Public Involvement

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

In a personal piece reflecting on his own healthcare needs, Andrew challenges current thinking on ‘topping up’ and consults the welfare state’s urtext.

I have been back to the source for all things enlightened about the British welfare state - Sir William Beveridge’s magisterial and visionary 1942 report - produced in the darkest days of the second world war - entitled Social Insurance and Allied Services. I wanted to check on what he had said about people topping up their NHS care by paying a little bit extra on top of the what you get from the state as their entitlement. Did he predict that this would introduce the danger of a ‘two tier’ health service? Would Sir William agree with the modern day guardians of the NHS that “topping up” and “two-tierism” were heinous crimes to be discouraged at all costs? Far from it. The proponent of our universal and comprehensive welfare system did not say it had to be “all or nothing.” Quite the contrary. In fact what he did say on the subject sounds like it I could have heard it on Radio 4 only yesterday.

It only took the Beveridge Report until its ninth paragraph to state this as one of the “guiding principles” of the recommendations which led to universal social security and health care:

“social security must be achieved by co-operation between the State and the individual. The State should offer security for service and contribution. The State in organising security should not stifle incentive, opportunity, responsibility; in establishing a national minimum, it should leave room and encouragement for voluntary action by each individual to provide more than that minimum for himself and his family.” (ref. http://news.bbc.co.uk/1/shared/bsp/hi/pdfs/19_07_05_beveridge.pdf )

Unsettling - but creative

I understand why some clinicians and NHS managers find this clearly stated principle of “voluntary action by each individual to provide more than that minimum for himself and his family” unsettling. But we have to realise that this is fundamental to the thinking which underpinned the creation of the welfare state - and it looks like this principle is moving closer to centre stage once again in our social policy thinking.

Respectable voices such as Chris Ham’s are calling for “a Beveridge Report for the 21st century” to guide the settlement between state and personal contributions in a new welfare dispensation and we are standing by for the Green Paper on social care funding which is expected late spring/early summer.

New health partnership with primary care needed

We have just seen the GPs grudgingly and grumpily accept the new contract about extra hours but what about the person over 60 – and I’m one - who would like to pay for lots more than the routine 10 minutes from one of the GPs in his own surgery? I would like to talk about what I would like by way of routine diagnostic tests so that I can establish a baseline to compare with five, ten and more years down the line. Should I not be able to do this if I want to stay in control of my own health and thereby help the NHS at the same time by spotting potential problems before they turn into acute needs?

The more organised among us do this sort of thing with solicitors when we get older, so why not with doctors (and a GP would be cheaper even adding in the costs for the tests I might decide on). BUPA will do this sort of thing, but why can’t we pay the NHS for it and talk to a GP who knows us and has all our records up on the screen? That’s a choice I would like available to me – and “choice” seems to be important these days in the NHS what with GP surgeries opening in a Greater Manchester Sainsbury’s leading the Guardian to declare that the future of British primary care is now “down past the deli counter and opposite the lipstick stand”.

Oliver Twist got better than this

But here’s the rub. The Government has a line against “co-payment” towards the cost of care which effectively nullifies one’s NHS entitlement and punishes you - should you foolishly persist in proffering money - so that the full cost of treatment falls on the hapless patient. The Department of Health justifies this with a spurious appeal to equity: “If those who can afford it start ‘topping up’ their care it will create a two tier NHS. What about those who can’t afford [insert name of current wonder drug or high tech treatment]?” Anyone who thinks that there has not been in effect a two, three or more tier NHS since 1948 hasn’t got out much lately. Even Oliver Twist got a better reception than this and he wasn’t offering to pay a groat for the extra gruel!

You can search the NHS Acts in vain for the prohibition on co-payment. That’s because it is a bureaucratic diktat and not law.

Incentivise responsibility and opportunity

As someone who can foresee himself as a social care consumer somewhere down the line, I welcome a more creative and flexible approach that does not betray the intentions of the begetters of the NHS but rather reflects them while taking account of how we live life now.

And so I also welcome the appearance of GP services in Sainsbury’s if they really do provide much more flexible access to primary care for more people. I think that Sir William would also approve of “docs in store” for one very good reason. If we are serious about getting many more people off benefits and back into paid work, then there are going to be even more capacity and access issues around conventional primary care sooner rather than later. What better way to incentivise people to take responsibility and the opportunity to consult the doctor - younger men in particular - than just after they visit the deli counter so they don’t have to skip work, have their pay docked or risk losing their hard won job?

The Moore Adamson Craig Partnership is committed to the widest possible debate about the health service with a particular interest in encouraging users to make their views known. We look forward to making a contribution to the new Beveridge Report for the 21st century in which the voice of the active citizen and service user will be prominent.