Transcript Learning Disability Awareness

Lesley Eccott Community Learning Disability Nurse
8 April 2016
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Definitions & Statistics
Health Issues / Inequalities
Communication Issues
Mental Capacity Act (2005, 2009)
Consent Issues
Steps to consider for admissions related to
the learning disabled population
Discharge Planning
Outpatients
Lesley Eccott
8 April 2016
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A state of arrested or incomplete
development of the mind
Significant impairment of intellectual
functioning
Significant impairment of adaptive / social
functioning
These impairments / difficulties are present from childhood,
not acquired as a result of accident or following onset of an
adult illness.
WHO 1992 (World Health Organisation)
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8 April 2016
WHO (1992) ICD 10 (International
Classification of Disease) ¹Defined LD as:
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Mild – IQ 50-70
Effective communication / literacy skills, independent in
self care, maintain relationships / job
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Moderate – IQ 35-49
Slow comprehension, supervision to self care
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Severe – IQ 20-34
Marked cognitive impairment, damage to the CNS,
limited communication, inability to self care
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Profound – IQ less than 20
Severe cognitive delay, immobility / restricted mobility,
incontinence, requiring full support
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8 April 2016
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Approximately 210,000 people have
severe/profound Learning Disabilities in
England
1.2 million people have mild/moderate
learning disabilities in England
Valuing People (2001)
Local Figures based on the Community Nurse LD database
Adults = 620 approx
Children = 131 approx
This doesn't include all people that are active cases for the LA &
some that maybe known to GPs and not our service
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Evidence shows that people with learning
disabilities:
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Increased mortality than non-disabled population
Often have disease that goes undiagnosed
Raised prevalence rates of (Psychiatric illness,
Epilepsy, Obesity, Sensory impairments,
Gastrointestinal disorders, Cancers, Cardiovascular
disease, Respiratory disease and dementia)
Mencap (2007) , Hollins et al (1998) ,
Michael J (2008)¹¹
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As a result of these health issues people with
Learning Disability have an increased risk of:
 Preventable deaths are 4 x higher than the
general population
 58 x more likely to die before the age of 50
 3x more likely to die from respiratory disease
(46% vs 15-17% of the general population)
 Women are less likely to access screening
Breast 43% vs 57%
Cervical 19% vs 77%
 Approx 80% do not take enough exercise
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8 April 2016
Organisational Barriers
 Time constraints within
appointments
 Accessible information
 Consent issues
 Inter-professional
collaboration
 Inequalities in access
to health promotion and
screening services
 Inadequate screening
Client Issues
 Communication
Difficulties
 Inability to explain
symptom profiles
 Fear of medical
intervention / non
compliance
 Inability to understand
risks / benefits of
treatment /
investigation
DoH (2001)³, Baxter & Kerr (2002)4, Disability Rights Commission (2006)5
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Lack of health history (frequent move of
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Factors associated with the Learning Disability:
residence, lack of
documentation, inability to articulate accurate symptom profiles)
◦ Cognition
◦ Expression of illness
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Response to pain
Judgmental remarks/negative assumptions
• “Has always hit his head” (dental decay, impacted ears)
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Nature of the information available. Often you are
relying on second or third hand accounts. Often
accounts may vary from one carer to another
This leads to conflict of ideas and opinion
Lesley Eccott, CLDN
08/04/2016
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How to overcome communication barriers:
Proactively look at the
organisational barriers
(time apt, menus,
signage, pre-visits to
ward area, level 1:1
support)
Provide alternative
methods of
communication
Assess the
Individual’s ability
to communicate
Make reasonable
adjustments to custom
practices (paraphrasing,
providing explanation in
various formats, apt times)
Multidisciplinary working,
ask carer for communication
passport, request pic symbol
books if used. Identify a key
worker from home and ward
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Points to Remember - people with Learning
Disabilities may have difficulty expressing their
needs, such as :
 hunger
 thirst
 pain
 distress
 toilet and washing requirements and basic
care needs
staff should anticipate these needs, involve the carer / guardian
assess non verbal signals and meet health need
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Provides a legal framework to protect vulnerable
people who lack capacity to make decisions
It helps people to take part in the decision
making process (Mental Capacity Act, Code of
Practice 2007)
Under the Act it is now a criminal offence to
neglect the needs of people who lack capacity.
This could lead to imprisonment if medical or
physical needs are ignored for example: failing to
provide healthcare, withholding medications,
food or drink)
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The five principles are: 1. A presumption of capacity
(every adult has the right to
make his or her own decisions and must be assumed to have capacity to do
so unless it is proved otherwise)
2. The
right for individuals to be supported to
make their own decisions (people must be given all
appropriate help before anyone concludes that they cannot make their own
decisions)
3. Right
to make what appears to be seen as
eccentric or unwise decisions
4. Best interest (anything done for or on behalf of people without
capacity must be in their best interest)
5. Least
restrictive of their basic rights and
freedoms (anything done for or on behalf of people without capacity
must be in their best interest and be least restrictive)
The Mental Capacity Act (2005)
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Seek / assess whether the individual has the capacity to consent
to treatment
Record this in accordance with the Mental Capacity Act
If unable to consent, there needs to be clear evidence recorded
as to what has been done by the Hospital, Family, Carers, MDT to
help the individual understand what is required and therefore
give informed consent
If it is felt that having done this the individual is unable to give
consent then a best interest decision is made
Best Interest decisions need to be formally recorded in a meeting
with relevant people (IMCA where there's no family involvement,
Family, GP opinion, LA, CLDN)
The Decision Maker defaults to the person carrying out the
procedure
Mental Health Act 1983 (Part 1V Treatment )
Reference guide to consent for examination DoH 2001
http://valuingpeople.gov.uk/dynamic/valuingpeople118.jsp
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Host pre-admission meeting for planned
admissions (See checklist handout)
Provide picture of the ward area, proposed
treatment, may reduce anxiety and promote
understanding and may increase capacity
Use assessment information provided to make
nursing care appropriate to need
Ensure the ward is informed and prepared prior
to the admission
Make introductions to the patient carer and
wherever possible have a named nurse for the
duration of the admission
Explain the process
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Complete risk / dependency and support
assessments (agree if additional support is
required for the individual)
Agree the attendance of the support worker /
the person who knows the individual the best
to attend the ward round and provide vital
feedback on how they feel the individual is
Request copies of Care Plans / Health Action
Plans / Communication Passports
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Continually explain the procedures,
medication, changes in condition / treatment
Check the level of understanding from the
patient and carer perspective (capacity /
consent)
Document clearly the responses
Include individual, family / carer, Care
Manager, Community Learning Disability
Nurse as appropriate in the decision making
process
Reassess the need for 1:1 support / increased
support needs and negotiate this with the
ward manager
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Assess the clinical and individual needs for a
single cubicle or ward bay
Some people with a Learning Disability will be
more comfortable being cared for alongside
other people
Others may feel isolated and frightened in a
single cubicle
Whereas others with complex needs or
challenging behaviour will benefit from the
quieter environment of a cubicle
Make sure that the environment is physically
accessible and safe
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8 April 2016
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As appropriate request a discharge planning
meeting
Ask the LA to carry out an assessment of
need if there has been a change in care needs
Arrange OT assessment and visits home with
OT as required
Inform all of the community MDT involved
with the individual of the imminent discharge
Provide copy of the discharge report to the
individual, support worker, community MDT
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8 April 2016
Some people with a Learning Disability may find these busy
areas difficult and may become anxious
Consider:  Where appropriate offer the first clinic appointment
 Some may require a double clinic time slot to support their
consultation or at their pre-assessment appointment in
support of their understanding and consent
 Allow the individual time to explain themselves
 Check the level of understanding
 Avoid using medical jargon and consider using alternative
words and explanations during their consultation
 Try and perform all the necessary tests / investigations on
the same day
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8 April 2016
GPs
 Completing annual health checks
Pre-assessment
 Offer double apt as required
 Joint work with CLDN team as required
 Complete all tests at one apt
 Assess need (consent, capacity, support required during hospital
stay)
Audiology
 Hold a screening clinic for people with LD
Community LD Team
 Liaison with primary care and acute trust as required
 Health screening / assessment
 Offer support in the process of capacity and consent issues as
required
 Discharge planning as appropriate
Lesley Eccott
8 April 2016
Lesley Eccott
8 April 2016
DVD presentation
Lesley Eccott
8 April 2016
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Valuing People support team www.vpst.org.uk
Mencap www.mencap.org.uk
National Access to Acute A2A www.nnldn.org/a2a
Working together
http://www.hft.org.uk/p/4/121/working_together.html
Guidance and leaflets on consent to treatment for persons
with learning disabilities are available at www.dh.gov.uk and
www.dhsspsni.gov.uk
Royal College of Nursing (2006) Meeting the health needs of
people with learning disabilities: Guidance for nursing staff.
RCN
The Clear Communication People Ltd. The Hospital
Communication Book, version 2. Available from:
www.communicationpeople.co.uk
Healthcare for All Sir Jonathan Michael - July 2008
http://www.library.nhs.uk/learningdisabilities
Lesley Eccott
8 April 2016