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Establishing Patient Support Groups: A Comprehensive Guide for ICU Recovery

This guide by Peter Gibb from ICUsteps provides essential insights on setting up support groups for patients and relatives in critical care recovery. It covers the need for support, physical and psychological effects, impact on families, follow-up strategies, and practical tips. Learn how to establish core groups, define structures, select support methods, and manage funding needs effectively. Get involved and make a difference in post-ICU rehabilitation with this informative resource.

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Establishing Patient Support Groups: A Comprehensive Guide for ICU Recovery

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  1. Setting up patient and relative support groups Peter Gibb Chief Executive ICUsteps • Mo Peskett • Chair • ICUsteps

  2. The need for support

  3. Why? • Onset of critical illness • Physical and Psychological Impairment • Inequalities in rehabilitation • Cost • Socio/Economic Burden • Change and adapting

  4. Physical effects • Muscle wastage • Difficulty swallowing • Taste changes • Hair loss • and more

  5. Psychological effects • Paranoia • Nightmares • Vivid dreams • Hallucinations • Cognitive dysfunction • PTSD • Delirium

  6. Effect on families

  7. Follow-up

  8. Working in partnership • Invitations to ex-patients and relatives • Tap into reservoir of goodwill • Establish support group • Inaugural drop in

  9. Publicity • Logo • Posters • Website • Follow-up • MKGH media briefing

  10. Drop in - The reality

  11. Spreading the message • Nursing in Critical Care article • Drop in visitors • Intensive Care Foundation

  12. The Five Step Plan • Establish a core group • Define a group structure • Agree a support method • Drop in practicalities • Funding needs

  13. Establish your core group • Patients and relatives out of ICU for 6-18 months • Agree your objectives • Meet at least 3 - 4 times to establish group bonds

  14. Define group structure • Partnership between ex-patients and health professionals • Independent • Organisation type • CVO support and advice

  15. Agree support method • Drop ins • Alternative options

  16. Drop in practicalities (1) • Venue • Frequency • Duration

  17. Drop in practicalities (2) • Timing • Publicity • Layout

  18. Drop in practicalities (3) • Supplies • Roles • Insurance

  19. Funding needs • Support groups have minimal funding needs • Contact local CVO for grant information • Sponsored events

  20. ICUsteps local groups • Members of ICUsteps • Independent • Startup grants • Support network • Broader opportunities

  21. Thanks for listening • mo.peskett@icusteps.org • peter.gibb@icusteps.org • http://icusteps.org • @ICUsteps

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