Citizens, Consumers and the NHS

Christine Hogg’s Citizens, Consumers and the NHS: capturing voices (Palgrave MacMillan, November 2008; 224p; £19.99  ) provides a thorough narrative of where the Community Health Councils (CHCs) came from  in 1974, what they achieved over 30 years and why they passed from the patient and public involvement (PPI) scene in England in 2003 after a rancorous final chapter following their surprise abolition almost as an afterthought in the NHS Plan of 2000.

Woven through this narrative  is an analysis of citizenship and social rights versus consumerism and user choice as drivers of often competing, conflicting and even contradictory initiatives in the PPI world from the mid ‘70s until now.  As Christine Hogg makes clear, the one cannot be properly appreciated without an understanding of the other, so in essence this is two books in one.  You will not be disappointed if you pursue either or both strands as the history and theory are inextricable.

An overriding conclusion from the book is that 30 years of  fragmented policy, political expediency and false starts in PPI have taken a fatal toll on organisational memory. That is perhaps the greatest collateral damage from the death of the CHC movement and the miserable interlude from its creation in 2003 to its extermination in 2008 of the Commission  for Patient and Public involvement in Health and its ill-fated Patients Forums.  After only one year in operation it is too early to tell if the Local Involvement Networks (LINks), the main element in the still-fragmented replacement system to everything that went before in England,  will succeed in spite of their vague governance and accountability arrangements and a seeming lack of interest from the Department of Health.  But as the author makes clear, without understanding the mistakes, missed opportunities but also notable successes of the past 30 years, we shall all have to live through –  or perhaps be dragged through –  them again. 

Conspiracists might conclude that all governments wish to divert user knowledge, energy and the attention of user-led organisations away from the levers of power. That retrospective is sloppy and simplistic, though consumed in large quantities.  The truth  about why the CHCs were not reformed but abolished in England and the motivations of the major players at the time and subsequently is a tangled skein, but a vital story emerges from the unpicking in this book.  Rather like democracy in Weimar Germany, CHCs  did not fail on any objective criteria so much as because their potential was never seriously understood, valued, developed or – most importantly – reformed to meet evolving circumstances.  By 2000 the NHS Plan’s diktat simply ordered their demise in England to everyone’s surprise (though in Wales they have evolved and prospered in what is becoming quite a different healthcare environment).  Perhaps Wales therefore provides the counterfactual historical model to the  English experience of CHCs:  “what would it have been like if…..”. 

The story of PPI over the last 30 years as Christine Hogg explains “has much to celebrate and much to mourn.  Though the world has changed enormously since 1974,  the issues that policy makers tried to address in setting up CHCs are still current and seem to have advanced little.”  What patient – not forgetting carers -  and public involvement is actually for (in other words, the ends of the policy) is still the hardest question to answer and the one most easily avoided and obscured as the debate about the means to encourage and sustain participation thunders on generating more heat than light and often exhausting the participants. It will be interesting to see if the NHS Constitution is but the most recent example of avoiding the real issue of ownership and control of our most important public service.

As one of the “usual suspects”, I am delighted to be among this book’s collective dedicatees – it is good company to be in.  Would I recommend this book to others?  Without reservation, particularly to Chairs of LINks and their members for whom Christine Hogg has provided a reliable anchor in history and theory for the otherwise uncharted journey they have begun.  For LINks and their Host bodies,  Citizens, Consumers and the NHS should help them understand the issues and efforts of the past which are with us still so they don’t waste time discovering them anew and wondering what to do next.

There are many people with first hand knowledge of the CHC experience and its closing chapter in particular.  This is an open invitation for them to comment from their experience and give their views on what followed.

Coming up to Easter Newsletter

No sooner had we posted our article about users reclaiming their own data for their own uses than Gordon Brown got in on the act with their publication on working together – see the quote below:-

Enabling patients to have their say

Patients can already view comparative information about a range of healthcare services online at the NHS Choices website. Patients can make their own comments, observations and suggestions about hospital services and allow these to be visible to other patients. Often the best way for people to understand whether a service is right for them is to see what other similar users thought of that service. This is the experience of millions of customers who use Amazon.com or iTunes, and while these are for simpler, less important services like books or music, the same principle of valuing the opinions and views of others applies in the decisions we make around our health and care as well. Around 10,000 such comments have been posted since the launch of NHS Choices in 2007. During 2009 the ability to make this kind of comment will be extended from hospitals to include GP practices, and over time we expect patients to be able to make comments on and review all NHS services through the NHS Choices website. At the same time, payment to hospitals for services is being linked to patient-reported experiences and outcomes as one way of driving improved quality and patient-focus across the NHS. And we will see the quantity of this payment linked to outcomes increasing year-on-year as quality measurement improves and commissioners focus on ever higher outcomes.

PG – new project, new book

A recent Val Moore blog post logged two recent developments in the introduction of Policy Governance© into the UK with a second NHS Trust taking up the approach. For those who want to understand and learn more about this particular approach to PG, Caroline Oliver founder member of the International Policy Governance Association as well as current Chair of the UKPGA has just written Getting Started with Policy Governance – bringing purpose, integrity and efficiency to your Board ( pub Jossey-Bass January 2009).  This is essential reading for any Board member who wants to “up their game” and is the ideal follow up to John Carver’s Boards that Make a Difference Jossey-Bass 2006 which is the “bible” for policy governance. Check the UKPGA site and Caroline’s own site for more information.

MND Association heard

More evidence of Government valuing the work we do with clients comes with the following news from the Motor Neurone Disease Association – namely the announcement of an offer of £120k from the Third Sector Investment Programme in response to their Year of Care application. This is exactly the amount the Association requested for the three years to 2012 with the first tranche of £50k to be received in April 2009 subject to agreement of terms.

This award was made from the Innovation, Excellence & Service Development Fund and this approval is confirmation of the Association’s excellent contribution for people with MND. Hooray again (and sometimes we think we should just dedicate this whole blog to MND). We started this month by writing about an amazing piece of persuasive cinema ‘Mugged by MND’ and if you have not watched it on You Tube you should.

Whose Schools?

Back to our knitting with another Millar’s tale about parent participation in schools and how the definition of ‘good’ parents fostered by teachers was at some variance with a more modern view of parents having a real say – whose schools are they anyway? asks Caroline.

Lost your Larry, dear?

We have mentioned the Millar family (en passant) in the blog and Caroline’s daughters are our embryonic young digital natives panel. Caroline’s husband Tom Piper makes his living in an entirely separate sphere and so has not been mentioned. We make an exception to congratulate him (en passant) on the award of a ‘Larry’ – I think we have got the thesp speak right for the Laurence Olivier Awards – for his work on the costumes of the RSC history plays. The celebrations were not at all dampened by the fact that no sooner had Tom and his colleague Emma received the award than it was lost. All ransom demands received will be passed on.

Policy Governance© – new project , new book

Policy Governance© taken up by another NHS body

More evidence comes of the spread of Policy Governance © with news of a new PG implementation project within a NHS Trust. I am working (writes Val Moore) with John Bruce whose experience of implementing PG in a NHS context was the topic of a past blog about the success of Policy Governance © in Southend University Hospital NHS Foundation Trust.

Crystal Clear about Ends and Means

Over the past year or two there has been considerable interest in the principles of Policy Governance© which emphasises the importance of separating the role of the Board – which is governance – from the role of the Chief Executive – which is management.  Policy Governance© stresses that the Board should be acting on behalf of the owners who can be defined as both legal and moral “owners” and concentrating on the “ends” of the organisation i.e. what benefit the organisation is producing, for whom and at what cost.  The “means” whereby the organisation fulfils its “ends” are the business of the Chief Executive and Policy Governance is crystal clear on delegation and accountability.

A number of organisations within the NHS are looking with interest at Policy Governance© and with my colleagues on the Board of the UK Policy Governance Association and the Governance Corporation, I am enjoying the opportunity to spread the word.

Essential Reading for PG Disciples

And talking of “the word”, Caroline Oliver founder member of the International Policy Governance Association as well as current Chair of the UKPGA has just written Getting Started with Policy Governance – bringing purpose, integrity and efficiency to your Board ( Jossey-Bass January 2009).  This is essential reading for any Board member who wants to “up their game” and is the ideal follow up to John Carver’s Boards that Make a Difference (Jossey-Bass 2006) which is the “bible” for policy governance. Check the UKPGA site and Caroline’s own site for more information.

Footnote

Policy Governance © is the registered service mark of John Carver. Used with permission.  The © after Policy Governance is a symbol used to protect the integrity of the principles and practice that make up the Policy Governance© model.  Its use does not imply any financial obligation to the service mark owner.

Reclaim your own experiences – users must reclaim and use the information they provide

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Best Tool in the Box

I was talking to the guy the other day who runs Passenger Focus the organisation that represents the views of rail users – let’s call him Smith. The organisation has been through a lot of change in recent years in creating a new identity and ways of working for itself outside the Consumer Focus big tent. Just today I see that Geoff Hoon (now Transport Minister) announced that Passenger Focus was to represent air travellers as well so he must be doing something right. He told me the most useful implement that he had grabbed for his toolbox and one which he turned to most days as he stood on the footplate of his new policy locomotive, was the annual National Passenger Survey. The survey previously had been the property of the Strategic Rail Authority. Now it is where it belongs in the hands of passenger representatives.

Stand-out Issues

With a few moments study, you can see that while overall satisfaction with trains and stations in London and the South East was much the same as the national average (what’s the problem?), three issues stand out as having lower satisfaction rates – value for money in fares, availability of staff and how delays are dealt with.

Evidence-based campaigning

Smith is a great one for evidence-based campaigning and the possession of this comprehensive dataset – soon to be extended to buses and beyond – is the keystone of this approach. I agree completely – so few consumer representatives have access to facts about those they represent that are up to date, comprehensive, comprehensble – in a word actionable.

Yet is this not their fault? In the health service at least, there is now a mass of data collected from users that should in theory let them rate their health and social care services – anything from a hospital to a GP, a care home to the local authority.

According to Joshua Rosenberg SVP Product Management Google:

When data is abundant, intelligence will win
Putting the power to publish and consume content into the hands of more people in more places enables everyone to start conversations with facts. With facts, negotiations can become less about who yells louder, but about who has the stronger data. They can also be an equalizer that enables better decisions and more civil discourse. Or, as Thomas Jefferson put it at the start of his first term, “Error of opinion may be tolerated where reason is left free to combat it.”

Actually in my experience of consumer representation, when data is abundant, people get confused. Not a surprise since few are well-trained. Anyway conversations without facts are much more fun. Consumer advocates can get resentful if they feel that possesion of research-based facts downgrades what up to then has been their major skill – making consumer issue bricks out of emotional and anecdotal straw. Power drains away from the untutored lay representative to end up with some smart-arse researcher in head office who can talk about survey bias and sample weighting and such like. Indeed Passenger Focus has faced the logic of that and done away with boring old consumer representatives entirely.

Facts + Feelings

The truth is that this is the new game and consumer representatives have to marshal facts to back up their emotional commitments to causes dear to them and others. So how easy is it for users of health and social care and the bodies that represent them?

We are dealing with an apparently much bigger business here but compared to the 25 TOCs, the operating units are much smaller and numerous. Data collection for a survey that covers the waterfront of these services is a monster task – MORI heard from almost 2 million people for its 2008 GP Patient Survey (In England it sent out almost 5 million questionnaires). Passenger Focus gets about 30,000 completed responses. Response rates are about the same – 37% for the rail users, 41% for the GP survey. But this is deceptive. But never mind the millions – think small. This apparently huge business when you come down to the GP service or even at Primary Care Trust level is an aggregration of small businesses – some still with one or two GP s. Hospitals are bigger business.

QOF your QMAS: a toast to NHS use of user data

So the patient representative who wants to understand how local GP s are rated has to dissagregrate a mound of data. They have some homework to do. The NHS Information website tells them about QOFs and QMAS. QOF is a quality of outcome framework and the published QOF information was derived from the Quality Management Analysis System (QMAS), a national system developed by NHS Connecting for Health. QMAS uses data from general practices to calculate individual practices’ QOF achievement.

QMAS is a national IT system developed by NHS Connecting for Health to support the QOF. The system calculates practice achievement against national targets. It gives general practices, primary care trusts (PCTs) and strategic health authorities (SHAs) objective evidence and feedback on the quality of care delivered to patients. You will certainly need a drink after trying to make sense of that.

And the irony is that this data while based on user responses, is then absorbed into larger measurement systems designed for health care system management and not users. The user cannot use the information to base their choices on even if they are a stats whiz.

If a LINk wants to use local data whether for health or social care, it needs access to a skilled resource who can first deconstruct and then reconstruct data fit for that purpose. Any local LINk has to look out the data for say 30 odd GP practices available as a spreadsheet from their friendly PCT. While they are at it, they have to find out whether the practices have done any other surveys such as the IPQ survey and what have they done with that data? Check out those patient survey indicators which tell you that points have been awarded for doing this and that and that in the words of the quiz show ‘Points mean Prizes’ – in this case money.

And we have not even got to the Care information – look at the old CSCI Annual Performance Summary. Where is the user data in that and how is it gathered and interpreted for the assessment?

Finally if you are battered by the prospect of all these statistics and want to find out what the people actually say for themselves, you might find your way to sites like Patient Opinion collecting the stories from us the users. Except that very few of us actually bother.

This apparently contradicts the Google man’s other view:

“Everyone can publish, and everyone will

One thing that we have learned in our industry is that people have a lot to say. They are using the Internet to publish things at an astonishing pace. 120K blogs are created daily – most of them with an audience of one. Over half of them are created by people under the age of nineteen. In the US, nearly 40 percent of Internet users upload videos, and globally over fifteen hours of video are uploaded to YouTube every minute. The web is very social too: about one of every six minutes that people spend online is spent in a social network of some type.”

Spot the clue: the age of those who create blogs. This form of electronic self-recording in public is a young person’s game and guess what – most of them are healthy. Us oldies have yet to shed our reticence especially about illness. There are of course expert patient groups and sites that give their views- you can get a flavour here.

Citizen Mash Up

But how about the rest of us? Take a look at this clip http://www.youtube.com/watch?v=InI5n3NTvR4 based on a new unit in the Obama administration where technology is being used to encourage citizens to put their own proposals in a citizens’ briefing book and also ‘mash up’ ie rework data that their tax dollars have paid for to further their own ideas and interests. Participation thanks to technology is the golden goal.

Campaign to Reclaim Our Data

MAC will lead the campaign called ‘Reclaim our Data!” where users of health and social care services who provide all the responses for those millions of questionnaires get their data back in a way that they or their representatives can use with ease and confidence.

Here’s our suggestion – what we would call Data Ranches servicing perhaps several LINks where local user based data is re-mined and reformed for the purposes of the LINks. It is our data and we need to rescue it from local government and health management, the regulators and the Department of Health paymasters and use it for our own benefit in our own way.

Join us – all you have to lose are your ignorance and guilt at not knowing the facts. They are all there to be discovered and used.

Whose schools are they anyway?

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Whose service?

There has been a whole lot of very interesting debate over the last few years about who the health service belongs to but what I’d really like to know is, who does the education service belongs to?  I recently contributed to a government review of governance in schools (supposed to be published in October 2008 but still eagerly awaited).  I was there to put forward the case for parental involvement but met with a depressingly familiar reaction from the teaching professionals:  just who do these parents think they are ?

Who’s baking, who’s being heard?

Most schools will tell you they work hard to involve parents.  But scratch below the surface and you will find that many are adhering to a conveniently self-serving model of parental involvement where in fact parents do most of the work.  An “involved” parent is one who gets their child to school on time, helps with homework, encourages respect for teachers, bakes cakes for Parent Teacher Association events and turns up to parent evenings i.e a parent who is seen but not heard.  Have a look at the average home school agreement and you will get the message “parents and their children must….(do what the school says)” , “the school will…(do what it likes)”.

But the government is now seeking to give parents much greater influence in what happens in schools.  Since May 2007 all schools have had a duty to take account of the views of parents and are encouraged to set up Parent Councils to help them to do so.   They even produced a useful, if poorly publicised, toolkit to help them to do it. But as yet, there has been no research into how many schools have set up Parent Councils or similar parent-led bodies or what, if anything, their impact has been.  Are schools really beginning to take account of parental views or is it still the case that teacher (or the local authority) knows best?

Whose Views?

Some people argue that having parents on governing bodies ticks the box as far as parental involvement in decision-making is concerned.  This might work if anyone was at all clear about the role of parent governors. They are elected, but what is their role: to represent the forty or so parents who voted for them, to represent all parents, or simply to be themselves?  Do they really know what other parents think and if so, how?  Does the presence of parent governors mean that schools are absolved of their responsibility to find out for themselves what the generality of parents think or want?  And we should not forget that many schools struggle to find any parents who are willing or able to sit on their governing body at all (and having spent four years as a governor myself I could suggest a few reasons why that might be).

Who’s Sorry Now?

Over the past three and a half years I have been closely involved in setting up and running a parent-led Forum at my daughters’ school.  We had some successes but overall we felt that no-one appeared to be interested in our experiences or those of our children and that the school saw no real reason to respond to our concerns.  Last February we asked parents to identify the top ten areas where we felt things needed to improve.  They were all the same things we had been complaining about since the Forum’s very first meeting. Once again the school ignored us.  A few days later the Ofsted inspectors arrived and wrote a damning report which (surprise, surprise) identified all the same failings that the parents had been rabbitting on about for years (plus a few more that we could feel but not quite put our unprofessional fingers on).

When a school is in “Special Measures” it can seek the Secretary of State’s permission to get rid of the governing body (in many schools the only place where parents can have their voices heard on matters of strategy) and replace it with something called an Interim Executive Board (IEB).  This is what has happened in my daughters’ school  and in our case the chair and the majority of the membership was made up of paid staff from the local authority – the very local authority that had got us into this mess in the first place.  There is no requirement to include parents on the IEB or even for it to listen to parents and yet the IEB has all the same powers as a properly constituted governing body.  They can change pretty much anything they like and even, as in my daughters’ school, appoint a new Head Teacher without consulting anyone.

In whose name?

Anyone who knows anything about what happens when a school “fails” its OFSTED inspection, will tell you that what follows is a period of huge stress and anxiety for everyone involved – including parents - and yet at this very time when major change is taking place, parents can be effectively cut out of the process.   Our Parent Forum had to ask numerous times over a period of several months before the IEB even agreed to publish its minutes and we have not seen them yet although it is almost a year since the governing body was taken over and then disbanded.  We have also been asking to see a plan for the future of our school – what is going to change? why? when? and how will we know whether the raft of changes and new initiatives has made a difference?  No sign of that yet either although according to the school it was drawn up last July and they have been working to it since then.

The government is talking about streamlining governance arrangements in schools which probably means small governing bodies with people appointed for their skills rather than being elected by staff or parents. Pretty much like our IEB.  In governance terms this makes a lot of sense, creating small focussed and professional bodies with the skills to run these important institutions properly.  But our experience of such a body shows that little importance seems to be put on hearing the voice of parents – which is strange. These days, a skill set that does not include the techniques of gathering and acting on user and stakeholder opinion can be dismissed as dangerously introverted and incomplete. It is an old-fashioned management concept that refuses to share power and sees the participative approach as a threat to the quality of decision-making.

Whose Schools? (See where we started)

One way to address this might be to make Parent Councils or similar bodies compulsory in all schools and require governing bodies to listen to them.  Properly run and resourced Parent Councils, perhaps with their own dedicated staff, would foster new dialogues between parents and school senior managers and governors.  Institutional changes aside, we need to bring about a change in the culture of our schools and local authorities so that they understand that they are running schools for the benefit of children, their families and wider society and that they will only succeed in doing this when they by working in meaningful partnership with parents and carers and hearing what they say.