Perfect Palindrome

Remember the Election? There certainly seems to have been a strong political flavour for 2010. Our first post of the year was about the NHS Constitution. Our best wishes for 2011 will still have a strong taste of the political but with the emphasis changing from aspiration and announcement to delivery and implementation. Looking back at last year it has been a reminder for those of us who advocate patient representation of the bracing realities of politics and who gets listened to at a time of regime change. The patient voice and the citizen interest is invoked in aid at every turn- ‘nothing about me without me’ . Like the perfect palindrome the phrase can be read backwards, sideways and upside down, sounding impressively committed. But repetition drains it of meaning and reduces the phrase t0 an echo bouncing around in the canyons of government  and like the songs of whales reverberating across the oceans of political promises. After a while the sound has drowned out the meaning.

It certainly does not come over as a strong foundation for continuity building on the best of what was already in place. The patient interest is a fragile plant. Amazing really how it has survived the attentions of so many new gardeners keen to uproot and move the buds of citizen participation  into a new set of political flowerbeds. It is a miracle that the roots of the grass survive as those in charge bounce from one over-watered over fertilised extreme to drought and neglect  end of the cycle of cultivation.

In the rush to implement manifesto promises, to pause and consult is unthinkable. If there was ever consultation, that took place in the focus groups or the brainstorming sessions of the caucus that designed the political promises and platforms that fuelled the electoral rhetoric. Immediately after an election is no time to stop and think “is this really the right way to do this?” But in spite of its fragility and the neglect at the hands of those who ‘know’ what we all want, this plant of participation and engagement survives – participa robusta indeed.

The vocabulary of engagement is easily invoked – it is easy to write about this sort of stuff. We can do it, lots of other people can do it; there would appear to be people in the Department of Health who do little else. But what happens? Nothing very quickly that is for sure. Change is hard enough when everyone is operating within a managerial environment where full-time people are being paid to organise and implement change. There is some faint expectation that they will do what they are told and even a chance that if they do not succeed, they will be replaced and successors appointed to carry the policy on. In the world we live in of volunteers, of people giving up their evenings, people making astonishing choices to go to meetings on a hospital’s policy for discharging patients instead of a pleasant evening at home in the warm , there are few if any levers you can rely on, a definite shortage of buttons you can push and see the winnings spill out of the ‘implemented’ slot. Material written for this world has to be less certain in tone, more restrained in its promises, more cautious in its goals and ready to recognise the smallest success.

Coalitions that produce results in this environment take time to cultivate and there are no instant harvests. The shock of transplant means that a new local Healthwatch will take the two years that many LINks took to get going; a new set of commissioning arrangements run by people with the skills and confidence to share their decision making with patient and user groups will take the time that the PCTs took to build their engagement programmes. GP consortia will need more time to stop considering the user interest as a rather shapeless mass of anecdote and impressions drawn from the GPs’ imperfect recollections of individual patient encounters. They will have to work at creating patient-first management programmes based on organised, sustainable patient-centred methods of collection and analysis.

Where would we start? Looking back at our blogging year as we ranged over the visionary – Scotland’s real free school Kilquhanity and marketing questions about the meaning of Harpic – to sober and down-to-earth analyses of what Commissioning might look like, what Accountability might mean and how Local Democratic Legitimacy might work, the important clues for this Partner at least are in what we wrote in such articles as E-App Ahoy! showcasing a web-based tool for commissioners of neurological services, others about with GP practice patient groups and finally an article on the meaning of complaint numbers? Is Up bad?

E-App Ahoy! because the work of third sector organisations is essential to the realisation of a patient oriented health service. At the same time their investments are at risk if change destabilises their programmes based on particular clinical and operational contexts that can be changed at the scratch of a Health Minister’s pen. The voice of the patient picked up and amplified by these organisations and by patient groups at GP level start giving real meaning to grand words like Accountability by seizing opportunities for co-determination as offered by expert patient programmes and personal budgets brought together with new approaches to management like Total Place. Efforts to be close to users and be open to their views may well result in higher complaint numbers – this is not a disaster. Complaint volumes pump energy into processes of consultation and representation and must be seen as positive indicators of organisational well-being and not as a sign of their decay.

What are your touchstone issues? What are your bellwether indicators for the health and success of particular programmes? How can the patient interest rescue health and social care reform from going off the road? Can parents seize control of schools from Casey Jones Gove at the controls of his run away train? The next rhyme is ‘high on cocaine’ in the Grateful Dead’s version but we do not think it has come to that yet. How can the risks and frustrations of joining in and responding to invitations to play your part loom less large than the opportunities to change things for the much better?

You tell us in 2011 and we will keep writing and we hope doing to help build yet another house of representatives whose voices will be heard and acted upon.

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