NHS denies home nursing care to 6-year-old twins with butterfly skin

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National Health Service denies home nursing care to 6-year-old twins with butterfly skin (epidermolysis bullosa)

  • Carla and Noa have a rare, degenerative and incurable disease which causes extreme fragility of the skin. They are subjected to painful daily treatments that can last up to four hours. These treatments are needed to disinfect and heal open wounds and blisters covering the entire body.
  • The Santa Mónica de Rivas-Vaciamadrid health center, the direction of primary care in Madrid and the health ministry have all rejected the petition for access to specialized care from home nurses.
  • Nursing home visits are currently offered to several other families with Butterfly Skin in the regions of Madrid, Andalusia, Valencia, Aragon, Catalonia and the Balearic Islands.
  • On European Patient Rights Day, Butterfly Children’s Charity demanded the right to access care and treatment for this family and all families with butterfly skin and insisted that patients take an active role in making their own health care decisions.

Sunday April 18: The Butterfly Children’s Charity has asked the Minister of Health to demand the right to home visits by nurses for 6-year-old twins with epidermolysis bullosa (EB) or butterfly skin, in Madrid: l ‘EB is a rare, degenerative and currently incurable disease that affects 500 people in Spain. After being denied this request, DEBRA once again raised its voice to contact the authorities to request essential care to improve the quality of life of the twins and their families.

“Carla and Noa undergo between 3 and 4 hours per day of wound care” to protect wounds and blisters that are caused by the slightest touch. “Their skin lacks the protein it needs to protect it,” said Evanina Morcillo Makow, director of the association. In addition to these daily treatments, the twins frequently have to go to the hospital as they suffer from open sores that cover 90% of their skin surface. The sores also affect the internal walls and organs, causing severe disability and constant pain.

Twins butterfly skin

Local health officials insist that parents are able to care for the twins at home and that local health workers will only treat them according to the plan defined for them from birth. This decision caused great distress to both parents, Pedro Ricote and Verónica Soriano. The family went to college “We have acted as nurses and caregivers for our children more than parents for the past 6 years and we desperately need the help and support of home health professionals to help us cope with traumatic daily treatments. required by girls “

An unfair decision

The charity does not accept or understand this decision as it has in the past been successful in securing home visits for children with butterfly skin, including children with less severe forms of the disease in other areas. other regions of Spain.

Local health authorities need to be much more involved in the management of care for individual patients to enable them to make decisions based on the specific needs and demands of patients. Children and their families should be placed at the center of care plans and should be able to personally contribute to decisions made about the care they need.

This is not an isolated case

Other cases are currently being studied and pushed by the charity, such as the case of Juan Antonio Lopez (36) from Seville, suffering from dystrophic recessive epidermolysis bullosa. After seeking long-term home care, he was told that the care he was currently receiving was tailored to his needs. However, Antonio currently has help 3 days a week, but the care provided is inconsistent and insecure at best. With caregivers on fixed-term contracts without health or vacation coverage, his mother must intervene and take care of him regularly.

Twins butterfly skin

EB is a rare condition and therefore the nurses who are sent to support him have little or no experience in treating the condition and therefore depend on his mother for training. “As the caregivers are temporary workers, they normally leave as soon as they have learned how to properly heal wounds, and then the whole process starts again,” said Antonio.

Alvaro Villar, DEBRA nurse said “this particular condition requires constant care from specialist nurses and it is not acceptable that the level of care decreases due to changes in nursing staff”. Patients are extremely vulnerable and specialist care is essential. Home care is fundamental to improving the quality of life for patients and their families.

About DEBRA the Butterfly Children’s Charity

The Butterfly Children’s Charity is a non-profit organization founded in 1993 by the parents of a child with epidermolysis bullous (EB). The aim of the association is to improve the quality of life of families with EB in Spain. The team of specialized workers is there to guide and advise families and health professionals, as well as to work on research and medical advances to make this disease more bearable. The association also helps to raise awareness of the disease and the difficulties and obstacles encountered on a daily basis.

EB is known to be the most painful condition you’ve never heard of About epidermolysis bullosa (butterfly skin)

EB is a rare, incurable, genetic disease caused by the extreme fragility of the skin. It currently affects 500 people in Spain. The skin acts as our first line of defense against the outside world, but in the case of children with EB, their skin is as fragile as a butterfly’s wing. The lightest touch causes painful blisters and open sores. The daily dressing to protect the skin can take up to 5 hours a day and is so painful that morphine is needed. This rare disease causes extreme disability and constant pain; the simple act of eating and walking is often accompanied by severe pain and distress.


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