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Epidermolysis Bullosa
Home Care Programme

Organization of care Introduction

For the development of the Home Care Programme Epidermolysis Bullosa the experiences of patients, carers and careworkers were used in particular. These experiences were gathered through literature study and interviews. The interviews demonstrated that carers must prevent inconsistencies, overlaps and gaps in the care for the patient / carer.

This chapter describes what the care organization could look like, important aspects of this and how the information and instruments from the different chapters of this home care programme may be used to support the organization of care.

Before this is discussed, a number of features of the disorder Epidermolysis Bullosa and a number of features of the treatment / care of EB-patients will be mentioned. These features partially determine the way in which the care should be planned.

 

Features of disorder and care

The following features of the disorder Epidermolysis Bullosa determine how the care should be organized:

• the disorder cannot be cured;

• the disorder might be progressively exacerbating;

• the disorder is not very common;

• the symptoms and problems are manifested in different forms

and degrees;

• sometimes the symptoms are manifested directly after birth and in other forms not until a later age.

The features mentioned above also mean that:

• the patient, parent / carer and/or partner are the main actors in the treatment / care;

• the patient, parent / carer and/or partner regularly need

professional support (of hospital staff, rehabilitation centre, home care, etcetera);

• in the treatment / care often several disciplines and careworkers are involved (specialist, nurse, dietician, physiotherapist, social worker, ergotherapist, GP, community nurse, pharmacist, employment officer, etcetera);

• knowledge about the disorder and the treatment / care of the disorder is confined to a number of clinical centres;

• it is difficult to formulate a general standard for the performance of the treatment / care. Each patient requires specific treatment / care;

• the necessity and intensity of the treatment / care may vary from day to day or during the course of the day;

• there are often a lot of different materials (dressing

materials, ointments, aids) and measures required concerning adaptations to the living, working and social environment;

• financing of the necessary aids and alterations is often not part of the normal provisions.

 

Aspects of the care organization

Because of the features of the disorder and the treatment / care the important aspects in the organization of care are:

• key role of patient, parent / carer in the care provided and as source of information;

• `guidance' of the treatment / care by specific clinical

centres

• transfer of knowledge of the specialized clinical centres to other careworkers and organizations involved;

• concordance and communication between the careworkers involved.

 

 

Key role of patient, parents / carers

In general the EB-patient him/herself and/or parents / carers are the ones that have a lot of experience with the treatment / care and are well informed about the way the treatment / care should be performed, and also about the effects a certain treatment or procedure may have. The patient and/or carer is therefore, an important source of information and should be involved directly when the course of treatment / care and individual care plan is drawn up. The patient and/or carer is also pre-eminently suitable for the coordination of care. They are supported in this by careworkers who lead the way through the labyrinth of the health service.

Clinical centres

The diagnostics and the establishment of the course of treat-ment take place in a limited number of clinical centres in the Netherlands. In these centres several disciplines and care-workers are involved in the care, for example, (pae-diatric) dermatologist, plastic surgeon, nurse, social worker, physio-therapist and ergotherapist.

EB-patients are usually treated throughout their life by medical specialists and other specialized careworkers in these centres. That does not mean that careworkers from other intra-mural health organizations (hospitals, nursing homes, reha-bilitation centres, medical (paediatric) day-care centres, etcetera) will not encounter EB-patients and primary health careworkers will also be involved in the treatment and care. The careworkers from the specific clinical centres will de-termine together with the patient and/or carer whether others need to be involved in the care and they will, in principle, also see to it that the people involved are well- informed.

Transfer of knowledge

As mentioned before the knowledge about the disorder and ex-perience with the treatment / care is confined to a number of clinical centres. In order to treat / nurse / care for the patient properly at home and in other intramural health orga-nizations, it is important that the knowledge of these centres is also accessible to others. The information of this home care programme may be used (parts or entirely) to inform others (involved careworkers) about the disorder and its treatment.

Concordance and communication

Depending on the nature and complexity of the patient's pro-blems, more disciplines / careworkers can be involved, both intramurally and extramurally or both, in the treatment and care. In this situation concordance and proper communication about the careworkers' tasks is important. A number of instru-ments, which is important for the communication and concor-dance about tasks, will be further discussed in this chapter. The subjects are:

• multidisciplinary approach;

• coordination of care;

• use of an individual care plan;

• logbook.