Yesterday we spoke to a young woman with a tough choice to make. Her doctor says there is cancer in her eye. He recommends removal of the eye. The choice to proceed is hers. As we talked I could see she was reeling from shock and fear of the unknown. In these difficult circumstances the burden of choice was unspeakably heavy.
We see that decision-making falls squarely on the shoulders of patients and many can’t cope with it. People tell us they feel alone at this time. They don’t know where to go or who to speak to. In these circumstances fear of the unknown can cause unnecessary delays.
It is a fact that people only remember a small percentage of what it said to them. In stressful circumstances this may be even less. We see people suffering as they struggle to make a choice with the limited information they are able to remember.
We are developing a patient support base to give people information and direct them to support services. Ideally we would like to see people on the day of diagnosis or at the least set up an appointment as soon as possible. We want each person to have access to relevant and reassuring information to facilitate their decision-making.
Choosing surgery is always going to be a tough decision but I think the right information at the right time can ease the burden considerably. It’s a personal passion of ours and we aim to get a lot better at it.
Posted in Emotional Response To Eye Loss, Support For Eye Loss. Permalink for this post: permalink.
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