Press release
People with migraine disease experience similar barriers to health care as patients with other conditions, but these are compounded by stigma and lack of access to modern treatments. These were findings of research published in the Journal of Primary Health Care, based on a survey of 530 people with migraine from Migraine Foundation Aotearoa New Zealand.
Half of survey respondents reported being unable to see a health professional for migraine, most commonly a neurologist (49%) but also general practitioners (28%), other specialists (10%) and complementary health services (10%). The most common reasons for being unable to see a health professional were being unable to get or declined an appointment, long waiting times (particularly for primary care) and the cost.
“Most people with migraine disease can be managed in primary care,” says Dr Fiona Imlach, senior researcher at the University of Otago’s Department of Public Health and co-founder of the Migraine Foundation. “But people can’t always see their GP when they need to. Then there are those with chronic and refractory migraine who would really benefit from a specialist’s review, especially when their GP has tried all the usual treatments and they’re not working. We hear from people like this all the time, who are unable to get a neurologist appointment through the public health system. Their only option is to go private, if they can afford it.”
As well as difficulty in accessing health care, 42% of respondents reported feeling judged or misunderstood by a health professional because of migraine at least some of the time.
“Migraine stigma is real,” says Dr Imlach. “Because the diagnosis of migraine is based on symptoms reported by the patient, not something like a blood test or a scan, people don’t always feel like their levels of pain and disability are taken seriously or believed, or they’re told they have a mental health issue. They end up not getting adequate treatment or even a proper diagnosis.”
This happened to survey respondent Amy Clarke, who is using a pseudonym. Now in her 30s, her migraine disease is well managed but this was not always the case. Despite multiple visits to her GP as a young adult with severe headache and visual disturbances typical of migraine aura, she was not diagnosed with migraine until seeing a different doctor, eight years after her symptoms began. She was not prescribed migraine-specific medication until a protracted attack landed her in the emergency department.
Clarke describes these experiences as being “fobbed off” and made to feel like “a dramatic teenage girl” who was “sensitive to pain” and not deserving of migraine-specific medication. Other female survey respondents also felt that they were being treated sub-optimally because of their gender. One reported: “I took a male friend to A&E with a migraine, they took x-rays and gave him pain meds. Every woman I’ve taken has been given a [prescription] for paracetamol and sent on their way home to discuss with GP.”
Dr Imlach says many diseases that are more common in women than men, such as migraine, are affected by gender bias. She notes that the gendered experience of migraine stigma has a long history and migraine-related stigma is a worldwide issue. “People with migraine report stigma in two main areas – one is that other people minimise the burden and impact of the disease, and the second is other people think ‘migraine’ is used as an excuse to avoid doing things. These attitudes reflect a misconception of migraine, which is a complex neurological condition that causes significant disability and unpredictable attacks that are completely outside of a person’s control.”
This misunderstanding extends to health professionals. Only 36% of survey respondents thought their GP’s knowledge of migraine and treatment options was excellent or very good and some thought health professionals did not always understand that a migraine attack is “more than a headache”. Awareness of new treatment options was limited and treatment plans were not always in place or communicated clearly.
Clarke is disappointed her GP prescribed an oral contraceptive pill without warning her of a higher risk of blood clots and stroke for people with migraine with aura, especially those who smoke, and that these pills could exacerbate her migraine attacks. She was also not told how to take non-steroidal inflammatory drugs safely, which led to gastrointestinal issues. But her main concerns are over how long it can take to see a GP and over-worked GPs who are “under the pump” and don’t have time to review patients thoroughly and follow them up.
Dr Imlach agrees. “There are a range of things that could be done to improve health care for people with migraine,” she says. “Firstly, we need to invest more in the health system to deal with the issues of waiting times, poor access to primary care and the inability to get specialist review that are affecting thousands of patients. Specifically for migraine, we need to make sure there is up-to-date, comprehensive and standardised training about migraine for all health professionals involved in the management of migraine patients. We need to have better communication about treatment plans between primary and secondary care and give patients all the information and tools they need to manage their condition effectively. This includes access to a wider range of migraine medications, which are not yet available or funded in New Zealand.”
The research paper ‘Patient perceptions of barriers to effective migraine management in Aotearoa New Zealand’ is published in the Journal of Primary Health Care, which is the journal of the Royal New Zealand College of General Practitioners.
Find out more about the Migraine in Aotearoa New Zealand 2022 survey
