Roger & Teresa – Interview 30  

Roger & Teresa – Interview 30

Age at Interview: 59
Sex: Male
Background: Roger is a mini-bus driver, widowed, with 5 adult children. Ethnic background/nationality: White British.

Brief outline:Roger’s wife Teresa was diagnosed with bulbar onset Motor Neurone Disease. She died a year ago, aged 64, less than six months after the diagnosis.

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Although he represented continuity of care, Roger found communications with him as carer were not always good and he was sometimes ignored.

 



As far as the communication was concerned certainly, I think it was best at the top and it was best at the bottom. The consultants, doctors, these sort of people - excellent. Clearly they had received training in communication skills and knew to ask if we had questions to ask etc. I felt that ward staff, people like this were very good. They may not have had the training but they just did it instinctively, incidences where they were concerned for my welfare. Now I was there obviously to care for Teresa, so in caring for me they were caring for her too. But hospitals are, are not supposed to feed relatives but many of the nurses made sure that I didn’t fade away in the chair.

But because I’m a relative, I’m not a healthcare professional, some people would ask, awful lot of people would ignore, tolerate is a word, you know. I was put up with. I was swept around, I was, you know, moved to one side. But other people actually recognised that I was actually part of Teresa’s support and treatment care team and treated me as such. And usually the times they found out that I could be the most valuable was at the times when they suddenly found things or something had gone wrong, because I actually represented continuity. I was the one that was there all the time. I’d heard what every doctor had said. I’d heard what every physiotherapist had said and all the other professionals that had interfaced, what their views were. I had seen where the breakdowns in communication had occurred, I had seen where the notes had gone missing for a time or somebody had said something and not put it in the notes, because I was maintaining my own notes. But I doubt very, very few carers, relatives, whatever, would ever go to the trouble of maintaining contemporaneous notes over a period of months.
 

Edwina Currie
Caring for someone with a terminal illness
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