A new report from JDRF finds almost one in two UK adults with type 1 diabetes (47%) believe the Covid pandemic – and the disruption to NHS diabetes services it triggered – is likely to have a long-term impact on their life with the condition.
JDRF surveyed more than 1000 people living with type 1 diabetes, or caring for a child living with it, to reveal their experiences through the upheavals of the Covid pandemic. The findings of the report reveal the impact of the withdrawal and repurposing of many NHS diabetes services on people with type 1. JDRF’s report, entitled Covid and Beyond: Confronting the Unequal Access to Type 1 Diabetes Healthcare sets out a series of recommendations, anchored in the needs of people living with type 1.
The survey found that half of adults with type 1 said they felt unsupported at times during the Covid crisis, with 63% of adults reporting they were unable to access their normal level of healthcare support. This is significantly higher than adults living with other health conditions, such as cancer or heart problems.
The study highlights the experiences of those most likely to be hardest hit by the effect of the pandemic: through qualitative interviews with people with type 1 in lower income households, ethnic minority communities and people living with type 1 as well as other long term health conditions. The report found that there was a range and variation of care, according to particular local specialist and primary care service provision.
The report shows that people with access to type 1 wearable medical technologies such as insulin pumps, flash and CGM felt better able to manage their condition during the pandemic.
Recent studies have found that people from socially deprived areas, ethnic minority backgrounds, and older people who were diagnosed longer ago typically have lower usage of type 1 diabetes technology, making them potentially worse off throughout the pandemic.
A further finding identified that adults living with type 1 reported greater disruption in their diabetes health care services than parents with children living with the condition.
Adrian Long, of Lancashire, who lives with type 1 diabetes, feels that his wearable medical technologies and education in type 1 diabetes self-management meant that he was better prepared during the crisis, in the absence of NHS diabetes support. Adrian says he did benefit from a “seamless” upgrade to his flash glucose sensor device during the pandemic, thanks to a “very supportive GP.”
But speaking of his type 1 diabetes NHS care, he said: “I have not seen my hospital team in almost two years, and my only interactions have been by phone – not even video calls. Likewise I have also not seen my GP for an annual diabetes review in almost two years, but again, have spoken by phone instead. I would very much hope that my next scheduled reviews, due at the end of this year, will be face to face, not least for those overdue foot and injection site checks.”
The report’s recommendations are:
- Increased access to type 1 technology
- 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 to be at the heart of service design and delivery
UK Chief Executive of JDRF Karen Addington said: “Our recommendations point the way for an NHS that can build back an integrated type 1 diabetes service, that optimises quality of care and support, as well as positive outcomes for those living with the condition. People affected by type 1 diabetes hold expertise. Such expertise is valuable for clinical adaptation as we move beyond Covid.”
She added: “Despite the major disruption to type 1 diabetes healthcare, 58% of adults living with type 1 diabetes felt the NHS had done its best to support them during the pandemic. This reflects an admiration of NHS staff and their efforts throughout the pandemic that we at JDRF share.
“JDRF is committed to working with its partners in the NHS, government and other stakeholders on the adoption of the recommendations in our report, to help guide the rebuilding of NHS services and support.”
Read the full report here.