S (a child) v NHS England

An individual funding request policy must be given real effect, even where NHS commissioners must allocate finite resources consistently and may generally restrict exceptionality decisions to clinical factors. Exceptional clinical circumstances do not require a patient to be unique. A patient may qualify where the usual treatment is ineffective, the condition is particularly severe or rare, and the patient is likely to obtain significantly greater clinical benefit from the requested treatment than comparable patients. Non-clinical consequences, such as academic disadvantage, cannot themselves establish exceptionality, although the policy must be applied to all relevant clinical evidence. Where the decision-maker applies the exceptionality test too restrictively or fails to consider material clinical evidence, the court may quash the decision. In an exceptional case, it may order interim funding rather than remit the matter for reconsideration.

The claimant, a child suffering from narcolepsy and cataplexy, sought NHS funding for sodium oxybate after the usual treatment failed and her condition deteriorated. NHS England refused to refer her individual funding request to its panel, treating her as representative of a wider group and finding insufficient evidence of clinical exceptionality.

Judicial review was brought on grounds including discrimination, breach of section 11 of the Children Act 2004, and failure properly to apply NHS England’s individual funding request policy. The court heard the policy ground first and determined whether NHS England had lawfully applied its exceptionality test.

1. Claim allowed. NHS England had failed properly to apply its individual funding request policy. Its decision was based on an excessively restrictive understanding of clinical exceptionality and failed to engage adequately with material evidence from the claimant’s consultant.
2. The appropriate comparator group was patients whose symptoms were not adequately controlled by the usual treatment, rather than all patients suffering from narcolepsy and cataplexy. The claimant’s lack of response to treatment, deterioration, particularly severe symptoms and unusual clinical circumstances were relevant to that comparison.
3. Under the policy, exceptional circumstances did not require uniqueness. The claimant had to demonstrate that she was significantly clinically different from the relevant group and was likely to obtain significantly greater clinical benefit from the requested intervention. The evidence satisfied those requirements. The policy’s reference to progression was inapplicable because narcolepsy was not progressive.
4. The court accepted that NHS England had finite resources and could lawfully adopt a policy considering individual funding requests by reference to clinical factors. Consistently with R(Condliff) v North Staffordshire PCT [2012] PTSR 460, non-clinical matters such as academic achievement could not themselves determine exceptionality. The resource constraints recognised in R v North Devon HA, ex p Coughlen [2001] QB 213 did not remove the obligation to apply the individual funding request policy lawfully.
5. The court did not substitute its own view for that of the funding panel. Ordinarily the decision would be quashed and reconsidered. However, this was an exceptional case in which refusal of treatment could not be supported on the evidence. NHS England was therefore ordered to fund a three-month trial of sodium oxybate under Dr Elphick’s supervision.