A learning disability is a reduced intellectual ability and difficulty with everyday activities. This affects someone for their whole life. How much support someone needs is unique to the individual.
Every patient is unique
Someone with a mild learning disability might only need support with bigger things. Help with looking for a job, for example.
Someone with profound multiple learning disabilities may need full-time care. They might need support with every aspect of their life.
Good doctors do their best to make sure all patients receive good care and treatment that will support them to live as well as possible, whatever their illness or disability.
(Good medical practice, paragraph 2)
Separating learning disability from learning difficulties and mental health issues
Learning disability is often confused with learning difficulty or mental health problems. A learning disability is a reduced intellectual ability and difficulty with everyday activities. This disability affects someone for their whole life.
A person with a learning disability might also have a learning difficulty or a mental health problem but these are separate. Example: a person with Down’s syndrome who is also dyslexic and has bouts of depression.
Specific learning difficulties affect the way someone learns and processes information. They are neurological, usually run in families and aren't related to intelligence. They can have significant impact on education and learning. Examples: dyslexia, dyspraxia, attention deficit hyperactivity disorder.
Mental health problems can affect anyone at any time and can be overcome with treatment. This includes people with a learning disability and people without. Examples: depression, anxiety.
Ending health inequality
Many people with a learning disability face health inequalities. In general, people with a learning disability die earlier than the rest of the population.
Did you know?
People with a learning disability die around 16 years earlier than the general population.
Investigate early as people with learning disabilities often present late with serious illnesses. Carry out diagnostic tests wherever you see unexplained symptoms or physical changes.
Ask and look for signs of pain and distress regularly.
Patients with a learning disability do not have a higher pain threshold. Be proactive, prescribe pain relief or sedation as you would for other patients. Consider using a face scale to assess pain.
People with learning disabilities are vulnerable to mental health problems.
The way they present symptoms can make the assessment process more difficult. Some signs and symptoms may appear in a less typical way. Some conditions, such as autism, might disguise symptoms.
Evidence shows that people with a learning disability have poorer health outcomes than the rest of the population. But doctors don't intend to discriminate against their patients. How can healthcare workers and institutions inadvertently discriminate against their patients?
Diagnostic overshadowing (concept)
Once a diagnosis is made of a major condition there is a tendency to attribute all other problems to that diagnosis, thereby leaving other co-existing conditions undiagnosed. (Neurotrauma Law Nexus)
In the context of learning disabilities this means that ‘symptoms of physical ill health are mistakenly attributed to either a mental health/behavioural problem or as being inherent in the person's learning disabilities’ (Emerson and Baines, 2010).
If a patient has difficulty communicating or understanding it's easier to miss things. Take care to apply the same diagnostic principles you would with other patients. This may mean finding extra time for communication.
If you assess diagnose or treat patients, you must:
- adequately assess the patient’s conditions taking account of their history... views and values; where necessary examine the patient
- promptly provide or arrange suitable advice, investigations or treatment where necessary
- refer a patient to another practitioner when this serves the patient’s needs.
(Good medical practice, paragraph 15)
Attitudes and assumptions
Professor Baroness Sheila Hollins has an adult son with a learning disability. Here she talks about the discrimination he faced in hospital.
Much of the time discrimination is unintentional. ‘I think all of us have prejudices but we perhaps don’t know what they are’, says Baroness Hollins.
You might not have had the chance to get to know a person with a learning disability. Take care not make quick judgements about a patient's quality of life. Consider hosting staff training sessions led by people with a learning disability.
You must not unfairly discriminate against patients by allowing your personal views about their disability to affect your professional relationships or the treatment you provide or arrange.
(Good medical practice, paragraph 59)
People with a learning disability have often suffered as a result of institutional discrimination. Especially people with profound and multiple learning disabilities (PMLD) or otherwise complex needs.
This form of discrimination happens when policies or procedures don't consider people's needs or aren't adjusted to help someone access care. For example, if a hospital sends out an appointment reminder letter to a patient who can't read.
Aiming for equality doesn't always mean treating everyone the same.
Tailor your practice
Doctors should always tailor their practice to the patient in front of them. Sometimes this only means subtle changes. For a patient with a learning disability always consider what changes you could make to make your practice accessible.
How can reasonable adjustments change things for patients?
How changing your practice can make a real difference to a patient’s experience? Dr Geraldine McCluskey shares her experience.
Five adjustments that can make a big difference
Allow more time for consultations
This gives you and your patient the chance to communicate as effectively as possible. You might only need to do this for your first consultation. Once you establish a trusting relationship with your patient you can build on it each time you see them.
Make information accessible and try to provide it in advance
There is a lot of accessible-format information available online. Including information on medical conditions, treatment options, medication and legislation. If you can, tell your patient what is likely to happen at the consultation. What questions will you ask? Will you examine them or make any other investigations? Send the patient information in advance, if you can, so they can come with any questions or concerns.
Check for understanding
However you explain things, always check that your patient has understood. This is particularly key when discussing their condition and the treatment options. Not sure about their understanding? Our mental capacity page can help with assessing capacity.
Offer the first or last appointment of the day if possible
Waiting in a healthcare environment can be stressful for anyone. Help manage that stress by reducing a patients’ waiting time. There may also be fewer people around at these times.
Demonstrate a physical examination on yourself or a carer
Show a patient what you plan to do and ask their permission before touching them
- Talk directly to the patient
- Bring the carer into the conversation with the patient's permission
- Tell the patient and carer what is going to happen in the consultation
Carers can be a valuable source of information for healthcare staff. Particularly family carers, who will know the patient well. But it's always critical that you carry out an objective assessment of your patient. But don't focus your conversation on the carer, make sure you communicate with your patient directly.
How a carer can help
A carer might:
- know the patient's preferred method of communication
- give insight into how a patient usually behaves when well
- know the patient's likes and dislikes which can help you build trust and rapport
- know of any medication the patient's taking
- know of the patient's medical history
- remember the details of the consultation and be able to explain it again to the patient later
Speak to those close to the patient... about the best ways of communicating with the patient
(Consent, paragraph 68)
Using a carer during a consultation
Identifying concrete examples
A carer may have specific examples from the patients daily life which can help illustrate an idea. For example, levels of pain, e.g. 'Is it worse than when you had tonsillitis?'
Help with physical examination
A carer can be a reassuring presence. It might put an anxious patient at ease enough to cooperate with an examination. You can ask a carer to demonstrate how you will touch the patient during an external examination. This would show the patient that the examination isn't painful or scary and they may then let you carry it out.
Help with gentle restraint
If your patient lacks mental capacity they can't refuse to consent to treatment. So if you think a physical examination or a treatment is necessary you must find a way to give it. Your patient may be uncooperative when distressed or in pain. If you can't persuade them to agree to an examination, a carer may be able to help by gently restraining them. Our mental capacity page has more about this.
How a carer can be unhelpful
Answering for the patient
This may happen even if you're talking to the patient directly. This habit can develop unconsciously over time, particularly in parent carers. Acknowledge the carer and reassure them if they have any concerns, then focus on communicating with your patient.
Making decisions for the patient
This is a particular challenge for parent-carers of younger adults. They'll need to come to terms with the fact that they no longer make decisions on behalf of their son or daughter. Parent-carers can't give consent for their child to receive treatment once they reach the age of 18.
Unsure about a patient's capacity to make decisions? More on mental capacity.
Passing on assumptions, not facts
Not all carers will know the patient well. A carer might be new and even those who know the patient well might still make wrong assumptions.
Make your own objective assessment of the patient's condition. Always carry out an examination, if necessary. Don't avoid it because the patient seems unwilling or the carer says it's unnecessary.
Hear from a doctor who’s a carer
Dr Pepera, a family carer herself, considers how carers might not be as helpful as they intend.
Recognising the carer’s limitations
Dr Hoghton highlights how helping the carer can be the first step to helping your patient.
Recognise a carer's limitations
Acknowledge the carer and their concerns; be polite and considerate towards them
Many family carers will be anxious themselves. Their loved one is ill. They may also have had a negative experience with a healthcare professional in the past. By simply showing respect for the patient, you may reassure an anxious carer.
Check if family carers are aware of the free support systems available
- finding a local group through NHS choices postcode search
- calling Carers Direct (free-from UK landlines and mobiles on 0808 802 0202)
- using the support of an online community such as Scope's Online community
You might want to ask the carer if they're receiving support for any medical problems of their own. Suggest that they make an appointment with you or a colleague.
- Talk directly to your patient and make eye contact, even if the carer has addressed you.
- Allow more time for a consultation with a patient with a learning disability.
- Visual aids and other tools are available to support communication with your patient.
Everybody has their own way of communicating. There are many ways to improve your communication with patients' with learning disabilities. From simple tools, like talking mats to using intensive interaction with your patient. The smallest changes in your communication can dramatically improve the effectiveness of your consultation.
You must listen to patients…You must give patients* the information they want or need to know in a way they can understand.
(Good medical practice, paragraph 31–32)
* 'patients' here includes those people with the legal authority to make healthcare decisions on a patient’s behalf.
Clear and simple communication
Take the time and be really clear, this will help your patient understand and be understood. Try to:
- talk directly to the patient and make eye contact
- avoid sitting a long way from the patient and their carer
- work out how much understanding someone has at your first meeting. Then talk to them in a way that they can understand
- tell the patient (and carer, if present) what is going to happen in the consultation
- allow more time for consultations. This might be the only change you need to make
The language you use and how you use it is key. Here are some resources for use in practise:
Respect and rapport
Show respect to a patient with a learning disability by addressing them directly.
Speak to the patient, even if it seems that they may not be able to communicate verbally. You should do this even if it’s the carer that's addressing you. This shows your patient that you respect them and value them as an individual.
Everyone has a right to two way communication for its own sake and on their own terms. Not just functional, demand-driven communication.
You must treat patients as individuals and respect their dignity and privacy.
(Good medical practice, paragraph 47)
You should check whether the patient needs any additional support to understand information, to communicate their wishes, or to make a decision…make sure, wherever practical, that arrangements are made to give the patient any necessary support…
(Consent, paragraph 21)
Books beyond words
Looking at pictures together can help build rapport, this can be true whether or not your patient can read. Talking about health indirectly can also help to reduce your patient's anxiety, it takes the initial focus away from them.
- books about specific conditions (eg epilepsy, diabetes)
- books explaining how to examine yourself
- books about what happens when you go to hospital.
How to use Talking mats
Geraldine McCluskey explains how to use this tool. It uses pictures to help patients focus on a topic and share their thoughts and feelings on it.
Easyread and watch
You can use Easyread booklets or leaflets to explain things during the consultation. And the patient can keep them to review again at home. There are videos on the for your patient to watch. Share the web address with them and their carer.
A health passport is owned by the patient and contains important information about them. They're sometimes called patient passports or hospital passports. They're used by a growing number of patients who can find it difficult to communicate.
Health passports might include a patient’s:
- likes and dislikes
- preferred communication methods
- clinical information like current medication, allergies, past operations, medical history, etc.
You must work in partnership with patients, sharing with them the information they will need to make decisions about their care
(Good medical practice, paragraph 49)
Intensive interaction is a technique which has been used with people with profound multiple learning disabilities since the 1980s and is based on the first conversations between mothers and infants.
Intensive interaction markedly reduced ‘challenging behaviour’ in people with profound multiple learning disabilities. It's enabled previously isolated people to become more engaged with others.
Intensive interaction can help to establish a trusting relationship with patients. It can help involve them in their care and make them more likely to engage with examination.
Why does challenging behaviour happen?
Speech and Language Therapist Stevie Newman explains why challenging behaviour can occur.
Some patients with a learning disability struggle with communication. They may respond to a communication breakdown with challenging behaviour. This might be aggression directed at others or at themselves or disruptive actions.
Either the person does not understand, or is not being understood. For example; they're in pain but can't express it verbally.
Take the time to find the best way to communicate with your patient, and to allow them to communicate with you.
When a person feels able to express themselves and listened to, they feel valued. This makes it far less likely that they will behave in a challenging way.
Someone who does not have verbal language skills may be able to communicate in other ways. For example; the rhythmic movements or sounds used in intensive interaction.
'Many people with profound and multiple learning disabilities do not communicate using formal communication like speech, symbols or signs.
But this does not mean that they can’t communicate.'