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Katy Brown's letter to John Bercow in full

Below is the full letter sent by Katy Brown to the Speaker of the House, John Bercow.

Dear Mr Bercow,

My son Sam is six. He has Morquio Syndrome, which causes shortness in stature, progressive physical disability and early death.

There is no cure.

Sam is a little boy full of fun and life who has no idea about the silent path this disease has set for his future.

For three years he has given his young life to medical research, taking part in a clinical trial for the first ever treatment for Morquio called Vimizim.

You see Morquio Syndrome is one of those conditions with an irritatingly long name.

It’s a good job our MP Greg Mulholland didn’t use its other name – Mucopolysaccharidosis Type IVa.

He might have been stopped much sooner. It is one of the conditions that Mr Mulholland was passionately referring to in a question to the House that you so rudely and abruptly stopped.

When you stopped Mr Mulholland, it demonstrated in an instant everything that is wrong with British politics.

You wielded your power, the House guffawed and jeered, you used derogatory, mocking language.

But here’s the blunt truth behind that stopped question. For eight months Mr Mulholland has fought valiantly to represent my family and my son.

He has stood up against deep injustice and worked tirelessly to get answers and a solution, all whilst health ministers have done nothing.

He was standing up for what is right, unlike many others. Two weeks ago Sam lost access to Vimizim, the drug that has given him back his childhood.

Why? Because of gross incompetence and deep institutional failings at NHS England.

And because of the repeated failures of health ministers to hold it to account.

On Thursday, July 2, NHS England neatly played a get-out-of-jail-free card. They decided after 14 months of deliberating and three changes in decision date to not make a decision on funding the drug at all… and passed the buck to the National Institute for Health and Care Excellence .

Nice, who have no expertise in ultra rare diseases and who are frantically trying to figure out how to deal with these complex conditions that they don’t understand.

This means that even in the event of a positive decision, Sam is likely to remain untreated for a further 6-9 months, with likely irreversible consequences.

And a positive decision is sadly an uphill struggle as Nice has drawn seriously flawed conclusions and not involved the right expert clinicians thus far.

I’ve heard far too many excuses, seen far too many meaningless letters, and been fed far too many broken promises. Not least from David Cameron himself.

It is abhorrent and entirely unacceptable. When you stopped that question on Tuesday, you not only took away Mr Mulholland’s voice, you took away my son Sam’s too.

A little boy with life and the system stacked against him.

You also took away a little piece of me, because despite what I’ve experienced in the past eight months, I’ve always grasped on to the hope that a little humanity remains at the heart of our political system.

I hope you accept now that this indeed was an urgent question, and one that David Cameron and Jeremy Hunt personally should be held to account to properly answer.

Yours, Katy Brown

– Katy Brown
  1. National

Kendall backs Harriet Harman's policy on welfare cuts

Labour leadership hopeful Liz Kendall has defended the party's interim leader, Harriet Harman after others attacked her for endorsing key Tory benefit cuts.

Liz Kendall and Harriet Harman Credit: REUTERS/Darren Staples / Stefan Rousseau/PA Wire

Liz Kendall said it was essential that the party showed that it had changed if was to regain the trust of voters.

She said "People said to us 'We don't trust you on the money, we don't trust you on welfare reform.'

If we are going to oppose things we have to put something else in its place, because if we carry on making the same arguments we have done over the last five years we will get the same result.

"We have to put forward a different credible alternative and Harriet was absolutely right to say that."

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  1. National

Labour leadership hopefuls hit back at Harman

Labour's leadership candidates have hit back at comments from acting leader Harriet Harman suggesting the party should not contest the Tory government's latest round of welfare cuts.

Labour's leadership candidates: Jeremy Corbyn, Liz Kendall, Andy Burnham and Yvette Cooper Credit: PA

Speaking over the weekend, Ms Harman said Labour had to win back the trust of voters when it came to the economy - and they could not to that through "blanket opposition" to the Conservatives' budget.

Jeremy Corbyn - the most left-wing of the contenders - had already declared he will not support Ms Harman's decision, while a spokesman for Andy Burnham today said he too opposed cuts to child tax credits.

[Child tax credits] are paid to people who are doing the right thing and working hard to make ends meet.

Andy will not offer blanket opposition and, where we agree with a government policy, we won't oppose for the sake of it. But these tax credit changes are regressive, they are wrong, they hit families in work and Andy opposes them.

– Andy Burnham spokesman

A spokeswoman for Yvette Cooper said she would argue for a "real alternative" to the Tories' plans.

Yvette has made clear from the start that she does not believe the best way to reduce the deficit is to hit working families, reduce work incentives and push more children in to poverty.

She has said that the Tory plans for cutting tax credits and abandoning the child poverty target do both and Labour should strongly oppose them.

– Yvette Cooper spokeswoman

Liz Kendall, the fourth candidate, is yet to comment.

Grimsby MP calls for more support for coastal flood protection

The MP for Great Grimsby is calling for more support for coastal communities to protect them from flooding, Melanie Onn has today spoken in parliament , saying that a funding shortfall could put homes and people at risk.

She says more financial relief, improved warning systems and better drainage is needed. But DEFRA, which oversees government funding for flooding projects, says it is spending more than £2 billion over the next six years.

Duncan Wood spoke to Ms Onn and began by asking what her biggest concerns for coastal communities are:

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