N was born with a rare genetic condition called Familial Dysautonomia (FD) which is a malfunction of the autonomic nervous system, there are less than 20 similar cases in the country. In her teens N experienced complications following spinal surgery that resulted in paraplegia (loss of function of her lower limbs) which meant she now requires 24-hour care

Her care needs:

The autonomic system is responsible for control of the bodily functions not consciously directed, such as breathing, the heartbeat, and digestive processes. The most significant of these for N is maintaining her blood pressure. As a result, our clinical team worked alongside medical specialists to devise a care plan which would monitor and mitigate any complications as a result of N’s blood pressure instability

HFH built and maintain a core team of specialist carers around N, who in turn are supported by a dedicated Care Coordinator (CC) and a named Nurse Case Manager (NCM). Together the CC and NCM ensure any carers joining N’s established team are inducted in a controlled manner with clinical support and supervision through our in-house training academy, orientation shifts at the home and client specific competency assessment

This robust approach reinforces the importance of getting to know N as a person and that communication between care team members is critical to maintain N’s safety. This is because necessary care interventions or fluctuations in emotions could potentially cause adverse effects to N’s blood pressure