Benefits advice - The Lily Foundation
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Benefits advice

As part of our mission to support everyone affected by mitochondrial disease, we believe that should cover financial help too.

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Having a diagnosis of mitochondrial disease doesn’t necessarily mean that all patients will develop health complications from the disease. Many patients with a diagnosis could remain free of symptoms during their life.

However, living with mitochondrial disease can bring financial challenges, whether due to increased care costs, reduced ability to work or the need for specialist equipment and support. If you or a loved one has mitochondrial disease, you may be entitled to financial support from the UK government to help with your living costs.

We know that navigating the benefits system can feel overwhelming, but there are organisations that can help. Below, you’ll find useful information and links to trusted sources of advice.

What benefits might you be entitled to?

There are several types of financial support available, depending on your circumstances:

  • Personal Independence Payment (PIP) – for adults under State Pension age who need help with daily living or mobility.
  • Disability Living Allowance (DLA) for Children – support for children under 16 with mobility or care needs.
  • Attendance Allowance (AA) – for those over State Pension age who need help with daily activities.
  • Carer’s Allowance (CA) – support for those caring for someone with a disability for at least 35 hours a week.
  • Universal Credit (UC) & Employment and Support Allowance (ESA) – for those unable to work due to illness or disability.
  • Statutory Sick Pay (SSP) – for employees unable to work due to illness.

Each benefit has specific eligibility criteria and application processes, so it’s important to get the right advice before applying.

Where to get benefits advice

Citizens Advice

Citizens Advice provides free, confidential support on benefits, including how to apply and what to do if your claim is rejected. You can find your local branch or call their national helpline:

England: 0800 144 8848
Scotland: 0800 028 1456
Wales: 0800 702 2020

Turn2Us

Turn2Us has an easy-to-use Benefits Calculator that helps you check what financial support you may be eligible for. They also provide grants for people in financial hardship.

Scope’s Disability Benefits Service

Scope offers tailored advice on disability benefits, including support with appeals and challenging decisions.

Contact – Support for Families with Disabled Children

If you’re a parent of a child with mitochondrial disease, Contact provides guidance on claiming DLA and other financial support for families.

Help with energy bills and daily costs

People with mitochondrial disease may face higher energy costs due to the need for heating, specialist medical equipment or mobility aids. You may be eligible for:

  • Warm Home Discount – a £150 rebate on your electricity bill if you’re on a low income.
  • Cold Weather Payment – extra payments during very cold weather if you receive certain benefits.
  • Local Council Support Schemes – some councils offer emergency help with essential household costs.

Check eligibility and apply via GOV.UK.

What if my benefits application is rejected?

If your application is denied, don’t give up – many decisions are overturned on appeal. Organisations like Citizens Advice, Scope and Turn2Us can help you challenge a decision and prepare for an appeal.

More support from The Lily Foundation

At The Lily Foundation, we understand the challenges of living with mitochondrial disease. We’re here to connect families with trusted resources and a supportive community.

Visit our mitochondrial disease support page to find lots more information on living with mito, connecting with others and accessing practical support.

Contact us