Living well with long-term conditions: What next for social care? 13 September 2011

1. Living well with long-term conditions: What next for social care? 13 September 2011 Jim McCormick

2. 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”

3. 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

4. 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?

5. Perception of own health by age group (Scotland 2008)

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

7. 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

8. 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?

9. 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

10. 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?

11. 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.

12. 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”).

13. 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

14. 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)

15. 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.

17. 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.

18. 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)

19. 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)

20. 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?

21. 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

22. 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)