Success in Devon!

node leader
27 April 2017

Last Tuesday, 18th April 2017 Matt O’Neill and Peter Todd completed an overnight “dash” to Devon where they joined a patient on Wednesday morning to present at a “Treatment Decision Review (TDR) Panel” in an attempt to reverse a decision by an “Individual Funding Request” (IFR) Panel to refuse funding for treatment with sodium oxybate for an adult with severe narcolepsy.

Following our presentations, the TDR Panel referred the additional evidence presented back to the IFR Panel who met again today, Wednesday, 26th April, 2017 and we are delighted that they approved a 3 month trial of sodium oxybate providing confirmation, that other usual treatments in addition to those recorded on the Individual Funding Request application (e.g Methylphenidate/Clomipramine), have been trialled or considered by patient and consultant to be clinically inappropriate.

In this scenario, the IFR Panel considered that the patient may benefit from a 3 month trial to prove whether or not exceptional benefit has been gained. The objective criteria for this are to be agreed by clinicians prior to treatment starting. The Panel also noted that, as previously acknowledged, this patient was considered to be exceptional in herself,  given the severity of her symptoms and impact on her day to day activities.

The panel also took into account the comments of the TDR Panel and a discussion with the referring clinician has been arranged to agree objective criteria and degree of benefit that would be considered to be exceptional.

The panel will require an update towards the end of the 3 month trial period to consider whether the criteria have been met.

What does this mean practically?

  • That an adult previously declined access to sodium oxybate will now have a 3 month trial. 
  • We have proved the effectiveness of Narcolepsy UK supporting legal aid applications for cases such as this and we will continue to do so across the UK until commissioning sodium oxybate for adults is removed from the IFR process entirely and the NHS and/or Clinical Commissioning Groups take responsibility for creating a definitive commissioning policy for this medicine.
  • We can potentially reverse some of these perverse decisions at local level.
  • More importantly, do not accept what you are told and contact us on and we will do our very best to seek access for you.