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Increasing Patients’ Participation
in their treatment and care
Open House – Leicester 17th
June
Luke O’Shea
Twitter: @lukeoshea1
Dr Alison Austin
Twitter: @A_Austin4
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
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.
2) Changing burden of disease:
Multiple LTCs the typical LTC.
8
Ref: Stewart Mercer based on Scottish study based on data from 310 General Practices.
9
0
2
4
6
8
10
12
14
16
18
2000 2008 2016
Numberwithlong-termconditions(millions)
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.
10
Health Spending 1949-50 to 2010-11
Doing more of the same? – increasing pressure
on staff or patients as source of value
11
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
13
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
15
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
patientEngage
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]18
Where are we now?
What are our plans?
19
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
20
An organising model - The House of Care
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
payment approach
22
House of Care
Personal Health Budgets
23
Personal Health Budgets stories -
families take control & participate
NHS | Presentation to [XXXX Company] | [Type Date]24
Structure of Presentation
Personal health budgets:
•Nikki’s story
•The commitments
•The evidence
•Next Steps
•As part of the wider personalisation agenda
NHS | Presentation to [XXXX Company] | [Type Date]26
Nikki’s story
http://m.youtube.com/watch?v=u0FSEEWKCj4
• 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
new monies,
• 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
27
The Challenges……
… 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,
• Medication,
• NHS charges eg prescription charges
• vaccination/immunisation,
• screening,
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
• Equipment
• Personal care
• Physiotherapy
• Complimentary therapies
• Supportive technology (eg computers, ipads,
kindles)
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
life
•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
decisions.”
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
32
Where next?
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,
•Integration pioneers,
•Mainstreaming,
Where next?
If you’re going to do it… do it right
34
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 &
learning disabilities
Personal health
budgets
Year of Care
Finance& value
programme
Integration & Better
Care Fund
SEND & Children
Personalised care
& support planning
Wider context of personalisation
36
To find out more:
Personal Health Budgets
•www.personalhealthbudgets.england.nhs.uk
•Twitter:@NHSPHB
•Email: england.personalhealthbudgets@nhs.net
Or tweet Luke O’Shea or Alison Austin
•@lukeoshea1 @A_Austin4

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Leicester - Patients in Control

  • 1. Increasing Patients’ Participation in their treatment and care Open House – Leicester 17th June Luke O’Shea Twitter: @lukeoshea1 Dr Alison Austin Twitter: @A_Austin4
  • 2. 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 2
  • 3. Patient Participation – The NHS Mandate 3
  • 4. 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
  • 5. Three Great Challenges facing the NHS 5
  • 6. 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
  • 7. 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.
  • 8. 2) Changing burden of disease: Multiple LTCs the typical LTC. 8 Ref: Stewart Mercer based on Scottish study based on data from 310 General Practices.
  • 9. 9 0 2 4 6 8 10 12 14 16 18 2000 2008 2016 Numberwithlong-termconditions(millions) 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
  • 10. 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. 10 Health Spending 1949-50 to 2010-11
  • 11. Doing more of the same? – increasing pressure on staff or patients as source of value 11
  • 12. 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
  • 13. Empowering patients to act – the evidence base 13
  • 14. Patient Activation - better self mgmt, health outcomes & lower costs. Patient Activation – knowledge, skills and beliefs Knowing something with help/harm health is not enough
  • 15. Asset not deficit based measure – building hope & resourcefulness 15 Source: J.Hibbard, University of Oregon
  • 16. 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.
  • 17. Evidence strong that ‘Patient Activation’ leads to better outcomes & lower costs Active and empowered patientEngage 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
  • 18. 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]18
  • 19. Where are we now? What are our plans? 19
  • 20. 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 20
  • 21. An organising model - The House of Care
  • 22. 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 payment approach 22 House of Care
  • 24. Personal Health Budgets stories - families take control & participate NHS | Presentation to [XXXX Company] | [Type Date]24
  • 25. Structure of Presentation Personal health budgets: •Nikki’s story •The commitments •The evidence •Next Steps •As part of the wider personalisation agenda
  • 26. NHS | Presentation to [XXXX Company] | [Type Date]26 Nikki’s story http://m.youtube.com/watch?v=u0FSEEWKCj4
  • 27. • 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 new monies, • 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 27 The Challenges…… … personal health budgets are part of the solution.
  • 28. 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, • Medication, • NHS charges eg prescription charges • vaccination/immunisation, • screening,
  • 29. 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 • Equipment • Personal care • Physiotherapy • Complimentary therapies • Supportive technology (eg computers, ipads, kindles)
  • 30. 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 life •Knowing the budget up front is important A staged approach is being taken to rollout across England
  • 31. 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 decisions.” 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
  • 32. 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 32 Where next?
  • 33. 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, •Integration pioneers, •Mainstreaming, Where next?
  • 34. If you’re going to do it… do it right 34 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
  • 35. Parity of Esteem: Mental health & learning disabilities Personal health budgets Year of Care Finance& value programme Integration & Better Care Fund SEND & Children Personalised care & support planning Wider context of personalisation
  • 36. 36 To find out more: Personal Health Budgets •www.personalhealthbudgets.england.nhs.uk •Twitter:@NHSPHB •Email: england.personalhealthbudgets@nhs.net Or tweet Luke O’Shea or Alison Austin •@lukeoshea1 @A_Austin4