More on MND film ‘Sarah’s Story’

We have inserted as a comment on the original piece in February this year, news about the ASA judgement following complaints that the film ‘was offensive and distressing’.

MAC Buds in May – why health is different from a PlayStation®

There has been only a couple of articles on our blog since the last newsletter – one was a review of Christine Hogg’s up to the minute history of public involvement in the NHS. I have bought my copy and would urge you to do the same if you are trying to make sense of the structures and techniques you need to do public involvement better and to understand why you are finding achievement so elusive. I read it to get some thoughts going for a training course for GP practices and their staff on understanding and engaging with customers.

Citizen vs Consumer

The point that struck home for me with my background working for Which? and other consumer bodies is the one where Christine argues that health is a more complex business than the consumerist model can accommodate. The example she chooses to make her point is that of mental health services users whose rights as citizens are more important to them than their role as a consumer of health services. Their choices are few and in some cases, they have to rely on their rights as citizens to exit the system or refuse treatment. She goes on to see a situation where expert patients and others who care for themselves ‘break out’ (in Christine’s words) out of the role of patient and become providers. She sees that service that is truly user-centred is the one where the users work with equal status with professionals.

Health is Different

This is a radical and ambitious view that goes well beyond the conventional consumer model of market influence where user and producer interract but remain separate. Christine’s view takes into account the fact that health is different from other things that people want. Jonathan Miller has written “Of all the objects in the world, the human body has a peculiar status: it is not only possessed by the person who has it, it also possesses and constitutes him. Our body is quite different from all the other things we claim as our own. We can lose money, books and even houses and still remain recognisably ourselves, but it is hard to give any intelligible sense to the idea of a disembodied person. Although we speak of our bodies as premises that we live in, it is a special form of tenancy; our body is where we can always be contacted ( Miller J The body in question Random House 1978 quoted in The World Health Report 2000 Health Systems: Improving Performance so ably edited by our Associate Angela Haden ) So being a consumer of health is different from being a user of a PlayStation®. We do not live inside something made by Sony – not yet anyway.

Better Customer Care

The reason for this revisiting of this debate is to explore my idea that the tensions embodied in the arguments about differences between being a user of a consumer good or service and being a consumer of health impact on complaint handling. A couple of the many things we have failed to blog about recently are the latest initiatives on complaint handling from the Department of Health and the Health and Public Services Ombudsman. The Better Guide to Customer Care represents a great leap forward in its simplicity, clarity and freedom from an obsession with process. There is an explicit overlap with the work of Ombudsmen and the six principles of good complaint handling. One of the unacknowledged things that make complaint handling – never easy – more difficult in the NHS is the difference between the complaint about health-related service received and the one about your electronic gizmo. As we have written before, emotion is the driver and the emotion involved in complaining about the place ‘where we can always be contacted’ is of a different order and magnitude than a complaint about an object external to us. The only example in the world of consumer goods and services when the emotional temperature came close to rising into the health temperature range in my complaint consultancy experience, was men complaining about repeated quality failures in their Range Rovers. The letters and calls made Jeremy Clarkson look like the soul of reasonableness.

While the Treasury’s advice about financial redress is worth reading, the question of money while it can no doubt help resolution, is not the clincher – recognition of how close to home any complaint about our health and the body we live in remains the best route to resolution.

Owning and Using Data

And if our body is our own, we argue in Andrew’s blog on Real Patient and Public Power, so is the data that we give the NHS by filling in questionnaires and being available to be measured and counted is data which patients and their families should be able to understand and use in any initiative to improve health and social care services. We would like to see the definition of expert patient extended to include an expertise in how user data can be put to work and create action for improvement and change.

Data Delusions

We are reminded how open to interpretation, questions on a checklist can be in one of the final publications of the Healthcare Commission as it morphs into the CQC – Listening, Learning, Working Together? The question mark indicates uncertainty about some of the findings – what the Healthcare Commission calls ‘mixed evidence’ about the standards of patient and public engagement. 98% of healthcare organisations claimed in their annual health check returns that they met core standard 17 which is the one about taking the views of patients and others into account when designing services. The snag is that there were a lot of negative comments from patient forums, voluntary organisations as well as the relevant local government committees (OSCs)  that trusts were failing to seek the views of patients and public. Mixed not to say contradictory evidence indeed. Which is the correct view?

Management – Delusions, Comfort and Safety

Christine Hogg tells us that it is a mistake to ‘believe that user involvement can be managed and voices captured’. She is worried that participation ’seems to be a management tool to be disposed of when it does not produce the goods’. Actually it is not being ‘disposed of’ that is the problem and of course the activity has to be managed – it costs money and involves resources so how else would organisations behave? No – what we have to be wary of is delusion. And the delusion amongst public and patient involvement managers is that the performance of the function – attended 10 meetings, produced 4 newsletters and ran a stand at the local fair or whatever and printed 5000 leaflets on topic X – is enough to tick the box. Delusion of this sort is after all a much more comfortable and safer place for managers to be than copping the comeback from relaying rude and disruptive comments from outside, uncensored and un-deodorised – a terrible assault on the sensitivities of one’s superiors whose lives are difficult enough without this vulgar din.

Thank you and farewell Health Commission – we knew you when you were still CHAI. How short institutional life is in the NHS, we Partners muse.

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.

Mugged in Soho by MND

“Text cloud” for this post below, created by www.wordle.net

Last week I went to the Curzon Soho to see Sarah’s Story, an awareness raising cinema advert produced for the MND Association. It runs for 90 seconds. Believe me, you don’t want it to be longer; your awareness couldn’t take any more raising at this intensity in one sitting. Brilliantly conceived and executed using full-on cinematic effects, Sarah’s Story graphically – and viscerally – conveys what it is like to be mugged by an unseen assailant who progressively assaults and steals your normal functions leaving your mind trapped in a malfunctioning body. In this case the “mugger” is motor neurone disease (MND).

In 2007 the MND Association did the poster campaign on the Underground “John’s Journey” which attracted complaints to the ASA, but lots of good publicity for their cause. I wouldn’t be surprised if the same thing happens this time, only more so. When you are trying to get over what it means to be assaulted by a devastating neurodegenerative disease, pulling your punches does no good. So full marks to everyone on the MND Association team who delivered this result and got it all donated, probably about £1m in production resources.

Sarah’s Story will upset many, including probably some people with MND. But that is unavoidable and part of what it has to do to get its message over. Sarah Ezekiel – the real life Sarah whose story it dramatises – spoke very movingly after the screening about her motivation to participate in the filming and production process. Using automated speech of course she said,

I’m so pleased that I was able to take part in ‘Sarah’s Story’. I think the advert is shocking and disturbing and reflects the devastation that MND causes. I hope that it will raise more awareness and we will be nearer to finding a cure.”

Here’s something else I find shocking – Sarah’s Story has a “15 certificate” for cinema release. Younger British filmgoers don’t need protecting from the truth of what it is really like to have a devastating illness, do they? Perhaps the British Board of Film Classification would like to explain just who they think they are protecting and from what by slapping on this restriction? Of course having MND is horrible: that’s just the point!

As well as the microsite with the advert and stills from the filming, if you are into the techno side of modern film-making, then spend 13 minutes to watch the “making of Sarah’s Story” for a behind the scenes look at how this got from concept to screen. Then you will appreciate where all the talent and money goes to make 90 high-impact seconds on the big screen.  You won’t forget it easily.  Nor should you.

New Health Bill moves towards individual commissioning budgets

The Health Bill 2009  introduced into Parliament on 15 January boosts the personalisation and choice agendas by enabling direct payments for healthcare to people in England.  There are already 60,000 people receiving direct payments for social care.  This is a big step towards the objective of individualised commissioning which joins up health and social care.  MAC strongly advocates this for people with long term conditions who wish to take greater degrees of control over planning and delivering their own comprehensive services.  It also points towards the achievement by 2010 of individually agreed care plans. That is a key reason why we worked with the Motor Neurone Disease (MND) Association to create the MND Year of Care commissioning tool, which will be invaluable in creating and costing individual care plans for people with this condition. 

All of this was trailed in the Darzi Next Stage Review report High Quality Care for All along with the suggestion that individual budgets might be most advantageous to people with complex and generally deteriorating conditions such as MND or multiple sclerosis or Parkinson’s disease.  We agree, provided that assessment processes linked to budget setting do not become burdensome in the face of what can be a rapid pace of deterioration in these neurological conditions.  Using the MND year of care tool to predict needs should reduce the need for reassessments.

The Health Bill coincides with an NHS Confederation report claiming that direct payments could “revolutionise” patient care.    Personal Health Budgets: the shape of things to come? argues that giving patients control over healthcare funding could provide enhanced outcomes and change the nature of the patient-professional relationship.  We hope personalised budgets and individualised commissioning for those who want to use it with support and help available from expert 3rd sector organisations will be the shape of things to come. 

As Secretary of State Alan Johnson said launching the Bill, “People rightly have high expectations of the care the NHS offers, and they want more control over their own health – which is why the bill will give more power to patients and drive up the quality of care.”  Conservatives and Liberal Democrats also welcomed this, so the chances of making progress are even better. 

Of course there are the inevitable nay-sayers amongst some of the self-interested professional groups.  Unison  warned of  a “real danger of creating a situation where patients use their personal budget ineffectively and then, like Oliver Twist, go back for more. Or, patients will be persuaded to top up their budgets from their own savings, undermining the founding principle of free healthcare for all.”  Unlikely we think, especially if there is s strong link between users and 3rd sector bodies to advise them about making good choices, or even holding the budget for them and spending it with their agreement. 

The BMA made the rather eeyorish observation that it was “currently very unclear how such a system would work in practice – for example, what would happen when a patient’s budget ran out? Moreover, this policy seems further to establish the idea of healthcare as a commodity, which the BMA does not believe is in patients’ best interests.”   Those presently in control would say that sort of thing, wouldn’t they?  

In rebuttal, we can think of no one better than Jon Glasby,  professor of health and social care at Birmingham University,  who said, “personal budgets have allowed people in social care to be much more imaginative and use funds more carefully than the system did. There is no reason why this should not happen in health.  However, it will need to be carefully introduced.” 

An agreed individual care plan is the essential first step to identifying a personalised budget.   Real choice, as the MND Association said in their response to the Health Bill’s publication, also means the choice to opt out of personal health budgets and still receive high quality and timely care and support.   Expert organisations like the MND Association which are close to their members and understand in great detail what it is like for individuals, carers and families to live with a devastating disease feel that even with the risks, individual budgets are worth exploring.  

Helping patients and carers raise their expectations about what should be acceptable is part of this.  As Heidi Macleod, Director of Care Development at the Motor Neurone Disease (MND) Association said,  “we support and promote the principal of increased patient choice. This initiative has the potential to improve control and flexibility in care.  A further benefit is raising the expectations of patients about what should be acceptable in terms of quality care and shared decision making so that they can make better choices, including end of life decisions, for themselves.”  MAC believes that with the right kind of support, that is a prize worth striving for.

Mining the NHS Operating Framework 09-10

 
The NHS Operating Framework 2009-10 for England  (OF) sets out a brief overview of the priorities for the NHS in the next financial year.  PCT managers are sweating over the framework as I write, producing their operating plans for the same period to reflect these national ”must dos” and their own commissioning strategy objectives.   And there will be no relief over the hols for many – in London we have to have our plans to the SHA by mid-January so Christmas reading can’t be avoided.

At its most basic the OF sets out four domains.  Each of these can be mined for opportunities to advance involvement and engagement and to further partnerships between statutory and 3rd sector bodies.  We shall be banging the drum about these opportunities with out clients in the New Year – and we believe NHS managers will be ready to listen, especially as World Class Commissioning competencies are making the same sort of demands.

1. The health and service priorities for 2009/10:  This is about strengthening the focus on subsidiarity  -  the first use of that useful EU word I’ve seen in the NHS – while still delivering national priorities in the current 3 year comprehensive spending round .  How they do it is up to each PCT.   The “PPI prize” in this is succinctly put on the DH website:  ”Patient experience is the final arbiter of success.”

2. A system designed to deliver quality:  The Darzi mantra to make quality the organising principle of the NHS gets the emphasis here- and so it should.    Each SHA has its “vision” of Darzi – including Healthcare for London – and the OF focuses on the levers and incentives to further build on these.  Right at the front is staff engagement for the benefit of patients and the public.  Hurrah! Finally the NHS has woken up at the 11th hour to the fact that its staff are the best enggement tool it has.  For that tool to do its job, people working in the NHS must be treated fairly and rewarded well in return for consistently excellent performance. 

3. The financial regime:  The NHS has to go further to ensure it makes the best use of taxpayers’ money.   The comprehensive spending round made it clear that the NHS tap would be turned down after two years of plenty even before the world financial system nosedived, so no one should be surprised by the admonition to continue to do better with less in the near future.  “Delivering Darzi” is a big part of that of course.  But so is learning how to get close to customers (aka patients) and realising that they have choices and voices, especially in primary care.  That’s where the biggest changes have to take place.   All the solutions to the “problems” of secondary care lie in primary care.

4. The business processes:  Planning should be based on locally led decision making  – subsidiarity again -and maintaining the emphasis on genuine partnership working at a local level with local government and other partners. For “other” in this part of the OF read not only 3rd sector bodies and social businesses but really any health and social care organisation which wants to get into delivering public services to the right level of quality and price under the NHS brand.  The old certainties about whose job it is to do certain things are on the way out.

If you are wading through the OF because you have to, then persevere because it has some really positive things to say about new ways of doing public business. If you’ve given it a miss up to now, then think again and don’t judge the OF by its rather austere cover.  Anyone wanting to make connections between NHS “must dos”, opportunities for user involvement and more ways to develop the mixed economy in delivering public services will find plenty they can use in here.  

And keep an eye out for the PCTs’ Operating Plans 09-10 appearing from mid January to see how they are tackling all of this.  Will they all be up to the challenge?  If you find some outstanding examples of local planning, you can always post it here.

A Merry December Newsletter

LINKSLEARNING – hot off the press

Fresh on the main Moore Adamson Craig site, is the first article under our LINKsLEARNING banner – how we set about building the Wandworth LINk website from scratch and at speed. Check it out here: http://www.mooreadamsoncraig.co.uk/LINks.php and if you have any questions about what we did, contact me (email info here).

Bradford in the lead

We report on new developments in Bradford where the first of 152 GP-led Health Centres has opened. Andrew Craig points that there is a big window of opportunity for social enterprises to be set up with the latest news that Ministers have agreed a 3-year guarantee of uncontested contracts for new social enterprises in the health sector. So future social entrepreneurs need to get in quick before the arrival in this market (the current term) of what Andrew characterises as “aggressive super Foundation Trusts moving into primary and community health care“. http://www.publicinvolvement.org.uk/2008/12/do-the-citizens-of-bradford-know-something-about-primary-care-that-londoners-dont/

Best Practice

Also in the lead is the Motor Neurone Disease Association. The Year of Care commissing tool features as case history No 1 in the National Audit Office’s report on End of Life Care (http://www.nao.org.uk/pn/07-08/07081043.htm ) as an example of best practice in the area.

The Public Accounts Committee is taking evidence on the report on 17th December 2008.

After that they and all the rest of us can perhaps wind down for a decent holiday and a Happy Christmas – something we wish for all our readers.

Engaging Health & Social Care Communities Online

Just published on the main Moore Adamson Craig site – a case history of building the website for the Wandsworth LINk:

Engaging Health & Social Care Communities Online – setting up a website for Local Involvement Networks (opens as Adobe PDF file).

Best Practice in End of Life Care – MND Association case history

This week the MND YOC (the Year of Care commissioning tool) got prominent exposure as a featured example of condition-specific good practice in the National Audit Office’s End of Life Care report.  The Public Accounts Committee (PAC) will now conduct hearings on the NAO report on 17 December – open to the public - and then prepare its own report with recommendations for Government (to which the Government must make a published response).

There is something very satisfying about seeing work that MAC partners and associates have laboured long over for clients getting noticed in the right places.  So it is with the MND YOC.  Launched in the summer of 2008 after almost two years of work, it is now available electronically to all in the National Library of Health’s specialist neurological library, together with the “Learning from Leeds” report on how the views of people with MND, carers and staff made a real difference to the final version of the tool for commissioners.

The witnesses before the PAC will be the CEO of the NHS, David Nicholson, and the ”cancer czar”, Prof Mike Richards.  Given the long-standing interest MPs have in the inequitable provision of end of life services around the country and the well-deserved tenacious reputation of the PAC under its chairman Edward Leigh MP, the encounter on the 17th of December should be worth watching.   Expect to see a bit of squirming.

MAC is delighted to have helped the MND Association make a contribution to stirring up greater interest in this subject and we will be following the PAC’s work on end of life services closely.

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