The Migraine Truth: tackling barriers to access to care
Elena Ruiz de la Torre, Executive Director of the European Migraine and Headache Alliance, tells us about the many challenges people with migraine face in getting a proper diagnosis and access to appropriate care.
People with migraine face many challenges in getting a proper diagnosis and access to appropriate care. Their unmet needs are often not fully recognised and while some European countries have effective policies in place to support a smooth journey through migraine diagnosis to treatment, this is not the case everywhere. Elena Ruiz de la Torre, Executive Director of the European Migraine and Headache Alliance (EMHA) brings to light the impact of such disparities in migraine policy across Europe, through the results of their recent Access to Care Survey which analysed responses from over 3,300 people with migraine from 12 European countries.
“A good diagnosis won’t be possible without the work of a specialist”
It is understood that the key to efficient management of migraine begins with a correct diagnosis, leading to the implementation of an effective treatment strategy. Many people living with migraine, however, do not have a smooth journey to diagnosis and therefore
struggle to access an appropriate treatment plan.[i]
I found it disheartening that a third of respondents to the EMHA Access to Care Survey had attended more than four appointments with different specialists before receiving a migraine diagnosis and that a quarter reported that they did not receive any follow up communication from their healthcare professional after their first diagnosis.
Overall, more than two-thirds of respondents declared that they do not attend a specialist migraine centre, but our survey showed significant differences across Europe. In Italy, over two thirds of migraine patients are receiving care in a specialist centre but in France and Ireland, it is approximately one third , and in Finland it drops to less than one in ten patients.
The respondents also reported the detrimental impact that migraine attacks have upon their daily activities and indicated that the top three needs to improve their quality of life were: experiencing fewer migraine days per month; receiving effective treatment; and the impact of
migraine being more widely recognised in general society. When asked about what would make a positive difference to the management of their condition, overall respondents indicated that having greater access to migraine specialist centres specialists would improve their situation.
Speaking from personal experience, I know the days you have a migraine attack you feel useless and desperate because your colleagues, family and friends are expecting you, and we let people down. It’s a very frustrating feeling, making us feel guilty for something that is
out of our control. I also understand that people with this condition experience sustained anxiety in between attacks as we nervously anticipate the onset of the next debilitating episode. This is one of the most underappreciated aspects of the condition.
With effective disease management, within an organised care pathway and with access to specialised headache services, the improvement to the lives of those with migraine would be immeasurable. More work needs to be done to reduce the personal, emotional, and societal impact of migraine. EU and global programmes can support actions to tackle migraine and we encourage all Member States to:
Raise awareness to remove stigma and discrimination surrounding migraine
Promote migraine prevention and treatment to improve patients’ quality of life
Improve knowledge amongst people with migraine, policy makers and the general public regarding the need for greater access to specialised healthcare facilities.
Every stage of migraine – from diagnosis to treatment and prevention – should be considered and reflected in current and future healthcare policies. It is vital that these policy frameworks create a clear and smooth care pathway, enabling patients to seek out appropriate medical attention within specialised care centres.
[i] Patel, N., Barnhart,
R., Konkol, P., Varda, J., Nelson, R. and Smith, T., 2020. Treatment of migraine: a review of disease burden and an update on the therapeutic landscape for pharmacists. Drugs & Therapy Perspectives, 37(2), pp.75-86. https://link.springer.com/article/10.1007/s40267-020-00801-2
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