Ten questions about caring for people with a learning disability

Every doctor, whatever their specialty, will encounter a patient with a learning disability at some point in their career. With an estimated 1.4 million people with a learning disability in the UK, most doctors will provide care for at least one patient each week.

But not every doctor will have had the chance to develop all the skills necessary to do their best for these vulnerable patients. Taking the time to develop your communication skills, think of ways to maximise patients’ capacity, and increase your confidence to apply capacity legislation will help you deliver better care for all your patients.

1. What is a learning disability?

Mencap (a leading voice of learning disability in England, Wales and Northern Ireland) defines a learning disability as:

‘a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life’.

The Mental Welfare Commission in Scotland agrees:

‘People with learning disabilities have a significant, lifelong condition that started before adulthood (age 18) that affected their development and which means they need help to understand information, learn skills and cope independently.’

With the right support, people with a learning disability can live full, happy and – for many – independent lives, and make a meaningful contribution to our communities.

Watch Mencap’s two-minute video to find out for people with a learning disability and their families.

2. I want to examine my patient or perform a procedure: can they give – or refuse – consent?

Most people with a learning disability have capacity to make routine decisions about their healthcare if they’re given the right support. Patients can consent to examination, investigation or treatment without having a detailed understanding of the purpose and benefits.

Most patients with a learning disability will consent to an examination or procedure if you:

  • explain what you’re going to do, without jargon, and why in a way your patient can understand; and 
  • ask permission before approaching or touching your patient.

Maximise your patient’s capacity by communicating and presenting information in a way they understand, and supporting them to make a decision.

Our mental capacity decision support tool will guide you through the steps to take if you still doubt your patient’s capacity to make a decision about their care.

Shannon’s case study explores issues around consent, capacity, and complying with legislation when treating patients with a learning disability.

3. How can I make my patient feel more at ease and willing to cooperate with an examination?

Supporting your patient to understand why you want to examine them can increase the likelihood they’ll agree to it.

Show them what you want to do using pictures in books or online, like . This may help you talk with your patient about a range of medical procedures so they know what to expect. Books beyond words is also available as an app.

Ask yourself the following questions if your patient is reluctant to cooperate:

  • Have I explained why I feel the treatment or investigation would be the best option for them?
  • Can I reassure them about discomfort, pain and side effects?
  • Have I explored whether my patient has a fear of something that could be dealt with or avoided?
  • Do they understand the implications of refusal?

An anxious patient may be reassured by having a family member or friend with them. You could ask the carer carry out the examination, by instructing them where to touch the patient and what to look for. This might show your patient that it isn’t painful or scary, and they may then agree to you examining them.

Don’t fall into the trap of thinking your patient not cooperating must be a valid refusal of consent. It can’t be unless they understand the consequences of deciding not to be examined. You might need to take a bit more time or try another way of communicating to make your patient more comfortable with the idea.

If you’ve taken steps to help your patient understand the reason for the examination and the potential consequences of saying ‘no’, and you conclude they don’t have capacity to make the decision, then your decisions about what to do next must be in line with current legal and regulatory standards of good practice. 

See our mental capacity decision support tool to find out the steps you must take to provide care that is of overall benefit to your patient. The consent and capacity pages of our learning disabilities website give more detail about when and how to assess your patient’s capacity. Have a look at both the page discussing the issues and the into practice page which has good practice examples. The advice on this website is based on our guidance in Medical practice and Consent.

4. What is the best way to communicate with my patient?

Talk to your patient about the ways they prefer to give and receive information. Involve a carer or family member in the conversation if your patient is comfortable with it.

Make sure you address your patient, even if it seems they may not be able to communicate verbally, and even if their carer is talking to you on their behalf. This shows your patient you respect them, value them as an individual and helps to build rapport with them.

Our learning disabilities website suggests various methods you can use straight away, like talking mats, , and other visual aids. There is also a section which links to lots of communication resources including health or hospital passports, like this  (pdf), developed by NHS Greater Glasgow & Clyde.

These "passports" can be completed by patients and their carers to prepare for admission to hospital. They contain useful information about how best to communicate with the patient and record any requirements they have. The booklet can then be passed on to relevant clinicians and other hospital staff. They should then have all the information they need at their fingertips, even if they haven’t met the patient before.

        

5. What are my legal obligations when treating people with a learning disability?

Our consent guidance applies throughout the UK and is in line with mental capacity legislation in each jurisdiction.

We recently began a review of our guidance to make sure it’s in line with developments in medical practice and the law (including judgement) since the current edition was published in 2008. Read "Ten questions about... consent" for more information.

Our mental capacity decision support tool contains up-to-date information about capacity legislation across the UK.

As well as your legal obligations under mental capacity legislation, service providers in England, Wales and Scotland are required to make reasonable adjustments so people with disabilities are not at a disadvantage compared to those without.   

6. What reasonable adjustments can I make?

Small changes to the way you provide care to patients with a learning disability can make a huge difference to a patient's experience, as well as improving health outcomes.

More time

Taking the time to find an effective way to communicate, or to reassure an anxious patient about a procedure or investigation can be valuable. Some surgeries and clinics book double appointments for patients with a learning disability. Others set appointments at a time that best suits the patient.

Accessible information

Other adjustments can include making sure information is accessible and available in different formats. See the communication page of our learning disabilities website and the resources page for examples of different communication methods.

All interactions with patients with a learning disability must be accessible. Make sure you use easily understandable language in your letters, phone calls and face to face conversations with patients. Use our jargon buster (pdf) to help with conversations about symptoms and medication. The  may help simplify your conversations with patients about the options available and help you support your patient to make decisions about their care.

For more information, have a look at the  which came into force in England in July 2016).

Information in advance

Send information to your patient ahead of time, if it's possible, so they know what to expect at the appointment. This may help your patient prepare for their appointment with a carer or family member so they will feel more at ease when they arrive.

7. How can I care for a patient whose behaviour is challenging?

The underlying causes of challenging behaviour could be psychological, biological, social/environmental factors, or a combination of all of them. Challenging behaviour is more common in people with profound and multiple learning disabilities (PMLD) who have communication difficulties.

Consider whether your patient is in pain. Use the  (pdf) or a similar pain recognition tool to help you assess this.

If you can rule out pain, the most likely cause of challenging behaviour is frustration at either not being understood or not understanding. Scope’s webpages on challenging behaviour have handy checklists which can help you  and  challenging behaviour.

 has shown there is a much higher rate of prescribing medicines associated with mental illness amongst people with a learning disability than the general population. A patient is often prescribed more than one medicine in the same class and, in most cases, with no clear clinical justification. Researchers also found:

  • medicines are often used for long periods without adequate review; and
  • there is poor communication with parents and carers, and between different healthcare providers. 

Long-term use of these drugs can lead to significant weight gain, organ failure and, in some cases, death.

Our prescribing guidance makes clear you must not prescribe medicines for your own convenience or the convenience of other health or social care professionals. 

The Stopping Over-Medication of People with a Learning Disability (STOMPLD) pledge has been signed by the Royal Colleges of Nursing, Psychiatrists and GPs as well as the Royal Pharmaceutical Society, the British Psychological Society and NHS England. There is a  (pdf) which will support you when reviewing your patients’ medication. 

8. Can I involve the carer in the consultation?

Carers can be valuable source of information when making a diagnosis and considering options for treatment. How much to involve the carer will depend on the patient’s wishes and how well the carer knows the patient. Family members may know the patient and their medical history better than a carer employed by a residential home or a support worker accompanying a person living more independently.

A carer’s involvement can be crucial as they may know what the patient is usually like when they’re feeling well. It can be easy to make assumptions and attribute someone’s behaviour to their disability, when they may well be more animated or lucid when they’re well. Have a look on our learning disabilities website at the issues and things to bear in mind about working with your patient’s carer.

If a carer is talking to you on the patient’s behalf, make sure you address your patient directly, even if they may not be able to communicate verbally. This shows your patient that you respect them, which can be crucial in forging a trusting partnership.

9. How can I make sure everyone at my workplace has the right skills to deal with people with a learning disability?

Training sessions led by people with a learning disability can not only raise awareness of the issues and, but also change attitudes. This can help staff recognise and challenge assumptions they might be making, and reduce the risk of diagnostic overshadowing.

Mencap (England) will soon pilot free training for health professionals, involving trainers who have a learning disability themselves. Get in touch with the Mencap Health training lead to find out more.

 delivers training on communication and ways to support people with a learning disability to look after their own health.

Dr Paula Manners is part of a multidisciplinary team teaching undergraduate medical students at St George’s, University of London; a course which was praised in Sir Jonathan Michael's report, Healthcare for all. She writes about the learning disability training course she teaches with her colleagues, Gary Butler and Paul Adeline (who both have a learning disability) in the article Supporting patients with learning disabilities (pdf).

Project SEARCH is an international training programme aimed at supporting young people with a learning disability into paid employment, running at over 30 sites across the UK, including:

  • .

 has more information about the project, including case studies about people’s experience on the supported internship programme.

Finally, see  and Skills for Health’s  for all staff.

10. What are the most important things to remember?

Ask yourself…

‘What would I do for any other patient?’

…then find a way to do it, either with your patient’s consent or (if you think they lack capacity) following the steps set out in our decision support tool.

For more advice have a look at GP Matt Hoghton’s top tips and Baroness Sheila Hollins’s 5 important things to remember.

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