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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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Local pubs go to Parliament

MP for Bristol North West, Darren Jones has nominated two local pubs for the ‘Parliamentary Pub of the Year’ competition.

The competition is in its first year and will give 650 MPs the opportunity to nominate a pub to be recognised as the Parliamentary Pub of the Year. The main criteria for nomination is a pub that’s great at what they do – that can be for the range of beer or food, dedication to serving the local community, live music or local sports teams.

After asking constituents for their suggestions, Darren nominated the Eastfield Inn in Henleaze and the Lamplighters in Shirehampton.

Darren said:

“I couldn’t narrow down my choice to just one pub – so I have nominated two! Both of these pubs serve as vital community spaces for Bristol North West residents – they are also praised for their fantastic food and family-friendly facilities.

I am a keen supporter of  Campaign for Real Ale (CAMRA) and their Good Pub Guide – which both of these pubs now feature in. The pub sector provides £13 billion in tax revenues and 900,000 jobs. In addition, 30 million adults visit the pub every month.

Pubs are at the heart of the UK’s communities but far too many are closing leaving those areas without a public place where people can socialise. MPs should do what they can to support local pubs – that’s why I regularly host ‘pub politics’ sessions across the constituency and wanted to submit nominations for this great new award. I have my fingers crossed that one of our pubs will succeed and be crowned ‘Parliamentary Pub of the Year – they certainly deserve to be”.

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Darren raises concern at news of 16,000 extra cars on Bristol roads

MP for Bristol North West, Darren Jones has continued to call for large-scale improvements to transport infrastructure in North Bristol following the release of information from Department of Transport that indicates Bristol can expect 16,000 additional car journeys every day following the removal of Severn Bridge Tolls.

Ahead of the Gridlock Conference Darren chaired in July, Darren had previously launched a petition calling on the region’s metro mayor, Tim Bowles, to commit at least £50m to a new transport fund for north Bristol and voiced his concerns about congestion with members of the Local Enterprise Partnership (LEP). At the July conference, attendees discussed the gridlock hot stops across the North Bristol corridor and how they may be impacted by further developments such as the proposed expansion of Cribbs Causeway, new housing developments at Filton Airfield, the potential arena at Filton alongside the lifting of Severn Bridge Tolls. Attendees debated how a Transport Fund for North Bristol could be spent to support solutions to the congestion faced by drivers, encourage more sustainable travel and boost the area’s limited rail, bus and cycle networks.

Darren said:

“Since the announcement to reduce, and then remove, Severn Bridge Tolls, I have raised the issue of gridlock and air pollution with government time and again. I have also tried to engage with our Regional Mayor to tackle local transport.

Now we know – 16,000 extra cars are expected on our roads every single day – that’s 6 million a year – and with no thought for advance mitigation. It is no good for those responsible to say they are ‘looking into how to invest in our roads’. It also no good to just keep focusing on roads and cars!

I once again call on the Region’s Mayor, Tim Bowles, to invest in a North Bristol Transport Fund and protect the area from total gridlock by investing in road, rail, bus, pedestrian and cycling improvements.

I encourage those concerned about further traffic chaos to sign my petition calling for at least a £50m North Bristol Transport Fund: http://darren-jones.co.uk/transport-fund/.”

Local residents can sign up to support Darren’s call for a £50m North Bristol Transport Fund for road, rail, bus, cycling and walking improvements by signing his petition here.

Follow Darren’s work on transport 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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News on Westbury Post Office Closure

MP for Bristol North West, Darren Jones has written to the Post Office seeking an update following the closure of the Westbury branch and the appearance of unofficial posters declaring a campaign ‘to save the Post Office’ on Monday 14th August.

Darren said:

“I’m aware that Westbury Post Office is closed again today (13th August) and unofficial posters have appeared asking users to email a Post Office employee ‘to save the Post Office’ from permanent closure. Obviously this has caused significant concern, I have sought an update from the Post Office and share that update below. I hope this reassures residents and Post Office users of the intention to re-open the branch asap. I will be keeping a close eye on this to ensure it happens”.

The Post Office said:

“We can be very clear with customers and constituents that we are committed to seeing Post Office services retained in Westbury. We have absolutely no plans to close the branch.

I am sorry to hear that posters are understandably causing concerns for our customers. I will share that development with my colleagues and ask them to arrange for a formal notice to be displayed at the branch which apologises for the interruption to service and reminds customers of where alternative Post Office service can be accessed.

My colleagues in the field and contracts team are doing all they can to get the branch reopened as soon as possible”.

 

 

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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”.

 

 

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Darren backs unpaid carers

MP for Bristol North West, Darren Jones has backed local unpaid carers by advocating that ‘carers need care too’.

The Carers Support Centre Bristol and South Gloucestershire asked a sample of unpaid carers to share their experiences of arranging short breaks and what improvements could be made to the service.

  • 58% of carers have been caring for someone for over 10 years
  • 63% of carers felt improvements needed to be made to the short breaks service.
  • The top reason for needing a break was exhaustion with the second being changes in physical and/or mental health of the carer.
  • The top barrier to taking a break was expense (20% have to employ a carer and 39% have to rely on friends and family) with the second being an appropriate care service wasn’t available.

Darren said:

“The government must fund local authority’s properly so they can increase the funds available to support our carers – there must be consistent access to sitting services, day care and residential care that enables carers to take the breaks they need to maintain their own lives and health and wellbeing.

I’ll be hosting a carers-focussed surgery in January, with support from the Carers Support Centre, to help raise awareness of the challenges carers face and help where I can”.

More information on support for carers is available from: https://www.carerssupportcentre.org.uk/

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Darren shares news of grants available

MP for Bristol North West, Darren Jones is encouraging good causes in Bristol North West to apply for a share of a funding pot worth over £3 million that has been raised by players of People’s Postcode Lottery to support projects helping local people.

Awards of between £500 and £20,000 are available to both charities and community groups, with applications being open for the funding from 1 August until the 15 August.

This is the last chance organisations will have to apply for the funding in 2018, and so far, this year over 350 projects across Great Britain have been supported.  With previously funded initiatives ranging from community choirs for carers, to sports clubs, to wildlife conservation charities, this is a fantastic opportunity for groups to access funding to make a difference in the local community.

There are three trusts that groups can apply for funding through. Each trust focuses on a particular theme.

  1. Postcode Community Trust looks for applications on initiatives that will benefit communities through the delivery of grass roots health and wellbeing programmes;
  2. People’s Postcode Trust supports projects aimed at promoting human rights, employability and combatting poverty;
  3. while Postcode Local Trust focuses on proposals that aim to improve biodiversity and outdoor spaces.

Darren said:

“There are so many brilliant community projects right across Bristol North West that could benefit from this fantastic chance to secure funding, get an initiative off the ground or expand the reach of a service.  Across the three trusts there is scope for such a wide variety of organisations to benefit, and I’d strongly encourage them to visit the website, find out where their project could fit and get an application in.”

For more information and to apply for funding, please visit the trusts’ websites:

www.postcodetrust.org.uk

www.postcodelocaltrust.org.uk

www.postcodecommunitytrust.org.uk

 

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Darren sends annual report and invitation to join Powered by You

MP for Bristol North West, Darren Jones has sent an annual report and invitation to join Powered by You to each household in the constituency. The annual report letter updates constituents in each ward as to Darren’s local and parliamentary activity over the past 12 months and invites them to take part in an annual survey and share their feedback on the proposed arena location in North Bristol. Constituents can also complete the survey here.

Darren said:

“It is really important that all of my constituents, especially those who may not contact me directly, have at least a yearly update on my work and get the chance to let me know their views on my work as well as key local issues such as the arena and congestion. This report is especially timely, as I am launching an innovative and exciting project called Powered by You – which will feature an online app and offline community meetings. I want to hear from every street in Bristol North West and hear from those constituents who for whatever reason don’t come along to my policy events,  meet me at surgeries or public events. I want to ensure that every voice is heard.”

Local residents can find out more and sign up to join Powered by You here.

Eagle-eyed constituents will also notice Darren has launched a charitable Trust, known as a the Henacre Trust with support from the Quartet Community Foundation. The Henacre Trust will award grants to young people across Bristol North West, to find out more and donate to the Henacre Trust click here.

 

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Darren meets Bristol Croquet Club

Bristol North West MP, Darren Jones recently joined members of the Bristol Croquet Club (based in Sea Mills/Stoke Bishop) to chat about the health benefits of exercise, meeting new people and taking up a new activity.

Darren said after the visit:

” I would like to thank the group for inviting me along – I have never played croquet before but it was great fun…perhaps that is because I was on the winning team! The Bristol Croquet Club represent Bristolians from all walks of life and, as I found out, it’s a great way to keep fit, meet new friends, use our green spaces and enjoy a spot of (gentle) competitive sport. I shall look forward to the next game!”