JDRF’s Covid and Beyond report reveals the impact of the Covid pandemic upon lives already affected by type 1 diabetes.
We commissioned social research to understand the varying pandemic experiences of different people affected by type 1 diabetes in the UK.
The experiences shared for the report depict an enormous withdrawal of NHS services during the pandemic, leading to starkly unequal access to type 1 diabetes care.
Our social research
The scale of our quantitative research involving more than 1,000 people, combined with the scope of our qualitative research with 40 individuals representing groups hardest hit by Covid, allowed us to contrast varying experiences of the pandemic.
It reveals similarities and differences between adults and children with type 1 diabetes in terms of the impact on their healthcare; and compares the experience of people with type 1 to the experience of people with other health conditions. It also reveals variations in the experiences of people who have lived with the condition for different lengths of time.
Our findings and recommendations
The findings of our Covid and Beyond report, launched in October 2021, are supported by recommendations that point the way for the NHS to build back an integrated type 1 diabetes service that optimises quality of care and support.
Among parents of children with type 1 diabetes, 45 per cent could not access their normal level of healthcare support during the pandemic. This rose to 63 per cent for adults living with the condition, significantly higher than people who have other health conditions
Many living with type 1 diabetes said that the Covid crisis has taken a toll on their physical and mental health
But those given type 1 diabetes technology choices before the pandemic felt better able to manage their condition during the crisis
Despite the major disruption to type 1 diabetes healthcare, a majority of adults (58%) with the condition felt the NHS had done its best to support them during the pandemic
JDRF’s recommendations are:
Increased access to type 1 technology is essential
A choice of virtual, telephone and face to face appointments to provide people with type 1 diabetes different ways to communicate with their healthcare professionals
Improved communication from the NHS, which needs to be more proactive when care is disrupted
People with type 1 diabetes must be at the heart of service design and delivery
“JDRF is committed to working with its partners in the NHS, government and other stakeholders on the adoption of the recommendations in our Covid and Beyond report, to help guide the rebuilding of NHS services and support.”
~ Karen Addington, Chief Executive of JDRF UK
Covid and Beyond highlights the impact of the Covid pandemic upon lives already affected by type 1 diabetes
“We’ve missed the face to face clinics, the peer support and get-togethers”
Emma’s daughter, Ivy, has type 1 diabetes. Since the start of the Covid-19 pandemic, all of Ivy’s appointments have been virtual, except for the most recent in March 2021 where she needed annual blood tests. The rest of the time Emma has managed at home with virtual appointments but has missed the in-person support that her team provides.
“It was lovely to see the team on screen but psychologically the effect of going into the hospital and seeing them in person is huge. Type 1 diabetes management is relentless but seeing them gives me a reset until the next appointment and relieves the pressure. Ivy hated having her bloods taken by me for her hba1c, through the entire year we didn’t get a single successful result.”
Overall, the biggest impact of Covid has been physiological.
“What we’ve missed is the face to face clinics, the peer support and get-togethers. The fear of her catching Covid, especially in the first half of the pandemic, was also very difficult.”
Emma also sees a greater need for people living with type 1 diabetes to use medical devices to help them manage their condition as a result of the pandemic, particularly children returning to school and other activities.
“A lot of parents are no longer allowed to attend sessions, sporting activities or events with their children, so things like continuous glucose monitoring (CGM) and flash monitoring especially are brilliant safeguarding tools for children.”
“An opportunity for a real rethink of diabetes care”
Adrian, who has been living with type 1 diabetes for 20 years, shares his story:
“Whilst I have never considered type 1 to have a seriously negative impact upon my life, I am very aware of its relentless omnipresence: the fact that it only remains relatively harmless to me because I constantly attend to its demands. I am therefore constantly aware of the potential impact of my every action on blood sugar levels.”
“The pandemic gave us all more thinking time, in that we were compelled to be less busy than normal, so my thoughts on type 1 were inevitably to the fore at times; this was exacerbated by frequent reminders of the added vulnerability to Covid that comes with diabetes of any type.”
“The pandemic presents an opportunity for a real rethink of diabetes care, which has always struck me as more than somewhat cumbersome and repetitive. A blend of remote and face-to-face seems highly desirable, with the balance between the two not necessarily the same for all.”
JDRF’s Covid and Beyond research and report is supported by the generosity of the Steve Morgan Foundation, which secured a Community Match grant for the charity from the Department for Digital, Culture, Media and Sport.
Find out more about Covid and Beyond
Covid and Beyond report
Read the full findings and recommendations in our Covid and Beyond report
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