Journal of IiME Volume 2 Issue 1 www.investinme.org Experiences of Care in Institutions with Severely-Ill People with ME (continued) The staff often became tired in one way or another. It could be to do with constant arranging, the special considerations one had to take into account all the time, and to be related to the ill person’s problems of accepting the diagnosis, their frustration of not being able to do as much as they wanted, set backs and so on. It was pointed out that a care plan was important to ensure that everyone gave the same treatment. Carers who would be part of the team had to be carefully chosen: “The medical follow up […] is important, but the personality of the carers […] is equally important and has to be appraised accurately. One has to have both nurses and nursing assistants in the team, but it is not necessary to have only professional staff as long as they […] understand the illness and are willing to take on the challenge. The illness and its symptoms can seem challenging and the staff have to be well prepared and in a position to handle this in a confident way both in the presence of the patient and others. It demands confident people who can pacify and who can see the fluctuations the illness brings. It can be difficult to tackle the behavioural pattern when the care is very detailed and it is the patient who steers what shall happen and when. The negotiation of this (with the ill person, added by writer) can have negative consequences for the illness development. It is important that the staff themselves are willing to be in with the resource team because this is demanding ‘one to one’ care. […] The staff also has the need for ‘debriefing’. This is not common in a nursing home and one has to set aside a way and time for this. The role of Relatives ME is a long term, demanding condition which takes the relatives’ time, and where all involved have to live with great uncertainty not only for the future, but for what every single effort can bring on – the daily as well as the extra ordinary ones. The risk for a relapse is always present, and poorly ME patients have very small margins. In this context the relatives were mostly seen as a resource. Often they were in a position to guide both beforehand and during the stay, and they acted in various degrees as relief persons. They were also better than the staff in registering a patient’s deterioration and could act as spokespersons for the ill person. Many take on the role as the extended arm of the ill person. The staff expressed on the other hand also a wish for enough time and resources to be able to look after the relatives better: “As it often involves young people it is important that one has also time for the family […]. The life situation for the whole family becomes very insecure, both because at the moment there is so little knowledge Invest in ME (Charity Nr. 1114035) of the illness itself, individually how the illness runs its course and what timescale we are dealing with.” COMMENT The results confirm the expectation of relatively similar answers even though not everyone brought in the same points. The task opened up for suggestions and reflections, and it was varied how thoroughly reasons were given. Some opinions appeared already during the first contact and are included to complement the picture. Everybody emphasized structure initiatives, especially in connection with screening and dining area, and professional guidance. A few also called for readiness for conflict solving and “debriefing”. Several pointed out the need for specially selected staff, great flexibility and extra time because ME patients put demands on staff resources both physically and psychologically. To be able to prioritise ME patients, it was necessary to have extra staff to solve problems elsewhere in the ward. Alternatively one had to set up personal ME wards. Even though relatives were seen as a resource, a few also saw the need to be able to better look after the relatives, also family members who were not directly involved in the care. Some of the differences in the answers are due to different prerequisites regarding the physical conditions of the institution and existing competence. Some are also due to unequal aims regarding the stay and treatment environment in general. Those who actively rehabilitated differed from the pure care wards, mainly regarding expectations of results. Obviously frustration regarding the illness was expressed more clearly by both those among the ill and carers who aimed for advances via mobility. Even if the expectation is improvement over time with ME, the improvement is mostly very slow, with major or minor relapses when limits are exceeded or with extra strain which is outside the ill person’s control, such as moving, infection or a shock of noise. An approach with preplanned aims is in contrast with the nature of the illness unless the aim is stabilisation, which can be achieved most easily by screening against sense stimulation and limiting activity to a level the ill person can tolerate without bringing on a reaction. At the same time there needs to be an activity plan within the tolerance limit. The thought process is in other words opposite of the usual rehabilitation, where active or passive mobility is guided by tolerance levels being pushed in order to get results. With stabilisation over time the tolerance ability in different areas increases unevenly. There is being created a palpable energy reserve which can be used (continued on page 14) Page 13/34
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