Help us raise awareness of the needs of children with heart disease with the Department of Work and Pensions.

Why does the Department of Work and Pensions exclude Heart Disease in Children from DLA guidance?

1 in 145 children a year are born with heart disease and a further unknown number develop heart disease in childhood. There are 3700 open heart surgeries carried out on children every year.

However, the DLA Assessors’ Guidance does not include congenital, inherited or acquired heart disease in children.

Children are often impaired by the heart failure, and the side effects of medication and surgical treatment. They will continue to struggle for life.

Each week, families all over the UK are trying to claim for DLA for their children’s care. Yet the assessors have no guidance available to them on the potential effects of childhood heart disease, the potential need for care nor the effect on mobility.

Number of pages in Assessors’ guide dedicated to
Cystic fibrosis: (1 in 2500 births) 36 pages
Leukaemia (4-500 cases a year 23 pages
Eczema 16 pages
Spina Bifida (1 in 1000 births) 15 pages
Bedwetting 10 pages
Coeliac Disease (1 in 2500 develop) 7 pages
Congenital Heart Disease: (1 in 145 births) 0 pages

Without that guidance, how can the applications of children with heart disease be fairly assessed? Claims that are unfairly rejected not only deprive the family of the financial support they so badly need, and the on going access to other help given to DLA claimants, it will mean that a young person will not be automatically considered for PIP, and limit their opportunities for work and education.

Join us in lobbying the Department of Work and Pensions to remedy this discrimination and hasten the inclusion of the needs of this group of children in the DLA Assessors Guide.

Post a picture of your child with this statement and hash tag.

“Let’s recognise that children with heart disease may have a disability and deserve DLA”