Project dedicated to Paola Zotti and Vittorio Arrigoni

Reporting period: October 2011 – May 2014

Preliminary phase (needs assessment, development of project proposal, operational and financial feasibility study)
Gaza Strip/Italy, October 2011 – May 2012

During the month of October 2011, DEBRA ITALY was informed of the critical conditions of some children affected by EB in the Gaza Strip and the lack of social and health assistance. DEBRA ITALY reported the situation to the professionals of the Multidisciplinary Center for the diagnosis and treatment of Epidermolysis Bullousa of the Children's Hospital Bambino Gesù (OPBG). Professionals stressed the scarce benefit that patients would gain with a short hospitalization period abroad and the need of providing them with a locally-based specialized and continuative assistance.

The information gathered from physicians and medical facilities in the Gaza Strip have revealed:
• the lack of specific knowledge of the healthcare professionals on the treatment of blisters and extracutaneous complications;
• the absence of an institutional program of information and surveillance of the disease;
• the weakness of the communication channels between the different levels of healthcare and among the specialists working at different health facilities;
• the absence of an integrated network of assistance for patients and their families. Once EB is diagnosed (clinical diagnosis), indeed, children remain confined within their own families.
Based on the identified needs and in collaboration with the Dermatology Units of the Gaza Strip and the Ministry of Health, a preliminary survey of EB cases was carried out . In parallel, a project proposal was developed and submitted to DEBRA ITALY with the aim of proving local specialists with the adequate knowledge of all the aspects of management of EB and granting patients’ access to services, both in terms of health care and social assistance.

I. Project Activities (phase I and phase II)

Phase I (June 2012 – May 2013)

1) Signature of a Memorandum of Understanding (MOU) with the OPBG
DEBRA ITALY and Children's Hospital Bambino Gesù signed a cooperation agreement that defines the medical and scientific collaboration between the Italian and the Palestinian specialists within the project framework. The MOU includes missions to Gaza of the Italian specialists working at the Multidisciplinary Center for the diagnosis and treatment of EB and the remote support for the follow up of diagnostic and therapeutic protocols.

2) Signature of a Memorandum of Understanding (MOU) with the Ministry of Health (MoH)
DEBRA ITALY has received the official approval of the project by the Ministry of Health of the Gaza Strip which has expressed its commitment to facilitate the implementation of the activities. A MOU defining the mechanism of cooperation between the parties was signed and remains valid for the whole project duration.

3) Creation of a database of EB patients
Following the preliminary survey conducted by DEBRA ITALY during the feasibility study of the project (October 2011- May 2012), a public announcement to identify cases of EB was published in a local newspaper. Patients who responded to the advertisement were visited at the Dermatology Unit of Al Shifa hospital in Gaza City and recorded.The patient database is regularly updated once new cases are identified.

4) Establishment of a Multidisciplinary Team (MDT)
DEBRA ITALY has coordinated with the Ministry of Health and Al Shifa Hospital the nomination of the members of the Multidisciplinary Team.

5) Participation at the ‘EB Clinet’ Conference
The Head of the Dermatology Unit of Al Shifa Hospital, Dr. Majdy Naim, referent of the project promoted by Debra Italy in the Gaza Strip, has participated to the 'EB Clinet' conference which was held in Salzburg (Austria) on 5-7 October 2012.

6) Italian professionals’ missions to Gaza (Children’s Hospital Bambino Gesù - Rome)
First Mission to Gaza
Period of mission: 29/01 - 03/02/2013
Activities carried out during the mission:
• Training and guidance of the local Multidisciplinary Team
• Meeting with patients and their families
• Visit to patients and training of the nursing team on best practices for skin and wounds care
• Definition of protocols of assistance and therapeutic plans

Second Mission to Gaza
Period of mission: 19 - 21/05/2013
Activities carried out during the mission:
• Esofageal dilation
• Evaluation of the implementation of the assistance protocols suggested during the first mission

7) Evaluation of the availability of products for skin and wound care and free-of-charge access for patients
The availability of the products needed by patients for skin and wound care was evaluated by DEBRA ITALY in coordination with Italian EB specialists, the Dermatology Unit of Al Shifa Hospital and the local Ministry of Health. Under the request of DEBRA ITALY, the Ministry of Health has granted free-of-charge access to products for skin care to the patients. However, it has denounced the shortage of the needed disposable materials for dressing and patients never receive the adequate quantity of products included in their treatment plan. Monitoring and evaluation of the products provided to patients by the public health system is regularly carried out and reveals that patients do not receive adequate quantities of the needed materials and some of the products are not delivered to them because unavailabe. 

8) Starting up and monitoring health services for patients (clinical follow-up, physiotherapy and dressing assistance service)
Following the mission to Gaza of the Italian EB specialists, protocols for clinical follow-up, physiotherapy (and respiratory rehabilitation) and skin and wound care were started to be applied. Children suffering from Dystrophic EB whose families have difficulties in autonomously caring about blistering refer to the nursing staff that was trained on treatment of skin lesions by the Italian specialists. DEBRA ITALY supports patients’ access to medical services by facilitating dialogue with the health facilities and healthcare personnel, accompanying patients and providing them with the transportation service to access the health faclities. 

9) Regular home visits to patients and their families
Home visits to all the patients were regularly carried out to better know their family context and build a trusting relationship while sharing concerns, experiences and feelings, debate certain issues and problems related to the management of EB. Home visits have also helped to gain specific knowledge of the different symptoms reported by each patient, their attitudes towards integration, preferences, social skills, but also the weaknesses and physical disabilities, different from patient to patient according to the type of EB.

10) School Integration Program (2012-2013)
Children who have never gone to school were involved in a summer educational course during the period June - August 2012 and were integrated in kindergartens starting from the month of September 2012. Monitoring and evaluation of the impacts of the integration process and children’s response (acceptance and participation) was regularly conducted in coordination with the families and the teachers.

11) Promotion of social gatherings with patients and relatives
Social gatherings carried out during the summer period (June – August 2012) were organized to allow patients and relatives to know each other. Patients and families, indeed, met each other for the first time during those events. Social gatherings have given patients and relatives the opportunity to develop friendships, built social network, gain emotional support, share experience and reducing feelings of aloneness.

Phase II (June 2013 - May 2014)

1) Setting up of a patient support group
With the aim of giving continuity to the activities promoted by DEBRA ITALY and given the interest of patients, family members, teachers, volunteers and healthcare professionals in forming a patient support group, a non-profit organization was established. The local association, composed by patients and their families, volunteers and the medical and nursing staff involved in the program activated by Debra Italy, named 'Rare Skin Diseases Association - Gaza', is legally registered in the Gaza Strip. The Association aims at promoting health and social care not only for people with EB, but also for people with other rare skin diseases.

2) Medical-scientific support program (Debra Italy – OPBG – Gaza Strip)
The medical-scientific collaboration between the Children’s Hospital Bambino Gesù (OPBG) and Al Shifa Hospital is still on-going (clinical follow up, genetic counseling and evaluation of extracutaneous complications).

3) Participation at the International Conference Debra 2013
The responsible of the EB program promoted by DEBRA ITALY in the Gaza Strip and Dr. May El Hachem (Children’s Hospital Bambino Gesù) have presented the activities of the project promoted in the Gaza Strip at the International Conference Debra 2013 which was held in Rome from 20 to 22 September.

4) Provision of products for skin and wound care
Given the shortage of materials needed for skin and wound care at the local health facilities, DEBRA ITALY has purchased a supply of materials for dressing and deliver them to the local 'Rare Skin Diseases Association' which will distribute them to patients according to their needs.

5) Provision of medical shoes and clothes
Medical shoes were produced for patients in partnership with a manufacturer of orthopedic shoes in Gaza. The shoes design was made in strict collaboration with patients, considering their advices and their suggested changes to be applied to the design, DEBRA ITALY has also provided clothing for those children living in the poorest conditions.

6) Home visits to patients
Home visits to patients and their families were regularly carried out as during the phase I of the project.

7) Summer program of recreational activities for children and social gatherings for patients and families (June-August 2013)
In partnership with the Tamer Institute for Community Education of Gaza, weekly recreational events were organized for all the children affected by EB. The program included creative workshops (painting, music, story reading and theater). The activities were organized and supervised by DEBRA ITALY and the members of the local ‘Rare Skin Diseases Association’.
In the same period, recreational and social events for children and their families were organized.

8) School Integration Program (2013-2014)
In the framework of the School Integration Program promoted by DEBRA ITALY, the following activities were carried out:
• Selection of school facilities
• Meetings with the school teachers and the referring physician (Dr. Majdy Naim)
• Meetings with teachers and the parents of the children affected by EB
• Awareness events of the class
• Development of guidelines for the school teachers
• Training and guidance of a tutor assigned to the daily assistance of the children in the school
DEBRA ITALY has provided the school facilities with fans for the class, pillows for the chairs and EB kits.
DEBRA ITALY supports their access to education by supporting financially the school fees, the educational material, the transportation cost (taxi) to reach the school facilities and the daily presence of the tutor at school.

9) Supervision and evaluation of the school integration process
Monitoring and evaluation of the integration process and the response of children (acceptance and participation) is regularly carried out together with the families of the children and the school/kindergarten teachers.

10) Evaluation of the health services (patients’ follow-up, physiotherapy and skin and wound care assistance)
The protocols of assistance defined by the Italian and Palestinian health care professionals are constantly monitored:
• Clinical follow-up of patients at the Al Shifa hospital (Dermatology Unit)
• Access to physiotherapy service
• Practices for skin and wound care, including availability of products (home practices, dressing support services at heath facilities).

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