Journal of IiME Volume 2 Issue 1 www.investinme.org Experiences of Care in Institutions with Severely-Ill People with ME (continued) institutionalised care situations to be fairly similar, even with relatively restricted material. A Small Survey In all eight institutions which had been known to have taken in a severely affected ME patient, were contacted by telephone. It varied whether it was the ward nurse or someone else in the team around the patient who answered the phone. They were told about the objective, which was to obtain an enunciation from a person with “hands-on”-experience with a severely ill ME patient in an institution, with the idea of how one could give adequate services in the future for this patient group, without taking into account the existing restrictions in resources. It must be said quite explicitly that especially “grass root” experiences can be as important as recommendations and therapy suggestions from professionals who do not know what the care situation involves. It was left to the departments themselves to decide who would formulate the answers. The following questions were asked: Which resources should you be provided with to be able to offer adequate care for a seriously ill ME patient? State reasons for your answer based on your own experience. Seven of the institutions gave written answers by e-mail, post or via both. The eighth considered that ME was not the reason for the patient’s care need and their experiences were irrelevant for our study. One institution asked for the question to be provided in writing but had reformulated the given problem when they gave their answer. This didn’t affect the outcome and was only taken as a novelty. In three cases single statements were elaborated upon after renewed contact. The study’s starting point was five women and two men who needed care. In one case the patient lived with the parents but was cared for by permanent staff from a nearby institution. In one occasion the ill person lived in a care home connected to a nursing home. In one occasion it was a rehabilitation centre that admitted patients on a short term basis, with a clear target of improvement during the stay. In this case the place was used as a half way house because of lack of space elsewhere. In one case it was a short term department within a nursing home that ran the rehabilitation. The others were ordinary nursing homes. Some of the institutions didn’t have any previous experience of ME, whilst others had experience of several ME patients with unequal grades of severity. The extent of this experience material is not known. The relatives were involved in to different extents in the daily care and acted partly as advisers. In a few places the staff also functioned in a supportive role for relatives. Invest in ME (Charity Nr. 1114035) RESULTS The answers are concentrated especially on economical support for physical efforts, extra staff, individually adjusted eating and extra time. One wished for regular staff with a limited amount of chosen carers and guidance both before and after the stay. A few were also concerned about how one could look after relatives and carers after meetings with patients in a permanent crisis. The special problems that materialised when patients got more energy became more apparent in various degrees and are in the borderline toward rehabilitation. Screening against sound The fewest could look after the need for complete sound proofing. Amongst the suggestions were a private room in an area with least noise pollution, a sound proofed room, a sound proofed door and eventually one’s own screened ward. In one case there was a built in sound proofed room within a supportive housing accommodation. Common dining areas were too noisy. Even if a few could physically get to the dining area themselves, the food had to be brought to the room. Many pointed out that the staff had to perform tasks quietly and be aware of their voice level, use of equipment such as plastic utensils, finish as quickly as possible, not talk unnecessarily, possibly use cards instead of spoken words, make sure that housekeeping tasks were done in such a way that the patient was not burdened. Many noticed that tolerance for sound and talk improved as the condition improved and then it was mostly the ill person themselves who initiated discussion with the staff and exposed themselves to sound from the radio or sang to themselves. Screening against light The patient’s need for complete black out could mean problems in caring. Many wished for lights that could be dimmed gradually. In one ward it was suggested, in order to avoid a gap between the window and screening, to install a roller blind inside the double glazing and additionally double curtains. Comfort for lying down For patients who spend most of the time in bed it was identified by one institution of the special need for a good bed/mattress. Temperature and air quality One place which took in several ME patients pointed out that a normal ventilation system was not good (continued on page 12) Page 11/34
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