Peter's Story

image_3Complex Needs from Birth

Born prematurely at 37 weeks and never taking a spontaneous breath, Peter immediately required mechanical ventilation. Within 48 hours of being born, Peter was transferred from his local hospital to a tertiary centre over three hours away. For the next two years, Peter predominately remained at this centre, while his parents juggled managing home life and being present at the hospital.

Peter was diagnosed with Central Hypoventilation Syndrome (CHS), a condition which significantly effects breathing. This means he has regular respiratory arrests and has to be manually ventilated during these periods.

Due to prolonged periods in hospital and a tracheostomy tube from birth, Peter also developed an oral aversion, meaning he required a Percutaneous Endoscopic Gastrostomy (PEG) for nutritional support.

With around the clock care needed and the hospital environment not being a suitable environment for a prolonged period, both in terms cost effectiveness and developmentally, a long-term solution was needed.

Over Two Years In Hospital: regular respiratory arrests

 

Service – Paediatric nurse led service to bring his home

A number of attempts were made to build a care package to facilitate Peter’s return home, but the expertise or suitable staffing weren’t available through other providers.

Experience Needed: HSE needed a partner with the required expertise to bring Peter home

 

Resilience Care was selected as the HSE’s partner of choice to provide a service to reunite Peter with his parents and siblings, which up until then were divided by over 150 miles, and the complications that brings.

With Resilience Care’s proven background in providing complex homecare packages across Ireland, it was able to agree and mobilise an effective care plan and transition. With a base in Dublin, close to the tertiary centre, Resilience was able to plan the transition on the ground.

At the same time, our Nurse Manager undertook a holistic onsite assessment of the family home. This incorporated examining Peter’s medical needs, his home environment and available equipment.

There were also a number of logistical elements to put in place for a safe service, including:

  • Air retrieval plan due to remoteness of family home
  • Flagging with National Ambulance Service
  • Priority re-connect electricity to the house in the event of a blackout
  • Emergency plans for respiratory arrest
  • House structure and layout changed to meet Peter’s needs
  • Advise/information (for staff and family) in relation to the family home becoming a workplace
Consistent Service: model of recruiting a permanent team means a reliable service with retention of skilled staff

 

An experienced team was then recruited to provide a clinically governed model of care aligned to our Nurse Manager’s assessment. A rigorous process was used to ensure suitable staff were put in place with the required skillsets. As part of the on-boarding process, exhaustive internal and external training programmes were initiated. These programmes ensured that a sustainable and effective service could be put in place.

At the head of this team is a Paediatric Nurse Manager to oversee the day to day care package. They line manage the staff, monitor rosters and carry out regular reviews to maintain the professional development of each team member, and to ensure delivery of best practice in all aspects of care provided. They work in partnership with the HSE and other stakeholders (PHN, GP, hospital, EIT, school, family etc.), to collectively ensure optimal wider supports.

With everything in place within an agreed timeframe with the HSE, Resilience Care safely transitioned Peter home for the first time in over two years.

Outcome – A Bright Future Ahead

Peter now lives comfortably at his family home, spends quality time with his parents and has time to play with his siblings. Having been reliant on mechanical ventilation 24/7 from birth, Peter now only requires support when napping and at night time. This independence means that Peter is now able to walk and interact more freely with his environment, and is able to eat naturally without relying on a PEG. Peter, who previously had to use Làmh (a modified sign language), is now able to use a speaking valve and have a full conversation.

 

From Hospital to Home: Peter now goes to his local school every day

 

With Resilience Care’s help, Peter is also now attending pre-school full time. Our nurse attends with him and school staff have undergone training to provide a safe and supportive learning environment for him. The family also have regular holidays and Resilience Care provide additional supports for the parents to receive vital respite breaks.

Challenges along the way

  • Ensuring a reasonable level of expectation is set at the outset on the role/scope of the care package.
  • With such a large care package, to monitor for over reliance, which can be unhealthy in terms of family independence.
  • With a huge dependency on the care package to keep Peter at home, having contingency plans for staff sickness/vacant posts is essential.
  • With Peter’s evolving needs, working with the commissioner to meet these changing  needs, but within available funds.