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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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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i-Port Advance injection port for MDI users

Medtronic are celebrating World Diabetes Day!

i-Port Advance™ is now available at a discounted price for a limited time only – offer ends 28 November 2017

How many times do you inject over 3 days?
Would you like to reduce that to one single skin puncture?

i-Port Advance is a small injection port that lets you take your insulin without having to puncture your skin for each injection. It’s easy to wear and easy to use, and both fast and long acting insulin can be injected into the same port. The port can be worn for up to three days during all normal activities, including sleeping, bathing and exercise.

 

 

Normally £72 online (ex VAT) for a box of 10 (1 month supply), from today until 28 November 2017 you can get a box of 10 for just £60 – the same price as at select Paydens pharmacies in the South East. Note this is currently not normally available on the NHS.

To find out more and take advantage of this offer click here

It won’t hurt to try…

What are the benefits?

iPort Advance™ has been proven to:

  • Reduce Pain
  • Reduce Anxiety
  • Improve quality of life

99% of patients report that i-Port Advance™ is beneficial
98% of patients think that i-Port Advance™ is comfortable to wear

What do patients say about i-Port Advance™?

“There were times before when diabetes restricted me. Parents would bring snacks and food to rehearsals and tennis matches, but I wouldn’t eat them because I didn’t want to take extra injections. Now, with i-Port Advance I can enjoy the food because I don’t mind taking the extra dose, and I feel just like any other teen in the room!”
Lindsey, age 16, has type 1 diabetes

To find out more and take advantage of this offer click here

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REPOSE study – its value and impact

You may have seen the social media storm that unfolded when the REPOSE study was published in March 2017. With this article we hope to give all relevant information and perhaps calm some fears.

Link to research article in BMJ

For many years some have been asking

  1. should insulin pumps be available to everyone on insulin including those who don’t meet the criteria set out in NICE TA151? and
  2. do pump users tend to get better outcomes than those on multiple daily injections (MDI)  because of the pump or because of the extra education given to them?

REPOSE was designed to answer those questions.

The 2-year study involved 248 participants at its conclusion.

Participants had to meet all the following inclusion criteria:

  • adults with type 1 diabetes for at least 12 months
  • willing to undertake intensive insulin treatment with self monitoring of blood glucose levels, carbohydrate counting and insulin adjustment
  • no preference for either pump or multiple daily injections
  • with clinical indications for structured education in insulin treatment to optimise diabetes control who had not participated previously in structured training

The following were excluded from taking part:

  • those who meet the NICE criteria for pump treatment
  • those needing a pump in the opinion of the investigator
  • those with a strong desire for pump treatment
  • those with serious diabetic complications
  • and those unable to communicate in English

Study intervention

Participants were randomised to the MDI or pump treatment group.

MDI group:

  • attended standard DAFNE structured education course over five consecutive days in groups of 5-8 adults as outpatients
  • they took Humalog or NovoRapid for meals and twice daily injections of Levemir
  • they used the Accu-Chek Aviva Expert Bolus Advisor System as a bolus calculator

Pump group:

  • attended a modified DAFNE course, previously validated in pump users, over five consecutive days. The course also incorporated the practical skills and learning outcomes needed to use pumps successfully delivered in an additional group session, one to three weeks before the main course.
  • used a Minimed Paradigm Veo insulin pump with Humalog or NovoRapid
  • the bolus wizard in the pumps was activated as part of the course

Outcomes

The study measured:

  1. change in HbA1c if it was 7.5% / 58mmols/mol or over at the start of the study;
  2. proportion of participants reaching NICE 2004 target HbA1c equal to or less than 7.5% / 58mmols/mol;
  3. episodes of moderate or severe hypoglycaemia;
  4. cholesterol levels; proteinuria; insulin dose; body weight.

Diabetic ketoacidosis was recorded through the assessment of serious adverse events throughout the trial.

It also looked at psychosocial outcomes including satisfaction with treatment, diabetes related quality of life, fear of hypoglycaemia and emotional wellbeing.

Primary outcomes

HbA1c: the pump group did slightly better but the difference between the groups was not clinically significant.

Proportion of participants reaching HbA1c ≤7.5% (58 mmol/mol): the pump group did slightly better (25.0% vs 23.3% of the MDI group).

Secondary outcomes

Severe hypoglycaemia: no difference in rates of severe hypoglycaemia between the treatment groups. Across both treatment groups, the number of severe hypoglycaemic episodes was reduced.

Moderate hypoglycaemia: by 24 months, the MDI group did slightly better but there was no statistically significant difference between the groups.

Other biomedical outcomes

No statistically significant difference between the treatment groups at any time point.

Diabetic ketoacidosis

The number or type of serious adverse events did not differ between the groups, with the exception of diabetic ketoacidosis, which was greater in the pump group compared with MDI group (17 v 5). In the first year, more patients using pumps than using MDI had several episodes (5 v 2). Most episodes of ketoacidosis were caused by infections and 18% by set failure in those using pumps. Only five episodes occurred when participants implemented all sick day rules.

Ancillary outcomes

No differences between the  groups were found in the generic quality of life and health status instruments.

The overall diabetes specific quality of life showed that both groups improved, more in the pump group than the MDI group, although not always reaching statistical significance.

Regarding diet restrictions and daily hassle, the pump group had better outcomes.

The pump group also had better improvement in treatment satisfaction at all time points but the difference was statistically significant at 12 and 24 months only.

The authors concluded:”People with type 1 diabetes might be better served by ensuring far greater availability of high quality, structured self management training, which is currently only accessed by around 10% of adults in the UK. Participants might only recognise the limitations of insulin delivery by MDI if they start actively managing their diabetes after training. Those individuals could then be offered pump treatment to help them reach the stringent glucose targets necessary to achieve an HbA1c of 6.5% or to overcome problematic hypoglycaemia.”

———-

Following some initial criticism to the BMJ article, the study authors response included the following:

“… our study by design meant we should exclude patients who had expressed a wish to use insulin pumps. … We also … excluded patients who met NICE criteria because the case for pumps (CSII) in that group is not in doubt. We have written to NICE to assure them that the results of REPOSE have no implications for the guidance in TA151. Our aim was to explore whether there was merit in extending indications for insulin pumps to a wider range of patients, including individuals whose HbA1c levels were far from target and who had yet to receive structured education to aid them in undertaking the complex skills of insulin self-management.

We believe that the priority of the diabetes community in the UK should be ensuring that individuals receive more effective structured training and ongoing support, issues we are addressing in ongoing research. In the meantime, as we conclude in our paper, pumps should be offered widely to individuals who are trained to manage their condition but find that the limitations of intermittent injections lead to hypoglycaemia or prevent them achieving tight glucose targets. The ambitious target of 6.5% HbA1c in the latest NICE guideline will increase their number.”

———-

The Association of British Clinical Diabetologists (ABCD) Insulin Pump Network UK has also published a position statement on the results of REPOSE, including the following:

“The results of the REPOSE (Relative Effectiveness of Pumps Over Structured Education) trial were published recently in the BMJ. The ABCD Insulin Pump Network Committee have become aware of a number of cases where the findings have been misreported and/or misinterpreted. We thought it would be helpful for readers of British Journal of Diabetes if we clarify the main REPOSE findings and implications for clinical practice in the UK…

By design, the REPOSE study excluded patients who met the … TA151 criteria for CSII, examining whether CSII should be more widely available in T1D. Importantly, the results of REPOSE are thus not relevant to the patients currently covered by the evidence-based recommendations of TA151 and who would still be considered for CSII. REPOSE provided DAFNE education to both arms, finding sustained improvements in both arms in glycaemic control and measures of quality of life, reinforcing the use of structured education as an effective strategy in T1D.

In summary, the REPOSE findings support the current NICE T1D pathway, with structured education being offered first and CSII therapy then being considered where patients are still struggling to achieve glycaemic goals safely as set out in TA151. Sadly, most patients with T1D in the UK have not been offered evidence-based structured education. Similarly, access to CSII remains patchy, with the level of provision of CSII being lower than in other comparable countries. There is a danger that misrepresentation of the REPOSE data could worsen this inequality.”

Comment from INPUT

Essentially, REPOSE backed up the criteria set by NICE TA151 for pump therapy, ie, structured education first, and then pump therapy if treatment targets are still not met. It is a failure of the system when some patients are only offered structured education in preparation for starting on a pump.

NICE TA151 still stands, along with its mandate that CCGs MUST provide funding for pump therapy if a patient meets the criteria and has the consultant’s agreement that a pump is required.

When NICE TA151 is reviewed at some point in the future, REPOSE will not have a negative impact on access to pumps. It simply shows that “pumps for all” cannot be supported by evidence.

If you believe you meet the NICE criteria for pump therapy and have been denied pump treatment, please contact us.

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DIaMonD study suggests CGM helps those on MDI

Two randomised controlled trials, recently published in the Journal of American Medicine Association (JAMA), suggest that Controlled Glucose Monitoring (CGM) greatly benefits people with type 1 diabetes (T1) who use multiple daily insulin injections (MDI), and not only the minority using insulin pumps.

The DIaMonD (Multiple Daily Injections and Continuous Glucose Monitoring in Diabetes)  and GOLD studies, the first to focus solely on the benefits of CGM for adult T1s who use MDIs, were commissioned by Dexcom, and conducted in the US and Sweden respectively.

While CGM is currently used mostly by T1 patients using an insulin pump, the study results prove the system to be both beneficial and user-friendly to those on MDIs. A minority of T1 patients use an insulin pump in the UK.

Results of both trials show that Dexcom’s CGM improves HbA1c levels more than conventional treatment; the device can be used directly for making diabetes treatment decisions instead of alerting patients to use a blood glucose monitor to determine treatment.

Study findings also reveal that CGM also helps detect hypoglycaemic episodes, resulting in fewer such attacks and their inherent risks.

The Dexcom CGM system was the first produced worldwide to interact with mobile phones, and may be used with both Android and iOS smartphones, with the need for only two finger stick checks daily.

The system is available in the UK to both T1 patients and those with Type 2 diabetes who are insulin dependent.

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Consultation / care planning tool

Are you fully involved in your care planning? Do you feel there’s more to good diabetes management than a ‘good’ HbA1c?

As part of their comprehensive commissioning pack, the London Diabetes Clinical Network includes a type 1 care consultation tool (developed by Health Innovation Network and King’s Health Partners), which can be used in the management of people with type 1 diabetes.

The Type 1 Diabetes Consultation Tool will help the person with diabetes (PWD) and the consultant to plan individualised care where the patient is fully involved in the process.

The first page is completed by the PWD either before they attend clinic or in the waiting room. It asks the user to note down things such as specific issues they wish to discuss, hypo awareness, confidence in carbohydrate counting, and the burden of diabetes.

Pages 2 and 3 will be completed by the PWD and consultant. Page 2 covers everything that should be in an annual review. Page 3 plots a comprehensive picture of their diabetes control, noting HbA1c along with hypo risk and living with diabetes (or diabetes distress score). There is space for treatment decisions and plans to be noted down. The consultant then takes a copy of the tool, leaving the original with the PWD to take home.

3 point dart board

As we mention in our Better Clinic Appointments page, decisions made in an appointment might be remembered differently by the doctor/nurse and the PWD, so this tool will help solve that problem. It also makes clear that a good HbA1c alone is not the mark of successful diabetes management.

If you think this tool might help your clinic appointments, why not print this page and show your clinic? Experience amongst staff in the London Diabetes Clinical Network shows that whilst it initially takes a little longer for an appointment, it gathers all the data that should be kept anyway, and soon becomes a welcome tool for efficient and high quality care. They suggest a clinic trials the tool with a few PWD before adopting it for every PWD with type 1.

A note of caution: the living with diabetes (or diabetes distress score) section will help clinicians who are not psychologists to spot distress which may have impact on the PWD’s glycaemic control. Many issues can be suitably managed by handling this well in the consultation room. However, if issues are identified which need psychology assessment and support, it would be unfair to uncover these issues and not act on them. The tool is based on research and referenced so that clinicians can make a considered decision on whether or not to adopt it and how to do so safely.

The explanation sheet for PWD can be found here.

The consultation tool is here.

The full commissioning pack is here.

 

 

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CGM commissioned in 8 North West London CCGs

Great news! The North West London (NWL) Clinical Commissioning Groups collaboration board has approved a proposal to commission Continuous Glucose Monitoring (CGM) for a defined cohort of adults with type 1 diabetes, in line with NICE NG17.

The NWL collaboration covers:

  1. Brent CCG
  2. Central London CCG
  3. Ealing CCG
  4. Hammersmith & Fulham CCG
  5. Harrow CCG
  6. Hillingdon CCG
  7. Hounslow CCG
  8. West London CCG

CGM funding is now available for patients aged 18+ registered with GPs in those CCGs if they:

  • meet the criteria for CGM set in NICE NG17, and
  • have been recommended to use CGM by their specialist diabetes care team

A spokesperson for NWL CCGs told us: “NWL CCGs are pleased to support the funding of continuous glucose monitoring devices in patients with difficult to control Type I diabetes.
Hypoglycaemic episodes can sometimes lead to potential serious and life threatening consequences, and as such we hope that by providing CGM devices to this subset of people with Type I diabetes we hope to improve patient care. NWL CCGs have worked collaboratively with local consultant diabetologists to develop a policy to determine which patients will benefit the most from a CGM device. Funding is available for North West London patients with Type I diabetes who meet our NWL policy criteria.”

This commissioning decision applies to the use of a CGM system with alarms (it does not cover Abbott FreeStyle Libre). Adults with type 1 diabetes who currently have an Individual Funding Request (IFR) for CGM will be contacted in due course regarding transitional arrangements.

Read the collaborative’s position statement here

To check which CCG your GP is in, find your GP surgery on www.nhs.uk and scroll down to the bottom of the main information page about your surgery.

Has your CCG approved a business case for CGM? Ask your CCG or your clinic. (NHS clinicians could also contact IPN-UK for further information on successful business cases.)

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MHRA warns against accepting trial of new insulin pumps by direct message on social media

Company adverts for new diabetes technology are a good way to find out what’s available and what might be coming. Responding to an advert and asking for information is also good. However, if you are invited by direct message on Facebook or Twitter to test a new pump without being supervised by your clinic, that is not good practice.

MHRA published a warning against changing your ‘insulin delivery device’ (pump) without medical supervision. There’s a good reason for this. Medical devices in the UK have to undergo stringent safety testing, and medical device companies have legal obligations to be able to deal with product issues in a timely manner. This is for our safety.

This is not about wanting a different brand of pump from those offered by your clinic. Any pump available on the NHS (even if not in your area) will have gone through those stringent tests.

If you are considering testing a new pump, please do so under the supervision of your clinic. If you are looking for a different brand of pump from those offered by your clinic, please see this page.

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NICE DG21: integrated sensor-augmented insulin pumps

INPUT welcomes the release of NICE DG21 on integrated sensor-augmented pump therapy systems for managing blood glucose levels in type 1 diabetes (the MiniMed Paradigm Veo system and the Vibe and G4 PLATINUM CGM system)

This is NICE’s positive first guidance on the use of sensor augmented pump (SAP) therapy. INPUT believes that the appropriate use of sensor augmented pump therapy is a vital step on the path towards the eventual availability of artificial pancreas systems.

DG21 applies to:

  • MiniMed Paradigm Veo System, used with Medtronic Enlite CGM sensors
  • Animas Vibe, used with Dexcom G4 PLATINUM CGM sensors

There is some confusion in the diabetes online community regarding NICE’s recommendations in DG21, so we would like to highlight five key points:

    • DG21 is a Diagnostic Assessment Report. Its recommendations are not mandatory, unlike a Technology Appraisal (TA). At this time, only a tiny minority of all people with type 1 diabetes in the UK are likely to receive NHS funding for sensor-augmented pump therapy under DG21
    • NICE TA151 remains the mandatory guidance on insulin pump therapy for both commissioners and diabetes care teams
    • DG21’s recommendations apply to the small number of people who are on an insulin pump already, doing frequent fingerstick blood glucose checks, and still having disabling hypos*
    • Strict criteria apply: SAP therapy is not a ‘lazy option’ for people who aren’t putting in the work to succeed on a pump without using CGM
    • A stand-alone CGM system may be beneficial to someone who is using a pump other than Animas or Medtronic, or to someone who is on multiple daily injections (MDI). DG21 does not intend to identify all situations in which CGM can be beneficial. It offers guidance regarding when providing an integrated SAP may be cost-effective for the NHS.

DG21 recommendations regarding specific systems:

Medtronic Veo + Enlite

  • Recommended for people who meet strict criteria
  • If you are already receiving NHS funding for the Veo + Enlite system for reasons other than the criteria in the guidance, NICE says you should be able to continue using it until you and your NHS clinician consider it appropriate to stop

Medtronic 640G + Enlite

    • Specifically excluded from DG21
    • The recommendation regarding Medtronic Veo + Enlite does not extend to Medtronic 640G + Enlite
    • If you are already using 640G with Enlite sensors, your care should continue

Animas Vibe + Dexcom

  • Not recommended for use by people who meet the strict criteria for Veo + Enlite
  • If you are already receiving NHS funding for the Vibe + Dexcom system for reasons other than the criteria in the guidance, NICE says you should be able to continue using it until you and your NHS clinician consider it appropriate to stop

All other pumps, with or without CGM

  • This guidance is relevant only to the MiniMed Paradigm Veo System and the Vibe and G4 PLATINUM CGM system
  • No ramifications for the use of any other pump systems, with or without CGM

*Disabling hypos are defined in the DG21 thus:
“People with type 1 diabetes may experience ‘disabling hypoglycaemia’, which is when
hypoglycaemic episodes occur frequently or without warning so that the person is constantly anxious about having more episodes. This can have a negative effect on quality of life.”

Note that this is not the same as ‘severe hypoglycaemia’ when the person needs third party assistance (from a friend for example, or by calling an ambulance). You will not lose your driving licence by talking to your clinic about disabling hypoglycaemia.

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