A medical professional wearing a white cot is sitting at a desk with a female patient with a form and a pen.

Updated guidance for health professionals caring for people with a learning disability and autism

The NHS has issued updated guidance to health professionals about caring for people with a learning disability and autism. It lists key points that must be considered when assessing and treating patients.

An estimated 2.5 per cent of the population in England has a learning disability* and the incidence of autism in England is estimated to be approximately 1 to 1.7 per cent of the population.**

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.
  • 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.
  • Listen to parents and carers: Families and carers have a wealth of information about the individual and how their health has been. 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.
  • Make reasonable adjustments: It is a legal requirement to make reasonable adjustments to care for people with a disability under the Equality Act (2010). 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
  • 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.
  • 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.
  • 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.
  • 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.
  • Mental wellbeing and emotional distress: It is estimated that 40% of people with a learning disability experience mental health problems. 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.

***This is an abridged version. Full guidance is available at https://www.england.nhs.uk/long-read/clinical-guide-for-front-line-staff-to-support-the-management-of-patients-with-a-learning-disability-and-autistic-people-relevant-to-all-clinical-specialties/

*Source: https://www.gov.uk/government/publications/valuing-people-a-new-strategy-for-learning-disability-for-the-21st-century

**Source: (Baird et al, 2006)

If you need help with a health problem, contact Helen, our Family Health Adviser. She works with adults with learning disabilities and their families to ensure everyone can access the healthcare they need.