We listed the names of 19 GP practices in a recent blog. – not the most riveting of reads but we believe in the dictum of noticing when people do it right. It is all too easy with the NHS and patient engagement to find fault – actually forget ‘find’ since that implies you have to go looking for it. So for a change rather than just moan about the 25 who did not do it right or at all, we feature the 19 GP practices that carried out the four things they should have done or set up to comply with the PP DES (Patient Participation Directed Enhanced Service). What about the others – did they not think earning an extra £1.10 per head for doing this work was worth getting out of bed for?
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.
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.