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

The need for support

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

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

Psychological effects Paranoia Nightmares Vivid dreams Hallucinations Cognitive dysfunction PTSD Delirium

Effect on families

Follow-up

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

Publicity Logo Posters Website Follow-up MKGH media briefing

Drop in - The reality

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

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

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

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

Agree support method Drop ins Alternative options

Drop in practicalities (1) Venue Frequency Duration

Drop in practicalities (2) Timing Publicity Layout

Drop in practicalities (3) Supplies Roles Insurance

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

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

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