A COMING OF AGE

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.

16
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.
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
• Its 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)