Parents and carers of children with PKU perform the extremely important job of safeguarding their children’s normal development.  We know this is not always easy.

For some families, the caring role can extend into their children’s adult life, especially for families with children with late diagnosed PKU.

Benefits and rights

Carers of children with PKU can apply for Disability Living Allowance which is a tax free benefit.  People over the age of 16 may be able to apply for the Personal Independence Payment.  In some instances, Carers Allowance may be payable.

Carers of children and adults with health conditions can have additional rights in the workplace.

We have produced detailed guidance on applying for Disability Living Allowance and Personal Independence Payment which is available from our helpline.  We can also give advice and support where this is needed.

You can also contact general advice organisations such as:

Carers UK

Citizens Advice