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News and Updates from today's Patient Leadership Summit

The conference begins with an update from Fiona Carey C4CC Co-Chair Coalition for Collaborative Care who discussed 'Patient Leadership & Co-Production' and will cover:

  • what is patient leadership?
  • why the NHS needs more patient leaders
  • why is patient leadership key to the future of the NHS?
  • how are patient leaders helping shape the future of services


She introduced her session by liking Patient Leadership to a unicorn- very popular and talked about but hard to find.

She talked about C4CC and their vision to create a better deal for people with long term conditions. She talked about patient centred care being everyone's business and how having a patient in the room changes the conversation. "We need to create an enviroment where the patient is in the room and at the table"

Full powerpoint presentation

Fiona's Biography

Fiona is Co-Chair of the national body Coalition for Collaborative Care, an organisation of health care professional, patients and carers that is looking for a better deal for people with long-term conditions.

She is also Co-Chair of the East of England Citizen Senate, a ‘network of well-networked patients and carers’ which she helped to design and found in the run-up to the NHS changes in April 2013.

She became ‘accidentally active’ on a local and regional basis after joining Addenbrooke’s Cancer PPG. Nationally, she has been a member of the Wheelchair Leadership Alliance; is a founding member of the Q Initiative; and has been an Expert Adviser to the DoH on the establishment of the Healthcare Safety Investigation Branch.

A kidney cancer patient since 2001, she’s had a nephrectomy, a pulmonary metastatectomy and, after a Whipple’s surgery for pancreatic metastases ten years later in 2011, she finally retired in 2012, with iatrogenic Diabetes, pancreatic insufficiency and seriously reduced mobility. Two further diagnoses in 2016 has seen Fiona treated for a recurrence in her remaining kidney, and further secondaries in her remaining pancreas. This has all been a bit rubbish, but ask her about wheelchair basketball, and watch her grin.

Fiona worked for thirty years in publishing and higher education, mostly at the Open University.

She is regularly invited to speak about patient-centred care and co-production at conferences and expos, has helped to design and develop NHS Citizen, and chaired the Wheelchair Services Summit with David Nicholson.

David McNally Head of Experience of Care NHS England continued the morning with a presentation on 'Joining up Co-Production and Patient Leadership' and covered: 

  • ensuring that the voices of people with lived experience are included in decision-making, from commissioning to co-design and co-delivery
  • National developments and local support
  • moving forward


David stated how its  about clinicians asking "What matters to you?" as well as "Whats the matter?". He talked about work he did on Improving experience of care through people who use services and how the process of Coproduction can stimulate hospitals thinking about how to realise quality improvements. By hearing and seeing patients experiences it creates a sense of urgency among staff to act on improvement issues and legitimise improvements to higher management.

His message for the NHS is just do it. Invest incoproduction - in commitment, people, capacity and resources. Make it the way you do business - its not an add on.

Full powerpoint presentation

David's Biography:

David has been national Head of Experience of Care with NHS England since 2013 where he leads on promoting coproduction, including the use of Always Events, to improve the quality of experience, developing support for carers, and developing evidence. He is an Honorary Senior Lecturer at the University of Manchester, Medical School and has worked previously at Regional and Local level in the Health Service, in Adult Social Care and in the charitable sector.

Jane Mcgrath CEO West London Collaborative with community Leader/s concluded the morning presentations with an insightful discussion on 'The potential role of local communities in facilitating co-production healthcare services'

  • ensuring local people are integral to all decisions
  • our experience of co-production


Pre conference abstract:

This presentation describes why there is a vital need for local people to be part of local  decision making in health and social care and the contextual drivers for this. I present our response - WestLondon Collaborative  which was driven by the community. We examine two examples of coproduced transformation work -using different tools and methodologies and pose some difficult questions that have arisen from 3 years  doing coproduction in the field. Followed by Q&A.

Jane talked about the challenges of co-production and working closer with communities. She spoke about the CIC - driven by the local communitey and not the NHS or CCG. The values include being curious, brave, transparent, to push boundaries and invest back into growing resilient active communities. Their motto is to ask "Who isn't in the room?"


Full powerpoint presentation

Jane's Biography

Before becoming unwell, Jane was an account director at a leading public relations company and a lecturer in contemporary communications at University of The Arts London. As a result of her experience she is now active in campaigning for improvement in mental health services. She has worked closely with West London Mental Health Trust as a service-user consultant since 2008, developing innovative co-production projects that put experts by experience in equal partnership with professionals. In 2015 she became chief executive of West London Collaborative, a community interest company that delivers authentic partnerships to help NHS organisations and commissioners solve complex problems using co-production and other innovative tools.

Future conferences of interest:

Patient Experience Insight Summit
Thursday 22 February 2018 
The Studio Conference Centre

Reducing Medication Errors National Summit 2018
Wednesday 18 April 2018 
De Vere West One Conference Centre


15 December 2017


    Partner Organisations

    The Tavistock and Portman NHS Foundation TrustInPracticeClinical Audit Support CentrePlayoutJust For Nurses
    GGI (Good Governance Institute) accredited conferences CPD Member ASGBI (Association of Surgeons of Great Britain and Ireland) professional partner BADS (British Association of Day Surgery) accredited conferences