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- 92
This was published in latest edition of the 25% group magazine and is available for sharing and awareness. It is a very moving piece & includes a description of the difficulties of Emily's last few months in a UK hospital and the inadequacy of her care. There's also original writing and poetry by Emily Collingridge herself, a great advocate for the severely ill.
http://www.25megroup.org/Campaignging/Severe ME Day/2016/A Day for Remembrance - Emily.pdf
Extract
"
What was most distressing was that the wonderful and trusted consultant who had looked after her in hospital and at home for six years and therefore knew her well, had read her book and saved her life on more than one occasion, was no longer allowed to look after her. The hospital would give no reason for this except to say that he was not an ME specialist. Nor was the consultant assigned to her. He professed to have some knowledge of ME, but finally was forced to admit that he
was ignorant of the illness in its severe form – up until then he had thought he was going to cure her. His attitude towards her was arrogant, bullying and rude. He refused to listen to her and to speak to her ME specialist in the community. He allowed her to go without food and vomit three or four times a day for weeks on end with a ‘wait and see’ attitude. When questioned on how long it was safe to go on like this he replied that he didn’t know. He subjected her to treatment com- pletely contra-indicated in ME which made her crash; for ex- ample he refused to let me talk on her behalf, allowed visits from several clinicians at a time, pushed her body with con- stant cannulation and difficult blood tests which wouldn’t have been necessary with a central line (which she would have been prepared to risk) and pressed for procedures when she was not well enough to tolerate them. He talked of rehabilitation despite being shown a letter from an ME champion clinician saying what was appropriate for severe ME. He frightened her by wanting her to see a psychiatrist and when Emily said that she had no confidence in him, he merely answered “well I’m all that you’ve got”. There were many more examples of what seemed to me like abuse. "
http://www.25megroup.org/Campaignging/Severe ME Day/2016/A Day for Remembrance - Emily.pdf
Extract
"
What was most distressing was that the wonderful and trusted consultant who had looked after her in hospital and at home for six years and therefore knew her well, had read her book and saved her life on more than one occasion, was no longer allowed to look after her. The hospital would give no reason for this except to say that he was not an ME specialist. Nor was the consultant assigned to her. He professed to have some knowledge of ME, but finally was forced to admit that he
was ignorant of the illness in its severe form – up until then he had thought he was going to cure her. His attitude towards her was arrogant, bullying and rude. He refused to listen to her and to speak to her ME specialist in the community. He allowed her to go without food and vomit three or four times a day for weeks on end with a ‘wait and see’ attitude. When questioned on how long it was safe to go on like this he replied that he didn’t know. He subjected her to treatment com- pletely contra-indicated in ME which made her crash; for ex- ample he refused to let me talk on her behalf, allowed visits from several clinicians at a time, pushed her body with con- stant cannulation and difficult blood tests which wouldn’t have been necessary with a central line (which she would have been prepared to risk) and pressed for procedures when she was not well enough to tolerate them. He talked of rehabilitation despite being shown a letter from an ME champion clinician saying what was appropriate for severe ME. He frightened her by wanting her to see a psychiatrist and when Emily said that she had no confidence in him, he merely answered “well I’m all that you’ve got”. There were many more examples of what seemed to me like abuse. "
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