R is a young boy who was referred to us, aged 5, due to his Spinal Muscular Atrophy (SMA) Type 1, which affects motor neurons in the spinal cord causing progressive muscle degeneration and weakness

His care needs:

HFH Nurse Assessors worked in partnership with R’s family and NHS commissioners to structure an appropriate package of care to support R’s healthcare and developmental needs. When we first met R, he needed non-invasive ventilation (NIV), regular suctioning and monitoring of his chest secretions to prevent infections. R had a Nasogastric (NG) tube in situ receiving feed via a pump to ensure his nutrition and hydration needs were met

It was very important to build a core team of specialist carers around R and the HFH Clinical Team oversaw all recruitment for the package of care. To reassure R, it was critical that regular and friendly faces could build his trust and this enabled the team to fully understand his individual needs and methods of communicating

His dedicated Paediatric Nurse Case Manager (NCM) regularly visits the home to manage all aspects of the care package, work alongside the care team and offer real support to R and his family. The NCM has also built close working relationships with the other professionals in R’s community multidisciplinary team. Together they regularly review R’s care to ensure his package meets his needs, enables him to achieve his goals and remain safely at home

The nature of R’s condition being progressive, means that he now requires additional airway management via tracheostomy. In response, HFH have trained and upskilled his team, ensuring excellent continuity with the carers that he knows