Epidermolysis Bullosa Home Care Standard care plan Coordination of care

As more disciplines are generally involved in the care it is important for the patient / carer that the care is coordinated, both intramurally and extramurally. The importance of coordination of care for patients with chronic conditions is usually endorsed. In principle anyone who is involved in the care, which includes the patient / carer, can act as a care coordinator. Since careworkers outside the specialized clinical centres have generally little experience with EB it is important for the patient / carer that there is someone he/she can go to with his/her questions and who guides the patient through the different care organizations and supplies information about the possibilities (this is also referred to as casemanagement). The casemanager knows who is responsible for the different aspects of care. The casemanager makes sure that the patient is able to take his/her own decisions through providing information and education.

It is important to make an agreement with the patient / carer about who will be acting as a casemanager. This may be a careworker of the specialized clinical centre. Another option is a primary health careworker who acts as the patient's / carer's casemanager and who has a better insight into the living conditions and social circumstances in the patient's surroundings.

Intramural coordination of care

In the clinical centre the EB-team appoints an intramural care coordinator for the patient. The tasks of an intramural care coordinator include to:

• organize intramural multidisciplinary deliberation (EB-

team);

• draw up an outline of the patient's problems in preparation

of the intramural deliberation;

• draw up an individual care plan, based on, among other

things, the standard care plan;

• inform the patient / carer about the care plan (in principle the patient / carer participates in the intramural deliberation in which the care plan is determined) and about the consequences of the care plan for the patient / carer. Agreements are also made with the patient / carer about the involvement of other disciplines (for example, primary health care disciplines, a rehabilitation centre);

• involve other disciplines in the treatment when necessary;

• organize a joint deliberation with all the people involved

(intra and extramurally);

• inform about the disease and its treatment all people

involved who have no experience with this particular patient category;

• draw up a referral for the primary health careworkers or

careworkers from other intramural organizations (the individual care plan is part of this);

• transfer the patient to primary health care disciplines or

other intramural organizations;

• offer adequate consultation opportunity to primary health

careworkers.

Coordination of primary health care

In the primary health care setting a care coordinator is appointed by the careworkers who are involved in the care.

The tasks of the primary health care coordinator include:

• to bring the activities of the careworkers involved into

line;

• if necessary, to organize a deliberation with the primary

health care team and the patient / carer;

• to make sure the patient is provided with the appropriate

materials (ointments, dressing materials, etcetera) at home;

• to accomplish adaptations to the living and working

environment;

• regularly realize evaluation of the care provided;

• to adjust the care plan when necessary;

• to make sure that communication to and/or consultation of

the careworkers in the specialized clinical centre is coordinated.

Case management

The care coordinator of the specialized clinical centre and the primary health care coordinator together consolidate the case management.

Individual care plan

A care plan is an instrument that may be used to determine the course of treatment and nursing and to match the care provided by the different careworkers.

The individual care plan provides insight into the limitations and handicaps observed by the careworkers and experienced by the patient.

The care plan is drawn up in immediate consultation with the patient / carer, with a focus on the objectives the patient / carer wants to achieve him/herself. On this basis, appointments can be made concerning the interventions.

A care plan is not an aim in itself but a means to:

• endorse individual care;

• clarify the responsibilities and their consequences in and for a care relation to both the patient / carer and careworker;

• be able to establish priorities;

• facilitate the interaction with colleagues and other careworkers;

• coordinate the care;

• evaluate the care;

• endorse continuity;

• facilitate reporting.

To be able to draw up an individual care plan the problems of the patient / carer are outlined first. Possible causes of the problems perceived or observed are worked out together.

When careworker(s) and patient / carer are united on the limitations / care needs, agreements are made about the interventions which should be performed in order to minimize the effects of the limitations.

In addition, the objective of care is determined and also who performs which intervention, how the care is evaluated and, when necessary, altered.

In order to facilitate the drawing up of an individual care plan a number of common problems has been converted into a Standard care plan (see chapter Standard care plan). The Standard care plan has been developed on the basis of talks

which were held with EB-patients and/or their carers and careworkers. It has been drawn up to give an idea of the specific limitations that were experienced by the particular patient category and caused by the Epidermolysis Bullosa. In addition, interventions have been described which were put forward by the people involved as a possible solution for the problem or in order to prevent the situation from deteriorating.