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Darren continues to fight for Cystic Fibrosis patents

MP for Bristol North West, Darren Jones has continued to fight for access to Orkambi for the 10,400 people with Cystic Fibrosis in the UK.

Darren has co-signed another letter to Vertex Pharmaceuticals (the first was sent on 28th June 2018) – this letter asks the company to urgently sit down with, and resolve, the negotiations with NHS England so those with cystic fibrosis can have access to this revolutionary drug.

Darren said:

“Cystic Fibrosis is a cruel and life-shortening condition – it is unacceptable this drug has been licensed for over three years yet it is still not available for the people that sorely need it. Median life expectancy for someone with CF is just 47 – in the context of that stark figure three years is far too long and time is being wasted. People with Cystic Fibrosis should not have to keep waiting for this treatment to be available.

NHS England and Vertex need to sit down as a matter of the strongest urgency and sort this out and the government should be facilitating that discussion. These delays are causing unnecessary suffering to my constituents and thousands across the country”.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

You can find out more about Cystic Fibrosis and the support available here.

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Darren comments on Rough Sleeping Strategy

MP for Bristol North West, Darren Jones shared his views following the release of the government’s Rough Sleeping Strategy on 13 8 18.

Darren said:

” It’s all too little, too late and as anyone who visits our city centre knows it unfortunately won’t slow down the increasing numbers of people driven onto the streets by the government’s austerity politics and cuts to the support available to the most vulnerable. I anticipate Universal Credit, now rolling out across Bristol, will only make matters worse.

The government need to urgently assess the impact their cuts are having across the whole public, voluntary and charitable sphere and stop this political experiment – it isn’t working! This strategy fails to address the root causes of rough sleeping – the starting point for this, and the Social Housing Green Paper, should have been a significant increase in the number of social properties built alongside dramatically improved access to mental health care, employment support and training, security for private renters and substance misuse services“.

 

 

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Darren writes to Education Minister

MP for Bristol North West, Darren Jones  has written to Nick Gibb, the Education Minister calling for him to listen to feedback from thirteen local head teachers and review the further cuts of £5m to education budgets in the constituency.

Darren said:

“Thirteen Bristol North West head teachers recently shared their concerns with the Education Minister Nick Gibb. In his reply he ignored their concerns so I have followed up asking that he urgently reviews the honest and measured feedback and stops ‘shifting the goalposts’ by quoting data that doesn’t reflect the real budget cuts or challenges our schools are facing. Our children’s education can’t be bought on the cheap”.

 

 

Darren signs letter calling for Social Housing green paper to be published

1.16 million households are on Social Housing waiting lists, but the Government have delayed their publication of a Social Housing green paper. With private rentals increasingly expensive this is urgently needed.

Darren signed a letter calling on the Government to provide details of when this will be published. He was one of 35 strong, cross-party group of MPs, showing the strength of feeling about this issue.

 

 

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Darren asks experts whether social media and screens harm children

Darren was present at the Science and Technology committee’s third evidence session for its Social media and screens-use inquiry. Here, charities, learned societies and academics were asked about cyber-bullying, addiction and body image.

The first set of witnesses was Anna Clark, Cardinus Risk Management, Dr Vicky Goodyear, Lecturer in Pedagogy in Sport, Physical Activity and Health, University of Birmingham, Dr Heather Woods, Lecturer, School of Psychology, University of Glasgow, Dr Max Davie, Officer for Health Promotion and Mental Health Lead, Royal College of Paediatrics and Child Health, and Professor Peter Fonagy, National Clinical Adviser on children and young people’s mental health, NHS England.

Darren asked them how we could verify children’s age for online purposes, given that many children do not own what makes this possible for adults (e.g. credit cards).

The second of witnesses was Susie Hargreaves OBE, Chief Executive, Internet Watch Foundation David Austin, CEO, British Board of Film Classification Emily Cherry, Assistant Director of Policy & Public Affairs, Barnardo’s.

Darren asked them whether the evidence base existed to prove the harm of screens and social media.

Darren writes to Government calling for review into 16-17 year old children’s services

The Government are reviewing children’s services for 16-17 year olds. Children’s services provide extra support to vulnerable children.

However, they are only reviewing these services in relation to education outcomes. But we know outcomes are worse across employment and health outcomes as well. That’s why Darren wrote to the Government to ask they extend the review to consider these outcomes as well.

Darren signs letter calling for stronger powers for the Electoral Commission

Darren has signed a letter calling for stronger powers for the Electoral Commission.

Recently, the Electoral Commission investigated improper spending by the BeLeave campaign in the Brexit referendum, and found them to have done so. Darren signed a letter calling on changes to what the Electoral Commission does in order to prevent this happening again in the future

 

 

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Darren calls for Public Inquiry into Brexit Referendum

Following the findings of the Electoral Commission’s review of Vote Leave spending and the fine levied to Facebook by the ICO in relation to data harvesting in advance of the referendum, Darren wrote to all MPs calling for their support in demanding an independent judge-led inquiry into the referendum. Darren first called for a public inquiry during PMQ’s on Wednesday 11th July.

Darren said:

” I have written to colleagues in Parliament today(17th July), to seek their support in calling for a public inquiry into the Brexit Referendum. If illegality can take place in our democracy, we must bring forward reforms. Please write to your MP to ask for their support. You can check who your MP is here“. ‬

 

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Darren signs food insecurity letter

Food insecurity is a widespread problem in the UK, with the Trussell Trust alone seeing a million people at its food banks a year. However, there are no statistics on exactly how many people are struggling for food for how long. To tackle the problem we need to know how widespread it is, so Darren signed a letter to the Government asking them to begin measuring food insecurity.

 

 

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Darren asks experts about the dangers of Energy Drinks

The Science and Technology Committee are currently holding an inquiry into energy drinks. They are looking at the effect of these drinks on health, particularly of young people and children.

Darren asked a mixture of industry representatives and regulators about the advertisement of these drinks.

He firstly asked about the effect of caffeine, which is included in many energy drinks, on young people.

He then asked about how children are defined for the purposes of energy drink advertising, whether children are targeted for energy drink advertising and whether energy drinks should carry warnings.