How Rachel Burley-Stower challenged the CCG’s decision to cut a child’s care funding and made them reinstate his care package in full.
Jordan was born with short bowel syndrome and has to receive all nutrients and fluid through a central vein, known as Total Parenteral Nutrition (TPN). His TPN is administered under sterile conditions for 11 hours each night, during which time he requires constant supervision. His treating clinicians emphasised that waking night cover is vital to keep Jordan safe from immediate harm and avoid longer term life threatening consequences.
Jordan was correctly assessed as having healthcare needs and until he was 6 years old, the Clinical Commissioning Group (CCG) funded 45 hours per week of night-time care. This was less than seven hours a night but Jordan’s family accepted the care package.
The annual CCG reassessment of Jordan’s needs found that he still met the criteria for NHS Children’s Continuing Care, but reduced his care package to 30 hours per week. As a result, his family could only pay carers for four nights each week, although Jordan’s needs had not reduced.
Rachel asked the CCG to provide their rationale for cutting Jordan’s care package. The CCG stated that their decision was based on a funding allocation assessment tool. They added that Jordan’s parents should cover some of his night-time care needs. The CCG ignored the fact that Jordan’s parents were already covering all of his daytime care needs, and some of his night-time needs, in addition to working and looking after Jordan’s siblings.
Rachel prepared a public law challenge to the CCG, advising them that she would issue Judicial Review proceedings in the High Court unless they instated an adequate package of care. She highlighted the precedent case of R (KM) v Cambridgeshire CC  UKSC 23, which involved an inadequate social care package for a severely disabled child, also based on the use of a resource allocation tool.
The CCG initially resisted Rachel’s arguments, but backed down when Rachel sent a Letter Before Claim outlining her intention to obtain a declaration that the CCG’ decision was unlawful, an order quashing the decision, and a costs order against the CCG.
The CCG reinstated a care package proving Jordan with waking care 7 nights per week. Jordan’s parents continue to provide a large part of his care, but not the waking night care that impacted upon their health and wellbeing, employment and family life. While Jordan’s parents are still providing significantly more care to him than they would for an able-bodied child of the same age, the overall balance on their resources as parents is better now the waking night care has been reinstated.
If your child’s NHS Children’s Continuing Care funding has been reduced, our care funding solicitors can help you appeal that decision. Contact us on 01273 609911, or email firstname.lastname@example.org to find out more.
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