Implementing the Care Act 2014: The role of prevention and early intervention in supporting carers...

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

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).

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)

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).

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).

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Continuum of prevention

Interventions to:

• Support users with few care needs or symptoms of illness.

• Maintain independence and good health

Primary

Prevention

Interventions to:

• Support users at risk of specific conditions or events; e.g., falls, diabetes, stroke, hypertension.

Secondary

Prevention

Interventions to:

• Focus services toward relatively ill and frail older people, designing and implementing support that

can minimise disability or deterioration from established diseases.

Tertiary

Prevention

Interventions to:

• Support emotional and physical well-being.

• Increase the ability to function through developing potential and building strong and positive

relationships.

• Support contributions to the community.

Well-Being

Preventative interventions

Primary Prevention

Secondary

Prevention

Well-Being

Tertiary Prevention

• 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• Rapid response teams

• Hospital-at-Home

• Supported home-

from-hospital

• In-hospital admission

avoidance: GP at A&E,

AEC

Evidence base: Well-being services Intervention Strength of evidence

High Impact

Low/ No Impact

Positive early

evidence

No evidence

Well-Being: Social inclusion, loneliness Befriending Social Prescribing services Mentoring ‘Closed’ group activities Social group activities (therapeutic writing, art, singing hobby or educational)

Volunteer schemes/ timebanks Computer or internet usage Well-being: Physical health Healthy walking groups, dancing, yoga, chair-based or non-aerobic exercise

Gardening Assistive Living technology (aids and adaptations)

Well-being: Information, advice, signposting Welfare benefit advice Care Navigator Well-being: Practical support Housing repairs Handy person schemes Gardening

Evidence base: Primary, secondary, tertiary careIntervention Strength of

evidence Gaps/ Challenges

High Impact

Low/ No Impact

Primary and secondary prevention Vaccinations WHO targets not achieved in

influenza or pneumococcal vaccine. Case finding, coordination or care management

Little evidence of improved care outcomes (reduction in admissions)

Reablement Continuing process difficulties in transferring older people to further provision.

Tertiary prevention Rapid response teams No evidence on prevention of

hospital admissions. No evidence on user satisfaction.

Ambulatory emergency care units Internal evaluations have found tentative indications of effective outcomes. Research of poor quality and validity.

‘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.

‘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)

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).

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).

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.

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

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.

Karen Windle+44(0)1552 886173kwindle@lincoln.ac.uk

www.lih.lincoln.ac.ukwww.lincoln.ac.uk

Thank you.

Questions or comments?

• 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.pdf Accessed 9 May 2015)

• 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).• NHS England, (2014) Five Year Forward View. http://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_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