Brandon’s Story

Brandon's Story

Brandon is a 14-year-old boy with a life limiting disease called Infantile Batten Disease. His family have been caring for him for by themselves for the last 12 years since his diagnosis. Following a recent assessment by the local NHS Integrated Care Board that Brandon’s care needs qualified him for care support, it took his family over a year to come to terms with accepting care provision.


Young boy with Infantile Batten Disease


HFH Healthcare were commissioned to meet Brandon’s clinical, essential, and basic self-care needs.

His health requirements include enteral feeding, oral suctioning, seizure management, oxygen therapy, the use of nebulisers and medication administration. The team also take responsibility for consumables, postural management and wound care.

Our team of carers were given a fast turnaround of 2-3 weeks, and when they started the care package with Brandon, his family immediately stepped back. Mum was unwell and Dad is partially sighted, and both were exhausted, in desperate need of respite. Our Nurse Case Managers spent each day working with Brandon & the carers, so they were well prepared regarding Brandon’s care routine and preferences which helped to get to know him as quickly as possible.

Brandon’s needs are intensive; he requires constant monitoring & interventions, and being able to use clinical judgement is a key part of his daily care. His core team of regular nurse-led carers have worked well with Brandon to learn the specifics of his individual care requirements, while ensuring they bond with him and his family to reduce the anxieties of accepting care for the first time.

Initially, Brandon’s parents were worried about having carers in their home, but as time has gone on, their trust has increased greatly. Brandon has been taken out for walks, accessing the world beyond his bedroom, and Mum & Dad have had more freedom, for example, they’ve been able to go out on shopping trips together for the first time in years.

Vitally, since Brandon has come into our care, he has appeared much healthier. He seems more comfortable, is spending more time out of bed, and is clinically stable with markedly improved chest management after months of ill health.

Mum and Dad have expressed their gratitude to our team: “The carers are amazing; we are so grateful for all their hard work.”