Learning disabilities

Communication with patients

Contents

Introduction

This page contains simple tips and tools to help improve your communication with patients who have learning disabilities, and looks at some reasonable adjustments you could make to your practice, like allowing more time for your consultations, and making information more accessible.

There are many different ways you can improve your communication with patients with learning disabilities.  From using simple tools like talking mats, on-line videos  or pictures and photos, to practising intensive interaction with your patient to build trust and so improve this and future consultations with them. The smallest changes can dramatically improve the effectiveness of your consultations with patients who have learning disabilities.

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Communication tools

Our experts suggest a number of methods for improving your communication with people who have learning disabilities.

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Learning points (from the Interactive learning section)

  • Talk directly to the patient, bringing the carer into the conversation with the patient’s permission when clarification is necessary
  • Move close to the patient and their carer, make eye contact, try to build rapport and establish trust
  • Tell the patient and carer what is going to happen in the consultation
  • Allow more time for consultations with patients who have learning disabilities – this may sometimes be the only reasonable adjustment necessary
  • A physical examination must be carried out if indicated – don’t avoid it because of difficulties in communication or assessing capacity. Instead try to gain the patient’s trust and persuade them to consent to an examination.

You can see these points brought to life in the Interactive learning section.

From the GMC's guidance

“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, para 21)

Simple communication tips and tools

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Simple communication tips

Our experts give some examples of simple techniques you can use right away to improve your communication.

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 “People with learning 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.”


Dr Matt Hoghton

a. Books beyond words

Whether or not your patient can read, it can help to establish rapport by looking at pictures together - try the books beyond words series (produced and published by Beyond Words who also provide regular training workshops around the UK) which includes books about specific conditions, disease prevention and going to hospital.

This approach to talking about health can also help to reduce your patient's anxiety by taking the focus away from them, at least initially, and talking about what they think is happening in the pictures.

b. Other visual aids: Talking mats, pictures and photos

You could print out our Jargon Buster (pdf) and keep it to hand for whenever you see a patient who has a learning disability. 

We developed the Jargon Buster with speech and language therapist Viki Baker and her colleagues Lin Wright and Sarah Stirling.  It contains alternative phrases to commonly-used medical terms, as well as photos and pictures and other ideas to aid communication.

You can see service users and their supporters using talking mats in the video with Geraldine McCluskey below, and also in the Six lives video in the Patient perspectives section.

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Talking mats

Geraldine McCluskey demonstrates how a talking mat can be used as a communication tool.

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Some tips for communicating

Dr Pepera talks about the importance of checking for understanding and discusses how visual aids can aid communication.

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Speaking directly to the patient

Dr Akuffo talks about the importance of speaking directly to the patient

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c. Easyread

Depending on your patient's level of understanding you may be able to use easyread booklets or leaflets during the consultation, which perhaps the patient can keep afterwards. The easyhealth website has lots of useful leaflets you can print, and also audio recordings of the leaflets, and videos about a number of conditions.  You could watch these with your patient, or tell them and their carer about the website and suggest they watch particular videos at home.

d. Health passports

Health passports (also called patient passports or hospital passports) are being used by a growing number of patients who can find it difficult to communicate.  There are various formats but the essence of a health passport is that it contains important information about the patient and – crucially – is owned by the patient. 

This means that wherever they go healthcare staff are aware of the patient’s likes and dislikes, preferred communication methods as well as clinical information about current medication, allergies, past operations, medical history and so on.  There is no doubt that health passports have saved lives as well as helping doctors and other healthcare staff to provide better care for patients.

There are links to patient passports on the communication page of the Resources section.

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Patient passports

Jim Blair gives two examples illustrating how hospital passports can save lives.

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"As soon as you’ve made that connection, you will change your attitude and you will do what it takes to ensure that person has the best care."


Dr Matt Hoghton

e. Intensive interaction

For people with more severe learning disabilities, in particular those with profound and multiple learning disabilities (PMLD) communication can present more of a challenge.  But even though people with PMLD may not use spoken language, there are other ways in which you can communicate and so build rapport and dramatically improve your consultations with them. Intensive interaction is a technique which has been used with people with PMLD since the 1980s and is based on the first conversations between mothers and infants. Phoebe Caldwell, an expert practitioner in intensive interaction, describes it as ‘finding a way of using people’s body language in order to get into conversation with them…all the behaviours, all the sounds they make…movements, particularly the rhythms…[you] tune into these in order to get emotional engagement’.

"You can see their world expanding as they become more trusting."


Phoebe Caldwell

Practitioners have found that using intensive interaction with people with PMLD has markedly reduced ‘challenging behaviour’ and enabled previously isolated people to become more engaged with others.

In the doctor-patient consultation, intensive interaction can help to establish a trusting relationship with patients with PMLD, involve them in their care and perhaps make them more likely to comply with examination. And as Phoebe Caldwell says ‘You don’t have to be a real expert. We just have to learn to let go of our own agendas and work off what the [patient] is doing.’

Have a look at some of the videos on Phoebe Caldwell’s website which show her practising intensive interaction.

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How to build rapport

Dr Matt Hoghton suggests a way to build rapport with patients who may not have verbal communication skills. 

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From the GMC's guidance

“You must work in partnership with patients, sharing with them the information they will need to make decisions about their care” (Gmp 49)
“Good doctors work in partnership with patients and respect their rights to privacy and dignity. They treat each patient as an individual.” (Gmp 2) 

Reasonable adjustments

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Example of reasonable adjustments

Baroness Hollins explains how making reasonable adjustments can make a real difference to a patient’s experience.

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From the GMC's guidance

“You should make sure that arrangements are made, wherever possible, to meet patients’ language and communication needs.” (GMP paragraph 32)

a. Allow more time for consultations

Whatever tools or techniques you use, it is likely you will need more time for the consultation to ensure that you and your patient communicate as effectively as possible.

If you allow more time for your first consultation with a patient who has a learning disability, you may not need to make this adjustment again for future consultations. Once you’ve established a trusting relationship with your patient you can build on that each time you see them.

b. Make information accessible

There is a wealth of accessible information on the internet about medical conditions, treatment options, medication and side effects and legislation.  See websites such as:

  • easyhealth which has leaflets and videos about health related issues
  • University of Birmingham for easyread leaflets and recordings (audio and video). 

Using any of the tools described at the top of the page (talking mats, books beyond words etc) can make the information you give to patients more accessible. 

Whether or not your patient can read, if you look at this information together it can both enable understanding and build trust and rapport.

Whatever methods you choose to use with your patient, always check that they have understood what you’re saying, particularly when discussing their condition and the treatment options.  See the sections on Consent and capacity for more information.

c. Give patients (and carers) information in advance

If you have a planned consultation with a patient, you could prepare them for the consultation.  You could perhaps send them some information in advance so that they have time to read it and come prepared to the consultation with any questions and concerns they may have. 

Or it may be helpful simply to let the patient know, in an accessible way, what is likely to happen at the consultation: what questions they will be asked, whether they are likely to be examined or have any other investigations.

On a video on the Communication with patients page of The issues section, Patricia Charlesworth describes how she is fine having a blood test provided that she knows about it in advance.  But that one time when she was not prepared, she was so distressed that she needed to be restrained.

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Another reasonable adjustment: desensitisation

Geraldine McCluskey describes how the healthcare team at a GP surgery made adjustments for an autistic patient to attend.

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