Transcript The Mental Capacity Act and People with Learning Disabilities

Palliative Care and People with
Learning Disabilities
Linda S McEnhill
Coordinator NNPCPLD and Macmillan
Network Information and Support
Service
What Is Learning Disability?
Department of Health
‘A
reduced ability to understand new or
complex information (impaired intelligence)
and reduced ability to cope independently
( impaired social functioning) which began
before adulthood and which has a lasting
effect on development.’
Indicators of Learning Disability: CLDT
West Sussex
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History of being excluded/suspended from
mainstream school
Case notes which refer to special school history
Previous formal assessment of level of functioning
( psychology report)
Clinical notes from various areas which present a
picture of difficulties in a number of areas of
adaptive behaviour- not explained by an
alternative label e.g. mental health
Reading and maths skills up to grades 3-6 but
rarely beyond
Unable to acquire complex practical and
vocational skills
Other family members diagnosed with ld
None LD Indicators: CLDT West
Sussex
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School exam results higher than expected,
attended mainstream education without education
support
Employment history showing person coping
without expected levels of support
Suggestion of onset of problems post 18
Variable amount of support needed
Holds a driving licence/drives a car
Completes complex purchases without help
Age approp dev until head injury or accident
Age approp dev until chronic mental health
problems
What’s the Point and What’s the
Difference?
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Because of improved paediatric healthcare there
are more people with LD but often with more
severe physical disabilities (+1% per yr).
PWLD have much poorer physical health, but
are living longer, and are consequently likely to
experience conditions which require palliation.
May have elderly family/carers who require pc
(1/3 0f pwsld live with carers 70+ yrs) and will
require psycho-social support. 18hrs:20 mins
Long stay hospitals which previously filled the
EOLC gap no longer exist and therefore these
needs will need to be met in the community.
The National Network for
Palliative Care of People with
Learning Disabilities
Why a Network?
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To overcome individual practitioner
isolation
To link and replicate good practice
To collate and record instances of poor
practice
To more effectively influence practice and
policy in both palliative care and learning
disability services
What It Does
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Links individuals into regional groups
for regular meetings to provide
information and support and a forum
for collaboration
Provides 2 national study days each
year and 2 newsletters
Advises on resources and
developing projects ( to telephone
or email enquirers)
Macmillan Network Information and
Support Service
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Funded by MCRF for 3 years
To map, collate and design information
nationally about resources ( literature, services,
training, personnel). Yr 2 website?
Enhance the email and telephone support
service
Raise awareness of the issues re pal care & ld
and educate and train to meet these
Service user involvement
Setting the context: Healthcare of PWLD
Generally
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Higher healthcare needs but less access to healthcare
services.
DRC reports that pwld are 4x more likely to die of a
treatable illness
BBC News Site reports a recent research study which
found that pwld are 58x more likely to die before age
50yrs ( Mencap ‘Death by indifference’ 2007)
Likely, on average, to have 5 undiagnosed conditions at
any given time esp. uti’s, sight, and hearing
Higher levels of mental ill health ( 40-60% dual diagnosis
3x schizophrenia, 4x dementia)
20x epilepsy
3x respiratory deaths of ordinary population
Disease Profile
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Main causes of death = cardiac and respiratory
conditions and dementias
Information on death = poor
When cancer diagnosis then often late due to:
a) significantly lower access to screening
b) issues related to care setting
c) ‘over attribution’ of learning disability
especially by mainstream staff
d) subjective quality of life decision making
Cancer & People With Learning
Disabilities
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Recent DOH study suggests:
•Lower incidence of cancer (13.6%:26%)*16%
•Lower incidence of bronchus, prostate
and breast cancer
•Significantly higher incidence of gastro-intestinal
cancer ( 58% cancer deaths 25% gen. population)
H Pylori link- also lymphoma
BILD 2001
Cancer & People With Downs
Syndrome
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Women with downs syndrome would
appear to be less vulnerable to breast
cancer (? Genetic protection from extra
chromosome?)
People with downs syndrome have a
greatly increased risk of childhood
leukaemia ( 10-30 times more likely).
Dementia
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People with ld are 4x more likely to get
dementia
Downs syndrome population particular issues
including premature ageing, 6 times as likely to
die as ‘ordinary’ population
Increased mortality: 80% will now live in
excess of 40yrs but 50% of these will have
Downs related dementia-( includes epilepsy,
sensory problems and muscle spasms)
People with LD are ‘baby boomers’ too!
That means!
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A large ‘bulge’ of people with Down’s syndrome
who are beginning to develop dementia and will
continue to do so for decades
A group of women who are moving towards
menopause and a consequent greater need to
access screening services
People moving towards traditional palliative
care age group
Last generations of those from long stay
hospitals
Now is the time to get ready!
Challenges for Practice
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Consent
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Treatment
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Symptom control
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Placement issues
Challenges for Practice
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Consent
Whose decision is it anyway?
Mental Capacity Act
How do we ensure ‘informed’ consent?
Hot Issues for Palliative Care: Consent
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Whilst the MCA makes the distinction
between competent decisions and
competent adults clear many pwld
have never been ‘considered’ competent
in practice. Therefore the fact that there
is a legally binding process to be
followed could be a benefit for many
pwld – making life ‘safer’ for them than
it is for them currently.
But will practitioners be skilled enough to
enable pwld to demonstrate their
competence?
Hot issues for palliative care:
assessment of capacity
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Many tools with which we assess ‘clarity’
(therefore likely to be used in decisions
about capacity) don’t work for people with
learning disabilities e.g. MMSE
? On what basis will you assess capacity
in a person with a learning disability
? How will you be sure that you are
assessing ‘lack of capacity’ as opposed to
lack of the requisite communication skills
? Do you have ‘best interest’ processes
Hot issues for palliative care: Consent:
Are we clear about what constitutes ‘best
interests’ for PWLD?
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Greater difficulties in the acute
setting due to shortage of time and
less highly trained staff
59 yr old woman with a primary
breast cancer refused surgery on the
basis that she was ‘scared of
operations’
But later asked ‘This lump in my
breast is growing it wont kill me
will it?’
Challenges for Practice
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Treatment- ‘equity’ of treatment hindered
by.
•Assumptions about lifestyle.
•Assumptions about ability to
withstand treatment.
•Subjective ‘quality of life decisions’.
( Influence of eugenics).
•Parents concern about quality of care
when they can no longer physically
care.
Caring for the Carers
Majority of carers elderly and have their
own health needs (PMLD 18 hrs:20mins.)
Challenges for Practice
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Symptom control
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‘No sense, no pain’
•Patient may not tell you but may show you
•Therefore importance of base
line assessments. ( DisDAT)
DisDAT
See Journal of Intellectual Disability Research,
2006
‘Understanding Distress in people with
severe communication difficulties: piloting
and assessing DisDAT’
Regnard C et al
 Most recent version on Mencap website
www.mencap.org.uk
 See e-learning section of Help the Hospices
Web site www.helpthehospices.org.uk
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Challenges for Practice
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Communication
•Does the person use verbal language?
•Does the person understand verbal
language?
•Is the person a ‘ concrete’ or ‘abstract ‘
thinker?
‘Its very difficult having sickness &
diarrhoea together- because you don’t
know which one to do first!
The doctors call this a ‘side effect’ but
[it doesn’t just affect your sides] …it
affects your whole body!’
Spoonface Steinberg (BBC)
Challenges for Practice
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Placement Issues:
Registration Issues ( not unsurpassable
but difficult for grass roots staff)
Lack of knowledge of resources & rights (
GP is key).
Conflicting demands of other service users
Lack of confidence of LD staff in
challenging primary and secondary
providers of palliative care
Picking up the pieces: nursing homes
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Very often people with ld are unable to
stay in their own ‘homes’ and are
admitted to nursing homes at the end of
their lives; even when they are relatively
young
What needs to be adapted in terms of
practice and culture for nursing homes to
effectively meet EOLC needs of people
with LD? What partnerships need to be
developed?
What can you do?
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Join with other practitioners in local
and national groups
Make links with local hospices/
community palliative care teams to
develop policy, study days, link
workers
Work with service users proactively
on EOLC planning
Kathleen Ann Richards from
‘Caring For Kathleen’ By
Margaret Fray ( BILD)
The Palliative Care of People with Learning
Disabilities: 2 Things to Remember
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‘Statistics are ‘people with the tears
removed!’
‘The way that we practice
healthcare is the means by which
we demonstrate the value we place
on people’s lives.’ (J. Brookes 2000
How to Find Out More
Contact: Linda McEnhill
Chair, NNPCPLD & MNISS
PO Box 522, Cambridge CB1 0BL
Phone 01223 573 173
Email: [email protected]
Or at St. Christopher’s Hospice
0208 768 4657
Email: [email protected]