Patient with
Learning Disabilities
Fact pack
Please ensure all staff read this information
What is a learning disability?
How will you know a person has a learning disability
Making reasonable adjustments
Examples of reasonable adjustments
MCA and best interests
Communication
Nutrition and hydration
Managing complex behaviours
Useful links
Reasonable adjustments guidelines
Admission process
(Please sign enclosed sheet as read)
Patient with a Learning Disability Fact Pack September 2010
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Learning Disabilities Fact Pack - Please sign when you have read this pack
Ward/Dept ……………………………………………
Signature
NAME - Please print
Patient with a Learning Disability Fact Pack September 2010
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Date
Learning Disabilities Fact Pack - Please sign when you have read this pack
Ward/Dept ……………………………………………
Signature
NAME - Please print
Patient with a Learning Disability Fact Pack September 2010
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Date
What is a learning disability?
• Being less able to cope without support (social impairment)
• Being less able to understand new or complicated information (mental
impairment)
• Starting before adulthood and has long term effect on development
A learning disability is not a mental illness and does not come under Mental
Health
Some people with a learning disability also have a mental illness (this is called
a dual diagnosis)
People with Learning Disabilities have greater health
needs
They are at a greater risk of all the following:
• Respiratory disease
• Epilepsy
• Sensory Impairments
• Helicobacter Pylori Infection (bacterium in the stomach)
• Gastrointestinal disease
• Heart Disease
• Thyroid dysfunction (particularly people with Down’s Syndrome)
• Mental ill health
• Cancer; oesophageal, stomach, gall bladder & leukaemia.
How will you know if a patient has a Learning Disability?
• Documented that the patient has a learning disability (eg. in medical
notes, on reports etc)
• Requires significant assistance with activities of daily living / social
adjustment
• Difficulties identified from a range of information not explainable by a
specific condition
• Known to Learning Disability consultant or Community Learning
Disability Team
• Many people with Learning disabilities will have a relative/carer
supporting them. – discuss with relative/carer
• If unsure – contact Learning Disability Liaison Nurse Team.
Patient with a Learning Disability Fact Pack September 2010
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Making reasonable adjustments
 The Disability Discrimination Act makes it a duty for health services
(and all service providers) to make reasonable adjustments in order to;
eliminate discrimination that is unlawful under the Act.
 To promote equality of opportunity between disabled persons and
other persons
 To take steps to take account of a person’s disabilities, even where
that involves treating the disabled person more favourably than other
persons
 The duty to make reasonable adjustments applies to all of us in the
health service; the porter, hotel service staff, doctor, nurse, HCA,
phlebotomist, physio, OT, SLT, dietician, caterer, administrative staff,
managers…… YOU!
Failure to make reasonable adjustments
• When the effect of the failure is to make it impossible or 'unreasonably
difficult' for the disabled person to make use of services … and the
failure is not justified it is unlawful.
Examples of Reasonable Adjustments for people with
learning disabilities.
• Booking double appointments
• Getting patient seen quickly, avoiding queuing/waiting
• Providing a side-room
• Hi-low bed
• Providing the first appointment of the day
• Funding for a carer to stay with the patient
• Enabling a carer to support patient (for an investigation, going to theatre)
• Adapting treatment
• Providing easy read information
• Meet individual needs
Patient with a Learning Disability Fact Pack September 2010
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Consent and the Mental Capacity Act
• Have you considered consent issues?
No one can give consent on behalf of another adult.
• Have you assessed if the person has capacity to consent? Can they;
- understand what they are making a decision about
- retain & use the information in order to make a decision,
- weigh-up the benefits and risks
- communicate their decision in any way
• All consent decisions need to be clearly documented
Check the intranet A-Z Safeguarding Adults for information on the
mental capacity act.
If in doubt contact the Hospital Liaison Nurse Learning Disability.
Best interests
Where a person lacks capacity to consent all acts done or decisions made on
their behalf must be in their best interest.
Best interest decisions should include the views of the patient relatives,
carers, other professionals involved etc. & be documented
When decisions have to be made in an emergency they are the responsibility
of the decision-maker eg. doctor/consultant and relatives/carers informed.
With serious decisions if the patient has no one unpaid to consult about best
interests involve an Independent Mental Capacity Advocate (IMCA).
For more information See Mental Capacity Act page on intranet
Patient with a Learning Disability Fact Pack September 2010
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How does the person communicate?
A person with a learning disability will often have communication
difficulties.
To find out how someone communicates;
• Interact with the person
• Ask to see the traffic light hospital assessment
• Talk to family and carers; ask about their behaviour and what it means
(if they have complex behaviour)
• Look for additional information such as speech and language therapy
reports.
Additional ways of communicating
Objects of reference eg. use a cup to ask “ would you like a drink?”
Pictures / photos
Body language (what is it telling you, what is yours telling them?)
Expression
Gestures / miming
Speak slowly and clearly
Give the person time to process the information & respond.
Check understanding, if necessary repeat the information or say it in a
different way.
• Look at expressions and body language
• Sign language - makaton
• Utilise the hospital communication book.
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Assessing pain / discomfort
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Can the person describe the pain or point to where it is?
Adapt communication eg. “pain” “hurt” “ouch” “sore”
Can person use a pain scale ; 1 - 5 or sad - smiley faces
Utilise hospital communication book
If patient unable to formally communicate pain look for other indicators;
• Colour, breathing,
• Behaviour; restless, aggressive, vocal or withdrawn
• Discuss with relatives/carers how patient usually indicates pain and
document this.
Patient with a Learning Disability Fact Pack September 2010
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Nutrition and hydration
Have you got information about the patient’s nutritional needs/support;
from the patient, relatives or carers, notes, assessments etc?
Does the patient need specialised equipment to maintain
independence?
Incorporate above into care-plan as required
If a procedure such as inserting an NG tube is necessary – consider
psychological support/reassurance from carers/family
Patients who have a learning disability should have their food / fluid
intake monitored in a way that is informative, accurate and up-to-date.
The patient may need support to choose food from menu or may need
this done for them.
Managing Complex / challenging behaviour
• How does the patient usually behave - (carers, hosp traffic light
assessment, guidelines) and how is it managed?
• Has the patient shown these behaviours before: when, cause, duration,
how managed?
• Underlying health needs: ill health, pain, hot, cold, hungry, thirsty,
nausea, constipated, epilepsy etc.
• Medications – new medicines – side effects. Daily medications given on
time (mental health, epilepsy etc.)
• Environment – too noisy, quiet, over/under-stimulating, boredom (what is
home environment like)
• Complete patient risk assessment
• Communicate in a way they understand (carers, hosp assessment,
capacity).
Patient with a Learning Disability Fact Pack September 2010
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• What do they find calming.
• Slow down, go at their pace.
• Awareness of preferences eg touch.
• Procedures that hurt, cause anxiety, consider sedative, pain relief, emla
cream etc.
• Familiarise with equipment – desensitisation.
• Additional support, specialist support (inform lead nurse)
Supporting carers
• The carers role is to assist where necessary, to promote familiarity to
reduce fear and anxiety that the patient may be feeling
• The carer may also be key to communication with the patient.
• It is the responsibility of the nurse in charge to ensure that all planned
care and treatment is delivered appropriately and that……
 The carer receives a rest break
 The carer is kept informed of progress on a need to know basis
Refer to policy ‘Supporting Carers of Patients Requiring Extra Physical or
Emotional Support’ (policy number A0059)
Patient with a Learning Disability Fact Pack September 2010
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Reasonable adjustments guidelines – Outpatients / emergency department
DDA – Disability Discrimination Act 2005
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It is the duty of all public bodies to promote equal opportunity for disabled people
Eliminate unlawful discrimination
Promote positive attitudes
Encourage full participation in public life
To undertake ‘reasonable adjustments’
If known learning disability inform learning disability liaison nurse
08454 224985/53 – If out of office hours, please leave a message
How does the person communicate?
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Adapt communication style to meet individual needs.
Requires aids/support – utilise hospital communication book, objects of reference
Talk to family and carers
Ask for traffic light assessment – if patient does not have one provide one for the patient / carer to
complete. (copies held in outpatients, Emergency Department and Acute Care Units)
Provide double appointments
Capacity and consent – MCA 2005
 Can the person understand, retain, weigh up and communicate their decisions
 If capacity is lacking – best interest decisions may be made in consultation with those involved with the
person. Serious decisions will need IMCA involvement if family or unpaid carers are not involved.
 Follow trust Mental Capacity Policy
 Refer to learning disabilities liaison nurse
Managing patients anxiety / behaviours
 Consider patient safety
 Is the patient safe on a hospital trolley?
 Are there hazards close by? (medical equipment?)
 Complete trust patient specific risk assessment
 Enable additional support
 Provide a quiet area to wait in
 Reduce waiting time
 Allow the person and their carer to leave the area and return at a given time or by mobile phone contact
 Adjust future appointment times to beginning or end of clinic
 Provide double appointments
 Provide easy read information to assist understanding
 Is the agitation a result of pain / discomfort?
 Consider mild sedative for anxiety
Pain assessment
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Find out how the person express pain
Document how the person expresses pain
Talk to carers
Refer to liaison nurse / pain team for provision of pain assessment tool.
Refer to traffic light assessment
Carers
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Listen to information provided by carers
If there is a long waiting time – periodically check that the patient and carer are ok
Offer help and support as required
Keep patient and carers informed.
Refer to carer policy number A0059
Patient with a Learning Disability Fact Pack September 2010
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Reasonable Adjustments Guidance checklist for a patient with a Learning Disability
or a patient with Dementia
Please use this checklist to consider if any reasonable adjustments are needed for your patient –
Remember it is a legal requirement to make reasonable adjustments where these are indicated.
You must document in the patients Health Record if:
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no Reasonable Adjustments are required
Or
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If Reasonable Adjustments are required document these in the patients Health Record
or care plan
For the patient with a Learning Disability:
Refer all patients and at each time of presenting, to the Learning Disability Liaison Team: 08454 224985 or
08454 224953 Check - Does the patient have a Hospital Traffic Light Assessment Document - If not provide
patient/carer with this document and ask for this to be completed - (Document available on wards / Emergency
Department / Acute Care Units and Learning Disabilities Liaison Nurse)
For the patient with Dementia:
Consider referral to Mental Health Liaison Team for further advice and support: Contact number - GRH ext: 5490
- Does the patient have a ‘This is Me’ Document - - Does the patient have the ‘Living Well Hand’ handbook – if
yes view this with the patient and carer, use information to plan care
Check communication needs
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Adapt communication style to meet individual needs.
Slow down and allow more time for patient to process information
Include carers in communication
Gestures, objects of reference, pictures, hospital communication book
Increase observations to spot signs of deterioration
Is there a hospital traffic light assessment (patients with Learning Disability) If not provide patient/carer with
this document and ask for it to be completed (available on wards / Emergency Department / Acute Care Units
and Learning Disabilities Liaison Nurse)
Is there a ‘This is me’ document (dementia) If not provide patient/carer with this document and ask for it to be
completed
Capacity to Consent
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Consider is it appropriate to assess capacity? Follow Trust Mental Capacity Act Policy
Can the patient understand, retain, weigh up and communicate decisions– use Trust Assessment of Capacity
document GHNHSFT – Y0711-01-10 or Consent Form 4
If care is in patients best interests consult with those who know the patient well and document decisions.
Pain management
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Check how the person communicates pain
Record indicators eg; facial expression, guarding, behaviours,
Consider words used to express pain
Pain tools eg; Abbey Tool, communication book, pain scales
Managing risks
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Clinical care risks: eg. epilepsy, needs personalised equipment, care-plans, assessment.
Environmental risks: eg. sharps, medical equipment, creams, medications
Behaviour risks: eg could harm self or others.
Safety: Increased level of support, side room behaviour management guidelines
Managing anxiety, agitation
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Offer reassurance, tone of voice, body language
Is additional support required?
Adjust the environment eg; side room
Complete risk assessment / inform lead nurse
Management guidelines around behaviours?
PRN medication to reduce anxiety.
Work with relatives/carers if appropriate
View page 2
You must document in the patients Health Record if no Reasonable Adjustments are required
Patient with a Learning Disability Fact Pack September 2010
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Or if Reasonable Adjustments are required document these in the patients Health Record or
care plan
Managing mental health needs
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Consider referral to Mental Health Liaison Team for further advice and support: Contact number - GRH ext:
5490
Check timing of medications
If patient known to have a Consultant Psychiatrist involve them in decisions about medications
Document signs of deterioration
Medication management
Sensitive to timing of medications
Check branded medication
Tablets or syrups
Specific way of taking medication
Explain clearly any changes to medication – check understanding
Accessing other departments eg. OPD, X-ray
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Needs carer / family support
Difficulty with waiting – if yes - inform senior staff within the dept to needs and requirement to fast track
Anxious – quiet area provided
Understanding information – easy read leaflets, written information to take away
Contact number provided for advice
Extra time allowed for appointment
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1:1 support at mealtimes.
Consider regular prompts/assistance to ensure sufficient fluids/food
Cut up food/soft diet/risk of choking - red tray
Special equipment – own cup/cutlery
SALT guidelines in place
Accurate recording – fluids, food input/output
Current PEG feeding regime
Weight
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Managing nutritional needs
Managing personal care needs
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Level of carer support required (ward staff remain responsible for all aspects of care).
Continence – prompting, toileting, pads, bowel charts
Additional support – from hospital?
Supporting carers
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Refer to carers policy (A0059)
Carers badges, parking permits
Use of staff toilet
Establish role of carer & work in partnership
Consider funding implications
Managing discharge
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Always provide a written discharge summary for patient/relatives or carers to include diagnosis, treatment,
medication changes and follow-up
If needs are complex consider discharge planning meeting
Training needs of carers
Equipment/dressings for the home
OT assessment
Referral to specialist services
Detailed written discharge summary
If patient with a Learning Disability – Inform CLDT if required
If patient with Dementia – Inform Managing Memory Together if required
Patient with a Learning Disability Fact Pack September 2010
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Patient with a learning disability
Refer all patients and at each
presentation to the Hospital
Learning Disabilities Liaison Nurse
Team (HLDLNT)
08454 224953 / 85
Patient presents to:
 Pre-admission
 Out Patients Department
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Assess patient needs.
Ask Family member or Carer for the
traffic light assessment. Document -
Refer to Trust Reasonable
Adjustments Checklist
Are the patients’ needs complex?
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Assess patient and Carer needs.
Ask Family member or Carer for the
traffic light assessment. Document - If
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If aware before presentation to hospital setting
HLDLNT liaise with Health Care Team, patient,
family and Carers within the Community setting
and liaise with Trust Health Care Team
If not available, provide one for
patient / family/ carer to complete
(Copies held in E/Dept and ACU)
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Patient presents to Un-scheduled Care
not available, provide one for patient /
family/ carer to complete (Copies held
in E/Dept and ACU)
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HLDLNT
 complete specialist assessments
 liaise with health care team
 place Trust ALERT sticker on patients Health
Refer to Trust Reasonable Adjustments
Checklist
Enter on Triage Screen
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Refer to individual
support plan
Record and document on inner cover
Liaises to ensure Clinical ALERT on ‘Patient First’
Liaises to ensure Clinical ALERT on ‘PAS’
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Is patient to be
admitted?
No
Refer to Trust
Reasonable
Adjustments Checklist
Admission to ward
Yes
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Refer to HLDLNT
Assess patient and Carer needs
Ask Family member or Carer for the traffic
light assessment. Document
 Complete Reasonable Adjustments
Checklist
 Documents if adju
 Liaise with HLDLNT throughout admission
and discharge planning
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plans
Patient with a Learning Disability Fact Pack September 2010 Complete care
Page
13and
of 14risk
assessments, include reasonable
adjustments identified
If patient to be admitted inform
ward that patient has a known
learning disability and reasonable
adjustments identified
No support plan
If yes -inform ward patient has a known learning

disability
reasonable adjustments identified
and copy the Support plan
No
Provide information
regarding treatment and
follow up in format that
patient understands
Useful links
Hospital intranet site – learning disabilities
Hospital intranet site – Health Facilitation Team 2gether
South West NHS – shared easy read resources ‘A picture of health’ see link
below.
www.apictureofhealth.southwest.nhs.uk
Learning disability liaison nurses ;
Carol Forbes 08454 224985 / 07825927912
Bev Farrar 08454 224953 / 07825928091
Patient with a Learning Disability Fact Pack September 2010
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