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.

We understand it can be complicated to negotiate the benefits system, especially during a period where the system is undergoing widespread change.

Applying for benefits

When applying for disability 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 images below to see further details about each different benefit.

Personal Independence Payment (PIP)
Cold Weather Payments







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