Angela Coulter Director of Global Initiatives June 2012 CO-PRODUCING HEALTH CHANGING RELATIONSHIPS

Angela CoulterDirector of Global Initiatives

June 2012

C O - P R O D U C I N G H E A LT H

CHANGING RELATIONSHIPS

CHRONIC DISEASE

• 36,000,000 people die from non-communicable diseases each year

• NCDs account for 63% of global deaths

• More than 90% of these deaths occur in developing countries

• Most could have been prevented2011 UN High-level meeting on NCDs 2011 3

MANAGING CHRONIC DISEASE

Professional care – 5 hours per year

Self-care – 8,755 hours per year

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AN UNTAPPED RESOURCE?

WHAT WE HAVE LEARNT

Traditional paternalistic practice styles…….

• Create dependency• Discourage self-care• Ignore preferences• Undermine confidence• Do not encourage

healthy behaviours

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INFORMED, EMPOWERED PATIENTS

Have the knowledge, skills and confidence to manage their own health and healthcare,

And they……• Make healthy lifestyle choices• Make informed and personally

relevant decisions about their treatment and care

• Adhere to treatment regimes • Experience fewer adverse events• Use less healthcare

THROUGH THE PATIENT’S EYES

• Confusing• Fragmented• Unresponsive

DIABETES WEB OF CARE

ALZHEIMER’S WEB OF CARE

WHAT PATIENTS WANT

• People want co-ordination. Not necessarily (organisational) integration.

• People want care. Where it comes from is secondary.

National Voices 2012

Informed,involvedpatient

Productiveinteractions

Prepared,proactive

practice team

Improved outcomes

DeliverySystemDesign

DecisionSupport

ClinicalInformation

Systems

Self-Management Support

HEALTH SYSTEMCOMMUNITY

Chronic Care Model

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SHARING EXPERTISE

Clinician

• Diagnosis• Disease aetiology• Prognosis• Treatment options• Outcome probabilities

Patient

• Experience of illness• Social circumstances• Attitude to risk• Values• Preferences

SHARED DECISION MAKING

A process in which clinicians and patients work together to select tests, treatments, management or support packages, based on clinical evidence and the patient’s informed preferences.

KEY COMPONENTS

1. Reliable, balanced, evidence-based information outlining prevention, treatment, or management options, outcomes and uncertainties

2. Decision support with clinician or health coach to clarify options and preferences

3. System for recording, communicating and implementing patient’s preferences

DECISION AIDS: THE EVIDENCE

• In 86 trials addressing 35 different screening or treatment decisions, use has led to:

• Greater knowledge

• More accurate risk perceptions

• Greater comfort with decisions

• Greater participation in decision-making

• Fewer people remaining undecided

• Fewer patients choosing major surgery

Stacey et al. Cochrane Database of Systematic Reviews, 2011

SELF-MANAGEMENT SUPPORT

YEAR OF CARE: CARE PLANNING

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Individual ’s story Professional ’s story

Share and discuss information

Goal Setting

Action ActionActionAction

Knowledge and health

beliefs

Emotional Behavioural Social Clinical



Goal Setting




Goal Setting



beliefs


beliefs

EmotionalEmotional BehaviouralBehavioural SocialSocial ClinicalClinical



Goal Setting




Goal Setting



beliefs


beliefs




Goal Setting




Goal Setting



beliefs


beliefs


Engaged,

informed patient

HC

P com

mitted to

partnership working

Organisational processes

Commissioning- The foundation



Goal Setting



beliefs

Emotional Behavioural Social Clinical



Goal Setting




Goal Setting



beliefs


beliefs


The clinic experience

Registration, recall, review, and

follow up

Access & communication

Named contact

IT templates

Awareness of approach to self-

management

Consultation skills / competencies

Multi-disciplinary team working

Knowledge of local options

Clinical expertise

Structured education/ Information

Awareness of process & options

Pre-consultation results

Access to own records

Emotional & psychological

support

WHAT WORKS?OVERVIEW OF 250 SYSTEMATIC REVIEWS

Building health literacy

• Information and education

• E-learning and ‘virtual’ support

• Telephone helplines

Shared decision making

• Question prompts

• Health coaching• Patient decision

aids• Communication

skills training

Self-management support

• Collaborative care planning

• Self-management education

• Simplified dosing and medicines information

• Home-based self-monitoring

Health promotion

• Opportunistic advice

• Targeted social marketing

• Telephone counselling

• Parenting programmes

• Mass media campaigns

• Community development

WHAT ARE THE CHALLENGES?

• Inflexible systems

• Time/resources• Clinical culture

WHAT COULD HELP?

• Clear policy goals• Effective clinical leadership,

teamwork and training• Patient and public engagement in

service redesign• Integrating decision support and

collaborative care planning into clinical pathways

• Metrics for monitoring process and outcomes

FOR MORE INFORMATION ……

Open University Press, 2011

Shared Haemodialysis

CareMartin Wilkie

Programme director26th June 2012

Renal Replacement Therapy (RRT) in the UK

There were 49,080 adults receiving RRT in the UK on 31st December 2009

Haemodialysis (HD) in 44% of dialysis patients.

Most people receiving centre based HD are passive recipients of care

Self-care has been part of dialysis from the beginning and takes several forms

Nitsch D et al NDT(2010)

Jonkoping, Sweden Guys & St Thomas’s, Kings

Examples of in-centre self-care dialysis

Dialysis Practices That Distinguish Facilities with Below- versus Above-Expected Mortality

Dialysis facilities with below-expected mortality reported that - – patients in their unit were more activated and

engaged, – physician communication and interpersonal

relationships were stronger, – dieticians were more resourceful and

knowledgeable, and – overall coordination and staff management were

superior Clin J Am Soc Nephrol 5: 2024 –2033, 2010.

Training in flexible, intensive insulin management toenable dietary freedom in people with type 1 diabetes:dose adjustment for normal eating (DAFNE) randomised

controlled trial

DAFNE study group BMJ 2002

Several interventions are necessary for success

Y & H Shared Haemodialysis Care ProgrammeDate Event

May 2010 Y&H RSG appoint Home therapies & Self care leadInspirational Team development, concept preparation, seeking support from all parties, pilot shared care dialysis work starts in York and Sheffield

Oct 2010 £400K award from Health Foundation - Closing the Gap Through Changing Relationships Programme£50K award from NHS Kidney Care

Jan 2011 Set-up phase began

Jun 2011 Key posts appointed : clinical nurse educators, project managerCourse development and piloting

Jan 2012 Start of implementation phase

Y & H Renal Network6 centres, 19 satellites, 1800 HD patients

ObservationsInfection control

Access including needlingPrescription management

Running dialysisAlarms and safety

Setting up and stripping downWaste disposal

Degrees of shared haemodialysis care

Models of haemodialysis careFullySelfCaring

CompletelyAssisted

Effectiveness enhanced care

interaction

Efficiency nurses being involved as

problem solvers and trainers

Patient at the centre empowered through

the experience of self-care

Equity access to

self-care in the hospital

Safety greater patient understanding

Timeliness no need to

wait for tasks to be

done

The Shared HD Care Package1. Training for nurses

Nursing journal

2. Training for patients during dialysis3. Clearly defined competencies4. Literature to support training

Patient hand book documenting progressPatient information leaflet

5. MeasuresOutcome, process, balancingStaff morale survey

• % of haemodialysis patients undertaking all aspects of their haemodialysis care

• % of haemodialysis patients undertaking at least five aspects of their haemodialysis care

• % of patients who have been asked about participating in shared haemodialysis care

• % of renal unit staff who have completed the purpose-designed training programme

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Outcome measures

Oct-11

Nov-11

Dec-11

Jan-12

Feb-12

Mar-12

Apr-12

May-12

Jun-12Jul-1

2

Aug-12

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Process Measures

% of staff who are enrolled on the training programme

% of patients able to establish access (putting needles into their fistula)

Yorkshire & the Humber Shared Haemodialysis Care Programme - Measures

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Balancing Measures % of patients satisfied or very satisfied with their dialysis care [score 5 or above]

% of staff satisfied with providing dialysis care [score 5 or above]

Aug-11

Sep-11

Oct-11

Nov-11

Dec-11

Jan-12

Feb-12

Mar-12

Apr-12

May-12

Jun-120%

5%

10%

15%

20%

25%

30%Staff on training program

A call to action for Shared Haemodialysis Care

The benefits of greater patient involvement in the management of long term conditions have been demonstrated

People on dialysis tell us how much they value having greater involvement in their care

With your help, we would like to support centre-based haemodialysis patients to greater self-efficacy

….and provide robust evidence of its valueWe need a DAFNE for dialysis!

Sharing Haemodialysis Care in Sheffield and York

Matrons: Melinda Howard & Christine StubbsShared Haemodialysis Care Educators: Katy Hancock, Collette Devlin & Tania Barnes

Sharing the Haemodialysis Care (SHC)

Development of supporting materials!

The Patient Information Leaflet

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Local patient & staff

photographs

Local contact

details on reverse

Focus group comprised of a

group of patients &

staff

Distributed in Renal Clinics &

HD waiting areas

The patient competency handbook

“Gives a clear idea of what is available for patients to do”

“Eye catching design”

“Easy to use to teach

patients”

“Clean, simple & informative”

SHC Course For Nurses

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1-11 Day

Module Course

3 Day Module Course

1 Day Follow up Course (6 months after completion)

• Disseminated training by staff who have completed 3 day course

• 1- 2 hour Group sessions

• 1-1 with Shared Care Educator• Future plans for e learning

This is part of a 3-tiered approach to training

Sharing Haemodialysis Care Course For

NursesA custom built 3 day course incorporating the following:

•Learning Styles & Teaching practice

•Research Evidence & Benefits

•Motivational interviewing

•The Patient Handbook

•Patient/Carer Experiences

•Quality improvement & Auditing

•Barriers

•Sustaining

•Cascading 44

The Course Journal...

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• Sent to delegates pre course

• Self assessment pre course

• Homework during course

• All inclusive

• Sent to delegates pre course

• Self assessment pre course

• Homework during course

• All inclusive

Some of the course delegate comments….

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‘’The programme has acted as a springboard for development within our unit. I believe this will have a positive benefit for patients’’

‘’The programme has acted as a springboard for development within our unit. I believe this will have a positive benefit for patients’’

‘’I have enjoyed the three sessions and will go back to share and encourage

staff/patients with a much greater understanding’’

‘’I have enjoyed the three sessions and will go back to share and encourage

staff/patients with a much greater understanding’’

‘’I have learnt some valuable things about

myself as well as patient needs’’

‘’Renewed the existing relationship with my patients

& has made it a more positive one’’

‘’No more groundhog

day!’’

Barriers and successes……What have we learned?

• Key speakers & key topics to maximise learning potential

• Order & method of delivery

• Staffing selection to maximise networking opportunities

• Who to engage first – tiered approach

• Ongoing support in clinical areas

• 6 month review & re-engagement with course colleagues

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Pilot course September 2011

What staff and patients are saying?

Visit our display area to see:

A Letter From A Patient At York

A Healthcare Support Worker’s Account From Sheffield

What is it like to participate in Shared Haemodialysis Care?

Liz Glidewell, Stephen Boocock, Kelvin Pine; Rebecca

Campbell, Shamila Gill and Martin Wilkie

on behalf of the Yorkshire and Humber Sharing Haemodialysis Care project team

Background

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Shared haemodialysis care

Empowerment

Satisfaction

Safety

What did we do?

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Doing less

Doing more

What did we ask about?

How do you think about Shared Care?

What do you do when you come in for haemodialysis?

Why do you do what you do, and how does it affect you?

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What did people talk about?

conditions

identityresources

How do you think about Shared Care?

• Getting rid/reducing the number of nurses

• It’s taking too long• Challenging patient

questions

• Time with patient• Doing what meant to be doing -

ethos• Supporting as a team• Shared on good/bad days• Assistance when needed• No fixed training, relevant to

patient

• Don’t want to know anymore

• Have to do everything• Making us go home

• Health in danger• Not for everybody• Couldn’t put needles in• Come and go• A separate unit

• Contributing towards your care

• Choice as much or as little as you want – no force

• Educated about treatment and disease

• Confident and competent

• Taking back control

Why patients

are involved

Why patients are not

involved

Why staff are not

involved

Why staff are

involved

What do you do now that you’re involved in shared haemodialysis?

•Variability

•Different approaches for different patients

•“let the patient make decisions”•Professional development

•Nurses teaching less experienced staff

•Healthcare assistants teaching nursing staff

•Teaching patients•Working more closely with others

•e.g. dieticians and home care

•Getting to know the patient

•Patient’s pace

•Raise awareness of SHC 55

Not involved?

• I don’t do anything (observations?)

• “I’ll try a bit more” and that’s how it built up

Additiona

l involvement

• Competing to have better outcomes

• Teaching others

Full involvement

• “Home training without going home”

• Going home

Patient views Staff views

Why do you do what you do, and how does it affect you?

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Knowing what’s happening to my

body

I don’t want to go home I want to stop

here

I want to take control” “some kind of control back over an illness that takes

away so much

it gives you a lot of confidence

your fistula will last longer cause you’re not

going into a different hole each time

It’s a great free feeling

“I want to be in and out” (time)

it’s quite empowering isn’t it to be able to you know, sort yourself out

the infection rate really decreased

confidence teaching staff and patients

Appropriate timing (Before, Starting,

Day-to-day)

How has shared haemodialysis care changed relationships?

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Knowledge

Understanding

ConfidenceControl

Self-esteem and freedom

Thank-you for listening

AcknowledgementsPatients, carers and health care professionals from Yorkshire and the Humber who have contributed enthusiastically to the Shared Care Dialysis programme; the Yorkshire and Humber Renal Strategy Group; the Berkshire Consultancy, and Leeds Institute of Health Sciences.

The project is funded by the Health Foundation through the Closing the Gap through changing relationships programme and NHS Kidney Care.

Documents

Angela Coulter Director of Global Initiatives June 2012 CO-PRODUCING HEALTH CHANGING RELATIONSHIPS