14th March 2017

Services for migraine patients falling short

New report published on neurology patient experience

Neurological Alliance logoToday the Neurological Alliance has published the results of their survey on patient experience in England.  The report, titled ‘Falling short’, reveals that services to diagnose, treat and provide on-going care have seriously deteriorated since 2014.  Across the spectrum of neurological disorders patients are being failed.

Over 1,300 of you shared your experience of living with, and accessing support for migraine with the Alliance.

The results evidence the debilitating impact of the condition:

  • The majority, 64%, of people with migraine are restricted in their activities frequently, most or all of the time
  • 73.2% of people with migraine say their condition causes them severe or extreme pain or discomfort
  • 50% of people suffered from other health conditions as well as migraine.

Over half of patients are more satisfied than unsatisfied with the way their migraine diagnosis was first communicated to them.  However, the survey reveals that health professionals should do more to provide sources of additional support and information when diagnosing.

  • 76% of people were dissatisfied with the sources of emotional support (such as patient support group or counselling) provided by their health professionals, that they received when diagnosed with migraine
  • 67% were dissatisfied with sources of information they received from their health professionals, such as signposting to charities, when diagnosed with migraine
  • 32% of people with migraine believe their diagnosis should have been communicated more appropriately.

The results also demonstrate the difficulties people can have in accessing appropriate health services for their migraine.

  • Only 30% of people with migraine described the health services for their condition as ‘good’ or ‘excellent’
  • As few as 17% of people who received specialist neurological care had access to a headache nurse
  • Only 14% of people who received specialist neurological care were offered a care plan for their migraine*
  • 19% of migraine patients had attended a hospital accident and emergency department at least once as a result of their condition in the past two years.

Abstract brain imageThese experiences are echoed across all neurological conditions.

The Migraine Trust, the Neurological Alliance, and its members, are now calling for neurology to be prioritised within the NHS and for the new opportunities to improve the system to be seized and implemented.

*A care plan is an agreement between you and your health professional(s) to help you manage your health day-to-day. It is usually a written document you take with you to appointments and keep at home.

"It is unacceptable that every aspect of patient experience for people living with migraine and other neurological conditions has deteriorated over the past two years. It is particularly concerning to see that almost 20% of respondents with migraine have attended a hospital accident and emergency department as a result of their condition. With the right services and support in place this is almost entirely avoidable. The Department of Health and NHS England must act now to provide the necessary commitments to improve the care of people living with these debilitating conditions." Arlene Wilkie, Chief Executive, The Migraine Trust
"The NHS crisis hitting the headlines this year has been happening in neurology for years. We want to use what we are learning from the survey to improve the experience of neurology patients and we are challenging the whole system to work together – along with the Neurological Alliance and its members – to ensure that by 2018 we are reporting a turnaround in patient experience." Sarah Vibert, Chief Executive, The Neurological Alliance



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