Raising the voice of the silent consumer

Kathryn Houri­g­an, reflects on her first 6 months as the Con­sumer Co-Lead for the Statewide Pal­lia­tive Care Clin­i­cal Network.

The Com­mis­sion on Excel­lence and Inno­va­tion in Health (CEIH) has recent­ly estab­lished Co-Lead roles for the Statewide Pal­lia­tive Care Clin­i­cal Net­work. I have been appoint­ed as the Co-Lead Con­sumer and Dr Peter All­croft as the Co-Lead Clin­i­cal. Not only is the Co-Lead­er­ship mod­el very inno­v­a­tive but to pro­vide a con­sumer with equal voice in a lead­er­ship role is a first with­in the CEIH, known for cham­pi­oning new ways of think­ing and enhanc­ing the com­mu­ni­ca­tion between care­giv­er and care receiv­er, a sacred space of interaction.

We share respon­si­bil­i­ties as Co-Leads and although our skills are dif­fer­ent, we do through col­lab­o­ra­tion search out mul­ti­ple ideas and explore solu­tions for the bet­ter­ment of pal­lia­tive care for those peo­ple with a life lim­it­ing ill­ness — lit­tle chil­dren, teens, young adults, adults or the aged. Pal­lia­tive care is not only about liv­ing well and dying well with a life lim­it­ing ill­ness but the pro­vi­sion of grief and bereave­ment ser­vices to loved ones after the death.

Of course, liv­ing and dying well dif­fers for every­one based on the ill­ness tra­jec­to­ry, ill­ness lim­i­ta­tions, cul­ture, beliefs and val­ues sys­tems, hopes, aspi­ra­tions, sup­port net­works and ser­vice avail­abil­i­ty across South Aus­tralia. An impor­tant role as Con­sumer Co-Lead is to raise aware­ness and to advo­cate for peo­ples voic­es to be respect­ful­ly heard so their needs are met accord­ing to their wishes.

Since com­menc­ing the Co-Lead roles both Peter and I have sought to build thought­ful rela­tion­ships with con­sumers and staff with­in SA Health, with all those who pro­vide pal­lia­tive care ser­vices. Be they gen­er­al prac­ti­tion­ers, pro­fes­sion­al bod­ies, research insti­tu­tions, clin­i­cal leads, nurs­ing leads, aged care and/​or pal­lia­tive care providers both for met­ro­pol­i­tan and rur­al communities.

A par­tic­u­lar focus has been iden­ti­fy­ing ways in which the patient and car­er expe­ri­ence of pal­lia­tive care ser­vices can be assessed that will help the care givers under­stand what is work­ing well or where improve­ments could be made. This is a new and inno­v­a­tive area and one that is being advo­cat­ed for at a State and Nation­al level.

Anoth­er impor­tant area is a long-term sus­tain­able work­force to meet the increas­ing need for pal­lia­tive care in an aging pop­u­la­tion and a work­force that feels val­ued and whose well­be­ing is at the fore­front of health care plan­ning. The needs of the care receivers and the care givers require equal con­sid­er­a­tion so that the sacred space between them is nur­tured and maintained.

Peter and I, as Co-Leads will con­tin­ue to advo­cate for and pro­mote the best pal­lia­tive care prin­ci­ples through col­lab­o­ra­tion, focus­ing on respect, com­pas­sion and to enshrine equi­ty of access for all who need pal­lia­tive care.

To read about more about the Net­work and its projects, see Statewide Pal­lia­tive Care Clin­i­cal Net­work.