The old PPI is dead; long live the new PPI. It is time we started talking about PPI in new terms because we have a new NHS structure in England. Involvement and engagement in the PPI and PPE of old were not ends in themselves, but only means to an end. And that end was and remains: changes through shared power and service improvement which puts the patient, carer and family member experience uppermost along with safety and good clinical outcomes. You can’t achieve quality, innovation, productivity and prevention (QIPP) without achieving all three and you can’t achieve QIPP without patients as partners.
So step forward Patient Powered Improvement – the new name for PPI. As a bellwether, even the editors of BMJ have twigged to the importance of “patient powered health”. Perhaps its clinical readers will take note, as they should also of the launch by Centre for Patient Leadership (CPL) of an impressive and inspiring tool kit to help everyone get on board with patient leadership. Its name could not be more apt: Bring it on – 40 ways to support Patient Leadership. We believe that patient leadership provides a great example of Patient Powered Improvement.
Bring It On – the new CPL guide and toolkit
Bring it On explains what patient leadership means and the role and purpose of Patient Leaders. It aims to help NHS organisations foster patient leadership and Patient Leaders. It was developed as part of the NHS Midlands and East SHA’s work on improving patient and customer experience. The guide provides descriptions of key concepts and ideas and things that can be done to foster patient leadership. It includes examples, case studies, tools (such as self-assessment frameworks, checklists), top tips, useful background materials and places to go for more help.
The wide availability of Bring it On means there is now no reason why every part of the NHS cannot seriously consider enabling the development of local patient leadership as a valuable new asset to support co-created change which benefits everyone and makes better use of tight resources. Its easy: just do what it says on the side of the new tin.
It is important to be clear about who “patient leaders” are. For CPL, who originated the PL programme, patient leaders are those patients, service users and carers who work with others to influence change. They are everywhere: not just as representatives in institutionally-led engagement structures, but health champions, community researchers, patient entrepreneurs, activists and campaigners, peer to peer supporters and many more.
We agree. The big challenge to the new NHS organisations in England is not to pigeonhole this, but to have the boldness to foster patient leadership and then to work with patient leaders. That’s the kind of culture change that Robert Francis said had to happen. And that’s the only way we can see to change the prevailing “look up not out” managerially based behaviour. As they say in North America, “it’s time to get with the programme”. And time is not on anyone’s side.
Patient Leaders Plenary needed
NHS England could help a lot with this. It is is designing a “Civil Society Assembly”. We think this initiative would be much more practical and useful if it was reshaped as an annual “Patient Leaders Plenary” – a virtual gathering where patient leaders from around England could meet to exchange learning around their own development, decide what they want to do and be supported to do it. This may include what service changes have worked and how they influenced change. A plenary with this rich mix would give the initiative purpose and focus and create a huge asset which commissioners and providers could use.
Crowdsourcing this plenary from Patient Leaders themselves would mean the evidence base would grow quickly and have maximum clout and exposure to encourage wide adoption. NHSEngland’s new three year business plan Putting Patients First makes one of its offers “listening to patients and increasing their participation”. That’s good but it has to mean a lot more than the Friends and Family test. Having Patient Leaders in the right places – which means having them everywhere – could help to push things much further.
Patient Powered Improvement has to be the biggest part of what success looks like in the new arrangements. We think the main driver for the “new PPI” has to be patient leadership. Why? Because it’s the logical thing to do in an asset based approach to change and doing better with less. We all know – from frustrating experience – that the traditional PPI involvement and engagement approaches have limitations. Of course, Patient Leadership and “PPI” are not synonyms, but the latter isn’t going to succeed without the former. We the Patients should “put” ourselves everywhere, not be “put” places by others.
The Millar Adamson Craig Partnership supports user and public participation, trains lay representatives and develops responsive health, care and education organisations. Feel free to contact us to discuss the opportunities. Follow MAC on Twitter @publicinvolve