JDRF, the type 1 diabetes charityCoronavirus (COVID-19) – information for people living with type 1 diabetes

Coronavirus (COVID-19) – information for people living with type 1 diabetes

Updated 14 April 2021 at 2.55pm.

Global headlines are dominated by news about the novel coronavirus. We know that many people with type 1 diabetes want more information and may be concerned.

Below are some useful links and information about the virus and what people with type 1 diabetes need to know.

New changes to each section have an [updated] date next to their title.

For all the latest Government measures, visit:

What is it? [updated 17Feb21]

Coronaviruses are a family of viruses that cause respiratory illnesses. Most of them cause illness in animals, but seven known types of coronaviruses cause illness in humans. SARS-CoV-2 is one of those viruses – it causes the illness COVID-19.

You may have heard the news headlines about variants of the virus. So far, scientists believe that vaccines will still protect against serious illness from these variants – although it is possible they may not work quite as well.

As the virus continues to mutate it may mean there needs to be annual vaccines – much like what we have with the flu seasonal jab. Scientists are already working on updating the current vaccines so they offer better protection against new variants – with indications that an updated vaccine to tackle variants may be ready by the autumn, if required.

What are the symptoms? [updated 10Apr21]

The symptoms of coronavirus are any of the following:

  • A new, continuous cough
  • A high temperature (fever)
  • Loss or change to your sense of smell or taste

Anyone in England, Wales, Scotland and Northern Ireland experiencing symptoms can book a test by visiting www.nhs.uk/coronavirus

Those unable to access the Internet can call 119 in England and Wales or 0300 303 2713 in Scotland and Northern Ireland to book a test. If you live in England, you can order free packs of rapid lateral flow tests (containing 7 tests) to be sent to your home in England.

Coronavirus and type 1 diabetes [updated 23May20]

We know that the news headlines about the emerging NHS data on COVID-19 and deaths relating to diabetes are concerning. That’s why JDRF has reacted to this by posting our news article.

Not everyone living with type 1 diabetes is at higher risk of becoming severely unwell with coronavirus, or of having complications from it. However, some, especially those who are older or with underlying risk factors, which include other health conditions, social factors or ethnic minority groups, may be more severely affected and everyone is encouraged to follow the Government advice closely.

Our comments on recent initial data are mentioned here. As further work emerges on risk factors and more specific guidance is available, we will share it. The higher risk in people with type 1 diabetes in hospital is strongly linked to older age, which is consistent with what we know about the impact of coronavirus on the general population.

All people living with diabetes have been advised to implement stringent social distancing measures. It is very important that you adhere to these and that you’re prepared by ensuring you have adequate medical supplies and consumables available, including access to ketone testing strips.

Children and type 1 diabetes [updated 26Jan21]

The research and data on COVID-19 and children with diabetes is currently extremely limited.

  • Limited evidence suggests that children and young people have lower susceptibility and transmission rates of COVID-19
  • At present, there is no evidence to suggest that children with diabetes are more prone to being infected with COVID-19 compared to other children without diabetes
  • There is also no evidence that children with diabetes are more likely to be infected with COVID-19 paediatric multisystem inflammatory syndrome compared to children without diabetes
  • It is important that children with diabetes continue to be vigilant, especially around handwashing and social distancing
  • Children and families should follow the principles of management of diabetes sick days rules if they are unwell and be advised not to delay access or attendance of health care provisions
  • Children and families are encouraged to continue maintaining a healthy lifestyle and to optimise their diabetes management

There is more information within this ACDC publication and here.

Coronavirus vaccine [updated 14Apr21]

You will have likely seen recent promising results of coronavirus vaccine development and the approval of the Pfizer/BioNTech, University of Oxford (AstraZeneca) and Moderna vaccines in the UK by the Medicines and Healthcare Products Regulatory Agency (MHRA). These vaccines help prevent the disease COVID-19 which is caused by coronavirus. The MHRA ensure all medicines and medical devices in the UK are safe before they can be given to the general population.

The Government has also ordered vaccines from other companies – we will continue to update this page when we know more as those companies haven’t shared results from their trials yet.

For those living with type 1 diabetes, we strongly encourage you to receive the vaccine when you are offered one. You can read more about how type 1 diabetes and coronavirus interact in the ‘Coronavirus and type 1 diabetes’ section above.

Progress is encouraging and current work is focusing on how long the protection from different vaccines may last and how effective they may be in stopping the spread of the virus.

Priority groups

The JCVI (the independent Joint Committee on Vaccination and Immunisations) has released guidance about priority groups and timings. There are currently nine priority groups, listed sequentially by their priority – see this link for more detail. The Government has hit its first vaccine roll out target – offering everyone in the top four priority groups their first dose by 15th February.

Unless they are 65 or older, live in a care home or work in the NHS, people living with diabetes are in group 6 (“People aged 16 to 64 years with underlying health conditions which put them at higher risk of serious illness or death from coronavirus”). The UK’s COVID-19 Vaccination programme key dates indicate that by 15th April the target is to have offered a vaccination slot to the rest of the priority groups. New guidance from JCVI advises adults that live with other adults who are immunosuppressed are also prioritised alongside Group 6.

If you live with type 1 diabetes and are therefore in priority group six and live in England, you no longer have to wait to be invited for your vaccine. You can now also book an appointment online to receive your vaccine or call 119 free of charge, anytime between 7am and 11pm seven days a week.

There are currently differences in how England, Wales, Scotland and Northern Ireland are rolling out the vaccine. If you feel that you should be invited to get yours, but haven’t yet had an invite, please speak to your GP or diabetes team.

Children

Most children can’t have the vaccine right now. This is because coronavirus vaccines haven’t been tested in children yet and children remain at a very low risk of developing a severe illness if they catch coronavirus.

The vaccines now available may be given to children who are 16 or 17 years old if they are ‘clinically extremely vulnerable’ or if they have an underlying health condition, like diabetes.

As trials with children are completed, we’ll get a better understanding of how safe and effective the different vaccines are within this age group.

Pregnancy 

If you’re pregnant, your healthcare team should talk you through the risks and benefits of getting the vaccine. Pregnant women are not generally advised to have the vaccine, but if you have a high risk of catching coronavirus because you’re a key worker, or have an underlying condition like diabetes, the benefits may outweigh the risks. You can also find more information for pregnant women from the Royal College of Obstetricians and Gynaecologists.

Side effects

You may have heard about some side effects after having the vaccine. Not everyone will experience these – and if you do – they are usually very mild and won’t last longer than about 48 hours.

There is more information available from MHRA (the Medicines and Healthcare Products Regulatory Agency) about possible links between the AstraZeneca vaccine and extremely rare, unlikely to occur, blood clots.

Common side effects include: soreness in the arm you had the vaccine, feeling tired, having a headache or general aches or feeling nauseous.

If you continue to feel unwell it’s important to implement and stick to your sick day rules recommend by your diabetes team.

You may also notice that your blood glucose levels go up after having the vaccine – this is normal and is because your body is beginning to build an immune response. This is nothing to worry about. Your body is just reacting to the vaccine because the vaccine is new to you. Your body needs energy to produce this immune response, so it may release some extra glucose (sugar).

More information

For further detail and for the latest information, please ensure you visit the NHS Coronavirus Vaccine website or speak to your diabetes team.

You may have also heard about vaccine trials – this research will help increase the vaccine options available for coronavirus. You can sign up and learn more on the NHS Coronavirus Vaccine Registry.

Reducing your risk [updated 23Feb21]

On 22nd February 2021, the Prime Minister announced a new four-step plan to ease restrictions across the United Kingdom. As things are rapidly changing please ensure you check the latest information and guidance for where you live regularly. For all the latest advice and key dates across the four nations of the UK please follow these links:

However, the advice for people living with diabetes across the UK has not changed:

  • We strongly encourage you to receive the vaccine when you are offered one – remember you no longer need to wait to be called forward (see the ‘Coronavirus vaccine’ section above)
  • Minimise contact with people outside of your household if you live within an area where you’re still allowed to meet inside other people’s homes
  • Follow social distancing measures at all times. This includes keeping 2 metres apart from other people where possible
  • Wash your hands regularly for at least 20 seconds
  • Wear a face covering (see below)
  • Remember – if you’re already self-isolating or shielding keep following those rules
  • Download the relevant COVID-19 app for your country (see below)

If you have diabetes and you’re planning on inviting friends or family into your home (if you’re allowed to do so), speak to them about whether they have had coronavirus symptoms in the last 2 weeks. However mild these symptoms, they shouldn’t be visiting. Find out more about these changes on the Government website.

We also recommend downloading the NHS COVID-19 app if you are in England or Wales, the Test & Protect app if you’re in Scotland, or the StopCOVID NI app in Northern Ireland. These are contact tracing apps which are one of the fastest ways of knowing when you’re at risk from coronavirus. The more of us that use it, the better we can control coronavirus.

Face masks and coverings [updated 1May20]

It is possible that masks or face coverings can help reduce and slow the risk of virus infection. This is true for everyone, including people living with type 1 diabetes.

There are exemptions for some groups from wearing face coverings but this varies depending on where you live. For more information, keep up to date with your national Government websites around face coverings:

If you see others not wearing a mask, there may be invisible reasons for this. For those that are exempt from wearing a face covering, there are badges and cards that can be printed or saved onto your phone. You can find these on the Government website.

We understand that wearing a face mask can take time to get used to and may feel strange to start off with. There are various different types of face coverings available, so try and choose one that suits you best.

Shielding advice [updated 10Apr21]

Shielding is a way of protecting ‘clinically extremely vulnerable’ people who are at a very high risk of severe illness and needing to go to hospital if they catch coronavirus. It means staying at home almost all of the time, with no face-to-face contact.

Unless they have another condition, most people with type 1 diabetes are not in the shielding category; you can view more detail about those who are defined as clinically extremely vulnerable here. People with diabetes are generally in the ‘clinically vulnerable group’. So, having diabetes doesn’t automatically mean you need/needed to shield.

As the UK begins to ease lockdown measures the advice for ‘clinically extremely vulnerable’ people to shield will be coming to an end. You may have heard news that from 1st April 2021 people who are clinically extremely vulnerable will no longer be advised to shield. Everyone on the Shielded Patients List will receive a letter from Thursday 18th March informing them of the guidance changes. This will include practical steps about how to reduce the risk of catching COVID-19. Those with an email address registered with their GP may also receive an email. Whilst this is good news and shows that virus rates are continuing to fall, it is worth remembering that the most effective ways to avoid catching coronavirus and to help prevent the spread is to continue with the advice covered in the ‘Reducing your risk’ section above.

QCovid and more people in England added to the list of clinically extremely vulnerable

Back in February 2021, you may have heard the UK Government announced a new system of identifying and protecting individuals in England who were at the highest risk of serious harm if they caught coronavirus. This meant a further 1.7 million people in England were classified as ‘clinically extremely vulnerable’. Those affected were contacted directly by the NHS. This approach was England-specific – although the Governments across the four nations considered how the QCovid model could be used for their own shielding policies.

The new tool – called ‘QCovid’ – is a population risk assessment tool enabling those at higher risk – through their medical records – to be added to the shielding groups. The risk calculator is based on a number of factors including age, diabetes subtype, ethnicity, post code, weight and other conditions. It’s worth noting some of these people would have already had their vaccinations due to being in a higher priority group already – i.e. age. Those that hadn’t had their vaccination yet were invited to come forward to the NHS as a priority.

We know it will have been distressing to have been told you were ‘clinically extremely vulnerable’ – especially this far into the pandemic – but we welcomed this move towards a more individualised assessment of risk and the additional protections this provides to those people with diabetes at higher risk.

The following links will guide you to Government advice on shielding and protecting ‘clinically extremely vulnerable’ people:

We know some people may not have friends and family able to help while they are isolated at home. The NHS Volunteer Responders scheme has been set up in England to do just that – with an army of volunteers helping with things like shopping and medication, as well as setting up phone chats to help with loneliness. People with diabetes who are isolated at home can now access this service. The number to call is 0808 196 3646 and you can get more information about the service on the NHS Volunteer Responders scheme website.

Dedicated diabetes helpline [updated 9Feb21]

NHS England and NHS Improvement have launched a new helpline in response to disruption to normal diabetes services due to the COVID-19 pandemic and response.

The service is for adults living with diabetes who use insulin to manage their condition and require clinical advice. Where routine care has been disrupted, the helpline is available for clinical advice to help you understand how to effectively manage your diabetes.

You can access this through Diabetes UK’s helpline by:

  • Calling: 0345 123 2399, Monday to Friday, 9am to 6pm
  • Email: helpline@diabetes.org.uk
  • If you’re in Scotland call: 0141 212 8710, Monday to Friday, 9am to 6pm. Email: scotland@diabetes.org.uk

What should I do if I have any symptoms? [updated 20Jul20]

It is important if you have symptoms, however mild, that you follow all the latest advice.

Ensure you continue to monitor your blood glucose and implement your sick day rules, checking for ketones more closely. Contact your diabetes specialist team if you feel you need additional support for your diabetes, or if you feel you might be at risk of developing DKA (diabetic ketoacidosis).

Do not go to a GP surgery, pharmacy or hospital. Only contact the NHS 111 service (by phone or online) if:

  • You feel like you cannot cope with your symptoms at home
  • Your condition gets worse
  • Your symptoms do not get better after 7 days

For any medical emergency, continue to call 999.

Prescriptions

We know these are challenging times, and getting hold of your prescriptions may be a concern. However, pharmacies across the country are working hard to make sure you can get hold of what you need. It’s important to plan ahead and to check levels of your prescription items, and where possible order at least 14 days ahead before your prescription is due. Ask your prescriber about electronic repeat dispensing, so you can order your repeat prescriptions online.

It’s important that you don’t go to a pharmacy if you, or anyone in your household, have any symptoms of Coronavirus. Many pharmacies offer an online service, and are encouraging customers to choose that method and have their medication delivered. You also don’t currently need to sign for these deliveries; check with your pharmacy for further details.

If you do need to collect your prescription, put your contact details on prescriptions so pharmacies can let you know when your medicines are ready, so you won’t need to be in the pharmacy for as long. Please don’t ring the pharmacy unless it’s urgent.

If you’re self-isolating, see if family, friends or neighbours can pick up your medication for you. If you don’t have anyone who can collect your medicine, speak to your community pharmacy for advice about how they can help. There might be community or voluntary groups ready to help in your area.

If you’re well and can visit the pharmacy yourself, think about how you can help family, friends and neighbours who are self-isolating by collecting their medicines on their behalf (you may need to take ID with you and will need to know the name and address of the person you are collecting for).

Don’t ask for extra medicine. Continue to get medicines as normal and don’t stockpile.

School [updated 23Feb21]

Everyone, including children with diabetes, can get coronavirus. Usually children have very mild symptoms and we are not aware of any children with diabetes who have died from coronavirus in the UK. However, as with all people with diabetes, an illness like coronavirus can make it harder to manage a child’s diabetes and they still have a risk of DKA.

It is very important that you make sure children follow all social distancing and hand washing recommendations to reduce their risk of catching it. Schools should be practicing social distancing to prevent the spread of the virus. We know this is easier said than done based on the size of the school and particularly with younger children.

We understand you may be worried about the safety of children returning to school if they have type 1 diabetes. As always, reach out to your usual healthcare team and your school about your concerns. The school should be able to explain their processes for risk assessments and policies to keep everyone safe.

Insulin, medicines and diabetes tech

The Government has been working with industry and partners to constantly monitor the impact of COVID-19 on the UK supply chain of medicines and technology, and have implemented measures to protect UK patients. There is absolutely no need for anyone to stockpile insulin, diabetes medicines or technology. By doing so, you could risk others by putting additional pressure on the supply chain. Pharmacies have been asked to not support any patients who are trying to stockpile.

DTN-UK have been in contact with all companies supplying insulin pump, continuous glucose monitoring and flash glucose monitoring in the UK at this time. We can reassure all users of diabetes technology that none of these companies are anticipating significant interruptions to their supply chain due to the Coronavirus crisis. We would ask that people do not attempt to stockpile supplies of consumables as this is unnecessary and may create problems for other users. If demand remains as normal, there will be no shortages. Companies may experience short term supply problems with some items, as is usual, but if this occurs these are expected to resolve quickly. You will be contacted in the event that this situation changes. Some pump manufacturers have extended their pump warranties. If your pump’s warranty will expire in the next few months, check out the manufacturer’s website for more information. See more detail here.

Emotional Wellbeing during these times

We know the type 1 diabetes community are understandably worried and anxious about the virus, and how COVID-19 might affect you, your family or friends.

We have some helpful information on our Emotional Wellbeing page, or you may like to consider calling Diabetes UK’s helpline to talk to someone. The NHS ‘Every Mind Matters’ website has some useful and practical information, too.

Work [updated 23Sep20]

Current Government advice is to work from home wherever possible, however, if you do need to be in a physical work location your employer should be making sure your workplace is safe to minimise any potential risk to employees, including completing a risk assessment for you. We understand not everyone feels comfortable going back to a physical office – ensure you reach out to your employer to learn about the steps they’re implementing and to discuss your commute and adjustments that can be made, especially if you need to use public transport (such as avoiding rush hour). Also discuss whether continuing to work from home is a possibility. You may also find our Workplace Toolkit useful to help aide these discussions.

Travel [updated 7Jan21]

Current guidance from the Government has placed additional restrictions on travel. These restrictions differ depending on where you live so please ensure you check the relevant guidance before traveling:

The Foreign and Commonwealth Office is advising British nationals against all but essential international travel. Check out the UK Government website for all the latest updates on where and when you can travel.

For more information about travelling with type 1 see our travel pages. You may also like to explore our airport security work and travelling with type 1 kit.

Additional information

This page will be updated as official advice changes. It is maintained by JDRF UK’s Community Engagement team and is reviewed/approved by healthcare professionals.

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