kbif talk 15 6 2016 latest
TRANSCRIPT
How can we evidence the hidden
disability of brain injury in these
straightened times?
Dr Melanie George
Principal Clinical Neuropsychologist
East Kent Neuro-rehabilitaiton Unit
(EKNRU)
Overview of talk
• How can community teams and third sector
organizations capture their work for
commissioners?
• Current policy contexts which may help….
Definition of rehabilitation
“The use of all means aimed at reducing the
impact of disabling and handicapping conditions
and at enabling people with disabilities to achieve
optimal social integration”
World Health Organisation, 2001.
Aims and outcomes of
rehabilitation: what should we be
focussing on?
According to the ‘White Book on Physical and Rehabilitation
Medicine in Europe’ (2007)*, the two fundamental outcomes of
rehabilitation that should be demonstrated are:
1. The person’s well-being.
2. Their social and vocational participation.
* Journal of Rehabilitation Medicine 2007; 39: 1–48
However,
• Return to work for many is unrealistic. Therefore,
the cost-effectiveness of rehabilitation has to be
considered..
….. ‘in the broadest terms, beyond return to
work, with outcomes measured across a
range of socially meaningful domains’.
Worthington et al. (2009)
Cost savings
• Benefits of brain injury rehabilitation are reflected in
changes to accommodation (less restrictive), reduced
levels of care (less dependent) and improvements in
functional ability, productive occupation and
performance of social roles. Worthington et al. (2009)
It’s vital because…
• Untreated effects of brain injury may be
seen in physical, social and
emotional domains.
• Without rehabilitation, the need for
ongoing care, support or access to
crisis management increases.
• In some cases, problems can culminate
in offending behaviour.
UKABIF Manifesto for Acquired Brain Injury
But it’s complex…
Barriers to rehabilitation:
most of them are hidden
The organic brain damage is often
hidden
• ‘White matter disruption is an important determinant of
cognitive impairment after brain injury but conventional
neuroimaging underestimates its extent’ (Kinnunen
et al., 2011). Diffusion Tensor Imaging is more accurate
but not yet widely available.
Invisible factors that are
associated with poor outcomes
• Mood disorders; affecting around 42% of
people following a TBI (Jorge et al., 1993).
• Pre-injury psychiatric conditions and other life
stressors (Ponsford et al., 2000; Wagner et al.,
2002).
Invisible factors that are associated
with poor outcomes
• Poor insight (Manchester & Wood,
2001).
• Behavioural and social
disturbance; noted to have
“significant and long-term
consequences for relatives and on
the family as a whole” (Schonberger,
2010, p. 826).
• Executive deficits (McCrea, 2008).
Executive functioning: a reminder
• An umbrella term that includes the skills required for
independent living (such as planning and organisation).
• Problems in this area might are also often expressed as
behavioural and emotional disturbances, including an
impaired capacity for self-inhibition and self-
monitoring in social situations (Boelen, Spikman &
Fasotti, 2011).
• ‘Psychosocial incapacitation can result
from executive deficits’ (Lezak, 1982).
A reminder…
• Executive functions are required for novel, everyday and
complex activities (i.e. household management, managing
finances, work). They underpin our ability to respond to
continually changing demands of work, home and
community (Edwards et al., 2006).
• They are not at play during routine/ procedural activities.
Wolf et al. (2015) point out that there is a disproportionate
focus on these types of tasks during the acute ax phase.
So, what should community services be
focussing upon?
What should we be focussing upon?
• To return to a key point: ‘Cognitive, behavioural
and personality deficits are usually more disabling
than the residual physical deficits’ (Khan et al.,
2006).
Social roles/ integration
• The primary outcome:
resumption of social roles;
i.e. ‘Engaging in the normal
human activities that give
value to life’ (Herbert, 2000).
This means…
Supporting people to fulfil their
need for social interaction
We are social animals and are programmed
to cooperate in groups
We are social animals
• The safety and advancement of our early ancestors
depended upon them forming social groups which
were bound together by a collective sense of
obligation to one another.
• Although our environments have changed and have
become more sophisticated, our brains have not…..
‘Human beings are social animals. We were
social before we were human’ (Peter Singer)
• Brain scans show that we remain hard-wired to
focus upon other people (New et al., 2007).
The inextricable link between our
relationships with others and mental health
• Participation in social activities (Almborg et al.
2010) and maintenance of group membership in
particular (Haslam et al. 2008) is predictive of
ratings of wellbeing and quality of life for
individuals following acquired brain injury.
• It can also help ward off depression (Lewin,
Jobges & Werheid, 2013).
Haslam’s (2008) study
• A survey study of patients recovering from stroke (N
= 53) examined the extent to which belonging to
multiple groups prior to stroke and the
maintenance of those group memberships,
predicted well-being after stroke.
• Results of correlation analysis showed that life
satisfaction was associated both with multiple group
memberships prior to stroke and with the
maintenance of group memberships.
Haslam’s (2008) study
• Furthermore, it was found that cognitive failures
compromised well-being in part because they made
it hard for individuals to maintain group
memberships post-stroke.
This may, at least in part, explain why…
• The greatest economic impact of brain injury
arises from enduring disturbances of mood and
behaviour.
This is everyone’s business
• Not just the domain of neuropsychologists..
We have to pull together because the
problem is so commonplace
• Even mild brain injury can be associated with
persisting neurobehavioural difficulties.
Specialist community services –you
are key in this
• These problems may be missed in inpatient
settings..
Barriers: hospital settings can mask
problems
• Inpatient settings are highly structured with a great
deal of implicit and explicit support. There is also
freedom from the unpredictability of normal life
and access to specialist equipment.
• There are limited behavioural demands on patients
(Worthington, 2012).
Implications for individuals and their families
• Patients’ need for social activity is often neglected
at discharge planning (Atwal, 2002).
• The change in Social Services’ criteria (only for
personal care) does not help…
Rethinking outcomes
Measures should address the
‘biopsychosocial model’
The biopsychosocial model
How are we currently measuring ‘progress’?
• The problem with many assessments of outcome
following ABI is that they have been designed for use in
inpatients settings- and therefore focus upon
impairments (such as the Barthel Mobility Index).
Rather than the extent to which people use abilities
in daily life.
• Most people with ABI who succeed in living in their own
homes- score at the high end (known as ‘ceiling effects’-
i.e. restricted ability to detect further improvement).
Are specialist community teams measuring
these domains?
• For discussion here..
• In light of the fact that social support/
relationships with others underpins
wellbeing, are specialist teams showcasing
their expertise sufficiently?
• Are measures that capture quality of life, mood
and social functioning being used?
If we can’t capture the way in which we
address these areas, how can we expect
(non-specialist) commissioners to
understand the value of our work?
• Community teams should not underestimate
their expertise in supporting people to access
opportunities for social interaction/ support post
ABI.
If we can’t capture the way in which we
address these areas, how can we expect
(non-specialist) commissioners to
understand the value of our work?
• Moreover, we should not underestimate the role
that community services are playing in
preventing family breakdown (and ergo, more
expensive placements) mental health
deterioration (and use of expensive mental
health services) and suicides (huge ripple
effects- affecting the mental health of the entire
family).
• We just need to prove it.
Final point
Does current policy help or hinder us?
NHS England commissioning guidance for
Rehabilitation March 2016
Key recommendations:
• Reduce the costs associated with mental health
conditions.
• Provide integrated care for mental and physical
health (potential to reduce costs).
Royal College of Physicians working party
report; ‘Medical Rehabilitation in 2011 and
beyond’
• ‘The World Health Organization (WHO) International
Classification of Functioning, Disability and Health
(ICF) recognises the role of the environment in both
producing and reducing disability, thus highlighting the
potential for social attitudes, behaviours and policies to
enhance participation’ (vii).
Kings Fund ‘Bringing together physical and
mental health’ March 2016
• Evidence: ‘Peer support groups, online networks
and other means through which patients can offer
support to people in a similar situation to themselves
were consistently emphasised as an indispensable
way of bridging the gap between mental and
physical health’ (p.18).
• Peer support should be a routine part of clinical
practice (p. 18).
The Five Year Forward View (October 2015)
• The Five Year Forward View document (NHS England,
2014a) which outlines the future for the NHS,
emphasises that LTCs are now a central task of
healthcare and that caring for these needs requires a
partnership with patients over the longer term.
• This will require a shift from ‘paternalistic and on-
demand models of care’ (Ahmad et al., 2014, p.5), to an
approach that is focussed upon prevention,
empowerment and proactive management.
The Five Year Forward View for Mental
Health (Feb 2016)
• Mental health problems are
widespread, at times disabling, yet
often hidden.
• “The NHS needs a far more proactive
and preventative approach to reduce
the long term impact for people
experiencing mental health problems
and for their families, and to reduce
costs for the NHS and emergency
services” (p4).
The financial imperative
• Mental health problems represent the largest single
cause of disability in the UK. The cost to the
economy is estimated at £105 billion a year –
roughly the cost of the entire NHS. (p.4)
• People with long term physical illnesses suffer more
complications if they also develop mental health
problems, increasing the cost of care by an average
of 45 per cent.
• Conversely, the presence of poor mental health can
drive a 50 per cent increase in costs in physical
care.
The moral imperative
• Suicide is rising, after many
years of decline.
• There is a major drive to
reduce suicide by 10 per cent
by 2020/21.
Social approaches are gaining credibility
• Befriending schemes found to be more effective than
CBT for ‘paranoid’ service users (Doug Turkingdon) but
political ramifications. http://www.asylumonline.net/sample-
articles/yes-minister-but/
• ‘Open Dialogue’ is coming to the UK– a psycho-social
approach that involves working with the whole family or
network of a person experiencing a mental health crisis,
rather than just the individual themselves.
• “You’re not there to identify deficits, you’re looking for the
strengths and assets within this person and their
network that are going to help them recover.”
Final points and any questions?
• Kent is an ‘Integration Pioneer.’
• We have a ‘Vanguard’ site. One aim of this is to
address compartmentalisation…
• Please speak to me if you are interested in
particular outcome measures.
