Our new community outreach nurse, Suzi O’Neill, is an extension of the current EB nursing team and is the link between the hospital and our families; allowing patients to get medical support and advice in the home.

Juggling the needs of the families is a real challenge.  A typical week for Suzi includes:

• Visiting families in their home allowing them to access more frequent nursing support without having to make a trip to Crumlin or St James’ Hospital which can often be very stressful for families.
• Assessing wounds – previous to Suzi, pictures were sent to hospital medical teams which could take longer to diagnose. Suzi can advise whether a patient needs to be moved to hospital for further treatment.
• Training nurses in the community to help care for a child with EB. The more nurses we train in EB, the more help we will have to look after patients in the community.
• Visiting families with a new born EB baby and putting a comprehensive care package in place.
• Advocating for a new born baby to get 20 hours home nursing care – a huge win.
• Meeting with the DEBRA family Support Worker to discuss and coordinate cases we share.
• Organising her English Nursing Registration so families in Northern Ireland have the same access to home visits.

Suzi’s role is making a huge impact for improving care and support for EB families.