Particular words mean different things to different people
Who are these different people?
They are probably part, or a product, of the Involvement Industry, developed over the last decade or so, which brought many new people onto the scene describing themselves as ‘experts’ in involving people in service planning and decision making, but not actually practicing, or understanding, ‘meaningful involvement’. They work in a model of involvement that ‘manages’ how people are involved in a controlling, rather than an enabling, way.
But there is also a few who are part of a previously established group of people skilled in supporting people who use services in having a voice and in being heard. This group and their skills grew out of the experience and knowledge of the Mental Health Service User Movement which dates back to the 1980s. These are the few people still in around who understand, and can facilitate ‘meaningful involvement’ and are working to involve people, patients, carers and the public in the decisions that affect them about the services they use.
The NHS now only recognises the Involvement Industry as the experts in the field of patient and public involvement. There appears to be an organisational memory loss that has wiped away any record of the history, or of the best practice and methods, of the equal partnerships that existed, and worked well, between the planners and the patients and public.
What are the different meanings that cause confusion?
The words originally used in involvement date back to the 1969 when Shelley Arnstein created a ladder of citizen participation in her research around how people who she described as ‘have-nots’ could gain some ‘citizen control’ over their lives and a share in the benefits of the affluent society they lived in.
She described the whole process of becoming involved in decisions that affect you as ‘Participation’, with ‘Informing’ as a one way flow of information and ‘Consultation’ as a window dressing ritual involving attitude surveys, neighbourhood meetings and public enquiries.
These words are still used the same way today but not described using her definitions.
She described ‘Placation’ as allowing citizens to advise but retaining for power holders the right to judge the legitimacy or feasibility of the advice. This still happens today but is not given a name, or often acknowledged as actually happening.
She said ‘Partnership’ was power distributed through negotiation between citizens and power-holders and there were shared decision-making responsibilities. Whereas ‘Delegated power’ was described as the power to make decisions where the public now had the power to assure accountability.
Partnership and Delegated power existed between the late 1990s and the late 2000s when the meaningful involvement mentioned above happened with Patients and Carers as full and equal Board Members within the NHS.
The Involvement Industry introduced words like ‘co-production’ implying both ‘partnership’ and ‘delegated power’ and also ‘engagement’ implying ‘meaningful involvement’.
A senior manager may remember the earlier definition of the words used about patient and public involvement and feel confident that valuable information is being collected. But the ‘engagement’ worker may have a completely different understanding of the same words, and carry out the involvement using their 2016 meanings which will mean that less useful information is collected.
An example is the word ‘REPRESENTATIVE‘ which has a history of its own:
- Between the late 1990s and the later 2000s – a ‘representative’ was a chosen or elected member of a ‘reference group’ of people using the same services. The ‘reference group’ members agreed the issues to be taken to the meeting by their ‘representative’, who later reported back to them on what happened and what was said.
- After the middle of the 2000s, when the Involvement Industry had entered the scene, a ‘representative’ was more usually someone who applied for the role, met a set of criteria set by the public body who then selected a ‘suitable candidate’. There would be no structure to allow the selected ‘representative’ to talk to others using the services they act as the patient ‘representative’ for. This means they can only take their own views and experience and cannot report to other patients what was said ‘on their behalf’.
REPRESENTATION has two different meanings that are often confused:
- Representation – ‘of the public interest’ through personal experience and a personal perception of what the public needs, and what may endanger the public
- Representation – ‘of the public’ through becoming aware of the public’s views, acting as the public’s spokesperson and being held accountable for what is said, or not said on behalf of the public.
CO-PRODUCTION is a jargon word used by public service professionals to describe a level of collaborative working with the patients who use the services they provide, or members of the public who may have a need for them in the future. Professionals may well differ in their interpretation of the meaning of the word ‘co-production’. NEF/NESTA, key players in the Involvement Industry, accept that:
“It can also be difficult for any professional to relinquish control and ‘hand over the stick’; not only does this challenge occupational identities but it also confers a greater sense of risk – co-production can be ‘messy’ and is inimical to rigid control. If the hearts and minds of those delivering services on the ground cannot be changed, and if the necessary skills associated with relinquishing control are not embedded, co-production is likely to be constrained.”
A service user’s view is given by Peter Beresford, an academic known for his work in the field of citizen participation and user involvement, who referred to the professionals’ reluctance to relinquish control saying:
“The language and movement for co-production is one expression of this. But it is a slow process and sadly whatever the politics of governments; whether they favour state or market, too often for all the rhetoric, other people still make key decisions about us and our lives, whether we are talking about the NHS, welfare reform or the education system. And we know that this is inefficient and wasteful. Instead, listen to people on the receiving end. Make sure discussions and decision-making processes are as accessible and inclusive as possible so their diverse views and voices can be heard. Most of all, subject schemes for co-production to a ruthless test. Service users and their organisations must always be in the room, on the committee, in the decision-making body. Then we’re really likely to get somewhere – doing it together.” – Peter Beresford OBE 
INVOLVEMENT, ENGAGEMENT, CONSULTATION & PARTICIPATION are words that are all used by public service professionals to describe working with people who use the services they are responsible for. Again the professionals differ in their definitions of each of these words, which usually describe the particular public service communicating with individual patients and individual members of the public. They rarely, in 2015 or 2016, describe patients or the public being given the opportunity to discuss services between themselves, or to make their own collective suggestions for service improvements.
Examples of professional confusion and of how they interchange these words:
- “Examples of this type of engagement would include our patient participation groups and membership schemes where we ask members to get involved in various pieces of work.” (North Lancashire Clinical Commissioning Group)
- “Consultation is a key process in community engagement.” AND “Community engagement is the active participation of our local residents and community groups in the decisions that affect their lives.” (Cambridge City Council)
However Falkirk Health & Social Care Partnership in their Participation and Engagement Strategy, published in March 2016, try to make sense of all this confusion. They describe how they see the differences between all the words in a simple diagram which shows that the more equal the partnership arrangements become then fewer people are involved. They also show some understanding of the problem by saying:
- “Generally, we can say that we engage with communities and you participate in activities with communities or public services.”
- “Other terms are often used alongside participation and engagement, such as consultation, co-production, community development, active citizenship and so on.”