How can we support the 10 million people who suffer from migraine?
In the latest in our new series on improving care for people with long-term health conditions, Dods Impact and AbbVie explore how fixing the ‘broken care pathway’ can help support the 10 million people in the UK who suffer from migraines
Migraine is a severe and painful long-term health condition that 1 in 7 of the UK population lives with every single day.
The condition is hugely debilitating and impacts on the quality of life of millions of Britons. There is also a significant economic cost, with migraine-related absenteeism costing the UK economy a staggering £4.4 billion each year.
Yet, despite migraine being one of the biggest causes of disability in the UK, the scale of the health challenge associated with the condition is often poorly understood by both healthcare providers and the wider public alike.
As we emerge from the pandemic, the migraine community is now calling for new approaches to increase awareness of the impacts of migraine and to develop new ways to care for those living with the condition.
“Migraine is a common and complex condition,” Rob Music from The Migraine Trust tells us. “It affects 10 million people – their ability to work, their mental health, and their relationships. It has been dismissed for far too long.”
As someone who experiences migraine himself, Labour MP Wayne David has spoken regularly about the challenges that the condition brings. He believes that a shift in understanding and awareness is key to improving care for patients.
“Migraines affect around 10 million people in different ways,” he tells us. “But what is clear is that they need to be taken far more seriously than is often the case. Migraines are responsible for the loss of approximately 43 million workdays a year and can ruin a person’s life.”
Rob Music agrees that awareness and understanding are vital, both within primary care and across the wider population, an issue highlighted in a recent report by The Migraine Trust. For him, the key starting point is ensuring that the condition is more widely understood by both primary care providers and the wider public. “How do you get the uninterested interested?” he asks. “It needs investment in staff, infrastructure, pathways, and education.”
The pandemic has worsened the experience of migraine for very many people
“Migraine care is often a broken pathway,” says Todd Manning from biopharmaceutical company AbbVie. “Migraine is usually perfectly manageable in primary care settings, but a lack of awareness, skills, and confidence means that providers often refer patients to outpatient neurology services for unnecessary investigations and treatment. This creates a bottleneck in the system and means that the complex cases that would most benefit from specialist support face lengthy delays.”
These delays have been worsened by the recent pandemic which caused further disruption to the care of those living with migraine, particularly when seeking specialist support for pain management.
A recent report commissioned and funded by AbbVie and carried out by health research consultancy Carnell Farrar has now highlighted the wider impacts of this disrupted care for migraine patients. It found that during the first Covid wave, referrals to neurology fell to around 18% of pre-pandemic levels whilst outpatient appointments plummeted by almost 60%. This meant that for many people living with this debilitating condition, access to support was not in place.
Wayne David MP is concerned that for many with the condition that downturn in support also coincided with an increased need.
“The pandemic has worsened the experience of migraine for very many people,” he tells us. “Many migraines are stress-related and Covid has certainly resulted in increased stress levels for many people.”
Rob Music from the Migraine Trust shares David’s concerns about the impact of Covid on the mental health of migraine patients. He does not believe this is always fully appreciated by policymakers.
“People just haven’t been able to access support,” he tells us. “Over the last few months, we have seen more calls to our helpline. These calls have been longer and more emotional. It is clear that mental health has got much worse. The concern now is that because of the wider challenges that the NHS faces migraine will slip even further down the agenda.”
That is why, as we now emerge from the pandemic, experts are calling for new approaches to symptom identification to help repair the broken pathway that currently prevents migraine sufferers from accessing the support they need.
Central to this approach is primary care providers being able to provide patients with the tools and treatments they need to manage their condition in home and community settings and an increase in specialist headache clinics. Not only will this benefit those who live with the condition, it will also benefit the NHS as a whole - resulting in an estimated 10,000 fewer unplanned admissions and freeing up 6000 bed days each year.
Manning believes that this would signal a step-change in patient care. “Building better awareness will lead to quicker and more accurate diagnosis for patients and will allow effective strategies to be put in place to manage the condition,” he tells us. “Following the disruption of Covid, it is time to step back and really assess the way that we support people with this condition.”
Rob Music also believes that the current “chaotic pathway” is in urgent need of repair. “The system is broken and it needs fixing urgently,” he says. “But if we get the journey right things can massively improve, not just for patients but for the NHS as a whole.”
How Community Pathways Helped Patients In Oxfordshire
In Oxfordshire, headaches account for 1 in 3 referrals to neurology outpatients departments.
However, when they analysed the numbers, Oxfordshire clinicians realised that only 34% of these referrals actually required expensive secondary care support in a hospital setting.
The volume of unnecessary referrals placed pressure on the outpatients department and caused delays in access for patients with other neurological conditions.
The challenge they set themselves was, how can the other 66% of patients be better supported in community settings?
The solution they came up with was a Community Headache Clinic. This was located at a community location easier for patients to access and closer to home.
This new pathway has been highly effective in supporting patients without the need for outpatient appointments. In the first three months, 89% of all headache referrals were directed away from neurology outpatients departments.
This slashed costs for the NHS, but it also led to much better outcomes for patients. For 79% of patients using the Community Headache service this was the first time they had ever been diagnosed.
Each patient leaves their consultation with a personalised care plan. This tells them how best to manage their headache at home. An initial evaluation of the service showed very high levels of patient satisfaction. Prior to their appointment, only 32% of patients felt able to manage their headache. This rose to 100% after the clinic appointment.
The project shows how new community-based models can play a critical role in delivering better outcomes for migraine patients and make best use of NHS capacity.
This case study is not connected to AbbVie in any way
This article and the Carnall Farrar report has been commissioned and funded by AbbVie. This article is intended for the general public.
Date of Preparation: July 2022 Job No: UK-ABBV-220312
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