Our specialist team has continued to work despite the global pandemic, ensuring that families are supported with access to remote advice at all times. Some cases require urgent care and face to face attention: the birth of a baby with Butterfly Skin, when a child needs to be admitted to hospital or to undergo surgery, in these cases our specialist team of healthcare workers travel to be at their side.
From January to March they made 12 visits to places like Pamplona, Albacete, Seville, Madrid, La Coruña or Malaga. Below we would like to provide some detail on how they have helped.
DEBRA psychologist, Nora, underlined that in a world that is so totally obsessed with speed and immediate results, it is really important to stop and take the time to determine the needs of others, to confront problems and situations in a unique and individualised way. Giving the gift of time when you can.
Confronting Butterfly Skin is not easy: when a baby is born families are consumed with distress, anxiety and guilt. At DEBRA we take a progressive approach to working with families so that we can address their fears, help them to accept the situation and provide them with the tools required to confront this condition. Working in the present and concentrating on the here and now, but always looking ahead.
By taking small steps, families begin to gain the strength that they need to overcome the very many difficulties that they face with the support and guidance of the mental health team. One of the main concerns is always the anxiety and distress that comes with the process of daily wound care for a child. Communication, the ability to stay relaxed and distraction techniques are key to making this experience less traumatic. Our psychologists take great satisfaction from seeing how our families grow in confidence.
When a baby with EB is born our specialist team of nurse’s travel to be with families as quickly as they can.
As well as providing comprehensive information on the characteristics of dealing with this condition they show families and medical staff how to disinfect, treat and bandage wounds and make sure they are aware of the necessary steps that must be taken to ensure good wound care: from recommending the best bandaging materials to how to bathe them.
Throughout the last few months nurses have also provided follow up services to new-borns to check on how they are doing and to ensure that families continue to feel supported and cared for.
Nurses from the charity have also looked after a number of children in hospital and been on site for numerous hospital interventions. “These are really challenging times that require perfect interaction between the patient and medical team. Instilling confidence and showing patience, empathy and kindness are fundamental” said DEBRA nurse, Esther, who has recently been on site for two operations to help with the organisation, support the surgeon and advise both the medical staff and the families throughout the whole process.
The team of social workers are key to these visits.
As well as the physical and mental support, families require the help of social workers to advise them on how they can access social care and services to improve their quality of life.
They provide a link to local health care resources to try and cover all of their health care needs.
They ensure that families always have access to wound care essentials from their local surgery and they guide them in the administrative processes to request disability certificates, allowances and home care visits.
As well as helping to train the health care teams at the different hospitals and local doctors surgeries the team also recently trained a new nurse at the Hospital Sant Joan de Déu in Barcelona, instructing her on wound care treatment and the best products available for patients with EB.