Meet the Team: Carrie

Carrie Jain is a public involvement representative from the Northern Ireland Cancer Research Consumer Forum. In this blog, she draws from her and her husband’s experience with cancer in explaining why integrated palliative care in oncology is so important

The diagnosis came as a body blow, quite literally – and it broke him. My husband had dealt stoically with serious cardiac problems for many years and was fully comprehending of the nature of his condition and his declining prognosis.

But this – CANCER – advanced prostate cancer. Shock, confusion, fear. The proverbial straw that broke the camel’s back. How was he going to die? This was one of his first questions and it made it difficult for him to hear the positives: there was treatment available, he would be more likely to die with the cancer than from it.

As his closest carer, I felt desperate to help but also overwhelmed. We received huge amounts of written information and found our way to the Macmillan Centre, but at that stage my husband needed more than they could offer. The psychological burden was simply too great. Treatment began and he responded well but his heart condition deteriorated. In a short time, he needed palliative care.

What helped us most through this morass of confusion and complexity? A turning point was when we were referred to the Integrated Care Clinic at our local hospice. There, we had a clear and accessible contact point, a place to go with our questions, someone to direct us to sources of support. The many strands of need were connected and action to meet those needs was coordinated. Palliation ran alongside treatment. We were fully involved in every aspect of care, from complex drug management and pain control, to emotional support. Vitally, there was time for talking, listening and reassurance.

Integrating palliative care and oncology more widely would enhance the physical and psychological care of patients and their carers, to everyone’s benefit.

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