Emergency homecare for a child with Adrenoleukodystrophy (ALD)

Case Study · Child, ALD

Emergency homecare for a child with Adrenoleukodystrophy

Child A has adrenoleukodystrophy (ALD), a rare, progressive condition that affects the brain. After two previous providers could not maintain consistent staffing, NL Group stepped in with emergency care in June 2023 — now 172 hours a week at home.

Case Introduction

A rare, progressive neurological condition

Child A lives at home with their family and has a diagnosis of adrenoleukodystrophy (ALD) — a rare, progressive condition that affects the myelin sheath of nerve cells in the brain. The result is significant neurological decline, including loss of mobility, communication and swallowing function.

After two previous care providers were unable to maintain consistent staffing, NL Group was approached to deliver immediate support in June 2023.

“Caring for a child with ALD takes consistency, compassion and clinical skill — and that’s exactly what we bring to every shift.”

– NL Group Paediatric Care Worker

The Challenge

What Child A’s care required

Child A’s needs were complex and continuous:

Complex respiratory care, including airway management, PEG care and occasional nasopharyngeal suction
Regular episodes of dystonia and seizures requiring carer oversight and rescue medication when needed
Doubly incontinent and fully dependent on carers for bathroom assistance, mobility and postural management

Continuity of support, after previous packages failed through staffing shortages
Attentive, emotionally supportive care, as communication and social interaction are limited by neurological decline

What We Did

How the package grew

June 2023

Emergency Intervention

Emergency care from June 2023 — 30 hours a week to cover the most urgent needs.

Reassessed

Care Needs Reviewed

NL Group worked with the commissioning authority to reassess and review Child A’s ongoing care needs.

August 2023

Full 172-Hour Coverage

A full care plan built on clinical input, delivered by a skilled paediatric team trained in PEG, seizure, respiratory and neurological care.

Since

Safe and Settled at Home

Close collaboration with family and health teams ensures consistent, compassionate care.

The Outcome

“NL Group has brought reassurance and routine into our home — they really understand our child’s needs.”

Parent of Child A

What Partners Say

In our commissioners’ own words

“NL Group Generally Manage Their Care Packages Very Well. They Took Over a Client That Had a Lot of Issues, and There Has Been No Issue with Them.”

Anita Broadwell, CHC Senior Clinician, East Riding of Yorkshire CCG

“For the More Complex Service Users, NL Group Is the Main Provider We Use in This Area.”

Diane Murray, Home Ventilation Service Lead, Hull University Teaching Hospitals NHS Trust

“We Often Use NL Group When Our Packages Are in Crisis; NL Group Will Stabilise the Packages and Return Them to Order.”

Head of NHS Funded Care, North Lincolnshire

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