Having advocacy helps the individual feel they have some control over their illness
Today I heard Tessa Jowell’s husband and daughter give a very moving account on the Today Programme of Tessa’s battle with cancer. Her daughter Jess described the role she played as a ‘patient advocate’ which helped her Mum navigate the cancer pathway, new treatment options and research. She was her Mum’s voice, ensuring that she was getting the best treatment. She said that it was difficult to ‘hold her own’ as she had no medical training but I think her determination to do the best for her Mum kept her going. As a CEO of seAp advocacy, the thing that struck me the most was that Jess said that at the end she knew that there was nothing more she could have done which echoes the feedback we get from family members that advocate for their loved ones. The other side of that is how people feel when they are not able to advocate because they lack the confidence, don’t understand the system or are not listened to—they feel they’ve let their loved one down and sometimes feel responsible for their death. It makes the grieving process so much more difficult. Having good advocacy helps the individual and the person who is advocating feel they have some control over their illness.