“Transforming the relationship with patients and communities”

(Are we getting there?)

Jeremy Taylor, CEO, National Voices At Challenge 2020

6 July 2016

• 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

“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”

“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.”

“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’.”

“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.”

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

Policy climbed the ladder

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/evidenceRealising the value programme

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….

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

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 definitely49% yes definitely2015

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 definitely38% 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% 2014-15End 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

Why does this matter?

When people are fully engaged: • Better health & wellbeing• Better decisions• Better experience• Better outcomes• Better tailored services• Better resource allocationwww.nationalvoices.org.uk/evidenceRealising the value programme

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”

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

Six principles: a culmination?

Six principles: a culmination?

Thanks for listening!

@NVTweeting@JeremyTaylorNV www.nationalvoices.org.uk