The need for dedicated care for sensitive patients (updated)
Earlier today I got an update from the family of Emily Collingridge, a lady from south London who wrote a book on living with Severe ME, based partly on her experiences (she has been ill since 1987, when she was six years old, and is currently extremely seriously affected) and partly on those of other sufferers and the contributions of various experts, which was published by AYME, a youth ME charity. Emily suffered a severe relapse after the book was published, prompted by an unavoidable hospital admission, and correspondence from her family has said that she had endured very extreme pain and other symptoms since, although they decline to go into some of the details. However, one depressing aspect of her recent experience is that she has refused to be readmitted to hospital because, on previous occasions, “the hospital weren’t able/willing to meet her need for a quiet and dark care environment which had a devastating impact on her body”.
Severe ME (and sometimes, less severe ME) often heightens the senses of the sufferer, so that any touch can be experienced as pain and much (or sometimes any) noise and light can also be very painful. Emily Collingridge noted that, during a previous admission during a previous crisis, she could hear the doctor whispering to her parents that her heart might give up, and he did not believe she could hear them. Hospital wards, as anyone who has ever visited an inpatient in one, let alone had to be in one, will know, are not particularly restful places, even at night, something I remember from visiting my sister in one a few years ago; she had not been able to sleep properly because of the constant noise and activity on the ward at night. What this must be like for a patient who really needs quiet and other stimulation reduced or eliminated does not bear thinking about.
It really begs the question of why London, a wealthy city of some 7 million people, cannot provide a facility like this: a suite in a hospital where staff are trained to deal with patients with sensitivities to noise, light and chemicals; such patients include ME sufferers but also those with Multiple Chemical Sensitivities (MCS) and, perhaps, autism (obviously, in conjunction with whatever else they are in for), and where they receive minimal disturbance, an environment suitable for their sensory needs, and where they are not exposed to harsh-smelling chemicals such as certain cleaning agents. Needless to say, they need to be staffed by people who understand (and accept) these conditions and are sensitive to the patients’ needs. I’ve never had experience of running charity appeals, but there needs to be an appeal to raise funds for such a unit so that patients like Emily can feel safe in an institution which is there to heal their sickness (or ease its symptoms and complications, if they can’t deal with the illness itself) rather than make their suffering even worse.
Update 20th November: Emily Collingridge responded to my proposal on the Facebook page for the Severe ME/CFS book: you can find the discussion here (in the second of Jim Collingridge’s comments).
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