Wexford Mother Says Son With Complex Medical Needs Is Falling Through Gaps in HSE Services

A Wexford mother says her 19-month-old son has been left "falling between services" as she struggles to access essential healthcare through the HSE.

Rebecca Murphy says her son Alfie, who has complex medical needs, is dependent on a nasogastric (NG) feeding tube and has been diagnosed with Global Developmental Delay. She says he cannot meet his nutrition, hydration or medication needs by mouth.

Rebecca says when oral feeding was unsuccessful, Alfie became critically ill, suffering dehydration, hypoglycaemia, starvation ketosis and nutritional deficiencies before tube feeding was introduced.

Despite his ongoing needs, she says there is still no clear HSE pathway for his long-term feeding plan and the family has been left without consistent local paediatric dietetic support.

As a result, Rebecca says they have had to pay privately for a CORU-registered paediatric dietitian and a CORU-registered speech and language therapist to ensure Alfie receives the care he needs.

Private specialists have since advised that Alfie meets the criteria for Paediatric Feeding Disorder and have recommended an urgent gastroenterology assessment along with a review for PEG feeding. However, Rebecca says the family is still struggling to access the appropriate referral pathway.

She believes Alfie's experience highlights broader issues affecting families of children with complex needs, including delays and gaps in disability services, Assessment of Need processes, dietetics, speech and language therapy, occupational therapy and long-term tube-feeding supports.

Rebecca says parents are often left coordinating care themselves while children are passed between hospitals, community services and waiting lists.

She says the situation has now reached the point where political representatives and South East Healthcare are involved because the family's circumstances have become unsafe and unsustainable.

Speaking publicly to raise awareness, Rebecca says she hopes no other family has to experience the same uncertainty.

"Alfie is not waiting for extras, he is waiting for essential care," she said.