Living well with long-term conditions:

What next for social care?

13 September 2011

Jim McCormick

Context (1)• Living longer with long-term conditions (LTC)• Living alone: almost half (46%) of households with

care needs contain only one adult• Recognition of self-management and role of unpaid

carers runs way ahead of investment• Preventative spending: taking demand out of the

system where possible• Pressing need for more flexible/responsive use of all

care resources: “reach for the volume control not the on-off switch”

Context (2)• Elements of the Christie vision are already shared:

- Rights/citizenship focus - Personalisation through self-directed support

and self-management - Prevention- All in support of independence, empowerment,

resilience

• Embed these in practice to address current and emerging needs

Emerging needs• Children and young people with LTC: where

are they in this debate?• Long-term emotional and psychological

support needs for people with LTC and their carers

• The growing risk of loneliness as a long-term condition and poor health/depression among the over-80s

• Commissioning duties on long-stay NHS and care homes?

Perception of own health by age group

(Scotland 2008)

Mental ill health by age and sex (% scoring 4+ on GHQ12, England 2004-06)

Rights• Rights to Independent Living (14)• Human Rights and Dementia (PANEL)• Human Rights in Healthcare and Compassionate

Care focus (NHS)• A right to self-assessment in community care?• But what about rights in the face of stark

rationing? R (McDonald) v LB Kensington and Chelsea and the struggle faced by younger people with LTC to access/afford basic home care

Self-directed support• To promote changes in culture, assumptions and

behaviour around how needs are defined, support is sourced and how services engage with citizens

• Individual Budgets and Direct Payments are just one expression of SDS: what about frail, vulnerable and isolated people?

• Community approaches to self-management, e.g. for people with communication/sensory impairments?

Prevention• Public health: risks of high blood pressure,

cholesterol and obesity for some types of stroke, diabetes and vascular dementia

• Boost protective factors: maintaining social networks, access to “bits of help”, exercise

• Delaying high-cost care: later use of day-care, hospital stay and residential care

• Secondary prevention: e.g. cutting the risk of further CHD or stroke; re-ablement support

Re-ablement

• Homecare re-ablement: evidence from Edinburgh (after 12 weeks) and 5 English authorities (after 1 year) broadly positive

• But for whom: getting back on your feet, regaining functional ability versus managing a degenerative condition?

• Re-ablement elsewhere e.g. Extra Care Housing, short-term use of care homes?

A system for Wellbeing (1)• Apply these elements of a better vision for

social care consistently well. • Include a more sophisticated approach to

health care addressing complex/multiple conditions in the round.

• Recognise that ‘time and task’ is often necessary but not sufficient.

• Combined, these can create a system for wellbeing – living well with LTC.

A system for Wellbeing (2)

• Pathways to wellbeing – and the contribution of social care - may differ for people with:- Long-term, relatively stable impairments- Long-term conditions with prospect of recovery- Long-term, degenerative conditions

• Independent living and empowerment can be regarded as rights through which many achieve a wider purpose (e.g. community involvement not just “keeping people in their own homes”).

A system for Wellbeing (3)

• Care as relational not just transactional- This Prime Minister and the last one reached the same conclusion...

• Care as a verb not just a noun• Care as an expression of values and ethics not

just a manual of regulations

Generic or specific?• Good generic approaches like person-centred

planning apply to all long-term conditions• Generic advocacy networks can engage with

LTC specialists to adapt their support• But social care needs to adapt to some of the

common features of specific conditions: e.g. - risk to personal safety (Alzheimers) - unpredictable medication needs (Parkinsons)- undiagnosed depression (Stroke)

Money for change (1)• Evaluations look at overall costs/savings as well

as benefits in psychological wellbeing, capability, satisfaction and feeling in control of daily life.

• Clear savings (£) can be found in elements of a programme. Total net savings are often small but quality of life benefits significantly higher: people stay well for longer.

• Costs and benefits need to be tracked for longer.

Type of support

Evaluation findings

Re-ablement Re-ablement led to a 60% decrease in cost of care services used over 12 months compared with conventional home care users. These lower costs were offset by the higher cost of the re-ablement itself, so savings were marginal. Quality of life measures were higher than in the control group.

Self-assessment

Self-assessment pilot for older people with low-level needs: this approach was 70% cheaper than a care manager assessment, while satisfaction levels and the cost of services used were similar.

Individual Budgets

IBs found to be most effective for psychological well-being and social care outcomes for mental health service users, then for younger people with physical disabilities and least so for older people. Overall costs are only slightly lower than for the comparison (non-IB) group, but feeling in control of daily life was significantly higher.

Other Examples

• Dementia family care coordinator: intensive community-based support (Finland) delayed early admission to residential care but same rate after two years as control group.

• ‘Safe at Home’ telecare (two English counties): reduced stress on carers, helping 60% of people with dementia to remain at home after 2 years versus 25% in control group.

Money for change (2)• Beware tighter competition for less money

between: levels of need (low-moderate vs. acute); condition types; and age groups: “It’s going to get rough out there”

• Bridging finance for alternatives: make it easier to get ‘step-up’ social care and medical support in the community (e.g. hydration) than to get a hospital bed.

• Broaden the lens to consider the full set of resources (£ and people)

People for change

• People with LTC, unpaid carers and their wider support networks (peers, befrienders)

• Key worker examples from different conditions (e.g. specialist advisers, coordinators and community nurses)

• Social care/NHS workforce and Personal Assistants: ethics, values and technical skills

• Community stake in social care (e.g. Japanese care currency)

Governance for change• Too much in the box marked ‘localism’ (e.g.

portability of care packages?)• Contrast in accountability and scrutiny between

NHS and local government: help and hassle to improve quality of care?

• Change Fund: tight focus on local match with national strategy, policy goals, what works and changes achieved

• Inequalities or just variations (assessment, support, charging): how much is too much?

Improving the improvement cycle

• Reflective practice on the frontline• To complement inspection and regulation• Getting to unheard voices• Breaching the ‘gratitude barrier’• Advocates and volunteer befrienders• Whistle-blowers• Using the complaints system pro-actively

Collaboration across LTC• Related groups of LTC can collaborate: e.g.

communication impairment across conditions is poorly understood by social care and falls between neurology, geriatrics, psychiatry.

• Learning from each other, e.g. post-diagnosis approaches to maintaining natural support networks, key workers/brokers

• Making common cause on the right issue (e.g. UK Caring Choices alliance)