Reflections of a Patient – “One Of The Team”
IFIC has really embraced person-centred care, and I believe this is the first conference I have been to that has such a high proportion of patients and caregivers. 300 of the 1000 attendees were patients or caregivers, which is fantastic. Congratulations to IFIC for making it possible for patients and caregivers to play such a key role in the conference – including co-designing, chairing, presenting and contributing in many more ways.
I was very pleased to be given a platform to speak about my own experience as a patient with breast cancer. I had been so impressed with how integrated and person-centred my care had been. There was no fragmentation on my care, which was phenomenal.
The Chairs of my session, Mandy Andrew and Philiz Goh put me at my ease and it was a very relaxed discussion given the very personal nature of my story.
My account shows that I experienced multiple types of integration. These included horizontal, vertical and multi-agency integration as well as person-centred integrated care. I spoke of the integration between the hospital and my GP practice, the multi-agency integration between the hospital and MacMillan Cancer Support (a Non Governmental Organisation) and the multi-disciplinary working of the many practitioners and staff across two hospitals and many departments.
Fundamentally in my care I was treated right from the start as “one of the team.”
I was treated with respect, listened to, given as much time as I needed, treated with compassion and supported with shared decision-making throughout. I felt empowered, particularly given my access to my information on my condition and care plan in my notes through the hospital portal. What also helped was that I was on a personalised care follow-up plan with direct access to a breast care nurse, which transformed my care and reduced my anxieties.
I reflected on my care using autoethnography as an approach, and comparing my care to some of the 9 Pillars of integrated care. I concluded that what was really important to me was certainty – I always knew what was going to happen next, and never feared being lost in the system. This was exceptional care at the best of times, and this was during a pandemic.
I wanted to share my story as a way of thanking everyone involved in my care, and as a way of capturing what is important to me as a patient. The breast cancer care protocol is well established offering high quality efficient care, with impressive seamless care. I wanted to make sure this was recognised, celebrated and not disrupted by any future changes.
So thank you to IFIC. I have spoken at IFIC conferences before in a professional capacity, and always found the conferences to be stimulating and informative. However this one was very special, and had patients and caregivers at its heart. I was so honoured to be part of it, and touched to receive not only the very first IFIC conference award to a patient, but the IFIC Overall Award for the conference. Thank you.
I want to thank everyone involved in my care and in particular the staff at West Suffolk Hospital in West Suffolk NHS Foundation Trust; Addenbrookes Hospital in Cambridge Universities Hospitals NHS Foundation Trust, Botesdale Health Centre and MacMillan Cancer Support. I am delighted to report that I have been successfully treated for breast cancer and that I making a good recovery.
Community Hospitals UK