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Hilary and his fellow Leeds Labour MPs have written to the Chief Executive of Leeds Teaching Hospitals NHS Trust to ask them to reconsider their proposal to form a subsidiary company which would transfer thousands of NHS staff out of the organisation.

See the letter below.

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Leeds Teaching Hospitals NHS Trust

Hilary and his fellow Leeds Labour MPs have written to the Chief Executive of Leeds Teaching Hospitals NHS Trust to ask them to reconsider their proposal to form a subsidiary...

A relative in the US recently emailed to tell me that ‘for reasons of security, privacy and ethics, I’ve dumped my Facebook account’. The revelations about Facebook and Cambridge Analytica have probably got us all thinking about who knows what about our lives. The internet is a wonderful thing, Facebook is a great means of keeping in touch and loyalty cards give us points or special deals, but as we are learning they also reveal a great deal of information about us and the lives we lead. We can share with the cyber-world our purchases, the telephone numbers of all our friends, our photos and our views on life and politics. All of this is harvested in order to target advertising at us. It's how companies like Facebook, Google and Amazon make their money.

The most important questions here are about transparency and consent. Should it be possible for us not to give consent for our information to be shared and yet remain a Facebook user, for example? And what should be done with the information we have consented to give, often without realising it? It's one thing to see adverts appear for sofas because we were recently browsing for one; it's quite another to think that our views - expressed privately to friends and family - will be used to send us politically tailored adverts, I think regulation is going to have to catch up with all this and soon.
 
I recently received an email from a constituent who said that he was unable to find an NHS dentist in South Leeds. It seems that of all the NHS dentists in our area, most of them have lists that are full and only about one in five are currently taking on new patients or referrals. 42% of children in England have not seen an NHS dentist in over a year and tooth decay is the single most common reason why children aged five to nine require admission to hospital. Yet the role of dental public health has been diminished in recent years.  That’s why we need to invest in children’s dental health so we can do something about the link between child ill-health and poverty.
 
Passers-by must have wondered why a crowd of us were standing around outside the newsagents in Town Street opposite the Belle Isle Working Men's Club on a recent Friday lunchtime. We were there to honour a son of Middleton who was a pioneer in astronomy. The occasion was the unveiling of the latest Leeds Civic Trust blue plaque to William Gascoigne, the astronomer and instrument maker who contributed hugely to our ability to see what lies beyond the confines of the earth and who lived in a house in Town Street, which long ago disappeared. I told the story of how Gascoigne met the Lancashire astronomer William Crabtree, who was much taken with Gascoigne's inventions. When he got home, Crabtree told his friend Jeremiah Horrocks about them. He then wrote to Gascoigne on 28 December 1640 saying,“My friend Mr. Horrox professeth that little touch which I gave him hath ravished his mind quite from itself and left him in an Exstasie between Admiration and Amazement. I beseech you Sir, slack not your Intentions for the Perfection of your begun Wonders.” Well if that isn't an encouragement to inventors the world over to keep going, then I don't know what is. And how did I find that wonderful quote? By searching on Wikipedia as I sat in my car in the club carpark. But that's the other side of the story – one of the internet's usefulness, as opposed to its intrusion.
 

First published in the April 2018 edition of South Leeds Life, available online here http://www.southleedslife.com/read-our-april-newspaper-online/

Hilary's Article for South Leeds Life - April 2018

A relative in the US recently emailed to tell me that ‘for reasons of security, privacy and ethics, I’ve dumped my Facebook account’. The revelations about Facebook and Cambridge Analytica...

I have been contacted by a number of constituents about Orkambi and the terrible plight of cystic fibrosis sufferers.

I was present for part of the debate on this issue in Westminster on 19th March where there was was a huge turnout of MPs from all over the country. This showed just how great is the concern we all feel to do everything we can to help those living with this disease.

There were many excellent and very moving speeches made by those present and you can read them all here.
https://hansard.parliament.uk/commons/2018-03-19/debates/41D2017B-E026-49FC-B94E-BCDB566AF1D6/OrkambiAndCysticFibrosis

The minister who responded to the debate said that six years ago NHS England agreed to fund Ivacaftor and Kalydeco for cystic fibrosis patients with the relevant genetic mutation. He added that an additional possibility that may help treatment in the near future is the double combination therapy branded Symdeko, which has shown positive results and is currently undergoing European Medicines Agency licensing.

He then went on to say this:

"More broadly, the number of medicines for cystic fibrosis patients expected within the next three years is promising, with products being developed by a range of manufacturers as well as Vertex. NICE is aware of 31 other technologies by 19 different companies—not Vertex—that are in the pipeline for cystic fibrosis. Clearly, the prices for any new treatment will also be considered by NICE and we must ensure that the arrangements NHS England enters into now do not restrict options for patients to have the best available medicine in the future.....

The NHS is in discussions with Vertex about Orkambi. Vertex has approached NHS England with a proposed deal to reduce its prices. While I cannot share the details of this proposal due to their commercially confidential nature—believe you me, I wish I could—I can assure hon. Members that, at the level that Vertex has proposed, the products are still far from cost-effective. Therefore, there is more talking to do.

Last week NHS England made a counter-proposal, which would ensure that the drugs could be used at a price that is cost-effective. I understand that NHS England has agreed to meet with Vertex—I would jolly well hope so, and of course it is not over email—to discuss that counter-proposal further. I have seen the statements made this weekend—I must say I am no fan of Twitter diplomacy in this or any other form of diplomacy. The statements this weekend were not exactly encouraging, but they must not be the end of the story."


So it seems to me that cost remains the problem, and we need to see movement from both NICE and Vertex to enable Orkambi to be made available on the NHS as it is in a number of other European countries. Those suffering from the disease now cannot wait.

We need to keep up the pressure and I will do so.

Hilary Benn
MP for Leeds Central

Orkambi

I have been contacted by a number of constituents about Orkambi and the terrible plight of cystic fibrosis sufferers. I was present for part of the debate on this issue...

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