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Darren challenges drug company over Orkambi

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 a letter to Vertex Pharmaceuticals – this letter asks the company to urgently resolve the negotiations with NHS England so those with cystic fibrosis can have access to this revolutionary drug.

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  – that was clearly demonstrated by an online petition signed by  113,000 people. Cystic Fibrosis is a cruel and life-shortening condition – it is unacceptable this drug has been licensed for 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.

NHS England and Vertex need to sit down 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 joins Marmalade Trust ‘Ending Loneliness’ event

MP for Bristol North West, Darren Jones joined Marmalade Trust’s closing party on College Green on Friday 22nd June. The party drew to a close the wide-array of organised events forming part of a week to End Loneliness in the UK.

Darren said:

“I was delighted to join Marmalade Trust’s #LetsTalkLoneliness event on College Green. Loneliness is such an important issue to so many people – we need to talk about it and support each other. It is astounding that loneliness can have similar impact on your health as smoking and obesity, some studies have also shown it leads to an increased likelihood of dementia.  I’ll be following up on how I can support Marmalade Trust’s great work in Parliament in the coming weeks”.

You can find out more about Marmalade Trust here.

 

 

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Darren gets response from government on rectal mesh review

Currently, the forthcoming healthcare review covering vaginal mesh does not cover rectal mesh, which has similarly affected women. That includes many who were treated at Southmead Hospital. Darren recently wrote to the government to make it clear that he thinks that this is wrong. You can read the full letter Darren sent here.

Here is the reply Darren received from Lord O’Shaughnessy:

 

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Darren speaks about Obesity and Brexit on ITV

Darren appeared on this topical debate show with Sarah Wollaston, the Conservative MP for Totnes and Lib Dem Peer Baroness Judith Jolly, who’s from North Cornwall.

The topics of debate were obesity and Brexit. This was because Dr Sarah Wollaston and Darren both sit on committees which had recently done work on addressing obesity, and moreover nearly 20,000 year six pupils in the West Country are obese – illustrating a growing epidemic. Brexit is always in the news, but this week it was particularly important as it was time to consider the Lords’ amendments to the EU Withdrawal Bill.

Darren discussed his work on the Science and Technology Committee, and what the government could do to tackle obesity. He then discussed his own position on Brexit, and what he would like to see in a Brexit deal if Brexit does happen.

You can watch the full episode here.

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Darren asks experts about 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 board of academics, dietitians and a representative from a teachers union about this issue. He focused on the advertising of energy drinks, and how this might affect their consumption.

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Darren writes to government about PIP for young cancer patients

For the first three months of their diagnosis, young cancer patients aren’t allowed PIP benefits. This is despite the fact that PIP is meant to help people with the costs of serious illness or disability. Darren wrote to the Government minister responsible to ask her to review this.

You can read the full letter here:

 

Dear Minister,

 

RE: Please review PIP for young cancer patients so they get financial support backdated from the day of diagnosis

I am writing to you on behalf of my constituents, to ask you to take action to review Personal Independence Payments (PIP) for young cancer patients so that they get the financial support they are entitled to backdated from the day of their diagnosis.

Every year in the UK over 4,000 children and young people under 25 are diagnosed with cancer. Cancer costs from day one. The first three months of treatment for young cancer patients are a difficult and expensive time,  as treatment starts immediately and is often a long way from home. CLIC Sargent’s #Cancercosts research found that young people are spending an average of £360 a month during active cancer treatment.

However, young cancer patients currently have to wait three months before they can apply to the Government for PIP, the benefit designed to help with the cost of an illness or disability. It’s not right that young cancer parents can’t access the financial support they are entitled to, at the time when they most desperately need it.

I would be grateful if your Department could review PIP for young cancer patients so that they get financial support backdated from the day of diagnosis.

I look forward to hearing your response.

 

Yours sincerely,

Darren Jones MP

And below is the reply Darren received from the Government:

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Darren visits Henleaze Singing for the Brain Group

On Thursday 31st May, Darren – a registered Dementia Friend –  visited the Henleaze group of Singing for the Brain.

Singing for the Brain is a group activity which has been carefully designed by the Alzheimer’s Society for people with memory loss and their carers, in order to receive the many health benefits that are woven into the fun of singing. It is an enjoyable, friendly and uplifting activity giving many people a much-needed boost in confidence, all led by a trained facilitator.

The group meet for light refreshments and a chat beforehand to help people relax and get to know each other. Once the session starts, the group sit in a circle and do some exercises to warm up the voice. Then the fun really begins by singing a range of songs, either unaccompanied or sometimes using musical instruments.

If you wish to join the group, please note they meet on the 1st, 3rd and 5th Thursday of each month

You can find out more about the Singing for the Brain’s fantastic work here and more general information from The Alzheimer’s Society here.

Darren said after the visit:

“I signed up to become an Alzheimer’s Society Dementia Friend shortly after becoming an MP – I did this as I feel it is crucial there is wider understanding of dementia and how to support those with it.  I was therefore delighted to meet the local Singing for the Brain group and find out about the great work this group are doing with those suffering from dementia as well as their families. This community and person-to-person support is paramount and I know many of my constituents rely on it. I wish this group continued success and hope their numbers continue to grow as more people with dementia choose to access this invaluable support”.

If you think you or a family member may have Dementia talk to your GP who will refer you to the Dementia Wellbeing Service. They will allocated a navigator to take you through the system and provide support for you. You can also call the National Dementia Helpline on 0300 222 11 22.

 

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Darren visits University’s Integrative Epidemiology Unit

On Friday 25th May, Darren visited the MRC Integrative Epidemiology Unit (IEU) at the University of Bristol.

The MRC invests around £800 million per year in world-class research across the biomedical spectrum, from fundamental lab-based science to clinical trials, and in all major disease areas.

The MRC is a non-departmental public body funded through the UK Government’s science and research budget, and its research has resulted in life-changing discoveries for over a hundred years.

MRC IEU scientists conduct some of the most advanced population health science research. This helps improve our understanding of the biological mechanisms and environmental factors that can underlie and trigger common diseases. Including cardiovascular disease, osteoporosis, mental ill-health and conditions linked to obesity, addiction and ageing. Findings will be used to develop and test new interventions to prevent future disease.

The MRC’s will invest around £10.7m over the course of five years from 2018.

You can find out more about their work here: http://www.bristol.ac.uk/integrative-epidemiology/

Darren said after the visit:

“I would like to thank the team at the MRC IEU for hosting my visit – as a member of the Science and Tech Committee this was a fascinating and informative tour. It was great to see the investment in, and their research, being led here in Bristol. I look forward to hearing more about their research findings in the months and years to come”.

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Darren signs letter to Jeremy Hunt backing NSPCC campaign supporting Childline

Darren has signed a letter to Jeremy Hunt from the NSPCC, calling for more funding for Childline. Childline has a significant role to play in children’s mental health care, with 22,546 children struggling with suicidal thoughts and feelings calling the line in 2016-17.

Darren wrote this about the letter:

I was delighted to sign this open letter to Jeremy Hunt backing the @NSPCC’s Are You There campaign with 130 other MPs and Peers.

Childline is providing a crucial round-the-clock service to children struggling with their mental health, with one in three counselling sessions now relating to mental and emotional health

Together, we’re calling on Government to increase funding to Childline to ensure that no child’s mental health is left on the line.

You can read the full content of the letter here: https://www.telegraph.co.uk/news/2018/05/23/childline-must-receive-funding-cope-demand-suicidal-children/

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Darren writes to government on rectal mesh

Currently, the forthcoming healthcare review covering vaginal mesh does not cover rectal mesh, which has similarly affected women. That includes many who were treated at Southmead Hospital. Darren wrote to the government to make it clear that he thinks that this is wrong. You can read the full letter here:

 

Dear Jackie Doyle-Price MP

 

Inclusion of rectal mesh in review into patient safety

I am writing in order to ask that rectal mesh is included in Baroness Cumberlege’s review into patient safety. This is because rectal mesh has compromised patient safety.

Rectal mesh was inserted into women’s bodies by surgeon Anthony Dixon, at Southmead Hospital in my constituency of Bristol North West. These women were hoping to receive treatment for serious medical issues including rectal prolapse. But the meshes have left some of these women with unmanageable pain, or incontinence.

The review was announced by Jeremy Hunt on the 21st of February 2018. It has the stated purpose of reviewing what happened when three different treatments compromised patient safety, and making recommendations on what should happen next. Rectal mesh, despite its effect on patient safety, was not included in the review.

It is unclear why vaginal mesh is included in the review, but rectal mesh is not. Both rectal mesh and vaginal mesh have resulted in women suffering serious side effects.

I hope that you will consider increasing the scope of the review to include rectal mesh.

Kind regards,

 

Darren Jones MP