INPUT’s Lesley Jordan in Diabetes Times

The latest edition of Diabetes Times includs an interview with INPUT’s Chief Exec Lesley Jordan. Read the interview here.

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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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Levelling Up: Tackling Variation in Diabetes Care

Yesterday (23rd November 2016) Melissa and Lesley attended the All Party Parliamentary Group for Diabetes reception where the group launched its latest report, “Levelling Up: Tackling Variation in Diabetes Care”.

INPUT's Melissa and Lesley with Jonathan Valabhji

INPUT’s Melissa and Lesley with Prof Jonathan Valabhji

Hosted by APPG for Diabetes chairman Keith Vaz MP, it was also attended by people with diabetes, representatives from JDRF and Diabetes UK, healthcare professionals, MPs, Lords and the National Clinical Director for Obesity & Diabetes Professor Jonathan Valabhji.

Secretary of State for Health, the Rt Hon Jeremy Hunt MP welcomed the report and spoke of the importance the government places on prevention of (type 2) diabetes and accessible structured education for people who have been diagnosed with type 1 or type 2. He also mentioned the need to embrace technology.

The report itself notes the variation across the country in accessing insulin pump therapy, citing local funding issues, staff training and lack of patient education as potential barriers.

It notes the great work done by the South London HIN to improve pump services and uptake. INPUT would be delighted to see other regions running similar service improvement programmes.

The report also notes how difficult it can be for people to access CGM even when they meet NICE criteria.

The report makes several recommendations to local health economies, Health Education England, NHS England and the Department of Health.

Follow this link to the APPG for Diabetes website where you can download the full report and recommendations.

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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 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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INPUT FUSION 2016 – it’s a hit!

INPUT FUSION 2016 was a great success, thanks to the 57 people with diabetes (PWD) who attended. Thank you for your willingness to share information, your own experiences, ideas and stories in forging new friendships.




A few people travelled for more than 4 hours to get there, and most travelled for more than an hour.

The highlight of the day for most people was meeting other PWD, although the technology exhibition was a close second.

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The partners & carers group gained so much from each other that they stayed together for all 4 sessions.

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Stands run by Diabetes charities Diabetes UK, JDRF and DWED (Diabetics With Eating Disorders) were also very popular and PWD found new sources of information and support.


Many people commented on how good lunch was – one attendee said it was better than any wedding banquet she had attended! Several people mentioned in conversation that the gluten-free and veggie options were better than expected.

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Everyone who filled in a feedback form said the £10 ticket price was good value for money, and many asked INPUT to do it again.

Things that weren’t so well liked were: inability to hear in the bigger groups, little chance to speak in the bigger groups, waiting at the start for the sessions to be determined, and the lack of front-led sessions. We have taken these comments on board as we start planning for INPUT Fusion 2017.

Next year, INPUT will lead sessions on access/funding for both insulin pumps and CGM, with opportunities for Q&A.

We will introduce all the exhibitors individually at the start of the exhibition segment.

We will subdivide the discussion groups so it is easier to hear each other, and you’ll get more of a chance to chat about the things that interest you.

We have started planning INPUT FUSION 2017 – maybe one in the north or midlands and another in the south of England.

Look out for future #ifusion news on Twitter, Facebook and Instagram!

News pic thx


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“Why INPUT matters” article in Desang

Article about INPUT in the January 2016 issue


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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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Type 1technology – new guide for families

A NEW family-friendly guide to type 1 diabetes technology is available from today.

Different types of insulin pumps, flash glucose monitoring, continuous glucose monitoring; the technology options available to help people manage their type 1 diabetes day-to-day can certainly be confusing at times. This is especially true for those coping with a recent diagnosis.

Entitled “Type 1 Technology:  A guide for young people and families”, the guide aims to help families when they are talking to healthcare professionals about the technology on offer to them.

The guide has been jointly produced by type 1 diabetes charity JDRF, Diabetes UK and INPUT Patient Advocacy, with input from the National Institute for Health and Care Excellence (NICE). It highlights new recommendations from NICE on treatments and technology for children and young people with type 1 diabetes. It also gives an update on some technologies that NICE hasn’t made recommendations on.

The recommendations from NICE include aiming for tighter blood glucose control to improve the management of type 1 diabetes amongst children and young people. The recommendations should also improve access to continuous glucose monitors (CGM) and insulin pumps.

A National Diabetes Audit from 2013-14 found that 26,500 children and young people live with type 1 diabetes in the UK, with the number of people in total living with types 1 and 2 diabetes all together standing at more than three million.

Sarah Johnson, Director of Policy and Communications at type 1 diabetes charity JDRF, said:

“We know from our supporters that it can be confusing at times when seeing what technology is out there for people who live with type 1 diabetes, especially for children and young people. This new family-friendly guide will make life easier for young people who live with type 1 diabetes or their family in assessing what options are there to help them manage their condition.”

To read Type 1 Technology click here.


INPUT is the charity supporting patients’ access to diabetes education and technology, for more information and assistance. [or 0800 228 9977 (answerphone) if you do not have Internet access].

JDRF is the type 1 diabetes charity, improving lives until we find the cure. We fund research to cure, treat and prevent type 1 diabetes including a major initiative to speed up the artificial pancreas, a technology that could revolutionise treatment of type 1 diabetes.

Diabetes UK is the leading charity that cares for, connects with and campaigns on behalf of every person affected by or at risk of diabetes.

NICE stands for the National Institute for Health and Care Excellence. NICE is an independent organisation, set up by the Government in 1999. They make recommendations about how to best treat different health conditions, including diabetes. Their recommendations on diabetes are written by doctors, nurses and other healthcare professionals, and by people who have diabetes or care for someone with diabetes.

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Report on facilitation technology adoption in the NHS

This is why pump uptake is low despite a NICE TA and work by NTAC:

“NHS providers did not perceive any central ‘push’ from the Department of Health or the National Institute for Health and Care Excellence (NICE) to adopt, implement or diffuse new clinical technologies. There is a ‘bottom-up’ adoption culture: any trust could choose to adopt any, all or none of the three clinical technologies we investigated.”

2014 Facilitating technology adoption in the NHS

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