This document discusses transforming the relationship between patients and the NHS to be more person-centered. It outlines that policies have increasingly focused on personalized care, evidence shows approaches like shared decision making and self-management support can improve outcomes. However, reality still lags rhetoric, with limited patient involvement and coordination of care. Fully engaging patients in their care can improve health, experiences, and outcomes, but cultural and organizational challenges remain. The document calls for prioritizing patient partnerships, reframing engagement as core to the NHS mission, and investing in skills and tools to realize more person-centered health systems.

1. “Transforming the relationship
with patients and communities”
(Are we getting there?)
Jeremy Taylor, CEO, National Voices
At Challenge 2020
6 July 2016

2. • Coalition of 160+ charities
• Founded 2008
• Championing person centred care, a strong
patient and citizen voice, and services built
around people
• Standing up for voluntary organisations and
their vital work for people’s health and care

3. “The NHS will shape its services around the needs and
preferences of individual patients, their families and their
carers.
The NHS of the 21st century must be responsive to the
needs of different groups and individuals within society,
and challenge discrimination on the grounds of age,
gender, ethnicity, religion, disability and sexuality. The NHS
will treat patients as individuals, with respect for their
dignity.
Patients and citizens will have a greater say in the NHS,
and the provision of services will be centred on patients’
needs”

4. “The patient will be at the heart of everything the NHS
does. It should support individuals to promote and manage
their own health.
NHS services must reflect, and should be coordinated
around and tailored to, the needs and preferences of
patients, their families and their carers….
Patients, with their families and carers, where appropriate,
will be involved in and consulted on all decisions about
their care and treatment.
The NHS will actively encourage feedback from the public,
patients and staff, welcome it and use it to improve its
services.”

5. “Even people with long term conditions, who tend to be heavy
users of the health service, are likely to spend less than 1%
of their time in contact with health professionals. The rest of
the time they, their carers and their families manage on their
own.
As the patients’ organisation National Voices puts it:
personalised care will only happen when statutory services
recognise that patients’ own life goals are what count; that
services need to support families, carers and communities;
that promoting wellbeing and independence need to be the
key outcomes of care; and that patients, their families and
carers are often ‘experts by experience’.”

6. “One of the great strengths of this country is that we have an
NHS that - at its best - is ‘of the people, by the people and for
the people’.
Yet sometimes the health service has been prone to
operating a ‘factory’ model of care and repair, with limited
engagement with the wider community, a short-sighted
approach to partnerships, and underdeveloped advocacy and
action on the broader influencers of health and wellbeing.
As a result we have not fully harnessed the renewable
energy represented by patients and communities, or the
potential positive health impacts of employers and national
and local governments.”

7. So what’s changed?
1. the policies got better
• expert patients - supported self management
• from “choice” & “voice” to person centred care
• “no decision about me without me”
• integrated care
• asset based community approaches
• growing focus on culture and behaviour
• growing focus on digital empowerment
• Mr Lansley’s greatest achievement (guess?)
• Five Year Forward View

8. Policy climbed the ladder

9. So what’s changed?
2. Growing body of evidence & practice
• shared decisions about treatments
• information, education and support for self-management, including peer
support, for people living with long term conditions and disabilities
• care and support planning, using the principles and stages outlined by
National Voices, TLAP, C4CC, RCGP and others.
• access to personal records – proven to support self management, shared
decisions and people’s commitment to courses of prevention and
treatment
• health coaching
• peer support
• asset based approaches such as social prescribing
• personal budgets to give people greater control over the way they
maintain their health and wellbeing
• experience based co-design
• Use of “I” statements from National Voices etc
• Integrated care pioneers, vanguards etc
www.nationalvoices.org.uk/evidence
Realising the value programme

10. Person centred coordinated care
“I can plan my care with people who
work together to understand me and my
carer(s), give me control,
and bring together services
to achieve the outcomes important to
me.”
I have the
Information
I need…
I am supported
to achieve my
goals….
The professionals work as a
team.
I always know who is
coordinating my care
I’m involved as
I want to be in
decisions…
I work with my
team to agree a
care and support
plan…
When I move between settings
there is a plan in place….

11. So what’s changed?
3. Social, cultural and tech change
• generations X, Y, Z & consumer culture
• data, transparency & the culture of “feedback”
• internet, smartphones, social media, apps
• creation of online patient communities
• growing voice of voluntary sector
• growth in knowledge & practice of social movements
• emergence of theory & practice of patient leadership
• rising inequality

12. Primary care Living with long term condition/s I have a written care plan 3.3% 2015
Inpatient care I was as involved as I wanted to be in decisions
I was as involved as I wanted to be in decisions (learning disability)
59% yes definitely
49% yes definitely
2015
I was asked to give my views 79% no 2015
Community
mental health
I know who is coordinating my care and they do it very well 59% 2015
I have definitely agreed with someone from the services what care I will
receive
42% 2015
I was as involved as I wanted to be in decisions 50% yes definitely
38% yes to some extent
2015
Adult social
care
How I am helped or treated makes me think & feel better about myself 61% 2014-15
I feel in control of my daily life 77% 2014-15
End of life care staff always treated the dying person with dignity and respect 59% (doctors) 2014
53% (nurses)
Services definitely worked well together in the last 3 months 42% (2014)
So what’s changed?
3. reality lags rhetoric

13. Why does this matter?
When people are fully engaged:
• Better health & wellbeing
• Better decisions
• Better experience
• Better outcomes
• Better tailored services
• Better resource allocation
www.nationalvoices.org.uk/evidence
Realising the value programme

14. Transforming the relationship: what
gets in the way?
• Nice to have/we’re too busy/we haven’t got the money – a
question of priorities
• I can’t deal with this right now- a question of bandwidth
• Good idea but not my job - endless organisational change,
silos, fragmentation
• a top down culture (still)
• a culture of interventionism
• lack of clarity of meaning “voice, choice, personalisation,
engagement, participation, involvement co-production etc
etc”
• lack of clarity of purpose, leading to tokenism, death by
process, “engagement industry”

15. Transforming the relationship: what
will it take?
• Prioritising it
• Reframing it as core business
• Knowledge, skills, confidence, motivation – at
every level
• Alignment of levers, incentives, nudges
• Investment
• Agitation
• Celebration

16. Six principles: a culmination?

17. Six principles: a culmination?

18. Thanks for listening!
@NVTweeting
@JeremyTaylorNV
www.nationalvoices.org.uk