Inherited Metabolic Disorders are life-long conditions and patients have a wide range of symptoms and needs. We are here to support you with those challenges and to offer advice on where to get the best help. Benefits can offer much needed financial support to eligible families, but can often be confusing to understand, and sometimes to obtain. 

Although people with some conditions, and their friends and family, may not describe the condition as a disability, the words ‘disabled’ and ‘disability’ are often used when discussing benefits. Depending on the individual needs, patients and/or their carers may be entitled to benefits to help with the additional costs of living with an IMD.

There are a number of benefits and tax credits to which you may be entitled. Some benefits can be paid because your child is disabled while others may be paid to you for other reasons. For example, you may be entitled to Disability Living Allowance (DLA) for your child’s additional needs as well as Carer’s Allowance as their carer. Depending on your income and certain other factors, you may also be able to claim benefits, such as Income Support, Child Tax Credit and Housing Benefit.

Applying for benefits

When applying for benefits we suggest that you:
– Prepare a diary of a typical week showing a complete breakdown of care;
– Ask your metabolic consultant for a letter of support to accompany your claim;
– We may be able to help by providing a letter of support regarding your condition if appropriate. Please contact us for more information.

We will be adding more information to this page over the coming months. Please click on the titles below to see further details about each different benefit and the application process.

Universal Credit

Personal Independence Payment (PIP)

Cold Weather Payments

Appealing a Benefit

For further information about benefits, obtaining a supporting letter about your Inherited Metabolic Disorder for your claim, or appealing a benefit, please contact the Core Services team on 0845 241 2173 or