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Development of Joint User / Carer Outcome Measures for Older Adults with Mental Health Problems

Development of Joint User / Carer Outcome Measures for Older Adults with Mental Health Problems. Michael Fullerton. Background Context of the Service.

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Development of Joint User / Carer Outcome Measures for Older Adults with Mental Health Problems

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  1. Development of Joint User / CarerOutcome Measures for Older Adults with Mental Health Problems Michael Fullerton

  2. Background Context of the Service The integrated CMHTs for older people provides a specialist, secondary service that complements and supports primary care and other local health and social care services for older people with mental health and social care needs. The service is targeted at older residents of the Royal Borough of Kensington and Chelsea (RBKC) with complex mental health problems.

  3. The Royal Borough of Kensington and Chelsea (RBKC) is an inner London borough in West London. • It is an urban area and was named in the 2001 census as the most densely populated local authority in the United Kingdom, • According to the 2001 census the borough has a population was 79% White, 4% Black African and 3% Black Caribbean. • It also ranks top in the proportion of older adults who live alone with no formal / identified carer or family member.

  4. Reasons for considering this topic. • The UK Government and Department of Health have a focus on outcomes and have developed “Outcome Frameworks for Health and Social Care”. • Lord Darzi’s Interim Report on the future of the NHS recommends that patient-reported outcome measures (PROMS) should have a greater role in the NHS • To provide evidence to the Care Quality Commission (CQC) and Service Management of the positive benefits of both aspects of the joint service.

  5. Why develop a joint outcome measure • Both organisations needed to measure the outcomes of the joint service. • It was necessary to measure all aspects of the joint service – not just health. • It is more economical and effective to collect and analyze data once rather than doing it separately. • It is better for users and carers if they only have to fill in one form. • It promotes partnership working and best practice. • There is best practice in each component of the joint service. • There are proven benefits of collaborative working (NHS Institute for Innovation and Improvement, 2011).

  6. Project Proposal • Development Proposal • Present Proposal to CNWL Senior Management Team • Meet with Local Authority Management Lead • Meet with Local Authority Audit Lead • Meet CNWL Audit Lead • Develop First Draft of Questionnaire • Present First Draft to CNWL Senior Management Team • Present First Draft to Local Authority Management Team • Present First Draft to RBKC Service User Group • Incorporate changes and produce final draft • Present Project and Questionnaire to chosen pilot clinical team. • Run Pilot • Collection of completed questionnaires and compilation of results • Presentation of Results to joint LA and CNWL Management Teams

  7. The Process: how was the measure developed? • A rapid literature review suggested that there were few if any joint user outcome forms in use in England and fewer for older adults with mental health problems (OAMH). • RBKC had developed a User Outcome Form, based on existing nationally validated questions in the Department of Health user experience surveys wherever possible, to measure the seven Our Health Our Care Our Say outcomes (also used by Commission for Social Care Inspection and CQC in assessing evidence of Council ASC performance).

  8. The “Our Health Our Care Our Say” measures were: • Improved health and well being. • Improved quality of life. • Improved economic well being. • Making a positive contribution (involvement). • Increased choice and control. • Being treated with dignity and respect. • Freedom from discrimination and harassment

  9. The Design • The original RBKC user outcome form was developed with staff and users from 2007 to 2008 and following successful pilots with people with physical disabilities, older people and some younger mental health clients was reviewed and extended to most client groups and carers from 2008 to 2009. • The NHS was also developing patient-reported effectiveness and outcome measures covering similar outcomes in the PROMS and PREMS development. These patient-reported questions came from a pilot tool developed by a CNWL consultant (Whelan et al 2010). • Both questionnaires were user self-reported outcome measures (as opposed to staff assessed measures or activity-based performance indicators) and both looked at the actual experience of users on a range of outcomes/dimensions.

  10. The Questions • Overall, how satisfied are you with the help you received from this service? • Since I received services my health and well being has improved • Since I received services my economic well being (money, income, employment etc) has improved • The social services I received have improved my quality of life • The community health services I received have improved my quality of life (e.g. your GP, district nurse, rehabilitation team or podiatrist etc) • I was given enough information to enable me to exercise choice and control about which health and social services I received and how I received them. • I was involved as much as I wanted to be in decisions about my care and services • I feel I was treated fairly and not discriminated against due to race, religion, culture or gender

  11. The Questions • I was treated with dignity and respect by staff in this service. • I feel safer or less at risk as a result of the services I received. • I had confidence in the service's ability to help me or the person I care for. • I felt well supported by this service. • Lately, I have felt better in myself as a result of the care received from this service. • Lately, I have been more able to do things that are important to me as a result of my care from the service. • Lately, I have felt that my quality of life has improved because of the involvement of the service. • I was satisfied enough with this service that I would recommend it to a friend or family member

  12. The survey process: how did the Survey operate? • The clinical team for the pilot was chosen • Timescale for the pilot was chosen • It involved handing out the forms at review or at discharge from the service. • With a stamped addressed envelope • The data was analyzed independently of the provider teams by CNWL audit and shared by CNWL and RBKC

  13. Findings: what was the response? • 45 forms were handed out to users at review and or discharge • 30 people filled in the form and sent it back (23 users and 7 carers on their behalf). This represented the relatively high response rate for a postal survey of 66.6 per cent.

  14. Findings - what were the results? The most positive responses were for: • Improved quality of life due to social services -100 per cent • Involved in decisions about care - 100 per cent • Treated fairly - 100 per cent • Treated with dignity and respect - 100 per cent • Had confidence in services ability to help - 100 per cent • Felt well supported by the service - 100 per cent • Felt better in myself - 100 per cent • Felt quality of life has improved - 100 per cent • Satisfaction - 96.7 per cent

  15. Findings – % of positive responses

  16. Summary and conclusions • The form appeared to work with a 67 per cent response rate. • This represents the first joint collection of user and carer reported outcomes in line with the new focus on outcomes and the systematic collection of health and social care data. • It enables us to look beyond simple reduction of clinical symptoms (assessed by staff) or activity-based performance measures towards the self-reported practical outcomes that users and carers really value as improving their lives. • It also enables us to measure users views on the way the service is provided (such as being treated fairly or with dignity and respect, etc.). • It enables us to compare and benchmark data with other national surveys that use the same questions.

  17. Summary and Conclusions • Users and carers reported very high levels of satisfaction and positive outcomes. This is in line with other user surveys in RBKC and with last years ASC only survey • The survey gives us evidence of user reported improvements and outcomes which can be reported to the CQC and to ASC and NHS Commissioners. (Previously we were unable to give CQC hard evidence of improved outcomes as a result of the introduction of the new OAMH service.) • This is also very positive information to report to staff as it shows how much users and carers appreciate the positive effects of their services and hard work. • Both users and staff reported that they preferred user reported outcomes to activity or process based performance measures. • It has proved the possibility of using a combined ASC/NHS form for administration in a joint service.

  18. Summary and conclusions • It is relatively short, easy to administer and analyze and cost effective/cheap – as it is handed out as part of the routine review process – not as a separate extra survey. • It may allow CNWL and RBKC to develop a measure of service effectiveness/Value for Money (VFM), in line with the Department of Health proposal for a measure comprising activity, user experience/outcomes and cost – as activity and cost alone are insufficient. • The form can easily be adapted to reflect changes in national outcome surveys, as the NHS and ASC outcome measures are developed.

  19. Future Work Both CNWL and RBKC are now reviewing the collection of user/carer outcomes and deciding whether or not to continue the collection in RBKC to provide information over time, to extend the user outcome survey to other teams/services and/or to start exploring the possible use of outcome information in developing measures of service effectiveness/VFM as suggested by the Department of Health (Medcalf, 2009; Patel et al., 2011). The user outcome measures can be adapted to meet any future outcome measures developed by the Department of Health. For example, the satisfaction question will remain as an ASC outcome measure but a new composite quality of life measure may be developed from the ASC User Survey.

  20. References • Frommer, Michael; Rubin, George; Lyle, David (1992). "The NSW Health Outcomes program". New South Wales Public Health Bulletin 3 (12): 135 • Department of Health (2010) The NHS Outcomes Framework 2011/12, HMSO http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_123138.pdf • The NHS Information Centre Department of Health (2011) User Experience Surveyshttp://www.ic.nhs.uk/services/social-care/social-care-collections/user-surveys • Department of Health (2009) Guidance on the routine collection of Patient Reported Outcome Measures Department of Health http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_092647 • Reay N (2010) How to measure patient experience and outcomes to demonstrate quality in care Nursing Times 23 Feb 2010 106 (7) 12-14 • NHS Institute for Innovation and Improvement (2011) Collaborative working, NHShttp://www.leadershipdevelopment.nhs.uk/framework/deliveringtheservice/collaborative.aspx • Department of Health (2006) Our Health Our care Our Say. A new direction for community serviceshttp://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Healthcare/Ourhealthourcareoursay/index.htm • Department of Health (2007) Putting People First. A Shared vision and commitment for the transformation of adult social care http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_081119.pdf • Whelan P, Andrews, T, Patel, S and Lewis A (2010) Taking the Cinderella speciality to the PROM: developing a patient-related outcome measure for an older adult mental health service. Quality in Ageing and Older Adults, Volume 11 Issue 4

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