The reluctant advocate journey continues.
By 2014 it was not unusual for aHUSUK to get emails from news journalists from newspapers , radio and TV. It was a big surprise however to get an e mail from a TV production company asking to consider featuring aHUS in a documentary about the NHS.
We met with a producer to find out more before we could say whether we should contribute.
The Producer told us the documentary was being made for one of the UK’s main TV channels, Channel 4 , and expected to be broadcast in Autumn 2014. The documentary’s theme was about the choices facing the NHS in using its £100 billion per year budget (£2billion per week) It would be a three part mini series. aHUS would feature in one of the programmes as representing rare diseases alongside two other more common uses of using NHS resources. ( These turned out to be those suffering from drug and/or alcohol abuse, and those who needed better quality prosthetic limbs ). The angle for aHUS would be the need for the most expensive drug in the world.
The Producers said it would be done in a novel way in that there would live social media interaction for viewers to give their opinions on what they were seeing and what their preferences were for spending by NHS there may even be a viewers vote like a reality show. Although a bit apprehensive about the interactive facet, the trustees thought that it would raise awareness of rare diseases generally as well as making more people think about aHUS. ( it might even result in someone getting an aHUS diagnosis in the future when they may have not)
We also knew that we had a panel of media savvy aHUS patients/ families with good stories to tell.
To get a better idea of the challenge we were facing, see the 40 second trailer to the series click here
So with all approvals in place filming begun and by July several patients had been interviewed , one had even had her kidney transplant filmed. Even NICE would allow the documentary makers into its July meeting which I would be attending (although no sound recording of the proceedings was permitted.to be recorded.)
Although I tried not to be included (” I have a face for radio and a voice for newspapers” I told the Chair of the NICE Committee when he ribbed me about being filmed) increasingly the programme makers did begin to focus on our family. It was also clear the filming would continue until the NICE decision was made and its broadcast had been delayed until the New Year.
For that decision to be positive, the 23rd July meeting was now critical.