Diabetes campaigners have hailed a “major victory” in a long-fought battle to make it easier for children with Type 1 diabetes to meet the assessment criteria for disability benefits.
Disability Living Allowance (DLA) is often awarded to parents of children with Type 1 diabetes to provide crucial financial support to help care for their child. But Diabetes UK noticed three years ago that an increasing number of parents were being denied the support they desperately needed, particularly those with a Type 1 diabetic child between the ages of 12 to 16.
Campaigners say guidance given to DLA assessors was misleading, and failed to correctly assess the care needs of children and called for the guidance to be reviewed.
Despite intensive lobbying of the Department for Work and Pensions (DWP), campaigners were initially denied a commitment by the department to improve the guidance given to assessors.
However, after joining forces with the Families with Diabetes National Network (FWDNN), and engaging with families through social networks, the issue was finally raised by MPs with the then Minister of State for Disabled People, Mark Harper.
Just last week, Diabetes UK and FWDNN finally managed to secure a meeting with DWP officials, who agreed to alter the guidance given to assessors to better recognise the care needs of children with Type 1 diabetes.
Chris Askew, Chief Executive of Diabetes UK, said: “For too long the guidance to Disability Living Allowance misrepresented Type 1 diabetes in a way that left the challenges faced by families of children with the condition unrecognised and their claims too often rejected.
“It failed to reflect an understanding of Type 1 diabetes and how hard it is to manage, both in young children and also in later adolescent years, when the onset of puberty and growth hormones can affect both the way that Type 1 diabetes manifests itself and a young person’s ability to manage their condition.
“This newly revised guidance is a big step forward for families and children with Type 1 diabetes because it clearly acknowledges the challenges and extra care required to manage this complex condition.
“We, along with others, have worked for many years to affect this change so I am delighted that the DWP has finally revised its guidance to reflect and account for the needs of families with children who have Type 1 diabetes, as we know that till now it has been hugely frustrating and inconsistent.
“Being able to get some financial help, if necessary, can make a huge difference to families who are often at breaking point.”
Neil Sykes, from the FWDNN, said: “There was an assumption that children with Type 1 diabetes should be able to look after themselves from the time they began secondary school.
“There was no understanding of the fact that managing the condition in teen years comes with a whole new set of challenges. Looking after a child or a teenager with Type 1 diabetes is almost a full-time job, with no let-up day or night.
“Furthermore, research shows that more intensive management improves blood glucose levels for children and therefore reduces their risk of developing long-term complications.
“Through sharing their own experiences and frustrations with their MPs, our wonderful families ultimately played a key part in getting the DWP to listen to and act on our concerns by revising this guidance.”
Dr Fiona Campbell, Clinical Lead for the National Children and Young People’s Diabetes Network, who worked closely with Diabetes UK to achieve the changes, said: “This updated guidance is a real victory for parents of children with Type 1 diabetes.
“Children and young people with diabetes need significant help and support to manage their condition and parents will now have a better chance of helping them to achieve this goal.”