Public Involvement

“Cause More Trouble”

That was one piece of advice from David Nicolson, Chief Executive of the NHS speaking at a Department of Health conference 8th July to those representing the patient interest. The venue was the cathedral-like space of the Lawrence Hall in the Royal Horticultural Halls before an audience of specialists and enthusiasts working in the area of people participation, involvement, engagement - the vocabulary changed as fast and as frequently as the sky over Wimbledon. Many of them had gathered before in halls to be assured that the future of patient participation was now safe and on a good road only to be disappointed by the reality down the line. Does the NHS this time have a new story and a new song that will not just promise a new dawn but deliver it?

NHS - the New Story and why not? - a Song as well

The speakers assured us that this time it would be different and I was tempted to believe them. What has changed for the better? The NHS now has a draft Constitution which will fix the customer at the centre of the system. That system will be based on World Class Commissioning. The Constitution will define the expectations and service aspirations. The commissioning process and the associated systems will assure compliance. Not a national target in sight and now we have local service designed and commissioned with local people and their needs in mind. Hence the Merle Haggard lyric celebrating the new freedom that will flow from commissioning and delivering for the local community. Going with the show biz flow, we conference attenders did get a playlet that dramatised the present and the future, daring to look 5 years into the future. Alas one thesp running to embrace this vision, fell over Meredith Vivian’s dog. I was cheered by this note of realism that reminded us that there would be obstacles in the road to the future but nevertheless the show went on.

The ducks seem to be all lined up. The juggernaut is rolling. Satisfaction with the NHS as measured by Ipsos MORI has never been higher. PCTs have never had so much money. The presses at the Department of Health have been rolling without pause or interruption - in the period between 9th May and 3rd July the Department pumped out no fewer than 7 publications including the final report by Lord Darzi.

This link will take you to the consultation on the constitution. The closing date is 17th October this year.

Ben Page of Ipsos MORI provided a valuable corrective to the mood of euphoria in the form of some facts about the gap between the promise and the reality. Almost everybody thinks being involved is a great idea - 82% according to his data support the idea of being involved but at the end of the day about 2/100 actually turn up. But everybody likes organisations that offer the chance of getting involved and Ben told us why South Tyneside had been recognised this year as the Best Achieving Council. Their ads showed the engagement process the Council favoured “We Asked, You Told Us, This Is What We Did”. Closing the loop and reporting back on what happened as a result of a consultation or engagement programme is emerging as the key ingredient in sustainable engagement programmes. Ben made the point that the best regarded local authorities were on the whole the best known ones. Information is a vital precursor to engagement.

Keep telling that story or indeed singing that song.

Our passions remains the same but we have clothed our mix of news and views in new clothes knitted together with Wordpress which Dan Wardle of Surveylab our adviser in these matters assures us will bring the blog into the world of Web 2.0.

On www.publicinvolvement.org.uk recently…

A MP has asked why we are all so miserable? Are we becoming a nation of miserabilists never happier than when whingeing? We take a look at the latest Annual Report from the Financial Services Ombudsman for some facts and figures on the nation’s complaint behaviour in the markets he covers. The principle of being fair to consumers is all the rage in regulatory circles and we look at the new laws banning unfair practices backed by new OFT research that tells us that ‘consumer detriment’ costs us as consumers over £6billion pounds a year. We join up our learning on complaints with our thinking on user engagement and ask - are they linked?. Can the complainant become the engaged user for the longer term?

Finally just to keep give you a chance to tell us your experience, there is a mini-survey for parents of school age children to complete about what they did when they had a problem with the children’s school.

Have a good summer.

The New Miserabilism?
Complaints and the people who make them are often seen as confirmation of the new miserabilism - a condition that led an outburst from Tom Harris MP asking why everyone is so bloody miserable in a world where in the UK at least, we have a lot to be grateful for. A new book on complaining behaviour by Julian Baggini “The Complaint Book” (www.thecomplaintbook.com) mentions a sub-set of chronic complainants labelled by a psychologist as “help rejecting” people who prefer moaning to being given a solution. The Victor Meldrew persona certainly hit that vein.

The Ombuds View
What does the Financial Ombudsman say about all this in his latest latest Annual Report? There were two areas where numbers of complaints rose very sharply - complaints about current accounts which saw a five-fold increase and those about payment protection insurance up from 1832 in the year ending March 2007 to 10,652 by March 2008. These are both interesting example of how complaint volumes can now be driven by media and internet campaigners - chief amongst them Martin Lewis whose site moneysavingexpert.com leads on these two areas of consumer problems suggesting templates for letters and other encouragements to complain against these practices.

Hire your own complaint handler?
Another phenomenon identified by the FOS is the rise in the commercial complaint handler. In almost one in five cases referred to the Ombudsman service, consumers used the services of such a company. This is strange - after all the service is free to use. However it may be because the consumer believes that the product is too complex to understand let alone complain about - the Ombudsman specifically mentions pension and SERP-related cases where the complaint handler makes unrealistic promises about the money that they can get for the consumer with a problem.

The New Community Agenda
The FOS has set up an Access working party. The Board had asked Lord Hunt of Wirral to look at access and transparency issues in particular and now the service is looking at implementation. Walter Merricks is now looking at what he calls a more active community agenda - awareness-raising with outreach programmes. He is already claiming some success with more under 35s and more women complaining diluting the historic profile of the Ombuds-user as the retired male with a duff pension, time on his hands and a new skill in word processing.

The Heavy Mob
As Walter gets interested in the ’soft’ skills of awareness raising etc, the OFT and BERR are looking at the role of the enforcers and how that sits with the new emphasis on principle-based law. 23 laws have been repealed and now as of end May this year we have The Consumer Protection from Unfair Trading Regulations which implement the Unfair Commercial Practices Directive. 31 specific trading practices - my favourite is the one that bans the ‘wolf in sheep’s clothing. See all 31 practices here (links to PDF file at OFT).

As part of this new approach, principled but pragmatic, the Office of Fair Trading and the Department for Business, Entreprise and Regulatory Reform (BERR) are looking to use the improved complaint data that they are getting from sources such as Consumer Direct to direct the searchlight towards those areas of the greatest consumer detriment. The OFT has recently published some more work in this area in April 2008. The amount of consumer detriment was estimated at £6.6 billion.

Remember “Jewels to be Treasured”?
So the miserable complainer is getting taken very seriously indeed. Long ago in another political area/ universe, the then Secretary of State for Health Virginia Bottomley characterised complaints - and by extension we suppose those who make them - as “jewels to be treasured”. A leap across time to the present brings us back to the health service and our current pre-occupation with health and social care services user involvement and engagement.

Complaining and Engaging
After all the complainant is someone who has made the choice to become engaged to pursue an individual goal - apology, correction, compensation. That initial individual impetus to action can cross-over into the more sustained and collective experience of engagement. We have noticed that many of those who come forward for patient forums and liaison groups have had an experience of health provision which has made a deep impression on them. The experience of complaining can act as the recruiting sergeant for patient engagement - the challenge of that is a double one. We have to understand how to convert what is often a negative into a positive directed towards improvement for all rather than vengeance on the few associated with the initial failure and we must make the experience of joining a patient body such as the LINks one that sustains commitment over the longer term.

Dare to Discuss Being Happy
My thought is that we have to turn to the work highlighted at the recent summer party held by the Ipsos MORI Social Research Institute. Yes of course it rained but the topic was a daring one - Happiness. The research shows that happiness once a reasonable level of material comfort has been reached comes from elements in our lives associated like getting married, being a member of a faith group and attending services regularly, using some extra leisure to spend time with family and friends and staying healthy. This last attribute will help you get beyond the trough of the middle years - the slough of despond linked in particular with having teenagers sharing the family home. Once they have gone, the happiness line slants upward only interrupted by the death of a spouse.

Can we add to the list - membership of a LINk?
Or perhaps participating in a quick survey?

As you can see, we’ve upgraded www.publicinvolvement.org.uk. We hope you like it.

We transferred over all posts from this year, but if you’re looking for older posts - these can all be found here at http://www.publicinvolvement.org.uk/May2008.html - we’ll try and improve this so these archives are easy to find when Dan has a spare moment.

The title has a bit of the ring of a rock anthem about it, don’t you think? Up, Up and Away by the 5th Dimension? Or perhaps one of these inspirational business books that promise to get you out of that career rut. A big hallo then for the review of the Financial Ombudsman Service (FOS) by the Rt Hon Lord Hunt of Wirral MBE available at http://www.thehuntreview.org.uk/

I took a look at what Lord Hunt (LH) identified as “the most contentious and difficult issue for this Review“. It got a chapter of its own called “Transparency - Performance Data”. The consumer bodies wanted lots of information with poorly performing companies ‘named and shamed’. The companies resisted it for various fairly predictable reasons - one of which was that “consumers would not understand the information and might be misled by it.” So easily confused they are - poor things. So consumer orgs for and companies against. LH said he was disappointed by this polarised response but he could hardly have been surprised.

In the event he went on to conclude that information on complaint performance is relevant and that there was “no legitimate justification for withholding it as a matter of principle.” The FOS already publishes an anonymised benchmarking table showing the top 11 financial groups. What is surprising is not that the worse performing companies want to keep their performance under wraps but that, according to Walter Merricks, the chief Ombudsman, “the best firm (does not) seem to want to promote its performance positively“.

Hunt suggests a mix of carrot - an Award for exceptional improvement in complaint handling - and stick - the Worst Performer identified in each of the markets the FOS covers by reference to the rate of upheld complaints. Much remains to be decided and the negotiations will go on for a while I would guess. Hunt concludes by saying he finds “openness both desirable and inevitable“. Amen to that.

All this manoeuvring brings to mind how the public sector has addressed the challenge of openness. Public sector performance in this area is a model of openness. If you look at the reports of the Healthcare Commission and the Parliamentary and Health Service Ombudsman, you will find the parties listed and named.

Case No. E.1947/02- 03 Discharge Procedures
Poor transfer arrangements and nursing care
Complaint against BUPA Care Homes and Bexley Bromley and South East London Strategic Health authority, formerly Greenwich Health Authority
Summary of Case
etc. - this is from an old Ombudsman Case - we will await the revised format of cases promised for any day now.

The Healthcare Commission also names the organisations involved in the complaints it deals with - a job it is giving up in April 2009. Escalated complaints go straight to the Ombudsman after that.

So perhaps in preparation, Anne Abraham’s office is doing a consultation on principles of complaint handling - get your comments in by 12th August even if they are covered with sand stuck on with Factor 50. Great reading for the beach.

Read more about how M-A-C approaches complaint handling and our account of complaint handling at a London hospital.

Since our announcement last month, M-A-C has been busy working with the Wandsworth Care Alliance to launch Wandsworth LINk. The website www.wandsworthlink.org.uk went ‘live’ this morning.

We do not get many comments on the blog so we were delighted when Michelle Valentine, the author of the piece that follows, was sufficiently interested by an entry that Andrew Craig wrote in March on complying with Section 242 to note in our comment box “This new duty could be quite a powerful lever for disabled people, and it will be interesting to see how this duty will be implemented alongside the duties imposed by the DDA 2005 to involve disabled people. I would welcome a discussion about this.” This was rather unwise of Michelle because of course we immediately invited her to kick off such a discussion. Her article follows.

Michelle has her own consultancy Disability Forward Ltd and we know her from her work with the BSI Consumer and Public Interest Network. You can reach her at michelle@disabilityfwd.co.uk

Section 242 is shorthand for the general legal duty on the NHS to consult and involve service users in everything to do with planning, provision and delivery of services, which has applied since 1st April this year. The Disability Equality Duty, which applied to all public bodies including the NHS from December 2006, requires it to pay due regard to the need to:

• Eliminate unlawful discrimination;
• Promote equal opportunities;
• Eliminate disability related harassment;
• Promote positive attitudes towards disabled persons;
• Take steps to take account of disadvantage experienced by disabled people even where this involves treating them more favourably
• Encourage participation by disabled persons in public life;

NHS bodies also have to meet the specific duty which requires them to:

• Develop, publish, and monitor progress against a disability equality scheme
• Involve disabled people in the development and evaluation of schemes
• Produce single equality schemes but they MUST show how they meet the DED specifically

The two most important aspects of the Duty which should dovetail with the Section 242 obligations are the need to take a strategic approach which addresses the causes of inequality and lack of access to services at a macro level, using the social model of disability, and the duty to effectively involve disabled people in policy scoping and policy decision making as well as monitoring policy implementation at the coal face.

So, taking a strategic approach that uses the social model of disability, what does that mean here? Let me use an example in relation to social services, An individual complains that the accessible lift fitted in their home by social services has been working intermittently for several months. Another individual complains that they have not used the equipment provided to them by social services because they ‘manage as they are’.

Firstly what’s the link between these two cases? To answer this NHS bodies need to go back to their procurement strategy and your contract processes for equipment and adaptations for older and disabled people and ask:

1. Has the procurement strategy effectively involved disabled people and industry representatives?
2. How has their input influenced the strategy?
3. Has the strategy been equality impact assessed, properly?
4. Have the contract arrangements ensured that there is a proactive and effective equipment maintenance process which does not rely on the disabled person dealing with lots of different companies?
5. Is there ongoing support for people who have equipment provided, but may be fearful or reluctant to use it without ongoing support and advice from someone, or may have felt that they were given something that they didn’t want and weren’t given what they did want?

But what about the social model of disability? Some readers may not have heard of this so I will put it in very crude terms. There are basically two ways of understanding how disabled people are viewed by society. The medical model basically means that society sees disabled people as the problem because we have ’something wrong with us’ and who need medical and other interventions to make us more like non-disabled people, i.e. more ‘normal’. However, those who operate within the medical model and the NHS is really still doing this, will focus on the disabled person as the one that needs help and assistance. The social model turns this on its head and states that it’s society which is the problem, because it has not designed itself to include disabled people, whether in terms of the physical built environment or in terms of employment, services or any aspect of civil life. So the focus for change is on organisations, employers, service providers, government etc. Of course, reality is never so clear cut. As a visually impaired person I carry a symbol (white) cane so that others are aware I cannot see well, and I also have adaptive technology to make computer use much easier. I wouldn’t be without these, any more than a person with Diabetes would be without their insulin, but I still expect employers and service providers to meet their legal duties and involve us to enable them to make sensible decisions about how to improve things.

So to go back to the faulty lift and the unused equipment, it would be tempting for the authority to see both cases as unconnected and related to those individuals, but if they answered the questions above and got a no, or a ‘we can’t evidence that one way or another, or it’s supposed to happen but we are not sure it does’ then how can they say the problem is related to that individual?

A much better understanding of what a strategic and thorough approach to equality really means has to be developed in Section 242 and the Duty are going to be effective.

Secondly, In order to ensure effective implementation of both duties there area couple of other things that NHS bodies MUST address:

1. They must understand the difference between consultation and involvement. Often the two terms are used interchangeably and this should not be the case. Disability Forward would suggest the following definitions:
   • Consultation - a passive process where the agenda has already been set by the consulting body and where there is often no clear evidence of how consultation responses have influenced thinking
   • Involvement - a professional process of engagement and in-depth working between disabled people and organisations, and which delivers tangible benefits and outcomes for BOTH parties.

   The Disability Rights Commission (now replaced by the Equality and Human Rights Commission) has produced guidance on involving disabled people, which is a good start but is only that.

2. Understand what ‘representative group’ means
   Disability is a complex issue, not all people with visual impairments have the same access requirements, some people have multiple impairments, and some people may have access requirements but don’t see themselves as disabled people. Therefore any attempt to work with ‘representative groups’ needs to be much more sophisticated than it has been generally to date.

Overall I think as they say on TV Section 242 and the DED were ‘made for eachother’ but as well all know few marriages work without give and take and understanding.

Michelle Valentine
Director
Disability Forward Limited (contact information)

That Fabulous Beast
Loyal readers will remember from past blogs our somewhat over-extended metaphor of that fabulous beast the greater spotted LINks seen prowling the precincts of Westminster - was the beast to be set free and be seen all over England as the new embodiment of patient participation? Would it flourish and survive where so many other species of patient engagement have failed and died out?

Well in Wandsworth, we will be helping answer those questions. We will be establishing the best of habitats for this new animal working with the Wandsworth Care Alliance and Wandsworth Borough Council to set up the Wandsworth LINk - one of the first in the country.

We have been writing about LINks in our blog for a long time now - the first article was in July 2006 and with regular mentions since then. We are now about to discover the difference between being the commentator and taking the role of participant. The thread that unifies the two is being able to learn and draw some lessons from the work.

We are getting off to a very fast start since Wandsworth is an area that Val Moore and Andrew Craig know very well. They are already plugged into the local health economy in a number of ways - at the grassroots as members of the Balham Park Surgery Patients Liaison Group and then at an institutional level, Andrew Craig as the Lay Member on the PEC and Val Moore as a non-exec at St Georges Hospital.

All the partners will be working on the project and we look forward to doing a good job assisting the Wandsworth Care Alliance as it builds a new structure for the users of health and social care services in Wandsworth.

Business as Usual
In the meantime, we will be continuing the blog with our usual eclectic mix of articles - last month, we gave our views on the new proposal for a single door entry point for citizens who have a complaint and returned to the source with some musings about Beveridge’s original plans for the NHS. The last newsletter pointed out our propensity to value things like post offices only when they are threatened with extinction. This one has focused on new life for patient engagement in the form of the new LINks structures.

Eirlys Roberts - a personal tribute

So with these thoughts of death and renewal, it is the moment to pay my own tribute to Eirlys Roberts who died on 18 March aged 97. Maurice Healy one of her adjutants at Which? described her correctly in his Guardian obituary as “the mother of the modern British consumer movement“. Michael Young, later Lord Young of Dartington, is credited as the founder of Consumers’ Association, publishers of Which? Magazine. Founding was what Michael was good at - if what he set up survived, it was because he found/left in place people like Eirlys with the passion and skills needed to make sure the infant organisations survived and prospered to give a life time’s work to people like me.

The prose style Eirlys required all the Which? writers to observe, was in her words “to use concrete nouns, not abstract ones, the active not the passive voice, short sentences, short paragraphs and short Anglo-Saxon words“. Each piece destined for Which? was edited at least 4 times and pared back to the libel-free, truthful minimum. An Eirlys editorial session was a risky and exhausting encounter for those of us with a disdain for boring detail and a taste for wordy generalisations.

I joined Which? in 1969 just before the launch of Money Which? The Which? Guide to Contraception had been published shortly before. The Eirlys style was a fabulous formula for success - money and sex discussed in that clear, rational Which? style that helped the middle classes conquer their embarrassment at their materialistic and sexual urges and gave them permission to be interested in both subjects, discussing the relative qualities of their fridges at the dinner table, probably even in bed. (The quality and price of white goods in those less affluent days occupied the place in people’s conversations that entire houses and kitchens do now.) Reason reigned and consigned the vulgar emotions of envy and acquisitiveness conjured up by the adman to the bin (did we test those I wonder?).

I took those words of Eirlys’s from the Times obituary where as a classicist, she would have been amused to share the obituary page with Charlton Heston, the great charioteer of Ben Hur.

Vale Eirlys and thank you for that style and way of thinking - remnants of which I still cling to even now particularly when discussing patient engagement scenario situations at the cutting edge of positive citizen participation strategies rolling forward to the big picture event horizon of Local Involvement Networks. Clear enough?

The Public Administration Select Committee are in the news for advocating a single entry point for public services complaints.

Para 42. “We agree with Sir David Varney and the National Audit Office that the Government should explore the scope for a common access point nationwide for all non-emergency public services. This would provide a single point of contact for impartial information on where to make a complaint or seek redress. We restate our predecessor Committee’s recommendation in favour of just such a service-’Public Services Direct’-which would offer an easy access, one-stop-shop approach to a complex web of public services. Public Services Direct should be both a gateway to government organisations and services, and a source of basic advice to public service users. It would act as the starting point for people unsure of how or where to lodge their initial complaint, and would provide them with the appropriate information and guidance.” When Citizens Complain, Fifth Report

In the terms we use about complaint handling, the above is a referral site. What the public want is a problem-resolution site. Most people build complaint handling processes offering an initial point of contact and then a second one if the problem does not get sorted there. Where the complainant wants to see Houses of Correction, the public service build great Palaces of Escalation. For resolution, read referral.

The committee quotes this example:

“…for agencies of the Department for Work and Pensions complaints are dealt with initially by staff at local level. Complainants can then escalate a complaint to line management as necessary. If they are still unsatisfied they can raise the case directly with the Business Chief Executive, and then appeal to the Independent Case Examiner.57 Finally, the Ombudsman can consider the case if it is referred to her by a Member of Parliament.”

The big growth in the public services is in the intermediate complaint handling organisations:

“There are also an increasing number of independent, or quasi-independent, complaint review bodies to which complainants can turn before raising matters with the Ombudsman. These intermediate or second-tier complaint handlers exist particularly where the Ombudsman receives a large number of complaints about an organisation. They include:

• The Adjudicator’s Office, which investigates complaints about HMRC, the Valuation Office Agency, the Public Guardianship Office and the Insolvency Service.
• The Healthcare Commission, which at present is responsible for reviewing complaints about the National Health Service (NHS) or independent healthcare services that have not been resolved at local level. From April 2009, however, the Healthcare Commission will no longer have a role in complaints handling, as complaints processes for health and social care will be brought together and the system streamlined to emphasise local resolution of complaints.
• The Independent Case Examiner, who reviews complaints about DWP bodies including the Child Support Agency, the Pension Service and Jobcentre Plus.
• The Independent Complaints Reviewer, who investigates complaints about a range of organisations including the Audit Commission, the Charity Commission, the Housing Corporation, the National Archives and the Land Registry.”

These organisations are sort of junior organisationally specific Ombudsoffices but without the clout or the power of being the last stop.

The committee’s suggestion for a one stop shop will merely add another layer to an already complex and expensive system that institutionalises delay, decreases satisfaction and increases escalation. Hooray for the Health Service that has abolished the middle layer.

Also people at entry points for complex multi-organisational or multi-cause complaints systems while often recruited from the ranks of the beginners, the juniors and the newly-joined have to be the best qualified people in the whole system. They must have extraordinary gifts of diagnosis, have access to completely up-to-date knowledge about who does what together with telephone numbers for named individuals and be possessed of extra-ordinary personal attributes of empathy, listening skills and clarity of expression.

Do you think ‘Public Service Direct’ could deliver that? How many years would pass as everyone from departments sat round tables evolving protocols, manuals, interrogative algorithms, contact detail updating processes? There would of course be a need for an independent complaint handler for complaints about Public Service Direct. Decades would drift by. NHS Direct anyone?

What surprised me finally was not to see NACAB’s name listed amongst those supplying evidence. They are at last trying to grapple with the complexities of how best to concentrate and manage resources to advise people on the whole range of public services and products. Give them £10 or £20 Million for 7 years and tell them to set up the front door - they seem to be well down that path already. See http://www.nacab.org.uk/ and their change programme:

Year one (2005/06)
In the first year, we had a good look at what we were already doing, produced an award-winning film showing what we might look like in the future and completed a number of key initiatives:

• designing a new approach to service delivery
• piloting an out of hours, telephone, email and chat service
• setting up three centres to pilot the new approach to service delivery
• developing a set of national referral protocols
• commissioning the production of a new advice kiosk

Year two (2006/07)
Having successfully completed year one we are now moving forward by:

• establishing a single national telephone advice number
• setting up a national email advice service
• improving access to web based information and services
• introducing the new approach to service delivery
• considering how interactive (chat room style) advice can best be used
• forging productive partnerships with other agencies and advice providers

And it goes on.

It is not a question of avoiding re-inventing the wheel - more a question of not adding yet another redundant wheel when we already have all the wheels we need to propel this particular vehicle thank you.

Read more about M-A-C’s complaint handling consulting, and download templates for reviewing and implementing better complaint handling at www.mooreadamsoncraig.co.uk