The inaugural ABCD T1DCC-UK webinar went ahead as planned on 27th February. There were over 60 live link-ups, including several clinical teams, for the event. This was a fantastic response, especially as much of the UK was covered in snow, making homeward journeys hazardous. Dr Jackie Elliott explained how to get the most out of Flash Glucose Monitoring with examples from her clinical practice. Professor Nick Oliver then set out clearly the latest evidence about the relative merits of Flash and
Continuous Glucose Monitoring for people with hypoglycaemia unawareness. The Q&A was lively and informative. My thanks to the speakers and to Mike Sobanja, who chaired the session for us.
If you missed it the link is still live on the T1 DCC-UK section of the ABCD website. The feedback suggested there is an appetite for webinars for T1 MDTs and the intention is to offer more in coming months. The first event was at 5pm which we thought would allow MDTs to finish clinical activities, grab a cup of tea and gather together in the seminar room to be educated and entertained. We know that worked for some (King's College Hospital tweeted about it), but others have suggested different times. It is clear that we will not please everyone, but I will circulate a doodle poll shortly to gauge opinion.
The webinar was funded by ABCD with a contribution from Dexcom. The speakers were suggested by the collaborative committee on the basis of their knowledge and expertise in the topics and, as stated in the disclaimers accompanying the webinar, the views expressed were their own and not necessarily those of the collaborative.
Session at Diabetes UK Professional Conference
It was a pleasure for me to chair the collaborative's first ever session at this conference in March. We were up against strong opposition from parallel sessions but almost filled the hall assigned to us. Our patient representatives were granted permission to attend as patient speakers. Emma Wilmot announced the launch of two much needed Best Practice Guides for insulin pump teams, supplies of which ran out before I could grab a copy myself! Never mind you can find them both on the website.
Anne Kilvert explained the background to the forthcoming Insulin Pump and Type 1 Diabetes Service Level Audit to be undertaken by the National Diabetes Audit later this year. (Applies to England and Wales, but I am assured the template will be offered to colleagues in Scotland and Northern Ireland). It has been road tested by members of the collaborative and seems to be fit-for-purpose. I echo her plea for members to ensure that their department completes and returns the audit in due course. The best way of ensuring you get the request is if the lead clinician for Type 1 Diabetes in your department registers to join the collaborative and identifies themselves as the lead.
Helen Hopkinson from the DAFNE Collaborative gave an inspiring talk on the impact that structured education for Type 1 Diabetes has had on outcomes, and plans for the future. Sophie Harris explained how she and like-minded colleagues had addressed the need for accredited educational material for people with Type 1 Diabetes by founding T1Resources. Finally, Partha Kar, NHS England's Associate National Clinical Director for Diabetes, described important work with NHS Digital on making educational resources available on-line for patients.
We finished (on time!) with a lively Q&A session. My thanks to the conference organising committee for making the session available, and we hope to do it again in 2019.
Committee Meeting 14 March 2018
We exploited the fact that most members of the committee were attending the DUK professional conference to hold an informal meeting immediately after our parallel session.
FreeStyle Libre: We noted this was available on prescription for selected patients with Type 1 Diabetes in parts of the UK, but that a postcode lottery existed. More areas were expected to approve it for the coming financial year, but others have declined to commission it.
Driving: The new legislation no longer specifies blood glucose monitoring before driving, but current DVLA guidance does. A letter had been sent to the Drivers' Panel asking them to consider making CGM and FSL acceptable alternatives to capillary testing before driving, arguing that the lower accuracy of tissue glucose monitoring systems is offset by trend arrows or low glucose alarms. There is a widespread perception that the consequence of two third party hypos was a three month driving ban, after which the licence would be automatically re-instated. This would not require the person affected to seek medical advice and treatment. We will seek clarification from the Drivers’ Panel.
Primary Care: David Millar-Jones, Chair of PCDS, is working on a position statement regarding the role of primary care in the management of people with Type 1 Diabetes. We all recognise the 'lost tribe' of people who seem to have opted out of any form of care for their condition, often because the care they have received has fallen short of what they expected. In addition the plight of those who find themselves away from home having forgotten their insulin supplies was discussed.
Psychological Support: Emily Robinson raised the nationwide shortage of clinical psychologists working with people with Type 1 Diabetes. This resonates with one of the priorities highlighted in the latest State of the Nation Report from Diabetes UK, and committee agreed to work with stakeholders to address this. Emily described the successful introduction in Leicester of group sessions for adults with T1 Diabetes who had difficulties managing their condition – evaluation available on request.
Wales: Sam Rice gave an update from Wales highlighting the introduction of FreeStyle Libre and the release of more videos to raise awareness of T1 Diabetes.
DKA in 16-18 year olds: The protocols for the management of DKA in adults (JBDS-IP) and in children and young people (BSPEN) are different. The risk of cerebral oedema developing during treatment is believed to be greater in children and the protocol has been written with this very much in mind. Although the adult protocol recommends that the BSPEN protocol is used in people up to age 18 years, in many hospitals any person 16 years or over presenting in DKA will be admitted onto an adult unit. Doctors working on adult medical admissions units have become familiar with the JBDS-IP protocol, but are unlikely to be familiar with the paediatric protocol. This has led to 16-18 yr olds in some
hospitals being managed according to the adult protocol. It is unclear whether these young people are at an increased risk of cerebral oedema as a result, or if it is less risky for them to be managed by a medical and nursing team using a protocol with which they are familiar. Ketan Dhatariya, lead author of the JBDS-IP guideline, has agreed to work with Fiona Campbell, Tabitha Randell and others to try to sort this out. The first step is a survey aimed at front-line staff in A&E and medical admissions units to determine the current UK practice in this age group. Please encourage staff in your hospitals to complete the
Patient Representative issues: The wording of clinic cancellation letters sent by many hospital departments was felt to be inappropriate. Liam McMorrow has offered to work with a small group to produce templates for clinical departments that were fit for purpose, mindful that 'Language Matters'. We will take him up on his offer.
Standards of Care for T1 Diabetes: The ABCD Standards of Care for the management of adults with T1 Diabetes document (updated 2017), is in need of revision to include new developments. It seems appropriate that the next edition should come from the collaborative. I hope Patrick Sharp, lead author of the current document, will agree to co-ordinate a small writing group to do this.
ABCD IPN-UK rebranded as ABCD DTN-UK This name change seemed very sensible, given that pumps is only part of the repertoire, and we are seeking to attract and retain the support of manufacturers of all types of diabetes technologies.
Diabetes Technologies Position Statement: A working group of experts in diabetes technologies, including patients, has produced a position statement that attempts to describe the most appropriate technological solution to a range of glucose control problems experienced by people with Type 1 Diabetes. It has been endorsed by Diabetes UK, ABCD and DTN-UK and will appear on the website as soon as it is published. Although not all options are currently universally available in the NHS, it is hoped that the document will form the basis for discussions with purchasers of health care about individualised care for people with Type 1 Diabetes. The biggest challenge has been achieving a common definition of
hypoglycaemic threshold for children and adults that reconciles existing published statements from ADCD and the IHGS.
OpenAPS: Some of our patients are not prepared to wait for closed loop technology to become available to them in the NHS and are turning to OpenAPS as a DIY option. They will do this whether their clinical teams approve or not, so DTN-UK has set itself the task of writing a position statement to help MDTs understand what it is, and what their patients are doing.
Whole of Life: June James announced the launch of the third edition of the Diabetes UK document End of Life Diabetes Care during the Professional Conference. This updated document contains useful recommendations for the care of people with T1 Diabetes.
- ABCD DTN-UK Meeting, Glasgow, 23 May 2018
- ABCD Spring Meeting, Glasgow, 24 May 2018
- Second Annual Birmingham T1 Diabetes Symposium, Birmingham, 14 June 2018
- Third ABCD Clinical & Commissioning News Live Event, London, Leeds, Taunton (and morning sessions via live webinar), 12 July 2018. Dr Parth Narendran is giving a State of the Art update on T1 Diabetes following his return from the the ADA.
- EXTOD Meeting, Manchester, 19 October 2018
- ATTN Conference, Berlin, 20-23 February 2019
Rob Gregory, Leicester