31. For obvious reasons, there has been emphasis placed on the claiamnt’s academic expectations and her need to do as well as possible in her current A level examinations. But every child will need to do their best since otherwise their future life will be severely blighted. This is however a non-clinical factor. Ms Richards relies on the decision of the Court of Appeal in R (Condliff) v North Staffordshire PCT [2012] PTSR 460. The case concerned the criteria set for determining exceptionality because of the difficult ethical and practical questions in deciding, as between patients competing for limited resources, what circumstances should be taken into account as potentially exceptional. Toulson LJ, who gave the only reserved judgment, referred to and cited extensively from a paper published in 2008 by Dr Daphne Austin, a consultant in public health with many years experience. The approach to be adopted must be to ask ‘on what grounds can the PCT justify funding this patient when others from the same patient group are not being funded?’ The ratio of the decision in the case was that it was lawful to adopt a policy that IFR’s should be considered and determined exclusively by reference to clinical factors.

32. I recognise, as Ms Richards has submitted based on the evidence of the Head of Clinical Effectiveness for Specialised Services for the defendant, that the defendant has finite resources and, as the courts have recognised (see for example R v North Devon HA ex p Coughlan [2001] QB 213), cannot fund every treatment for every patient. It has to make decisions, which may sometimes seem extremely harsh for individual patients, to ensure the best possible outcome for all patients. The defendant’s official policy makes the point that ‘there should not be a parallel system operating which allows individual treatments on patients to bypass prioritisation.’ The policy states:

33. While accepting that the approach of the defendant is not unlawful, it must be borne in mind that there is an IFR policy which must be given some effect. Equally, I am conscious that it is not for me to strike down the decision in this case because I believe that it was too harsh and I have, as anyone would, enormous sympathy for the claimant. Mr Wise has contended that the cohort to be considered should be all those suffering from narcolepsy and cataplexy. Ms Richards submits that that cannot be right since all for whom the usual treatment is not effective would be regarded as exceptional. This would be contrary to the policy of the defendant and would in any event widen to an excessive extent the test for exceptionality. I am inclined to agree with Ms Richards but in any event I think I should regard the appropriate cohort as those who do not respond to the usual treatment.

34. The key evidence in this case is that of Dr Elphick emphasised in her letter of 18 March 2016. The claimant is not only not responding to the usual treatment but is deteriorating. This shows that she is suffering from a particularly severe form of her condition. Her condition is rare, and her failure to respond to the usual treatment is also rare. But she is in a very rare situation in that she suffers from a particularly rare form of the condition. This aspect is not dealt with in the response of the defendant’s panel or screening group. Since exceptional cannot mean unique, it is in my view difficult if not impossible to see that the claimant should not be considered to meet the exceptionality test. If she is not exceptional, who is? I should add that in her case there is clear evidence that her mental and physical health is suffering and will get worse. Thus she will benefit from the treatment with sodium oxybate to a greater extent than others who are not receptive to the usual treatment. This means that, as Dr Elphick said, there is cost effectiveness in that she will not be likely to need medical care to the extent she will if not treated with sodium oxybate.

35. As I have said, I must not substitute my own judgment for that of the panel. But I have not done this since, as I have set out, there were in my view failures by the defendant to have regard to all the matters raised by Dr Elphick and an altogether too restrictive application of exceptionality. The claimant qualified within the IFR policy referred to in paragraph 13 above.

36. Normally in cases such as this, as the defendant’s solicitors stated, the remedy would be to quash the decision and to require reconsideration in accordance with the judgment given. But I am satisfied that this case is indeed exceptional to the extent that a decision to refuse the treatment could not be supportable. Accordingly, I took the unusual step of making an interim order that the defendant should fund the provision of sodium oxybate to the claimant for a three month trial period to be administered under the control of Dr Elphick.

37. I have no doubt that anyone reading the circumstances of this case would be surprised that sodium oxybate is not available for children generally and for the claimant in particular. But I recognise the constraints under which those responsible in the defendant have to act. I wish to make it clear that there is no suggestion that any of those involved in the decisions lacked compassion or knowingly refused treatment they should have permitted. The difficulties facing them cannot be underestimated and I am sure that they regret the need to make decisions which result in suffering by individual patients. Nonetheless, I am satisfied that this is a very rare case in which the decision making has gone wrong.