Paediatric diabetes

Coronavirus

We understand that our families are concerned about coronavirus. 

There is no evidence at present that children and young people with diabetes are more at risk of getting COVID-19. However we realise that it is more difficult to manage diabetes when you are unwell. There is information here to help you talk to your child about coronavirus [pdf] 1MB. 

You will need to follow the sick day rules [pdf] 364KB (ensure you have a working ketone meter and ketone strips). Please contact us if you need further information or are struggling to manage your symptoms. Click here to download our sick day rules. 

We recommend that you try and keep your blood glucose levels in range, have hypo (blood glucose below 4mmol/L) treatment available and keep a good supply of all your prescriptions.

Paracetamol is recommended to reduce fever, such as Calpol.

The best way to reduce your risk is to regularly wash your hands

Prescriptions

Continue to get your prescriptions as normal, DO NOT stockpile. Please be patient with your pharmacy they are likely to have a lot of requests. Give your pharmacy plenty of notice before you run out. We have not heard that there are supply issues at the moment, if you are having issues please email to let us know.

Why?

• Everything diabetes in one place – less calls and emails for you
• Paperless for a healthier planet
• Faster access to essential information – up to date advice and guidelines
• Travel letters / Sick Day Rules
• Age relevant videos for newly diagnosed patients
• Up to date contact information for your team
• Articles and events from your teams nurses, psychologists and dietitians

Coming soon – school care plan generation via app – three way editing between family/carer, school and diabetes team

How?

Download now or ask for help in clinic!

1. On downloading the DigiBete App, you will be asked to enter either ‘log in’ or ‘sign up’.(small writing at the bottom of the message or log in).
2.  You will need to press ‘sign up’ on your first visit
3.  You will then create an account and enter your unique clinic code.

Newham University Hospital  is: WP1P6 
Royal London Hospital  is:  QHYPP
Whipps Cross Hospital  is:  KMY2S

4. Turn your notifications on!

At diagnosis

Having a child newly diagnosed with Type 1 diabetes can be a very daunting time, we hope that when your child is diagnosed you are provided with all the information and skills you need to manage their condition. If you have any concerns or questions the diabetes team at Barts Health are available Monday - Friday via the nurses on call phone and via email. Out of hours each site has a way of getting emergency advice 24 hours a day - see the contact us section.

Below are some additional resources you may find useful through your families diabetes journey:

• At diagnosis we recommend you download Deapp. It can be downloaded to your phone as an app. You and your child can work through the videos, clips and games to learn about diabetes. You will be asked to complete several sections and be signed off as competent before you are discharged home after diagnosis.
• Digibete is an online resource providing video’s to support families with caring for their diabetes
• JDRF are an international charity who fund diabetes research focused on curing, treating and preventing Type 1 diabetes.
• Diabetes UK are an national charity that fund research and offer support for those with diabetes. Their website includes useful information for schools, parents, teenagers and young adults. There is useful infomation of how to complete the Disability Living Allowance form
• The book, Type 1 Diabetes in Children, Adolescent and Young Adults by Dr Ragnar Hanas is a detailed and useful resources if you want a deeper understanding of diabetes. It is a large book and covers all aspects of the research and knowledge about diabetes, to the practical management of diabetes, different life stages and practicalities. It is regularly updated with the latest research and developments.
• Carbs and Cals - We recommend using these apps to be able to accurately work out the carbohydrate content of your food.
• These are the Novo Nordisk Education Goals for children which we use during your annual review appointments.
• ISPAD is an international society whose aims are to promote clinical and basic science, research, education and advocacy in childhood and adolescent diabetes.
• We submit data to The National Paediatric Diabetes Audit (NPDA) each year. It reports on key care processes, outcomes and access to technology. The aim of the report is to improve the quality of care for children and young people effected by diabetes. You can access the parents and carer report here. Newham university got a mention in the 2017 - 2018 report for improving key care processes which we are very proud of. 

Companies that provide useful products and pump accessories

• Medical alert provide lots of different medical alert jewellery and ID tags
• Aquapac provide waterproof insulin pump cases
• Frio produce cooling pouches to prevent your insulin getting too warm on holiday or in hot weather
• IpSOX make insulin sock cases
• Funky pumps provide pump pouches and other diabetes products
• Spi-belt produce a small range of pump pouches

Support Networks

• The Families with Diabetes National Network is the network of the parent reps from each regional network of the country
  • The national network group have regional facebook pages; the south east coast and London network can be reached here
• There is a walthamstow parents support facebook page which can be reached here
• Children with diabetes is a advocacy group who are active in support families with diabetes and also have a facebook page

Consultants at The Royal London

Dr Ruben Willemsen (clinical lead), Dr Evelien Pease-Gevers , Dr Claire Hughes, Dr Rathi Prasad, Dr Pratik Shah

Consultants at Whipps Cross

Dr Paramita Cifelli, Dr Ashraf Gabr, Dr Prab Kalaivanan

Consultants at Newham General

Dr Ruben Willemsen, Dr Perveen Sultana, Dr Niki Paraskevopoulou

Lead Nurse Specialist - Paediatric Diabetes

Nicky Moor

Clinical Nurse Specialists - Paediatric Diabetes

Lisa Fuller, Saniya Akther, Tapi Mannie, Jenny Hurley

Paediatric Diabetes Specialist Nurses

Jade Effik, Rojina Begum, Jessica Kent, Elly Gallow,

Specialist Paediatric Diabetes Dietitians

Waseema Skogen, Chelsea Slough (Maternity Leave) , Sarah O’Toole, La'shay Atakora, Clarice Greenhalgh, Bahar Ghodsian

Clinical Psychologist in Diabetes

Shah Alam, Dee Khaira, Elizabeth Nash

Family support worker

Asma Khatoon

Support staff

Margaret Murphy (Medical Secretary), Yasmin Khatun (Administrator and Database admin, Royal London), Gulshana Begum (MDT coordinator, Royal London), Bianca Barnett (Admin Assistant, Newham), Jacinth English (Pathway Co-ordinator, Newham), Fozayel Kadir (Whipps Cross co-ordinator), Nishal Patel (Database Manager)

Downloading your meter

It is really useful to download your meters / pumps prior to clinic. We know that the more you look at your own data the better your diabetes management will be.

We do not get updates on when you upload your device. Please call 07889 591 637 or email us to let us know you have done this. We will usually have a look at the download and call you back.

If you use a blood glucose meter, Roche expert meter, Freestyle Libre, Omnipod or Roche Pump you can download to Diasend.

Below are instructions on how to do this.

• Go to the diasend website (maybe save this in your favourites) and click on 'Register Here'
• Enter your email, enter personal details and then opt to share your data but entering the correct clinic code, depending on which hospital you attend to see your diabetes team
  • Royal London - 62-29236
  • Whipps Cross - 29-31999
  • Newham - 39-66567
• Log in with your email and password

• Click on the tools tab
• Connect your meter or pump to the computer with a USB cable (Real time cable). It will upload to 100%
• Now when you go to the diasend website and log in, you should be able to look at your downloaded results

How do I get a cable?

If you are on a dexcom, Omnipod or Roche pump you should get a cable in your started pack. If you are on a Roche expert meter you will need to call Roche: 0800 731 22 91. Ask for a Roche Real Time Download cable, you should be given one for free.

Upload Roche EXPERT meter with Diasend 

Upload Omnipod with Diasend 

Upload Pump with Diasend 

Freestyle Libre

Libre View is the online website. You need to log on and enter the practice code dependant on which hospital you attend.  You can upload your Free Style Libre reader using the yellow cable that came in your start up box.

• Royal London  – 14771901
• Whips Cross  – 14149240
• Newham – 05610275

If you have a Smart phone with NSF technology you can download the Libre Link app, this allows you to swipe your phone over the Libre to look at your results.  If you want to share this data with us, again you need to enter the above clinic code.

LibreLinkUp app is for parents / carers who’s child / young person has the Libre Link app to allow them to see when the young person has scanned and what their results are.

If you need help using your device you can contact us or Freestyle Libre website includes lots of handy video guides

Medtronic Pumps

Medtronic pumps can be uploaded using carelink personal website. You will need to log in and then download the carelink uploader software.

If you have issues call the Medtronic help line: 01923 205 167 or watch the video below:

 

Pump companies have been in close contact with us; they are telling us that they do not have supply issues and are continuing to provide supplies as normal.

View this guide [pdf] 159KB for onmipod details.

For Medtronic details please view the warranty extension letter [pdf] 109KB, preparedness and support leaflet [pdf] 164KB and customer letter [pdf] 66KB

Medtronic Set Change Videos

Quickset cannula with 670G

Quickset cannula with 640G

Mio cannula with 670G

Mio cannula with 640G

Mio Advance cannula with 670G

Mio Advance cannula with 640G

Tandem Tslim Set Change Picture Instructions

A picture guide on inserting Autosoft 90 Cannula

Omnipod Pod Change Video Instructions

Omnipod - Pod Change guide videos can be found at this link 

Omnipod Dash - Pod Change guide videos can be found at this link 

Dana I Instructions

Fill Reservoir

Insert Cannula

Do you suspect Diabetes?

Be aware that the characteristics of type 1 diabetes in children and young people include:

• Hyperglycaemia (random plasma glucose more than ≥11 mmol/litre)
• Polyuria
• Polydipsia
• Weight loss
• Excessive tiredness

Refer children and young people with suspected type 1 diabetes immediately (on the same day) to a multidisciplinary Paediatric diabetes team with the competencies needed to confirm the diagnosis and to provide immediate care. There is no need to request a fasting blood glucose if a random glucose is ≥11 mmol/litre, or there is glycosuria or HbA1c >48 mmol/mol.

New referrals

Referrals for new patients should be discussed with on-call consultant for paediatric diabetes and endocrinology or paediatric consultant of the week. Call the relevant hospital (Royal London, Whipps Cross or Newham University Hospital) switchboard. Send the young person directly to paediatric A&E.

If your diabetes team have started to talk to you about transition it means you have reached an exciting stage in your life. It’s a time of new beginnings, including friends, education or employment. You will be thinking about the future, independence and having more freedom to make your mind up about stuff.

This will also include your transition with your diabetes. Transition means getting ready to move from the paediatric diabetes service to the adult diabetes service. You will be invited to a new clinic with some familiar faces and new ones looking ahead with you and supporting you through these exciting times.

This video will tell you more about what this is about:

Will there be any changes to my care?

From the age of 14 you will have the opportunity to attend the first half of your clinic appointment on your own to talk to the diabetes team.

Legally, we will always need to see you with your parents up to the age of 16.

After you have turned 16, we can see you by yourself. Often, your parents would still be involved with your diabetes care and it is fine to bring them in if you would want to.

Ready Steady Go clinics

From 16, you will be offered to attend RSG clinics. The nurse and dietitian will talk to you about grown up issues and diabetes such as university, driving, alcohol and relationships etc. 

It is a great opportunity for you to talk about how diabetes fits into your life and helping you to become independent.

Depending which clinic you attend your transition process will be slightly different:

Royal London Hospital

You can either move on to the adult diabetes team in Mile End Hospital or St. Bartholomew Hospital. From the age of 18 years you will meet the adult diabetes team in your usual paediatric diabetes clinic. We do these joint clinics a few times per year, so you can get to know the adult teams before you move on at 19 years old. 

Newham University Hospital

We will see you in the teenager’s diabetes clinic from the age of 15 until 19. When you are ready to move on to the adult diabetes clinic we will have one joint appointment with the adult diabetes team to introduce you to them. The adult diabetes team has clinics in Shrewsbury Road.

Whipps Cross Hospital

Between the ages of 16-19 years you will continue to be seen in children’s outpatients with the familiar faces of the nurse and dietitian from the paediatric service plus a doctor from the adult service. When you are ready to move on you will go to the young person’s clinic at Whipps Cross Diabetes clinic.

Topics to explore as you prepare to transition

With all the life changes ahead of you, we will discuss topics to support your independence and ensure diabetes fits into your lifestyle. We will let you know where you can get more information from and there are some links below.

• Having a healthy diet and lifestyle
• Eating out
• Driving
• Looking after your mental health and emotional wellbeing

• Managing seeing your GP, medical team and picking up prescriptions
• Holidays and / or festivals
• Living independently
• Careers, university, college or work
• Relationships and family planning
• Tattoos and Body Piercings
• Puberty and Menstruation
• Alcohol
• Smoking and help to Stop
• Drugs
• Personal Independence payment (PIP) and finances

Social Media & Web Links

There is a large online diabetes community which may help you feel more supported

• Twitter: @JDRF, @ninjabetic1, @BartsCYPDiab or search #T1D #Diabetes
• Youtube: Diabetes UK,#Type1uncut
• Digibete Films and Rescources
• Diabetes UK - Information for young adults
• JDRF university Toolkit

Be careful with what you read online. Always consult your team prior to making any changes to your diabetes treatment.

School menus

The accurate carbohydrate (carb) counting of school menus is an important part of achieving good diabetes control for children and young people with Type 1 diabetes. Inaccurate entry of carbs can lead to too little or too much insulin being delivered.

Unfortunately, we cannot carb count the menus of all the schools we cover and so we rely on parents/guardians and schools working together. You can download our guide to carb counting school menus 417KB.  

We recommend using the Carbs&Cals App

County Council school menus

We endeavour to carb count school meals when they are provided by the council in Newham, Tower Hamlets and Waltham Forest; please contact the team or look on our website if you have not been provided with one.

• Tower Hamlets: Tower Hamlets primary carb counted menu [docx] 37KB
• Newham: Juniper Ventures carbohydrate values for Newham primary schools [docx] 23KB  and Olive carbohydrate counting menu[docx] 78KB
• Waltham Forest:  Waltham Forest Primary winter menu [pdf] 523KB

We have not currently been provided with menus for secondary schools as these are not standard across boroughs.

Key points:

• Portion sizes are not defined for children and young people with Type 1 Diabetes and they can eat the same as any other child.
• Insulin doses are affected by the amount of carbohydrates contained in the food. The portion size dictates the amount of carbohydrates in the food.
• The portion size needs to be accurate to +/-10% to ensure accurate carb counting and therefore correct insulin delivery.
• A discussion should be had between parent / guardian, the school and catering teams as to the most practical, safe and effective method for ensuring accurate portion sizes are plated up, carbs calculated and insulin delivered.
• School are required to make reasonable adjustments to ensure that young people can have school meals as their peers do and many of the schools we deal with do this brilliantly.

School trips

Parents/guardians should be advised on the catering arrangements when children attend school trips in advance. If a packed lunch is required, parents/guardians should advise school on the carb content of each lunch item. If outside catering is to be used; the carb counting of the meals should be done by parents/guardians prior to the trip.

Fussy/un-eaten meals

A child with diabetes should have the same requirement to finish their meal as any other child. If a small amount of the meal is left, monitor the child for the following 90 minutes to ensure that if the child has a hypo (<4mmol) it can be treated effectively. You may gently encourage the child to finish their meal, however, we do not advocate force feeding. If fussy eating or food refusal is common, speak with parents/guardians contact diabetes team to discuss further individualised advice.

School trips and residential trips

• There is no reason why children/young people with diabetes should not be able to go on residential trips, but staff will require further training regarding their daily diabetes regimes.
• Activity holidays will need a change in insulin and food will need to be carb counted.
• We provide personalized care plans for particularly active trips.
• Contact the diabetes team for support with this.

Diabetes UK has lots of resources online for school and for parents which can be accessed here. They asked children and young people to create videos about managing their diabetes in school. We really love them.

We work together with the clinical research facility to perform clinical trials in diabetes. We are currently involved in several clinical trials, including:

• ADDRESS2 (Database for patients with Type 1 Diabetes)
• INNODIA(An innovative approach towards understanding and arresting Type 1 Diabetes)
• ‘closed loop insulin pump trials in collaboration with Cambridge’
• “Ertugliflozin versus Placebo in Paediatric Type 2 Diabetes” study

Networks we are part of

• Set up in 2010 the National Children and Young People’s Diabetes Network bring together 10 regional groups to support standardisation of care, sharing of good practice and maintaining high quality standards.
  • Barts Health is part of the North East Thames group, part of the larger South East Coast and England region. There is also a Families with Diabetes National Network who provide a voice into the regional networks
• Set up in 2008, SWEET aims to improve secondary prevention, diagnosis and control of type 1 and type 2 diabetes in children and adolescence. The Royal London Hospital is a SWEET centre of reference
  • European Reference Networks are virtual networks involving Reference Centres across Europe. They aim to tackle complex or rare medical diseases or conditions that require specialised treatment and a concentration of knowledge and resources. SWEET is one of these networks.