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NHS TAYSIDE
CARING FOR PEOPLE WITH
LEARNING DISABILITIES
RESOURCE PACK
Author Kevin Hurst
Practice Development Nurse
Acute Services Division, Jan 2005
Review Date
Contents
1. Background
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What is a Learning Disability
How common are Learning Disabilities
Health needs of people with Learning Disabilities
What is challenging behaviour
2. Communication
 Methods of communication
 Communication with carers
3. Admission to Hospital
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Pre Admission
Admission via A&E
Admission to Ward
Going to Theatre
Discharge
Out Patients
Learning Disability Assessment & Treatment Plan
Nutritional Assessment & Treatment Plan
Disability Distress Assessment Tool (DisDAT)
4. Consent
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Legislation
5. Advocacy
6. Pharmacy
7. Local Services, Resources/Contacts
8. Further Information Sources
9. References
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1. Background
What is a Learning Disability?
If someone has a learning disability it means that they may not learn things as quickly
as other people and they may need more help and support to learn. Learning disability
is not an illness. It is a permanent condition, but with the right kind of help many
people can acquire practical and social skills even if this may take them longer than
usual.
Learning disability is nearly always present from birth, though this is sometimes not
recognised until children fail to reach milestones in their development such as sitting
up or beginning to talk.
Like the rest of the population, people with learning disabilities have very diverse
personalities and characteristics. People’s backgrounds & family circumstances will
vary and these, together with the nature and degree of disability, will help to
determine what it means for a particular person to have a learning disability.
The nature of people’s disabilities varies widely and will affect the kind of support
they require. Someone with a learning disability finds it more difficult to understand
new or complicated information. They may also find it harder than other people to
learn new skills. These maybe practical things like tying shoelaces or social skills
such as holding a conversation. Some people may not speak & find other ways of
communicating with those around them. Some need help with everyday things like
getting dressed. Others will live independently with much less assistance.
Foundation for People With Learning Disabilities (2004)
Causes of Learning Disabilities
Some people with a learning disability may have an identifiable cause for their
condition, but for many there is not. Causes of learning disabilities may occur;
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Pre-natally, e.g. a pregnant women may contract an infection such as German
Measles during pregnancy.
Peri-natally, eg. a baby may suffer from hypoxia during birth.
Post-natally, e.g. a childhood illness such as meningitis.
Genetic conditions, e.g. Down’s Syndrome.
There are many syndromes and conditions associated with learning disabilities, some
common ones are;
Attention Deficit Hyperactivity Disorder (ADHD)
A form of behaviour normally used to describe children who have overactive
behaviour (hyperactivity), impulse behaviour & difficulty in paying attention.
ADHD is not always associated with learning disabilities.
Angelman Syndrome
A chromosome disorder, the main signs & symptoms being jerky movements,
seizures and a happy, sociable personality.
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Autistic Spectrum Disorder (ASD)
A genetic disorder that is difficult to diagnose, symptoms include absence or
impairment of social relationships, delayed/abnormal language & imagination
& narrow, rigid, repetitive activities.
Cerebral Palsy
A very diverse and complex non-genetic condition, ranging from very mild to
profound, with no two people being affected in precisely the same way. Only
some people with cerebral palsy have learning disabilities in addition to their
physical disabilities.
Down’ Syndrome
A genetic condition caused by an extra chromosome 21.
Fragile X Syndrome
Is an inherited condition in which a defect in the X chromosome may cause a
learning disability.
Klinfelter’s Syndrome
A chromosomal defect in males in which there is an extra X chromosome.
Manifestations in Klinefelter or “XXY” males may include underdeveloped
testes, sterility & learning difficulties.
Tourette Syndrome
An inherited, neurobehavioral disorder characterised by repeated and
involuntary body movements (tics) and uncontrollable vocal sounds.
How Common are Learning Disabilities?
In Scotland, 20 people in every 1000 have a mild or moderate learning disability and
three to four people in every 1000 have a severe or profound disability. On this basis,
it is estimated that there are around 120,000 people in Scotland with learning
disabilities. Of these, about 25% are children and young people under the age of 15; a
further 25% are people with complex need who need a lot of support.
Evidence suggests an increase of 1% a year in the prevalence of learning disabilities.
This is due to improved survival rates of people with complicated medical and
physical needs, along with increased life expectancy in keeping with the general
population.
NHS Quality Improvement Scotland (NHS QIS) (2004)
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Health Needs of People With learning Disabilities
People with learning disabilities have greater health needs when compared to the
general population. They are more likely to have certain medical conditions, such as
epilepsy, particularly if they have complex and multiple disabilities or are physically
disabled. It is important to ensure that the health care needs of people with learning
disabilities are properly met, as evidence suggests that much of their health needs are
unrecognised & unmet (NHS Scotland 2004). They may find it more difficult to
describe their symptoms, particularly if verbal communication is difficult or
impossible. Some specific health problems include;
Sensory Impairments
One in three people with learning disabilities are likely to have problems with
their sight, hearing or both. Problems with sight are more common amongst
people with severe learning disabilities & people with Down’s Syndrome.
About 40% have moderate or severe hearing loss, again this is common
among people with Down’s S & Syndrome & occurs more frequently as
people grow older.
Physical Disability
At least a fifth of people with learning disabilities have some degree of
physical disability which can affect speech, mobility & life expectancy.
Epilepsy
People with learning disabilities have a much higher risk of developing
epilepsy, up to one third of people may be affected. People with epilepsy may
injure themselves during seizures & also may have associated problems such
as sleep disturbance, mood changes, & they may also self harm.
Mental Health
People with learning disabilities may be more at risk of developing mental
health problems. About 25% of the total population are likely to have mental
health difficulties at some point in their lives. This compares with an estimated
25-40% of people with learning disabilities who experience more of the risk
factors associated with mental ill health such as adverse life events and the
lack of social support.
Unrecognised/unmet & poorly managed health needs include;
 Hypertension
 Obesity
 Heart disease
 Diabetes
 Respiratory disease
 Cancer
 Chronic urinary tract infection
 Thyroid disease
 Oral & dental health
 Musculoskeletal conditions
 Gastrointestinal disorders
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What is Challenging Behaviour
Some children & adults with learning disabilities display challenging behaviour,
typically this means that they may display behaviour which may put themselves &
others at risk, or which may prevent them from using community facilities or a
normal home life. This behaviour may present in the form of aggression, self injury,
stereotypical behaviour or disruptive behaviours.
The term challenging behaviour is used to describe a range of behaviours that may
cause disruption & annoyance to others. The phrase is often seen as too much of an
all-encompassing term. The term cannot give an indication of the causes or forms of
behaviour – particularly when similar behaviours will be created for different reasons
within individuals.
The Adaptive Behaviour Scale includes the following list of behaviours:
Violent & Destructive Behaviour
Antisocial Behaviour
Rebellious Behaviour
Untrustworthy Behaviour
Social Withdrawal
Stereotyped Behaviour
Inappropriate Personal Habits
Unacceptable Verbal Habits
Self-Abusive Behaviour
Hyperactivity
Sexually Abhorrent Behaviours
Psychological Disturbance
Challenging behaviour implies that the behaviour is a challenge to the environment in
which the behaviour occurs. The term replaces ‘problem behaviour’ which place the
problem firmly with the individual. A problem is what the individual would need to
rectify him/herself, or that it mat be deliberately produced to create problems for other
people.
By using the term challenging behaviour, we are considering that behaviour may have
other causative reasons other than the individual themselves. Challenging behaviour
may involve other factors apart from the individual. These have been described as
biological e.g. Chromosomal/Genetic Disorders such as Prader Willi Syndrome,
which can manifest odd behaviour towards food/temper tantrums.
Operant factors – this is the view that challenging behaviours are leant by positive
reinforcement (presentation of rewards) or negative reinforcement (removal of
aversive stimuli).
Ecological factors – these are behaviours which are created by the interaction of the
person with the people around. Within these ecological factors, social and
psychological factors are considered. Challenging behaviour is thus seen as being
brought about when the individual is in conflict with relationships or the leading to
withdrawal of the person from the social system. It is important therefore to consider
what is around for the person displaying the challenging behaviours and consider for
example, is the person in pain, are they trying to communicate, & becoming frustrated
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because we are not understanding what their needs are? Is the person frightened by
the unfamiliarity of the environment or what is happening to them?
We have to look beyond the behaviours and try to analyse and make sense of any
underlying contributory factors.
Between 5% & 15% of people with learning disabilities have some form of
challenging behaviour such as aggression and self-injury which present significant
challenges to carers, either because the person’s own health & safety is at risk or
because they place others in jeopardy. Challenging behaviour often starts in early
childhood and may continue into adulthood.
Research into challenging behaviour suggests that:
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Boys & men are more likely to display challenging behaviour, as are people with
specific syndromes (e.g. autistic spectrum disorder), people with more severe
learning disabilities, and those who have additional disabilities (e.g. hearing
problems or communication disorders).
In most cases, the challenging behaviour occurs when a person who has little
control over their life, tries to exercise to some power. They might do this by
screaming to attract attention, or by pushing someone away that they do not want
to be with them.
Challenging behaviour may also occur because the person with a learning
disability is frustrated at his or her inability to make others understand what he or
she needs.
Challenging behaviour can also be sometimes linked to mental health problems
such as depression or to neurotransmitter abnormalities
There is extensive evidence about the relative effectiveness of different ways to help
people with challenging behaviour. The most important way is to talk to the person
themselves, to find out what is bothering them and to see if it can be put right. This
may be difficult, if the person has no speech or has other communication problems.
Methods of communication may need to be adapted.
Teaching relaxation and social skills may help people manage their anger or anxiety.
Cognitive-behavioural approaches can also be useful in treating anxiety, depression
and anger. Treating people with medication, may only be effective circumstances.
Despite this evidence, people with learning disabilities are still more likely to be given
medication even though they may not have had a confirmed diagnosis and it’s use
may be inappropriate.
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2. Communication
Communication plays a central part in everyone’s life. Most people learnt to
communicate as part of their natural development, but people with learning
disabilities often need specialist help and support in order to communicate effectively
with others. Addressing people’s communication needs is critical. If people are not
helped to find ways of communicating, they become frustrated , that may lead to
anger or withdrawal from others.
Between 50 & 90% of people with learning disabilities have some form of
communication difficulties (depending on definitions used). Four out of five people
with severe learning disabilities have no effective speech, although they will
demonstrate that they want to communicate by other means. In some cases,
communication problems are caused by other problems, such as hearing loss.
Difficulties may also be related to autistic spectrum disorders. More often, though, the
reasons for someone’s difficulties have not been properly investigated or diagnosed.
Methods of Communication
With training & support, many people with learning disabilities can learn to use
alternatives to verbal communication which suit them as individuals. These include;
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Objects of reference: e.g. showing someone a towel to indicate a bath or shower.
Signing: e.g. British Sign Language (BSL), or Makaton, which is a language using
pictographic signs & symbols, Signalong or Braille.
Pictures, photos or symbols : e.g. photo’s of the workplace, or symbols indicating
different moods.
Portfolios which use photos, drawings, other visuals as well as text, to record
information about an individual which they can share with others: e.g. places
visited, work experience, leisure activities or records of achievement.
Many people with communication difficulties or learning disabilities have a ‘My Life
Book’, Diary or Personal Passport. This document is full of useful information about
the person including, insight into personality & character, likes & dislikes, specific
safety or feeding requirements & is a method for the person to ‘tell their story’. When
patients with learning disabilities attend, or are admitted to hospital staff should ask if
the person has one of these documents, as this will promote positive interaction &
ease communication. It is essential that staff document the source of information.
Communication with Carers
It is essential that carers are involved & consulted with, regarding the patient & their
care, as they know the patient & can provide vital & key information.
 The main carer should be involved in decisions regarding care & invited to give
feedback on perceptions of standards of care.
 Treatment & care plans should be reviewed & discussed with the main carer on a
daily basis or as frequently as previously agreed.
 If there are any specific changes or developments in the patient’ s condition
during the duration of hospitalisation the main carer should be contacted as soon
as possible (with the patient’s agreement)
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3. Admission To Hospital
The responsibility for medical & nursing care provided to people with learning
disabilities in the acute hospital environment, will remain with the Acute Services
Division of NHS Tayside at all times during their inpatient stay. People with learning
disabilities have the right to the same level of medical & nursing care as that provided
to the general population. This care must be flexible & responsive, & any diagnosis or
treatment must be take into account any specific needs generated by their learning
disability.
The healthcare needs of people with learning disabilities are usually met by their GP
& the Primary Care Team, however a referral for secondary services may be required.
It is at this point of referral that a person with a learning disability needs to be
identified in order to ensure that advance planning is undertaken to address any
specific needs & where necessary to modify investigations, treatments or
appointments to meet those needs.
GP’s are encouraged to identify a person with a learning disability when they are
referred to hospital services & provide brief information about other professionals
involved in their care. Medical secretaries & A&C staff are often the first line of
contact in the referral process, wherever possible they should highlight to the
appropriate nursing & medical staff that the patient has a learning disability, so that
contact can be made & relevant information sent to the patient prior to admission.
Pre Admission
Where ever possible for elective admissions, the patient will be sent a date to attend a
pre assessment clinic/appointment with, & relevant information in the required format
will also be provided. Contact should also be made at this point with the main carer.
1. At the pre assessment appointment or prior to admission the patient should be
given the opportunity to visit the ward or dept & meet the staff. It may also be
possible for the patient to borrow the ‘Lets Be Patient Video’ to help familiarise
themselves with hospitals & what to expect.
2. The patient will be asked to bring any ‘My Life Book’ they may have, which will
assist staff to provide more individualised care during their stay.
3. During the appointment/visit staff should undertake a preliminary assessment of
the patient’s care needs in conjunction the main carer (where appropriate), &
identify any special resources or equipment that may be required in place for
admission.
4. If required, staff should contact any community based staff/organisations
involved in the patients care for further information, or the learning disabilities
service within primary care for any specialist support/advice.
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Admission to Ward
1. The main carer should be invited to attend with the patient on the day of
admission.
2. Unless clinical need is indicated, patients with learning disabilities should not
be nursed in a side room, & should be positioned where they can be easily
observed.
3. The admitting nurse should carry out a comprehensive nursing assessment of the
patient in conjunction with the patient & carer, & complete the documentation
core data set & any relevant assessment & treatment plans – including the learning
disability & nutritional assessments.
4. It is essential for staff to find out from relatives & carers what the patient was
usually like prior to admission, & if the patient is unable to communicate the
completion of the Disability Distress Assessment Tool (DisDAT), may be
indicated.
5. Wherever possible accessible information for the patient should be provided such
as the use of photographs, pictures & objects of reference. Advice or referral may
also be required from the Speech & Language Therapists.
6. It is also essential that the patient has access to the call buzzer system & that they
understand how to use it.
7. The admitting nurse should also discuss with the main carer the possibility of their
involvement in the delivery of care, & the amount of time they intend to spend
with the patient during their stay in hospital. This should not be taken for granted
or relied upon.
8. If carers & relatives choose to assist, or stay with the patient, then their welfare
should also be considered, & meals & drinks provided.
9. If carers or relatives choose not to be involved in the direct care of the patient,
then a communication network & contact points should be established &
documented.
10. Remember to ensure that the patient is included in all conversations & aspects of
their care, & that their dignity is respected at all times.
Admission to A&E
1. If the patient is admitted unaccompanied, the named/triage nurse should attempt to
identify & contact a relative or carer as soon as possible.
2. If the patient is unable provide this information, staff should either contact the
learning disability service or the police for advice.
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3. A comprehensive nursing assessment of the patient should be undertaken & the
relevant documentation completed, including DisDAT Tool if indicated (if carer is
available to provide relevant information).
4. Where the patient is to be admitted to a ward, staff should contact the receiving
ward as early as possible & provide an initial assessment of the patients care
needs.
Going to Theatre
1. Nursing staff from the ward should contact theatre staff as soon as possible in
advance of surgery, to confirm that the patient has learning disabilities & to
discuss any specific needs that this may present. Theatre staff will then
communicate this information to the recovery staff.
2. A pre-operative visit by theatre/recovery staff will be made & arranged with the
ward in advance, so that a suitable time can be arranged when the patient’s
carer/relative can attend.
3. Theatre staff should also inform the Acute pain Team that there is a patient on the
theatre list that has a learning disability, & request that a pre-op visit be made by
them to discuss pain assessment & management with the patient & their carer or
relative.
4. The nurse undertaking the pre-op visit will discuss the following issues with the
ward nursing staff, patient & main carer:
 The patient’s previous experiences of anaesthesia & surgery
 Any known behavioural patterns which may become evident when the patient
recovers from the anaesthetic
 The patient’s communication needs
 Whether the main carer wishes to accompany the patient to the anaesthetic
room &/or to be present in the recovery room shortly after the patient recovers
from the anaesthetic
5.
The main carer will be invited to accompany the patient to theatre with the ward
nurse. Where required either or both the ward nurse & carer will remain with the
patient until they are asleep.
Discharge
1. Discharge planning should be discussed & commenced with the patient & their
carer at the time of admission.
2. Many patients with learning disabilities will have complex discharge planning
needs. The complex or simple discharge plans should be completed as
appropriate.
3. There must be a multidisciplinary team approach to planning the patients
discharge, using discharge planning meetings & ensuring that hospital staff are
liasing & communicating with their community colleagues. It should also be
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remembered that the patient & their carer should be involved in all aspects of the
discharge planning.
4. On the day of discharge the main carer should be given a copy of the discharge
plan, detailing the patient’s care needs on discharge & the arrangements made for
support in the community.
5. The GP should also be notified on the day of discharge.
6. Where at all possible the boarding of patients with learning disabilities to
other wards should be avoided, to ensure a consistent environment is
maintained.
Out Patients
1. Where a patient is a regular attendee to the out patients department, the nursing
staff will liase with the main carer to discuss & identify any specific care
requirements that the patient may have during their attendance. The outcome of
this discussion may include, where appropriate, scheduling the appointment to the
first or other suitable slot on the list.
2. Where a patient is to attend for the first time they or the main carer should be
invited (through the GP) to make advanced contact with the clinic nursing staff,
to discuss details of the organisation of the appointment, this may include a
double appointment slot.
3. Following the appointment the nursing staff should ensure that the patient & their
carer have understood the information &/or instructions that have been given to
them during the consultation. Good practice would recommend the recording of
the consultation on an audio tape for the patient to replay later.
4. Where a Health Care Assistant is responsible for co-ordinating a clinic, a
Registered Nurse must see the patient before they leave the department in order to
determine any further requirements.
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Name
Assessment & Interventions for Active Problems
CHI:
Ward:
Assessment Information: 24 Learning Disability
Relevant Medical History/Underlying Condition:
This assessment should be done in addition to the comprehensive nursing assessment.
Assessment
Normal Status
Y
Current Status
N
Y
N
Does the patient have the ability
to leave the ward safely
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Does the patient have the ability
to maintain personal dignity
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Does the patient have the ability
to maintain their own personal
safety
Can the patient communicate
with staff
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Is the patient able to
communicate (verbally or
Written) to staff when they are
distressed, emotionally upset or
in pain
Does the patient have the ability
to communicate with their
normal carers
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Does the patient have the
capacity to consent to
treatment?
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Does the patient have the ability
to understand/comprehend
information
Is the patient able to participate
in social and occupational
activities
Patients behaviour
(Please indicate)
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Identify patients need for
support with preventing self
harm (deliberate/accidental)
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What are the methods of
communication used
If No commence Disability
Distress Assessment Tool (Dis
DAT)
If No liase with medical staff to
obtain an Incapacity Certificate
Violent
Y N
Destructive Y  N 
Hyperactive Y  N 
Socially Inappropriate
Y N
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Violent
Y N
Destructive Y  N 
Hyperactive Y  N 
Socially Inappropriate
Y N
Initial
Date
Learning Disability Treatment Plan
Intervention Codes:
0= No assistance required , capable of safe , independent care
1= assistance supervision required some of the time to enable independent care
2=assitance/supervison required most of the time to ensure patient’s safety
3=assistance/supervision required continuously: patient totally dependant and incapable of independent care
4= nursing support required from qualified practitioner to provide therapeutic relationship/maintain safety/provide technical
nursing care
Please indicate carers that will be involved in the patients care e.g. ward nurse, normal career, relative etc
Y
N
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Enter Code and Carer involved in patients care
Leaving Ward
Personal Dignity
Communication with Staff
Disability Distress Assessment
Tool Commenced (Dis Dat tool)
Communication with carers
Understanding and
comprehension
Social/ occupational activities
Behaviour
Self Harm
Data gathered from : Patient
Date

Other Specify
Initial
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Initial
Date
Care Plan Reviews –Learning Disability
Dates
Interventions/Outcomes
Interventions/Outcomes
Leaving ward
Personal dignity
Personal safety
Communication with
staff
Disability Distress
Assessment Tool
Commenced (Dis
Dat tool)
Communication with
carers
Understanding
comprehension
Social/occupational
activities
Behaviour
Self harm
Initial
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Interventions/Outcomes
Interventions/Outcomes
Record of Care Given
Name
CHI:
Ward:
Treatment Plan Number:
Date
Care given
E
L
N
E
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N
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N
E
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N
Initials
Date
Care given
Initials
Date
Care given
Initials
Date
Care given
Initials
Date
Care given
Initials
Date
Care given
Initials
Date
Care given
Initials
Date
Care given
Initials
Date
Care given
Initials
Date
Care given
Initials
Date
Care given
Initials
Date
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Multi-Disciplinary Notes
Time
Date
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Initial
Information required before completing DisDAT.
Background
DisDAT was developed by the Palliative care team Based at Northgate
Hospital Morpeth in conjunction with St. Oswalds Hospice Gosforth in
response to the frequently asked question: “How do we know if people with no
formal speech are in pain?”
We decided early in the development that we couldn’t single out the symptom
of pain (physical distress) from other forms of distress such as emotional,
psychological and spiritual and that once distress had been identified it would
have to be put in context and then clinical decisions would have to be made
by the team caring for the individual to decide the appropriate interventions.
Hints on Use
DisDAT can be filled in:
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By a carer who knows the client well e.g. parent key worker
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By a clinical team, as a combined effort
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In one sitting if someone has known the client for a long time and knows
their “language” well.
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Over a period of days or weeks, in order that the individuals “language”
can be learned.
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Reassessment is essential as the needs of the client or patient may
change due to improvement or deterioration.

Distress can be emotional, physical or psychological. What is a minor
issue for one person can be major to another.

If signs are recognised early then suitable interventions can be put in
place to avoid a crisis.
What to do
1. Observe the client when content and when distressed- document this on
the inside pages. Remember that anyone who cares for the patient can do
this.
2. Observe the context in which distress is occurring.
3. Use the clinical decision distress checklist on the DisDAT tool to
assess the possible cause.
4. Treat or manage the likeliest cause of the distress.
5. The monitoring sheet is a separate sheet, which may help if you want to
see how the distress changes over time.
6. The goal is a reduction the number or severity of distress signs and
behaviours.
This is NOT a scoring tool. It documents what many staff have done
instinctively for many years thus providing a record against which subtle
changes can be compared. This information can be transferred with the client
or patient to any environment.
It is meant to help you and your client or patient. It gives you more
confidence in the observation skills you already have which in turn will help
you improve the care of your client or patient.
17
Please Note
We hope that DisDAT may be of use to you and your clients/patients and are
happy for it to be used in a variety of settings however we ask if you would:





Acknowledge where DisDAT came from in any written work /
publications / research.
Do not change the format in any way
Do not call it a pain tool
If you have feed back good or bad please report it back to a member of
the team as there is ongoing research regarding its usefulness in
different settings.
Ask for help / advice if you are uncertain of how to fill it in.
Further reading
Regnard C, Matthews D, Gibson L, Clarke C, Watson B. Difficulties in
identifying distress and its causes in people with severe communication
problems. International Journal of Palliative Nursing, 2003, 9(3): 173-6.
If you require any help or further information regarding DisDAT please
contact:
Lynn Gibson 01670 394 260
mailto:[email protected]
Dorothy Matthews 01670 394 179
mailto:[email protected]
Dr. Claud Regnard 0191 285 0063 or e-mail on
[email protected]
18
v11
Disability
Distress Assessment Tool
Northgate Palliative Care Team and St. Oswald’s Hospice
Client’s name:
DoB:
Gender:
Unit/ward:
NHS No:
Your name:
Date completed:
Names of others who helped complete this form:
INFORMATION AND INSTRUCTIONS ARE ON THE BACK PAGE
Facial appearance when CONTENT
Facial appearance when DISTRESSED
Face
Face
Tongue/jaw
Tongue/jaw
Eyes
Eyes
Vocal signs when CONTENT
Vocal signs when DISTRESSED
Sounds
Sounds
Speech
Speech
Habits and mannerisms when CONTENT
Habits and mannerisms when DISTRESSED
Habits
Habits
Mannerisms
Mannerisms
Comfortable distance
Comfortable distance
Posture & observations when CONTENT
Posture & observations when DISTRESSED
Posture
Posture
Observations
Observations
Context of distress and communication/action which helps ease distress
(You can record either a specific episode, using dates, or just describe what usually causes this person to be distressed)
Date
Context of distress
Actions that can alleviate distress
19
Disability
Distress Assessment Tool
Please take some time to think about and observe your client's appearance and behaviours when they
are both content and distressed, and describe these cues in the spaces given. We have listed words
in each section to help you to describe your client or patient. You can circle the word(s) that best
describes the content and distress cues in each category and, if possible, give a fuller description in
the spaces given. Your descriptions will paint a clearer picture of your client or patient.
COMMUNICATION LEVEL *
This person is unable to show likes or dislikes
Level 0
This person is able to show that they like or don’t like something
Level 1
This person is able to show that they want more, or have had enough of something
Level 2
This person is able to ask for and anticipate their like or dislike of something
Level 3
This person is able to communicate detail, qualify, specify and/or indicate opinions
Level 4
* This is adapted from the Kidderminster Curriculum for Children and Adults with Profound Multiple Learning Difficulty (Jones, 1994, National Portage Association).
FACIAL SIGNS
Appearance
Information / instructions
Appearance when content
Ring
Passive
the word that best
describes the facial
appearance
Laugh
Grimace
Appearance when distressed
Smile
Startled
Frown
Passive
Frightened
Grimace
Laugh
Smile
Startled
Frightened
Other:
Other:
Jaw movement
Information / instructions
Movement when content
Movement when distressed
Ring
Slack
the word that best
describes the jaw
movement
Grinding
Biting
Slack
Frown
Grinding
Biting
Other:
Other:
Appearance of eyes
Information / instructions
Appearance when content
Appearance when distressed
Ring
Good eye contact
Little eye contact
Good eye contact
Little eye contact
Avoiding eye contact
Closed eyes
Avoiding eye contact
Closed eyes
the word that best
describes the
appearance
Staring
Sleepy eyes
‘Smiling’
Winking
Tears
Dilated pupils
Vacant
Other:
Staring
Sleepy eyes
‘Smiling’
Winking
Tears
Dilated pupils
Vacant
Other:
SKIN APPEARANCE
Information / instructions
Appearance when content
Ring
Normal
Pale
Sweaty
Clammy
the word that best
describes the
appearance
Appearance when distressed
Flushed
Other:
Normal
Pale
Sweaty
Clammy
Other:
20
Flushed
VOCAL SOUNDS (NB. The sounds that a person makes are not always linked to their feelings)
Information / instructions
Sounds when content
Sounds when distressed
Ring
the word that best
describes the sounds
Write down commonly used
sounds (write it as it sounds;
‘tizz’, ‘eeiow’, ‘tetetetete’):
Volume: high
medium
low
Volume: high
medium
low
Pitch:
medium
low
Pitch:
medium
low
intermittent
long
Duration:
long
high
Duration: short
……………………………….
Description of sound / vocalisation:
Cry out
Wail
Scream
laugh
………………………………
Groan / moan
………………………………
Other:
SPEECH
Information / instructions
Words when content
shout
Gurgle
high
short
intermittent
Description of sound / vocalisation:
Cry out
Wail
Scream
laugh
Groan / moan
shout
Gurgle
Other:
Words when distressed
Write down commonly used
words and phrases. If no words
are spoken, write NONE
Ring the words which best
describe the speech
HABITS & MANNERISMS
Information / instructions
Clear
Stutters
Slurred
Unclear
Clear
Muttering
Fast
Loud
Soft
Muttering
Fast
Slow
Loud
Soft
Whisper
Stutters
Slurred
Unclear
Slow
Whisper
Other:
Other:
Habits and mannerisms when content
Habits and mannerisms when distressed
Close with strangers
Close with strangers
Close only if known
Close only if known
No one allowed close
No one allowed close
Withdraws if touched
Withdraws if touched
Posture when content
Posture when distressed
Write down the habit or
mannerism. E.G. “Rocks when
sitting”
Write down any special
comforters, possessions or toys
this person prefers.
Please Ring the statement
which best describes how
comfortable this person is with
other people being physically
close by
BODY POSTURE
Information / instructions
Ring the word that best
describes how this
person sits and stands.
Normal
Jerky
Tense
Rigid
Floppy
Slumped
Restless
Still
Able to adjust position
Leans to side
BODY OBSERVATIONS
Information / instructions
Describe the pulse, breathing,
sleep, appetite and
usual eating pattern,
eg. eats very quickly, takes a
long time with main course, eats
puddings quickly, “picky”.
Poor head control
Normal
Jerky
Tense
Rigid
Floppy
Slumped
Restless
Still
Leans to side
Able to adjust position
Poor head control
Gait: Normal / Abnormal
Gait: Normal / Abnormal
Other:
Other:
Observations when content
Observations when distressed
Pulse:
Pulse:
Breathing:
Breathing:
Sleep:
Sleep:
Appetite:
Appetite
Eating pattern:
Eating pattern:
21
Information and Instructions
Whenever we communicate face-to-face we don’t Clinical decision distress checklist
just use words or writing. Our face reveals emotions Use this to help decide the cause of the distress
such as joy, contentment, fear, anger and sadness.
Our voice can provide clues through its tone and
Is the new sign or behaviour?
quality. Hands are used extensively to emphasise,
 Repeated
rapidly?
illustrate or hide our feelings. Posture shows our
Consider pleuritic pain (in time with breathing)
feelings and can indicate whether we are being
Consider colic (comes and goes every few minutes)
defensive, trusting or frightened.
Consider: repetitive movement due to boredom or
fear.
DisDAT is
Intended to help identify distress cues in people who
because of cognitive impairment or physical illness have
severely limited communication.
Designed to describe a person’s usual content cues
content, thus enabling distress cues to be identified more
clearly.
NOT a scoring tool. It documents what many staff have
done instinctively for many years thus providing a record
against which subtle changes can be compared. This
information can be transferred with the client or patient to
any environment.
Only the first step. Once distress has been identified the
usual clinical decisions have to be made by professionals.
Meant to help you and your client or patient. It gives
you more confidence in the observation skills you already
have which in turn will help you improve the care of your
client or patient.
 Associated
with
breathing?
Consider: infection, COPD, pleural effusion, tumour
WHAT TO DO
 Associated with elimination (urine or faecal)?
Consider: urinary problems (infection, retention)
Consider: GI problems (diarrhoea, constipation)
 Present in a normally comfortable position or
situation?
Consider: pains at rest, infection, nausea.
 Worsened or precipitated by
Consider: movement-related pains
 Related
to
eating?
Consider: food refusal through illness, fear or
depression
Consider: food refusal because of swallowing
problems
Consider: upper GI problems (oral hygiene, peptic
ulcer, dyspepsia) or abdominal problems.
 Related
to
a
specific
situation?
Consider: frightening or painful situations.
 Associated
with
vomiting?
Consider: causes of nausea and vomiting.
7. Observe the client when content and when
distressed- document this on the inside pages.
Anyone who cares for the patient can do this.
8. Observe the context in which distress is
occurring.
9. Use the clinical decision distress checklist on
this page to assess the possible cause.
10. Treat or manage the likeliest cause of the
distress.
11. The monitoring sheet is a separate sheet
which may help if you want to see how the
distress changes over time.
12. The goal is a reduction the number or severity of
distress signs and behaviours.
Remember
 Most information comes from the whole team in
partnership with the family.
 The assessment form need not be completed all at
once and may take a period of time.
 Reassessment is essential as the needs of the client
or patient may change due to improvement or
deterioration.
 Distress can be emotional, physical or psychological.
What is a minor issue for one person can be major to
another.
 If signs are recognised early then suitable
interventions can be put in place to avoid a crisis.
movement?
If you require any help or further information
regarding DisDAT please contact:
Lynn Gibson 01670 394 260
Dorothy Matthews 01670 394217
Dr. Claud Regnard 0191 285 0063 or e-mail on
[email protected]
Further reading
Regnard C, Matthews D, Gibson L, Clarke C, Watson B.
Difficulties in identifying distress and its causes in people with
severe communication problems. International Journal of
Palliative Nursing, 2003, 9(3): 173-6.
Distress may be hidden,
but it is never silent
22
DisDAT Monitor
Q1
Q2
Q3
Patient:_______________________ Start month:________ Year:_____
Is the sign/behaviour of distress present?
Is it moderately affecting on the day?
Is it dominating the day?
If No, write A (Absent), if Yes, go to next question
If No, write B (Brief), if Yes, go to next question
If No, write C (Caution), if Yes, write D (Dominates)
Score based on PACA. (Ellershaw J)
Patient sign or behaviour of distress: (EXAMPLE): grimaces
DATE
13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
29
30
1
2
3
4
D ominates
C aution
B rief
A bsent
Patient sign or behaviour of distress:
DATE
D ominates
C aution
B rief
A bsent
Patient sign or behaviour of distress:
D ominates
C aution
B rief
A bsent
Patient sign or behaviour of distress:
D ominates
C aution
B rief
A bsent
Patient sign or behaviour of distress:
D ominates
C aution
B rief
A bsent
Patient sign or behaviour of distress:
D ominates
C aution
B rief
A bsent
Patient sign or behaviour of distress:
D ominates
C aution
B rief
A bsent
Patient sign or behaviour of distress:
D ominates
C aution
B rief
A bsent
TOTAL number of categories (NB. The goal is a reduction the number or severity of distress signs and behaviours.)
DATE
D ominates
C aution
B rief
A bsent
23
5
6
7
DisDAT Monitor
Patient:_______________________ Start month:________ Year:_____
Document the daily frequency of each distress sign or behaviour with a 
Mark down the usual time each sign or behaviour lasts in minutes
Patient sign or behaviour of distress: (EXAMPLE): grimaces
DATE
13
14
15
16
17
18
19
20
Frequency



















10
12
6
8
5
5
2
<1
How long?
21
22
23

-
1
24
25
26
27
28
29
30
1
2
3
4
5
6
7
-
-
-
-
-
-
-
-
-
-
-
-
-

-
1
DATE
Patient sign or behaviour of distress:
Frequency
How long?
Patient sign or behaviour of distress:
Frequency
How long?
Patient sign or behaviour of distress:
Frequency
How long?
Patient sign or behaviour of distress:
Frequency
How long?
Patient sign or behaviour of distress:
Frequency
How long?
Patient sign or behaviour of distress:
Frequency
How long?
TOTAL
Total
frequency
Total
time
24
4. Consent
Careful consideration needs to be given when obtaining informed consent for any
patient. The fact that a patient has a learning disability does not alter the need to
obtained informed consent. This may cause concern when health care professionals
are unclear whether the person with the learning disability has the capacity to
understand the implications of the procedure they are being asked to consent to, &
indeed the whole notion of giving or withholding consent.
The general law on medical consent states that a person must give informed consent
to any treatment. In order to have the capacity to consent a patient must be able to:




take in the information about the purpose and nature of the treatment
understand the principle benefits, risks & alternatives of the treatment & of
refusing the treatment
make a free choice & know they have the right to refuse
retain the information long enough to make an informed decision.
Many patients with a learning disability do have the capacity to give informed consent
– it should not be assumed that they cannot. It is therefore, vital for health
professionals to recognise that in most cases consent should be sought from the a
patient themselves. It is not acceptable or legal for a parent or carer to give
consent on behalf of an adult with a learning disability. When attempting to obtain
informed consent staff involved should consider carefully the patient’s level of
understanding & comprehension – this may involve contacting people who have a
detailed knowledge of the patient. The use of language & presentation of information
should be appropriate to the patient.
Legislation
The Adults With Incapacity (S) Act 2000
No adult has the right to make legal decisions for another adult (age 16 & over),
unless that person has been legally appointed to do so. In addition the Act makes
provision for doctors to treat an incapable adult without consent. The Act defines
incapable as ‘incapable of acting or making decisions or communicating decisions or
understanding decisions or retaining the memory of decisions in relation to any
particular matter, by reason of mental disorder or of inability to communicate due to
physical disability’.
The Act contains general overarching principles:
Principle 1 Benefit – Any person intervening in the life of the incapable adult must
be satisfied that there is a benefit to the adult & that such benefit cannot be achievd
without the intervention.
Principle 2 Minimum Intervention – The intervention must be the least restrictive
option in relation to the freedom of the incapable adult.
Principle 3 Take Account of the Wishes of the Adult – The views of the incapable
must be sought, by any means possible. This is a legal requirement.
25
Principle 4 Consultation with Relevant Others – The views of the nearest relative,
the primary carer, & any person already appointed to act for the adult & any other
person who appears to be relevant must be sought.
Principle 5 Encourage the Adult to Exercise Whatever Skills She or He Has –
The adult must be encouraged to exercise whatever skills she or he has concerning
property, financial affairs or personal welfare, & to develop new such skills.
If the decision is made to treat without consent, a doctor must certify this in writing
that the person is incapable of consenting to treatment by completing an incapacity
certificate, which should be held in all wards & depts. Where a person requires a
series of treatments, a treatment plan may be attached to the certificate of incapacity.
The Mental Health (Care & Treatment) (S) Act 2003
The main points of this Act include;
 Establishment of a new Mental Health Tribunal which will combine professional,
legal & practical experience in deciding what is best for patients.
 Give new provisions to ensure that advocacy is available to all persons with a
mental disorder.
 Strengthen the Mental Welfare Commission to ensure that people with mental
illness & learning disabilities are properly protected.
 Place duties on local authorities to provide care & support services & to promote
the wellbeing social development of all persons in their area who have, or have
had, a mental disorder.
The Human Rights Act 1998
The Act applies to all public authorities & makes it unlawful for a public authority to
act or fail to act in a manner inconsistent with the rights set out in the European
Convention on Human Rights.
Disability Discrimination Act 1995
This Act introduced new measures aimed at ending the discrimination which many
disabled people face. It protects people in the area of;
 Employment
 Access to goods, facilities & services
 The management, buying or renting of land & property
 Education
26
5. Advocacy
The Government’s White Paper Valuing People (DOH 2001) states that advocacy is
an important way for people with a learning disability to have more choice & control
in their lives. Some groups including people with learning disabilities, can find it hard
for their voice to be heard & risk exclusion & disempowerment. Advocacy can help
people state their case, influence decisions which affect them, obtain better services,
& be treated more equally. It can also protect people from abuse & neglect, redress
the balance of power & them exercise their rights & entitlements.
There are several types of advocacy:
Self Advocacy
A person expresses their own needs & concerns & asserts their own rights, either
individually or collectively.
Citizen Advocacy
Is where one person helps another to put forward their views & may speak on their
behalf. The advocate identifies the other persons choices & decisions, but does not
make them. Citizen advocates are usually unpaid volunteers who are independent of
services.
Peer Advocacy
Is similar to citizen advocacy but in the context of learning disabilities, the advocate
would also have a learning disability. Peer advocates are usually supported by selfadvocacy groups, other forms of group advocacy, citizen advocates or a combination
of these.
Group Advocacy
Is where a group of people come together to campaign on issues of shared concern
that affects a large number of people. This is often undertaken by national & local
voluntary organisations.
Organisations concerned with advocacy for people with learning disabilities;
PAMIS
Springfield House, 15/16 Springfield, University of Dundee, Dundee, DD1 4JT.
Tel: 01382 345154
Email: [email protected]
Website at: www.dundee.ac.uk/pamis
An organisation in Scotland working with people with profound & multiple learning
disabilities, their families, carers & professionals who support them.
British Institute of Learning Disabilities (BILD)
Campion House, Green Street, Kidderminster, Worcestershire, DY10 1JL.
Tel: 01562 723010
Email: [email protected]
Website at: www.bild.org.uk
A charity which exists to improve the quality of life of all people with a learning
disability.
27
Citizen Advocacy Information & Training
162 Lee Valley Technopark, Ashley Rd, Tottenham Hale, London, N17 9LN.
Tel: 020 8880 4545
Email: [email protected]
Website at: www.citizenadvocacy.org.uk
CAIT is the national resource agency for citizen advocacy
Speaking Up!
162 Tenison Road, Cambridge, CB1 2DP.
Tel: 01223 566258
Email: [email protected]
Website at: www.speakingup.org
A charity supporting people with learning disabilities to control their own lives.
28
9. Local Services Resources/Contacts
In Patient services
Learning Disability Unit
Carseview Centre
Dundee
Tel: 01382 878704
SCN Gail Whyte
Craigowl Centre
Strathmartine Hospital
Dundee
Tel: 01382 831944
SCN Hazel Lawrence
Bridgefoot House
Strathmartine Hospital
Dundee
Tel: 01382 831947
SCN Alison Irons
Day Hospital Services
Hawkhill Day Hospital
Peddie Street
Dundee
Tel 01382 668300
SCN Ritchie Harper
Birch Avenue Day Hopsital
Birch Avenue
Scone
Perth
Tel: 01738 553674
SCN Sheila Marshall
Community Learning Disability Nursing
Services
Lunan Park Resource Centre
Friockheim
Angus
Tel: 01307 826940
Team Leader AM Weir
Wedderburn House
1 Edward Street
Dundee
Tel: 01382 346020
CLDN’s Ann Pert, Shellie Connor & Alison
Britton
Birch Avenue
Scone
Perth
Tel: 01738 555420
CLDN Arlene Dawson
29
Admission & assessment unit, providing
specialist assessment & treatment for people
with learning disabilities across Tayside.
Specialist treatment centre for both day &
residential clients who display extremes of
challenging/offending behaviours.
Challenging behaviour area split into 3 x 8
bedded areas, each dealing with a defined
client group.
Both services cater for individuals with
challenging behaviour & are open Mon – Fri
only.
Tayside – wide cover.
Forensic Team
Craigmill Centre
Strathmartine Hospital
Tel 01382 831975
Team Leader Kaye McGowan
30
10. FURTHER INFORMATION SOURCES
British Institute for Learning Disabilities
www.bild.org.uk
BILD is the British Institute of Learning Disabilities, a not for profit organisation with charitable status,
which exists to improve the quality of life of all people with a learning disability. BILD provides
information, publications and training and consultancy services for organisations and individuals.
Camphill Scotland
www.camphillscotland.org.uk
Camphill’s principal role is to work with people who have special needs. this work is not a “job” in the
usual sense of the word, but a way of life.
Capability Scotland
www.capability-scotland.org.uk
This is Scotland’s largest disability organisation, providing a broad range of services to adults and
children with disabilities.
Contact a Family
www.cafamily.org.uk
Contact a Family is the only UK charity providing support and advice to parents whatever the medical
condition of their child.
Down’s Syndrome Scotland
www.dsscotland.org.uk
Down’s Syndrome Scotland, formerly the Scottish Down’s Syndrome Association, is a membership
organisation which works to improve the quality of life for everyone with Down’s syndrome in
Scotland. Its membership includes individuals who have Down’s syndrome, parents, and professionals.
Enable: Scotland
www.enable.org.uk
ENABLE is the largest membership organisation in Scotland for people with learning disabilities and
family carers. It was formed in 1954 by a small group of parents because many families with a child
with learning disabilities felt alone and isolated. They wanted better services for their sons and
daughters and better support for parents.
Home Farm Trust
www.hft.org.uk/
HFT is a national charity for people with learning disabilities. It provides a range of services including
supported living, registered care homes, advocacy, supported employment, short-term breaks (respite)
and day services. It also provides a support service for carers of people with learning disabilities.
31
Key Housing
www.keyhousing.org/html/about.asp
Key was set up in 1977 by a small group of parents concerned about the lack of good quality supported
accommodation, and committed to developing alternatives to institutional care for people with learning
disabilities.
Leonard Cheshire
www.leonard-cheshire.org/
Leonard Cheshire is a leading provider of services for disabled people in the UK and operates in over
57 countries across the world.
Mencap
www.mencap.org.uk
Mencap is one of the UK’s best known learning disability charity working with people with a learning
disability and their families and carers its sister organisation in Scotland is known as Enable.
Momentum Scotland
www.momentumscotland.org
Momentum works in partnership throughout Scotland to enable and empower disabled and excluded
people to identify and achieve their goals. They support people to remain active citizens within their
own communities, through the provision of mainstream employment and personal support services.
National Electronic Library for Learning Disability
www.nelh.nhs.uk/learningdisabilities
There are a number of pages on this website that are worth reading if you are new to field of learning
disabilities.
Norah Fry Research Centre
www.bris.ac.uk/Depts/NorahFry
The Centre was established in 1988 as part of the University of Bristol’s department of Mental Health.
Its principal interests are the evaluation and development of services for people with learning
disabilities.
Rescare
http://www.rescare.com/web/index.asp
Rescare delivers services to persons with disabilities, youth with special needs and adults with barriers
to employment. The phrase Building Lives, Reaching Potential is their vision of the wide variety of
things they do for the people they help.
32
Scottish Consortium for Learning Disability
www.scld.org.uk
SCLD is made up of 13 partner organisations that have joined together with funding from the Scottish
Executive to become the Scottish Consortium for Learning Disability.
Scottish Executive (learning disabilities)
www.scotland.gov.uk/ldsr
This is the Scottish Executive web section for the National Review of Services for People with a
Learning Disability. There is a heavy emphasis on delivering person-centred services; our aim is to
develop a framework for better social and health care services for people with learning disabilities.
This review was the first in-depth analysis of services for people with learning disabilities in Scotland
for over 20 years. Statutory agencies, service users, their carers and people who deliver the services
were all involved in the review.
Scottish Society for Autism
www.autism-in-Scotland.org.uk
A provider of services for people with autistic spectrum disorder in Scotland. They deliver a range of
expertise in care, support and education for people with autism, their families and carers.
Sense Scotland
www.sensescotland.org.uk
Sense Scotland is a leader in the field of communication and innovative support services for people
who are marginalised because of challenging behaviour, health care issues and the complexity of their
support needs.
The Foundation for People with Learning Disabilities
www.learningdisabilities.org.uk
This boasts to be the biggest and most comprehensive website on learning disabilities in the UK.
Turning Point: Scotland
www.turningpointscotland.com/learndis/
Turning Point: Scotland manages several services for adults with learning disabilities. All services are
tailored around individuals. TPS learning disability services include day support services, social
enterprise projects and supported accommodation.
Values into Action
www.viauk.org/
A group that campaigns for the rights of people with learning disabilities.
33
11. References
Foundation for People with Learning Disabilities 2004. London.
www.learningdisabilities.org.uk
NHS Health Scotland 2004. Learning Disability Needs Assessment Report.
Edinburgh.
NHS Quality Improvement Scotland (NHS QIS) 2004. Quality Indicators; Learning
Disabilities. Edinburgh.
www.nhshealthquality.org
Regnard C, Mathews D, Gibson L, Clarke C & Watson B. Difficulties in identifying
distress & it’s causes in people with severe communication problems. International
Journal of Palliative Nursing, 2003, 9 (3). 173-6.
Scottish Parliament. Adults with Incapacity (Scotland) Act 2000. Edinburgh HMSO.
www.scotland-legislation.hmso.gov.uk/legislation/scotland/acts2000/20000004.htm
Scottish Parliament. Mental Health (Care & Treatment) (Scotland) Act 2003.
Edinburgh HMSO.
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