THE Joining Jack charity has heavily criticised House of Commons speaker John Bercow after an astonishing rant at MP Greg Mulholland while he spoke about funding for drugs.
The Liberal Democrat MP has led the national Fund Our Drugs Now campaign for funding and a proper decision making process for drugs for rare diseases such as Duchenne muscular dystrophy (DMD), which Wigan seven-year-old Jack Johnson was diagnosed with.
Jack is the inspiration behind the Joining Jack charity, set up by his parents Andy and Alex Johnson to fund research into finding a cure.
Mr Mulholland, the MP for Leeds North West, was speaking about the delay in a decision for funding into drugs, including Translarna for DMD.
However, as he discussed the dates that the families were told there would be a decision on – but were kept waiting – he was interrupted by Mr Bercow who accused him, in no uncertain terms, of taking too long.
The speaker said: “The honourable gentleman will resume his seat. It is discourteous to the house to be long-winded especially when exhorted not to be.”
When Mr Mulholland then tried to make a point as to why it was so important to be heard, the speaker responded: “Order! Don’t argue the toss with the chair Mr Mulholland, don’t shake your head mate, I’m telling you what the position is, you were too long.”
This resulted in bursts of laughter from the benches before Mr Mulholland opted to leave with the speaker adding: “Mr Mulholland, learn it man! You were too long and you need to learn and that’s the end of it.”
The exchange was greeted with disgust in many quarters, not least from Jack’s mum Alex who said she was “devastated”.
Despite Translarna not being a treatment that can help her son’s variation of DMD, she is desperate for it to be released to those it can.
She said: “I think sometimes Duchenne has toughed me up but after watching this clip I can honestly say I am devastated and absolutely fuming.
“How dare John Bercow an elected member of parliament speak to Greg Mulholland MP with such disrespect and trivialise an absolutely dire situation for what? Speaking too long!
“He behaves disgracefully. It’s a like watching playground bullies.
“Does he understand the medical emergency that is Duchenne and the other life threatening illnesses that are affected by ministers and NHS England’s failures to make promised decisions to fund vital drugs for terminal illnesses?
How dare John Bercow an elected member of parliament speak to Greg Mulholland MP with such disrespect and trivialise an absolutely dire situation for what? Speaking too long!Alex Johnson
“Translarna will not help Jack but how dare our government behave in this way.”
Mr Mulholland has also spoken of his disgust at the situation.
Pointing out in his blog that the speaker’s rant lasted longer than his question, he wrote: “This sadly means that Health Ministers have not been held to account at the Health Questions immediately following the announcement last Thursday. That is a failure of parliamentary democracy.
“Well let me make it clear, I will put my role in holding to Ministers to account and my campaign to end discrimination against those with ultra-rare conditions before worrying about “discourtesy” to members if the subject matter necessitates saying a little more than some more simple issues.
“So let me now ask the question I was prevented from doing so. Alas now I will have to ask it in different ways - but I will ask it and try to get an answer. My question was to be:
“On June 22 in a written PQ, the Life Sciences Minister said: ‘The decision on the interim funding of Vimizim...will be made by NHS England by the end of June 2015’. Families living with Morquio Disease and Duchenne Muscular Dystrophy were then told the decision would be June 30, then July 1; then on July 2 NHS England announced they weren’t going to make a decision. How long is the Minister going to ignore this fiasco?
“I would ask any reasonably person to view my question and decide if this question, cut off so abruptly, was really ‘too long’?”