"Hepatitis treatment in Nottingham"

About: Queen's Medical Centre / General medicine

(as the patient),

This is the latest stage in an ongoing issue. I was first referred to QMC Nottingham in 2014 after I was incidentally discovered to be HCV+ during investigations for an autoimmune/neurological disease.

I feel my reservations about the treatment were brushed aside (I did not have hepatitis and had heard the treatment was contra-indicated when there are autoimmune complications). The treatment made me desperately ill and the damaging side effects have never worn off, despite my only lasting five weeks of the proposed ten month course. My consequent symptoms (notably Chronic Fatigue Syndrome, narcolepsy, lameness, damage to joints, eyesight deterioration and memory loss) were, I thought, completely ignored.

A few months later I was persuaded to undertake the same treatment a second time (by being led to believe I faced liver cancer if I refused). This time I insisted on being treated elsewhere so was sent to Nottingham City Hospital where I was assured I'd have very careful observation given my previous experience. That proved untrue to my mind; five appointments in a row were cancelled by the consultant; the first batch of medication was apparently inert; the second arrived over a week late, and six weeks into treatment I was still being given contradicting instructions re dosage. The side effects were intolerable including seven day migraines and blackouts, and when I called for emergency medical advice when no one was available and no one to return my calls.

Unsurprisingly I had to abandon the course again. Needless to say I was left with even more damage, and absolutely no attention, diagnosis or aftercare treatment then or since. I feel let down in every way.

QMC recently began asking me to place myself in their care a third time: I have attempted to speak to them by phone and email for assurances there is a different, not-contra-indicated, treatment available.

I am also concerned with the involvement of private health companies in relation to my treatment. I feel I was cajoled and rushed into the hepatitis program, instead of being properly diagnosed for the completely different disorder for which I had originally presented.

Additionally the performance of the City Hospital team was, I felt derisory; cancelled appointments, missing medication, dosage confusion, non-functioning emergency-response, nil aftercare. Neither QMC nor City have ever checked on my welfare afterwards. I was asked to suggest things they could improve but its hard to think of anything that couldn't be improved in my experience.

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