I don’t think anyone can appreciate the truth of this statement until they have been a patient themselves. Until recently, I had always been a fit healthy person. I had worked for years for the NCC – an organisation promoting consumer rights and so I thought I knew what “consumers” of the health service felt like. Then I joined the MAC partnership training and consulting about user empowerment in public services including health and I was even more sure that I understood what “user empowerment” meant. And, for the last few years, I have been an active member of the Patient Group at my GP surgery which added to my conviction that I understood what patients think and want. But it was not until I had serious health problems myself that I realised what it really means to be a patient. Then, for the first time I understood first hand the feeling of vulnerability and powerlessness that patients feel. Only then did I realise how easy it is for well meaning doctors to sound patronising when they talk to patients and to assume that it’s not worth making sure the patient understands their medical condition or has any say in their treatment.

Robert Johnson is right – the medical profession must start to treat patients as equals who should understand and participate in their health care and patients must find the confidence to respond as equals who have a valuable contribution to make to decisions about their own health and the health of the nation as a whole. Doctors must learn to share information with patients and to take time to make sure they understand the causes, current diagnosis and possible treatments for their particular and personal health issues. And patients must respond by listening, learning and sharing the responsibility for their own health and also for the difficult decisions about priorities, resources and treatment which face the NHS.

Glad I got that off my chest and, if it wasn’t so personal, I said I would write a blog. And so readers, I have.

The Moore Adamson Craig Partnership supports user and public participation, trains lay representatives and develops responsive health, care and education organisations. We are ready to work with and support all those who want to make sense and a success of the new structures of patient and public engagement within the new arrangements for health and social care commissioning and providing. Feel free to contact us to discuss the opportunities.

We hear a lot about the value of the “3 at the top” of the organisation being joined at the hip. While the talent and relentless enthusiasm of the chief executive, medical and nursing directors are crucial to the success of the organisation, just reflect for a moment or two on the impact that patient leaders would have if they were equally joined at the hip.  So what we really need is “4 at the top” of the organisation if it is going to make progress.

You can download Lynn’s comments about why nursing leaders need patient leaders here.   We fully endorse her conclusion that “It is time for nurses to have the confidence to embrace strong partnerships with patient leaders.  This is the way ahead in modern times for the nursing profession to seize the day and strive to champion excellence through  patient experience led care.”  

The Moore Adamson Craig Partnership supports user and public participation,  trains lay representatives and develops responsive  health, care and education organisations.  We are ready to work with and support all those who want to make sense and a success of the new structures of patient and public engagement within the new arrangements for health and social care commissioning and providing.  Feel free to contact us to discuss the opportunities.

Pause for a Eureka Moment in the ThinkTank in Birmingham  – there is no need to wait. That is how it works now. Patients are already running most modern health systems – we just have to recognise that and give them a hand to run it better. That is the claim of Dr Al-Ubaydli CEO of Patients Know Best (PKB) who describes the patient as the only one who has been to all the appointments. As specialists know more and more about their specialisation, they know less and less about the patient. Appointments begin by clinicians and nurses asking the patient what to do next? Locked up in their specialist silos, they need the patients to tell them what has happened the last time they went to (another) doctor. IT enables the patient as the data owner to have the power not just to permit access for others but make it happen themselves.  A recent HSJ supplement provides examples of how decent data management can contribute to effective integrated care and looks at ways in which patients, especially those with long term conditions, can access their records in order to take greater control of their own care.

All that remains is to recognise the reality and provide the IT enabler. My question to Muhammed, the provider of the Eureka  moment, was “what are the non-clinical outcomes of the recognition of the patients’ power? Do they become the advocates and spread the word? Are they feared because with knowledge comes the ability to expose mistakes?” Possibly, but one case history came at once to his mind where the ‘difficult’ teenage patient was transformed by the gift of his records when he turned 18, accessing them on his iPhone.

The Patient Information Forum (PIF) conference was where Mohammed spoke – Birmingham for a moment was Damascus. The other take away tip was that information should seek not just to inform but to change behaviours and this needs to be the focus of evaluation. It is easy now to collect information but it becomes no easier to get people to act on it.

The Moore Adamson Craig Partnership supports user and public participation,  trains lay representatives and develops responsive  health, care and education organisations.  We are ready to work with and support all those who want to make sense and a success of the new structures of patient and public engagement within the new arrangements for health and social care commissioning and providing.  Feel free to contact us to discuss the opportunities.

Spare us from yet more guidelines?

It is this reality on the ground that makes us wary of yet more guidelines on patient participation such as the recently published NHS Patient Experience Framework. Andrew Craig asserted that such guidelines do have a role to play but the danger is that patient engagement is like that that other endlessly discussed topic, NHS governance – the more discussed, the less done. Andrew looks for a sharper focus that includes the element of patient leadership – a call picked up in the work done by our friend and ally David Gilbert who is

leading the charge to up the patient participation game by launching Patient Leaders.  This will be a hub or centre that offers learning and development and a community of practice for a new generation of Leaders

Dig those Data

David argues that patients need to be seen as the solution not the problem. If that happy day is ever to arrive, the patient leaders a will need evidence and data to make their case. How to make sense of data like the report discussed here that discussed the likelihood of getting your legs cut off in different parts of the country and what being diabetic had to do with it. What do these data mean and what to do with them? If government data are gold as has been asserted, how can patients a) get hold of it and b) make best use of it? In answer to a), the Policy Exchange want to build on Tim Berners-Lee’s celebrated call for Raw Data Now and get a right to public data enshrined in all legislation where seeing and accessing the non-private data would be the default for citizens and organisations. Governments could still invoke national security and confidential Ministerial advice as grounds for keeping it to themselves. As for b), some such as Ian Greener in his academic blog oppose this development – we are talking here of dense and difficult data which will lead users to wrong conclusions and wrong choices – or so he and others claim. Is getting it wrong a reason not to be allowed to see it? Equally patronising and disappointing is the other reason offered suggesting that patients’ principal motivation is selfish and to be discounted.

Patient choice isn’t really a driver of improvement, it’s a kind of sop to make us think we are driving up care standards when we are really just trying to look after ourselves

Yes in theory – No in practice

Is the prospect of being condescended to in this way one of the things that put people off being a participant as an active patient or citizen? Caroline Millar went in search of the answers at event to mark the publication of Hands Up and Hands On, a recent report from Consumer Focus and Involve looking at localism and community empowerment.  An impressive 82% of those surveyed agree that “people need to have more say in what is happening in their local area beyond local elections”. But at the same time, 71% say they are not interested in actually getting involved themselves. Caroline lists the top 5 barriers to involvement and the MAC take on how to overcome them.

Once overcome, our new eager recruit to the participative lifestyle will ask how or where they can get stuck in? And here Andrew Craig has prioritised six options in terms of what has – in our opinion –  the greatest potential.  He put getting involved as a Member and Governor in your local Foundation Trust as tops, followed closely by bottom-up patient participation in the patient liaison panels of your local GP practice. You could always try asking for £1.10 for doing so.

Making it routine

Which brings us back more or less to where we started and the question of why people are not just getting on with it? It feels as thought there is nothing more new or original to be said on the topic. The rationale is clear, incentives are available – why does the NHS continue to make such a meal of this sort of activity -  for example, the measurement of customer satisfaction? Why is it not the routine feature in the NHS that it is with service transactions in other parts of our national life? You can’t move these days without being surveyed as I point out in this blog. The issue of getting people to participate in research was one of the topics on the table at a recent Member meeting at my local Foundation Trust hospital ( I had taken Andrew’s advice). I wrote afterwards:

Our answer is ‘get them more involved in research’. Get them used to a consistent, predictable and standardised process about their own experiences – ‘you have recently been seen here. Please tell us how you got on’ – where it is easy to understand why it is being done and easy to do with a short series of questions that are clear and simple to answer and results being fed back through websites, newsletters etc. You have now created a pool of research-ready participants who are pre-disposed to contribute and join in the more esoteric and ‘medical’ exercises. Both sorts of research are essential in a modern health service. Create a contract with the community whereby research participation at whatever level or reason is part of the deal with the hospital -the ‘we treat you, you help us’ relationship in action.

Oh No!

Research: Reciprocal: Routine: Responsive – the 3+1 Rs reformulated. A pretty snappy title? Shame to waste it? Oh dear I feel another set of guidelines coming on.

Locally there is £407,000 worth of extra dosh available to the 46 Wandsworth GP practices this year and the same again next. All they have to do is demonstrate that they have got  some basic building blocks of patient engagement in place and they can collect £1.10 per patient.  Serious money in a time of resource restraint. Astonishing then that only 19 out of the 44 practices we surveyed have bothered to do the necessary for themselves and their patients.  Perhaps the Daily Mail is right about what GPs are earning and this was too little reward to bother with?  Why did the majority of practice not Pass GO and collect their share of the money for the Patient Participation Directed Enhanced Service (PP DES) for Year 1?  Money aside, this is worrying for patient engagement in the practices of the emerging CCG – which is supposed to be a “Pathfinder” after all.

What we looked for in our survey last week

We checked the practices twice last week for the four things GP practices should have done or set up to comply with the PP DES:

1) existence of a patient reference/participation group, which could be a virtual group;

2) existence of a functioning and accessible practice website;

3) posting of patient survey report on the practice website; and

4) ability to access patient survey report through the website.

All the principal four tasks we looked at  should have all been completed by 31st March, according to the DES guidance published by NHS Employers and the BMA’s General Practitioners Committee a year ago.

Short of the mark

In this day and age in the NHS, one surely would reasonably expect every GP practice to have at least a basic, up to date and accessible website.  So why don’t all Wandsworth practices meet this basic standard? Twelve didn’t.

For 18 practices there was no evidence of a patient participation group.  Of course there may be some PPGs in practices which lack a website, but this is something that would require more investigation than was possible in this survey.  At any rate, just having a patient reference group is not sufficient for PP DES compliance.

Only 19 out of 44 practices surveyed had actually posted a completed patient survey on their website.  Surely this should have at least been 26 practices who also had a patient group which was mentioned on their website?  Several sites had evidence that they had completed a survey and even discussed it with patients (all as required by the DES) but then had failed to post it on the website.  This means non-compliance.  Why did this happen in seven practices?

That leaves just 19 of 44 practices which, in our view, are compliant with the Year 1 requirements of this DES and are entitled to their payment.  This is a disappointingly low figure.  Some of the reports we dipped into were excellent and clearly a lot of work had gone into them.

It wasn’t just the mega-practices who performed well – in fact, some of them didn’t comply, certainly when compared to several small and medium sized organisations who met all the requirements and did so clearly and efficiently.  We recommend  that the information in the patient surveys should be collated and disseminated  as “top line messages” by the PPI Team at Wandsworth PCT working with LINk/Local HealthWatch to the Wandsworth CCG and the Health and Wellbeing Board as well as the general public in the borough.

Step forward the deserving 19 and take a bow

Since we believe in rewarding success, we thought it worth listing the compliant practices in Wandsworth.

• Balham Park Surgery
• Battersea Rise Group Practice
• Bedford Hill Family Practice
• Chartfield
• Chatfield
• Danebury Avenue
• Greyswood Practice
• Heathbridge Practice
• Lavender Hill Group Practice
• Mayfield Practice Roehampton
• Mittal “Open Door” Practice, Boundaries Road
• Putneymead Group Practice
• Roehampton Surgery
• Southfields Group Practice
• Streatham Park Surgery
• The Triangle Surgery
• Thurleigh Road Practice
• Waterfall House
• Tudor Lodge Health Centre

Detailed Findings for the 43 Practices  

You can read the full report here.

What happens to the money? 

So what will happen to the £814,000 which local practices could earn from the Patient Participation DES over its two years of life?

Certainly for Year 1 payments, we look to Wandsworth LINk working closely with the Wandsworth Borough Team (what’s left of the PCT) to make sure that practices are not just “tick boxed” through this DES and handed public money they have not earned.  Requirements must not be ignored and deadlines must be honoured.  It must all be transparent and open to scrutiny.

We have always advocated more data being made available to users and this is an opportunity to demonstrate that the data can be used to reward achievement and more than that, avoid a fudged outcome where guess what? everyone passes GO and collects their dosh even if they have done nothing on their way round the board.  By putting our survey results in the public domain, we hope we have helped to prevent any chance of that happening.

Now that this report is in the public domain, we hope lots of people will send it on and start asking questions, and not just locally, about what is happening to the £1.10 per patient multiplied by all the registered patients in England – not a small sum.

The Moore Adamson Craig Partnership supports user and public participation,  trains lay representatives and develops responsive  health, care and education organisations.  We are ready to work with and support all those who want to make sense and a success of the new structures of patient and public engagement within the new arrangements for health and social care commissioning and providing.  Feel free to contact us to discuss the opportunities.

His latest idea is founded on a profound experience and knowledge of health services both as a service user and a public engagement consultant. We wish this venture well and look forward to working with it. He says: ”Patient leaders have a valuable role to play in tackling the problems facing health and social care at a national and local level, but we need to improve the development of and access to learning opportunities in order to grow this pool of talent properly.”

Rise of the Patient Leader

Below is a taster from David’s recent opinion piece in Health Service Journal on “The Rise of the Patient Leader”  in which he describes his vision for different types of patient leaders and a new generation of “unusual suspects” to help tackle the crises in health and social care. The whole piece is a “must read”.   It is clear that Patient Leaders intends to move well beyond patients as merely well-informed service users or even as “experts” in their own condition and treatment.

Amidst the chaos of reform and unprecedented challenges to improving health, the biggest asset we have – people who live with health problems and use services – remains untapped. Instead, patients are a problem to be solved, not the solution.

Patient and Public Engagement (PPE) has been co-opted by institutional interests as a buffer against change, rather than as a co-production engine for it. Despite the rhetoric of ‘nothing about me without me’, organisational approaches to involve people seldom move beyond tokenistic consultations, questionnaires, one-off projects or overly-bureaucratic structures with a seat for a public representative. The engagement industry gathers data through an endless variety of specialist techniques but avoids using that intelligence to inform decisions.

Meanwhile, the NHS cry has gone out for new and innovative leaders to steer us through the storm. Leadership programmes for health professionals abound, yet the only people deemed worthy to lead are clinicians or managers.

……

Even the words are loaded. Take the phrase: lay representative. ‘Lay’ comes from ‘laity’ invoking notions of a priesthood that excludes non-members. Sterile debates about whether patients can represent others serve to distract from a proper definition of the role, which is two-fold:

• Community channel – externally facing, keeping in touch with local communities and bringing in wider perspectives;
• Critical friend – internally facing, flying the patient flag and offering strategic advice from a non-institutional perspective.

Being clear on this ‘outsider-inside’ role can lead to better discussions on the competencies required and what learning and support should be available.

But beyond the thousands of representatives or advisors, there are many others keen to lead change and improve health in the community. These are the health champions, community development practitioners  community researchers, peer-to-peer mentors or even patient entrepreneurs.

So, we have the emergence of two sorts of Patient Leaders:

• Transformers - System-facing leaders wanting to improve the health and social care system (the representatives and ‘advisors’)
• Enablers - Community-facing leaders wanting to improve health and well-being in their  community

But, where is the learning and support for such a blossoming of talent? Professional development is a well-recognised term after decades of investment in staff training. Learning and support for Patient Leaders is almost non-existent.

Patient Leaders – an idea whose time has come 

Gilbert and Doughty have been delivering learning programmes for different types of patient leaders over the last couple of years. These are based on action learning and co-production principles. The CLAHRC in NW London funded four ‘effective patient and community representative’ programmes.  Croydon Voluntary Action and Hammersmith and Fulham PCT followed suit. An online community of practice is being developed alongside a wider variety of learning offers on the Patient Leaders theme. The programmes have been evaluated and show significant impact in terms of people’s own self-esteem and confidence, ability to contribute to dialogue and accountability, and in catalysing individuals own projects in the community.

Patient Leaders is in conversation with several statutory and voluntary organisations about working together to develop the ideas and a wider pool of talent.  National Voices seems particularly keen on advocating for the idea at policy level and in making patient leader programmes available to its members.  Others, such as the National Rheumatoid Arthritis Society have run learning sessions for their regional ‘ambassadors’.

We are sure this is an idea whose time has come.  Patient Leaders can take hold and make a difference. This is something that commissioners and their providers in primary care and Foundation Trusts and patient-led organisations can really get behind as it is in everyone’s interests.

The idea is also receiving international recognition. Ashoka Changemakers is a global online community of action that connects people to share ideas, inspire and mentor each other, and find and support the best ideas in social innovation. Patient Leaders is one of 15 finalists in its Innovations for Health Award. There were 370 entries from 70 countries.

Let’s see some patient leaders in neurology

MAC would particularly like to see some patient leaders in long term neurological conditions.

“For this clinical area, the department left the implementation to local health commissioners but gave them no leadership at all. It set no baselines and failed to monitor progress. The present government needs to understand what went wrong here for the future.”

That’s the damning conclusion of the Public Accounts Committee investigation into Services for People with Neurological Conditions published in March this year. It is a hard but deserved judgement and pretty much what we said to the PAC in our memorandum of evidence.

If ever there was a time the neurological world needed leadership it is now.  Who better to give it than well supported patient leaders with neurological conditions?  We look to neurological 3rd sector bodies to understand  and unleash the power of their members and enable them to lead neurological services to a much better place for themselves as patients and for clinicians who need liberating to do a much better job of providing integrated, quality services.

Leave the blandness behind

We think this case for patient leadership is strong and that Patient Leaders is a terrific idea.  Such a welcome departure from the usual blandness about patient and public engagement which sees it as a “good thing” but never focuses on what it is for and what it can achieve.

Leadership is undoubtedly essential for effective engagement. Clinical, managerial and lay (service users, carers and the public) are leadership’s three legs.   All three are needed for meaningful decision making.  Two-legged stools don’t stand up.

The new clinical commissioners – and their providers – must appreciate that clinical leadership and clever managers are not enough. If they are divorced from PPE-led change, then frustration and contention are the likely outcome. QIPP-type reconfiguration – which usually can’t be done without decommissioning and reinvestment – is not going to get any easier. Or any cheaper.  Lay (patient) leaders are integral to the process of leading local change.

Lay leadership is not a magic bullet – no one argues that it is. But without the lay enablers and lay transformers, as David Gilbert describes them, who are able to operate throughout the system, the challenge of reforming the NHS will be insurmountable.

The Moore Adamson Craig Partnership supports user and public participation,  trains lay representatives and develops responsive  health, care and education organisations.  We are ready to work with and support all those who want to make sense and a success of the new structures of patient and public engagement within the new arrangements for health and social care commissioning and providing.  Feel free to contact us to discuss the opportunities.

Certainly all these transactions had consequences – a customer satisfaction questionnaire followed as a matter of routine.  British Gas used an automated telephone call three days after the visit and the others used e-surveys triggered from emails. The only technical failure that made the questionnaire impossible to complete was, as you perhaps guessed, the one from the web/ internet specialist Plusnet.

Just Routine

This annoying little glitch aside, it is now a commonplace of modern customer service that many (most?) companies have now made the follow-up customer experience mini-survey an integral part of their service measurement and management processes. It was a tough sell and a very time-consuming exercise to despatch and analyse responses when I started trying to persuade companies to do this in the 80′s. Few operations had the means of creating and manipulating databases and even when they did, it was expensive and time-consuming. Technology has swept aside these barriers. But some still find it hard and mistakes – see Plusnet above – are still made. To do it right involves a degree of management focus to get it set up, the commitment of staff,  the allocation of technical resources and the creation of a robust, reproducible and sustainable process which produces information that is used – to pay bonuses, win that customer service award, whatever. There are even professional organisations where customer service professionals and survey providers meet to discuss the merits of competing methodologies like Net Prom0ter and the various alternatives.

Still making a meal of it

Is it the  issues around reproducible and sustainable that  we might find the reason why the NHS still makes such a meal of its customer experience follow-up questionnaires?  There are plenty of them floating around out there in the health services universe – paper ones at appointment desks, electronic survey monkey ones, national surveys about GP services, hand-held survey devices in the wards, people telling their stories on Patient Opinion. But it all seems disconnected, unpredictable and amateur demonstrating a perhaps a management vacuum where it is not someone’s job to measure and manage service. In the NHS, from what we see, it is an extra job for the nurse or clinician, receptionist, practice manager. The process is created from scratch each time and difficult to sustain; the data is not well analysed and the follow-up action and use unpredictable. As Val Moore found in her recent admission to hospital, she – the patient – was left to track down the means of giving their opinion.The person Val tracked down to point this out to after she had been discharged, cheerily admitted that this was something they should be turning their attention to and has never returned a call since. This institution shows the face of the cost-conscious NHS – a direct line that is never answered and with no voicemail. I attended a session at a (rather better organised) Kings College Hospital Community meeting last night which suggested another reason – research for clinicians means in the first instance clinical studies testing treatments and drugs etc. Perhaps customer experience research asking ‘were you seen on time?’ seems almost trivial by comparison.

Service Counts

There is not a hope in hell at this cost-constrained moment for customer experience and service management to be embedded in the NHS and recognised as an essential function.  So we will be left with the situation where measuring customer views will be the province of the amateur with the process of gathering and using patient data left to the random enthusiasms of people who have quite enough to do already.This means that cost-effective and targeted service that is monitored and measured will remain impossible. This matters for lots of reasons – one of which is again prompted by the discussion about how to get users of Kings College Hospital more involved in research. Our answer is ‘get them more involved in research’. Get them used to a consistent, predictable and standardised process about their own experiences – ‘you have recently been seen here. Please tell us how you got on’ – where it is easy to understand why it is being done and easy to do with a short series of questions that are clear and simple to answer and results being fed back through websites, newsletters etc. You have now created a pool of research-ready participants who are pre-disposed to contribute and join in the more esoteric and ‘medical’ exercises. Both sorts of research are essential in a modern health service. Create a contract with the community whereby research participation at whatever level or reason is part of the deal with the hospital -the ‘we treat you, you help us’ relationship in action.

“However, the support for a greater say does not necessarily reflect a personal appetite to do more, with just 28 per cent of people saying they’d like to have an input in influencing local decisions (rising to 38 percent for parents of children under 18) whereas 71% say they are not interested“.

Not interested?  How can this be?  But perhaps it is true.  Perhaps loads of people really are not that interested.  It is certainly my experience as a school governor that whilst some parents will jump on you as you try to sneak out at 9.05am, many more when you talk to them, will be pretty happy with the way things are going and not that bothered about what the governors are getting up to in their name.

Where is everybody?

My daughters’ school is currently carrying out a consultation on whether to federate with another local school.  So there I was a couple of weeks ago sitting on a little plastic chair in a circle in the school hall with my head on one side using my best listening techniques when it struck me as it always does on these occasions that whatever these vocal and articulate people were telling us about what they thought, we really were not getting a full cross-section of the views of the wider parent body.  The total number who had attended our various consultation meetings represented about 5% .    Of course, they are a great bunch – thoughtful, challenging, committed to the school, capable of being a bit stroppy from time to time but that’s all to the good – critical friends, the grit in the oyster, the Usual Suspects.  But they are a very small subset of our parents and we have no idea of how representative of the views of the other 95%.  Where was everybody else?

Frankly, they don’t give a damn

There is nothing unique about this scenario.  The same could be said of pretty much every public consultation or user meeting that I have ever been to.  Often at meetings like this people will tell you that there is great discontent out there somewhere.  They are here to speak for the unhappy silent majority.   But when you ask why these people don’t come and talk to you, either at the meetings or anywhere else, they tell you it is because they don’t see the point – and they don’t think it will make any difference.  So which is it?  Is it just that they are happy with the decisions that are being made on their behalf and frankly have loads of other things they’d rather be doing with their time or are they sitting in their kitchens nursing their wrath to keep it warm but too disillusioned to email, or talk to us, or come to a meeting or fill in the consultation response form?  We would really like to know, but how do we find out?

Perhaps we need to accept that there will always be a pretty substantial group of people who really are not that interested in getting involved.  And what is wrong with that?  We are all entitled to say there are things we don’t give a damn about and let the state get on with its job.

How to catch the low hanging fruit

Nevertheless there is still the group that sits between the 5%-10% we hear from so regularly in and the reported 28% to 36% who do want to be involved but are not.

The report helps to highlight what is putting them off.  So here’s our take on how to get to grips with their top five “barriers” to involvement.

• Lack of information – engagement mechanisms appear to be invisible.  I’d say we need to find out what really works  - and what doesn’t – and decide how we measure success or otherwise.  Posters and PowerPoint presentations in draughty halls may tick the boxes but won’t really do much communicating.  Word of mouth and personal social contact must be a big part of the answer and we need to find ways of measuring our efforts and our successes in this area.
• Lack of time (and fear of being sucked into the time and good-will eating machine that is the world of volunteering and involvement – my words not theirs).  We need to be really clear about what we are asking of people; make good use of their time by sticking to timetables, running meetings properly, conducting and enabling conversations so everyone gets a say, ending things on time and not asking favours of people who are already doing too much.
• Lack of faith in local authorities – (which could presumably be extended to any local provider).  Trust is the holy grail. But it takes a long time to develop it, especially if you are starting from a low point as many are, and it can be destroyed in seconds.   The development and nurturing of trust should lie at the heart of every single contact.  Don’t insult people’s intelligence, and don’t patronise them and don’t ask for their views if you have already made up your mind.
• Fear of the usual suspects.  Are the people who come to meetings thinking they are standing up for the down-trodden, “silent” people actually the very ones who are putting them off in the first place?  Should we politely ask them to leave?  Probably not, though it is sometimes tempting, but we might have to ask them to be quiet and listen for a minute.  We need these people working for us: they are key networkers and influencers in communities, whether we like it or not, so how do we make the most of what they have to offer?  And we also need to create some “safe” spaces in which we can talk to the people who are less happy about standing up in meetings or manning the barricades.
• Lack of return on investment – working hard for a desired result and not getting it puts people off .  To some extent this may be inevitable.  People engage when it matters to them.  When the battle is over they are likely to move on, especially if they have not got what they wanted.  But is it possible to get people to appreciate the process itself and see it is fair and worth being part of even if they don’t get exactly what they expected out of it?

There’s nothing covert or sinister about entryism. It just means not hanging around for someone to ask if you want to exercise your rights and opportunities to be engaged with what the NHS is doing.    We’ve created a practical “6 Point Action Plan” of what “engagement entryism” means in terms of opportunities for local patient representatives and active citizens to get inside the local organisations that matter in health and social care and make their voices heard.

A flawed system can still be exploited 

Yes, we know that it is a system that has not delivered for consumers and that the Bill’s changes are going to make that worse (vide changes to Local Health Watch’s status).  The alternative is to just say “woe is us”, smear on the ashes and rend a few garments.  Or, hold your nose and get stuck in anyway.  There’s nothing to lose.

Here’s a menu of “entryism” choices.  We’ve prioritised it in terms of what has – in our opinion –  the greatest potential.     Foundation Trusts come out tops, followed closely by bottom-up patient participation in GP practices.

1. Join your local Foundation Trust.  Once you are a Member, get yourself elected as a FT Governor.  The Governors role is to hold the Board to account in public and you can attend Board meetings and ask questions.  Each FT is required to have a patient and public involvement strategy.  Find out what your FT is doing and see what opportunities it offers. In the post-Bill NHS, Foundation Trusts are going to have more power and Members and Governors should have a greater share of it.

2. Join your practice’s patient participation group (PPG).  If you practice doesn’t have one, make a written suggestion to the senior partner that it creates one.  Look to the National Association for Patient Participation  (NAPP) for how to do this.  The local Clinical Commissioning Group (CCG) will probably be setting up an “overarching PPG” drawn from all of its constituent practices.    It will have an input into strategy.  Become your local PPG’s representative on this larger CCG-wide group.

3. Put yourself forward to be one of the lay members on the CCG board. They have to have at least two lay members – one of which has oversight of patient and public involvement.

4.  Go to the meetings held in public by the CCG “board” (it may have another name, but it is the main decision making body for the CCG).  Submit written questions in advance that have to be answered formally and included in the minutes.

5. Exploit your local authority’s scrutiny duty over health and social care by demanding the Overview and Scrutiny Committee (OSC) investigate any shortcomings and shady dealings in what the CCG is doing.

6. Each Council will be creating a Local Health Watch (LHW) by April 2013.  Find out what is happening in your area and how you can become involved in it.  The existing Local Involvement Network (LINk) will know what is happening and may be a “pathfinder” for LHW.   Healthwatch locally will have influence with the Council’s Health and Wellbeing Board and can enter and view premises where health and social is being delivered and make reports and complaints if standards are not acceptable.

Battle at the grass roots

This list shows that there is real patient and public influence to be had at local grass roots level.  That is where implementation of the NHS Bill will have the biggest impact on patients, carers, the public and local communities.  There are lots of local allies, clinical and lay people who can come together to take advantage of the engagement and influencing opportunities.   Remember the power of social media and networking as a way to contact people and spread the word.

The way to get into “Fortress NHS” is not to charge the main gates. Tunnelling under and around them and coming up inside is a better strategy. Twitter   and Facebook may work better than a battering ram.

The Moore Adamson Craig Partnership supports user and public participation,  trains lay representatives and develops responsive  health, care and education organisations.  We are ready to work with and support all those who want to make sense and a success of the new structures of patient and public engagement within the new arrangements for health and social care commissioning and providing.  Feel free to contact us to discuss the opportunities.

Golden Data

This was my latest excursion into the world of using data that was once not collected or was only visible to the priesthood and now is out there for us to use for our own benefit. Perhaps Zoopla should add this information for house hunters to its lists of what is up for sale and rent. Now there is another push for open data from the Policy Exchange picking up a point made by an European Commission report in December last year that government data is/are gold. If governments give these data away, the benefits are far greater than the money earned by selling stuff like postcodes. We need to sweat the asset of government data  and put those data sets to use. After all accessing them costs little or nothing.

The Policy Exchange want to build on Tim Berners-Lee’s celebrated call for Raw Data Now and get a right to public data enshrined in all legislation where seeing and accessing the non-private data would be the default for citizens and organisations. Governments could still invoke national security and confidential Ministerial advice as grounds for keeping it to themselves.

Help for Consumer Representatives

This would certainly help people like user representatives who struggle to get hold of the information they need to do a good job – I remember working with Water Voice members who had to rely on a rather unreliable mix of statutory information from the regulator, briefings from the industry and the water companies themselves, personal connections and their own skills acquired elsewhere to get a sense of where and how they might make a difference. If they could appeal to a statutory right, it would shorten the time and uncertainty involved in making Freedom of Information requests. The Policy Exchange report suggests a score card for organisational performance which has a heading which takes us on from Customer Satisfaction to their suggested Community Satisfaction score.

Getting it wrong not argument for withholding info

Some like Ian Greener in his academic blog oppose this development – we are talking here of dense and difficult data which will lead users to wrong conclusions and wrong choices – or so he and others claim. I have always taken the view that getting it wrong is not an argument for withholding information. Consumers are always making bad choices even after the most extended internet searches. But practice makes if not perfect then at least better, assuming always that the wrong healthcare choice leaves us an opportunity to try again. But the giveaway which reveals what so often lies behind these arguments is expressed by Greener as follows:

Patient choice isn’t really a driver of improvement, it’s a kind of sop to make us think we are driving up care standards when we are really just trying to look after ourselves

And trying to look after ourselves is so wrong? This is condescending in the extreme – this academic is not a fan of Adam Smith:

By pursuing his own interest he frequently promotes that of the society more effectually than when he really intends to promote it. I have never known much good done by those who affected to trade for the public good.

Scraping not scrabbling for data

Undeterred then we come back to the data. There is certainly a lot to go on – the estimate is that there are some 7,900 distinct datasets in the UK Gov’s central data portal. The tough task is to be able to mine and make sense of the content – scrabbling around for the thread that will take you through the information maze. There is a very useful table in the report listing some of the organisations who are already using public data to create products and services. I liked the look of Scraperwiki where good people will either get information for you or teach you how to get it yourself by ‘scraping’ it off websites – it does not hurt at all and amputation is not on the agenda.

And just like the buses all coming along together – of course now we know that in advance in London since you can text TfL and ask for the times of the next few buses – I got an email from James Munro of Patient Opinion who tells me his team can now send me scheduled reports tailormade for me on the customer stories they collect. My suggestion to James is that he can link up at once with someone like Scraperwiki and link his stories to some other clinical data and add a whole new dimension to the information he supplies. We have already blogged on the findings that patient and carer-anecdotal evidence is often backed up by the clinical evidence. If Patient Information can join those datasets together, we will all see the benefit and make better sense of why we will get our bits cut off here but not there.