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News and Updates for todays Patient Leadership Summit

Chair, Jonathon Hope MBE, Patient Leader
Whilst at school Jonathon was diagnosed with kidney failure. Since then he has experienced 15 years of dialysis, around 3 years in hospital and 3 unsuccessful transplants. In 2005 he received a fourth transplant which is working well.
Over the last 14 years, he has chaired or co-chaired a wide range of local and national healthcare modernisation projects, including those on Kidney Care, Palliative Care, Shared Decision Making and Self-Care.
Until recently, Jonathon co-chairing ‘Transforming Participation in Chronic Kidney Disease (TP-CKD) programme’ with Richard Fluck, funded by the NHS. The TP-CKD programme was using PAM, CS-PAM and a range of other PROM and PREM measures to develop a person-centred approach to kidney care: https://www.thinkkidneys.nhs.uk/ckd/
Jonathon has spoken at over 50 conferences on a wide range of subjects, including service improvement, the patient and carer role in service improvement, the importance of co-design and co-production and the emerging role of patient leaders in transforming the NHS. Jonathon has also chaired a number of conferences, most recently on Patient Leadership and Co-Production.
In 2012 Jonathon was awarded an MBE for Services to Kidney Patients; was named among the inaugural HSJ Top 50 Patient Leaders survey in 2015; and chaired the first national Patient Leadership Conference mid-2017. Jonathon has a 20 year background in financial services.


Patient Leadership: NHS England Update
David McNally
Head of Experience of Care, Nursing Directorate, NHS England
David has been national Head of Patient Experience with NHS England since 2013 where he leads on promoting coproduction and patient leadership, developing support for carers, Always Events and using evidence. He has spoken and published on coproduction and patient leadership alongside patients/service users. David is an Honorary Senior Lecturer at the University of Manchester, Medical School and is an Expert Reviewer for the Health Services and Delivery Research Programme, National Institute for Health Research. He has worked previously at Regional and Local level in the Health Service, in Adult Social Care and in the charitable sector.
David talks about Co-production this morning:
What do we mean by Co-production?

  • Building mutual and reciprocal relationships in which all parties are recognised as having expertise
  • Founded on genuine partnerships ‘from the very first conversation where we establish what question we are exploring together’
  • Different from previous patient & public involvement


Full PowerPoint Presentation


The Potential of Patient Leaders
Tessa Richards, 
Senior Editor, Patient Partnership, The British Medical Journal
Pre-Event Abstract
Access to information has empowered  patients, carers and the public and they are driving change  in all spheres of healthcare from medical education, and research, to clinical practice and policy. This short presentation will provide examples and suggest the NHS should be more proactive in reaching out to the patient community.

Recruiting and supporting Patient Leaders to co-design and improve services
Paul Devlin, 
Director, Because It Matters (a consultancy focusing on best practice in health and social care)
Pre event abstract
Recruiting and supporting Patient Leaders to co-design and improve services
Co-production and Patient Leaders should matter – as demonstrably better services can result from involving those who use them in their design. But getting co-production right, and involving and sustaining Patient Leaders, can be challenging for organisations.
There are some questions you can ask yourself about making sure your co-production is “for real”
What am I trying to get involvement in? If it is about generating ideas, or design or re-design of a service, that’s good. If it is about seeking agreement to a preferred option, that is not co-production.
When am I trying to get that involvement? If it at the start of a programme, or at least early enough to have influence, that is good. 
Can anything change as a result of this patient involvement? If the answer is “No, not really”, then it probably isn’t co-production.
Full PowerPoint Presentation


Also of Interest

Root Cause Analysis: 2 Day Intensive Training Course
Monday 12 November 2018 — Tuesday 13 November, London

Reporting, Investigation & Learning from Near Miss Incidents
Friday 30 November 2018, London

A Practical Guide to Serious Incident Investigation & Learning
Monday 3 December 2018, London

Root Cause Analysis: 2 Day Intensive Training Course
Tuesday 4 December 2018 — Wednesday 5 December, London

A Practical Guide to developing, using, authorising and reviewing Patient Group Directions
Monday 10 December 2018, London


15 October 2018

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