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Keywords:

  • Doctors;
  • medication;
  • pain communication aids;
  • pain management;
  • pain recognition;
  • pain recognition tools;
  • people with learning disabilities

Accessible summary

  •  People with learning disabilities describe pain in terms of feelings or emotions.
  •  Staff and doctors do not use pain recognition tools or communication aids.
  •  People with learning disabilities often do not tell staff or family carers that they are in pain. If they do, they are unlikely to be given pain medication, and more likely to be taken to the doctors.
  •  People with learning disabilities mostly know who is their doctor and understand what the doctor does. The majority of people said that the doctor explained what was wrong with them, what the medication was for and how often they needed to take it.
  •  This research matters to people with learning disabilities. It is important that staff and carers recognise and manage pain well. Since this audit a pain training pack for staff and carers has been developed and is being used and booklets for both people with learning disabilities and staff and carers have been developed and given out.

Summary

An audit was conducted across Surrey to investigate pain recognition and management with people with learning disabilities. This section of the audit looked at what people with learning disabilities understood and experienced when they had pain compared to good practice from the literature. The results show that people with learning disabilities struggle to discuss pain effectively, and that little use is made of additional communication aids. People with learning disabilities rely on others to deal with their pain, but may not tell people that they are in pain. The most common response to having pain is to go to the doctors, and many people were not offered pain medication by staff. It was also reported that other alternative strategies were not used to manage pain. Although most people did not make the decision as to whether they needed to see their doctor, most people knew who their doctor was and reported good experiences in terms of information sharing once at the appointment. Further work has since been undertaken in Surrey to address the concerns raised in this audit through the development of information booklets on pain recognition and management for people with learning disabilities and for staff and family carers, together with the development and roll out of pain training.