What happened next?

Ds NEWS2 score was 9 at 4 and a half hours after arrival in the ED, and he had bloods taken and fluids prescribed. His NEWS2 remained at 9 for the next two hours. It was then measured again another 2 hours later, when it was found to be 8. 

Pain

LeDeR² has given us some important information here, too. People with a learning disability are less likely to have their pain score recorded and less likely to receive appropriate analgesia when in pain. Doherty et al, 2021, found that autistic people were less likely to report serious symptoms due to previous bad experiences, including not being believed by healthcare professionals. People who do not communicate with words may still show signs of pain and may also be able to use symbols or visual pain charts. Some autistic people find social communication (which includes non-verbal communication) challenging, so may be able to verbalise their pain but may not show the changes in facial expression or posture that we expect to see accompany expressions of pain. 

You may hear people talk about a high pain threshold and people with sensory processing differences may interpret and experience pain differently, but it may also be that your patient finds it more difficult to express their pain, even when they feel it very strongly. 

Family and carers will often recognise pain in a person much earlier than healthcare professionals who are unfamiliar with that person.

The RCEM Learning Disability Toolkit contains some resources you can use to help assess your patients level of pain. Once we have recognised pain, treatment should follow the same pathways as for anyone else, remembering to also include non-pharmacological methods of pain modulation (reducing fear and anxiety, and using local targeted therapy such as splinting or cooling) alongside pharmacological means (more here).  

Ds family saw signs that he was in pain and asked the ED team if he could have analgesia. None was prescribed or administered. 

Hospital Passports

Certain information about a person who has a learning disability can be incredibly helpful to clinical staff during all stages of an ED visit (and inpatient stay or outpatient appointment). Obviously, we need to know about past medical history, medications and allergies, but that sort of information can often be found in the electronic patient record. Information such as how to communicate with someone, how to help them understand, how to understand their needs, how to recognise they are in pain or how to make them feel safe, for example, can make our jobs much easier, along with helping a patient to tolerate their ED visit, but this information is not always easy to find. Families and carers can be an invaluable source of this information, as can a hospital (or health) passport. More information about hospital passports, and some examples, can be found here. Two minutes spent reading a hospital passport can save an awful lot of time, effort and frustration. 

Ds family carried a hospital passport for him and tried to show it to staff, but nobody wanted to read it. 

Learning Disability Liaison Nurses and Physicians

Registered learning disability nurses are specially trained in caring for patients with a learning disability. Most hospital trusts will have a learning disability nurse (or sometimes a team) available to give advice on things like reasonable adjustments, mental capacity and communication (although availability may be limited to working hours). They are an invaluable source of support, information and education, so worth contacting if you are managing a patient with a learning disability.

The learning disability physician role is a new one, but the number of doctors trained in the medical care of patients with a learning disability is growing, across a number of specialties, in primary and secondary care (if you are interested in learning disability medicine as a subspecialty, take a look at the PGCert course run by RCP, which is open to all specialties including EM). 

D arrived in ED during the hospital learning disability liaison nurses working hours, but they were not contacted.