Patients as Partners 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 system Batalden, 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 repair Gerda 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 MILES 15 stays in psychiatric units One year trapped on MH ward “delayed discharge due to housing” 2 residential rehabs 1 therapeutic community 1 Social Services hostel Over 100 acute hospital admissions 18 months in supported housing 2 substance misuse day programmes 2 dual diagnosis day programmes

Frozen Assets

CONSULTATION FATIGUE

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.

Transformative Co Production involves challenging existing cultures and forming new structures of delivery to embed co production rather than occasional consultation and involvement which doesn’t necessarily result in fundamental change Practical Approaches Co Production. (Dept of Health 2010).

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

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

Leadership is not a position or title It is action and example

FOCUS ON ATTRIBUTES NOT ROLES • Lead ourselves effectively (e.g. having a clear sense of what

motivates us, our strengths, weaknesses, beliefs, values, purpose and vision).

• Lead by example – showing in our behaviour the values and principles associated with the changes we seek to make.

• Building effective relationships built on trust, credibility and respect.

• Are able successfully to challenge, manage conflict and disagreement.

• Communicate effectively, particularly using the skills of dialogue (advocacy and inquiry) and coaching.

• See the big picture, act strategically whilst paying attention to results and outcomes.

Adapted from Bring it on – 40 Ways to Support Patient Leadership (Centre for Patient Leadership)

IT TAKES ALL SORTS Formal representatives Activists Designers Entrepreneurs Innovators Researchers Educators/Trainers/coaches Advocates Peer supporters Community champions

What’s stopping

us?

Defensive positions

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

In moments of crisis the wise build bridges

Alison Cameron @allyc375

The foolish build dams

Nigerian Proverb