The parents of a Cookstown girl who died in May have launched a campaign calling for age-based restrictions on mobility support and continence care to be removed from NHS provision.
Family says clinical need was ignored
The campaign was started in memory of Lila Dripps‑Weir, who was born with a rare inherited metabolic disorder known as Pyruvate dehydrogenase deficiency (PDH) and died at the age of two. Her parents say that during her life they repeatedly sought services that clinicians agreed Lila required, but were refused because the services were only available to children aged three and above.
Lila’s mother, Hayley Dripps, described the situation as a matter of basic rights and clinical judgement. She said multi‑disciplinary teams and the specialists involved in Lila’s care concluded she required a wheelchair‑accessible vehicle because she needed specialist seating to protect her head and trunk and to be transported safely.
“It is about basic human rights. These services should be offered to those who need them based on the opinions of paediatric doctors and those who qualified, not someone making a decision based on age.”
Continence support also affected
The family faced a separate obstacle in obtaining continence products. According to her mother, Lila’s medical condition meant she faced continence issues and, as she grew, required the largest available nappies once she reached 20kg. At the time, Lila was not eligible for assessment for these products because of the same age threshold.
The parents have launched a petition in Lila’s memory urging policy change so that access is determined by clinical need rather than chronological age.
- Service contested: wheelchair‑accessible vehicles — currently only provided to children aged three and over, according to the family’s account.
- Service contested: NHS continence products — access limited by age despite weight and clinical need.
- Family position: assessments should be made by paediatric clinicians and other qualified professionals based on need, not age cut‑offs.
Local consequences and wider questions
The family's campaign raises questions about how local clinical commissioning and social care decisions are made in Northern Ireland, and whether rigid age limits are appropriate for children with complex and rare conditions. The case highlights the potential mismatch between policy thresholds and individual clinical requirements, particularly for children with conditions that affect growth, mobility and posture.
Campaigns such as this often seek to influence regional policy by drawing attention to practical consequences for families attempting to secure essential equipment and support. Those calling for change argue that multi‑disciplinary clinical assessments are best placed to determine need and appropriate provision.
| Service | Family's reported barrier |
|---|---|
| Wheelchair‑accessible vehicle | Denied because Lila was under age 3 despite clinical recommendation |
| Continence products (largest nappies) | Not assessed until child reached threshold weight/age; family said need arose at 20kg |
Local health trusts and the Department of Health set eligibility criteria for equipment and product provision. Campaigners argue those criteria must be flexible enough to reflect differing clinical circumstances, particularly for rare or complex conditions.
Hayley Dripps paid tribute to her daughter, describing Lila as an “incredibly happy, strong and courageous little girl” and reiterating that had age limits not prevented access to specialist transport and products, Lila’s quality of life and safety in travel would have been improved.
The petition launched in Lila’s memory seeks to prompt review of the age‑based rules and to ensure professional clinical judgement is central to decisions about equipment and continence provision for children across Northern Ireland.
