Why are people with bipolar disorder waiting years for a diagnosis?
According to Bipolar UK, as many as 1 in 50 people have bipolar disorder, making it one of the most common long-term health conditions in the UK. For people living with bipolar, the condition touches every part of their lives, affecting their relationships, employment prospects and physical health, as well as increasing the risk of suicide by up to 20 times. With the right treatment, the condition can often be successfully managed, but one of the biggest challenges of bipolar disorder is simply getting the correct diagnosis in the first place.
Bipolar remains one of the most commonly misdiagnosed mental health disorders. Research from Bipolar UK shows that it takes an average of 9 years for someone with bipolar to be correctly diagnosed – some studies have put that figure as high as 14 years – during which time they will be misdiagnosed an average of 3.5 times. That’s a long time to spend without receiving treatment that could relieve symptoms or, more seriously, being prescribed the wrong medication, that can actually make symptoms worse.
Why is bipolar so difficult to diagnose?
There’s no single cause of this high rate of misdiagnosis – rather, a combination of different factors. Assessing clinicians often don’t have access to all the information they need to reach the right conclusions and a disconnection between healthcare services means some people can fall through the gaps.
The nature of the condition itself plays a part, with intermittent periods of mania and depression that vary in length and severity. Many people with bipolar initially seek help following a depressive episode and are consequently diagnosed with unipolar depression. Meanwhile, manic episodes, viewed in isolation, can be misdiagnosed as ADHD, while those who experience milder hypomanic episodes may not report them as a problem at all. It can be very difficult to uncover this complex web of overlapping symptoms to determine the root cause.
For complex diagnoses such as bipolar, patients generally need to be assessed by a psychiatrist within secondary care services, however, it can be very difficult for patients to access secondary care, with many waiting months for an appointment or as mentioned, their symptoms being interpreted incorrectly and misdiagnosed in primary care.
A GP has, on average, nine minutes to see a patient and determine the right care pathway or treatment plan, making it very difficult – if not impossible – to gain a complete picture of the individual. Without this bigger picture, linking together different episodes and understanding the patient’s lived experience over time, it may be years before a diagnosis is reached.
Although every patient’s story is different, Phil’s long journey to diagnosis gives some insight into the experience of many people living with bipolar.
“In 1969, I was in the last year of a degree course at Birmingham University and I was struggling,” he says. “I stopped going to lectures, became lethargic, stayed in bed during the day, stopped looking after myself and generally lost hope and belief in myself.”
Eventually, Phil was persuaded to see a doctor. He was diagnosed with unipolar depression and prescribed antidepressants.
“I took a year off and, on medical advice, stopped taking the antidepressants in due course. During that year off, I was fine. I got married, went back to Uni and managed to complete the final year of my course. We moved to Leicester in 1973, where I started a social work training course with a view to becoming a trained probation officer.
“After a few months I completely ‘lost the plot’, becoming irrational, not sleeping. I told the local church they could have my car and, at one point, I was standing shouting in the library and tearing up a book. I tried to read poetry to my tutor instead of turning in work. I threw away my asthma medication because I thought I was healed. That led to six months in a locked ward at a psychiatric hospital on major tranquilisers. It was seen as a ‘one-off’ psychosis and I received no treatment other than drugs.”
According to Phil, there were further missed opportunities that might have brought him to the right diagnosis much sooner. “I took a Civil Service post that required me to have a medical from one of their doctors. He asked me whether I had considered the possibility of manic depression, as it was called in those days. I hadn’t and, to be honest, I didn’t really know what to do with that information.
“I was well for about 10 years but then began to have similar psychotic episodes almost yearly – about five in total. Each time I was taken to hospital against my will, treated only with major tranquilisers and told it was another ‘one-off’ episode. Finally, in 1991 I went to a new psychiatrist who diagnosed me as bipolar and started me on lithium treatment. I have not looked back since then and remained well.
“It was over 20 years from my first depressive episode to receiving the correct diagnosis. During that time I had to forsake two career choices and had some spells of unemployment. It has taken a toll on my self-esteem but more importantly caused considerable stress to my wife and to my sons, who came along in the early 1980s. We also missed out on a social life as I felt awkward and stressed when meeting people.”
For Phil, getting his diagnosis was about more than just accessing the right treatment. “Having received the correct diagnosis, I could look up information about the condition, adopt suitable strategies to help myself and help my family to understand what was going on. I also started a local group of the Manic Depression Fellowship (now Bipolar UK) and felt able to share my experience with others.”
How can we get better at diagnosing bipolar?
When it comes to reversing the trend towards misdiagnosis of bipolar disorder, there’s no easy fix. Considering the limited resources within both primary and secondary care, clinicians are already working at capacity. GPs have limited time to carry out assessments and there simply are not enough psychiatrists to provide specialist support for every person.
However, there are improvements that can be made with the resources that are available. Technology can allow us to implement more efficient and streamlined methods of assessment in primary care, that look not just at the immediate symptoms but at the bigger picture. Factors such as lifestyle, symptom presentation and psychiatric history can be explored earlier in the process, meaning that the time it takes people like Phil to receive the correct diagnosis could be drastically reduced.
Similarly, improving diagnoses of this nature requires a more collaborative approach across different healthcare services, so that relevant information about the patient is readily available. This would give clinicians the opportunity to draw on others’ expertise and the best chance of providing the right help.
Co-founded by Professor Sabine Bahn, a practicing psychiatrist and head of the Cambridge Centre for Neuropsychiatric Research, Pysomics is developing technology to radically improve the way mental health conditions are assessed and triaged.