Journal of IiME Volume 2 Issue 1 www.investinme.org Experiences of Care in Institutions with Severely-Ill People with ME (continued) enough. The ill people had to have even temperature and could feel uncomfortable by the heat in the summer. For the consideration of both the patients and carers the need for good air circulation meant installation of an air conditioning system, especially where there was extra sound and light proofing. Kitchen and food Customised food was seen to some extent differently depending on the routines of the institution and reflected somewhat the knowledge of, or acknowledgment of food intolerance problems with ME. It was difficult to register if a patient deteriorated due to certain foods. In one case a special diet was only present if there was a doctor’s note. It was, however, known that many institutions avoided usual foods such as milk, sugar and flour. Even this caused extra work. A few found it natural to work with a dietitian and adjusted the food according to the patient’s wishes. Others called for a nutritionist and for a possibility to order special food. To have enough time for feeding was, as a rule, seen as the biggest problem. It was simpler if the ill person took all food in a liquid form. The need for extra time for feeding was seen throughout as a resource problem which had to be solved by adding extra staff elsewhere. Purely physically some pointed out the need for a private kitchen for more flexible solutions for the ill person and their families to be able to cook for themselves. The relatives could then also more easily function in a supporting role for the ill person and at the same time offload the staff. Staff In addition to special physical efforts, there was a need for extra human resources. There was a wish for a regular, stable staff with the fewest possible people, who could cover the ME patient’s need 24 hours a day. “[…] all care such as tidying up, feeding, washing and so on takes at least three times as long as one is used to.” This demands such large resources that it requires increased staff in the ward as a whole. Among other things it was wished for a limited amount people involved with every ME patient because “it is difficult for the patient to relate to too many of the staff”. Here one wished for a lot of accommodation to reduce the amount of people in the team. A few involved also wished for everyone concerned to be able to see warning signs of deterioration and take precaution- “ for example sleep, chest pain, blurred vision, runny eyes, headache, pressure on the forehead, sweaty palms, cold extremities, tingling of toes and Invest in ME (Charity Nr. 1114035) fingers, sound of voice”. The carers also had to act as the ill person’s spokesperson to the outside. ME patients have to mobilize to be able to talk and cannot always talk when it suits others. Forward planning Prediction and the possibility of being as well prepared as possible for what is happening and when, is vastly important for the ME patient to be able to manage the daily life. Ordinary home nursing care doesn’t therefore work well. To be able to take care of the patient’s “physical, psychological and social needs demands a certain amount of understanding of the diagnosis (complexity of problems)”, as expressed by one of the carers. For example, to understand the consequences if one arrives a few minutes late. “We set alarms and change times for other tasks so that we can be precisely with an ME patient. If we don’t attend we know the consequences for the patient becoming worse and having to, for example, rest a day or two afterwards to recover.” Another one explains how deterioration was triggered by the cleaning staff being five minutes late. The two institutes which followed detailed instructions from relatives, and took patients’ wishes to the point, had experienced that this worked and the ill person improved. A leading caregiver was surprised at how little extra work it took to make carers come at agreed times and do all the tasks exactly in a way the patient advised – even though the ill person could additionally call for help outside the agreed times. Many called for information well in advance before the patient arrived to the ward, while others had had enough information from relatives. Many put weight on the usefulness of important people in the ill person’s network. Many on the other hand called for professional guidance, courses and seminars. The setting up of an ambulant specialist team was suggested, possibly regional ME wards. Cooperation Coaxing and stimulation can have the opposite effect of that which was intended. The ill person wants to, but can’t, and becomes frustrated over coaxing – if it is not always so well meant: “It is important when advising the staff connected to the ME patient that one has to think differently compared to how one thinks with other patients in the ward, for example patients in rehabilitation, long term patients, and others.”. As a consequence of improvement there is often a need for stimulation and a big need for talking. “Let the patient make contact without him being bombarded with impressions…”. One can for example “respond with cards or simple nods”. In other words: Let the ill person take the initiative themselves. (continued on page 13) Page 12/34
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