Into practice: Tips for doctors
On this page Dr Matt Hoghton* gives his tips for doctors consulting with a person who has a learning disability.
In order to deliver dignified, respectful and compassionate care you will need to take extra time.
Arranging the appointment to see you as a doctor may have required considerable effort for the person with a learning disability and their carers. Try to offer double the usual appointment, outpatient time or consulting time and be mindful that many carers will have other commitments. People with learning disabilities say that negative or unhelpful attitudes of health care workers deter or stop them from seeking help.
Communicate with the person with a learning disability first and involve them as much as possible.
People with intellectual disabilities need to be encouraged and empowered to speak for themselves. Try and work out how much understanding someone has at your first meeting, and talk to them in a way that they can understand.
When you meet a person with intellectual disabilities who is unable to communicate, ask the supporter if they have any special ways in which they communicate. Use these special ways if you can.
Also if there are relevant pictures that the person would recognise, use them. People with a learning disability are more likely than the rest of the population to have an impairment to communication and therefore require special consideration.
Use language that the client understands at a simple level, or use a communication aid, i.e. pictures or symbols.
Direct open ended questions to the person and only check out with a carer if something is not clear. Try to maintain eye contact with the person with a learning disability.
Communicating clearly with speech
- Only use one or two information words in a sentence, and break between each sentence – e.g. have you got a pain?....... do you want some medicine?
- Use everyday words wherever you can – rather than medical terms. Use very literal language and use direct rather than abstract phrases e.g. 'have you got a pain?' rather than 'how do you feel?'. Have only one idea in a sentence.
- Don’t talk too fast, and give the person plenty of time to respond to what you’ve said – it takes time for many people to process the words they hear.
- Check back that the person has understood what you have said – ask them to tell you what they think you said.
- Use very literal language – use direct rather than abstract phrases, idioms or metaphors.
- Use gestures when speaking –gestures and facial expressions give visual clues about the meaning of what you are saying.
- Use pictures, symbols or objects in the environment to support what you are saying.
- Think about the environment. If it is too noisy and busy, the person may be distracted and find it harder to concentrate on what you are saying.
- Where possible, take information from the patient’s carers about how much they understand, how they communicate and how to communicate with them.
Supporting people with visual impairment
- Make handwriting more legible by choosing a dark felt tip pen and write neatly using thicker strokes.
- Show the person where the toilet, call button, etc. are, rather than giving directions.
- Encourage people to bring in their usual aids.
Supporting people with hearing loss
- Face the person directly – if you look away the deaf person cannot see your lips.
- Speak clearly and at a normal pace – do not shout.
- Use gestures to help explain what you are saying – use gesture, point, mime to help explain what you are saying e.g. show a cup and ask what they want to drink.
- Make sure you have good light on your face – so the person can see your features and read your lips easily.
- Use whole sentences rather than one word replies – lip reading is 70% guess-work and many words look the same. Using sentences gives contextual clues.
- Be patient – if you are asked to repeat something, try changing the sentence slightly, it may make it easier to understand.
- Do not give up – if you cannot make yourself understood then write it down or draw what you mean.
- If the person is a sign language user, they will probably still expect to have to lip-read your reply – very few hearing people sign, and deaf people are used to communicating with hearing people.
- Provide any information in an accessible format.
Demonstrate any examination or procedure before you perform it.
As with anyone people with a learning disability may get anxious in a an unfamiliar health care setting. By demonstrating the examination first you may reduce the anxiety and ensure the examination is complete. A small amount of sedation may be helpful in venesection if the person is needle phobic.
Make reasonable adjustments to ensure access to mainstream health care.
People with a learning disability experience health inequality, experience a wider range of health problems than the general population and may by socially excluded.
People with a learning disability have a right to access health services and these should be provided within the current legislative framework and in a way which upholds the principles of inclusion and respect, and conforms to professional standards.
Access to health care may rely on mastery of modern communications in order to book appointments. Barriers to appropriate and timely access to health services operate both outside and within health services.
Investigate early as people with learning disabilities often present late with serious illnesses.
Ensure proper diagnostic tests are carried out wherever unexplained symptoms or physical changes are noted. Consider screening tests such as C reactive protein to help detect acute illness.
Avoid diagnostic overshadowing.
Do not assume any changes in behaviour or deterioration are caused by the learning disabilities and do not make assumptions or judgements about the person. Try to see the person not the disability.
Ask and look for signs of pain and distress regularly. Patients with a learning disability do not have a higher pain threshold.
Pain relieving medication or sedation should be prescribed according to the doctor’s normal expectations of the needs of other patients with similar illnesses. As a doctor you need to be proactive and should not wait to be asked. Use a Face scale to assess pain and consider using a trial of a simple analgesic in people with profound communication difficulties.
Consider mental health issues after excluding a physical cause.
People with learning disabilities are vulnerable to mental health problems, particularly how they present, and are assessed and treated. The presentation can make the assessment process more difficult. Some signs and symptoms may appear atypically or be overshadowed by conditions such as autism.
Some clusters of symptoms may suggest particular condition in an individual, though they do not meet full diagnostic criteria. This may result in the doctor making a diagnose of an unspecified disorder rather than make a more specific diagnosis – for example, diagnosing ‘personality disorder unspecified’ rather than an exact category, or ‘psychotic illness’ instead of a subtype of schizophrenia.
Involve people with learning disabilities in decisions, and understand the law around capacity and consent.
You must assume everyone has capacity until you demonstrate they do not. CURB is a mnemonic developed to help doctors assess a patient's capacity to make an appropriate decision.
C - Communicate. Can the person communicate their decision?
U - Understand. Can they understand the information you giving them?
R - Retain. Can they retain the information given to them?
B - Balance. Can they balance or use the information?
For more information about carrying out an Annual Health Check, see Dr Matt Hoghton's document: A step by step guide for GP practices: annual health checks for people with a learning disability.
* Dr Matt Hoghton is the Royal College of General Practitioners’ Clinical Champion for Learning Disabilities, RCGP Clinical Innovation and Research Centre (CIRC). Matt is also a General Practitioner at Clevedon Riverside Group, North Somerset, LD Clinical Champion NHS North Somerset and lead Investigator in Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD Norah Fry Centre Bristol University).