1. Implementing the Care Act 2014: The role of prevention and early intervention in supporting carers Karen Windle, BA(Hons), M.Sc., Ph.D. Reader in Health, Lincoln Institute for Health Kwindle@lincoln.acuk

2. Why is prevention important? Longterm conditions account for high NHS spend and service use (DH, 2008). Over 50 per cent more people in England are likely to have three or more long-term conditions by 2018, compared with 2008 (Select Committee Public Service and Demographic Change, 2013). Number of older people aged 80 and over projected to double by 2037 (King’s Fund, 2014). Care environment is becoming increasingly fragmented (New Economics Foundation, 2014). Financial constraints have tightened ‘eligibility’; 39% reduction in social care packages for older people, between 2011 – 2013 (Fernandez et al., 2013). The provision of unpaid care is increasingly common as the population ages, the demand for will more than double over the next thirty years (Pickard, 2008).

3. Why is it ‘prevention’ additionally important for carers? Increased burden, stress and depression and reduced self-efficacy (Sörensen et al., 2006) Feelings of entrapment and guilt (Martin, Gilbert, McEwan & Irons, 2006) Increase risk of loneliness and social isolation (Windle et al., 2011) Increased risk of physical ill health including cardiovascular disease and immunosuppression (Brodaty & Donkin, 2009)

4. Policy drive Well-being and prevention is a guiding focus of care ‘the well-being principle’; applicable in any and all care and support functions. (DH, 2014: 1) There must be a radical upgrade in prevention and public health – the nation must get serious about prevention’ (NHS England, 2014: 7).

5. What is well-being? Wellbeing refers to ‘feelings’ (emotional and psychological wellbeing, including self-esteem) and the ability to ‘function’ socially (social wellbeing, including the ability to cope [be resilient] in the face of adversity). It also includes being able to develop potential, work productively and creatively, build strong and positive relationships with others and contribute to the community (Foresight 2008). http://www.bis.gov.uk/foresight/our- work/projects/published-projects/mental-capital-and- wellbeing/reports-and-publications

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7. Preventative interventions Health promotion/ education (including vaccination, screening, health literacy) Proactive Case Finding Intermediate care Case/ care management Falls prevention Assistive Technology (telecare, telehealth) Health promotion/ education (including vaccination, screening, health literacy) Proactive Case Finding Intermediate care Case/ care management Falls prevention Assistive Technology (telecare, telehealth) Social prescribing Befriending/ Mentoring Time banks/ volunteering Hobby or educational classes. Physical activity (exercise classes, T’ai Chi, Walking groups etc.) Healthy living centres mental health/ dementia café’s Information/ advice/ advocacy Handy person schemes Social prescribing Befriending/ Mentoring Time banks/ volunteering Hobby or educational classes. Physical activity (exercise classes, T’ai Chi, Walking groups etc.) Healthy living centres mental health/ dementia café’s Information/ advice/ advocacy Handy person schemes Rapid response teams Hospital-at-Home Supported home- from-hospital In-hospital admission avoidance: GP at A&E, AEC Rapid response teams Hospital-at-Home Supported home- from-hospital In-hospital admission avoidance: GP at A&E, AEC

8. Evidence base: Well-being services

9. Evidence base: Primary, secondary, tertiary care

10. ‘Fragmented and underdeveloped’ evidence? Few evaluations explored if reported changes (e.g., quality of life, service use, morbidity, mortality) were maintained long-term. No evidence that details the type of preventative ‘packages’ that should be provided or at what time point (e.g., self-referral, diagnoses of condition) these should be offered. Little data around effective targeted services for all population groups; the majority of the interventions involving white females. Urgent need to understand, identify and map the impact of differential preventative pathways.

11. ‘ There’s no clear guidance about care and support. I feel like Alice in Wonderland – why can’t I be signposted to what I need to know or be able to access what I need to help me?’ (CQC 2010:25)

12. Navigating the care system Confusion around which services to access for specific needs (Manthorpe et al., 2009) Rise of specialism and niche practice (Detsky et al., 2012). Navigating the care system has been described by patients as complex and frustrating (Bhandari and Snowdon, 2012). Telling the same story to professionals and go through the same assessments (Ravenscroft, 2010). Poor navigation = overuse, underuse or inappropriate use of care services (Jackson et al., 2012). Patients delay care, fail to get care or seek support in inappropriate but more accessible settings (Albert, 2012).

13. What are Care Navigators? Central intervention within integrated services (and frailty pathway). The Care Navigator role identifies services, signposts and supports access (Windle et al., 2010; Windle et al., 2009). Identified core tasks: need assessment, communication, coordination and follow-up of care across the relevant pathway (Ferrante et al., 2010; Griswold et al., 2010; Lemak et al., 2004).

14. Care Navigator process Referrals received statutory, voluntary services. CN carry out face-to-face visits over a time-limited period (6 or 12 weeks). Work alongside the user, helping them build an action plan. User builds a personalised plan over which they can take control.

15. Navigating access to care Worked alongside the carer and the supported individual to enable self-directed support. Unit cost of £42 per visit (£125) Health related quality of life improved by 17% Improved benefit take up (£10 per person) Cost-effective (QALY) Per person ‘saving’ in secondary care service use of £114

16. The future role of preventative services? The ‘well-being principal’ (Care Act, 2014: 1) and the ‘radical upgrade in prevention and public health (NHS, 2014:3) is challenged through a lack of financial support (NEF, 2014). Necessary to put in place the structural change of a single health and social care budget that incorporates e.g., housing, transport. Single commissioning point will enable a focus on preventative services. Preventatives services need to be implemented as a coordinated whole to ensure access to well-being, primary, secondary and tertiary services. Care or community Navigator is adopted to ensure implementation of a ‘seamless’ pathway. Care delivery needs to be rebalanced to support the promotion of health and well-being rather than the treatment of disease.

17. Karen Windle +44(0)1552 886173 kwindle@lincoln.ac.uk www.lih.lincoln.ac.uk www.lincoln.ac.uk Thank you. Questions or comments?

18. Department of Health (2014) Care and Support Statutory Guidance: Issued under the Care Act 2014. London, Department of Health. (https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/366104/43380_23902777_Care_Act_Book.pd f Accessed 9 May 2015)https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/366104/43380_23902777_Care_Act_Book.pd f DH (2008) Raising the Profile of Long Term Conditions Care: A Compendium of Information. London, Department of Health. Fernandez, J-L., Snell, T., Wistow, G. (2013) Changes in the Patterns of Social Care Provision in England: 2005/6 to 2012/13. PSSRU Discussion Paper 2867. London, PSSRU. King’s Fund (2014) A New Settlement for Health and Social Care: Final Report. London, King’s Fund New Economics Foundation (2014) The wrong medicine: A review of the impacts of NHS reforms. http://www.neweconomics.org/publications/entry/the-wrong-medicine (Accessed 13 December, 2014). http://www.neweconomics.org/publications/entry/the-wrong-medicine NHS England, (2014) Five Year Forward View. http://www.england.nhs.uk/wpcontent/ttp://www.england.nhs.uk/wpcontent/ Select Committee Public Service and Demographic Change. (2013) Ready for Ageing? (HL2012 – 13,140). Windle, K. (2015) What role can local and national supportive services play in supporting independent and healthy living in individuals 65 and over? Future of Ageing: Evidence Review, Foresight, Government Office of Science. Available at: https://www.gov.uk/government/publications/future-of-ageing-preventive-health-and-social-care-services (accessed 11 October, 2015). Care Quality Commission (2010), The State of Health Care and Adult Social Care in England: Key Themes and Quality of Services in 2009. Care Quality Commission, London. Pickard, L. (2008) Informal Care for Older People Provided by Their Adult Children: Projections of Supply and Demand to 2041 in England. PSSRU Discussion Paper: 2515, University of Kent, Kent. Windle, K., Francis, J., Coomber, C. (2011) Preventing loneliness and social isolation: Interventions and Outcomes. SCIE Research Briefing 30, SCIE, London. Windle K, Wagland R, Forder J, D’Amico F, Janssen D and Wistow G (2009) National Evaluation of Partnerships for Older People Projects: Final Report. PSSRU, University of Kent, Canterbury. Research funded by Department of Health Policy Research Programme. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_111240http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_111240 Brodaty, H. & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11 (2), 217-228. Martin, Y., Gilbert, P., McEwan, K. & Irons, C. (2006). The relation of entrapment, shame and guilt to depression, in carers of people with dementia. Aging & Mental Health, 10 (2), 101-106. Sörensen, S., Duberstein, P., Gill, D. & Pinquart, M. (2006). Dementia care: mental health effects, intervention strategies, and clinical implications. The Lancet Neurology, 5, 961-973. References