Patient Support groups A practical guide Mo Peskett Peter Gibb and All of you

WHAT WE’LL COVER Intro Intro The five steps The five steps Dealing with tricky questions Dealing with tricky questions Anything else? Anything else?

The five step plan Establish a core group Establish a core group Define a group structure Define a group structure Agree a support method Agree a support method Drop in practicalities Drop in practicalities Funding needs Funding needs

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

Define a group structure Partnership between patients and health professionals Partnership between patients and health professionals Agree individual responsibilities Agree individual responsibilities Should be independent from the hospital Should be independent from the hospital CVO support and advice CVO support and advice Organisation structure Organisation structure

Agree a support method Drop in Drop in Alternative options Alternative options Professional support Professional support

Drop-in practicalities Venue Venue Frequency Frequency Duration Duration Timing Timing Publicity Publicity Layout Layout Supplies Supplies Roles Roles Insurance Insurance

Funding needs Minimal funding requirements Minimal funding requirements Consider sponsored events Consider sponsored events Contact local CVO for advice and grant information Contact local CVO for advice and grant information

Frequently asked questions Bereavement Bereavement Confidentiality Confidentiality Münchausen syndrome Münchausen syndrome Disruptive participants Disruptive participants Medical advice Medical advice

Being an ICUsteps group Member of ICUsteps Member of ICUsteps Independent Independent Startup grants Startup grants Support network Support network Contributing to the larger picture Contributing to the larger picture What do YOU want from membership? What do YOU want from membership?

ANYTHING ELSE?