How can healthcare professionals support people with a learning disability

NHS England has published a clinical guide for frontline healthcare staff to support the management of patients with a learning disability and autistic people.

The guide is relevant to all clinical specialties and updates a previous guide written three years ago during the Covid-19 pandemic.

NHS England says that healthcare professionals have responsibilities to ensure that people with a learning disability and autistic people receive good care as 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.

There is also evidence that premature mortality is higher for autistic people compared to the general population and that autistic people have higher rates of health problems throughout childhood, adolescence and adulthood including a higher rate of mental health diagnoses.

Supporting the healthcare needs of people with a learning disability and autistic people

The document raises awareness of diagnostic overshadowing, which is when symptoms arising from physical or mental ill health are misattributed to a person’s learning disability or autism leading to delayed diagnosis or treatment.

The Royal College of Nursing says diagnostic overshadowing is particularly pertinent when new behaviours develop or existing ones increase. People with learning disabilities have a much higher risk of experiencing a variety of diseases or conditions, and it is vital that physiological or pathological determinants in behaviour change are explored. If they are not, people with learning disabilities can suffer poor care and avoidable deaths may even occur.

In a similar vein, it adds that heathcare professionals need to understand behavioural responses to illness, pain and discomfort. This is because a person with a learning disability and some autistic people may not be able to articulate their response to pain in the expected way. 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For example, by displaying challenging behaviour, laughing or crying, trying to hurt themselves, or equally may become withdrawn or quiet. Therefore, understanding what is ‘normal’ for that person is really important.

It adds that talking and listening to family and carers is crucial to helping with assessment and diagnosis as they are a wealth of information about the individual and how their health has been, including any comorbidities and the medication that the person is taking.

Other useful tips include asking the family or carer for short videos of the person to give healthcare staff an idea of their usual self and remembering that the carer they come into hospital with may not be their usual carer at this unusual time.

Reasonable adjustments and DNACPR

It is a legal requirement to make reasonable adjustments to care for people with a disability under the Equality Act (2010). NHS England says getting the reasonable adjustments right is important to help professionals make the correct diagnostic and treatment decisions for an individual.

These adjustments should 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.

In addition, clinical decisions around care and access to treatment must be made on an individual basis and 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.

The guide says that 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.

Other recommendations for frontline healthcare professionals are:

• The use of 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.
• 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.
• 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.

It is estimated that 40% of people with a learning disability experience mental health problems and research suggests autistic people may be more likely to experience depression than non-autistic people. Therefore, a 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. Therefore, the guide says not to assume that this is an indication of mental illness.

It ends by stating: “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.”