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News and Updates from today's Patient Leadership Summit

This national summit focuses on the important issue of Patient Leadership and how you can support patients in your organization to co-design and improve services, how you can help patients to develop patient leadership skills and how to effectively work with patient leaders.

The conference begins with an update from Mark Doughty Senior Leadership & OD Consultant The King’s Fund Director Centre for Patient Leadership who will discuss'What is Patient Leadership?' and will cover:

  • 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?


Mark stated that "This is the first event of its kind on Patient Leadership which is a marker that the landscape is changing".  Marks opened the conference by asking delegates to discuss what Patient Leadership means to you?  To Mark Patient Leadership brings diversity, difference and experience that patients are at the heart of everything we do. We bring the ability to see things differently, to offer different viewpoints which hopefully enriches, sometimes challenges and sometimes opens up vision, breaking the blind spots we are caught in. 

Mark said that Patient Leaders are true patients who want to support organisations to make a change. This isnt leadership as in traditional leader follower, this is leaders as in helping others to make sense of things - supporting the quality of conversations that encourage dialogue and understanding. Patient leaders support people to take action in a collaborative partnership well. 

Mark concluded by saying that he feels for those working in the system due to the tension between financial grip, tickbox and system, and at the same time holding a huge shift into collaboration, partnership co production and working together which involves different qualities. Patient leaders can support you in this. In managing our lives we have had to manage similar tensions. Patient leaders can be used to facilitate joint understanding. 

Full powerpoint presentation

Pre conference abstract: Patient Leadership – The power of the patient as leader

This key note will explore what we mean when we talk about Patient Leadership and patient leaders. We will explore who are the patient leaders, (providing specific examples), what are the roles they currently play in the system and how they might influence the strategic and operational design and delivery of the health and care system going forward.

The development of patient leaders and their role in strategic and operational change will be placed in the context of pre and post The NHS Five Year Forward View (5YFV)

The 5YFV offered a vision for the potential of a ‘new relationship’ between all of those involved in the health and care system including those involved in designing, delivering and receiving services. What is the role in patient leaders in building and facilitating this new relationship band in supporting new models of engagement and involvement.

Finally barriers to the progress of the development of patient leadership will be identified and suggestions on how these might be countered will be offered.   

Mark Doughty's Biography:

Mark’s current interest is working with leaders from across the health and care system. This includes health and care professionals and patient, citizen and community leaders. He is currently supporting leaders to develop the “new relationships” mentioned in the NHS Five Year Forward View which he believes are key to creating a health and care system fit for the 21st century    

Mark undertakes this work in his role as a Senior Consultant in Leadership and Organisational Development at The King’s Fund. Here he supports The King’s Fund to embed a collaborative and partnership approach to working with patients and the public across all areas of its work. He has a particular interest in the development of patient and community based leaders and is involved in designing and facilitating a number of patient and community leader programmes both at The King’s Fund and for health and care organisations

Mark is also Director of the Centre for Patient Leadership and a Faculty member of the NHS Leadership Academy. He also coaches young people living with an illness, injury or disability to achieve leadership roles within their organisations.

Olivia Butterworth Head of Public Participation Jack Welch Patient Leader and Gulwali Passarlay Patient Leader NHS England will continue the morning with a joint presentation on 'Developing patients as leaders and partners'.

Olivia updated delegates on NHS England developments and the NHS Five Year Forward View. Olivia quoted from the 5YFW "We need to ensure that patients and the public are integral part of our governance, decision managing forums, service improvement, redesign and assurance". 

Olivia discussed the statutory guidance on PPI published by NHS England in April 2017. Available here

Olivia also discussed the Involvement Hub here 

Olivia then discussed Patient Leadership with Patient Leaders Jack Welch and Gulwali Passarlay who are both alumni member of the NHS England Youth Forum. 

Full powerpoint presentation

Olivia Butterworth's Biography

Olivia leads NHS England’s work to ensure that the NHS works with citizens and communities to have a voice that influences the development, design and delivery of our health and care services. Her key responsibilities include the development of approaches to ensure citizen and community involvement through programmes such as; NHS Citizen, a citizen and community led approach which will see a revolution in public participation and transparency; supporting STPs; digital and online engagement; all underpinned by the statutory guidance published in April 2017 – supporting participation in health and care. She was named in the HSJs Top 50 Innovators and the Top 50 Integrators in 2014.

Olivia was previously the strategic lead within the Department of Health on partnerships with the voluntary and community sector and more widely the ‘Big Society’ vision. She led the 2007 strategic review of DH voluntary sector funding and investment which resulted in the creation of the Voluntary Sector Strategic Partner Programme, the Innovation, Excellence and Strategic Development (IESD) Fund and the Health and Social Care Volunteering Fund.

Olivia has a background in Community Development and education with a passion for empowering people to be their own change. She has worked with a wide and diverse range of voluntary sector organisations, both in paid and voluntary roles, providing support with organisational development, developing services, engagement, involvement and fundraising.

Olivia is very proud to be a Trustee of Manchester based LGBT Foundation

You can follow Olivia on Twitter @LiviBF 

Jack Welch's Biography

I may be based in Dorset, but have been told by many people that more often than not I travel to other locations rather than being fixed in one place. As a graduate from the University of Winchester in English and Creative Writing in 2014, I have been significantly active in the field of health and public engagement for over three years.

For much of that time, I have been an advisor to my local NHS CCG in Dorset to assist with their Clinical Services Review, or their wider proposals for change to adapt to the current financial climate they are in. This has involved working with people of all ages across the county to scrutinise any aspect which might relate to public engagement.

Since that time, I have given various public talks about mental health and wellbeing, become a Healthwatch Champion and now sit as a new advisor for the newly established Learning Disability and Advisory Group for NHS England. I am most interested in issues that relate to autism and disability and looking at how better outcomes can be achieved.

Follow me on Twitter @MrJW18. 

Gulwali Passarlay's Biography

Gulwali Passarlay is an Afghan political refugee currently residing in the UK. He left Afghanistan in 2006 and recently graduated with a degree in Politics from the University of Manchester. 

A Global Youth Ambassador for global children's charity Theirworld, Gulwali has taken a long history of campaigning and leadership roles, including being the President of the United Afghan Peace Movement, Chairperson of the Afghan Youth Movement, Patron of the Separated Child Foundation, Commissioner of The Children's Society, and Ambassador of various organisations, including being the Olympics Torch-bearer, and NHS Youth Forum. An award-winning activist, Gulwali has garnered the Distinguished Achievement Award (Student of the Year), Collaborative Leadership Award, and among others, the Manchester Leadership Gold Award, in recognition of his leadership and positive contribution. 

He has told his story of life as a refugee in his autobiography: "The Lightless Sky: A Twelve-Year-Old Refugee's Harrowing Escape from Afghanistan and His Extraordinary Journey Across Half The World", on TV channels such as BBC, Al Jazeera, CNN, Channel 4 News, itv, Russia Today, in print media such as The Guardian, Time Magazine, The Independent, The Scotsman, and at events such as TEDx.

As a fervent advocate for many social justice issues and causes, Gulwali was nominated for the 2016 Nansen Refugee Award by the UNHCR. Today, he continues advocate for education, social justice, and to make a positive impact in the community, locally and abroad. More information can be found at: 

You can follow Gulwali on Twitter - @GulwaliP 

Carol Munt Patient Leader, Honorary Lecturer & Doubleday Affiliate Manchester Medical School NIHR-NHSE Patient Experience Team HERG US-PEx Lay Panel HQIP Service User Network concludes the morning with an update on 'How can organisations develop and embed patient leadership into service improvement?' and will cover:

  • patient leadership development 
  • embedding patient leadership into service improvement 
  • involving patients to improve patient safety and experience 
  • my experience as a patient leader 

Full powerpoint presentation

Carol Munt's Biography:

In 1982 Carol was a passenger involved in a road traffic accident in France, resulting in a fractured skull, brain haemorrhage and coma. On return to the UK she was diagnosed with Narcolepsy & Cataplexy as a result of the trauma. Medication now keeps her condition fairly stable.

Passionate about Patient & Public Involvement (including carers), Carol remains one of HSJ’s Top 50 Patient Leaders.

She is a confident and well received public speaker recently addressing audiences at the King's Fund on 'Co-production',  ADASS/NHS joint conference 'Caring Together'  HC-UK ‘Patient Experience Insight’ and IHI/BMJ Forum ‘Co-production’

Feedback includes ‘different view, passionate – tells it like it is’, ‘loved common sense approach’, ‘very practical and great ideas for how to get it (co-design) started’, ‘ informative amazing, kept interesting’.

She is due to speak at several more conferences this year and will be taking part in a main stage panel session on co-production at Expo in September

She is an Honorary Lecturer & Doubleday Affiliate, Manchester Medical School., an active member of  HQIP Service User Network (SUN), NHS-C4CC Co-production Model Group, and HERG US-PEx Lay Panel.

She is also a member of the Kent and Medway STP Patient & Public Advisory Group

One of the judges for the Thames Valley & Wessex Leadership Academy awards she recently became an assessor for the NHS Leadership Academy Graduate Management scheme.

Until her recent move to Kent, Carol was Co-chair of NHS Thames Valley Patient Experience Operational Group and part of the team for the Leading Together programme co-presenting it at Expo 2016.

She worked closely with Health Education Thames Valley on the e-version of the ‘Dementia Handbook for Carers and Care Providers’ having been part of the team behind the original printed version. Also the NHS on their commissioned project  ‘Patient leadership: Taking patient experience to the next level?’  The final report having been submitted to the Beryl Institute Patient Experience Journal is now being viewed worldwide.

Carol lives in Tunbridge Wells and lists travel, photography, and cooking among her hobbies.

Future conferences of interest:

Measuring, Understanding and Acting on Patient Experience Insight
Monday 18 September 2017, De Vere West One Conference Centre, London

Measuring & Monitoring Patient Safety: Patient Safety Surveillance in Real Time
Friday 29 September 2017, De Vere West One Conference Centre, London

7 July 2017


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