it possible to get people to appreciate the process itself and see it is fair and worth being part of even if they don’t get exactly what they expected out of it?
The Health Select Committee, whose activities we have been following with interest on this blog, is sitting this week to look in more detail at the arrangements for commissioning set out in the new Health Bill. This morning’s session, which you can listen to online, focused on public accountability and we were delighted to be given a chance to give oral evidence.
One important feature of the MAC partnership is that all four partners are actively involved as lay people themselves – not just talking the talk but walking the walk too. And not just in health but in schools, transport, parks and even a residents’ right to manage body.
So it was with this combination of theory and practice in mind that I joined the table in Committee Room 17 today. What can those of us with years of hands-on experience of trying to make public engagement work add to the debate at this stage in the Bill?
New structures – a triumph of form over function?
Inevitably the conversation focussed on the structures and hierarchies of accountability as set out in the Bill. Who is answerable to whom and for what? How we will know if it is working? Chairman Stephen Dorrell said he felt giddy on behalf of the GP consortia who stand to be pulled in numerous different directions by the national Commisioning Board, the local Health and Wellbeing Board, possible Overview and Scrutiny and (lest we forget) the patients and the public. And certainly the Bill does nothing to clarify these arrangements. I doubt it is just the GPs who are feeling confused and bewildered.
Are the people up to it?
The discussion also entered classic patient involvement territory as the committee grappled with whether patients were really able to discuss issues more complex than the patterns on the wallpaper. Does the wallpaper matter? Yes, it does matter to patients if they have to spend a long time in your waiting room. Can patients rise to the challenge of higher level debate and involvement? Yes of course they can if it matters to them, if they are given the information they need, if they are asked the right questions and above all if they can see that they are making a difference. But those are big ifs. If these things don’t happen, they will walk away and probably tell their friends and neighbours that it was a waste of time.
So what is still missing from the Bill?
You can judge for yourself how well I put over our arguments but this is what I wanted to get over:
- We need a clearer distinction between patients’ involvement in their own care and patient and public involvement in decision-making. They are separate in many ways but they are closely inter-related. The learning from patient involvement in practices should be aggregated up to consortia level where it should be seen as important part of the intelligence on which strategic decisions will be based, not least commissioning decisions.
- We need to start thinking not just “No decision about me without me”, but also “No commissioning for me without me”.
- We need structures because they provide clarity but structures alone won’t make for involvement. Form must follow function. We need leadership, a change in culture, a change in behaviours and an understanding of patients as customers and the public as the moral owners of the health service.
- We need to ensure penalty-free participation and place a real value on what people bring to them in whatever from they bring it.
- We need good, well-trained lay people at all levels but the model should be “bottom-up” involvement. Start where the people are – in practices, in community groups, in the voluntary sector and go to them. Don’t wait for them to come to you. Patient participation groups may be useful but there are plenty of more imaginative ways of involving people. The purpose of involvement is to involve people and different people will get involved in different ways.
- We need to acknowledge that none of this will happen unless the capacity issues are addressed. Involvement of patients and the public in commissioning should be central to the business model in consortia not an add-on. The people who are getting involved (patients, public, lay people) need recognition, training, support and, above all, to be able to see that their input is making a difference.
- We need to find new ways to recruit new people including people who can help us understand how to overcome health inequalities.
- We need leadership: clinical leadership, managerial leadership but also lay leadership which we will find out there among the existing lay world (a world we urgently need to map), in the voluntary sector and in places we have not even dared to look yet.
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.
Have you noticed that PPI is being eased aside by many NHS bodies in favour of PPE? The “patient and public” (PP) part is unchanged, but in the new rubric “E is for engagement” and “I for involvement” is falling off the page. We should be concerned if the “I-word” has been waylaid in the corridors of Whitehall in favour of “engaging people and communities” . Engagement and Involvement aren’t interchangeable.
However it might be dressed up in the latest policy couture, “engagement” implies a process of enquiry initiated by the NHS when and how it chooses. “Involvement”, in contrast, implies a sustained, continuous and co-created process. Picture a gaggle of patients and members of the public hanging around until the NHS decides to engage with some of them for something specific in order to harvest their views for its own uses. That is a relationship based on dependency, status and power and it won’t do for a user-led NHS. It doesn’t encourage either health literacy or enthusiasm for doing it again. You may ask what’s in a word: in the case of ”engagement” vs “involvement” the answer is rather a lot. If PPE is now DH-approved will we see a rebranding for the NHS Centre for Involvement and the National Library of Health’s PPI specialist section and a host of other respected and established sources using the “I-word”? I sincerely hope not.
It isn’t that engagement is wrong, just that it is insufficient on its own for the purpose of influencing commissioning decisions. Sustained involvement is the key to this. PCTs needs to develop processes to ensure they listen to patients and the public as they shape ideas for new service delivery models. Can they be assured that service users, carers and the public are with them on the journey of service re-design as they develop service specifications, consider tenders, and monitor contracts? If not, they are at risk and cannot demonstrate their accountability to the moral owners of the NHS – that’s you and me.
Here is an excerpt from a PCT policy that does understand the linkeage between involvement, engagement and communications:
Throughout this document we refer to involvement, engagement and communications for patient and public empowerment. “Involvement for empowerment” is the overall objective; engagement is an aspect for specific purposes, including consultation on specific proposals; and communications is the range of techniques and tools used to interact with people, listen to their views, understand their feelings, communicate them appropriately and feed back to them what they said and what we are able to do with this intelligence. The result of this is helping people feel that they are continually involved in our business.
Whatever you call it, If “involvement” doesn’t positively influence commissioning then it is a sham. So why make it harder for ourselves by pretending that “engagement” will do it all? Achieving sustained involvement is difficult, skilled and resource-intensive work, but it is an investment we cannot do without. I am reminded of the comment attributed to ”Red” Adair the legendary oilfield firefighter: “If you think hiring an expert is expensive, just wait till you find out how expensive hiring an amateur is.”