During the COVID-19 pandemic, we wrote and published guidance about caring for people with a learning disability and autistic people. Three years on, we have heard that the guidance remains helpful and important for your practice on the front line beyond the pandemic, but that it also needed to be updated.
As health professionals, we all have responsibilities to ensure that people with a learning disability and autistic people receive good care.
An estimated 2.5% of the population in England has a learning disability (Valuing People – A New Strategy for Learning Disability for the 21st Century, 2001) and the incidence of autism in England is estimated to be approximately 1 to 1.7% of the population (Baird et al, 2006). A significant number of autistic people also have a learning disability. People with a learning disability and autistic people access all types of healthcare at every stage of their lives. Research shows that, generally, people with a learning disability have higher rates of death from avoidable causes than for the general population, (49% vs 22%) and die at a younger age (LeDeR Report 2021). There is also evidence that premature mortality is higher for autistic people compared to the general population (Hirvikoski et al, 2016) and that autistic people have higher rates of health problems throughout childhood, adolescence and adulthood including a higher rate of mental health diagnoses (Lai et al, 2019).
Throughout daily clinical practice, you will therefore be likely to see patients with a learning disability or autistic people and this guide aims to offer advice on day to day management of their health.
Supporting people with a learning disability and autistic people
The following key points should be addressed when assessing and treating a patient with a learning disability or autistic person:
- Be aware of diagnostic overshadowing: This occurs when the symptoms arising from physical or mental ill health are misattributed to a person’s learning disability or autism leading to delayed diagnosis or treatment. People with a learning disability and autistic people have the same illnesses as everyone else, but the way that they respond to or communicate their symptoms may be different and not obvious.
- Pay attention to healthcare passports: Some people with a learning disability and some autistic people have a healthcare passport giving information about the person and their health needs, preferred method of communication and other preferences. Ask the person or their accompanying carer if they have one of these.
- Ensure that clinical decisions around care and access to treatment are made on an individual basis: People should not have a DNACPR (do not attempt cardiopulmonary resuscitation) recorded on their clinical record simply because they have a learning disability or are autistic. Every person has individual needs and preferences which must be taken account of, and they should always have high quality standards of care. It is also important not to make generalised judgements or assumptions about people’s vulnerability or frailty based on their dependence on others for support in daily living.
- Listen to parents and carers: Families and carers have a wealth of information about the individual and how their health has been, including any comorbidities and the medication that the person is taking. Listen to them as well as the person you are caring for. They know the person well and how to look after them when they are not in hospital. They also know how the person’s current behaviour may differ from usual, as an indication that they are unwell. The family or carer may have short videos of the person to give you an idea of their usual self. Remember that the carer they come into hospital with may not be their usual carer at this unusual time. You may wish to talk to their usual carer as soon as is practicable.
- Make reasonable adjustments: It is a legal requirement to make reasonable adjustments to care for people with a disability under the Equality Act (2010). Getting the reasonable adjustments right is important to help you make the correct diagnostic and treatment decisions for an individual. You can ask the person and their carer or family member what reasonable adjustments should be made. Adjustments aim to remove barriers, do things in a different way, or to provide something additional to enable a person to receive the assessment and treatment they need. Possible examples include allocating a clinician by gender, taking blood samples by thumb prick rather than needle, providing a quiet space to see the patient away from excess noise and activity.
- Communication: Communicate with and try to understand the person you are caring for. Check with the person themselves, their family member or carer or in their hospital or communication passport for the best way to achieve this. Use simple, clear language, avoiding medical terms and ‘jargon’ wherever possible. Some people may be non-verbal and unable to tell you how they feel. Pictures may be a useful way of communicating with some people, but not all.
- Understanding behavioural responses to illness, pain and discomfort: A person with a learning disability and some autistic people may not be able to articulate their response to pain in the expected way: for example, they may say that they have a pain in their stomach when the pain is not there; may say the pain is less acute than you would anticipate; or not say they are in pain when they are. Some may feel pain in a different way or respond to it differently: for example, by displaying challenging behaviour; laughing or crying; trying to hurt themselves; or equally may become withdrawn or quiet. People who use a wheelchair may have chronic pain. Understanding what is ‘normal’ for that person by talking to them, their family and carers, is crucial to helping with assessment and diagnosis. You can use pictures to help establish whether a person is in pain and where that pain is.
- Mental Capacity Act: People with a learning disability and autistic people should be assumed to have capacity in line with the principles of the Mental Capacity Act. Assess their capacity to make a decision about their treatment or care in line with the person’s communication abilities and needs and follow the principle of the Mental Capacity Act in making appropriate efforts and adjustment to enable decision making wherever possible. Remember that capacity is time and decision-specific. Refer to the MCA Code of Practice for guidance.
- Ask for specialist support and advice if necessary: Your hospital learning disability team or liaison nurse can help you with issues of communication, reasonable adjustments, and assessment of pain. You may also want to make contact with your local community learning disability team if your Trust does not have a learning disability liaison nurse.
- Training on how to support people with a learning disability and autistic people: The Oliver McGowan Mandatory Training on Learning Disability and Autism is the government’s preferred and recommended training for health and social care staff. Access the e:learning on: The Oliver McGowan Mandatory Training on Learning Disability and Autism.
- Mental wellbeing and emotional distress: It is estimated that 40% of people with a learning disability experience mental health problems (Mental health problems in people with learning disabilities: prevention, assessment and management) and research suggests autistic people may be more likely to experience depression than non-autistic people (Depression (autism.org.uk).Change in routine can have a big effect on people’s emotional and mental wellbeing. A hospital setting may make people with a learning disability and autistic people more anxious or lead to adverse behaviours, such as hurting other people, hurting themselves or damaging property. Do not assume that this is an indication of mental illness and do your best to work with the person who is unwell, their carer or family member to find out how best to keep them calm and relaxed.
- The Disability Distress Assessment Tool (DisDAT) is based on the idea that each person has their own ‘vocabulary’ of distress signs and behaviours.
- Non-Communicating Adults Pain Checklist (NCAPC) is an 18-item checklist that helps you assess chronic pain in non-communicating adults.
- Wong and Baker’s FACES Pain Rating Scale uses pictures of faces to help people communicate pain intensity from ‘no hurt’ to ‘hurts worst’.
- Information on the Mental Capacity Act:
- NHS guide to the Mental Capacity Act
- Mencap guide to the Mental Capacity Act
- NHS information on do not attempt cardiopulmonary resuscitation decisions Information on the LeDeR programme:
- LeDeR – About LeDeR
- Action from learning report 2021/22
Publication reference: PRN00296