Early identification is key to preventing complex and life-threatening complications from type 1 diabetes in children and young people, according to a National Assembly for Wales committee.
The Petitions Committee launched an inquiry after receiving a petition calling on the Welsh Government to introduce routine screening for the illness in children and young people.
The petition was submitted by the family of 13-year-old Peter Baldwin, who died in 2015. Peter was originally diagnosed with a chest infection by his GP but became ill the following day and was rushed to hospital. The paramedic who attended carried out a finger prick test and diagnosed type 1 on the spot. Unfortunately Peter was already too ill and died soon after.
The Committee was told that type 1 diabetes was a rare condition, and that some GPs may only see one new case during their career. Assembly Members learned there is low general awareness and recognition of the illness among the public and healthcare professionals. Despite this, there are approximately 1,400 children with diabetes in Wales, the vast majority of which (96%) have Type 1 diabetes.
The Committee heard concerns that a lack of access to equipment in primary care, such as the finger-prick blood glucose test, could also be a factor and that more needs to be done to improve awareness of type 1 diabetes amongst health professionals, including in identifying the "4 T's" symptoms of type 1 diabetes – Toilet, Thirsty, Tired and Thinner.
The Committee is recommending that questions about the 4 T's symptoms should be routinely asked when unwell children and young people see a GP or other health professional.
It also recommends that the Welsh Government should ensure that NICE guidance on diagnosis of type 1 diabetes is consistently implemented across Wales, including that suspected cases are always immediately referred to specialist care.
"It goes without saying that the loss of a child is, thankfully, largely unimaginable for most people and the tremendous courage of Peter's family in seeking to use such awful circumstances to prevent the same situation happening to others should command enormous respect," said David Rowlands AM, Chair of the Petitions Committee.
"The Baldwin family, particularly Beth, Stuart and Lia, have courageously strived to ensure that the tragedy experienced by their family should lead to improvements in awareness and identification of type 1 diabetes in children.
"Prompt diagnosis is critical as the onset of the illness can be extremely rapid and very dangerous.
"We fully support the petition and are calling on the Welsh Government to do more to raise awareness of the dangers of type 1 diabetes and how to spot it throughout the NHS.
"I'd like to thank the Baldwin family for their bravery and the positive approach they have taken during the petitions process and in working so hard to raising awareness of this issue."
The Committee makes 10 recommendations in its report, including:
The Welsh Government should seek to ensure that the 'Four Ts' symptoms of type 1 diabetes are routinely asked when unwell children and young people present in primary care, and that appropriate diagnostic testing, for example through the use of finger prick blood glucose testing, is carried out immediately when symptoms which could be indicative of type 1 diabetes are present;
The Welsh Government should ensure that NICE guidance on diagnosis of type 1 diabetes is consistently implemented in NHS Wales. In particular by ensuring that primary care clinicians are aware of the Four T's symptoms of type 1 diabetes and the urgency of appropriate testing, and that cases of suspected type 1 diabetes are always referred for specialist care immediately; and,
The Welsh Government should seek assurances from health boards that appropriate blood glucose testing equipment is available in all relevant primary care settings, and that all GPs have access to equipment which can help to identify potential cases of type 1 diabetes upon presentation.
The report and its recommendations will now be considered by the Welsh Government with a debate to be held during Plenary in the autumn.
Read the full report:
Petition P-04-682 Routine Screening for Type 1 Diabetes in Children and Young People (PDF, 771 KB)