What happens when you don’t provide us with the medicine we need

20th April 2017

Following a decision on Tuesday NOT to approve the use of sodium oxybate for an adult with severe narcolepsy & cataplexy due to both benefit & cost issues, we drove to Devon to attend a Treatment Decision Review Panel at Exeter Town Hall.

I would like you all of you with narcolepsy out there, including your friends and family to share this picture because it shows the impact of the decision taken for the individual.

This was one of FOUR full body cataplexy attacks suffered by the individual we represented. The first two were in the car park. Of these, the second was next to a glass recycling container and I was extremely concerned for the individual’s well-being as I helped them into a safe position.

The third was in a double door entrance to the building where the hearing took place. The final fall was on the stone stairwell following the hearing.

I have refractory narcolepsy & cataplexy so I was able to anticipate the falls and wait for the individual to recover but what happened yesterday was inexcusable and would not be acceptable if livestock were involved, never mind an adult, parent and one of our community.

Thank you for letting me share this photo. Thank you Peter Todd for driving us there and attending the hearing.

The Panel will respond to us formally within five days and as I have previously stated, Narcolepsy UK will continue to support anyone in this position until it is rectified by the NHS.