Sally Nissen, lead nurse palliative care snissen@thechildrenstrust.uk

1. Improving pain management in children and young people with complex disabilities, resulting from acquired brain injury and neurological conditions, at a residential facility Sally Nissen, lead nurse palliative care snissen@thechildrenstrust.org.uk

2. Overview • Improving pain management in children with complex disabilities • National guidance • Local agreed standards • Audit tool (methodology) • Supportive interventions for changing practice • Audit results

3. The Iowa model of evidence based practice to promote quality care (Titler, et al. 2001) • Pain - a priority for the organisation? • Trigger • Research and related literature • Design EBCPG, implement and evaluate • Monitor/analyse • Disseminate results

4. Pain in children with complex disabilities (acquired brain injury and neurological conditions) • Pain may not recognised (Hunt et al, 2003) • Higher risk due to health conditions, investigative procedures and treatments (Breau, 2003) • Higher risk of accidental and • non accidental injuries (Breau, 2003) • Less likely to receive active pain • management (Stallard et al, 2001)

5. Current national guidance Royal College of Nursing (2000; 2009) • Health professionals should anticipate pain in children at all times • A validated pain tool should be used • Assess pain at regular intervals Royal College of Anaesthetists and Pain Society (2003) • Pain and its relief must be assessed and documented on a regular basis

6. National Service Framework: Children and Young People who are ill (2007) • Pain management is routine • Regular audit of children's pain management • Particular attention to children who cannot express their pain because of their level of speech, understanding, communication difficulties, or their illness or disability

7. Local agreed standards • All children will have pain tool identified • All pains addressed by an intervention • All interventions evaluated

8. Why audit? • To evaluate whether standards are being met • Pain identified as a gap in measured outcomes

9. Methodology • Review of nursing care files • Eight departments audited • Retrospective review of seven days

10. Methodology continued • Evidence of pain tools • Evidence of words indicating possible pain, discomfort or distress. e.g. ‘crying'; 'sore.’ • Evidence of pain tools used • Interventions • Interventions evaluated • Regular analgesia

11. Example of documentation

12. Audit results 2010

13. Evidence based guideline • Local context applied to national guidance • Pain tools and a decision tree • Interventions • Coordinated approach

14. When communication of ‘Yes’ or ‘No’ is easy Sufficient Cognitive Ability (and > 4 years) Some Cognitive Impairment ( and > 3 years) If in doubt Wong/Baker Faces Scale (Wong et al, 2001) Direct Questioning: Numeric Rating Scale (McCaffery and Beebe, 1993) Therapy assessment advises individually adapted or simplified tool If in doubt go to when communication is difficult

15. When communication of ‘Yes’ or ‘No’ is difficult Neurologically Impaired or < 3 yrs NOT known well by staff Disorder of consciousness Neurologically Impaired or < 3 yrs known well by staff FLACC revised (Malviya et al, 2006) Individual pain assessment profile Nociception coma scale (Schnakers et al, 2010) If consciousness improves review tool

16. Changing practice • Educational materials • Conferences/lectures/workshops • Local consensus process • Educational outreach visits • Local opinion leaders • Patient mediated interventions • Audit and feedback • Reminders (manual or computerised) • Marketing (Grimshaw J, Shirran L, Thomas R et al. 2001) • Interventions offer a median effect of 10% improvement (Grimshaw, Eccles and Tetroe, 2004) 

17. Pain indicators per child/week

22. Summary of all results

23. Conclusion • > 10% improvement on most aspects • Change in practice is slow • Pain management has been improved • Continued improvement is needed

24. A big push forward… • Continue interventions to change practice • Individual team efforts • Managers review pain scores • Continue special interest group • Move to adopt EBPCG as policy

25. Thank you for listening