Shared Decision aking

QAH Hospital

Portsmouth 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

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Portsmouth Hospitals NHS Trust Page 2 18/04/2015 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

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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!

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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

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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.

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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

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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

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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

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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’

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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

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Portsmouth Hospitals NHS Trust Rheumatology OPD- Patient and public involvement

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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

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Portsmouth Hospitals NHS Trust Rheumatology OPD

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Personalised care plans- in print- Bone health, Myositis, AS, Osteoporosis in draft- SLE, Sjogrens, PSA, Behcets, Scleroderma -in planning stage- Vasculitis,

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Development of the Scleroderma Care Plan

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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

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Results from Scleroderma Care Plan Pilot

§  Pilot with 6 patients §  Between November 2013 and April 2014 §  Patients feedback collected in May 2014

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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

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Did Patients feel more in Control of their disease with the Care Plan

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Were patients satisfied with the care plan

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Scleroderma Care Plan

§  6 out 6 patients thought that they would continue to use the care plan in the future.

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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.

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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

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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.

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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/

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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

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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.

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Thanks to the Portsmouth Rheumatology team

Health & Medicine

Shared Decision aking