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.