Sam’s Story


Exhausted mum (3)

Sam is a lovely 3-year-old boy who lives at home with his parents.

Before coming into our care, he was diagnosed with a rare genetic condition called HUWE1. This comes with many different health issues, such as speech delay, intellectual disability, and global developmental delay. Sam also has a range of health conditions, including reflux/vomiting, sleep difficulties, reduced mobility, drop attacks and epilepsy. His condition makes it difficult for him to communicate.

HFH Healthcare were commissioned to meet Sam’s health, essential, and basic self-care needs when he came into our care in January. His clinical requirements include enteral feeding via a new PEG in situ, seizure management and medication administration.

Sam’s family had not previously received any commissioned support for their son, and they were very anxious and apprehensive about this transition. Both parents were exhausted from delivering all care up until this point and had no local family network to provide any respite for themselves.

Our team understood it would take an initial period of time for the Nurse Case Manager and specialist-trained carers to build trust with Sam and his parents. Initially, our caregivers were prioritised to shadow Sam’s family during the day, allowing them to become familiar with him and his routine and for Mum and Dad to get to know the team. As Sam and his family became confident with their core care team, the team then progressed to delivering waking night care.

The care package has been very successful so far. Our team of nurse-led carers have calmed Sam’s parents’ anxieties by rigidly following his complex care plan to ensure his needs are always met. Sam has new challenges during these first months, including an epilepsy diagnosis and a new medication regime, however the team has adjusted and built a lovely bond with him. Our caregivers have also collaborated closely with Sam’s physiotherapist, learning his routine following a scheduled procedure.

Sam’s care plan is successful thanks to the trust, patience, consistent communication, and thorough understanding of his needs. His parents have trusted our carers so much that his Mum even felt confident to make a significant trip abroad whilst our care team supported Sam and Dad at home.

As a result of the work completed by our caregivers, Sam’s parents are now feeling much more supported. The care provided has positively impacted their family situation.