Self Management Support Dr. Patrick Doorley, HSE 25/10/2012

Self management long term conditions What individual or carers can do to manage their condition and their general health and well being. Managing Symptoms Medication Treatment Emotional impact Adapting to impact on activities of daily living Watching for changes, coping if symptoms worsen, knowing when to seek help Healthy lifestyle e.g. diet exercise, not smoking Knowing when to seek professional support Requires support from health services- e.g. information, improving individual’s confidence and skills.

Traditional paternalistic practise styles Create dependency Discourage self-care Ignore preferences Undermine confidence Do not encourage healthy behaviours.

Common adjustment problems

The goal of self management support is to enable people to perform three major functions. Medical management of their condition Carrying out normal roles and responsibilities Managing the emotional impact and the adjustment problems associated with having a long term condition (Lorig & Holman 2003). Helps people to maintain independence and avoid hospital admissions.

Structured self management programmes Aim - support people to self-manage Disease specific focus on educating people in medical and technical aspects. E.g. Dafne Desmond Peer led, community programmes aim to help people to manage illness and cope with social and emotional aspects Stanford model best known (called Expert Patient programme in Uk,Quality of Life programme in Donegal).

Evidence on disease specific programmes Studies on programmes for chronic lung disease, diabetes asthma heart failure and arthritis found evidence of reduced hospital admissions improved clinical outcomes increased quality of life and wellbeing. In relation to diabetes better control, improved self-management skills, increased self empowerment and food related quality outcomes.

Evidence on peer led community programmes e.g. Stanford model Systematic review of evidence by Centres for Disease Control (2011) of two programmes from RCTs Generic Chronic Disease Self Management Programme, a six week series of peer led classes Arthritis Self Management Programme designed for people with arthritis.

CDC Findings CDSMP showed improvements in: general self efficacy - pain management and other symptoms psychological health status-anxiety, depression physical health- fatigue health behaviour-exercise. They also suggested that the ASMP and the CDSMP contribute to improvements in psychological health status, self efficacy and some health behaviours over 12 months. Similar findings from HSE Quality of Life Programme (Donegal) and Arthritis Ireland programme.

Overview of Evidence Systematic reviews by Coulter and Ellis (2006), Battersby(2010), and De Silva(2011), which report on a broad variety of interventions indicate that: Information only has limited effectiveness Self management associated with improvements in knowledge, coping behaviour, adherence, self efficacy and symptom management. Some evidence of reduction in health service utilisation and enhanced quality of life. Improvements in health status tend to diminish over time, quality of life effects more likely to be sustained.

Summary of most effective forms of self management support Structured use of targeted information resources within clinical care Structured self-management education and support for people with specific conditions integrated with routine care planning processes and care pathways Generic self-management education programmes (peer led, community based) Interactive web-based self-management education programmes Medication aids, information and other assistive aids and devices Support groups and networks Home-based self-monitoring (anti-coagulation blood pressure and diabetes) Telephone support/telecare. www.pickereurope.org

Conclusions Peer led self management programmes improve self efficacy and quality of life Condition specific programmes improve clinical outcomes Both should be available to everyone who could benefit Self-management is a hugely under-utilised resource in the health service.

Working together to make it better

Core elements of self management support Partnerships in care Information Education Social support-emotional, peer and network support Technology Formal care planning processes, with clear referral pathways.

HSE A-Z of diseases conditions Quality assured information on 850 topics written in everyday language. Original text drafted by medical editors, approved by subject matter experts for NHS. Edited by senior clinicians with a view to ensuring that content is consistent with clinical practice in Ireland. Links to other websites e.g. NGOs Aimed at empowering public and patients on health and illness. To be launched before year end.

HSE Progress Clinical programmes developing evidence based guidelines,clinical pathways for long term illnesses A –Z diseases conditions Framework for self-management will be finalised soon Agreement to implementation of action plan will need to be negotiated within HSE

Thank-you for your time and attention Dr. Patrick Doorley National Director HSE Patrick.doorley@hse.ie