Supported self-management or left to get on with it? Current evidence and implications for MS
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Supported self-management or left to get on with it? Current evidence and implications for MS
- 1. Supported self-management or left to get on with it? Current evidence and implications for MS Fiona Jones Professor, Rehabilitation Research
- 3. What is the issue? 10 million affected, 120,000 people with MS Major driver of cost Ageing population Ageing population Long term needs not being met Long term needs not being met System fosters dependencySystem fosters dependency
- 4. The challenge for rehabilitation
- 5. Traditional view of self-management? Usual care/rehab Self- management programme
- 6. Continuum of self-management interventions
- 7. Most self-management programmes are based on Social Cognition theory (1997) • An individual’s belief in their own capabilitybelief in their own capability makes a contribution to motivation and action. • Self-efficacy beliefs can determine how people feel, think,feel, think, motivatemotivate themselves and behavebehave with regards to their health.
- 8. Sources of self-efficacy.. 1.1. MasteryMastery experiences- small successes 2.2. VicariousVicarious experience- watching others, stories in a workbook 3.3. Internal feedbackInternal feedback (psychological and physiological)- feeling less anxious 4.4. InformationInformation from a persuasive and credible source- encouragement, knowledge about condition, and self
- 9. Definitions: self-management support Not leaving people to ‘get on with it’ on their own…. …but supporting them to build the skills and behaviours needed to live with their long-term condition
- 10. Self-management: it’s not ‘yes’ or ‘no’ (Batterham, 2010) Level of self-management Strategies Classic ‘self manager’: Largely independent in looking after health, at least in between health episodes. Some regular health improvement activities. Initiates engagement with health and related providers when necessary or when they consider it beneficial Classic health education Supported ‘self-manager’: Able to set and commit to personal goals but requires assistance with arrangements to meet these. May have periods of significant personal discouragement and require assistance to overcome setbacks Health education Referral Relapse planning Coaching Signposting Monitoring Prompted ‘self-manager’: Able to express wishes and preferences and understands how health services and personal actions can contribute to these. Actively participates in health decisions and cooperates to the best of their ability. Piecemeal approach to personal health care actions. Coaching Organise environmental stimuli Assist to establish routines Work with families Reactive co-operator: Some capacity to express aspirations and wishes and understand health implications. Willing to participate in health decisions but easily swayed off track and has difficulty maintaining personal effort Assist to establish routines Address crises Address mental health conditions Assist families Non co-operator: Very little understanding of what is done to them and no emotional buy-in or commitment. Cooperation is piecemeal and reactive if given at all. Find something they LOVE to do Ensure crisis needs are met Treat mental health issues Assist families or carers
- 11. Self-management involves a sharing of expertise But... •Both parties must be committed •Clinicians recognise that patients can be competent decision makers
- 12. Self-management evidence Synthesis of 600 studies on self- management interventions in the UK and internationally (De Silva, 2011) •Supporting self-management can improve quality of life, clinical outcomes and health service use •Self-management initiatives can be categorised along a continuum •Little evidence about the best way to provide support •Engagement in programmes can be limited •Difficult to make direct comparisons between different interventions and their impact over time; very few longitudinal studies have been carried out. •Low intensity didactic interventions are least effective
- 13. Bridges self-management on a page … McKenna et al. 2013; Makela et al 2014; Jones et al 2012; 2011; 2009
- 14. Why do self-management programmes fail?
- 15. I want to create art, or use my brain in some other way, which doesn’t rely on recall. Its useful to function as a different person, so dementia doesn’t define me Our projects focus on the people, where they live, the issues they face.
- 16. Our projects focus on the real issues faced by practitioners, we get to know about their everyday work, training bespoke to each team
- 17. Our projects work with organisations such as working with Your Healthcare, to deliver a system wide change.
- 18. 1. 3 x half day sessions (9 hours) 2. Involving ALL staff 3. Theory, research, practice strategies 4. Using the workbook, family and friends book 5. Ways to integrate ‘7 key principles’ into everyday interactions Bridges training for workforce ‘integrating SM not adding on’
- 19. Bridges is based on Social Cognition Theory and self- efficacy principles
- 20. Enhancing self-management skills for people living with long-term neurological conditions (in Lewisham- South London)
- 21. Self-management support– its not all about the book!
- 22. Lewisham contributors Brian, 68, Parkinson’s Disease Vesna, 60, Vascular Dementia Prabhakara, 77, arthritis, heart disease, Alzheimer’s Charlotte, 38, three strokes Ayotunde, 60, ataxia Daphne, 79, dementia Darren, 19, and his Mum Faith, myotonia congenita Georgina, 53, Multiple Sclerosis James, 50, stroke Richard, 32, muscular dystrophy
- 24. Project plan
- 27. Implementation challenges About staff/services • We are already supporting self- management • We don’t have enough time to implement this • We don’t see people for long enough • About patients/families • Poverty • Mental health • Behavioural problems/alcoholism • Home environment: hoarding, chaotic, infestation • Homelessness • Feeling of entitlement, or reliance on ‘the system’ • Family either too involved, or not involved enough • Loneliness and isolation
- 29. A framework for developing, evaluating and implementing complex interventions: Normalisation process theory (May 2009)
- 30. Who is a good self-manager?
- 32. • ‘Wise people are full of doubts’ • Bertrand Russell
Editor's Notes
- Context – 15m people have a LTC which accounts for 70% of NHS spend. 10m of those have a LTNC. Likely to increase Over a million people in the UK are living with the effects of stroke, around half of these are dependent on others for some form of support with everyday tasks Stroke is the most complex and prevalent disability in the UK affecting around 150,000 people each year The treatment of and productivity loss arising from stroke results in total costs of £8.9 billion a year Stroke patients occupy 20% of acute hospital beds and 25% of long-term beds People with LTNC’s are a major driver of cost and activity in the NHS. Far More than just financial/economic issue – LT Physical and emotional needs not met and People are dependent on the system and ill equipped to deal with life post-statutory support – amongst others leads to isolation, readmission
- Practice has not followed policy as widely and consistently as hoped (Health Foundation, 2008) People who have the knowledge, skills and confidence to manage their condition and daily lives, have better health outcomes and care experiences (de Silva, 2011) Ability for people in Lewisham to cope with their LTC’s is challenged by significant deprivation, employment, housing and other social issues that affect their self-efficacy and health literacy (Lewisham CCG Strategy 2013) In addition this is a population who do not traditionally access group-based self-management support
- Given me more knowledge about what sort of questions to ask on an initial visit to get the true picture of a client’s issues (senior enablement officer) I will use it more in conversations and assessments with clients (social worker, LES) Provided with tools to guide a person through the self-management process (OT, LATT) Thinking of what the patient wants a lot more (OT, LES) It’s always good to remind yourself things at work which you sometimes can forget (EO) New ideas and methods of working (social worker, NI) The use of language will significantly help me to better communicate with service users and ensuring that the key goal of empowering them has been achieved (Neighbourhood team coordinator) Made me reflect on language I had been using that was counter productive to providing patient with sense of control (OT, enablement) It provides real stories to give to patients which ensures truth and faith in the process (RA, LATT) Encourages you to involve patients in their care (EO) It changes your way of thinking, I look forward to using the book and giving you my feedback (Physio, LATT and enablement) Maybe need to change our thinking that we are there to ‘do with’ rather than ‘do for’ the client (EO) Extremely informative and thought provoking sharing professional experiences (social worker, enablemtn) I reflected on my practice and I will change some if the language I use when questioning and supporting people to problem solve. It is a new and interesting way to work with clients (OT, social services)