Working together to improve the lives of people with type 1 diabetes – charities JDRF and INPUT announce merger

JDRF and INPUT logos

JDRF and INPUT are pleased to announce that the two charities are joining forces.

With the help of our amazing supporters, the two charities have achieved much separately and this merger will unite two strong voices for people with type 1 diabetes in the UK in a shared mission to accelerate the progress of research to cure, treat and prevent type 1 diabetes, and improve access to new treatments and technologies.

Working together, JDRF and INPUT will:

  • Fund research to cure, treat and prevent type 1 diabetes
  • Work to accelerate the pace of research and the delivery of treatments and technologies in the UK
  • Give support and a voice to children and adults living with type 1, and their families

JDRF in the UK is part of a global network of charities which together make the world’s leading charitable funder of type 1 diabetes research.  Founded in 1970 by parents of children with the condition, JDRF leads the fight against type 1 diabetes, funding research to cure treat and prevent it and working across the world to accelerate the pace of research, to deliver new treatments on the path to the cure, and to provide support, information and a voice to children and adults living with type 1 diabetes.

INPUT JDRF charity merger - INPUT CEO Lesley Jordan and JDRF CEO Karen Addington

INPUT CEO Lesley Jordan and JDRF CEO Karen Addington

For 20 years, INPUT has supported people living with diabetes, advocating for easier access to diabetes technology across the UK, such as insulin pump therapy, flash and continuous glucose monitoring and structured education.

The INPUT and JDRF teams will start to work together from the JDRF London offices from July, with the formal merger planned for October. For the foreseeable future all of INPUT’s communication channels will remain the same and any future changes will be communicated with plenty of notice.

We hope that everyone who has worked with JDRF and INPUT will welcome our news and work with us to improve even more lives, until we find the cure.  If you have any questions, please contact info@jdrf.org.uk

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Market research: T1D online survey – £15 Amazon voucher

Market research opportunity: T1D survey – £15 incentive for 20 minute online survey

When our posts help to recruit participants for market research we earn a finder’s fee. These fees help with our running costs. By taking part or sharing our posts, you are helping to raise vital income for INPUT. Thank you!

 

Creative Medical Research (CMR) is looking for caregivers/parents of children under 18 with type 1 diabetes to fill out an online survey (on their own or preferably with their child present). There will also be qualifying questions to determine your eligibility. You will receive an Amazon voucher gift certificate for £15 for taking part and INPUT will receive a finder’s fee for all participants who take part via this link.

Creative Medical Research reserves the right to withhold incentive on the basis of irresponsible or fraudulent data given. Please be aware that at the end of this survey they will be collecting your email address, this will only be used for the purposes of distributing the incentive and not stored following the incentive being sent.

For more information please contact enquiries@creativemedicalresearch.com.

Click here to start the survey

Note that a limited number of people will be able to complete the survey at the same time, so if you can’t access the survey leave it an hour or so and try again.

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Fusion 2018 blog post by Alasdair (speaker)

Alasdair, who spoke in the #WeAreNotWaiting session, wrote about INPUT Fusion on his blog.

He writes: “I attended the INPUT FUSION day on the 2nd of June in the London Irish Centre in Camden. It has become a yearly event but this is the first that I had attended. Its logo above says it all – it was a really good way of getting 100 delegates and others to come and talk and share amongst themselves and representatives of different diabetes companies showing their wares. I had been asked to come and provide a viewpoint of OpenAPS and #WeAreNotWaiting whilst @understudypancreas aka Annie Astle provided the counter view – more of that later…”

To read the full post and view the slides he showed on the day, please visit his blog here.

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Fusion 2018 guest post by Carole

I’m so pleased that I went to the INPUT Fusion meeting, as I learned much more about available technology, how it works and where it’s going. As a ‘lady of a certain age’ I confess I find technology can be very confusing and it was great to listen to the excellent speakers, all of whom used fairly simple language to make their talks accessible to the likes of me. I was fascinated listening to Professor John Pickup’s talk about the history of diabetes technology – we have so much to thank him, and other researchers like him, for. My brother developed diabetes in 1964, aged 10, and I remember well how rudimentary things were. We’ve come a long way, though there is a way to go. I also enjoyed chatting to other attendees, and in doing so I found out about the things you can use to turn the Freestyle Libre that I use into a CGM, eliminating the need to scan. I bought it immediately!

Amongst the people I met were two ladies who have been diagnosed with LADA (latent autoimmune diabetes) like me. It was so good to talk to them, and I hope to meet up with them again.

The importance of engaging with social media has become clear to me, if you want to be involved in the wider diabetes community and make certain you know what’s going on. It can be difficult for us oldies, but my first experience with INPUT has given me much more confidence to do so.

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Urgent field safety notice: recall of specific lots of Accu-Chek® Aviva / Performa test strips

May 2018

Roche Diabetes Care has alerted us that they are recalling specific lots of Accu-Chek Aviva test strips and Performa test strips.

This information has been shared directly with users for whom Roche have contact details and has also been communicated through their wholesalers to healthcare professionals and pharmacies.

Action

  • check the lot number of all Accu-Chek Aviva or Performa test strips you have (this is on the top flap of the box and the label on each pot of strips
  • if they match the following, do not use them but take them back to the pharmacy that dispensed them for a replacement

ACCU-CHEK AVIVA STRIPS (50s)
• 497392
• 497391
• 496915
• 496809
• 496802
• 496807

ACCU-CHEK AVIVA STRIPS (10s)
• 497344
• 497392

ACCU-CHEK PERFORMA STRIPS (10s)
• 476597
• 476646

Accu-Chek Performa Nano mmol Kit. [Please note that the field safety notice only applies to the pack of Performa 10 test strips contained within the kit]
• 10153116
• 10153114
• 10153115
• 10153112
• 10153111

Click here to see the field safety notice letter: AC Aviva&Performa Field Safety Notice – PG

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Market research: Accu-Chek Insight insulin pump users, all ages, across UK. £60 incentive

Market research opportunity:
Accu-Chek Insight insulin pump users (all ages) across the UK

When our posts help to recruit participants for market research we earn a finder’s fee. These fees help with our running costs. By taking part or sharing our posts, you are helping to raise vital income for INPUT. Thank you!

 

Healthcare Opinions are organising a nationwide diabetes study looking to speak to people of all ages who are using an Accu-Chek Insight insulin pump to manage their diabetes. We have sessions available for the following pump users:

Adults (18+) who are using an Accu-Chek Insight insulin pump.
Adolescents (12-17) who are using an Accu-Chek Insight insulin pump.
Caregivers of children under the age of 12 who are using an Accu-Chek Insight insulin pump.

Participants will be asked to give their feedback on the design of a mobile app that will be used in conjunction with an insulin pump. During the session you will be asked to carry out a series of tasks, using the app loaded on a smartphone. The purpose of the study is to ensure the app is as simple to use as possible. The session is completely safe and non-invasive.

The Interview will last 1-hour and will be held in various central locations across the UK week commencing Monday 4th June, and as a thank you for taking part in the study you will receive £60.
All children, 17 years of age or younger, must be accompanied by an adult and they will receive an additional £15 as a thank you for attending too.

If this is something you are interested in and available for please head to the Healthcare Opinions website to answer a few short questions and register your interest. Or you can call their office on 0161 242 5215.

Please remember to mention INPUT when you are called to take part!

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Update: Animas supplies of Dexcom G4

Following the news in January that Animas will close operations in the UK, Animas have advised that they are no longer supplying Dexcom G4 sensors.

They wrote to all the customers they knew about but some may not have heard.

Their letter explains how to get your Dexcom G4 supplies from now onward, whether you are self-funding or are funded by the NHS.

The letter, dated February 2018 can be viewed here

It said:

—–

Dexcom G4® PLATINUM CGM System – Update

We understand the trust and confidence you place in our products and company, and we recognize that you rely on our products to provide critical care and maintain your day-to-day health. Regrettably, we are writing to inform you that our agreement with Dexcom in relation to the supply of CGM products has come to an end. As a result, Animas will no longer be able to provide Dexcom G4® CGM from 1st April 2018. Effective immediately, Animas will begin transferring Dexcom product enquiries and requests to Dexcom.

What does this mean for you?

Private Purchases

If you are currently purchasing the Dexcom CGM yourself, we would recommend you contact Dexcom where you will be able to set up a direct account for continued supply. Dexcom can be contacted on:

Telephone: UK: 0800 031 5761
Email: UK: gb.sales@dexcom.com
Website: www.dexcom.com/en-GB

Funded by your Hospital/NHS Trust

If your Dexcom supplies are currently paid for by your Hospital/NHS Trust, we have contacted them to advise of the transition of supply direct from Dexcom. If your hospital orders CGM on your behalf, we would suggest you contact your Diabetes Team for clarification on how you proceed with future orders. If you currently order direct from Animas, we would recommend you contact Dexcom for further information. Dexcom can be contacted on the above details.

Troubleshooting
If you experience any issues with your Dexcom CGM products, now or in the future, whether obtained from Animas or Dexcom, please contact Dexcom on the above details.

—–

Dexcom told us: (we) can confirm that Animas doesn’t supply G4 sensors any longer since the 1st of April and Dexcom has taken over the distribution of G4 to Animas pump users. Dexcom will definitely continue to supply G4 sensors to all of them. However we know that not all Animas/Dexcom users are aware of this transition despite our communication efforts so any help will be appreciated.

As we said in the January news item:

Animas Vibe users will be able to continue to use their Animas Vibe and Animas consumables until the warranty expires, UNLESS your diabetes care team believe it would be detrimental to your health.

It does not mean all Animas Vibe users will be switched to Medtronic pumps against their wishes.

By February 2022 there will be no Animas Vibe pumps in warranty and no further consumables will be available.

Click here to see a copy of the letter Animas UK sent to their customers in January about their close down.

For answers to any questions about Animas pump supplies please reach out to the Animas Customer Support team on 0800 028 8039

To compare Animas Vibe form and functions with other pumps have a look at our comparison table here.

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Libre supplies restricted – again

The following message is from Abbott:

“Accelerating demand for the FreeStyle Libre system, paired with earlier than expected approvals and reimbursement in numerous countries, has led to shipping delays for web shop customers. We are working hard to address these issues and hope for the situation to be resolved by the summer.

We apologise for letting our customers down and we know these delays are unacceptable for the diabetes community. They’re unacceptable to us as well.

We are focused on providing access and we’re putting the following measures in place to resolve the current situation:
Until July, we are restricting access to our web shops to existing customers. Existing customers will be limited to ordering 2 sensors per shipment every 25 days.
We are offering all existing customers free shipping on orders until this delay is resolved.
We’re working on increasing our capacity and have also begun the process of building an additional manufacturing facility, which will further increase our output of sensors.

Those accessing the FreeStyle Libre system via NHS reimbursement should not be concerned about potential compromises to supply.”

What this means:

  • Global demand for Libre means sensors are in short supply
  • Prescriptions of Libre will not be affected
  • Existing web customers will be limited to a maximum order of 2 sensors every 25 days
  • The web shop will not accept any new customers until July 2018
  • Postage of web shop sensors will take longer than normal
  • You might get sensors quicker by buying from a pharmacy (check bit.ly/Libre222)

We are very disappointed with this restriction, and urge Abbott to sort out their manufacturing of sensors for the sake of people who rely on Libre.

While Abbott sort themselves out, you might consider trying Dexcom. G5 sensors are licensed for 7 days but many people make them last for 2-3 weeks or more, and the transmitters last for 3 months. You will need to register to see the offer.

Give Dexcom a try for just £160. This promotional offer includes a single sensor and a G5 transmitter at a 36% discount! Alternatively, they are offering 4 sensors and a G5 transmitter for £275, that’s a £130 discount! Please do give them a call to discuss the details. UK numbers 020 7139 1980 / 0330 088 7877 / 0800 031 5761

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Market research: London, current Animas insulin pump users/parents. £100 incentive

Market research opportunity:
current Animas insulin pump users or parents of Animas insulin pump users.

When our posts help to recruit participants for market research we earn a finder’s fee. These fees help with our running costs. By taking part or sharing our posts, you are helping to raise vital income for INPUT. Thank you!

 

Creative Medical Research are looking for up to 9 participants and are keen to get people schedule in before the Easter break.

Both groups will take place in Holborn, Central London in the evening on 10th April.

Group sessions last for 90 minutes and start at 6:30pm and 8:15pm. Participants will take part in one group only.

All participants must be using Animas insulin pumps or be parents of children using Animas insulin pumps.

£100 honorarium will be paid to each participant and £100 donation made to INPUT for each participant

To take part please contact George Ashford at Creative Medical Research:

email george.ashford@creativemedicalresearch.com

phone 01473 832211

www.creativemedicalresearch.com

 

 

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Message from Insulet to OmniPod users in the UK

The following message is from Insulet:

We are pleased to announce an important update for Omnipod® Insulin Management System users in Europe. As the developer and manufacturer of the Omnipod® System, the team here at Insulet will be taking over all customer support and product services from      1 July 2018.

Introducing Insulet’s Customer Care team

To help keep you updated, we’re pleased to announce we have now setup our Customer Care team to be contacted by phone*. They will be available Monday-Friday from 8am-5pm (UK) and free to answer any questions users may have regarding our plans in Europe. The Customer Care team will not be signing up customers for products or services until      1 July 2018.

You can find contact details for the team on our newly updated webpage www.omnipodeurope.com where users can find plenty of helpful information about our plans.

Omnipod® System users should visit the page where they can register to receive email updates about our plans in Europe.

Until 1 July 2018, current distribution will remain the same and users are advised to continue to contact their current distributor to receive their Omnipod® System support as usual.

We believe that listening and responding to the diabetes community is important for us to support our customers’ needs now and in the future.

*Calls may be monitored and recorded for quality monitoring purposes. Calls to 0800 numbers are free from local landlines, but other networks may charge for these calls. Our Customer Care team will not be signing up customers for products or services until 1st July 2018. 

 

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