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Darren supports Cystic Fibrosis Trust’s campaign for Orkambi

MP for Bristol North West, Darren Jones has shared his views on access to Orkambi for constituents with Cystic Fibrosis.

Darren said:

“ I sympathise profoundly with anyone affected by Cystic Fibrosis (CF) and I appreciate the strength of support for making Orkambi available on the NHS, this is demonstrated by an online petition signed by  113,000 people.

In July 2016, the National Institute for Health and Care Excellence (NICE) concluded in its final guidance that Orkambi “could not be considered a cost-effective use of NHS resources” and subsequently did not recommend the drug for use on the NHS. I share the disappointment that will have been felt by many at this decision.

I understand that access to the drug Orkambi can extend the lives of 50% of the 10,400 people in the UK who currently live with CF, with this drug already available in Austria, Denmark, France, Germany, Luxembourg, The Netherlands, Italy, the Republic of Ireland, Greece and the United States.

The Government has welcomed dialogue between the pharmaceutical company, Vertex, and NHS England to agree a deal that would make Orkambi available to NHS patients. I know that the Cystic Fibrosis Trust has been working hard in pushing Vertex to put forward a substantive proposal to NHS England.

Parliament will hold a debate on access to Orkambi for people with CF on 19 March 2018. I will follow the debate closely and keep in mind the points my constituents have raised. In the meantime, I believe it is the responsibility of Ministers to facilitate the end of the deadlock between Vertex and NHS England so that people can access this vital drug and see their lives transformed.

At the General Election I stood on a manifesto that pledged to tackle the growing problem of rationing of services and medicines across England. The manifesto also committed to ensuring that all NHS patients get fast access to the most effective new drugs and treatments, and to insist on value-for-money agreements with pharmaceutical companies”.

Read Darren’s account of his first day on the bill committee for the Data Protection Bill

Data Protection Bill: Committee Day One Report (Immigration Control, Fundamental Rights, Children and Democratic Engagement).


The Data Protection Bill (the “Bill”) applies new EU data protection laws (the General Data Protection Regulation, or “GDPR”) to processes in the UK which EU law has no jurisdiction over, introduces the Law Enforcement Directive for policing and law enforcement powers, and sets out the data protection and privacy rules for the processing of personal data by the secret services (MI5, MI6 and GCHQ). It also provides a legislative “parking space” so that, if the UK leaves the EU, GDPR is copied and pasted into UK law (via the EU Withdrawal Bill) to maintain the same level of laws between the UK and the EU post-Brexit. This is important, because the EU needs to agree that UK laws are adequate in order to allow the continued flow of data between the UK and EU after Brexit.

The Bill arrived in the House of Commons from the House of Lords and, having passed second reading, it is now at committee stage. This line-by-line review of the Bill kicked off today. Here’s my report of day one.

“Immigration Control”

The most contentious issue of the day was the Government’s power to excuse itself of having to comply with the General Data Protection Regulation (“GDPR”) for the purposes of effective “immigration control”.

The small problem for the Government is that such an exemption doesn’t exist in the GDPR, and – according to the Joint Committee on Human Rights – is a new power for the Home Office compared to the law today (found primarily in the Data Protection Act 1998).

The Home Office Minister – Victoria Atkin MP – did a grand job of trying to sell what is an unnecessary and poorly drafted clause. But there was no hiding from the fact that this exemption has no clear basis in law (or at least not a clear basis which the Minister could point to). In trying to deal with our concerns on the Opposition side, Ms Atkin reassured us that the exemption would only be used for a short period of time (i.e., a citizen’s data protection and privacy rights would only be “paused”). But in failing to answer my question, the Minister was unable to point to any clause in the Bill which restricted its use for a time limited period. If that is the case, it should be set out on the face of the Bill.

It was also made clear that this new exemption would apply to a wide range of citizens – non-EU citizens and EU citizens, but also British citizens connected to migrants. My wife, for example, is Australian and so I assume that I could lose my data protection and privacy rights should the Government wish to use my personal data to check on the effective immigration control of my wife! If that were to happen I would lose pretty much every single right made available to me by the GDPR.

The fact of the matter is that the clause isn’t needed (there are other clauses which allow for exemptions for the management of criminal offences), it’s too broad and – in my view – the Government has no legal basis to introduce it if it wishes to comply with EU law now, and into the future. We will no doubt return to this issue at Report stage.

Fundamental Rights

The other contentious issue of the day was that of fundamental rights: namely rights included within the European Charter of Fundamental Rights (“the Charter”), which the Government seeks to repeal by way of the EU Withdrawal Bill.

GDPR is built on the fundamental rights to privacy and the protection of personal data included in the Charter. And so the Opposition tabled amendments to include, specifically, Article 8 of the Charter on the face of the Bill. This would seek – in our view – to maintain the level of legal protections enjoyed by citizens today and would assist the Government in securing a decision of adequacy with the EU (which would allow us to continue to share data between the UK and the EU after Brexit day). Following debate in the House of Lords, our amendment was further refined to make it clear that the fundamental right was subject to any legal exemptions and derogations in the Bill and the GDPR, and that the Information Commissioner would have the power to enforce that fundamental right.

However, the Government disagreed with this assessment and even though the Department for Exiting the EU confirmed that no other directly comparable right exists in UK law today, it voted down our amendment anyway. What I fail to understand is – but for any example whatsoever of an issue with Article 8 of the Charter today – why the Government feels so strongly about excluding it for the future.

The Bill provides a legislative parking space in which to copy and paste GDPR (which is directly applicable to the UK for as long as we are members of the EU), so that after Brexit day we continue to apply it in the UK. But by seeking to build a replica GDPR without Charter fundamental rights, we are in essence seeking to build a replica house with no foundations. I hope this risk being taken by the Government doesn’t result in our attempts to seek an adequacy decision sinking as soon as we’ve done the building work.

Lastly, two final points.

Children and the Age of Consent

Firstly, a short debate took place about the age of consent for the purposes of legal processing of personal data. The EU took the view that children aged under 16 require parental consent, but allowed Member States to make that age as young as 13. In the UK today, the age applied is 12, but the Government has used its right to shift it up one year to 13. That means that children from 13 years of age can consent to handing over their personal data without parental consent.

Whilst I appreciate that some companies are investing time and money into building more children friendly privacy policies and consent mechanisms, I do worry about the fact that our children’s data can be processed (for example, for the purposes of targeted advertising online) without parental consent. 13 seems to me to be too young as a matter of public policy, and so I was pleased that the Digital Minister Margot James MP agreed with me that the Government ought to keep an open mind about regulation in this space in the future. Namely, that when the technology exists to verify the age of children (which exists today for adults but is less easy for children), that we consider voluntary and – if required – legislative means to check the age of users online and to apply suitable protections for them.

Democratic Engagement

Secondly, an amendment was included today which made it clear that data controllers can process personal data without consent if it is for the purposes of “democratic engagement”. This is a clarification in the Bill that the UK Government considers “democratic engagement” to be an example of “public interest” and the exercise of “official duties” by office holders. This would mean that politicians are able to use information on the electoral register, for example, without first seeking the consent of their constituents. Without this right, it would be very hard for parties and politicians to send voters information at election time, for example.

However, I raised a concern with the Minister that people or organisations other than political parties or elected politicians could rely on “democratic engagement” as a “public interest” matter in processing citizens’ data without their consent. I, for example, would not want Leave.EU to start using my personal data without my consent merely because they think they are supporting democratic engagement.

The Minister failed to give me a suitable answer to this, and I will return to it at Report Stage.


These, in my view, were the main contentious issues of the day. The Government passed many sensible amendments to tidy up the Bill, and introduced useful amendments on issues such as the safe guarding of children and the processing of personal data to track ethnic diversity on company boards. We also started the debate on the regulation of algorithms, but we will return to this in more detail in later days.

So that’s Day One down. Four more to go. On Thursday, I will be the first to rise to beg that my amendment be moved, ensuring the UK Government recognises its obligations in adhering to EU law via the European Data Protection Board in the future. Until then!


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Darren meets First Bus and presses for changes to route 76

MP for Bristol North West, Darren Jones met the Managing Director of First bus, James Freeman, on 9th March 2018 and pressed for changes to the 76 bus route. The route no longer stops at Henbury School and has also affected residents travelling to Southmead Hospital and Henbury’s local vets.

Darren also shared his concerns about the impact of rising fares, the two-tiered fare system recently introduced and the poor service of route 2 through Henleaze.

Darren said:

“ James was aware of my concerns about the changes made to the 76 route. I wrote to him in advance of Friday’s meeting to push for at least some of the original route to be reinstated and drop-off and pick-ups at Henbury School. Along with local councillors, I also launched a petition which has been signed by over 545 local residents. I am delighted to hear First will be reassessing the changes they made.

I’m also aware from Henleaze constituents that route 2 is also a cause for concern with many services cancelled or erratic in arrival time. I made James aware of those issues and asked that he investigate.

I also shared my thoughts on the two-tiered payment policies First have recently introduced – these require customers to pay 50p extra for day passes if payment is not made via an app. Many people are not able to use app-based systems – these people are likely to be some of Bristol North West’s (and the cities) most vulnerable residents – the very people often least able to pay the extra charge.

I am clear that for people to be encouraged out of cars and onto public transport the service must be accessible, affordable and reliable”.


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Darren calls for increased schools funding and continued free school meals

MP for Bristol North West, Darren Jones has backed calls – ahead of today’s spring budget – for the government to rethink schools funding and changes to free school meals under Universal Credit.

New research by the school cuts coalition of unions (NEU, NAHT, ASCL, UNISON, GMB Union and Unite the union) shows that class sizes are rising in most schools in Bristol North West as a result of the Government’s cuts to education.

There is a particular problem in secondary schools because of a shortfall of £500m a year to funding for 11 – 16-year olds between 2015/16 and 2019/20, plus the deep cuts to sixth form funding (over 17% per pupil since 2010).

62% of secondary schools in England have increased the size of their classes in the last two years (2014/15 to 2016/17). In Bristol North West, secondary schools have an average of 1.2 more students in every class. The average income per pupil in Bristol North West’s secondary schools has also dropped from £5995 in 2015/16 to a forecast of £5247 in 2019/20.

Bristol North West’s primary schools are also not immune with average class sizes having risen by 0.6 pupils per class, this comes alongside 46% of primary schools seeing the pupil to teacher ratio decreasing, leaving pupils with less support.

Darren said:

“ These figures show that the Government is failing in its stated aim to even out the differences in education – 100% of secondary schools in Bristol North West have seen a decrease in the Teaching Assistant to pupil ratio, with 50% also seeing a drop-in pupil to Teacher ratio. 31% of secondary school students also currently access Free Schools Meals, which are at risk because of changes to Universal Credit – we can’t stand back and let these cuts happen – the impact they will have on our children and their families will last a lifetime. Children and young people only get one chance at school and college and we know that education cuts never heal.

As a country we should be investing in this, and future, generations of young people. I am continuing to call on the Government to urgently address the funding crisis, protect free school meals and not continue to ignore these very real problems. I will be writing to each Bristol North West school to ask how the lack of funding will continue to impact their staff and pupils – the government must understand once and for all that good quality education is a price worth paying”.

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Darren tours HMP Bristol and shares funding concerns

MP for Bristol North West, Darren Jones met the Governor of HMP Bristol, Steve Cross and toured the prison formerly known as HMP Horfield. HMP Bristol is in the constituency of Bristol West but prisoners from across the area are sent here to serve their sentences and many staff live in Bristol North West.

Darren said:

“ I found the visit extremely useful and would like to thank Steve, his team and some of the prisoners for meeting me. Prison services are under an incredible amount of pressure and HMP Bristol have faced, and continues to face, many high profile challenges. The facility itself is ageing and suffering from a lack of investment. Staffing numbers have been low whilst remaining staff have faced record levels of violence and the rising use of former legal highs such as Spice as well as more traditional drugs. I was therefore really pleased to hear that staff numbers have risen, investment is being made to the oldest parts of the prison, there’s a focus on education and skills training and use of drugs is declining. Given my role on the Science and Tech Committee, I was particularly keen to hear about the use of experimental technology to block the use of drones (which drop drugs) over the prison.

Whilst there has been improvements in other areas,  I was concerned to hear about the lack of support available to prisoners with acute mental health needs.  As beds in secure mental health units are in such demand prisoners often find it very difficult to access the right level of care and therefore remain in prison for lengthy periods. This is especially worrying given the 5 self-inflicted deaths at HMP Bristol during 2016 – the highest number on records since 1978.

The situation in this, and other, prisons  needs more focus from government. HMP Bristol staff are doing what they can within the resources they have –  government funding is sorely needed to improve the whole facility, provide swift access to adequate mental health support and ensure those employed as Prison Officers are paid fairly for the increasingly challenging job that they do. The government must listen to HMP staff and governors as well, as the prisoners and their families, and act on their concerns”.









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Darren shares his views on UK aid budget

MP for Bristol North West, Darren Jones has shared his thoughts on maintaining 0.7% of UK gross national income(GNI) for the overseas aid budget.

Darren said:

“ During the 2010-15 Parliament, the UK became the first G7 country to enshrine in law a target to spend 0.7% of GNI on overseas aid and did so with cross-party support. The development and improvements in hundreds of millions of people’s lives that have resulted from this commitment have been a credit to humanity. For example, from 2010-15, British aid supported 11 million children through school and helped more than 60 million people to access clean water, better sanitation and improved hygiene conditions. UK support during the Ebola outbreak in West Africa in 2014, meanwhile, halted the spread of the disease. Such achievements should be a source of pride for everyone in the UK. I therefore remain profoundly committed to spending 0.7% of GNI on overseas aid. 

I share people’s concerns at recent questioning of the UK’s foreign aid budget. It is worrying that, while the Government has committed to maintaining the 0.7% target, its plans also suggest a shift away from the current cross-party consensus on international development. For example, the Government has stated its intention to attempt to change international definitions of development assistance. It has further stated that if it fails to do this, it will change the law to allow it to use its own definition of development assistance. I am concerned that this is an attempt to use overseas aid intended for poverty reduction for things such as security and counter-terrorism, and to plug funding gaps in other departments. 

It is vital that we continue to abide by the Organisation for Economic Cooperation and Development definition of aid and use our overseas assistance to promote the economic development and welfare of developing countries. Abandoning this global standard would undermine the purpose of the 0.7% commitment and send the wrong message to the rest of the world. I will continue to defend the UK’s aid target and press for the correct use of the international aid budget”.


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Darren shares his views on Family Reunification for refugees

MP for Bristol North West, Darren Jones has shared his thoughts on family reunification for refugees ahead of a debate on 16th March 2018.

Darren said:

“ A number of constituents have shared concerns about family reunion rules, the effectiveness of their implementation-  a number of organisations have also called for there to be an expansion of the criteria.  

I agree that more needs to be done to reunite families and I share concerns about the efficiency of the processes in place for those who are entitled to join family in the UK, particularly children. As we know, unaccompanied migrant children are highly vulnerable to trafficking, sexual exploitation and other forms of abuse.  

At the last General Election, I stood on a manifesto that promised to produce a cross-departmental strategy to meet our international obligations on the refugee crisis, and I hope this is something that the Government will consider. I believe we need effective action to alleviate the refugee crisis and continue to uphold the proud British tradition of honouring the spirit of international law and our moral obligations by taking our fair share of refugees.  

Unfortunately, I am unable to attend the debate on the 16th March 2018 due to prior diary commitments. However I did attend the opposition motion on refugees on the 24th January  2018. I also recently attended a fund-raising Ceilidh organised by Westbury Welcome to help refugee families arriving in Bristol North West. 

I will follow the Government’s response to the refugee crisis closely, and will continue to bear in mind the points my constituents raise when this issue is debated in the House of Commons in the future”.


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Darren holds debate on waiters and waitresses’ tips

Darren has recently been campaigning on the issue of what happens to tips left at restaurants, following Bristol activists and the Bristol Post raising the issue in relation to Aqua Italia. There, as well as at Turtle Bay, workers were made to pay a percentage of their table orders to restaurants, in case they received tips. This sometimes meant workers were forced to got to a cash-point to pay their employer, as they hadn’t made enough in tips.

You can watch Darren’s full speech in the debate below:


7th March Science and Tech committee highlights

The subject for this session was the flu vaccination programme. The witnesses were Professor Paul Cosford, Director for Health Protection and Medical Director, Public Health England, Professor Steve Powis, National Medical Director, NHS England, Professor Jonathan Van-Tam, Deputy Chief Medical Officer, Professor Andrew Pollard, Chair, Joint Committee on Vaccination and Immunisation, and Dr Sue Crossland, President Elect, Society for Acute Medicine.

Watch highlights here: