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Increasing Patients’ Participation
in their treatment and care
Open House – Leicester 17th
Dr Alison Austin
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. Where are we now and our plans
6. Personal Health Budgets
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
• “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
• Shared decision making, self-management, PHBs,
information and personalised care planning all linked
1) Safety - Patient participation first
line of defence. Francis & Berwick
“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”
“The patient was presented with medication &
discharged. No one had told her of her
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.
“I thought my life had come to an
end… machine tied me to
hospital. Home dialysis changed
2) Changing burden of disease:
Multiple LTCs the typical LTC.
Ref: Stewart Mercer based on Scottish study based on data from 310 General Practices.
2000 2008 2016
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.
are we really in?
•15m with LTCs
•Massive rise in
population with a
•Most GP sessions
•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.
Health Spending 1949-50 to 2010-11
Doing more of the same? – increasing pressure
on staff or patients as source of value
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]12
Empowering patients to act – the evidence base
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
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
• 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
use Able to
Study of 25,047
greater levels of
Budget trial of
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,
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
•Not just technical information, but behaviour change
NHS | Presentation to [XXXX Company] | [Type Date]18
This is a huge challenge and counter
cultural in 65+ years history of the NHS
2005 study found 10% and 34% of patients with chronic
health conditions at activation levels 1 and 2 – that would
be over 6 million people
% who felt as involved in inpatient care as they would like
Plans for 2014-15: commissioning,
programmes & partnership
Systems approach to Mandate delivery:
•Partnership working – Coalition for
Collaborative Care. Social movement
•Programmes – Personal Health Budgets,
Information as Service, Shared Decision
Making & Info Standard
•Commissioning – capacity & skills, CSU
field force, direct commissioning (e.g.
renal programme), legal guidance & tools
published, primary care.
•Measurement & Incentives – Patient
Activation trial 150k people, GP contract,
Standard Contract, long term asset based
House of Care
Personal Health Budgets stories -
families take control & participate
NHS | Presentation to [XXXX Company] | [Type Date]24
Structure of Presentation
Personal health budgets:
•As part of the wider personalisation agenda
NHS | Presentation to [XXXX Company] | [Type Date]26
• They help people live with their long term conditions and
stay out of hospital:
• Change the relationship
• enable people to use NHS funding in different ways, not
• focus on outcomes,
• centre around a care plan which is agreed by NHS,
• are regularly reviewed to ensure needs are being met
and money is spent as agreed,
• facilitate integration across health and social care
… personal health budgets are part of the solution.
Personal health budgets are not
suitable for all NHS Care
Services which are excluded;
• GP services (GP contract),
• Acute unplanned care (including A&E),
• Surgical procedures,
• NHS charges eg prescription charges
What can a budget be spent on?
• Services should be appropriate for the state to provide
– not gambling, debt repayment, alcohol, tobacco
• Anything agreed in a care plan which will meet health
and wellbeing objectives
• Personal care
• Complimentary therapies
• Supportive technology (eg computers, ipads,
The independent evaluation of personal health
budgets has shown that they can lead to improved
quality of life whilst meeting health needs and
being cost effective (even saving money for some)
The national personal budget survey (POET) involving 195
PHB holders and 117 carers across 12 sites showed that:
•73% reported a positive impact on independence
•69% reported a positive impact on health
•70% carers reported a positive impact on their own quality of
•Knowing the budget up front is important
A staged approach is being taken to rollout across England
Personal Health Budgets: The Commitments
NHS Mandate Objective: “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
Legal Duties: from April 2014 everyone receiving
NHS Continuing Healthcare will have the “right to ask”
for a personal health budget. From October 2014 this
will be a “right to have”. CCGs have to have
processes in place to deliver them by April 2014
What we know:
•they work best for those with higher levels of need
•people with higher levels of need are more likely to need
both health and social care support
•They are applicable to mental and physical health
•They reduce unplanned care
•They are not right for all NHS Services
What we are working on:
•Clarifying the mandate commitment,
•Going further faster – including people who use mental
health services, people with learning disabilities and other
people with long term conditions,
If you’re going to do it… do it right
Evaluation - benefits of personal health budgets depend on
how they were introduced.
Best results – people know budget up front; advice and
support available; choice and flexibility over how to spend
budget , choice on how it is managed.
Scale-up - challenge of maintaining the integrity of the values.
To work well, personal health budgets need
good support from all parts of the system
co-production with people with direct experience
Parity of Esteem:
Mental health &
Year of Care
Integration & Better
SEND & Children
& support planning
Wider context of personalisation
To find out more:
Personal Health Budgets
Or tweet Luke O’Shea or Alison Austin
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