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Getting the message across - supported self management for persistent pain in Northern Ireland

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LOuise Skelly
Health Literacy Conference: Making Life Better
Belfast 2018

Published in: Health & Medicine
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Getting the message across - supported self management for persistent pain in Northern Ireland

  1. 1. Getting the message across- supported self management for persistent pain in Northern Ireland
  2. 2. A journey of discovery • 15 minutes on why, when, who, how, where and what… • 5 minutes for asking questions and finding answers…
  3. 3. Health Information The World Health Organisation (WHO) defines health literacy as: • “….the personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health”.
  4. 4. In the beginning… • People sought help • Partnership with patients and PANI • 2,500 people surveyed • Report launched in 2014
  5. 5. Persistent pain • affects at least 1 in 5 people in Northern Ireland • loses EU countries 3- 10% of GDP • doubled NI pain prescribing costs since 2005
  6. 6. Recommendations 1. Long-term pain should be recognised as a condition in its own right by all HSC organisations. 2. Training/ information for GPs and other health care professionals are needed to increase awareness of long- term pain and its effects on those who have it. 3. Information resources developed for healthcare staff should be informed by and tested with people who live with long-term pain, their carers and relatives. 4. Patients should be offered a range of pain management care and support programmes including supported self- management.
  7. 7. Levels of Service 300,000 100,000 50,000
  8. 8. SURG Information Primary and Community Care Hospital Services Self Management
  9. 9. Young women with Endometriosis “I can’t believe I’m on HRT at 27 years old” Age: 27 Work: Student Family: Single Location: Belfast Bio Sam is 27 years old and has epilepsy (diagnosed at 9 years old) and endometriosis (diagnosed at 25 years of age). She is a post graduate student at QUB. She is very tech savvy and manages both the website and social media for the endo support group. Sam is confident managing her epilepsy medication with the support of her nurse, however she finds it difficult to manage the pain associated with her endometriosis. Goals • Would like more information on pain management techniques for endometriosis to help her manage her pain. • Wants to connect with young people who are going through the same thing as she is. • Would like to decrease her pain medication as it negatively impacts her epilepsy medication. Frustrations • Is on HRT and will be for 16 months until she has an operation. • Lack of support she has been given from her Health Care Professionals to manage her pain. • Doesn’t feel confident enough to talk to her pain management consultant to self manage her medication.
  10. 10. https://www.myni.life/
  11. 11. Northern Ireland PfG Outcomes We prosper through a strong, competitive, regionally balanced economy. We live and work sustainably - protecting the environment. We care for others and we help those in need. We have high quality public services. We enjoy long, healthy, active lives.
  12. 12. Other Hackathon Outputs PhD on Visualisation of pain Breathe – Mindfulness VR app Pain tracking app https://www.youtube.com/watch?v=CzKm_FupXp8
  13. 13. Any Questions? Telephone • 0800 917 0222 Post • The Patient and Client Council • 2nd Floor, Centre House, 79 Chichester Street • Belfast BT1 4JE E-mail • info.pcc@hscni.net Public Health Agency Linenhall Street Unit 12-22 Linenhall Street Belfast BT2 8BS Tel: 0300 555 0114 /PatientAndClientCouncil @PatientClient PatientClientCouncil Follow us online! http://www.publichealth.hscni.net/

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