Scots suffering from severe mental illness die two decades earlier

“Statistically, I’m way beyond the time I should have died,” Graham Morgan tells me calmly, as we chat at a community centre in Dumbarton. “I am really conscious of that. I know that people like me die so much earlier than the rest of the population.”

By people like him, he means those who have a severe mental illness (SMI). Morgan has been diagnosed with paranoid schizophrenia, a condition he’s been living with for more than 40 years. As a result, his life expectancy is 15-20 years shorter than the average person.

Suicide is not the driver of that gap, as many might assume. A 2018 study of primary care data, published in the journal Schizophrenia Research, found fewer than five per cent of premature deaths were due to suicide or self-harm. Circulatory diseases, respiratory diseases and cancers made up over 60 per cent of them.

People with SMIs frequently have poor physical health, which puts them at risk of developing chronic conditions such as obesity, diabetes and COPD. They are also more likely to engage in high-risk behaviours such as substance misuse. Analysis from the Royal College of Psychiatrists (RCPysch) estimates around two-thirds of early deaths of people with SMIs are due to preventable physical health conditions.

It is hard to treasure my body and my life

Morgan, who is in his early 60s, is acutely aware of the danger – yet he still struggles with maintaining good physical health. The antipsychotics he takes for his schizophrenia make him put on weight and, while he goes on regular walks with his dog, Dash, he finds it difficult to find the motivation for any more strenuous exercise. His diet, he says, is relatively healthy.

But he admits he drinks more than he should. “Sometimes I use alcohol not to think some of the thoughts I have. I find it easier if I’m not thinking, especially in the evening, which is a really bad way to use alcohol, but it’s what some of us do,” he says.

Due to his diagnosis, he is entitled to an annual health check with his community mental health team. But he has only gone to those in the past because “they hassled me to go in” – and he’s currently overdue getting his blood pressure checked.

“I know I should go along and get checked up, but I can’t make myself. I think there’s something more complicated than saying I’m just being lazy. There’s something about motivation.

“And also, my internal vision of myself is that I’m just horrendous and loathsome and not someone anyone wants to be near. To be honest, a lot of my life is thinking I should be dead, and I should either kill myself or someone should kill me. Luckily, I have the most wonderful family keeping me from doing that sort of thing. But it is hard to treasure my body and my life.”

^{Lithium is regularly used to prevent psychosis |  Alamy Stock Photo}

It’s something he admits to feeling guilty about. But when I ask him what the barriers are that stop him seeking help for physical ailments, he tells me he doesn’t “willingly seek help with my mental health” either.

Morgan is under a compulsory treatment order which, for him, means he’s legally obligated to attend an appointment every two weeks to get an injection. He’s previously spent time institutionalised after being sectioned, too. This is a double-edged sword, he says, because while he acknowledges these interventions have helped, they also impact on his ability to trust those trying to help.

“I have been sectioned by them a number of times. I know what it’s like to be running away from them and chased by them. I know what it’s like to be frogmarched back to a ward, or to be told if I don’t accept an injection, I would have that forcibly done to me. And that’s frightening… and it’s professionals who generally have the best of motives, who are the people who’ve done that to me. I know it’s saved my life, but it’s still traumatic. It still affects trust.”

While not everyone with a severe mental illness will have experienced these more extreme measures, Morgan’s point about trust is an important one. Too many people feel they have been let down by health professionals, with the Scottish Mental Illness Stigma Study finding 71 per cent of those with severe and enduring problems felt they had been unfairly denied help.

Maja Mitchell-Grigorjeva, impact and development manager at Bipolar Scotland, says many people have had encounters with doctors which have left them feeling judged, dismissed and misunderstood. “A lot of people do seem to still experience a degree of stigma and discrimination when talking to health professionals,” she says.

If people have had those negative reactions from health professionals in the past... that can also put them off seeking help and support

Bipolar Scotland has been running a survey this year on the topic of access to healthcare. Among the responses was one woman who suffered from endometriosis for years, but it was not picked up because of her bipolar diagnosis. “I eventually had a hysterectomy, and the surgeon said I had the worst case of undiagnosed endometriosis she had seen. I had all the classic symptoms for years but just wasn’t taken seriously,” she told the charity.

Another respondent said they were told by a neurologist that “most doctors won’t take you seriously now”.

Yet another said the long wait to get a doctor to review their medicine meant they became dependent on sugary energy drinks to cope with side effects, which may have played a role in them developing diabetes.

All these negative experiences add up, making people less likely to go to their doctor. Mitchell-Grigorjeva continues: “When you’re unwell, unfortunately it is common to neglect yourself. People say it’s more difficult to actually summon the energy to go to the doctor or to want to take care of yourself. The other thing about stigma and discrimination is that if people have had those negative reactions from health professionals in the past or that judgement that people experience, that can also put them off seeking help and support.”

^{Many people with SMIs have felt dismissed by health professionals | Alamy}

A separate but related inequality in access to healthcare is people with SMIs struggling to get to the right service. Some people report not being seen as a whole patient because of their mental illness.

One respondent to the Bipolar Scotland survey said: “The only health professional that can possibly look at me as a whole person is a GP and they do not want to touch psychiatrist-prescribed medication and treat you like there’s nothing they can do because it’s not their field.

“I have always felt pulled from pillar to post and I am constantly being told I have to ask someone else which can feel impossible for someone who struggles with their self-care in the first place.”

Elsewhere, the Mental Welfare Commission – the statutory body set up to safeguard the rights of people with mental illness – has highlighted issues with GP referrals to psychiatry services being rejected where a patient had a drug addiction, instead being redirected to addiction services even though the underlying cause of their addiction is mental illness.

We’re just not reaching out assertively enough

Mitchell-Grigorjeva says all of this “puts the onus on the person who’s not well to have to have the motivation, the patience, the perseverance” to advocate for their own healthcare. “And oftentimes people don’t. And so then they fall through the gaps.”

Abdul Albashir, a member of advocacy organisation Vox Scotland, describes a similar experience. He was diagnosed with borderline personality disorder in his early 20s and says there was little support to navigate the system. “There are different pathways, different scenarios, different support workers, different support providers – I’ve had to do my own research, I’ve had to figure out what there is and how to go about it, which I found extremely hard because I just get passed on from one person to another.”

Dr Jane Morris, chair of the RCPysch in Scotland, describes it as “almost a sense that if you’ve got a mental illness, that explains everything and that you no longer have the status of a human body that requires physical input as well”.

Resourcing is a huge part of the problem, she argues. “In the case of our very overworked GP colleagues, nobody is trying to exert stigma. But if you’re overworked and you have to prioritise and if there hasn’t been an expectation that you will provide health checks to people at highest risk or there is no resource for it, then it’s very hard for people to make that change and take on extra work, and often very uncongenial work.

“It’s very hard if somebody’s got a mental illness to get them to attend appointments under their own steam with reliability. You have to be either very tolerant or provide escorts or transport or something like that. We’re just not reaching out assertively enough.”

^{Dr Jane Morris describes early deaths as the 'sunken part of the iceberg' | Adobe Stock}

Meanwhile, awareness of what patients are entitled to is low. Five in six people are not aware they should be offered an annual health check, according to the Bipolar Scotland survey. Further, a quarter of those who take medication for their illness said they never had a follow-up appointment to review that medication.

This latter issue is one RCPysch has raised as a direct consequence of dwindling numbers of the psychiatry workforce. Morris explains: “One of the problems of being a reduced workforce and less continuity of care is that we would all very much like to monitor our patients extremely closely when they’re on drugs.

“What tends to happen is that either we can’t monitor them closely enough, and sometimes there are unwanted side effects, or other times they stop taking them because they fear those.”

However, she says the main driver of health inequalities among people with SMIs is not inaccessible acute care, but lifestyle choices. She warns against seeing this purely as personal responsibility. Living with a severe mental illness “robs you of the energy and the motivation to prioritise” making the healthier choices we are all told to make.

“It’s not the case that people are abusing themselves,” Morris says. “It’s the case that they are not able to resist the environmental and commercial pressures to live an unhealthy life and the fact is, most of us have to use quite a lot of our intelligence and energy to oppose all the temptations and appetites and laziness that modern life imposes upon us.”

The shorter life expectancy and the early deaths are completely hidden

And this issue goes beyond the confines of the medical setting. While she welcomes the idea of social prescribing, she says it is “not actually supported” in terms of delivery and “doesn’t necessarily reach the people who most need it”.

She argues there is a need for ringfenced cash to provide better holistic care for patients with SMIs. She also backs creating a “secure and reliable database where people would have their names, with their consent and agreement, so that they could be not only called for monitoring but supported to the monitoring”.

And importantly, it’s an issue that needs to be brought into the light. Morris adds: “A lot of people are deeply shocked [by the life expectancy gap] or they jump to the conclusion that it’s because of suicide. Everybody is very big on suicide prevention, but in some ways, this is even more shocking. I mean, it always shocks me.

“Suicide is always regarded as the point at which you panic and invest. Actually, people who don’t take their own lives but are the sunken part of that iceberg have a terrible time and awful suffering. The shorter life expectancy and the early deaths are completely hidden.”