18th February 2019

Migraine sufferers missing out on support for care

Only 2% of those who were cared for during an attack received government support

Many people with migraine are missing out on government support for their care needs.

We are regularly contacted by people with migraine to find out what government support is available to help them pay for carers. We ran a survey of over one thousand and four hundred (1,414) people with migraine which found that only 2% of those who received care during an attack received support from the government. This is despite 4% of people reporting that they receive between 24 to 48 hours of care a week, and 5% of people receiving more than 48 hours of care a week.

In addition to people with migraine who received high levels of care not getting government support, we believe that the nature of the condition means that many people with migraine who required care but in a more episodic way were not receiving government support. This is despite migraine having a significant impact on their ability to look after themselves and carry out normal day to day tasks. Migraine is ranked globally as the seventh most disabling disease among all diseases (responsible for 2.9% of all years of life lost to disability) and the leading cause of disability among all neurological disorders.

Lack of support for episodic care

People with migraine are falling through the cracks of a system that is set up to support people who receive care in a more structured and consistent way. Whereas due to the unpredictable nature of the condition where a migraine can occur unexpectedly and where people can need care for one attack but not another, the requirement for care is itself unpredictable and inconsistent.

This is reflected in the survey’s findings where 15% of people said that they always need care during an attack, while 69% said that they sometimes needed care.

Asked who was providing the care, the survey showed a mixture of support from family members. The most common person to care for someone with a migraine was partner or spouse, with 77% of people reporting that this is how they have received care, while 20% of people had received care from their parent. Caring was also being provided by migraine sufferer’s children, with 12% reporting that they had received care from the child who was under the age of 18, and 10% reporting that they had received care from an adult child.

“Despite being a serious neurological condition, migraine is often not taken seriously and just dismissed as ‘a bad headache’. Unfortunately, despite people often requiring care during an attack, the caring needs of someone with migraine are not taken seriously either. It is therefore crucial that people with migraine and their carers check if they are entitled to support, and receive it if they are.” Wendy Thomas, Chief Executive of The Migraine Trust

Seek help for care needs

The Migraine Trust is recommending that anyone with migraine who has care needs as a result of their condition to check if they are eligible for Personal Independence Payment (PIP). People can start their PIP claim by ringing 0800 917 2222 (textphone 0800 917 7777), or in Northern Ireland 0800 012 1573 (textphone 0800 012 1574). Alternatively, a paper claim-form can be requested by writing to: Personal Independence Payment New Claims, Post Handling Site B, Wolverhampton, WV99 1AH (or in Northern Ireland: Personal Independence Payment Centre, Castle Court, Royal Avenue, Belfast BT1 1HR).