The presentation that Alison Cameron made in the opening session of the NHS Transformathon, 27th January, 2016. The NHS Transformathon was a 24 hour virtual event to connect people from all over the world who are leading the way in transforming the health and care system. It took place on 27/28 January 2016. The entire event was a live broadcast on Google hangout. You can watch all of the sessions. Go to http://theedge.nhsiq.nhs.uk/transformathon/ and click on the title of the session you would like to view. The content is free and available to all. If you tweet about the content of the Transformathon, please use the hashtag #NHSTform

1. Patients as Agents of
Change .
Bridging the Gap between
“Them”& “Us”

2. 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

3. 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

4. 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
,

5. Patients are impatient of being
treated like chipped flowerpots
in for repair
Gerda Cohen

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

8. Where are we on the ladder?
Patient
Leadership
Patient
Voice/influence
Passive Patient

10. 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

11. Frozen Assets

14. Beyond traditional
Involvement to
Co-production and
Patient
Leadership

15. 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

16. 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.

17. Patient Leadership?

19. 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

20. 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

21. What’s
stopping
us?

23. Defensive positions

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

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

30. In moments of crisis the wise build bridges
The foolish build dams
Nigerian Proverb