What really happened at the NHS Citizen Workshop – held in London on 12th September 2016.

The NHS England EVENTS PAGE said:
“This workshop will explore the next steps for the NHS Citizen programme, ensuring that the programme is co-produced with citizens and ensuring learning from past events and reports.”

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The reality was that:

  • There was no full & open discussion on the future of NHS Citizen at any point
  • We were expected to listen to invited ‘experts’ with only our questions invited
  • We were expected to listen to staff commenting on all our own contributions – why?
  • We were not allowed to openly discuss anyone else’s concerns, comments or ideas
  • All our comments were effectively dismissed by staff who didn’t enable discussion

How well did the NHS Citizen workshop manage – “ensuring the programme is co-produced with citizens”?  

Not well at all – it was completely ‘staff-led’, by NHS England’s Patient & Public Participation Team, (PPPT) with no co-production (which is joint & equal decision-making following an open discussion and with any conclusions made by both the organisation and the ‘citizens’ together).

This is how it was:

  • A brief slide show described the staff team’s 2 digital ‘developments’ for NHS Citizen
  • We had no handouts of the slides shown, asked for some and they came hours later
  • The handouts left out a flow chart showing feedback flow and NHS Citizen contacts
  • We were not asked if we agreed with the 2 digital developments for NHS Citizen
  • We were not asked if we thought these digital developments were a good idea or not
  • We were not shown the plans for NHS Citizen discussed to the Board – 2 weeks later
  • We were not asked to comment on these plans before they went on the NHSE website
  • We have never been asked about what are actually the PPPT’s own NHS Citizen plans

See for yourself – these links cover the five hour workshop:

NHS Citizen workshop – morning session

NHS Citizen workshop – afternoon session

NHS Citizen – feedback session

Who attended the workshop?

About 60 people attended with about 20 people who were ‘facilitating’ the day as NHS England staff or external associates supporting the technology of the webcast. There were at least 1 ‘facilitator’ for every 3 attendees.  The 60+ people who attended had applied to attend via the NHS Events pages.  There was no ‘invitee only’ restriction, which is often the case for events involving clinicians.

In June 2016, members of National NHS Public Voice had asked to meet with the PPPT after the NHS Citizen ‘Gather’ blog site had been closed overnight at the end of May with no warning or explanation.  The PPPT said a workshop in September would be arranged just for people who had been involved in NHS Citizen during the three years it had existed to discuss, with the PPPT, how NHS Citizen could be improved.

However those actually attending the NHS Citizen Workshop in September, far from the ‘citizens’ only, included commissioners, voluntary sector providers, and training consultants.  Those attending as ordinary members of the public who had been involved in NHS Citizen only numbered about 30 people.

People from National NHS Public Voice were there, and also watched the workshop webcast.

We were particularly disappointed as, in the spirit of the Workshop’s purpose, we had spoken with over 250 people at NHS events during the week before the Workshop.

We asked all these people how they would like a new NHS Citizen programme to work, and shared their views with all those at the workshop in a contribution from the floor – only to have all these people’s voices ignored.

These people had told us they wanted a collective democratic voice that was independent from service commissioners or providers, that was also inclusive and respectful. But they said the most important thing to them was that any ‘patient representative’ should be accountable to, and elected by, the rest of us.  They felt it was unacceptable that NHS England selected the patient representatives and that NHS England provided no system to enable them to actually represent the views, experience and knowledge of the wider public, or to give feedback on what was said or done on everyone’s behalf.

People had also told us that NHS England is not engaging with mental health service users and that they had no contact with the STP Footprints – which was very worrying.

The conclusions from the workshop:

There was little time left and no real discussion about what should happen next.  We were basically told that:

  • the PPPT staff would write a report for the NHS England Board on 29/10/16
  • a steering group would be set up to take the development of NHS Citizen forward
  • and that this steering group would include members of the public
  • and we would receive a copy of the staff ‘write up’ from the workshop

However there has been no ‘write up’ sent as yet, nor a copy of the report they took to the NHS England Board.  We have had one email thanking us for coming, giving web-links to the web-cast, an evaluation form and another promise of more information. That’s all.

National NHS Public Voice feels that this workshop was not facilitated in a professional and inclusive way nor did it demonstrate co-production.

We also feel that the NHS England Patient and Public Participation Team did not demonstrate that they have knowledge, experience, or even an understanding of best practice in facilitating an inclusive public involvement event. Nor do we feel that they showed any understanding of how co-production is actually supposed to work.

We were told repeatedly  ‘nothing is a done deal’  but the Board paper proved that the opposite is true.

Look out for our next post – explaining our concerns about the plans.

Why not look at a ‘Ladder of Participation’ to see what level of influence you are being allowed?

Sherry Arnstein created a Ladder of Participation in America in 1969 describing the different levels of control over their lives that those who hold the power allow ‘citizens’ to have.

 The original Ladder of Participation devised by Sherry Arnstein in 1969

Some of you may know that, in 1969, Sherry Arnstein looked at citizen control and how citizen participation helps people achieve it.  As she worked in America she used the word ‘citizen’ – an American term for our ‘general public’ or ‘people’. The word ‘citizen’ has now been adopted in the NHS.

Sherry studied different citizen campaigns in different parts of the USA and published her conclusions in an academic paper.  Her work shook up both the political thinking of the time and its comfortable democratic principles.

She talked about the ‘have nots’, as citizens/people without power, and about how citizen participation was a means for them to gain some influence over the affluent society they lived in, and a share in some of its benefits.  Her Ladder shows the different levels of citizen participation that measure how much control people are allowed to have over aspects of their lives.

She also described how, the closer the ‘have nots’ got to achieving full citizen control, the more barriers and excuses were introduced by those holding the power to make the decisions that affected their lives.  And, how these barriers and excuses showed the discrimination that existed at the time.

Sherry was working on this at the end of the ’60s, a time when there was the American civil rights movement, the anti-Vietnam War movement and student unrest everywhere. screen-shot-2013-10-11-at-12-13-29-amA poster she saw created by French students in the 1968 Paris uprising particularly inspired her.

‘I participate, You participate, He participates, We participate, You participate, They Profit’

It’s uncanny how relevant the words from her paper are today – nearly half a century later.

“The heated controversy over “citizen participation”, “citizen control”, and “maximum feasible involvement of the poor”, has been waged largely in terms of exacerbated rhetoric and misleading euphemisms.”

 “The idea of citizen participation is a little like eating spinach: no one is against it in principle because it is good for you. Participation of the governed in their government is, in theory, the cornerstone of democracy-a revered idea that is vigorously applauded by virtually everyone.”

“And when the have-nots define participation as redistribution of power, the American consensus on the fundamental principle explodes into many shades of outright racial, ethnic, ideological, and political opposition.”

This version of her Ladder of Participation clearly summarises her analysis: slide_6

Only a decade ago people in many places across the country experienced participation in the NHS at rungs 6 and 7 of the Ladder of Participation which Arnstein describes as Citizen Power.

Whereas in today’s NHS in England ‘citizens’ are allowed no more than rungs 3, 4 and 5 of the Ladder of Participation, which Arnstein describes as Tokenism.

But the NHS, in England, is now introducing the two lowest levels of Arnstein’s Ladder of Participation (1 ‘manipulation’ &  2 ‘therapy’) by encouraging people to manage their own health.  As part of the Sustainability and Transformation Plans and New Models of Care we are now expected to change our lifestyles and to ‘self-manage’ any long term conditions we may live with.  The NHS describes this new expectation as ‘patient involvement, or participation, in their care’ but Arnstein describes it very clearly as Nonparticipation.

Even worse – only a few weeks ago – NHS England’s Patient and Public Participation Team introduced their new, supposedly improved, ‘Citizen’ Participation programme.  But this will only work at levels 1 – 5 of the Ladder – which is ‘Nonparticipation‘ and ‘Tokenism‘.

The people’s voice in the NHS has been taken away – why?

 A decade ago the NHS was proud of working with patients, and the public, to improve services which then began to work better than they had for a long time.  Why are the ideas and suggestions of the people using the NHS now considered so dangerous that they need to be silenced? It is really disappointing that the level of Participation in the NHS has sunk so low in such a relatively short time.

Why is this necessary – why is the public voice so dangerous?  

The Ladder below describes a modern version of Arnstein’s Ladder of Participation created by a French student in 2009 showing how ‘citizen control’ is seen as dangerous by those holding the power and control. The 1968 Paris student slogan is included (top right), and the spelling is interesting but the message is perfectly clear.

800px-arnstein_ladder_of_participation_fahad

Arnstein’s Ladder, created to describe how people could gain power and control over their lives, has been ‘diluted’ over the years by those holding the power.

downloadEach time her Ladder is simplified its meaning is diluted as there is no reference to her clear analysis.  The very simplified version shown here is often used to show Arnstein’s Ladder.

But when compared to the detailed one shown earlier it tells us very little.

The one the right is a New Economics Foundation version, many ‘co-‘ words, but no clear escreen-shot-2014-03-10-at-5-12-46-pm-278x300xplanation or analysis!

N.B. It was included, on P20, in the Northern Ireland Health Minister’s 10 year plan to save their health service ‘Health & Wellbeing 2026, Delivering Together’ that was published last Tuesday (25/10/16).

coproduction-tree-660This is produced  by Governance International, a consultancy set up in the ’00s, one of the new Involvement Industry.  They help public services to ‘focus on smart savings and innovations to achieve better citizen outcomes‘!

Well they have a tree surrounded by all the ‘co-‘ words – so they must be good!

Finally – Arnstein’s Ladder of Participation, created to describe how people could gain power and control over their lives, has now been adopted by big business.

There is now a Ladder of Participation for On-line Customers.

echelle-participative-2006

Another about Loyalty to a Brand, for the marketing department.crm-strategy-20-638

There is even a ‘success’ Ladder for all those ambitious middle managers!!

9stepladderof-success

       !

2016 – A summer of secrets successfully challenged by the voice of the public.

How NHS England covered their backs by publishing, on 15/09/16, ‘Engaging Local People – a guide for local areas developing STPs’ after public outcry, including a direct challenge by National NHS Public Voice.

cropped-cropped-26-04-16_drsdemo2

The wider public started to hear about STPs (Sustainability & Transformation Plans) in the late spring of 2016.  These are now required by the newly formed ‘footprints‘ which are made up of large groups of health and social care organisations in order to plan services on a larger scale, for a much larger area and population than the statutory CCGs (Clinical Commissiong Groups) that plan and contract NHS services at borough level.

This new public awareness of previously secret changes in the NHS was combined with the growing publicity about the Junior Doctors’ dispute over unsafe contract changes, the lack of funding for the NHS and the growing hospital debts.

hospital

Hospital Trust Finances        (Green = surplus  &   Red = deficit)

It was also becoming increasingly clear that the department of health was not willing to fund the increased demand for NHS services.  This predictable demand is due to an ageing population, where people live long enough to suffer from more long term conditions, and to more people surviving life-threatening conditions as there are more successful diagnostics and treatments resulting from medical research.

The work on the ‘Vanguard sites‘ was also becoming more visible to the public.  These ‘Vanguards’ were set up across England in 2015 as a number of NHS providers worked together to test out the ‘new models of care’ proposed in the 2014 NHS England Five Year Forward View. People were becoming aware of this work mainly due to the fact that many Vanguard proposals were to centralise their area’s Urgent and Emergency  Care services resulting in plans to close many local A&Es around the country.

All the documents, and guidance letters from NHSE England said that ‘engagement’ with the public was crucial to the success of the STPs and the New Models of Care, particularly in the early stages.  Such as the guidance letter dated 16th February 2016 which says:

“If we get this right, then together we will:
  engage patients, staff and communities from the start, developing priorities through the eyes of        those who use and pay for the NHS;”

However there was no public, or patient information about any of these changes, nor any involvement in the decisions to restructure local services either at an early, or at any, stage.

Informed campaigners worked hard to enlighten the public and the 38 Degrees pressure group worked with the Guardian newspaper leading to the headline on 26th August 2016:

“The NHS secret is out. And local communities won’t like it.”

This started a public outcry which grew as the message was repeated across the media. Campaigners, including those from N-NHS-PV (the National NHS Public Voice campaign), continued to challenge NHS England, about their local ‘footprints’ and their CCGs about the lack of public information on the proposed changes, together with a lack of patient and public involvement in the planning of them.

In Manchester, on the 7th and 8th of September, the NHS EXPO was held.  This was a showcase for providers in the so called ‘health economy’.  Campaigners, including from N-NHS-PV, challenged NHS England at various EXPO sessions, in public, about the secrecy of the Five Year Forward View plans through the Vanguards, New Models of Care and STPs.  NHS England senior executives were very defensive, tight lipped and gave no answers or reasons.

However one week later, on 15th September 2016, a document was published by NHS England that required the STP collaboratives to ‘engage’ with patients and the public.  This document, Engaging Local People – a guide for local areas developing Sustainability & Transformation Plans was given a very high profile on the NHS England website, and inserted at the bottom of the webpage about support for STP footprints.  This document, however had not been mentioned the week before at the NHS EXPO  –  or even appeared to exist.

This document claims that it outlines how the:

“public bodies with responsibility for the STPs have a variety of legal duties including to involve the public in the exercise of their statutory functions”.  

It goes on to say that:

“Not doing so effectively is likely to cause legal challenge and lengthy delay.”

It then repeats this message throughout the document, and on P13 it says that:

“failure to appropriately involve patients and the public in plans may lead to judicial review and criticism, regardless of any resource constraints.”

This focus on legal challenge may be linked to a Freedom of Information request sent by N-NHS-PV campaigners to NHS England in July 2016 regarding involvement of the public in the Five Year Forward View implementation, and the STPs.  This Freedom of Information request has still not been answered.

we-have-the-power

It is clear that, during the summer of 2016, the voice of the public, supported by N-NHS-PV, held NHS England to account for not making sure that the public are involved in the implementation of the Five Year Forward View proposals. 

NHS England had funded an NHS Citizen website since 2013 which included a public discussion forum called ‘Gather’. However this forum was closed overnight at the end of May 2016 – and with it went the only national public space within the NHS in England where open discussion about current NHS issues was possible for patients and the wider public.

Might it be suggested that the action, by the Director of Patient and Public Voice and Insight at NHS England, to suddenly silence the ‘NHS Citizen’ website overnight was a serious error of judgement.

Double-speak in the Involvement Industry

images-1

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.

download
A simplified version of Arnstein’s ladder of participation

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.

7-_introduction_to_the_co-production_star

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 [9]

5874815_stock-photo-engagement-3d-word-collage-interaction-participation-involvement

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.”

It may be fun to ask ‘engagement’ officers what the difference is between the four words (involvement, participation, engagement and consultation) and also ask them to define what they mean by ‘co-production’.  

It would be rather unkind – but may well get LOTS OF DIFFERENT answers.  

The language of the NHS public voice

How language is used to control other people

 2015-09-15-a4poster_drop_jargon

Language is often used as a tool by people to control others.

People who feel the need to be in control often choose to use words that they think show they are more aware, important, knowledgeable and powerful than the people they are communicating with.

They use ‘jargon’ using a specific form of language that is easily understood by those people they feel are equal to them but that others do not understand.  This gives an unspoken message that they are more important, that they are in control and anyone else’s contribution to the conversation is insignificant and they are right to ignore it.

In the NHS (and in many organisations) managers use management speak which is a type of jargon understood in Board rooms.  They insist that documents for, and records of, meetings use this management speak.  This gives a clear message to the rest of us that running the NHS needs to be by members of the elite ‘Management Speakers Club’ (MSP) only.

This use of language as power, in the MSP even evolves to eventually exclude those not ambitious enough to keep up with the latest words.  For instance, we used to have ‘the future’ now we are all ‘moving forward’,  we used to do things ‘now’ but this became ‘at this moment in time’,  we used to plan for ‘our locality’ but this is now ‘the footprint’ and we used to have ‘health services’ but now we have a ‘health economy’.

jargon

An ‘Involvement Industry’ has evolved in the last decade allowed a number of think tanks and consultancies to ‘advise’ the public sector on how to involve people in the services they provide for them.  This new ‘market’ for involvement advisors grew as a response to the new legal duties to involve the public that most public bodies were given over this period and the acceptance of public/private partnerships as the norm in the public sector.

This involvement industry began to take control of the language used in involving people in the services they received, and the NHS readily adopted it themselves.

People started to be regularly considered as ‘customers’ and such words as ‘co-production’, developed in industry in the USA in the 1970s, arrived in the UK and is used now all the time in the NHS and in social care.  The meaning has moved from a true and equal partnership between ‘customers’ and organisations, which was the definition a decade ago, to the current definition of ‘asking some people what their views are and taking some of these views on board, but the organisation makes all decisions’.

NHS England published an Accessible Information Standard in 2015 for health service providers and commissioners which became a legal duty on 31st July 2016.  This requires organisations to identify, record and support people’s individual communication needs, such as sight or hearing loss, autism, learning or speech difficulties or concentration and memory problems.  This new Accessible Information Standard is, of course, written in ‘management speak’ and it includes a number of sentences with 60 or more words in them.

People using health and social care services need to take control of the language used to describe them and in involving them.  

They should be able to choose how professionals address them, as a whole, groups and as individuals.  There are many terms to choose from, such as:

  • people generally using the NHS are often called ‘patients’  ‘customers’  ‘clients’ or ‘service users’
  •  people using social care services are often called ‘clients’ or ‘service users’
  • people with long term conditions are often called’disabled’  ‘chronically ill’  or ‘people with lived experience’

Individuals should always expect a professional to ask how they want to be addressed and not to be automatically called by their first name if they would find that uncomfortable.

We need, as the public and as individuals, to have the confidence to:

  • Challenge the assumption that NHS and social care professionals can ALWAYS choose the language we ALL use
  • Take control of the language that WE use – and not just adopt their chosen words
  • Insist that all documents intended for the public are written in Plain English
  • Insist that any ‘presentation’ material for the public is in Plain English
  • Insist that NHS and social care professionals explain any jargon they use

NHS England repeats in their policies and other documents that:

  • “Patients and the public are at the heart of everything we do”
  •   the NHS is “of the people, by the people and for the people”  

So why can’t the people choose the language used in NHS ‘engagement’?