All Learning Together
SHROPSHIRE and TELFORD & WREKIN
INFORMATION RESOURCE PACK
“Your next patient has a learning disability”
IMPROVING HEALTHCARE FOR PEOPLE WITH
This resource pack has been compiled by
Health Access Nurse
South Staffordshire & Shropshire Healthcare NHS Foundation Trust, Developmental Neurosciences & Learning Disabilities
Directorate, Health Access Team, Mytton Oak Unit, Royal Shrewsbury Hospital (North), Shrewsbury, Shropshire, SY3 8XQ.
Tel : 01743 261181
Adapted and special thanks to
South Birmingham PCT
Based on the resource pack complied by
CSIP Valuing People Support Team
The Valuing People Website provides further information and resources
This pack is also available electronically
If you have any corrections or updates of information contained within the pack please forward this information to:
Website address - http://www.southstaffsandshropshealthcareft.nhs.uk
For Primary Care Teams
Access to Primary Care
for People with a Learning Disability
What is a Learning Disability? 5
How People with a Learning Disability Communicate? 9
Guide for Staff 10
Health of People with a Learning Disability 11
Health Action Plans 12
Mental Capacity Act (2005) Decision Making Pathway 13
Mental Capacity Act (2005) Best Interest Pathway 14
Good Practice / Mencap / Death by indifference 15
Your next patient has a learning disability……. (SSSFT, leaflet) 17
Questions to Ask before you leave for an appointment 19
The A-Z of Health Issues affecting people with learning disabilities 20
Syndrome Specific Checklist (of recognised potential medical complications) 25
Action to take if an adult with a Learning Disability is refusing life saving/emergency treatment 26
Advice for Hospital and Health Professionals
10 Recommendations from “Healthcare for All” 28
References and Acknowledgments 32
Useful Websites / Useful Contacts 34
Learning Disability Services Contact Details
South Staffordshire 36
Telford & Wrekin 37
Partnership Board Lead Officers 38
“To enable people with learning disabilities to access a health service designed around their individual needs, with fast and
convenient care delivered to a consistently high standard and with additional support where necessary”.
The white paper Valuing People (DOH, 2001) sets out the Government’s commitment to improving the lives of people with a learning
disability. It is identified that people who have a learning disability are amongst the most vulnerable and socially excluded in our
(Valuing People - Chapter 5)
All people with a learning disability to have a health facilitator.
All people with learning disabilities to be registered with a GP
All people with a learning disability to be offered a Health Action Plan
NHS to ensure that all mainstream hospital services are accessible to people with a learning disability
New role for specialist learning disability services, making the most effective use of expertise
What is a Learning Disability?
The following definition is taken from Valuing People: A Strategy for Learning Disability for the 21st Century (DOH, 2001.)
Learning Disability includes the presence of:
A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with:
A reduced ability to cope independently (impaired social functioning):
Which started before adulthood, with a lasting effect on development.
Learning Disability does not include all those people with a Learning Difficulty
Learning difficulty is a term used by some agencies in the content of special education to differentiate from the health needs of
people with intellectual impairments. It is felt to place less emphasis on disability, which they feel results from environmental as
Description of Learning Disabilities
(Adapted from the ICD-10 classification and mental and behavioural disorders, World Health Organisation, 1992)
Category of IQ Typical Abilities
Learning (Based on ICD-10)
Mild 50-70 Hold conversation, Full independence in self-care.
Practical domestic skills. Basic reading/writing. Many adults will be able to
maintain good social relationships and employment
Moderate 35-50 Limited language. Need help with self-care. Simple practical work (with
Usually fully mobile.
Most adults will achieve a degree of independence and will require varying
levels of support.
Severe 20-35 Use of words/gestures for basic needs. Activities need to be supervised.
Work only in very structured situations.
Ongoing support/supervision required in all aspects of self-care.
Profound Below 20 Unable to understand requests, very limited communication. Little or no
self-care skills. Usually incontinent with severe impairment to mobility. Will
require support to fulfil all daily living skills.
Barriers to Accessing Health Care
It is suggested that people with learning disabilities experience difficulty in using and gaining access to assessment and treatment
within mainstream health services. Some of these difficulties may be to due to:-
People with learning disabilities experiencing communication difficulties in making appointments. For example, some people
are unable to read, make appointments verbally or tell the time
Transport arrangements for appointments may prove problematic
Barriers in communication faced by primary care staff who have limited experience of working with people with learning
Reliance on carers to explain the persons health needs and adopt a health promoting approach with them, i.e. routine
appointment reminders and support to access these
Fears and anxiety of going to the doctor’s surgery, as some people may find waiting difficult, may struggle with the concept of
time and may not understand the concept of time
Mainstream healthcare professionals unfamiliarity with services which are available for people with learning disabilities
Physical barriers experienced when a physical examination is required e.g. difficulty lying on an examination couch
Limited development of information leaflets and documentation about people with learning disabilities and their health needs.
Social exclusion of people with learning disabilities
So often, the result of this is that people with a learning disability do not complain of a health problem. One’s inability to describe their
symptoms if they do go to their GP may lead to a wrong diagnosis or illness going undetected.
Difficulties with Access
People with learning disabilities and their carers usually have low expectations for their own health and of the services that
they may receive. Many individuals and carers will tolerate poor health. Some people with learning disabilities may not
understand the process of consultation and will need to be asked questions in straight forward language. There may be a
need for health workers to explain what they need to know, what they need to do, what the equipment does, how it will be
used and how it will feel.
Understanding of time can be difficult and so questions about the sequence of events may need to refer to familiar events
such as “was it before or after your birthday?” It is often helpful at times for the administration of medicines to be related to
routine daily events such as meal times.
It is important to talk to the person first and then check out with the carer or support worker if something is not clear. The
person may understand, even if unable to communicate, and should be included in their consultation.
Throughout the consultation signs, symbols or other means of assisted communication may be needed, usually with the help
of a carer or support worker.
Good communication is essential when dealing with individuals who have a learning disability. A person with a learning disability
may have limited communication, comprehension and social skills. In order to reduce distress, poor co-operation and difficult
behaviours we need to ensure that we are effective in our communication and that we communicate at a level that is understood by
Some people with learning disabilities will need extra time, because communication can take longer and require care. Plain
Language is best supported by visual information whenever possible. It is a good idea to ask questions or change the question.
Understanding can also be checked by asking the person to explain the issue in their own words.
The following information has been adapted from Welsh et al (2001):
Language should be kept simple
Keywords should be emphasised
Long words, abstract ideas, comparisons and euphemisms should be avoided
Be aware of the language the person uses
Be aware of your voice, conveying confidence, patience and care will help interaction
Take time to explain things to the individual
You may need to repeat the information many times.
Waiting should be kept to a minimum
How an Individual with a Learning Disability may communicate
Individuals who have a learning disability may be able to comprehend (understand) more then they can articulate
They may be repetitive
If they are anxious or upset their speech may become quicker or louder
Some individuals may have developed their own words to express themselves
The individual may avoid or overuse eye contact
They may not understand the social boundaries relating to personal space or touch
They may use different sounds or gestures to convey their needs
They may use signs, but may have their own way of signing
Individuals may use pointing as an indication of their needs
It is important to consider the environment, many factors can impair communication e.g. noise, distractions
Waiting is often difficult when a person is anxious about something, fear may build up causing uncooperative or difficult to
You should be aware of your body, a relaxed, confident manner will be more reassuring to an individual
Facial expression should be used to back up verbal communication, e.g. smiling to reassure the individual
People with a learning disability may have little concept of another person’s space and may come very close, however this
does not mean that they have no concept of their own, so verbal communication is necessary when approaching an individual
Ensure that a rapport has been established before there is any physical contact
Give explanations as to what is happening
Observe for signs of anxiety or distress, if you feel unable to deal with this request assistance from other members of staff
Be aware of the way that the individual communicates. If they use signing or symbols ensure that someone who has these
communication skills is available to support you
The main signs that are used come from MAKATON which has been developed from British Sign Language
You may need to use gestures to emphasise verbal language
Stress Free Guide for Staff
Think about the person’s capacity to consent to any proposed intervention. Try to evaluate if you need to obtain the persons’
capacity to consent or if you are proceeding in the “Best Interests” of the person. (see M.C.A page11)
Try to obtain as much accurate information about the condition as possible, always ask the person first using simple words and
sentences don't talk about the plumbing and water works when you need to ask about their wee! If there is difficulty then ask the
carer if they can clarify the details
Try to remember health promotion advice that you would give out routinely, include special leaflets for people with a learning
disability e.g. Going for a Smear
Include people with a learning disability in all your quality outcomes initiatives e.g. Diabetes/CHD/Asthma. These are all potentially
undiagnosed, and often not monitored in people who have a learning disability
Highlight those patients who cannot tolerate waiting in the waiting area. If possible wait somewhere else or in the car. Phone the
carer when you know the GP is ready
Is the surgery easy to get around? Have your pictures on the doors, of the Doctor, Nurse, and W.C. Can the patient understand
when the next appointment is due, can they tell the time, and would an appointment at O’clock be easier than 9.45am?
Requests for home visits particularly from learning disability community homes can be avoided if you can be flexible with
appointment times. Sometimes limited staff and the demands of other residents make it difficult to attend during routine times
If in doubt ask your healthcare facilitator for advice
Health Issues and Additional Health Needs of People with Learning Disabilities
Research has demonstrated that many people with a learning disability have a range of undiagnosed and untreated health problems
(Martin Beange). Often they themselves don't recognise the symptoms of illness or that they are in fact unwell; if they do recognise
they are ill, they are often unaware what help is available or what to do about it. Prevention and early detection of illness is
something we all value. Regular health screening would recognise and help to prevent or treat conditions. Early intervention would
increase the success rate of treatment if needed. Inviting people with a learning disability for health screening would increase early
detection and treatment of health problems and also increase their awareness of services available. This in turn will help primary
care services to meet their government targets.
It is acknowledged that people with a learning disability are likely to experience two times more health problems than the average
person in the general population.
The main health problems for people with a learning disability are:-
Respiratory disease—the leading cause of death (46%-52%) this is much higher than the general population (15%-17%)
Coronary heart disease—second most common cause of death (14%-20%) - nearly 50% of people with Down’s Syndrome are
affected by congenital heart defect
Stomach disorders and proportionally higher rates of gastrointestinal cancer
Hypothyroidism—people with Down’s Syndrome have a greater risk of hypothyroidism, with risk increasing with age
Osteoporosis—people with a learning disability have substantially lower bone density
(Elliot, Hatton and Emerson, 2003)
15 Health Targets
Agreed by international consensus as highly prevalent, easily detected, and amenable to readily available treatments (Beange, 1999).
Monitor nutritional status by regular height and weight checks
Prevent and treat chronic constipation
Update epilepsy treatment, seizure review
Screen for thyroid deficiency especially Down’s Syndrome
Identify and treat mental health problems
Identify and treat gastro-oesophageal disease
Identify and treat osteoporosis, take preventative measures, where possible
Review medication frequently, possibly three monthly
Ensure vaccinations are updated, including flu/hepatitis
Provide exercise opportunities
Offer physical assessment by medical practitioner
Refer to a genetic clinic those without an aetiological diagnosis
Arrange mammogram/smear tests as in general population
Regular access to dental checks
Hearing and vision checks
Health Action Plans
A Health Action Plan details the actions needed to maintain and improve the health of an individual and any help needed to
accomplish these. It is a mechanism to link the individual and the range of services and supporters they need, if they are to have
better health. Health Action plans need to be supported by wider changes that assist and sustain this individual approach. The plan
is primarily for the person with learning disabilities and is usually co-produced with them.
The Mental Capacity Act 2005
The Mental Capacity Act (DOH 2005) is underpinned with five key principles that reiterate previous guidance and common law
principles placing it firmly in statute.
1. A presumption of capacity - every adult has the right to make his or her own decisions and must be assumed to have the
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. That individuals must retain the right to make what might be seen as eccentric or unwise decisions.
4. Best interests – anything done for or on behalf of people without capacity should be the least restrictive of their basic rights
5. Least restrictive intervention – anything done for or on behalf of people without capacity should be the least restrictive of their
basic rights and freedoms.
The presence of a learning disability must never lead to presumed inability to consent to all interventions. The Mental Capacity Act
offers a “decision specific test” that has been designed to assess capacity regarding a particular decision. Lacking capacity for one
intervention, therefore, should not lead to assumed lack of capacity for another decision. Simply referring to the person’s condition,
diagnosis, age or behavioural pattern as a route to establishing capacity will not be acceptable under section 2 of the Act.
The law assumes that everyone has the capacity to consent unless it can be shown that the person is not able to understand and
retain information material to the decision, or to use it and weigh it in the balance as part of the process of arriving at the decision.
Deciding whether a person has the capacity to consent is a matter for clinical judgement. No one can consent to or refuse treatment
on behalf of another adult who lacks capacity to consent.
However, there is at present a common law duty for doctors to provide medical treatment to adults who are unable to consent to or
refuse treatment if that treatment is “necessary” and in their “best interests”. Necessary treatment can include a range of situations
from non-invasive investigations, such as eye tests, to more exceptional surgery. Such treatment must preserve the life, health or
well being of that person. (DoH 2001, A).
Mental Capacity Act (2005) Decision Making Pathway
All adults should be presumed to have capacity unless the opposite has been demonstrated. Consent
Legal/Statutory requirements of the Mental Capacity Act (2005)
must be obtained by the person undertaking the procedure and is specific to the decision to be made
Issue requiring person to give informed consent Test for Capacity:
•Understand the information given to them
•Retain the information long enough to make the decision
Do you think the person has the capacity to consent •Weigh up the information available to make the decision
•Communicate the decision
Following assessment of Capacity – No;
person does not have capacity Valid Consent is:
Yes Unsure •Given by a competent person
•Be given voluntarily
Is there an Advance Statement/Directive? •Given following receipt of adequate information
Is there a Lasting Power of Attorney or
Respect the wishes of deputy? Assess capacity to All practicable steps:
the person. consent •Consider use of real objects or photographs/hierarchy of symbolic
A person with Yes No See Test for •Arrange visits to treatment areas
Capacity has the right Capacity •Develop information packages that are accessible
to make what might be
seen to be eccentric or
•Give the person extra time
You must seek Does the decision involve a Clarify what is Valid
unwise decisions legal advice serious medical treatment or Consent Least restrictive option: Anything done for or on behalf of the person
The NHS arranges Hospital without capacity should be the least restrictive to their basic rights and
stay for 28 days or more or freedoms
The arrangement of
No accommodation for 8 weeks or Best Interests: Anything done for and or on behalf of a person without
more capacity must be in the person’s best interests
A best interests meeting should include all relevant parties include the
Every person has the right to Has/ ensure that all practicable person, medic (GP/ Doctor), advocate/IMCA, carers, nurse, Allied Health
be supported to make their steps been taken to ensure Professional and or people who know the person well
own decision understanding Yes
An Independent Mental Capacity Advocate (IMCA) must be involved if
the person lacks capacity and has no relatives and or close friends and
Ensure that all who are involved in requires:
the persons welfare are consulted You must •Serious medical treatment; which involves providing, withdrawing or
Consult an withholding treatment in specific circumstances where; In what is being
No IMCA proposed, there is a fine balance between the likely benefits and the risks
Yes to the person, or where there is a choice of treatments, and a decision as
to which one to use is finely balanced or what is proposed would be likely
Arrange a to involve serious consequences for the person
Is there an alternative best •Or the NHS arranges a hospital stay for 28 days or more
Yes No interests •Or the NHS or Local Authority arrange accommodation for 8 weeks or
•Deprivation of Liberty Order
Is this in the person’s Consider •Safeguarding Adults Procedures
best interests best
interests Authors: Allyson Kent, Mike Hood (2007)
Yes; go ahead 13
Mental Capacity Act (2005) Best Interest Pathway
Principle 4 - Anything done for, or on behalf of a person who lacks capacity must be done in the persons best interests
The decision maker takes the responsibility to ensure that the proposed action is
Test for Capacity has found the person lacks the capacity to in the best interests of the person
consent therefore a best interests meeting must be arranged The decision maker needs to check if there is an advance directive, LPA or
Deputy or if there is a friend/carer of person nominated by the person to consult
Is it likely that the person may have capacity in the future? All relevant parties; the person, GP/Doctor, carers, nurse, allied health
professional, social care staff, advocate, IMCA, or people who know the person
The decision maker must:
Can the decision or act wait until that time; Does the decision involve •Consult with all relevant others i.e. the person, medic/GP, advocate/IMCA,carers
consider if it is likely that the person will at serious medical treatment and others involved with the person ie LPA/Deputy/EPA
some time have capacity to the matter in or a care home move
question. •Identify the views of all relevant people in the persons life
No Yes •Not make assumptions about a persons best interests based upon the persons
Yes No age, or appearance, condition or any aspect of their behaviour
Arrange the best Is there a relative •Consider all the relevant circumstances relating to the decision in question
Delay the decision until that You will need to interest meeting and /friend of individual
time evidence your invite all relevant nominated by the •Involve the person as fully as possible
decision making parties person to consult?
Can you identify when the
person may have the
•Ensure that the decision concerns the preservation of withdrawing of life
sustaining treatment, the decision maker must not be motivated by a desire to
capacity? As decision maker follow Yes No bring about death
the checklist opposite
Document and discuss with
relevant others •Be able to justify and evidence their decision making
Is there agreement that the proposal Instruct an •Ensure that other least restrictive options are always explored (please complete
is in the persons best interests best interests decision record)
As far as possible the decision maker must consult with other people as
appropriate to do so and take into account their views as to what would be in the
No Yes best interests of the person lacking capacity, especially anyone previous named
by the person as some one to be consulted, carers, and close relatives or friends
of others involved in the persons welfare, LPA or deputy appointed by the court of
Is there a dispute protection. If it has not been possible to contact people, give details why not
Evidence decision making using possible
agreed decision record
Try to resolve locally Record keeping; it is important that you accurately record and evidence any
decisions made with regards to best interests
Agreement reached Proposed action, treatment goes ahead, To access Court of Protection refer to Public Guardian
with evidence via the Decision Record that
Seek Court of No Yes the action is in the persons best interests Authors: Allyson Kent/ Mike Hood (2007)
Death by indifference shows the tragic results that poor treatment of people with a learning disability can result in.
There is work being done to make sure that people with a learning disability do get the treatment they need when they use health care services.
Here are some resources that you might find useful:
Advice for hospitals and healthcare professionals
This is a checklist that Mencap have put together, with the help of doctors, for medical professionals who are treating a person with a learning
disability to go through to make sure they are meeting their patient’s needs.
'Going into Hospital' is a new DVD designed to give people with a learning disability information on going into hospital. It has been produced by
and for people with a learning disability.
For more information, please visit www.speakup.org.uk
Disdat - assessment tool
This is a distress assessment tool designed by St Oswold’s Hospice. It is designed to help health professionals identify distress cues in people
who because of cognitive impairment or physical illness have severely limited communication.
download information about Disdat (PDF) download the Disdat tool (PDF) download the Disdat monitor sheets (PDF)
Acute care report
‘Access to Acute Care; Supporting People with a Learning Disability on Admission to Hospital’ is a report by the National Network for Learning
Disability Nurses. It includes some excellent examples of good practice.
the role of a liaison nurse in developing understanding of learning disability needs to key medical staff
written guidelines to identify a patient with a learning disability’s journey through hospital admission
an assessment scale to help ward staff to assess the needs of a patient and organise appropriate staffing to support them.
For more information, please visit www.nnldn.org.uk
Mental Capacity Act - code of practice
The Mental Capacity Act code of practice explains how and when decisions should be made on behalf of people who lack capacity.
It provides guidance and information on how the Mental Capacity Act will work on a day to day basis for anyone who works with or cares for
people who lack capacity, including family, friends and unpaid carers.
For more information, please visit www.dca.gov.uk
Paediatric Pain Profile – assessing pain in profoundly disabled children
Developed with Great Ormond Street Hospital, this is a project to enable healthcare professionals and carers to work together to assess pain in
profoundly disabled children.
For more information, please visit www.ppprofile.org.uk/
“Meeting the health needs of people with a learning disability”- Guidance for nursing staff
Produced by the Royal College of Nursing, this guide provides practical information and advice for nurses and nursing students who aren’t
learning disability specialist meet the needs of their patients with a learning disability.
download the guidance for nursing staff (PDF)
The hospital communication book
Developed with the Surrey Learning Disability Partnership Board, this is a practical guide to help people who have difficulty communicating get an
equal service in hospital.
download the hospital communication book (PDF)
A learning disability is…..
“A significantly reduced ability to understand new or complex
informa tion, to learn new skills (impaired intelligence), with a
reduced ability to cope independ ently (impaired social function), which
started before adul thood and has a lasting effect on a person’s
Your next patient has a (Valuing People, DoH 2001)
People with learning disabilities share a set of core difficulties,
although these may be more or less prevalent d epending on the
individual. These difficulties include;
Comprehension - understanding wha t is said or meant
Expression—ma king themselves understood and expressing needs
Attention—may be li mi ted
Perception —of events, language and the world we live in may differ
Short term memory —of ten li mi ted
Coping with change—thi s is of ten a challenge
The health care visit
It is essential tha t the heal th care tea m be crea tive, and flexible and, where
possible, prepa re in advance. below are some steps to
follow to make the appointment a success.
Pre-assessment a short telephone conversa tion with a caregiver could
make all the difference.
Communication. Consul t with caregivers for tips tha t work. They are
your grea test allies and they are best experts on this person. How much
language does the person understand? Can they consent to trea tment?
Planning . based on the person’s needs and sensi tivi ti es. eg
a quiet waiting area for someone who is sensi tive to noise, or seeing a
patient in a different room where there is less equipment.
A practical guide for health care professionals to
Be familiar with communication and behavioural skills to promote
effectively meet the needs of patients with a compliance. Find out who your learning disabled pa tients are and sta rt to
learning disability build relationships with them. Thi s will pay dividends in the future.
Investigate all possible causes. Challenging behaviour is not part of
learning disability—i t may be a person’s only way of telling us something is
wrong. Examine pa ti ents properly and rule out all other causes before
assuming psychia tric or psychological causes.
Techniques to use with people who have learning Remember!
Waiting is the hardest part of the visit
Address the person using their chosen name. Mini mise waiting ti mes.
Do not just talk to caregivers. Engage the pa ti ent in their own care and Try to perform the procedure/visi t i mmedia tely without waiting.
talk People may have exceptional long term memories!
to them, even if the carer needs to answer on their behalf. A good experience may resul t in better coopera tion or less anxiety a t
Choice the next visi t.
If possible, offer choices on appointment ti me, who the pa ti ent would A nega tive experience will make future visi ts very difficult
prefer to see and where they would prefer to be seen. Caregivers/and family members often know best
Extra time Always ask what works best and wha t to a void.
Plan to spend a t least twice as long with people who ha ve a learning Ask about communica tion, understanding, previous experience abilities
disability. This way, neither you or they will be rushed and you will have and sensi tivi ties (touch, smell, noise etc).
ti me to have a more fulfilling appointment. Use the caregi vers approach to the pa ti ent as a guide for interacting
Imitation and Role Modelling and involve them in the appointment.
Use objects and equipment to represent the pa tient and Caregivers are not medically /clinically trained —be supporti ve and
procedure—using a pen to symbolise an injection etc. Also, demonstra te understanding.
non-invasive techniques on yourself or a carer, like taking a blood An accepting attitude is critical
pressure measurement. Speak directly to the pa ti ent. Show them you value them.
Visuals Be prepared to work from the pa tients perspective, or follow a
For pa tients who have difficulty with language, procedures can be patient around—a flexible and relaxed approach is essential.
explained using pictures or photographs showing what will happen and will Use a gentle tone of voice and mini mise words and touch.
be expected of them Allow the pa tient to touch and hold equipment before i t is used.
Adjust the physical environment where possible
Reduce sensory sti mula tion and interruption.
Remove unnecessary clinical equipment if required.
This is a big concern for heal th professionals. English law sta tes tha t
everyone should be deemed capable of giving consent until an Focus on the positive
assessment proves otherwise. Compliment the pa tient on coopera ti ve behaviour.
If a patient does not, in your opinion, have capacity to agree to or Ignore behaviours tha t might seem odd (e.g. unusual vocalisations or
refuse trea tment, you are legally obligated to act in thei r overall best body gestures)
For further information or support...
Complete Consent Form 4 and make sure you talk to the people who
know the pa tient best before making your deci sion.
If in doubt, seek advice from the Communi ty Tea m or Learning Health Access Tea m 01743 261181
Disability Division Acknowledgement to Warrington PCT
Reviewed November 2008
Copies available from the Department of Health or download from - http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_079531
(Department of Health, 15.10.07)
THE A – Z OF HEALTH ISSUES AFFECTING
PEOPLE WITH LEARNING DISABILITIES
COMMUNICATION - 50 – 90% of people with learning disabilities have communication difficulties. Communicating ill health can often be difficult for people with
learning disabilities and may present in different ways i.e. through changes in behaviour, abilities or personality, social withdrawal, aggression or self harm.
CONSENT - It must be assumed that everyone has the capacity to give consent until proven otherwise. Acting in someone’s ‘best interest’ must be a multidisciplinary
decision and documented accordingly, (DOH consent form 4). Nobody should be signing consent forms on behalf of another adult.
ACCESSIBLE ANNUAL HEALTH
ANNUAL HEALTH APPOINTMENTS
2% of the population will have INFORMATION
CHECKS Waiting for appointments can cause People with learning disabilities are
a learning disability. This Accessible information should be Regular health checks (1-3 great anxiety for some people with people first – each health problem
suggests that a GP with a list made available to all people with yearly) to people with learning learning disabilities. GP practices presented should be isolated from
of 2000 will have about 40 learning disabilities to maximise disabilities often leads to the and departments could be more the learning disability and treated
patients with a learning their capacity to understand and early detection of previously flexible by offering double separately. Attitudes and
disability. Each health practice consent to treatments. unmet health needs. appointments, first or last assumptions that people with
and department should ensure appointments or separate waiting learning disabilities cannot make
that their physical and areas for challenging patients. decisions, understand treatments
cognitive environment is Keeping patients informed of or make their own choices are
accessible to people with waiting times could also help to discriminatory and inappropriate.
learning disabilities. reduce anxiety levels.
BARRETT S CANCER BARRIERS
BEHAVIOUR BETTER METRICS
Intestinal metaplasia 15 – The barriers to receiving Physical illness should always be The better metrics project links in
26% of population are at risk appropriate healthcare are considered as a cause of with the NHS Plan and NSF targets
due to reflux often present inn numerous and include behaviour changes. Much and includes 12 clinical
older people in the general inaccessible services, behaviour can be attributed to performance measures relating to
population but seen in pwld at communication problems, environmental stress, ill health, people with learning disabilities.
an earlier age. complex information, fear and lack of occupation or poor These include up to date LD
lack of confidence. communication skills. registers in GP practices and
Challenging behaviour could also annual health checks.
be the result of an underlying
CONSTIPATION CORONARY HEART
CORONARY HEART CARDIOVASCULAR
A growth or tumour caused by An opacity of the lens of the eye People with learning disabilities DISEASE
DISEASE Other Cardiovascular issues for
abnormal or uncontrolled cell can be hereditary – caused by are more prone to constipation This is the second most common people with learning disabilities
division in general death injury or as a consequence of due to immobility, poor fluid cause of death amongst people include;
caused by cancer is lower in diabetes intake, medications and limited with learning disabilities (14%- Mitral Valve prolapse,
pwld than the general food choices. Reliance on 20%). Between 40 and 50% of associated with Down Syndrome
population but we are seeing laxatives should be replaced with people with Downs syndrome are Aortic dilation
an increase in the numbers of fibre rich foods, exercise, more affected by congenital heart Poor peripheral circulation
people with gastro intestinal fluids and a healthy diet. defects.
DIAGNOSTIC DOWNS SYNDROME
DOWNS SYNDROME DYSPHAGIA
People with learning People with learning disabilities OVERSHADOWING
OVERSHADOWING People with Downs Syndrome have Difficulty or inability to swallow.
disabilities are more likely to are more prone to diabetes due This occurs when the learning many associated health problems 85% of pwld have this problem.
develop early dementia (21% to sedentary lifestyles and disability ‘trumps’ the physical or which need regular monitoring. Can be diagnosed by Speech &
vs. 5.7%). obesity. The condition is often mental health need. These include; heart defects, poor Language Therapist. In the
Around 40 – 50% of people undiagnosed and needs to be Health professionals need to look vision, hearing and dentition, community where an individual has
with Downs Syndrome will monitored and managed past the learning disability and obesity, early dementia, thyroid deteriorated in their ability to eat or
show symptoms of dementia effectively. treat the symptoms presented. and respiratory problems. drink which is affecting their
by the age of 50. nutritional state
EARS - WAX
EARS - WAX EARLY DISCHARGE
EARLY DISCHARGE EATING
EPILEPSY EQUAL RIGHTS
A build up of ear wax in pwld People with learning disabilities DISTRESS/DISORDERS
DISTRESS/DISORDERS 20% of people with learning People with learning disabilities
is very common but often are more likely to be discharged Greater awareness of these disabilities have epilepsy compared have equal rights to be included in
undiagnosed and attributed to early from hospital, often with issues needs to be raised as the to 1% of the general population. all health targets and initiatives.
poor hearing. Regular health inappropriate discharge effects are far wider than The incidence rises to 50% in Routine health screening and
checks should include summaries or aftercare plans. expected. people with profound and multiple health promotion initiatives should
examination of the ears and a disabilities. also apply to people with learning
hearing test. Ear infections disabilities.
could also be the cause of [Shorvon SD (1995) The Epidemiology of Epilepsy] Don’t leave them out!
behaviour changes i.e. head
banging or face slapping.
FITNESS PHYSICAL EXERCISE
Fear of unfamiliar TREATMENTS
TREATMENTS People need to be encouraged to 80% of this group of people do less
surroundings, people and Treatments and advice given by become fitter through taking physical exercise than is
procedures is the biggest health professionals should be more exercise. recommended. Immobility, lack of
obstacle faced by people with simple and clear and in a format opportunity, poor staffing, financial
learning disabilities when understood by the individual. and transport problems are often
accessing healthcare services. Checking comprehension will the cause.
help to clarify that information Boredom, apathy, depression and
has been understood. hostility can be helped with regular
Write it down.
GASTRO-OESOPHAGEAL REFLUX (GORD)
GASTRO-OESOPHAGEAL REFLUX (GORD) GASTRO-INTESTINAL CANCER
Up to 50% of people with learning disabilities could be suffering Higher rates of gastro-intestinal cancers can be found in people with
from GORD. It may present as challenging behaviour as symptoms learning disabilities and it is the most common form of cancer within
are quite painful. this group. (48%-58% vs 25%).
HEARING HEALTH ACTION PLANS
HEALTH ACTION PLANS HELICOBACTER PYLORI
HELICOBACTER PYLORI HIATIUS HERNIA
HIATIUS HERNIA HEPITITUS B
IMPAIRMENTS “All people with learning High rates of H-pylori can be This is where there is a hole in the 11 – 55% of pwld have it.
40% of people with learning disabilities will be offered a HAP found in people with learning diaphragm this is the muscle
disabilities have hearing by June 2005”. (DOH 2001). disabilities who have lived in between the stomach and the chest
problems. Deafness is Health Action Plans require a institutions (60-90%). It may be – the top of the stomach moves
common and is often medical health check and instrumental in increased into the hole causing a hiatus
unrecognised and poorly thorough assessment of health mortality rates from stomach hernia – often goes undetected in
managed. Impacted ear wax needs. Health facilitators should cancer and perforated ulcers. ld population
is a frequent problem also be identified for each
overcome by regular health individual.
IDENTIFYING A LEARNING DISABILITY
IDENTIFYING A LEARNING DISABILITY IMMUNISATIONS
A learning disability presents as a significantly reduced ability to Research demonstrates that people with learning disabilities are less
understand new or complex information, learn new skills and cope likely to receive regular immunisation. Influenza, pnenococcus,
independently. IQ is often below 70 and onset must have Hepatitis A + B are recommended for this group.
occurred before adulthood (age 18).
JOINT WORKING JARGON
Primary and secondary health services need to be working in Avoid jargon and use clear,
partnership with specialist Learning Disability services to provide simple language.
equitable services to people with learning disabilities.
Means cone shaped cornea. KEEP IT SIMPLE – short There is a general lack of knowledge by doctors and nurses of the
Can be rectified by glasses or phrases, visual prompts, clarify special needs of people with learning disabilities particularly around
eventually a cornea graft salient points and confirm communication, behaviour and consent. 75% of GPs receive no training
comprehension. Speak slowly in learning disabilities issues.
LIFE EXPECTANCY LIFESTYLE
The life expectancy of people with learning disabilities is increasing People with learning disabilities often lead unhealthy lifestyles are
over time (67 for men, 69 for women), 55 for downs) but is still inactive, obese and have poor nutrition. Poverty, unemployment and
less than that of the general population. social exclusion also affect/inhibit healthy lifestyle choices.
MEDICATION MENTAL HEALTH
MENTAL HEALTH MOBILITY
MOBILITY MORTALITY AND
MORTALITY AND MUSCULAR PROBLEMS
Polypharmacy and inadequate Psychiatric disorders are more People with learning disabilities MORBIDITY
MORBIDITY Due to the genetic abnormalities
medication review are prevalent in people with learning are more likely to have a People with learning disabilities associated with some causes of
acknowledged within this disabilities compared with the physical disability then the have an increased risk of early learning disabilities the following
client group. Anti-psychotics general population. general population. Early death, although the life expectancy problems may be present in people
can often be inappropriately Schizophrenia, depression, intervention and treatment of of this population is increasing over with learning disabilities;
prescribed and poorly anxiety, self injury and pre- immobility can reduce the risk of time. Hypotonia
reviewed. senile dementia are all common secondary illnesses. Connective tissue dysplasia
in this group.
NATIONAL SERVICE NEUROLOGICAL
PROBLEMS The National Patient Safety Less than 10% of adults with
NSF’s for the general Cognitive decline in people with Agenda lists 5 priority areas for learning disabilities eat a balanced
population also apply to learning disabilities can often be keeping patients with a learning diet. There is a general insufficient
people with a learning difficult to detect. Health checks disability safe in hospitals. They uptake of fruit and vegetables and
disability and must include should always include limb are dysphagia, accessible a lack of knowledge and choice of
this group in all delivery plans. movement, tone and gait, information, vulnerability, use of availability of healthy food options.
seizure activity, declining physical intervention and mis-
function, memory loss or any diagnosis.
changes in moods or behaviour.
OBESITY O LDE R P E O P LE
O LDE R P E O P LE OSTEOPOROSIS
Overweight Due to increased life expectancy Osteoporosis and osteomalacia are both increased in this population,
People with learning disabilities living in the community are more this group of people are now particularly for people with small body size, hypogonadism and downs
likely to be obese (56% of men, 73% of women). Obesity is a more likely to have age related syndrome. There is also an increased risk of fractures and falling down.
special risk for adults with Downs syndrome and Prader-Willi health problems such as strokes, Osteomalacia is the result of vitamin D deficiency
syndrome. heart disease and cancer
PAIN PERSON CENTRED
PERSON CENTRED POSTURAL CARE
POSTURAL CARE PNEUMONIA
PNEUMONIA Priimary Care Framework
Pr mary Care Framework
Due to associated problems PLANNING
PLANNING Postural care assessments are Disease causing inflammation or
with communication, pain can Person Centre Planning ensures recommended for people with congestion of lungs. People with ld http://www.primarycarecontracting
often be expressed in a that people will have control complex disabilities. Correct prone to aspiration pneumonia due .nhs.uk/uploads/primary_care_serv
behavioural change. Pain over their own lives and the postural management will reduce to reflux – swallowing difficulties. ice_frameworks/primary_care_servi
assessments for people with services that they receive. The long-term need for surgery or ce_framework__ld_v3_final.pdf
learning disabilities monitor Health Action Plan may form part equipment and ultimately reduce
physiological and behavioural of the person centred plan. pain and improve body function.
symptoms as well as facial
QUALITY OF LIFE
QUALITY OF LIFE
Sadly there is still evidence of doctors making value judgements about the quality of life of people with profound and multiple disabilities.
Denying treatments, failure to make life saving interventions and automatic DNR notices are still occurring.
READ CODES REGISTERS
REGISTERS RESPIRATORY DISEASE
Valuing people have Valuing People states that all This is the leading cause of
recommended that READ Code people with a learning disability death for people with learning
E3 (Mental Retardation) be should be registered with a GP disabilities (52%). Aspiration
used in GP practices. The by June 2004. Each practise and respiratory tract infections
term ‘mental retardation’ needs to be able to identify their can be caused by congenital
however is inappropriate and learning disabled population defects, vomiting, epilepsy,
some practices prefer to use using the appropriate Read coughing, feeding, breathing and
the code Eu81z) (learning Code. swallowing difficulties,
disability nos). regurgitation and
SEXUAL SKELETAL PROBLEMS
SKELETAL PROBLEMS SKIN DISORDERS
People with learning 3% of people with learning RELATIONSHIPS
RELATIONSHIPS Due to the genetic abnormalities There are many skin problems that
disabilities are often excluded disabilities compared to 1% of It cannot be assumed that associated with some causes of are associated with people with a
from national screening the general population, have people with learning disabilities learning disabilities the following learning disability including;
programmes.Women with a schizophrenia. do not have sexual relationships. skeletal problems may be present Eczema
learning disability are about 4 Presentation of mental health They should be included in all in people with learning disabilities; Haemangioma
times less likely to undergo problems will depend on screening programmes. Some Scolosis
cervical smear tests than the cognitive, communicative, women may have experienced Atlanto Occipital+
general population (24% vs physical and social functioning sexual abuse and should be Atlanto axial instability
82%). They are also less within this client group. called up for smear tests.
likely to have breast
examinations or be invited to
attend for a mammogram.
A recent MENCAP paper reported that 75% of GP’s had received Poor oral health is one of the most frequent Children and adults with Down syndrome are at increased
no training to help treat people with learning disabilities. Lack of health problems in this population – one study risk of thyroid dysfunction, particularly hypo thyroidism.
training and skills among healthcare staff results in people with found that 86% of people with a learning Thyroid disease can be difficult to diagnose in people with
learning disabilities having poor access to health services and poor disability had dental disease. They have poor learning disabilities, and often presents itself as a change in
health outcomes. oral hygiene, untreated dental caries and more behaviour being the only ‘symptom’.
extractions than the general population.
UNMET HEALTH NEEDS
UNMET HEALTH NEEDS Underweiight
Health screening of adults with learning disabilities registered with GPs reveals high levels of unmet See Weight
physical and mental health needs. Their health needs often go undetected or undiagnosed due to
problems with communication, assertiveness and low expectations.
VALUING PEOPLE VISION
‘Valuing People’ is a White Paper published Approximately 30% of people with learning disabilities “People with learning disabilities are amongst the most vulnerable and
in March 2001. The 4 key principles have a significant impairment of sight. Adults with socially excluded in our society” (DOH 2001). They are often
running through the paper are based on Downs syndrome often present with cataracts, marginalised or excluded and have poor life choices. Prejudice,
social inclusion, civil rights, choice and keratoconus and retinal pathology. Regular monitoring discrimination and isolation are often experienced by this group of people.
independence. The health targets focus on of vision is important in this client group, who rarely
GP registers, Health Action Plans and complain of poor vision.
W WEIGHT – see also Obesity
WEIGHT – see also Obesity
Under nutrition is more prevalent in institutional settings and in
people with dysphagia or eating and drinking problems. The use
of PEG feeding is increasing in this population.
X-RAY EXTRA TIME
See allso “Screeniing”
See a so “Screen ng” Extra time and patience is often needed from Health professionals when
People with learning disability will often need additional support and time to be able to access a range consulting with people with learning disabilities. Longer appointments and
of investigations. This can include visits to gain familiarity with the hospital, additional time for consultations will enable effective communication and comprehension for
appointments so that waiting times are kept to a minimum and that acute staff are aware of the both patient and health professional
individual’s needs. Each individual will need different levels and type of support.
Young adults with a learning disability are often not transferred
from children’s to adult services with adequate health care plans,
particularly those with complex and profound health needs. This
could result in exclusion from adult services.
ZERO TOLERANCE References and Bibliography
TO: Lenox et al – Health Guidelines for Adults with an Intellectual Disability.
discriminatory practice Hatton et al – ‘Key Highlights’ of Research Evidence on the Health of People with Learning Disability
exclusion from health initiatives Barton et al – Cervical screening uptake in women with learning disabilities in Shropshire.
inequitable services DOH 2001 – Valuing People – A new Strategy for Learning Disability for the 21st Century.
inaccessible services Prasher & Janicki – Physical Health of Adults with Intellectual Disabilities.
Poster produced by Esia Dean, Health Facilitation Team, Gloucestershire Partnership NHS Trust
Updated by – Health Access Team (South Staffs & Shropshire NHS Foundation Trust) – 2008
SYNDROME SPECIFIC CHECKLIST
(of recognised potential medical complications)
Down s Syndrome Fragille X
Frag e X Neurofib romatosis
Neurof bromatos s Phenylk etonuria
Pheny ketonur a Prader-Willlii
Sturge-Weber Scle rosis
Sc eros s
Audio /vis ual
Aud o/v sua Bi-annual Optician Visual Impairment Non-specific Bi-annual checks Glaucoma Retinal tumors
assessment recommended. recommended
Hearing Impairment assessments
Ear Wax/Middle Ear Hearing Impairment Hearing Impairment recommended
Infections. Bi-annual (Glioma affecting
Hearing assessment auditory nerve)
Thyroid Disorder Diabetes
Endocrin olo gy
Endocr no ogy Annual Thyroid Function Autistic spectrum Non-specific Unable to produce Mellitus (secondary Non-specific
Test (TFT) recommended features phenylanalaline to obesity)
Alzheimer’s type dementia. Attention Deficit Variable intellectual Variable intellectual Over Eating Variable intellectual Variable intellectual
Psychia tric /
Psych atr c/ Clinical onset not Hyperactivity capacity capacity capacity capacity.
Psycholo gic al
Psycho og ca uncommon before 40 years Disorder in Social Behavioural Tendency for bi-
Functioning. Disabilities in Social problems polar disorder &
Difficulties through Functioning schizophrenia.
Autistic Spectrum Self Injury Autistic features are
Epilepsy in later life not Epilepsy in 10 – 30% of Epilepsy – often Cerebral
CNS uncommon. population. Epilepsy Epilepsy Non specific severe/refractive. astrocytomas
Associated with Dementia. Variable clinical
Hyperactivity phenomena Epilepsy – 75% of
depending on site of people.
Congenital Heart Disease. Aortic dilation Cardiac
Cardio vascula r
Card ovascu ar Often treated as children, Mitral Valve Hypertension leading to Poor peripheral High blood pressure Non-specific Rhabdomydomas
poor peripheral circulation. Prolapse(related to arterial stenosis circulation (benign growth of
connective tissue heart muscle)
Muscu ar/ Atlanto Axial instability Connective tissue Skeletal abnormalities Hypotonia Hypotonia. Non-specific Non-specific
Ske eta dysplasia. Scolosis especially Kyphoscolosis Small hands & feet.
Skin disorders Herniae Variable clinical Eczema Severe obesity. Kidney and Lung
Other phenomena depending Haemangioma Harmartomas
Obesity Abnormalities of speech Promote dental
on the location of Adults to follow PKU checks. (mainly skin and
Sleep apnoea and language neurofibroma. Tumors diet strictly. Polycystic Kidneys
(Hypoplastic Pharynx) meninges)
are susceptible to Skin picking.
Hand flapping Severe (Port wine stain).
Increased susceptibility to LD malignant change Sleep apnoea.
respiratory conditions. Other varieties of
tumors may be Undescended testes.
Most cases are sporadic 2% Most common Autosomal dominant Autosomal recessive Chromasome 15 Sporadic (congenital) Autosomal
Inher tance due to translocation identifiable cause of Dominant
involving chromosome 21 or inherited LD. Inherited metabolic
Ref: “Contact a Family Directory” (2004)
Advice for Hospital & Health Professionals
Beware of missing serious illness. Important medical symptoms can be ignored because they are
seen as part of someone’s disability.
Be more suspicious that the patient may have a serious illness and take action quickly.
Find out the best way to communicate. Ask family friends or support workers for help. Remember
that some people use signs and symbols as well as speech.
Listen to parents and carers. Especially when someone has difficulty communicating. They can tell
you which signs and behaviours indicate distress.
Don’t make assumptions about a person’s quality of life. They are likely to be enjoying a fulfilling
6 Be clear on the law about capacity to consent. When people lack capacity you are required to act in
their best interests.
7 Ask for help. Staff from the community learning disability team can help.
8 Remember the Disability Discrimination Act. It requires you to make “reasonable adjustments” so
you may have to do some things differently to achieve the same health outcomes.
Healthcare For All: Report of the Independent Inquiry into
Access to Healthcare for People with Learning Disabilities (29.07.08)
The Inquiry makes ten essential recommendations for change:
o More effective leadership is essential;
o The government should direct commissioners of healthcare to develop more
appropriate, proactive, `reasonably adjusted’ health services for people with learning
disabilities – including health checks and staff to support access to the NHS;
o Core Standards for Better Health should be amended to reflect the requirement to
make ‘reasonable adjustments’ to services to ensure they are accessible to people
with learning disabilities
o Systems of inspection and regulation must be strengthened at all levels to include
assessment of the provision of health services to people with learning disabilities
o The government should establish a National Confidential Inquiry and a Public Health
Observatory to provide essential information at national and local level.
o Data and information systems must be improved across the board to ensure all
healthcare organisations can identify people with learning disabilities.
o Education and training on learning disabilities should be made compulsory for
medical students and should be improved throughout the NHS.
o Local services should work in partnership with people with learning disabilities and
their carers to plan care.
Copies available to download from:-
o Local services should work in partnership with people with learning disabilities and http://www.iahpld.org.uk/Healthcare_final.pdf
their carers to provide care. and Easy Read version from:-
o Trust Boards should be able to demonstrate that they have effective, legal, `reasonably
adjusted’ services in place
Clinical directed enhanced services (DES) guidance for GMS contract 2008/09
Delivering investment in general practice
Specification for a directed enhanced service in England: learning disabilities
1. There is good evidence that patients with learning disabilities (LD) have more health problems and die at a younger age than the rest of the
2. The existing QOF registers do not differentiate LD by severity. There are estimated to be 240,000 people with moderate to severe LDs in
England known to social services. The DES is designed to encourage practices to identify those patients with moderate to severe LD as defined
by the same criteria used by the local authority (LA).
3. The pre-requisites for taking part in the DES are as follows:
• practices will have liaised with the LA to share and collate information, in order to
identify the people on their practice LD register with moderate to severe learning
• a practice providing this service will be expected to have attended a multi-professional education session (refer to paragraphs 13 to 15
for further information). The minimum expectation of staff attending will include the lead general practitioner (GP), lead practice nurse and
practice manager/senior receptionist. Practices may also wish to involve specialist LD staff from the community learning disability team to
provide support and advice.
4. The total investment available for this two-year DES in England is £22m per year for 2008/09 and 2009/10.
Details of the DES
5. Practices will be expected to provide an annual health check to patients on the local authority LD register. Practices are recommended to use
the Cardiff health check protocol or a protocol as agreed locally with the PCT.
6. Further information on the Cardiff Protocol is available at: http://www.rcgp.org.uk/PDF/clinical_Welsh_Health_Check_newA.pdf
7. As a minimum, the health check should include:
• a review of physical and mental health with referral through the usual practice routes if health problems are identified:
- health promotion
- chronic illness and systems enquiry
- physical examination
- behaviour and mental health
- specific syndrome check
• a check on the accuracy of prescribed medications
• a review of coordination arrangements with secondary care
• a review of transition arrangements where appropriate.
8. Health checks should integrate with the patients’ personal health record or health action plan. Where possible, and with the consent of the
patient, this should involve carers and support workers. Practices should liaise with relevant local support services such as social services and
educational support services in addition to learning disability health professionals.
Payment and validation
9. Payment will be based on a report to the PCT at the end of each year (31 March) on the number of patients on the health check LD register
who have received the health check.
10. Once a practice has agreed the health check LD register with their PCT, it will receive a £50 aspiration payment for each patient on the
11. The reward for each health check will be £100.
12. The cost of aspiration payments will be deducted from payments made for the health checks. If practices do not complete enough health
checks to fund the full cost of their aspiration payment, the PCT will recover any overpayment made as result, in line with normal practice.
Multi-professional education session – training for primary healthcare staff
13. Further information regarding training for primary healthcare staff, together with good practice examples, is available on the Valuing People
website at: http://valuingpeople.gov.uk/dynamic/valuingpeople144.jsp
14. A framework for the content that the training should include is:
• understanding of learning disabilities
• identification of people with learning disabilities and clinical coding
• understanding of the range and increased health needs associated with learning
• understanding of what an annual health check should cover
• information that should be requested prior to an annual health check
• understanding of health action plans
• understanding and awareness of 1:1 health facilitation and strategic health facilitation
• ways to increase the effectiveness of health checks
• overcoming barriers including :
o communication needs
o using accessible information and aids
o physical access
o social and cognitive attitudes
o values and attitudes
• collaborative working including:
o working in partnership with family carers
o the role of the community learning disability team
o the role of social care supporters
o the role of other health care professional and services
• experiences and expectations
• Disability Discrimination Act and the Disability Equality Duty
• resources – local contacts, networks, practitioners with special interest and information.
15. The training should be provided by the strategic primary health care facilitator for people with learning disabilities (where PCTs have invested
in this support) and / or members of the local community learning disability team (this may need to be commissioned via the local specialist NHS
trust) in partnership with self advocates (as paid co-trainers). Each PCT should use their internal procedures to approve the content of the
training for their locality using the framework provided as guidance.
References and Acknowledgments
http://valuingpeople.gov.uk/dynamic/valuingpeople144.jsp download - Top 10 Tips for Consultations with people with learning disabilities.
Beange, Lennox and Parmenter (1999) In Thomas, C., Corbett, J., Prior, M., and Robson. R. (2002). A Resource Pack for Health Facilitators,
West Midlands Regional Learning Disability Project 2002.
DOH (1995) Disability Discrimination Act. HMSO: London.
Department of Health (1999) Once a Day. NHS Executive : London .
Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century. Department of Health: London.
Department of Health (2001) Seeking Consent: working with People with Learning Disabilities. Department of Health: London.
Department of Health (2002) Health Action Plans: What are They? How do you get one? Department of Health: London.
Department of Health (2005) Mental Capacity Act. Department of Health: London.
Welsh. R., Wild. K., Moulster. G., Carter, C., Staples, S. (2001). Helping People with Learning Disabilities in Primary and Secondary Care: A
Resource Pack for Health. West Hampshire NHS Trust.
Elliott, J. Hatton, C and Emerson, E. (2003) The Health of People with Learning Disabilities in the UK: Evidence and Implications for the NHS.
Journal of Integrated Care No 11, 9 -17.
Thinn. K., Mlele, T. and Masden, E.(2000) In: Thomas, C., Corbett, J., Prior, M., Robson, R. (2002). A Resource Pack for Health Facilitators.
West Midlands Regional Learning Disability Project 2002.
World Health Organisation (1992) The ICD -10 Classification of Mental and Behavioural Disorders: Clinical Descriptions and Diagnostic
Guidelines. World Health Organisation: Geneva.
Kent, A. and Hood, M., Mental Capacity Act (2005) Best Interest Pathway, Humber Mental Health Trust, 2007.
Kent, A. and Hood, M., Mental Capacity Act (2005) Decision Makingt Pathway, Humber Mental Health Trust, 2007.
Salford Primary Care Trust, Action to take if an adult with a Learning Disability is refusing immediate life saving/emergency treatment.
(Guidance for GPs and Paramedics), September 2007.
http://valuingpeople.gov.uk/dynamic/valuingpeople144.jsp (Primary Healthcare information – list of publications)
http://valuingpeople.gov.uk/dynamic/valuingpeople118.jsp (Health/Valuing People information – list of publications)
Shropshire South Staffordshire and Shropshire
Healthcare NHS Foundation Trust Mencap Helpline
Carers Helpline Headquarters 020 74540454
Carer Support Services (ALD) 01785 257888
01743 341995 Patient Advice Liaison Service Network
Community Living Team Telford & Wrekin
01743 244908—Shrewsbury VISS
Carers Link Officer– Carers Contact (Visual Interpreting and Communication
Joint Learning Disability Team Centre (T&W) Service in Shropshire)
Shropshire 01952 240209 01743 440060
Community Living Team MIND
Taking Part – Shropshire 01952 381420– Telford & Wrekin 01743 36864
Joint Learning Disability Team (Telford National Society for Epilepsy
South Staffordshire & Wrekin) 01494 601400 (national call rate)
01952 381420 www.epilepsynse.org.uk
People First (Staffordshire)
Taking Part One Stop Shop Challenging Behaviour Foundation
ASIST (Advice Services in 01952 597434 0845 602 7885
01782 845584 Autism West Midlands Helpline
0121 450 75 75
CONTACT DETAILS LEARNING DISABILITY SERVICES:–
Head of Service COVERING CONTACT
Service Managers: AREA(S): PHONE NO:
HEALTH ACTION PLANNING LEADS:–
NAME AREA ROLE
PARTNERSHIP BOARD LEAD OFFICERS
AREA CONTACT ADDRESS