Patients as Agents of Change .

Bridging the Gap between “Them”& “Us”

We are at a turning point in health policy: the nature of 21st century health, changes in society and technology call for a radical change of mindset and a reorganisation of how we govern health in the 21st century.

This changes the role of the health sector, of health professionals, of patients and of citizens – and of other sectors and societal actors including the private sector.WHO 2020 Framework

Current healthcare system boundaries are limited by a professional-knows-best mindset which can be blind to the powerful actions and forces that shape health outside of the boundaries of the healthcare systemBatalden, BMJ 2015

NHS England Five Year Forward View

A new relationship with patients and communities

We have not fully harnessed the renewable energy represented by patients and communities

But collectively and cumulatively (these initiatives) and others like them will help shift power to patients and citizens,

Patients are impatient of being treated like chipped flowerpots in for repairGerda Cohen

Self government by the patients must involve pretence because as soon as they encroach on real power they are brought up short Gerda Cohen

Where are we on the ladder?

Patient Leadership

Patient Voice/influence

Passive Patient

FREQUENT FLYER MILES15 stays in psychiatric unitsOne year trapped on MH ward “delayed discharge due to housing”2 residential rehabs1 therapeutic community1 Social Services hostelOver 100 acute hospital admissions18 months in supported housing2 substance misuse day programmes2 dual diagnosis day programmes

Frozen Assets

Beyond traditional Involvement to

Co-production and Patient

Leadership

Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change NEF/NESTA 2009

CORE PRINCIPLES Assets: Transforming the perception of people from passive recipients to equal partners. Capabilities: Building on what people can do and supporting them to put this to work. Mutuality: Reciprocal relationships with mutual responsibilities and expectations. Networks: Engaging a range of networks, inside and outside ‘services’ including peer support, to transfer knowledge. Blur roles: Removing tightly defined boundaries between professionals and recipients to enable shared responsibility and control. Catalysts: Shifting from ‘delivering’ services to supporting things to happen and catalysing other action.

Patient Leadership?

Patient Leaders are those patients, users and carers who have the confidence and capability to influence change. Their main purpose is to improve health and well-being in the community and/or improve health and social care services. They do this by working with others to influence decision-making. David Gilbert and Mark Doughty

Patient Leadership?The new concept of Patient Leadership…describes an aspiration – that a portion of these active patients may come to be recognised as service leaders, equal in esteem and influence to managerial and clinical leaders.National Voices

What’s stopping

us?

Defensive positions

It seems safer to embrace what we know than to let go of it for fear of the unknown. Narcotics Anonymous

The moats we dig between patients and clinicians can drain spirit from both.Don Berwick

In moments of crisis the wise build bridges

The foolish build damsNigerian Proverb