what, why & how? - dsr
TRANSCRIPT
What, Why & How?
What is SHC?
Why do SHC?
How to do SHC?
Shared Haemodialysis Care
Tania Barnes Aarhus - October 2018
Who am I ? • Shared Haemodialysis Care course leader
• Educator renal since 1987
• Health foundation Closing the gap 2011
• ShareHD programme 2016
www.shareddialysis-care.org.uk
Trained over 500 nurses
The Shared Care Movement
FUTURE
Closing the Gap (Y&H)
SHC Course
SHAREHD
MANY INDIVIDUAL INITATIVES
Continual development and collaboration to
share, teach, support and
report
LEARNING and COLLABORATION
• 19 trusts involved
• Individual contexts embraced
• Collaborative
BUILDING ON A CONSISTENT
FRAMEWORK
Shared haemodialysis care is… Supporting and working with, not for people Treating the person, not their illness & enabling, not disabling
What is SHC?
“We do a lot of tasks!
We are special!”
“Some of us do lots, some of us do a little.
We are all in the Shared Care gang!”
Shared Care = EQUITY
Vs
What is SHC?
Shared Haemodialysis Care is a service with
Compassion, Dignity and Respect at its heart:
Take away independence by making people
passive recipients of care
Asks what patients want and need
Provides choice
Supports patient’s decisions without coercion
Makes dialysis a positive experience
What is SHC?
The ShareHD vision: For people who receive dialysis at centres to have the opportunity, choice and information to participate in aspects of their treatment
and thereby improve their experience and their outcomes.
What is SHC?
People in control of their own health and care
“As a person and a patient, I care deeply about involvement, because I know it helps me as a patient to live more sustainably with my health conditions, and because I know that, that in turn, can help the National Health Service to exist more sustainably, too.”
Anya de Longh Patient leader and self-management coach 2014, King’s Fund
Do people want to be autonomous patients?
2,704 patients studied, mainly in outpatients large teaching hospitals in Canada
(breast cancer, prostate disease, fractures, continence, orthopaedic, rheumatology, multiple sclerosis, HIV/AIDS, infertility, benign prostatic hyperplasia, cardiac disease)
Results for preferences:
• autonomous 1%
• shared decision making 78%
• passive (older & less educated) 20%
The more familiar people became with their health condition, the greater their desire became to participate
Deber et al 2007. Health Expectations/vol 10 issue 3
1. Treat people as individuals and uphold their dignity
1.3 Avoid making assumptions and recognise diversity and individual choice
2. Listen to people and respond to their preferences and concerns
2. 1 Work in partnership with people to make sure you deliver care effectively
2.2 Recognise and respect the contribution that people make to their own care and wellbeing
2.3 Encourage and empower people to share decisions about their treatment and care
2.4 Respect the level to which people receiving care want to be involved in decisions about their own health, well being and care
This regulation describes the action that providers must take to make sure that: each person receives appropriate person-centred care and treatment that is based on an assessment of their needs and preferences. Providers must work in partnership with the person,
Why do SHC?
Experience better health and wellbeing
Reduced perception of symptoms
Improved compliance with medication
Reduced unnecessary hospital admissions
Greater confidence and sense of control
Better mental health
People with long term conditions supported to self care are more likely to:
Care planning: improving people’s lives with long term conditions 2011 Mathers N et al, RCGP
Why do SHC?
Jama 2014
McManus RJ
Effect of self-monitoring and medication self-titration on
systolic blood pressure in hypertensive patients at high risk of
cardiovascular disease: the TASMIN-SR randomized clinical
trial.
CONCLUSIONS AND RELEVANCE:
Among patients with hypertension at high risk of
cardiovascular disease,
self-monitoring with self-titration of
antihypertensive medication compared with
usual care
resulted in lower systolic blood pressure at 12
months.
Why do SHC?
Experiencing positive relationships,
Having control,
Having a sense of purpose,
Are all important attributes of wellbeing
The 5 Ways to Wellbeing was developed for the government by the
New Economics Foundation. It was found that there are 5 key areas
of your life which you can manage to improve your wellbeing.
Well being = feeling good and being able to function in the world
Why do SHC?
2008 Mental Capital and Wellbeing Project The Centre for Well –being at the New Economics Foundation (NEF)
I am no longer existing I feel
alive
Thank you, you have given
back my husband
‘I have a voice’
I can come in get on,
get off and go home
I didn’t realise it meant so much to
the staff when I put my needles in.
They’ve all come in and said well done
Its given me confidence, rather
looking at my partner, I am involved in his
treatment’
I never thought I would be able
to it
Why do SHC?
Patient quotes from Heart of England Birmingham
If you can change the way people feel, it will affect what they wish to do… and so… making people feel better about themselves, therefore affects outcomes
Why do SHC?
Behaviour and relationship change
How to do SHC? WHO (2005) emphasised that a fundamental change in perspective was needed
When we challenge our pre conceived ideas about what people are capable of... We become open to what they want!
Challenging assumptions! How to do SHC?
Which of the following dialysis related tasks would you like to try? Blood pressure
Weight
Hand and access hygiene
Prepare pack
Set-up machine
Insert needles / Connect access
Program machine
Commence dialysis
Discontinue dialysis
Disconnect access / remove needles
Strip down machine and clear away
Problem solving
Administering medications
Engaging at a level meaningful to the individual
How to do SHC?
David and Lisa’s insight
How to do SHC?
Co production & the value of creating opportunities to see patients beyond the
routine environment
Listening first before we do what we think is best
Using our patients to provide a positive influence on others
• I have got a date with a Dr Who Darlek
• I have made my
machine my friend • I go to work to look
after myself part time
• I now have an
electric bike!
What are the magic ingredients to engage patients?
• Offer the very small achievable tasks
• Gentle, casual approach - changing the power relationship to a partnership
• No contract, no pressure
• Make it easy
• Believe in people
How to do SHC?
Consider staff feelings
How to engage staff!
? Confidence ? Ability ? Importance ? How will the change affect their world?
Oh! you asked me
what I thought!
Well actually….
How to do SHC?
Rules to make it happen and measures to know it has
• National targets • Nurse codes of practice • Renal Standards and targets • Individual hospital targets • Local policies, competencies
How to do SHC?
James Paget Norfolk
Report how many patients are doing as many tasks as they wish to do.
Statement re intention to fulfil this request
Should we also include a question that checks coercion?
How to do SHC?
Lead Wave TRUST
Dr Sandip Mitra 2 Central Manchester
Dr Saeed Ahmed 1 Sunderland
Dr Praveen Jeevaratnam 1 E&N Hertfordshire
Dr Nicola Kumar 2 Guys & St Thomas Dr Jyoti Baharani 2 Heart of England
Dr Elizabeth Garthwaite 2 Leeds Dr Albert Power 2 North Bristol
Dr Alastair Ferraro 1 Nottingham
Dr Veena Reddy 1 Sheffield
Dr Babu Ramakrishna 1 Wolverhampton
Dr Mark Lambie 1 North Midlands Dr Paul Laboi 2 York
Dr Asheesh Sharma 3 Liverpool Dr Veshal Dey 3 Ayrshire & Arran Dr Ying Kuan 3 Western Trust Dr Jennifer Hanko 3 Belfast Dr Didem Tez 3 South Tees Dr Clara Day 3 QE Birmingham
The 3 Waves A Quality improvement network
ShareHD Measures:
• Patient Activation Score, EQ5D, PROM, Needling and Health Literacy questions every 6 months
• Tasks survey and HHD question (every 3 months)
Analysis includes:
Number of tasks over time related to Quality of life
Matching Tasks to levels of Hospitalisation
• Realist Evaluation of what works, for who in what circumstances and why
• Clinician Support for Patient Activation Measure (CS-PAM) for Wave 3 only
• Formal research will be published 2019 & will be openly available.
• What are the essential key performance indicators
The power of the collaborative and growing network SHAREHD AIMS –
• Increase the number of patients engaging in own care
• Increase the number of patients who are enabled to go home to dialyse
• Improve patient self-management skills irrespective of Patient health literacy level
• Use health care resources more effectively through greater patient participation
www.shareddialysis-care.org.uk
Why SHC?
Patients want it! Patients benefit all round It meets our renal and national agendas Makes long term economic sense!
In summary…
Working with hearts to change minds
Thank you for inviting me to speak and for listening today! Tweet @sharemydialysis
Patient Activation Measures How to do SHC?
Models of Shared Care
• The shared care bay
• The shared care space/s
• The transient training room
• Champion’s
• A whole team approach
• A self care area visible/ away from the unit
Consider the environment, staff, & levels of engagement
How to do SHC?
The shared care movement…
• Network of engaged staff
• All hands event – 22nd January
• Main course, managers course,
• in-house course development
• Coaching of facilitators
Tweet @sharemydialysis
Gems of learning so far…
Giving information isn’t enough to change mind sets…
focus on behavioural change for staff and patients
Many ways to do quality improvement…
we need to make it simple
Networking is very powerful…
sharing practice is heart-warming
Patients are the experts and we will only learn if we include them…
coaching in partnership needs to be our primary skill
How to do SHC?
255
42
23
15
19
90
32
1
Area figures of Staff trained from courses 1-36 + 3 Manager overview days
22
Total number of staff trained = 518 July 2018
8
1
9
2
We are living longer!
Chronic conditions are predicted to account for 60% of the global burden of disease by 2020 ( World health organisation 2017)
Demand for healthcare is increasing but the budget is not!
Why do SHC?
Supporting people to better manage their care is clearly a way forward to balance the budget isn’t it?