The challenges faced by the parents of a teenage boy with a rare genetic condition were highlighted as they shared their struggles of getting adequate care for their son. Lucas, 13, from Stoke-on-Trent, is among a handful of children worldwide with the CNKSR2 genetic disorder, which manifests as regular seizures requiring constant attention. Despite having a social care package for daytime support, his family is advocating for an NHS continuing care funding package to cover overnight care.
After a prolonged confrontation with the NHS Midlands and Lancashire Commissioning Support Unit, a proposition of two overnight carers was settled upon. Unfortunately, no care provider is willing to undertake the contract, further complicating matters as there remains a disagreement over whether the staff can be in physical contact with Lucas during the night, a critical requirement for his family. As a non-verbal individual with epilepsy who is fed through a stomach tube, Lucas necessitates one-on-one supervision at all times due to his active sleeping habits, which have led to incidents necessitating medical intervention.
Andy, Lucas’s father, who left his job to prioritize his son’s care, expressed the toll it has taken on the family, with only four to five hours of fragmented sleep each night, straining them both mentally and physically. The ongoing dispute regarding the assessed care package has added to their burdens, as they seek a balance between quality of life and ensuring Lucas’s well-being. Despite assertions from the NHS Midlands and Lancashire Commissioning Support Unit of addressing delays, the family remains frustrated with what they perceive as a lack of understanding regarding their son’s needs.
The family emphasized the urgency of reaching an agreement on an appropriate overnight care package to enhance their overall quality of life. Becci, Lucas’s mother, reflected on the draining nature of their daily struggles while acknowledging the unwavering commitment they have as parents to advocate for their son. As they navigate through the complexities of the healthcare system, the family remains hopeful that their voices will be heard and that the necessary support will ultimately be provided
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