Patients with persistent facial pain are costing the economy more than £3,000 each per year, new research has revealed.
Experts at Newcastle University, UK, say introducing an electronic referral system to speed up diagnosis and treatment is likely to improve quality of life and save money.
The team has assessed the hidden costs of people suffering from long-term face and mouth pain that wasn't caused by toothache.
Findings, published today in the Journal of Dental Research, show patients' out-of-pocket costs are more than £650 a year, including prescription charges and travel expenses to and from appointments.
Meanwhile, costs to employers can be almost £2,500 every 12 months, due to aspects such as absenteeism and workers' loss of productivity as a result of dealing with pain.
This research adds weight to growing evidence that there is a need to screen patients with a Graded Chronic Pain Scale (GCPS) to ensure those most severely affected receive specialist care quickly.
A previous study, by the same team at Newcastle University, showed that a well-established graded pain scale could help reduce costs by providing a better structured system of care.
Justin Durham, Professor of Orofacial Pain and Deputy Dean of Clinical Medicine, at Newcastle University, led the two-year study which was funded by the National Institute for Health Research.
He said: "Our research shows that people have to go around the proverbial 'mulberry bush', visiting lots of different healthcare professionals to even get close to obtaining a diagnosis never mind beginning treatment for their condition.
"A better and more defined care pathway would improve care for those with persistent facial pain and help reduce their costs and those to the economy."
It is estimated that 7% of the population have Persistent Orofacial Pain (POFP), including temporomandibular disorders, phantom tooth pain, burning mouth syndrome, trigeminal neuralgia and atypical facial pain.
This research has revealed how patients attend a large number of appointments with different healthcare professionals but fail to obtain effective diagnosis or treatment plan quickly.
Professor Durham added: "Persistent facial pain is like having toothache every day of the week and, therefore, understandably has a profound and debilitating impact on people's lives, and our research has highlighted the hidden costs of this condition."
Experts asked 200 patients suffering long-term face and or mouth pain to complete questionnaires every six months for two years to assess how individuals used the NHS for their pain.
The team collected the costs of the care patients received, such as what the NHS paid to provide medication, surgery or other treatments, how much patients paid out of their own pockets and how their condition affected their ability to work.
Within a six month period, participants reported an average of nine healthcare appointments, and those employed reported missing almost two days off work. This absenteeism equates to an average employer cost of £174 per person per six-months.
While the findings suggest that most study participants were unlikely to have a large number of days off work because of their pain, they did report experiencing pain while working for nearly 35 days in a six-month period, during which they noted a decrease in their productivity whilst at work that could cost employers more than £1,000.
Professor Durham said: "We're calling for the introduction of an electronic referral system which uses a Graded Chronic Pain Scale—a simple seven item questionnaire.
"This scale would be a reliable way to determine who to fast-track to specialists and who should begin care immediately at their dentists or GP, meaning direct referrals would be made electronically to the best service local to the patient rather than relying on healthcare professionals' knowledge of who manages persistent facial pain in their locality."
Further research is expected to focus on how care pathways can be designed to better meet the needs of patients.
In partnership with the British Dental Association, the Newcastle University team is helping dentists and GPs manage persistent facial pain by setting up study days for next year.
Peter Dyer, Chair of the British Dental Association's Central Committee for Hospital Dental Staff, said: "Dentists working in hospitals will have seen patients who have failed to get priority, some on the verge of suicide in the face of unmanageable pain.
"This important research is a timely reminder that facial pain carries a huge personal and financial cost, and patients need not face barriers securing care.
"When so many people have been laid low by this condition GPs and high street dentists need a clear pathway to ensure patients can get the right treatment, when they need it."
Father-of-two Joe Buckham's life was turned upside down when he began to get severe facial pain a decade ago.
The extraction of a wisdom tooth left the former school teacher in agony as he suffered a fractured jaw during the procedure and a subsequent bone infection.
Mr Buckham was pushed from pillar to post as healthcare professionals struggled to identify the problem despite extensive tests, scans and investigations.
He spent a lot of money on hospital trips, including return train fares to a specialist in Oldham up to eight times, and private treatment, such as acupuncture and sports massage therapy.
It was not until he was referred to Professor Justin Durham, an Honorary Consultant Oral Surgeon at Newcastle upon Tyne Hospitals NHS Foundation Trust, that his problem was unearthed.
The 52-year-old has received treatment at Newcastle Hospitals' orofacial pain referral service and is on medication to help him deal with the pain.
The foster carer, of Rowlands Gill, Gateshead, said: "I believe had I been given the correct treatment quicker than I was, then I would have continued to work as a teacher.
"Sadly I had to retire because I couldn't do the job due to the seriousness of the pain—even things such as heat and antibiotics make it much worse.
"The pain I get in my face is severe and it can be very debilitating, sometimes it's so bad I just want to lie in a darkened room.
"Persistent facial pain is a hidden condition as no-one can see the problem and people don't understand it's so serious that it can ruin lives and you're stuck with it forever.
"The specialist service in Newcastle is fantastic and the research being done into facial pain is very much welcomed to help raise awareness of the condition.
"I feel that if medical healthcare professionals were able to use a Graded Chronic Pain Scale it would help ensure patients like me got the best treatment as soon as possible."
Explore further: Experts call for better services for patients with facial pain
M. Breckons et al, DEEP Study: Indirect and Out-of-pocket Costs of Persistent Orofacial Pain, Journal of Dental Research (2018). DOI: 10.1177/0022034518773310