- Carla and Noa have a rare, degenerative and incurable disease that causes extreme fragility of the skin. They are subjected to painful daily treatments that can last up to four hours. These treatments are required to disinfect and bandage the open wounds and blisters covering their entire body.
- Health care centre Santa Mónica de Rivas-Vaciamadrid, the primary care management in Madrid and the ministry of health all rejected the petition of access to specialist care from nurses in their own home.
- Home nursing care visits are currently offered to several other families with Butterfly Skin in the regions of Madrid, Andalucía, Valencia, Aragon, Catalonia and the Balearic islands.
- On European patients rights day the Butterfly Children’s Charity requested the right to access care and treatment for this family, and for all families with Butterfly Skin and insist that patients play an active role in making their own health care decisions.
The Butterfly Children’s Charity petitioned the minister for health to request the right to home visits from nursing staff for the 6 year old twins with Epidermolysis bullosa (EB) or Butterfly Skin, in Madrid: EB is a rare, degenerative and currently incurable disease that affects 500 people in Spain. Having been denied this request DEBRA raised their voices once again to reach out to the authorities to appeal for the care that is key to improving the quality of life for both the twins and their family.
“Carla and Noa are subjected to between 3 and 4 hours a day of wound care treatment” to protect the wounds and blisters which are caused by even the lightest touch. “Their skin is missing the protein it needs to protect it”, explained Evanina Morcillo Makow, director of the charity. In addition to these daily treatments the twins are frequently in and out of hospital as they suffer from open wounds that cover 90% of the surface of their skin. The wounds also affect the internal linings and organs leading to severe disability and constant pain.
The local health authorities are insisting that the parents are able to care for the twins at home and that the local health care workers will only treat them according to the plan outlined for them from birth. This decision has caused significant distress for both parents, Pedro Ricote and Verónica Soriano. The family have fac “We have been acting as nurses and carers for our children more than as parents for the last 6 years and we desperately need the help and support of professional health care workers in the home to help us cope with the traumatic daily treatments required by the girls”
An unfair decision
The charity does not accept or understand this decision as they have managed in the past to guarantee home visits for children with Butterfly Skin, including children with less severe forms of the disease in other regions in Spain.
There needs to be much greater involvement in the management of care for individual patients from local health authorities to enable them to make decisions based on the specific needs and requirements of patients. Children and their families should be based at the centre of care plans and must be able to personally contribute to the decisions made in relationship to the care they need.
This is not an isolated case
Other cases are currently under review and are being pushed by the charity like the case of Juan Antonio Lopez (36) from Seville who has Dystrophic recessive Epidermolysis bullosa. Having requested long-term home care help he was told that the care he was currently receiving was adequate to his needs. However, Antonio currently has help 3 days a week, but the care provided is inconsistent and precarious at best. With carers on temporary work contracts with no cover for illness or holidays his mother has to step in and care for him on a regular basis.
EB is a rare condition and as a consequence the nurses who are sent out to support him have little or no experience in treating the disease and therefore rely on his mother for taining. “As the carers are temporary workers they normally leave as soon as they have learnt how to dress the wounds correctly and then the whole process starts again” said Antonio.
Alvaro Villar, DEBRA nurse stated “that this particular condition requires constant care from specialist nurses and that it is not acceptable for the level of care to diminish because of the changes in nursing staff” Patients are extremely vulnerable and specialist care is essential. Home care is fundamental to improve the quality of life for patients and their families.