The mother of Sam Brown, who suffers from the rare disease Morquio Syndrome, has written to the Speaker of the House of Commons.Read the full story ›
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
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Two projects in our region are up for a top award in London today.
Bridlington's revised bathing waters directive, which looks to make beaches in the town excellent, and the Lincolnshire Lakes project, which is a proposal for 3 and a half thousand homes near Scunthorpe - have been nominated for planning excellence at the Royal Town Planning Institute Awards.
Investors in a potash mine, including thousands of local people from the Whitby area look set to benefit on paper this morning after shares of Sirius Minerals rocketed up in price - with a rise of more than 80%.
It follows a controversial vote yesterday evening in which the North York Moors National Park approved the plans.
The company is listed on the alternative stock market.
A controversial plan to sink a huge potash mine in the North York Moors National Park has been approved by park authority members tonight.
It is said the project will create more than a thousand jobs - and many more when it's under construction. But there have been fears it could damage the environment. Chris Kiddey reports from Sneaton Castle near Whitby.
Sadly, North York Moors National Park authority members voted narrowly by 8-7 this evening, after nine hours of... http://t.co/kWyLV8Ladj
The Campaign for National Parks has expressed its 'disappointment' at the approval of a potash mine by the North Yorks Moors National Park Authority and says it is now considering mounting a legal challenge.
The charity, which acts as the independent national voice for the 13 National Parks in England and Wales, says the project is 'completely incompatible' with National Park purposes.
CNP now has six weeks to apply for a judicial review and says it now needs to decide whether there are grounds for such a challenge.
We’re really disappointed that NPA members have approved the construction of the world’s largest potash mine in the North York Moors. We have long maintainedthat this project is completely incompatible with National Park purposes and that the promised economic benefits could never justify the huge damage that it would do to the area’s landscape and wildlife and to the local tourism economy. There was clear evidence of the planning grounds for refusing this project in the report produced by NPA officers but there has also been huge pressure for NPA members to approve a project which has been widely promoted as bringing employment to the area, even though many of the jobs will not go to local people.
The North Yorks Moors planning commitee has approved plans for a potash mine in the national park, near Whitby, by eight votes to seven. It could set a benchmark for national parks nationwide.
Controversial plans to sink a mile deep mine shaft and create a 1,000 jobs in the heart of the North York Moors National Park near Whitby are expected to be decided today. Mining firm Sirius Minerals wants to dig billions of tonnes of potash - a type of fertiliser - from beneath the moors and seabed. But dozens of environmental groups say the mine will harm one of the region's finest landscapes and damage the vital tourism industry.