"Pushed aside"

I have a complex, chronic illness involving connective tissue disease and long-term anaemia. Over the years, I’ve had care from several hospital departments – including Rheumatology, Endocrinology, Haematology, Cardiology, Orthopaedics and Dermatology. Many clinicians have been kind and thorough, but what’s missing is communication between departments and anyone looking at the whole picture.

Today I found out that the haematologist at Inverclyde Royal Hospital removed me from the waiting list, stating that my anaemia had “resolved.” This decision was based on one panel of blood tests and doesn’t reflect my history. My results fluctuate – and rarely is my haemoglobin 'normal,' with most of the time, clearly anaemic – and I continue to feel exhausted, breathless and unwell. At present, I feel ignored and pushed aside. My problems, no matter how small they may appear to them, are real to me and are causing me immense difficulty — otherwise I wouldn’t be taking the time and effort to raise this concern.

One recurring problem is that my ferritin levels continually deplete, showing ongoing or recurring iron deficiency anaemia. I can’t tolerate oral iron, so IV infusions are essential. Gastroenterology have ruled out absorption or bleeding problems through endoscopy, colonoscopy and duodenal biopsy. Regardless of which department oversees my care, there must be a clear plan to monitor iron and ferritin levels regularly and provide timely treatment to maintain them at a safe, stable level, even if my anaemia is partly due to “anaemia of chronic disease.”

I also remain unconvinced that my anaemia is simply “anaemia of chronic disease,” as my bone marrow seems to underproduce red cells even when ferritin level is adequate. I would like a clear plan to ensure nothing more serious is being missed, including consideration of a bone marrow biopsy if after B12 and ferritin levels are optimal my RBC still remains low.

I hope sharing my experience highlights how distressing it can be for patients with complex conditions when communication breaks down — and how much difference coordinated, compassionate care could make.