Increasing Patient Participation

in their care and treatment

Royal College of Psychiatrists Council

Luke O’Shea

Twitter: @lukeoshea1

NHS England

6th June 2014

Structure of presentation

1. Patient Participation – The NHS Mandate

2. Three great challenges for the NHS. Safety, changing burden of disease and finance

3. Doing more of the same? – increasing pressure on staff or patients as source of value

4. Empowering patients to act – the evidence

5. Personal Health Budgets in mental health

2

Patient Participation – The NHS Mandate

3

The NHS Mandate – Requires a

shift of power to patients.

The NHS Mandate Objective:

• “To ensure the NHS becomes dramatically better at involving patients… empowering them to manage and make decisions about their own care and treatment.”

• “by 2015… more people managing own health… everyone with LTCs including MH, offered a personalised care plan… patients who could benefit have the option to hold a personal health budget… information to make fully informed decisions.”

• Shared decision making, self-management, PHBs, information and personalised care planning all linked

4

Three Great Challenges facing the NHS

5

1) Safety - Patient participation first

line of defence. Francis & Berwick

6

“Patient involvement is crucial to the delivery

of appropriate, meaningful and safe

healthcare…The goal is to achieve a

pervasive culture that welcomes authentic

patient partnership – in their own care”

Berwick Report

“The patient was presented with medication &

discharged. No one had told her of her diagnosis.”

Francis Report

Moral case. When your life is

defined by NHS – participation in

care can transform your life

• Frustrated, articulate man, Robert, with ‘treatment resistant schizophrenia’ miles from home. Wanted flat, a job and friends for years. Care cost £100k per year for 7 years. No plan. No voice.

• Middle aged woman, Mary, with personality disorder, in poor out of area private provision. Shared bathroom between 10 on ‘ward’ with others. Terrible life. No plan.

7

“I thought my life had come to an

end… machine tied me to hospital.

Home dialysis changed my life.”

Kidney patient.

Community Mental Health

Survey 2013 – where are we?

Consultation on decisions about treatment:

• 72% had views taken into account generally

• 45% felt views were not taken into account or partly taken into account in deciding medication

More serious involvement in treatment:

• 42% of care plans set out person’s own goals and of those 42% are being helped to achieve their goals

Care planning and care plans

• 14% on CPA have not got a care plan. 42% not on CPA have not got a care plan.

Powerful testimonies when “felt listened to”, but less on involvement of patients in care and goals seems hard. 8

Major cultural barriers – around half

patients as involved in care as would like

% who felt as involved in inpatient care as they would like

9

0

10

20

30

40

50

60

70

2004 2005 2006 2007 2008 2009 2010 2011 2012

2) Changing burden of disease:

Multiple LTCs the typical LTC.

10

Ref: Stewart Mercer based on Scottish study based on data from 310 General Practices.

11

0

2

4

6

8

10

12

14

16

18

2000 2008 2016

Nu

mb

er w

ith

lo

ng

-term

co

nd

itio

ns (

mil

lio

ns)

One LTC Two LTCs Three+ LTCs

Sources: ONS population projections and General Household Survey

Source: Department of Health analysis of ONS projections and GHS

Estimate for changes in co-morbidity patterns over the next decade, England

Future growth 3+ LTCs. Single LTC decline.

Participation and personalisation vital.

What business

are we really in?

• 15m with LTCs

• 70% spend

• Massive rise in

population with

a co-morbidity

• Most GP

sessions LTCs

• 77% bed days

3) Finance - demands greater patient contribution as

greatest untapped source of expertise & value

• 4% rise in activity pa. Pay for activity (PbR) not patient capacity. Need honest debate.

• ‘Call to Action’ - £30 billion shortfall.

12

Health Spending 1949-50 to 2010-11

Doing more of the same? – increasing pressure on staff or patients as source of value

13

Investing in the capacity of

patients to create value in health

• Current model medical staff, tech and drugs create value. QIPP 1 model was pay and provider efficiency.

• More of the same model will mean unsustainable demands on staff.

• QIPP 2 – New model must build capacity of patients to add value into the health system.

• Increasing contribution of 53m patients. All other industries look do this (e.g. banks, supermarkets).

• Contribution of 3m volunteers in health and care

• Iceberg of care – unlocking patient and community value “below the surface” key to NHS survival

NHS | Presentation to [XXXX Company] | [Type Date] 14

Only Patients can Save the NHS

15

Empowering patients to act – the evidence base

16

Patient Activation - better self mgmt,

health outcomes & lower costs.

Patient Activation – knowledge, skills and beliefs

Knowing something with help/harm health is not enough

Asset not deficit based measure –

building hope & resourcefulness

18

Source: J.Hibbard, University of Oregon

Patient Activation leads to

better outcomes & lower costs

• Study of 25,047 patients found strong evidence that patients with greater levels of activation experienced better health.

• A study of 479 patients with various long term conditions found that increased activation led to a variety of improved self-management behaviours

• In a study of 5002 patients activated patients were x10 more likely to report high satisfaction. Even seeing same clinician & setting, had much better patient experience.

• Hibbard found that patients with the lowest activation levels had average costs that were 8 % higher in the base year and 21 % higher in the next year than patients with the highest activation levels.

Evidence strong that ‘Patient Activation’

leads to better outcomes & lower costs

Active and

empowered

patient Engage

with

clinician

more

Reduced

service

use Able to

work

more

Meds

use

improves

Lifestyle

improve

ments

e.g. diet

Info

seeking

Better

disease

manage

ment

Study of 25,047

patients showed

greater levels of

activation

experienced

better health.

Other studies

show improved

self-management

behaviours and

reduced service

utilisation.

Personal Health

Budget trial of

2000 people

showed improved

quality of life and

fewer admissions ‘Patient Activation’ a term for confidence, skills & knowledge

Interventions that build patient

activation – strong evidence base

Shared Decision Making, including Patient Decision Aids

• Better experience of care, some reduction in use of services, less surgery.

Personal Health Budgets & personalised care planning

• RCT: cost effective, improved Quality of Life, best for high needs. Other studies show impact on carer well-being

Self-Management Support, such as Expert Patient

• Impact of behaviours, Quality of life, symptoms and better use of resources.

• Not just technical information, but behaviour change

NHS | Presentation to [XXXX Company] | [Type Date] 21

Clinician seem lukewarm about

activation. Where are doctors?

2009 study:

• CS-PAM found to reliably measure clinician attitudes to patient role in

care process

• Appeared to show only lukewarm support for patient activation:

22

Patient follows medical advice

Patient can make independent judgments

Patient able to function as member of care team

Patient is an independent information seeker

CS-PAM statements in 4 groups: Clinicians

strongly endorsed

Less likely to

endorse

Personal Health Budgets in mental health

(thank you for your ongoing help!)

23

Personal Health Budgets stories -

families take control & participate

NHS | Presentation to [XXXX Company] | [Type Date] 24

Putting patients in the driving seat of

their care - Personal health budgets

Having a personal health budget:

• radically changes the relationship

between the health professional and

patient to a much more equal one.

• Delivers integration at individual level

and higher quality care.

• Highly effective for complex needs

population supported to live at home.

Includes Winterbourne level complexity

• A budget not be right for everyone, but

the principle of patients in the driving

seat of their care is essential.

• enables a wider range of possible

solutions than traditionally

commissioned services.

25

Evidence: better outcomes lower

cost – mental health very strong

• Personal health budgets were independently evaluated in a large controlled trial

2009 – 2012. Outcomes also tracked in University of Lancaster survey.

• Budget holders and their carers both had better quality of life

• Reduced unplanned admissions and overall service use

• Cost effective overall and major savings for complex needs

• The benefits were related to how personal health budgets were implemented, a

critical factor being people need real flexibility over how the budget was spent to

meet agreed outcomes

• People themselves describe the difference as living not existing

• People with higher levels of need benefited most regardless of diagnosis

• Effective for both mental and physical health conditions

26

Right to a Personal Health Budget

27

• We currently have a twin track approach, introducing a legal right to have a personal health budget for those in receipt of continuing health care (56,000) and then supporting and encouraging CCGs to offer them more widely

• Ministers are keen to extend legal rights to have a personal health budget progressively, in line with the Mandate. This starts with people with complex needs, where benefits are greatest.

• This could be the centre-piece of wider rights in the NHS to put patients in the driving seat of their care. New rights to determine, shape and choose their care.

• Ministers are particularly interested in expanding work on mental health

Discussion

28

1. Do you agree that a safe, sustainable and meaningful NHS depends on patient participation?

2. Could patient activation be piloted in mental health? Could we survey doctors in the College?

3. How do we ensure the high quality roll out of personal health budgets. Should some clinical services be included?

4. How do we improve care planning with patients’ aspirations and goals at the centre?

Tweet me at @lukeoshea1

Thank you to the college for all the ongoing help.