The Future Patient: A manifesto for patient-led health and healthcare

The Future Patient: A manifesto for patient-led health and healthcare

Background 

The Future Patient Manifesto is a picture of the possible future role of patients and carers – those people who have had or have, life-changing illness, injury or disabilities and who have used, or use, healthcare services regularly.

I don’t mean to be too grandiose. But the ideas below outline what patients and carers could and should be able to do in order to support improvement and transformation of healthcare. it describes both the process towards, and the outcome resulting from, real patient-professional partnership working. I hope that it might form the basis of long term strategy in health services to make them truly patient-driven or patient-led.

These ideas are founded on my health and healthcare experiences from being an adolescent with a serious back injury, through watching granny suffer dementia and seeing my mother care for her, through six years of psychiatric illness, ten years of caring for my mother with severe depression and neurological disease and witnessing the deaths of my mother, father and close friends and relations in quick succession. It is grounded also in three decades of work trying to support better working between patients and professionals in order to improve services. It is fueled by a deep sense that ‘patient and public engagement’ is not working and itself requires transformation.

I have been inspired by many ‘patient leaders’ who are now beginning to succeed in reshaping health and healthcare. They are moving beyond traditional engagement structures and systems and performing different roles in order to change the cultures and systems of healthcare. They include pioneers like Alison Cameron, Anya De Iongh, Michael Seres, Ceinwen Giles, Trevor Fernandes, Oli Anderson, Dominic Stenning, Dominic Makuvachuma-Walker, Karen Maskell, and many many more.

I have been deeply influenced by working with Mark Doughty at the Centre for Patient Leadership. This manifesto is partly motivated by recent disappointments about the way our work and ‘patient leadership’ has been co-opted by the system. At a personal level, this statement is my way of resurrecting meaning and hope from what has happened as my confidence has been shaken. To me, it serves as a foundation for action and a direction of travel. I hope it might do the same for others.

The vision for the future patient is based on a belief that patients and carers do not have a sufficient say in healthcare policy and decision-making. I am weary of politicians, policy ‘experts’, health professionals, managers and even some patient groups, purporting to articulate our interests and make professionally defined assumptions about what needs to happen.

I do not ‘represent’ anyone. But I do have an emerging vision of the role of patients and carers in the design and delivery of future health and healthcare services. I believe that the future of health and healthcare services is only sustainable if this vision becomes a reality.

The Future Patient Manifesto is part of a picture of what health and healthcare might look like – what can, should and will happen in order for health and healthcare to be patient-driven and truly patient-centered.

These are only ideas and a work in progress. I hope that it helps in some small way to bring on the day when patients, service users and carers – like many marginalised groups before us – become true partners in policy and practice decision-making.

 

The Future Patient will…

  1. Be in control of their own health and resources – they won’t be ‘put’ at the centre of their own healthcare – but help lead it. Health professionals will work with them to serve their needs above those of any institution or professional silo.
  2. Be in charge of their own information (about their body, mind, support, care and treatment) and be full partners in shared decision-making, able to give permission to others in the system to share information when and if necessary.
  3. Change the face of healthcare through increased use of technology and social media – driving changes in healthcare policy and practice that make traditional models of care delivery obsolete.
  4. Support better health and well-being in the community as well as improvements in the system, alongside other citizens and community champions.
  5. Be full partners in planning, designing and undertaking research – from informing priorities to working with researchers to design and deliver implementation of findings.
  6. Reshape clinical and non-clinical education by co-leading the design and delivery of local and national training and learning.
  7. Work in equal partnership with health professionals and policy makers at every level – moving beyond being ‘engaged’ and fostering true dialogue. They will be joint decision-makers on health policy, regulation and practice.
  8. Work together to pool resources and become joint commissioners of health and healthcare services. Patient-led commissioning will see patients forming their own organisations to commission services.
  9. Be entrepreneurs and innovators – supported and supporting each other to invent and apply new technologies to their everyday lives and hence transform ways of working.
  10. Co-deliver services, moving from advocacy and peer-to-peer support, to being fully fledged partners in the healthcare delivery team. Patient-led organisations and healthcare delivery teams will become the norm.

I would love to know what you think, and what else should be in there.

(c) David Gilbert 2014

David Gilbert is a former mental health service user. He has 25 years experience of working with, and for patients. Amongst other things, he was Head of Patients and the Public at the Commission for Health Improvement, and Patient and Public Involvement Director at NHS Croydon. He has also worked at the Kings Fund, OPM and Consumer Association. He set up InHealth Associates seven years ago. He was co-founder of The Centre for Patient Leadership that originated the notion of patient leaders and patient leadership (with Mark Doughty), and was awarded ‘star leader’ status in the recent HSJ/NHS England Patient Leader Awards. He currently works part time as Patient Director, Sussex Musculoskeletal (MSK) Partnership – the first role of its kind in the NHS. David is a leading thinker and doer in the field of patient and public engagement and is a respected strategist, facilitator, researcher, trainer, writer, connector and communicator. He has worked with over a hundred local, national and international organisations to help develop effective ways that patients can be true partners in health and healthcare.