Shared Decision aking

QAH HospitalPortsmouth Hospitals NHS Trust
Shared decision making and the role of personalised
care planning for patients with Scleroderma
Julie Ingall
Senior Sister and Rheumatology Clinical Nurse Specialist
Paula White
Rheumatology and Clinical Research Nurse Specialist
20th June 2015

QAH HospitalPortsmouth Hospitals NHS Trust Page 218/04/2015 Page 2
Session aims
Introduce the concept of shared decision making
Identify the role of personalised care planning for patients with
Scleroderma
Portsmouth Hospitals NHS Trust experience
The Scleroderma personalised care plan

Equity and excellence, Liberating the NHS 2010
New vision for the NHS
Change in culture
Shift from paternalistic care to
Person centered care-
-greater control
-more choice
-increased involvement in service
plans
-improved access to information
Andrew Lansley,
Health Secretary
Shared decision making will become the norm within the NHS-
No decision about me, without me!

Why change?
For patients with long term conditions-
-have poorer quality of life
-account for 69% of the NHS budget
-high consumer of unplanned services (GP, A&E, admissions)
For the NHS-
Greater freedom of information
Improved management of risk
Standardisation of care
90% of individuals with long term conditions feel
comfortable taking responsibility for their own health
18/04/2015 Page 4

Shared decision making
The process by which a patient and their healthcare professional
reach a decision together about treatment options and next steps.
It requires patients and professionals to understand what is
important to each other when choosing a treatment, weighing up
clinical evidence and individual preferences.
Working in partnership Health care
professionals
Patients and
carers
85% of clinicians felt patients were included in decision making
but only 50% of patients felt involved in decision making.

Key components
Expert,
proac,ve,
trained

Health
care
Professionals

Ac,vated,
informed,

engaged
pa,ents

Organisa,onal
ethos

Support
tools

Recording
systems

Care
planning

Goals
Preferences and
values
Social circumstances
Attitudes to risk
Diagnosis
Prognosis
Treatments
Outcomes
Management
Partnership working

Understanding shared decision making
- challenges for patients
Obtain information
Process information
Understand information
Communicate perception
Focus on medical needs & treatments
Limited attention on social, psychological & holistic
needs
Patients making best
decisions about care
& treatment

Shared decision- ongoing challenges for patients
Reduced confidence in choices
Overwhelmed
Difficulty with instructions
Adherence to regimes
Limited influence over their care
No plan for managing their condition
Once best
decisions made
about care &
treatment

Personalised care planning?
A written (or electronic) record
Owned (and looked after) by the patient
For patients to share with family / carers and
health care professionals
Can include multiple diseases
Used at any stage
Adapted for individual needs
Dynamic / reviewed
Used continually or as required
Holistic – seeing the person ‘as a whole’

Personalised care plan core components
-disease specific information
-symptom management
-complication management
-consultation planning and review
-goal setting
-health promotion information
-national and local resources

Portsmouth Hospitals NHS Trust Rheumatology OPD-
Patient and public involvement
Page 1118/04/2015 Page 11
Connective Tissue Disease Conference
Scleroderma support group
CTD clinics
RATS/PAIL/Direct assessment
DAWN-blood monitoring
Patient pathways
Patient focus groups
Friends and family test
Charity partnership working
Personalised care plans

Portsmouth Hospitals NHS Trust Rheumatology OPD
Page 1218/04/2015 Page 12
Personalised care plans-
in print- Bone health, Myositis, AS,
Osteoporosis
in draft- SLE, Sjogrens, PSA, Behcets,
Scleroderma
-in planning stage- Vasculitis,

Development of the Scleroderma Care Plan
Page 1318/04/2015
Clinical
Nurses
planning:

Literature,
suppor,ng
informa,on,
format
&
design

Focus
group
–
local
Scleroderma
pa,ents

and
Portsmouth
Scleroderma

support
group

Healthcare
professional
review
within
Portsmouth
Hospitals
NHS
Trust

Pilot
group
-‐
pa,ents

Scleroderma
Care
Plan
Launch
-‐
Portsmouth
June
2014

1st
draN

2nd
draN

Final
draN

Results from Scleroderma Care Plan Pilot
§  Pilot with 6 patients
§  Between November 2013 and April 2014
§  Patients feedback collected in May 2014
Page 1418/04/2015

Scleroderma Care Plan Feedback
§  5 out 6 patients had used their care plan
§  3 out 6 patients had used their care plan for their own personal
use
§  3 out 6 patients had used their care plan for their own use and
with a healthcare professional
Page 1518/04/2015

Did Patients feel more in Control of their disease with the
Care Plan
Page 1618/04/2015

Were patients satisfied with the care plan
Page 1718/04/2015

Scleroderma Care Plan
§  6 out 6 patients thought that they would continue to use the
care plan in the future.
Page 1818/04/2015

Comments about the using the care plan.
§  Think this is more useful to people who have just been
diagnosed.
§  Blood Test results not sent to GP on 2 occasions.
§  For years I ignored any problems by saying it is only part of
CREST but now by using the care plan and getting the results
of any tests or appointments, I have it has made me realise
certain things I have been doing wrong or things I should be
doing.
Page 1918/04/2015

Comments about using the care plan:
§  Would use the care plan with healthcare professional in the
future in needed to.
§  Made it easier for Doctor to read off full list of medication
§  Good prompt to discuss any new symptoms.
§  I would have used it more if I had information about test results.
I have had no letters about my lung function test or my heart
tests
Page 2018/04/2015

Conclusion from Feedback:
•  Positive Feedback
•  No major problems identified
•  Obtaining test results from GP/Hospital problematic for some
•  Informative and useful document
•  Patient’s happy to continue using the document.
Page 2118/04/2015

What next?
§  Publish the document in an A5 format
§  Review on annually
§  Adopted and adapted by the Scleroderma Society and now
available to members on their website
www.sclerodermauk.org/patient-activation/
Page 2218/04/2015

Individuals living with long term conditions spend
approximately 3 hours every year with
healthcare professionals…
for the other 8,757 hours they look after themselves
Personalised care plans can
-promote patient choice and control
-provide information and improve planning
-prevent complications
-enhance coordination of care
-support self care and confidence
In summary

References
1.  Department of Health (2012) Long Term Conditions Compendium of
Information Third Edition www.gov.uk/government/news/third-edition-of-long-
term-conditions-compendium-published
2.  RCGP (2011) Care Planning, Improving the lives of people with long term
conditions www.rcgp.org.uk/clinical-and-research/clinical-resources/
collaborative-care-and-support-planning.aspx
3.  NHS England (2014) GP patient survey
www.england.nhs.uk/statistics/2014/07/03/gp-patient-survey-2013-14
4.  Department of Health (2010) Equity and excellence: Liberating the NHS
5.  www.nursingtimes.net/nursing-practice-clinical-research/primary-care/
examining-how-personalised-care-planning-can-help-patients-with-long-
term-conditions/5006427.
6.  Ipsos/Mori April 2009
7.  Department of Health. Research evidence on the effectiveness of self care
support report. London. 2007.

Thanks to the Portsmouth Rheumatology team

Shared Decision aking

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