Epidermolysis Bullosa Home Care Standard care plan Multidisciplinary approach

Epidermolysis Bullosa may cause restrictions and impediments in several areas. This is why different careworkers, both intramurally and extramurally, are involved in the treatment of the EB-patient. It is important for the patient / carer that the care is consistent and that there are no overlaps or gaps. This can be prevented by matching the treatment / care policies of the different disciplines (multidisciplinary approach). In order to create concordance proper communication, between the careworkers in the intramural organizations (clinical centres), the primary health care setting and between the intramural organizations and the primary health care setting, is important. In the following sections the different multidisciplinary deliberations are described. The multidisciplinary deliberation is of course not an aim in itself. It is conceivable to create concordance in care differently, that is why it has also been indicated as to how this can be achieved by telephone.

Multidisciplinary deliberation clinical centre

The multidisciplinary deliberative body in the clinical centre includes the patient / carer together with among others, the dermatologist, the plastic surgeon, the rehabilitation specialist, the paediatrician and the nurse (the EB-team). Alternatively, depending on the patient's problems, other disciplines might be involved in the deliberation (for example, social worker, psychologist, physiotherapist, dentist, ergotherapist). The deliberative procedure might vary but it is recommended that an individual care plan is drawn up during the deliberation (see chapter Organization of care: Individual care plan). In preparation of the multidisciplinary deliberation an outline of the problems may be drawn up with the patient / carer. The discussion will be based on this inventory of problems. The different disciplines and the patient / carer come to joint agreements for the individual care plan. This individual care plan is part of the referral that is sent to primary health care settings and it forms the

starting point for the next multidisciplinary deliberation in the clinical centre.

During the deliberation, agreements are made for the coordination of care. This for is when the patient / carer coordinates the care and also when the patient / carer would like some support with this coordination. In addition, agreements are made about the (additional) information the patient / carer receives about the care plan that has been changed or drawn up.

On the basis of the care plan, it can be determined which primary health care disciplines must be involved and/or informed about the (adjusted) course of treatment / care. In addition, it is worked out whether a joint deliberation between primary health careworkers and the clinical centre needs to take place.

The agreements may be recorded in the logbook. This way the patient / carer is in charge of the information on the basis of which the agreements have been made and he/she may allow access to the agreements to other careworkers involved (see chapter Organization of care: Use of logbook and chapter Logbook).

Deliberation primary health care and clinical centre

When primary health careworkers are involved with the treatment / care of an EB-patient for the first time, it is useful to organize a joint deliberation between primary health careworkers and the staff of the clinical centre that is involved. This deliberation is organized by the coordinator of care of the clinical centre or the coordinator of care in the primary health care setting (see chapter Organization of care: Coordination of care).

An important function of this joint deliberation is to inform the careworkers who are not familiar with the disease and the effects of the treatment. The information from this home care programme may contribute to the exchange of information. In preparation for the joint deliberation, parts of this home care programme may be sent to the primary health careworkers involved.

In the deliberation attention is paid to:

• case history;

• the disease (see chapter Disease);

• the treatment of the patient (see chapter Treatment);

• the individual care plan (see chapter Standard Care Plan)

• continuation of the treatment at home;

• materials, provision of medication and materials (see

chapter Treatment: Adaptations to the living and social environment and chapter Materials & Medication);

• financing and provision of the materials (see chapter

Financing);

• instruction of the patient / carer (see chapter Expertise);

• use of logbook (see chapter Logbook);

• tasks and allocation of tasks relating to the treatment (on

the basis of the individual care plan);

• coordination of care (see chapter Organization of care:

Coordination of care);

• communication and exchange of information between the

primary and secondary health careworkers ( including the use of the logbook);

• opportunities to consult the intramural careworkers of the

specialized clinical centre by the primary health careworkers;

• round the clock accessibility;

• date of discharge;

• treatment evaluation;

• follow-up in the outpatients' clinic;

• possible visit to the community health centre.

The appointments are recorded (see chapter Logbook). A report might be made of the meeting which is subsequently sent to all the participants of the multidisciplinary deliberation.

The joint deliberation mentioned above may also be important when careworkers from other intramural organizations (rehabilitation centres, nursing homes, hospitals, medical paediatric day-care centres, etcetera) who have no experience with this patient category, become involved in the treatment.

Multidisciplinary deliberation primary health care

During the deliberation between the primary health careworkers and the staff of the clinical centre a plan is made of the activities by several careworkers. In order to achieve concordance in care it is advisable to plan a meeting with the patient / carer and primary health careworkers involved, for example, six weeks after discharge. For this deliberation, the staff of the clinical centre where the patient was treated might be invited as well. The primary health care coordinator will organize this meeting. During the deliberation the care plan, which was drawn up at an earlier stage, is discussed. It is evaluated whether the selected treatment, materials and medication used and other interventions (will) produce the intended result. When necessary the restrictions which were perceived are determined again, as are the interventions modified and the planning adjusted.

The interventions that fall short are also determined in order to take this into account in the future.

Telephonic concordance

Although a meeting of the intramural and extramural careworkers involved appears to be an effective and efficient method of informing careworkers that have no experience with the particular patient category, it is also possible to achieve concordance by phone for the continuation of care and to bring the different careworkers into line.

The intramural care coordinator may conclude after a consultation with the GP, the community nurse and/or other disciplines that a joint meeting is not feasible. The intramural care coordinator will then ask the primary health careworkers to appoint a coordinator who is responsible for the continuation of care at home.

When the decision has been made to achieve telephonic concordance sound written information (information about the disease, the individual care plan and a referral in which the case history and method of treatment are briefly described) is of even more importance. All aspects that come up for discussion should also come up in a telephonic deliberation.

The intramural and extramural care coordinator see to it that information is bundled and recorded intramurally and extramurally