Shh! It’s a secret! The NHS involved us, the public, in its decisions – but they didn’t tell us how or when!

Well – NHS England has just re-written their guidance document saying how the public should be involved in decisions about the NHS. But – they kept this a SECRET! They only involved a few ‘select’ members of the public – in deciding how the NHS will involve ALL of us, the public, in NHS decisions in the future!



But – N NHS PV found out.  So we’re telling you.cropped-megaphone.jpg

(We were not included in the list of the ‘select’ few – who were invited to a workshop and sent some draft documents to comment on – but we have some new members who DID know – and they thought the Public SHOULD know!)

So – What is this all about?

In April 2013 the Health & Social Care Act became law.

This Act created both NHS England, the national organisation responsible for all NHS services in England, and Clinical Commissioning Groups, or CCGs, which are local organisations responsible for our local NHS services.

(There are 209 CCGs across England – Northern Ireland, Scotland & Wales are each responsible for their own NHS services).

The Act includes a legal duty for Public Involvement in the ‘commissioning arrangements’ of NHS services, (how they are planned and delivered) for both NHS England, in Section 23 13Q, and the CCGs, in Section 26 14Z2.

In September 2013 NHS England published a guidance document called ‘Transforming Participation in Health and Care for Clinical Commissioning Groups, CCGs.’

 This document has now been removed from the NHS website as it was replaced, on 6/4/17 by a new version , which is still the Statutory Guidance explaining the legal duty in the Act that CCGs MUST ‘have regard to’! 

This guidance shows CCGs how, and when, to involve both patients and the public in the decisions they make about how local NHS services are commissioned (planned and delivered).

The guidance is a legal document, intended to explain the wording of the Act.

It is the CCGs’ responsibility to make sure the NHS services local people need are made available to them, and they ‘must have regard to any guidance published‘ by NHS England about public involvement in decisions about these services. This requirement is also stated in Section 14Z2 of the Act.

In 2013, the original guidance explaining this legal duty was designed and written jointly, by NHS England working together with members of the public.  These were people who had used the NHS in England, and many gave their stories and described how they were often involved in improving the NHS services they relied on.

However in November 2016 Olivia Butterworth, who is the Head of Public Voice at NHS England, said she wanted people to help her make changes to the original guidance document.  She did this in a news blog, OB news blog 25.11.16, on the NHS England website News page, saying that this original guidance “has become outdated”  as “we’ve moved on” now.

Sincere apologies – the original link to her blog now takes the reader to another page on NHS England’s website as they have removed her blog from the website – completely!  

So we have inserted, instead, a copy we made and saved of her news blog – in case such a thing ever happened.

How were the public involved in ‘updating’ the guidance about involving them?

Olivia invited anyone to send in, by email to her, their ideas about how this guidance should be ‘updated’ before Friday 13th January 2017.  But this was a general invitation, for anyone, not just for the public.

And it only gave people seven weeks to respond, which included the Christmas and New Year holidays, so it was not likely to attract lots of responses.

She gave many reasons in her blog post for the urgent need to change this document.  But there were a number of people who wrote comments on her post and were not impressed.


You can see these comments by clicking on this link – comments-on-olivias-blog-post.  

They were at the bottom of her blog page, but have now been removed (in early March 2017).  

The blog post itself has also now been removed (mid-March 2017).

(They moved her blog post weeks ago from its original November position on the general News pages and put it on the Involvement Hub News pages. But there was NO information showing where it had been moved to –  in case anyone who had seen it originally wanted to revisit it.)

It makes you wonder – Did they want us to see it – or did they mean to hide it? 

We don’t know whether all these comments made on her blog post page were included, or taken account of, in the ‘updating’ of the original guidance.

This ‘send all your ideas to me’ method of ‘involving people’ meant that the ideas people sent in were only seen by her  – and those she chose to share them with.

That was not very ‘transparent‘!

There was no open discussion possible for people to share their ideas, and develop them together, other than all the blog post comments – which are no longer online for all to see!

We don’t know:

  • how many people sent ideas to her,
  • what they said, and
  • what was recorded,
  • which contributions were accepted, and
  • which were rejected
  • or why.

This is not an inclusive, meaningful or respectful way to involve the public.

It is certainly NOT ‘transparent’.

It shows a controlled, disempowering, tokenistic, and ‘managed’ approach to involving people in decisions.

What happened next?

We, the general public, haven’t heard anything since the general invitation to suggest ideas for ‘updating’ the guidance.  We haven’t been informed about what has happened.

But we now know that Olivia, on behalf of NHS England, had been busy in the meantime – behind closed doors!

Now – we can ‘show’ you the work that has been done – behind those closed doors.

Our new members include some on the list of the ‘select few’ who have been given ‘inside information’ and we thank them for sharing this with us.

We are able to reproduce it here for you, the general public, to make sure you are no longer completely ‘left out’ – not knowing what these draft plans are to involve us in decisions about our NHS.

Here is the ‘inside information’:

What happens now?

We haven’t been informed.

But the workshop slides suggest that a final version of both the Draft Guidance documents, above, will be published at the end of March 2017.  It is not clear if this will be after being approved by the the NHS England Board, or not!

We think that you, the public, should know about a decision soon to be made by NHS England about how you, the public, are to be involved in NHS decisions!

Unfortunately the deadline for comments was 23rd February 2017.  So we have all missed the deadline.  We sincerely apologise for not being able to share this with you earlier.

We can only hope that when the final version of the Statutory Guidance for Public Involvement is published, maybe at the end of March, NHS England will decide to formally consult us all before the new guidance is set in stone.

What N-NHS-PV thinks!

That NHS England is proposing to move far away from its original declared promise, and legal duty, of ‘transparency‘ and ‘participation‘:

This promise was clearly stated on P2 of the minutes of the inaugural meeting of the NHS Commissioning Board, later called NHS England, in October 2012 in the description of the role of the NHS Commissioning Board, which is now called NHS England.

But NHS England demonstrates this move away from the original promise:

  • in the content of their new draft Guidance document for involving the public
  • and in the way they seemed to rule out actually involving the public in ‘updating’ the one that was published in 2013 – about how to involve the public

NHS England has ignored ‘transparency’ in developing the draft guidance for Public Involvement which has been:

  • changed in a way that was developed and written in secret
  • changed by involving very few ‘selected’ people in its development
  • controlled by NOT ensuring these people actually ‘represented’ the wider public view
  • developed with the timescales for feedback too short to involve the wider public

We respect our new members who actually shared the drafts with lots of people.

NHS England’s new guidance gives no recognition of the tradition of user-led, inclusive Patient & Public Participation in the NHS:

  • This was still practiced when the minutes of the first meeting of the organisation later called NHS England, were written in October 2012
  • Public involvement was then still ‘facilitated’ (supported and enabled)
  • Rather than being ‘managed’ and ‘controlled’ as it is now, and as the draft guidance document suggests it should be in the future

NHS England’s new guidance does a U turn on the time when people:

  • were ‘supported’ and ‘enabled’ to be involved in decisions about the NHS
  • had individual differences recognised and any barriers to being involved removed or addressed to allow everyone an equal voice
  • had experience and understanding respected and valued
  • were treated with respect and offered an inclusive and equal model of involvement
  • were NOT segregated into ‘silos’ based on ‘need’ in a way that masquerades as equality

But that’s not the end of this down-sizing of the Public’s role in the future of Our=NHS – GONE is the accountability of:

  • NHS service planners to the Public for their decisions about the NHS
  • NHS commissioners to the Public for their Public Involvement arrangements
  • NHS-chosen ‘patient representatives’ to the Public for all they say & do ‘on our behalf’

In fact we, the public, won’t be told who these Patient representatives are, how they act and what they say as they ‘represent’ us, or even how they ‘consult’ us.

NHS England are making decisions  FOR us – the people who use, and pay for, Our=NHS

The guidance does NOT describe how to meet the actual wording of the relevant parts of the Health & Social Care Act 2012, which is its purpose: 

  • The actual wording of the Act, in both Section 23 13Q, (for NHS England) and Section 26,14Z2, (for CCGs) states clearly the legal duty to involve the public requires them to involve ‘individuals to whom the services are being or may be provided
  • The draft guidance promotes a ‘top down’, management-led approach to Public Involvement through NHS managers selecting a few people to involve in the decisions about service planning and delivery
  • It introduces a targeted approach to equality, making assumptions about people, even suggesting that voluntary organsations can speak for the people they provide services for

Individuals should decide who they want to speak, or advocate, for them:

  • The draft guidance is NOT describing the involvement of the ‘individuals to whom services are being or may be provided
  • To do this the NHS should be aiming to involve all the individuals within the general public, to hear all their views, and allow them to choose their own representatives

The new document gives Statutory Guidance and should match the requirements in the Act, which refers to ‘individuals‘:  

It should NOT substitute the people that the NHS chooses to act as ‘patient representatives’ for The Real Thing, members of the Public:

  • Members of the public mean just that – individuals
  • Individual members of the public should all select the individuals to represent US
  • We should all be informed and involved in decisions about Our=NHS


We will look at how the NHS England officers are advising CCGs to involve us, the public , in future decisions in a new post:

  • WHEN the new Statutory Guidance is published – end of March 2017 (maybe)
  • As a NEW document ABOUT INVOLVING US – that DIDN’T INVOLVE US in writing it!

Please tell us what YOU think – about this undermining of the role that the Public used to have in decisions about the future of Our=NHS.

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.


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.


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!!