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By Panorama team and Joseph Lee
BBC News

‘Toxic culture’ of abuse at mental health hospital revealed by BBC secret filming

By Panorama team and Joseph Lee
BBC News

• Published10 hours ago 28th September 2022

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BBC Panorama goes undercover to film humiliation, verbal abuse and bullying at a psychiatric unit.

Humiliated, abused and isolated for weeks – patients were put at risk due to a “toxic culture” at one of the UK’s biggest mental health hospitals, BBC Panorama can reveal.

An undercover reporter at the Edenfield Centre filmed staff using restraint inappropriately and patients enduring long seclusions in small, bare rooms.

Staff swore at patients and were seen slapping or pinching them on occasion.

Hospital bosses said they have taken immediate action to protect patients.

Greater Manchester Mental Health NHS Foundation Trust, which runs the medium secure unit, said it was taking the allegations “very seriously”.

A number of staff members have been suspended, and the trust said it was working with Greater Manchester Police, the independent healthcare regulator the Care Quality Commission, and NHS England “to ensure the safety of these services”.

Greater Manchester Police said it has opened a criminal investigation.

The BBC’s undercover reporter, Alan Haslam, spent three months as a support worker inside the Edenfield Centre in Prestwich, near Manchester.

With capacity for more than 150 patients, it is intended to care for people held under the Mental Health Act who are at serious risk of harming themselves or others, including some patients from the criminal justice system.

Whistleblowers had made allegations about poor staff behaviour and patient safety at the hospital.

Wearing a hidden camera, the reporter saw:

• Staff swearing at patients, taunting and mocking them in vulnerable situations – such as when they were undressing – and joking about their self-harm
• Patients being unnecessarily restrained – according to experts who reviewed the footage – as well as being slapped or pinched by staff on some occasions
• Some female staff acting in a sexualised way towards male patients
• 10 patients being held in small seclusion rooms – designed for short-term isolation to prevent immediate harm – for days, weeks or even months, with only brief breaks
• Patient observations, a crucial safety measure, being regularly missed and records falsified

Dr Cleo Van Velsen, a consultant psychiatrist, said the BBC’s footage showed a “toxic culture” among staff of “corruption, perversion, aggression, hostility, lack of boundaries”, which was undermining patient recovery.

Prof John Baker, an expert in mental health nursing at the University of Leeds, said: “It doesn’t feel safe. You’re quite clearly seeing toxic staff. There’s an awful lot of hostility towards patients across all of the wards, which is really concerning.”

Warning: This story contains repeated use of highly offensive language

Claire – not her real name – has a history of self-harm and was filmed being humiliated by a female support worker for needing help with going to the toilet.

The staff member complained to her face about “having to look at your arsehole where biohazard fucking waste comes out”.

In a sign that boundaries between patients and staff had broken down, on another occasion Claire sat on the lap of the same support worker, who said: “If you fart I will actually kill you.” The support worker then pulled aside the patient’s clothing and repeatedly slapped her bare skin.

A senior nurse was among those who watched, laughed and jeered as Claire was slapped. Most of the time nurses are in charge of the wards.

One nurse was filmed refusing to check on a crying patient named Olivia, who self-harms and has repeatedly tried to kill herself. The BBC is only identifying patients where they and their families have given consent.

Staff members laughed and joked that Olivia was “only crying” and “if she slit her throat you’d know it” because “she’d tell everybody about it”.

When talking to patients about their bodies, staff used demeaning language, often passing it off as a joke. But patients told the undercover reporter they felt bullied and dehumanised.

Olivia said staff had called her a “fat cunt”, before claiming they had been joking. The 22-year-old’s mother said Olivia had in the past stopped eating and drinking because she believed she was overweight. “It’s not funny, it’s not a joke,” Olivia said.

Another time, when Claire was due for a weekly injection, she hid her head under a blanket. Support workers and the senior nurse with them did not try to persuade her to comply, but instead were filmed dragging her by the wrist from a chair and into a room down the corridor.

One of the support workers mocked Claire again as staff held her down on a bed and exposed her body for the needle, saying “as if we’d choose to see your arse” and calling her a “cheeky bitch” as she protested.

After giving the injection, the staff locked Claire in the room, telling her they would keep her there for an hour as they laughed at her through the glass in the door – before letting her out a few moments later.

Dr Van Velsen said the members of staff acted “like a gang, not a group of health care professionals”. “It’s against any policy I’ve ever seen about restraint in doing this,” she said.

The code of practice for mental health workers says restraint and other “restrictive interventions” should only be used to take control of dangerous situations and stop anyone being hurt – not for punishment.

But the BBC filmed one patient being restrained after hospital managers said she had been shouting and verbally abusive.

Harley, a 23-year-old autistic woman who was at Edenfield due to self-harm, was sitting on the floor when at least eight members of staff picked her up and dragged her away, screaming.

Harley was being restrained to take her back into seclusion, where she had already spent more than two weeks.

At one point a nurse was filmed saying staff wanted her kept in seclusion because they “need a break from her”.

Reviewing footage of the incident, Dr Van Velsen said: “You cannot deprive somebody of their liberties because staff are fed up of her.”

Patients are only supposed to be confined to one room and isolated from others for short periods when there is an “immediate necessity” because they are likely to harm other people. It should not be used as a punishment or threat, or because of staff shortages, guidelines say.

Staff told the BBC’s undercover reporter that Alice (not her real name), a patient who had attacked staff, had been in seclusion for more than a year.

Guidelines for psychiatric hospitals say they can keep patients segregated for long periods to protect others on the wards. But the hospital must have the approval of a team of experts, consult the patient’s family where possible and give the patient additional space, including access to an outside area.

Edenfield’s seclusion rooms are small, with a bed, shower and toilet, all of which can be observed by staff from an adjoining room. Some have mould, peeling paint, a smell of sewage and windows that don’t open.

During one 30-minute break from seclusion, Alice asked for her blanket and teddy bears, comforts which she had been allowed before her isolation began. A support worker refused, saying: “You’re lucky you’ve not got a straw fucking bed in there. I’d give you a straw bed like cows have to sleep on.”

Undercover Hospital: Patients at Risk

A Panorama undercover investigation has found evidence that a secure NHS psychiatric hospital is failing to protect some of its vulnerable patients.

Watch on BBC iPlayer (UK Only) or on BBC One at 21:00 on Wednesday 28 September.

On another occasion, staff were filmed trying to give Alice her anti-psychotic medication Clozapine twice, because of an apparent breakdown in communication.

Asked what would happen if she had too much of the drug, a nurse said: “She’d probably just die.”

While the majority of patients filmed being mistreated by staff were women who had been sectioned and had self-harmed, some patients held in Edenfield have been convicted of violent crimes.

Experts said staff showed a worrying lack of boundaries even with these patients.

One patient, a man serving a life sentence for murder, was filmed writhing on the floor and on a bed as a female support worker grappled with him and tickled him.

Afterwards, she said: “You get away with murder here, don’t we? Can you imagine if I got caught by bosses?”

A different female support worker was filmed dancing up against another male patient.

“As well as making herself vulnerable she’s also increasing the vulnerability of the patients,” Dr Van Velsen said. “The one thing you should not do with patients is have a kind of sexualised relationship with them.”

Vulnerable female patients were also seen being mistreated by male staff. A male support worker taunted a woman with a history of self-harm as she undressed, saying he would turn his back because “I don’t want to be mentally scarred again”.

The support worker was also filmed pinching her twice, the second time while bending her arm backwards.

“It’s an assault,” said Dr Van Velsen when she viewed the footage.

Among the staff’s most important duties are patient observations, or “obs”. These are checks to ensure patients are safe, made every 15 minutes – or more frequently for patients at higher risk.

Records of the observations affect decisions about care and can show that patients were being properly looked after, in the event that they hurt themselves or anyone else.

Observations were frequently missed or carried out poorly. A nurse was filmed telling a support worker to falsify the records. “Here, sign some of these things, say you’ve done them,” he said.

He also asked the reporter to join in the falsification. “Want to pretend you were doing obs?” he asked.

Hospital employees complained of understaffing and burnout. Sometimes support workers were left on their own, with no nurse on the ward.

There was a shortage of nurses for adult secure wards on 58 occasions during one five-week period, according to records from the trust which runs Edenfield, seen by Panorama.

Prof Baker said there should never be a shift without a registered nurse on the ward, but added that recruitment problems in mental health care were “no excuse for the abuse we’ve been seeing in the footage”.

Information and support

If you are experiencing issues with mental health or self-harm, details of help and support are available here.

Seven members of staff were seen sleeping on shift by the BBC’s undercover reporter. One nurse went to sleep outside in the sun for about an hour while on duty, in full view of other staff and patients.

The BBC has reported the findings of its undercover investigation to hospital management and the Care Quality Commission.

Greater Manchester Mental Health Foundation Trust said senior doctors have undertaken clinical reviews of the patients affected and it had also commissioned an independent clinical review of services at the Edenfield Centre.

“We owe it to our patients, their families and carers, the public and our staff that these allegations are fully investigated to ensure we provide the best care, every day, for all the communities we serve,” the trust said.

The Care Quality Commission, which had previously rated the Edenfield centre as “good”, says that rating is “currently suspended” and it is “reviewing the information” provided by Panorama.

More on this story

memory

A Good Memory or a Bad One? One Brain Molecule Decides.

When the brain encodes memories as positive or negative, one molecule determines which way they will go.

Read Later

You’re on the vacation of a lifetime in Kenya, traversing the savanna on safari, with the tour guide pointing out elephants to your right and lions to your left. Years later, you walk into a florist’s shop in your hometown and smell something like the flowers on the jackalberry trees that dotted the landscape. When you close your eyes, the store disappears and you’re back in the Land Rover. Inhaling deeply, you smile at the happy memory.

Now let’s rewind. You’re on the vacation of a lifetime in Kenya, traversing the savanna on safari, with the tour guide pointing out elephants to your right and lions to your left. From the corner of your eye, you notice a rhino trailing the vehicle. Suddenly, it sprints toward you, and the tour guide is yelling to the driver to hit the gas. With your adrenaline spiking, you think, “This is how I am going to die.” Years later, when you walk into a florist’s shop, the sweet floral scent makes you shudder.

“Your brain is essentially associating the smell with positive or negative” feelings, said Hao Li, a postdoctoral researcher at the Salk Institute for Biological Studies in California. Those feelings aren’t just linked to the memory; they are part of it: The brain assigns an emotional “valence” to information as it encodes it, locking in experiences as good or bad memories.

And now we know how the brain does it. As Li and his team reported recently in Nature, the difference between memories that conjure up a smile and those that elicit a shudder is established by a small peptide molecule known as neurotensin. They found that as the brain judges new experiences in the moment, neurons adjust their release of neurotensin, and that shift sends the incoming information down different neural pathways to be encoded as either positive or negative memories.

To be able to question whether to approach or to avoid a stimulus or an object, you have to know whether the thing is good or bad.

Hao Li, Salk Institute for Biological Studies

The discovery suggests that in its creation of memories, the brain may be biased toward remembering things fearfully — an evolutionary quirk that may have helped to keep our ancestors cautious.

The findings “give us significant insights into how we deal with conflicting emotions,” said Tomás Ryan, a neuroscientist at Trinity College Dublin who was not involved in the study. It “has really challenged my own thinking in how far we can push a molecular understanding of brain circuitry.”

It also opens opportunities to probe the biological underpinnings of anxiety, addiction and other neuropsychiatric conditions that may sometimes arise when breakdowns in the mechanism lead to “too much negative processing,” Li said. In theory, targeting the mechanism through novel drugs could be an avenue to treatment.

“This is really an extraordinary study” that will have a profound impact on psychiatric concepts about fear and anxiety, said Wen Li, an associate professor at Florida State University who studies the biology of anxiety disorders and was not involved in the study.

Dangerous Berries

Neuroscientists are still far from understanding exactly how our brains encode and remember memories — or forget them, for that matter. Valence assignment is nonetheless seen as an essential part of the process for forming emotionally charged memories.

The ability of the brain to record environmental cues and experiences as good or bad memories is critical for survival. If eating a berry makes us very sick, we instinctively avoid that berry and anything that looks like it thereafter. If eating a berry brings delicious satisfaction, we may seek out more. “To be able to question whether to approach or to avoid a stimulus or an object, you have to know whether the thing is good or bad,” Hao Li said.

Memories that link disparate ideas — like “berry” and “sickness” or “enjoyment” — are called associative memories, and they are often emotionally charged. They form in a tiny almond-shaped region of the brain called the amygdala. Though traditionally known as the brain’s “fear center,” the amygdala responds to pleasure and other emotions as well.

One part of the amygdala, the basolateral complex, associates stimuli in the environment with positive or negative outcomes. But it was not clear how it does that until a few years ago, when a group at the Massachusetts Institute of Technology led by the neuroscientist Kay Tye discovered something remarkable happening in the basolateral amygdala of mice, which they reported in Nature in 2015 and in Neuron in 2016.

Tye and her team peered into the basolateral amygdala of mice learning to associate a sound with either sugar water or a mild electric shock and found that, in each case, connections to a different group of neurons strengthened. When the researchers later played the sound for the mice, the neurons that had been strengthened by the learned reward or punishment became more active, demonstrating their involvement in the associated memory.

It’s rare to find a one-to-one relationship between a signal and a behavior, or a circuit and a function.

Jeffrey Tasker, Tulane University

But Tye’s team couldn’t tell what was steering the information toward the right group of neurons. What acted as the switch operator?

Dopamine, a neurotransmitter known to be important in reward and punishment learning, was the obvious answer. But a 2019 study showed that although this “feel-good” molecule could encode emotion in memories, it couldn’t assign the emotion a positive or negative value.

So the team began looking at the genes expressed in the two areas where positive and negative memories were forming, and the results turned their attention to neuropeptides, small multifunctional proteins that can slowly and steadily strengthen synaptic connections between neurons. They found that one set of amygdala neurons had more receptors for neurotensin than the other.

This finding was encouraging because earlier work had shown that neurotensin, a meager molecule just 13 amino acids long, is involved in the processing of reward and punishment, including the fear response. Tye’s team set out to learn what would happen if they changed the amount of neurotensin in the brains of mice.

Tiny Molecule With a Big Personality

What followed were years of surgically and genetically manipulating mouse neurons and recording the behaviors that resulted. “By the time I finished my Ph.D., I had done at least 1,000 surgeries,” said Praneeth Namburi, an author on both of the papers and the leader of the 2015 one.

During that time, Tye moved her growing lab across the country from MIT to the Salk Institute. Namburi stayed at MIT — he now studies how dancers and athletes represent emotions in their movements — and Hao Li joined Tye’s lab as a postdoc, picking up Namburi’s notes. The project was stalled further by the pandemic, but Hao Li kept it going by requesting essential-personnel status and basically moving into the lab, sometimes even sleeping there. “I don’t know how he stayed so motivated,” Tye said.

The researchers knew that the neurons in the amygdala did not make neurotensin, so they first had to figure out where the peptide was coming from. When they scanned the brain, they found neurons in the thalamus that produced a lot of neurotensin and poked their long axons into the amygdala.

Tye’s team then taught mice to associate a tone with either a treat or a shock. They found that neurotensin levels increased in the amygdala after reward learning and dropped after punishment learning. By genetically altering the mice’s thalamic neurons, they were able to control how and when the neurons released neurotensin. Activating the neurons that released neurotensin into the amygdala promoted reward learning, while knocking out the neurotensin genes strengthened punishment learning.

They also discovered that the assignment of valences to environmental cues promotes active behavioral responses to them. When the researchers prevented the amygdala from receiving information about positive or negative valence by knocking out the thalamic neurons, the mice were slower to collect rewards; in threatening situations, the mice froze rather than running away.

So what do these results suggest would happen if your valence-assignment system broke down — while an angry rhino was charging you, for example? “You would just only slightly care,” Tye said. Your indifference in the moment would be recorded in the memory. And if you found yourself in a similar situation later in life, your memory would not inspire you to try urgently to escape, she added.

However, the likelihood that an entire brain circuit would shut down is low, said Jeffrey Tasker, a professor in the brain institute at Tulane University. It’s more probable that mutations or other problems would simply prevent the mechanism from working well, instead of reversing the valence. “I would be hard-pressed to see a situation where somebody would mistake a charging tiger as a love approach,” he said.

Hao Li agreed and noted that the brain likely has fallback mechanisms that would kick in to reinforce rewards and punishments even if the primary valence system failed. This would be an interesting question to pursue in future work, he added.

One way to study defects in the valence system, Tasker noted, might be to examine the very rare people who don’t report feeling fear, even in situations routinely judged as terrifying. Various uncommon conditions and injuries can have this effect, such as Urbach-Wiethe syndrome, which can cause calcium deposits to form in the amygdala, dampening the fear response.

The Brain Is a Pessimist

The findings are “pretty big in terms of advancing our understanding and thinking of the fear circuit and the role of the amygdala,” Wen Li said. We are learning more about chemicals like neurotensin that are less well known than dopamine but play critical roles in the brain, she added.

The work points toward the possibility that the brain is pessimistic by default, Hao Li said. The brain has to make and release neurotensin to learn about rewards; learning about punishments takes less work.

Further evidence of this bias comes from the reaction of the mice when they were first put into learning situations. Before they knew whether the new associations would be positive or negative, the release of neurotensin from their thalamic neurons decreased. The researchers speculate that new stimuli are assigned a more negative valence automatically until their context is more certain and can redeem them.

“You’re more responsive to negative experiences versus positive experiences,” Hao Li said. If you almost get hit by a car, you’ll probably remember that for a very long time, but if you eat something delicious, that memory is likely to fade in a few days.

Ryan is more wary of extending such interpretations to humans. “We’re dealing with laboratory mice who are brought up in very, very impoverished environments and have very particular genetic backgrounds,” he said.

Still, he said, it would be interesting to determine in future experiments whether fear is the actual default state of the human brain — and if that varies for different species, or even for individuals with different life experiences and stress levels.

The findings are also a great example of how integrated the brain is, Wen Li said: The amygdala needs the thalamus, and the thalamus likely needs signals from elsewhere. It would be interesting to know which neurons in the brain are feeding signals to the thalamus, she said.

A recent study published in Nature Communications found that a single fear memory can be encoded in more than one region of the brain. Which circuits are involved probably depends on the memory. For example, neurotensin is probably less crucial for encoding memories that don’t have much emotion attached to them, such as the “declarative” memories that form when you learn vocabulary.

For Tasker, the clear-cut relationship that Tye’s study found between a single molecule, a function and a behavior was very impressive. “It’s rare to find a one-to-one relationship between a signal and a behavior, or a circuit and a function,” Tasker said.

Neuropsychiatric Targets

The crispness of the roles of neurotensin and the thalamic neurons in assigning valence might make them ideal targets for drugs aimed at treating neuropsychiatric disorders. In theory, if you can fix the valence assignment, you might be able to treat the disease, Hao Li said.

It’s not clear whether therapeutic drugs targeting neurotensin could change the valence of an already formed memory. But that’s the hope, Namburi said.

Pharmacologically, this won’t be easy. “Peptides are notoriously difficult to work with,” Tasker said, because they don’t cross the blood-brain barrier that insulates the brain against foreign materials and fluctuations in blood chemistry. But it’s not impossible, and developing targeted drugs is very much where the field is headed, he said.

Related:

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1. Scientists Watch a Memory Form in a Living Brain
2. Neural Noise Shows the Uncertainty of Our Memories
3. The Brain Maps Out Ideas and Memories Like Spaces

Our understanding of how the brain assigns valence still has important gaps. It’s not clear, for example, which receptors the neurotensin is binding to in amygdala neurons to flip the valence switch. “That will bother me until it is filled,” Tye said.

Too much is also still unknown about how problematic valence assignments may drive anxiety, addiction or depression, said Hao Li, who was recently appointed as an assistant professor at Northwestern University and is planning to explore some of these questions further in his new lab. Beyond neurotensin, there are many other neuropeptides in the brain that are potential targets for interventions, Hao Li said. We just don’t know what they all do. He’s also curious to know how the brain would react to a more ambiguous situation in which it wasn’t clear whether the experience was good or bad.

These questions linger in Hao Li’s brain long after he packs up and goes home for the night. Now that he knows which network of chatty cells in his brain drives the emotions he feels, he jokes with friends about his brain pumping out neurotensin or holding it back in response to every bit of good or bad news.

“It’s clear that this is biology, it happens to everyone,” he said. That “makes me feel better when I’m in a bad mood.”

TIME & PRODUCTIVITY

Your Never-to-Do List: How You’re Wasting Time Every Single Day

Don’t blame your kids, your job, or Instagram for stealing all of your precious hours. These bad habits are killing your productivity and stressing you out. How to stop wasting time.

By ADDitude EditorsVerified Updated on April 13, 2022

1 of 10

To Do, or Not to Do?

Chances are, your to-do list is several pages long — and growing! But what about your “never-to-do” list — a list of time and energy wasters you should try to avoid as much as possible? When bad ADHD habits stifle your time management and productivity, it might be a good time to reevaluate what you’re doing. Stop wasting time and stay away from these 9 habits that prevent you from getting things done.

2 of 10

Avoid Important (But Painful) Tasks

Adults with ADHD are no strangers to procrastination. We’ve all put off important assignments right up until the last minute — a strategy that often ends with a stress-fueled burst of last-minute energy, which is not the healthiest way to operate. The first step of any project is usually the hardest, but once you start, you often find it’s not as hard as you were imagining. For strategies on managing and overcoming procrastination, read this.

3 of 10

Accept Nothing Less Than Perfection

People with ADHD strike a unique balance — we’re often both procrastinators and perfectionists. Fear of making a mistake leads to procrastination, and procrastination leads nowhere good. In order to keep your perfectionism from holding you back, get in the habit of doing drafts of your work. The first draft can be just the core idea, while the second and third can iron out the wrinkles.

[Free Expert Resource: Keep Track of Your Time]

4 of 10

Miss the Forest for the Trees

Paying attention to detail is a great trait to have, but don’t let yourself get so obsessed with details that it keeps you from finishing projects on time. If you’re proofreading a document, for example, limit yourself to a set number of read-throughs before you send it on — so you don’t spend all day staring at the same piece of paper.

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5 of 10

Ignore Your Long-Term Goals

Do you know what you want to accomplish today? What about this month? This year? It may seem silly to think about something that seems far away, but taking some time to figure out where you hope to be in the future can help you in your day-to-day. Once you work out your goals and priorities — even for the very long-term — it’s easier to push away unimportant tasks and structure your work.

6 of 10

Try to Do Everything

Not all tasks are created equal! Trying to do every little thing you “should” do is a recipe for stress and disappointment — and may cause you to miss crucial deadlines because you got caught up in non-crucial tasks. Look at your to-do list and slash the non-essential tasks. You’ll have more energy to devote to the things you really need to do, and you’ll end each day feeling like you accomplished what was really important.

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7 of 10

Respond to All Emails (or Texts, or Calls)

It may be tempting to reply to every single email you get — even if it’s just to say thanks — but if you stay stuck in your inbox all day, you won’t have time to get any actual work done. Instead, if you only reply to higher priority emails, you’ll save time, energy, and a whole lot of needless typing.

[Read: The Power of a Well-Crafted To-Do List]

8 of 10

Try to Resolve All Problems Immediately

When you get a new task, it can be tempting to drop what you’re doing and work on it right away. But this interruption can throw you out of your groove, making you unable to complete any task at all. Instead of trying to jump on new tasks right away, mark them down in a “do-later” list. Once you finish what you’re working on, take stock of your do-later list and figure out what needs to come next.

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9 of 10

Never Take Breaks

Everyone needs a break once in awhile — especially adults with ADHD, who can sometimes feel overwhelmed by their racing brains or other ADHD symptoms. Make sure you set aside some time every day — whether it’s ten minutes in the middle of your workday, or an hour when you get home — to unwind and do something relaxing that you enjoy. Your work — and life — will be better for it.

10 of 10

Try to Please Everyone

You can’t control what others think or how they act — the only person you have any control over is yourself. Put your energy into being the best you can be and spending your time with people who love and respect you — and forget about making everyone else happy.

[Free Resource: 19 Ways to Get Things Done]

Tags: to-do lists, treating adults JUMP TO COMMENTS

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Friday, September 9, 2022

Eurasia Review

A Journal of Analysis and News

Schizophrenia And Bipolar Disorder May Be Detectable Years Before Illnesses Begin

September 9, 2022 Eurasia Review 0 Comments

By Eurasia Review

The risk of schizophrenia and bipolar disorder may be detectable years before the illnesses begin, according to new research.

A University College Dublin led study funded by the Health Research Board has found that 50% of people who developed these mental health disorders had attended specialist child and adolescent mental health services (CAMHS) in childhood.

Published in the journal World Psychiatry, the findings suggest the possibility of earlier intervention and even prevention according to Professor Ian Kelleher, from the UCD School of Medicine, who led the international study which was carried out in conjunction with the Finnish Institute for Health and Welfare (THL).

“Schizophrenia and bipolar disorder typically emerge in early adulthood and can have a devastating impact on the individuals affected, as well as on their families,” he said.

“Our findings show that half of individuals who develop these illnesses had come to CAMHS at some stage in childhood, typically many years before they developed schizophrenia or bipolar disorder.

“We know that early intervention is key to improving outcomes for people with serious mental illness. These findings demonstrate the enormous opportunities to provide far earlier intervention, even while still in childhood, by developing specialist early intervention services within existing child and adolescent mental health services”.

Schizophrenia and bipolar disorder are serious mental illnesses affecting about 65 million people worldwide.   Both disorders are usually diagnosed in adulthood and are often associated with high levels of disability, personal and societal cost. Early intervention, however, is known to lead to better outcomes for people affected by these illnesses.

The researchers behind the new study used Finland’s world-leading healthcare registers to trace all individuals born in 1987 throughout childhood and adolescence to see if, between birth and age 17 years, they ever attended CAMHS.

Using unique patient identifiers, the researchers were then able to follow all these individuals up to age 28 years and see who went on to be diagnosed with schizophrenia or bipolar disorder.

They found that the risk of psychosis or bipolar disorder by age 28-years-old was 1.8% for individuals who had not attended CAMHS. For individuals who had attended outpatient CAMHS in adolescence, however, the risk was 15% and for individuals who had been admitted to an inpatient adolescent CAMHS hospital, the risk was 37%.

“This research shows the power of electronic healthcare registers to answer important questions about human health and disease,” said Professor Mika Gissler, THL.

“It demonstrates how healthcare register data can be used to better understand pathways to serious mental illness, from childhood into adulthood, and to identify critical opportunities for early intervention.”

Stressing the importance of early intervention, Professor Ian Kelleher said: “We know it’s crucial to intervene as early as possible to prevent some of the worst effects of these illnesses. But ideally, we would like to be able to intervene even before the onset of illness, to prevent it altogether.

These findings highlight the possibility of intervening far earlier than we do at present, even in childhood and adolescence, to prevent these serious mental illnesses from emerging”.

Diagnosed as bipolar and anxiety; these findings are really interesting and whatsmore the Irish research by Professor Ian Kelleher and his team at UCD Medicine.. Ireland needs support. Only 6% is provided to mental health, half that of the UK contribution. We have Cinderella services and some 800 vacant posts in psychiatry.

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The ObserverPsychology

‘I just go into my head and enjoy it’: the people who can’t stop daydreaming

Illustration by Philip Lay/The Observer.

Psychiatrists may soon recognise ‘maladaptive daydreaming’ as a clinical disorder. But what is it, and how can it be treated?

David Robson Sun 28 Aug 2022 10.00 BST Last modified on Sun 28 Aug 2022 17.51 BST

Every day, Kyla* travels to a fictional universe with advanced space travel. It’s not real, of course – but an incredibly vivid daydream, centred on a protagonist with a detailed history. “It covers 79 years in the life of my main character,” she says. “I know how the whole thing plays out, and I can drop into it at whatever point I want to experience.”

Today, this habit is pure entertainment, which she limits to just an hour a day. “It’s like watching Netflix,” she says. “I just go into my head and enjoy it.” In the past, however, she had felt that her fantasies had become all-consuming. “There was a point where it was like an addiction.”

Karina Lopez tells a similar story. Her daydreams centre on conversations with different characters – some real, some imaginary. She’ll replay the same scenario, tweaking the details – a process she finds incredibly pleasurable. “As soon as I wake up, I want to daydream.”

At college, she would become so lost in these imaginings that she would forget to study for her exams or run errands. “I put off so many things – but in the moment it feels so good,” she says. On average, she now spends about three hours a day immersed in daydreams, but on bad days in the past, she could spend as many as six hours locked in her inner world.

Such reports are of increasing interest to psychologists, who have started to identify a subset of the population marked for their unusually immersive daydreams. At their best, these vivid and compulsive fantasies can be a source of pleasure and comfort, but they can also be a serious cause of procrastination and distraction, and can prevent people from maintaining their social connections, looking after their health or even eating regular meals.

With research revealing that as many as one in 40 people may experience these problems, it seems increasingly likely that “maladaptive daydreaming” will soon be formally recognised as a psychiatric disorder. So what is it? And how can it be treated?

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Prof Eli Somer, a clinical psychologist at the University of Haifa in Israel, was the first to identify the phenomenon. In his practice, he came across six patients who described entering vivid fantasies as a way of soothing their psychological pain.

In the wake of a romantic breakup, one patient simply continued the relationship in his head; another, facing extreme loneliness, would imagine the conversations he wished he’d been able to have. “It’s an escape from what is happening in the here and now,” a third patient told him. “There are many circumstances in daily life that frighten me. Daydreaming helps me not feel the fear.”

Somer recognised their reports as a form of dissociation that had not been described in the scientific literature before, and so, coining the term maladaptive dreaming, he wrote a paper describing the phenomenon for the Journal of Contemporary Psychotherapy.

For many maladaptive daydreamers, the fantasies are so rewarding that they take precedence over real life experiences

It was immediately apparent that these intense fantasies were very different from the kind of mind-wandering the average person might experience. “Mind-wandering can be fleeting thoughts,” explains Dr David Marcusson-Clavertz, a psychologist at Linnaeus University in Växjö, Sweden. “You might be reading a book and then spontaneously think of an old friend.” While the people with maladaptive daydreaming might also be prone to these distractions, their fantasies are complex, detailed and compulsive.

Consider the experiences of a maladaptive daydreamer called Michelle. Her daydreams have involved international travel, working as a reporter at a disaster zone and conducting important research about Covid. The story she constructs is often so complex that she can spend hours finding the specific details on the internet to fuel the fantasies. “In my head, I see it very clearly – as if I was picturing what I did yesterday.”

Many maladaptive daydreamers report being prompted by regular movements – and they may even use rocking motions or pacing to get into the correct mental zone, a little like self-hypnosis.

Despite the sheer detail of their fantasies, immersive daydreamers do not confuse their fantasies with reality, and they don’t tend to come out of nowhere. “It’s voluntary – it’s not intrusive,” says Somer. This makes it different from psychosis, in which someone has less awareness of their mental state, and the daydreaming is not – by itself – harmful for someone’s mental health.

The problems come when it is taken to excess. As Somer’s original paper had noted, many people use their daydreams to escape from negative emotions. This might offer short-term relief, but it can prevent the person from confronting the issues that may be at the source of their distress. Along these lines, a recent study by Somer and Dr Nirit Soffer-Dudek, of Ben-Gurion University of the Negev, asked participants to keep a daily record of their feelings and behaviours over a two-week period. They found that negative emotions often rose after a day of particularly excessive daydreaming.

A study by Prof Alessandro Musetti at the University of Parma in Italy, meanwhile, examined people’s reactions to the early stages of the Covid-19 pandemic. He found that maladaptive daydreamers were especially likely to experience higher levels of depression and anxiety, which again suggests that the escape into an alternative reality does little to resolve the actual distress that someone is facing.

For many maladaptive daydreamers, the fantasies are so rewarding that they take precedence over real life experiences. Consider the words of Pietra: “Nothing else feels as enjoyable.” She says that at one point in her life, she could not go 10 minutes without entering a daydream. “I would go into them no matter what I was doing.” This interfered with her academic studies, her relationships, and even eating regular meals. “I’d postpone my meals by two or three hours while I starved,” she says. “And food was right there to be eaten.”

Such reports have led some psychologists, including Somer, to view maladaptive daydreaming as an addiction, akin to compulsive gambling or alcoholism. “Immersive daydreaming could be like drinking a glass of superb wine,” he says. “But downing a bottle of vodka every day is not good.”

Intriguingly, maladaptive daydreaming seems to be far more common among people who have been diagnosed with ADHD

Despite the severe difficulties they are facing, many of the maladaptive daydreamers find it hard to share their experiences with the people around them. “I’ve only told three people and they had similar reactions: they looked as if they wanted to laugh,” Karina Lopez tells me. Michelle agrees that, from the outside, the issues can seem superficially trivial. “It seems like something that you could very much control,” she says. “But trust me: I’ve tried.” For this reason, she says, it has been harder to disclose her maladaptive dreaming than her anxiety and depression, even with the stigma surrounding those mental illnesses.

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Despite our lack of awareness and understanding, these kinds of experiences are surprisingly common. In a survey of more than 1,000 Jewish Israeli participants, Soffer-Dudek found that about 2.5% of the population met the criteria for maladaptive daydreaming. That’s one in 40 people, which would mean that the condition is more common than anorexia nervosa or obsessive-compulsive disorder, and similar in prevalence to generalised anxiety disorder. While further studies will need to establish the prevalence among larger and more global samples, it seems probable that at least one of your acquaintances will be struggling with an urge to escape into their immersive fantasies.

Intriguingly, maladaptive daydreaming seems to be far more common among people who have been diagnosed with attention-deficit and hyperactivity disorder, with a recent paper reporting a prevalence of about 20%. (Moreover, 77% of people with maladaptive daydreaming have been diagnosed with ADHD.) The constant desire to slip into daydreams, it seems, is contributing to difficulties in concentration and focus – and this group may require different forms of treatment from other people with ADHD.

Given these findings, Somer believes that maladaptive daydreaming should be recognised formally as a disorder by organisations such as the American Psychiatric Association, which publishes the influential Diagnostic and Statistical Manual of Mental Disorders. “We have accumulated a body of evidence to show in the reliability of this construct, and that it cannot be better explained by any other psychiatric condition,” he says, adding that he has already received positive feedback for the proposal.

Musetti agrees that we need greater awareness among health professionals. He says there’s a quickly growing number of people online describing maladaptive daydreaming, but these bloggers often hit a wall when they try to get professional help. “They often won’t find any recognition of their suffering, or a suitable treatment,” he says.

Exactly how maladaptive daydreaming should be treated is an open question – though there are promising signs that people can learn to control their habit. In 2018, Somer published a case study of a 25-year-old undergraduate named Ben who would spend around three hours a day in his fantasies. Ben had originally been diagnosed with ADHD and was given a course of Ritalin, which only increased his tendency to daydream.

Working with Ben to find a potential solution, Somer suggested cognitive behavioural therapy and mindfulness training. Ben would note down the circumstances that seemed to be associated with his maladaptive daydreaming, for example, and prepare careful plans for each day to try to reduce the temptation. And when he found himself falling into his fantasies, he would try to interrupt the daydreams’ plots with unsatisfying endings. By the end of the six months, he had reduced his habit by about 50%.

Based on this success, Somer has since conducted a clinical trial with hundreds of participants. Although the study has not yet been published, he says the results are “very encouraging”.

Both Somer and Musetti agree that in many cases, it may not be possible, or even desirable, for people to eliminate their daydreams altogether; instead, the aim should be to enable them to regulate their habit, and to find alternative ways to process their negative emotions. “They could perhaps confine it to certain times of day,” says Somer.

Kyla, for one, would be reluctant to lose her daydreams completely. While her fantasies had once been maladaptive, they no longer dominate her life. Rather than using the daydreams simply to escape negative feelings, she says she can use conversations with her characters to gain perspective on problems. In one mental health crisis, she believes that this even saved her life. To suppress the daydreams altogether would be impossible, she thinks. “It’s just how your brain works – you can’t just turn it off.”

* To preserve their privacy, Kyla, Michelle and Pietra asked the Observer not to print their surnames

• The Expectation Effect: How Your Mindset Can Transform Your Life by David Robson is published by Canongate (£18.99). To support the Guardian and Observer order your copy at guardianbookshop.com. Delivery charges may apply

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Article

TBI no more ADHD so massive mental impact. Diagnosed with cancer in 2017 now a survivor and wrote book; speak about forever presenting of being in the now and keeping engaged via twitter, emails and constant routine.

Fortune Favours the Brave

by Michelle Marcella Clarke

Amazon

Memory

Stop drinking, keep reading, look after your hearing: a neurologist’s tips for fighting memory loss and Alzheimer’s

When does forgetfulness become something more serious? And how can we delay or even prevent that change? We talk to brain expert Richard Restak

Gaby Hinsliff

Wed 17 Aug 2022 06.00 BST

You walk into a room, but can’t remember what you came in for. Or you bump into an old acquaintance at work, and forget their name. Most of us have had momentary memory lapses like this, but in middle age they can start to feel more ominous. Do they make us look unprofessional, or past it? Could this even be a sign of impending dementia? The good news for the increasingly forgetful, however, is that not only can memory be improved with practice, but that it looks increasingly as if some cases of Alzheimer’s may be preventable too.

Neuroscientist Dr Richard Restak is a past president of the American Neuropsychiatric Association, who has lectured on the brain and behaviour everywhere from the Pentagon to Nasa, and written more than 20 books on the human brain. His latest, The Complete Guide to Memory: The Science of Strengthening Your Mind, homes in on the great unspoken fear that every time you can’t remember where you put your reading glasses, it’s a sign of impending doom. “In America today,” he writes “anyone over 50 lives in dread of the big A.” Memory lapses are, he writes, the single most common complaint over-55s raise with their doctors, even though much of what they describe turns out to be nothing to worry about.

Coming out of a shop and not being able to remember where you left the car, for example, is perfectly normal: it’s likely you just weren’t concentrating when you parked, and therefore the car’s location wasn’t properly encoded in your brain. Forgetting what you came into a room for is probably just a sign you’re busy and preoccupied with other things, says Restak.

“Samuel Johnson said that the art of memory is the art of attention,” he says, down the line from his office in Washington DC (at 80, Restak is still a practising clinical professor at George Washington Hospital University School of Medicine and Health). “Most of these sins of ‘memory loss’ are sins of not paying attention. If you’re at a party and you’re not really listening to someone, because you are still thinking about some work-related matter, suddenly later you find you can’t remember their name. The first thing is you put the information in memory – that’s consolidating it – and then you have to be able to retrieve it. But if you’ve never consolidated it in the first place, it doesn’t exist.”

But what if you forget where you left your car keys, and eventually find them inside the fridge? “That’s often the first sign of something serious – you open up the refrigerator door, and it’s the newspaper, or your car keys, inside. That’s a little bit beyond forgetful.”

Memory does vary, he points out, and some people will always have been scatty. But the real red flag is a change that seems out of character. If you’re a keen card player who prides yourself on always keeping track of which cards have been played, and suddenly realise you can’t do that any more, it could be worth investigating. Similarly, Restak has noticed that many patients in the early stages of dementia stop reading fiction, because it’s too difficult to remember what the character said or did a few chapters earlier – which is unfortunate, he says, because reading complex novels can be a valuable mental workout in itself.

Restak and his wife are currently on Alexandre Dumas’s The Count of Monte Cristo, which has a complex sprawling cast: “It’s an exercise in being able to keep track of characters without going backwards from one page to another.” If that’s already difficult for you, he says, it’s fine to underline the first mention of a new character and then flip back to remind yourself later if necessary. “Do whatever you have to, to keep yourself reading.”

Like following a recipe, keeping track of fictional plots is an exercise of working memory – as distinct from short-term memory (temporarily storing something like a phone number that you can safely forget the minute you’ve dialed it) or episodic memory, which covers things like recollections of childhood. Working memory is what we use to “work with the information we have”, says Restak, and it’s the one we should all prioritise. Left to its own devices, he points out, memory naturally starts to decline from your 30s onwards, which is why he advocates practising it daily.

Restak’s book is full of games, tricks and ideas for honing recall, often involving creating vivid visual images for things you want to remember. He holds a mental map of his neighbourhood in his head, incorporating visually familiar landmarks – his house, the local library, a restaurant he often goes to – and for each item on a list he wants to remember, he will create a memorable visual image and attach it somewhere specific on the map. To remember to buy milk, bread and coffee later, for example, he might envisage his house transformed into a carton of milk, the library full of loaves rather than books, and a giant cup of coffee spilling out of the restaurant.

The book also touches on broader lifestyle advice. Recently, research from the Lancet’s commission on dementia suggested up to 40% of Alzheimer’s cases could be prevented or delayed – much like heart disease and many cancers – by limiting 12 risk factors, from smoking to obesity and heavy drinking.

Restak advises his patients to quit alcohol by 70 at the latest. Over 65, he writes, you typically have fewer brain neurons than when you were younger, so why risk them? “Alcohol is a very, very weak neurotoxin – it’s not good for nerve cells.”

He’s also an advocate of the short afternoon nap, since getting enough sleep helps brain function (which may help explain why sleep-deprived new mothers, and menopausal women suffering from night sweats and insomnia, often complain of brain fog).

More unexpectedly, he recommends tackling hearing or vision problems promptly, because they make it harder to engage in conversations and hobbies that keep the cogs turning. “You have to have a certain level of vision to read comfortably, and if that’s missing then you are going to read less. As a result of that, you’re going to learn less and be a less interesting person to other people. All of these things really come down to socialisation, which is the most important part of keeping away Alzheimer’s and dementia, and keeping your memory.”

Socialisation is the most important part of keeping away Alzheimer’s and dementia, and keeping your memory

Is he saying that honing your memory can stop you getting Alzheimer’s? “No one can guarantee that anybody else is not going to get dementia. Take somebody like Iris Murdoch (the late writer, who suffered from it) – there’s probably not a more brilliant woman in all of Europe, so it shows that it can happen. But I compare it to driving a car: you can’t guarantee you won’t get in an accident but by wearing your seatbelt and checking your speed and keeping the car maintained, you can lessen your chances.”

Not all memories, however, are ones people want to treasure. Many have mental images they’d rather forget, whether it’s of an embarrassing mistake or a painful failed relationship, or intrusive flashbacks from post-traumatic stress disorder.

The fantasy of wiping the slate clean is a pervasive one in popular culture, from the film Eternal Sunshine of the Spotless Mind (about a couple who break up, and use a futuristic machine to zap memories of each other) to the Men in Black franchise, where alien-fighting secret agents electronically erase the memories of anyone who sees them in action, thus protecting mere mortals from the truth about what’s out there.

These may be strictly fantasies but we already have the technology, Restak suggests, to inhibit people from laying down memories that might in future haunt them. Beta blockers, drugs sometimes used to treat high blood pressure, have been found to dull the emotional response triggered when something frightening is recalled, but Restak says there’s evidence they also interfere with the consolidation of events as memories.

“There are actually discussions about whether these drugs should be part of the armoury that would be used if we have got to send people into terrible scenarios, such as after a shooting – that must be a horrible experience, to go in there and clean these places up.” But it’s a blunt tool – the drugs can’t distinguish between memories that might be useful in future to emergency first responders, and ones that are simply distressing – and raises complex questions about the ethics of tampering with people’s minds.

Don’t just look on dementia as a hopeless situation, although it’s a very frustrating one

Restak also highlights concerns about what he calls “memory wars”, or attempts to influence a nation’s collective memory by disputing what a particular event or period means. “The way we frame it in our memory is how we then perceive the world around us, and that’s what is encoded in the memory,” he says, pointing to recent political arguments in the US over whether the technical recession the country has entered – defined as two quarters of economic contraction – is actually a “real” recession. “It’s important because if you think you are in a recession you have certain beliefs and modes of action, and that’s how we are going to remember July 2022.”

And, as he argues, memory is intrinsic to who we are. It binds families and couples together, as we reminisce about our shared past. For individuals, meanwhile, past experience gives life meaning and texture. “We are what we can remember. The more things you can remember, the more clearly, the more full and enriched our personalities,” says Restak, who argues that the personalities of dementia sufferers can become flatter and more attenuated. “People say ‘Oh, they don’t seem to be the same person.’” Perhaps that’s why we fear Alzheimer’s so much: memory is so closely allied to a sense of self.

Yet even after memory loss has set in, it’s not necessarily too late to help people hold on to whatever’s left. One neurologist Restak knows had two patients who “weren’t sure where they were or what day it was”, but could still play a decent game of bridge. If someone you love has Alzheimer’s, Restak says, don’t upset them by constantly challenging mistakes or memory lapses; instead, meet them where they are now.

“What are they still interested in? Talk about that, work with that, because a lot of things stay within normal range even with a pattern of dementia,” he says. “You don’t just look on it as a hopeless situation, although it’s a very frustrating one and it’s very sad.” Where a flicker of memory remains, perhaps, there’s hope.

L

Like many American couples of modest but comfort­able means, Susie Mc­Kinnon and her husband, Eric Green, discovered the joys of cruise vacations in middle age. Their home in a quiet suburb of Olympia, Washington, is filled with souvenirs and trinkets from their travels. There’s a plastic lizard in the master bathroom with the words “Cayman Islands” painted on it. From Curaçao there’s a framed patchwork collage made of oilcloth hanging in the entrance hall. On the gray summer day when I visit them, we all sit comfortably in their living room, Green decked out in a bright shirt with “Bermuda Islands” emblazoned on it, from a cruise in 2013. As they regale me with talk of their younger selves and their trips to Jamaica, Aruba, Cozumel, and Mazatlán, they present the very picture of well-adjusted adulthood on the verge of retirement.

Except for one fairly major thing.

As we chat, McKinnon makes clear that she has no memories of all those cruises. No memories of buying the lizard or finding that oilcloth collage. She doesn’t remember any vacation she’s ever taken. In fact, she cannot recall a single moment in her marriage to Green or before it.

Before you start to brace yourself for one of those stories—about the onset of dementia, the slow dissolve of a marriage into a relationship of unrequited love, the loss of self—let me reassure you: McKinnon hasn’t lost anything. She’s never been able to remember those experiences.

For decades, scientists suspected that someone like Susie McKinnon might exist. They figured she was probably out there, living an ordinary life—hard to tell apart from the next person in line at the grocery store, yet fundamentally different from the rest of us. And sure enough, they found her (or rather, she found them) in 2006.

“I don’t remember being smaller or having to reach up for things. I have no impressions of myself as a kid.”

McKinnon is the first person ever identified with a condition called severely deficient autobiographical memory. She knows plenty of facts about her life, but she lacks the ability to mentally relive any of it, the way you or I might meander back in our minds and evoke a particular afternoon. She has no episodic memories—none of those impressionistic recollections that feel a bit like scenes from a movie, always filmed from your perspective. To switch metaphors: Think of memory as a favorite book with pages that you return to again and again. Now imagine having access only to the index. Or the Wikipedia entry.

“I know bits and pieces of stuff that happened,” McKinnon says of her own childhood. But none of it bears a vivid, first-person stamp. “I don’t remember being shorter or smaller or having to reach up for things. I have no images or impressions of myself as a kid.” She finds herself guessing a lot at what her experiences must have been like: She assumes the Cayman Islands were hot. Perhaps she and Green walked around a lot there. “It was probably sometime between 2000 and 2010,” she ventures.

The way McKinnon experiences life scrambles much of what we presume is essential to being human. No less a figure than the philosopher John Locke argued that memory, the kind McKinnon lacks, is the very thing that constitutes personal identity. It’s hard to even imagine what it would feel like to be without these kinds of memories; when we do, we picture disaster. Last year’s blockbuster Pixar film, Inside Out, hinged on the idea that if the main character loses her core memories, then her “islands of personality” collapse into nothingness.

McKinnon has no core memories that she is aware of. But there can be no doubt of her personality. She is a liberal white woman who married a black man despite her conservative father’s disapproval. A Catholic who decided somewhere along the way that religion wasn’t for her. She’s bashful and sensitive. Intuitive, curious, and funny. She has a job—she’s a retirement specialist for the state of Washington—and she has hobbies, values, beliefs, opinions, a nucleus of friends. Though she doesn’t remember being a part of the anecdotes that shaped her into this person, she knows very well who she is. Which raises the question: Just how expendable is this supposedly essential part of being human after all?

Music has a powerful way of evoking memories. For McKinnon’s husband, this is especially true of songs by Motown acts like the Temptations and the Miracles. They take him back to weekend nights in Chicago when he was young, when he paid a quarter to go into someone’s basement and make out with a girl as music played in the dark. People called them quarter parties. Listening to Motown also reminds him of Saturdays with his cousins at the Regal, where for three bucks he watched performers like Marvin Gaye. It was always crowded and hot and smelled of stale popcorn. The guys wore $10 Ban-Lon shirts. The women wore ankle-length dresses. Most had processed hair, but Green was just starting to grow out an afro.

He grins as he describes the scene, peering through the eyes of a version of himself from decades ago. This was before he and McKinnon met as coworkers at a hospital in Illinois; long before they moved west and started going on cruises. “She was friendly—well, she was sexy,” Green says of when they first met. To McKinnon, all this mental time traveling seems magical. “It’s hard for me to believe,” she says.

Our ability to do this—to be the first-person protagonist of our own memories—is part of what psychologists call autonoetic consciousness. It’s the faculty that allows us to mentally reenact past experiences.

Memory researchers used to believe there was just one kind of long-term memory. But in 1972, Endel Tulving, a Canadian psychologist and cognitive neuroscientist, introduced the idea that long-term memory comes in multiple forms. One is semantic memory, which allows us to remember how to spell a word like, say, autonoetic. Years from now, you might recall how to spell it, but maybe not when and where you were when you first came across the word and its definition, perhaps in WIRED.

McKinnon performs in a choral ensemble. Lyrics and melodies stick with her, thanks to her intact semantic memory.

Tulving argued that autonoetic consciousness is crucial for the formation of another kind of long-term memory—episodic memory—which integrates time and sensory details in a cinematic, visceral way. Remembering where and when you learned how to spell autonoetic: That’s an episodic memory.

As it happens, McKinnon shares Green’s love of music. She even performs with a choral ensemble. Lyrics, melodies, and harmonies stick with her, thanks to her intact semantic memory. Similarly, she can tell you for a fact that three months ago, she sang a rendition of an old English folk song onstage—a solo. But only Green can supply the scene: how she strolled onto the stage alone and took her place in front of a piano. Green says her performance brought him close to tears. McKinnon thinks she must have felt a mixture of confidence and fear, but really she hasn’t the faintest idea.

She does, however, have a recording, and we decide to give it a listen. She walks over to the living room CD player, pops in a disc, and presses Play. “Are you ready?” she asks nervously. McKin­non retreats into herself, pacing self-consciously between the sofa, dining room chairs, and kitchen counter.

An alto fills the living room, a voice from another time. “The water is wide,” the voice sings. “I cannot cross o’er.” McKinnon notices a tremble in the voice and giggles with surprise. It’s as if she’s experiencing the performance for the first time.

McKinnon first began to realize that her memory was not the same as everyone else’s back in 1977, when a friend from high school, who was studying to be a physician’s assistant, asked if she would participate in a memory test as part of a school assignment. When her friend asked basic questions about her childhood as part of the test, McKinnon would reply, “Why are you asking stuff like this? No one remembers that!” She knew that other people claimed to have detailed memories, but she always thought they embellished and made stuff up—just like she did.

McKinnon’s friend was so disturbed by her responses that she suggested McKinnon get her memory checked by a professional. McKinnon put the exchange aside for almost three decades. Then one day in 2004, she came across an article about Endel Tulving, the researcher who had originally characterized the difference between episodic and semantic memory.

McKinnon read about how, at the University of Toronto, Tulving studied an amnesic patient, K. C., who was in a motorcycle accident at 30 that resulted in brain damage affecting his episodic memory. He could not remember anything in his life except experiences from the last minute or two. Yet despite this deficiency, the patient could remember basic knowledge learned before his accident, like math and history, and when taught new information in experiments, he could retain lessons, even though he could not recall visits to the laboratory where he was taught. His case became crucial to Tulving’s theories about memory.

McKinnon’s brain and life, as far as she knew, seemed to be healthy and intact.

Like McKinnon, people with amnesia usually lose their episodic memories and keep their semantic ones. But amnesiacs tend to come by their memory loss through brain trauma, developmental disorders, or degenerative conditions. And they are often impaired in their day-to-day functioning; they cannot live normal lives. Reading about Tulving’s case studies, McKinnon recognized a resemblance to her own experiences—minus the brain lesions, injuries, or debilitating side effects. Her brain and life, as far as she knew, seemed to be healthy and intact.

One of Tulving’s arguments struck a particular chord. A profile of the psychologist reported his belief “that some perfectly intelligent and healthy people also lack the ability to remember personal experiences. These people have no episodic memory; they know but do not remember. Such people have not yet been identified, but Tulving predicts they soon will be.”

McKinnon felt too intimidated to contact Tulving himself; he seemed too famous. So instead she set her sights on Brian Levine, a senior scientist at the Rotman Research Institute in Toronto who had worked closely with Tulving and whose expertise in episodic and autobiographical memory caught her eye.

On August 25, 2006, McKinnon sent Levine an email that referenced Tulving’s prediction about healthy people with no episodic memories: “I think there’s at least a possibility that I might be one of the people he was describing.

“I’m 52 y/o, extremely stable, with a very satisfying life & well-developed sense of humor. Contacting you is a big (and, frankly, scary) step for me … I’ll appreciate any guidance you may be able to give me.”

“I get a lot of emails from people with various issues,” Levine says. “With Susie, I felt like this was worth pursuing.” So Levine invited McKinnon to his lab in Toronto. His first move, in collaboration with researcher Daniela Palombo, was to begin looking for some underlying physiological or psychological explanation for McKin­non’s apparent lack of episodic memories: a neurological condition, trauma, or brain damage caused by anoxia at birth. They found no such thing.

Next, Levine ran McKinnon through something called an autobiographical interview, to vet her own report that she lacks episodic memories. Before the interview, his lab team spoke with Green, a close friend of McKinnon’s, and McKinnon’s brother and mother, asking each for stories about McKinnon that they would try to verify with her.

When Levine and colleagues quizzed McKinnon about events that her friends and relatives described—like the time she was in The Sound of Music during high school—she had no such recollections, even when she was probed with follow-up questions like “Do you remember any objects in the environment?” The interview seemed to confirm that, sure enough, McKinnon had no recognizable episodic memories.

“If humans can get by so well without episodic memories, why did we evolve to have them in the first place?”

Soon, Levine discovered two more healthy individuals who also seemed to lack episodic memories. Both were middle-aged men with successful jobs, one of them a PhD. One was in a long-term relationship. Levine put both men through the same battery of tests in his lab. He also ran all three of his patients through an MRI machine. Each showed reduced activity in regions of the brain crucial to the mind’s understanding of the self, the ability to mentally time travel, and the capacity to form episodic memories.

Levine published a study about Mc­Kinnon and his two other subjects in Neuropsychologia in April 2015. Since then, hundreds of people claiming to have severely deficient autobiographical memory have reached out to Levine’s team. Each must go through a set of tests as well, he says, and results might lead to only a dozen or so provable cases. But the response suggests that the discovery of McKinnon and the other two subjects wasn’t a fluke. “It raises fairly large questions,” Levine says. “What exactly does recollection do for us?” If members of our species can get by so well without episodic memories, why did we evolve to have them in the first place? And how long are they liable to stick around?

Spend enough time with McKinnon and it’s hard to escape the creeping sense that she’s not just different—she’s lucky. Memories that would be searing to anyone else leave little impression on her. Like the time in 1986 when the couple was living in Arizona and Green was jumped by a group of white men while out fishing. When he came home, his head was covered with welts. “She went to get ice and she started crying,” Green says. He began to cry too. They felt terrorized.

Once again, McKinnon knows the salient facts of the story, but the details and the painful associations all reside with Green. For McKinnon, the memory doesn’t trigger the trauma and fear associated with it. “I can imagine being upset and scared, but I don’t remember that at all,” she says. “I can’t put myself back there. I can only imagine what it would have been like.”

McKinnon also quickly forgets arguments, which might be the reason she and Green have stayed together so long, she jokes. She cannot hold a grudge. She is unfamiliar with the feeling of regret and oblivious to the diminishments of aging. A 1972 yearbook photo shows that she was once a petite brunette with a delicate face framed by a pixie cut. (“Dorky little innocent thing,” she says, looking at the picture.) On an intellectual level, McKinnon knows that this is her; but put the picture away and, in her mind, she has always been the 60-year-old woman she is now, broad-­shouldered and fair, her face pinkish and time-lined, her closely cropped hair white and gray. She doesn’t know what it’s like to linger in a memory, to long for the past, to dwell in it.

Three More Cases That Changed What We Know About Memory

H. M.

In August 1953, doctors in Hartford, Connecticut, removed both hippocampi from the brain of Henry Molaison (H. M.) in hopes of curing his epileptic seizures. The operation had the desired effect, but it also left Molaison with profound amnesia and rendered him unable to form new memories, much to the surprise of his neurosurgeon. He was, however, still articulate, intelligent, and able to learn new skills. Studied for decades by MIT researchers, his case fundamentally transformed how psychologists understand memory: It showed that the brain handles long-term and short-term memory differently and that various functions reside in separate areas of the brain.

K. C.

After a fateful encounter with a bale of hay, a dune buggy crash, and—finally—a motorcycle accident, Kent Cochrane (K. C.) sustained damage to multiple parts of his brain and lost all memory of his past experiences. Cochrane could remember facts but not where he had learned them, offering scientists a clue to the distinction between semantic and episodic memory. In 2005 a team of psychologists including Endel Tulving wrote that K. C.’s case had helped contribute to “the eventual crumbling of the neat and tidy single-­memory, single-locus model of amnesia.”

A. J.

In 2006, Jill Price (A. J.) became the first person diagnosed with highly superior autobiographical memory, a condition marked by an involuntary, extraordinary ability to remember the past. Researchers at UC Irvine found that Price could recall extraordinarily specific and wide-ranging details—the weekday on which a specific episode of a TV show first aired in the 1980s, for instance—going back to when she was 14. The researchers also noted that she displayed OCD-like symptoms. Price quickly became a media sensation, interviewed on national TV and covered in countless articles, including a 2009 WIRED feature that described her as “the Michael Jordan of autobiography.” —Chelsea Leu

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More than a decade ago a woman named Jill Price came to the attention of scientists at UC Irvine. She exhibited a condition that is pretty much the direct opposite of McKinnon’s: the researchers called it hyperthymestic syndrome, or highly superior autobiographical memory. Price has an extraordinary ability to recall just about any fact that has intersected with her life: July 18, 1984, was a quiet Wednesday, as she writes in her memoir, and Price picked up the book Helter Skelter and read it for the second time. Monday, February 28, 1983, the final episode of M*A*S*H aired, and it was raining. The next day Price’s windshield wipers stopped working as she drove.

In contrast to McKinnon, who has received relatively little press attention, Price became an instant media sensation. Diane Sawyer had her on air twice in one day. Her powers of memory, after all, seemed supremely enviable, superhuman.

But as the UC Irvine researchers—and a story in WIRED—noted, Price’s extraordinary feats of recollection were accompanied by a kind of obsessive-compulsive fixation on recording the details of her life, one that appeared to have taken root after a “traumatizing” move to LA when she was a girl. As an adult in her 40s, she still lived with her parents. And she buttressed her memory with cramped pages full of notes on everything that happened to her in any given day.

Which is all just to say: When it comes to people with highly unusual memories, it’s not clear that we as a culture are so good at choosing who to envy.

You might think that McKinnon would lean on technology to help compensate for her disorder. After all, she lives at a moment when software companies are churning out products that are, essentially, surrogates for the very faculties she lacks. Isn’t a Facebook feed a kind of prosthetic autobiographical memory? Google Photos will even form gauzy retrospective mental associations for you: The artificially intelligent software plunges straight into your photo library, plucks out faces and related events, and automatically generates poignant little videos—synthetic episodic memories. Other software tools aim to capture your entire life in documents—emails, calendar reminders, schoolwork, voicemails, texts, snapshots, videos, and other bits of recordable data—to provide a searchable database of your memories.

And yet the life-logging impulse is lost on McKinnon. Once, she decided to keep a journal to see if she could preserve her memories. “I stopped doing that after two or three days,” she says. “If I get so obsessed with capturing every moment because I’m afraid of losing the memory, I’m never going to experience those moments.” And what else, really, does she have?

She does use email, which sometimes serves as a useful reference. But she doesn’t make a special effort to log her experiences there. And she doesn’t use social media. No Pinterest. No Instagram. She had a Facebook account, but she quit using it. It didn’t interest her.

Even if she had a Facebook feed, she would have very little to put there in the way of photos or videos. McKinnon once borrowed a video camera to film one of their departures on a Caribbean cruise, but she didn’t enjoy it. She lost the feeling of the moment, she says. She likewise doesn’t take photos. She says she doesn’t find them that compelling to look at. Sure enough, I notice there are no pictures on the ­couple’s refrigerator, shelves, or walls. No framed wedding portraits. No posed beach shots. There are just a few photo albums in an upstairs office.

McKinnon pulls down the album of her 1981 courthouse wedding to Green in Maywood, Illinois. There’s a shot of the friends who surprised the newlyweds on the steps outside. There’s one of Green opening a gag gift—a set of four mugs with images of cats having sex. McKinnon is practiced at laughing through all the anecdotes about the day that she has memorized over the years, with help from the album. But looking at the pictures, she says, feels like observing somebody else’s wedding.

Today, though, she learns something new about the day she married Green. As we look over the album, Green mentions a close friend who attended the wedding. “I didn’t even know she was there,” McKinnon says. That’s because there are no photos of this friend. Because she was the one behind the camera.

This actually feels like the kind of error anyone could make: Doesn’t the person behind the camera often get edited out of recall? Even when the person behind the camera is you?

McKinnon is practiced at laughing through all the anecdotes about her wedding day that she has memorized over the years.

While it’s abundantly clear that McKinnon isn’t using technology to become more like us, it’s conceivable that technology could, over the long run, make us all a bit more like McKinnon. My iPhone now holds 1,217 photos and 159 videos just from the past eight months. By focusing on clicking picture after picture, I may actually be blurring away my memories of these experiences through something researchers call “the photo-taking impairment effect.” And by automatically storing all those photos in the cloud—which relieves my mind of the burden of cataloging a bunch of memories—I may be short-circuiting some part of my own process of episodic memory formation.

“What would humanity lose if they lost some of that ability?” McKinnon asks during one of our conversations, as if wondering aloud for me. “If they had technology to replace it, what would be lost? The human experience would change, but would it be a plus? Or a minus? Or—just a change?”

I can hear McKinnon sniffling. We’re sitting in a dark movie theater at Olympia’s Capital Mall, watching Inside Out. Out of the corner of my eye, I see that she’s crying. Most of the movie takes place in the mind of an 11-year-old girl named Riley. The girl’s emotions, represented as cartoon workers in a control room, are on an emergency mission to save her from psychological catastrophe: the loss of her core memories, which look like little glowing orbs with video loops playing across their surface. The core memories power her personality islands, which—well, it’s hard to describe, but suffice it to say the structures of Riley’s personality begin to crumble when her core memories go missing.

McKinnon loves the movie, despite the fact that it seems to present her daily reality as an utter catastrophe. (When we talk about the islands of personality, core memories, and the control room of Riley’s consciousness, McKinnon laughs. “If I have the islands,” she says, “I’m not sure there’s any connections to headquarters.”)

I’m surprised to find out that, even though she doesn’t experience her own life as a narrative, McKinnon loves stories. Especially fantasy and sci-fi: Game of Thrones, The Hunger Games. She’s read all the books, seen all the movies and episodes. She can’t remember what they were about, but that just makes it better. Each time she rereads or rewatches something, it’s like experiencing it for the first time. (Here’s another thing to envy about her: She is impervious to spoilers.)

But she cannot for the life of her make up a story. She does not daydream. Her mind does not wander. This lack of imagination is common among amnesiacs. Most of us can visualize a beach scene on command, for example: We can picture lounging on a chair with a piña colada in hand, roaring waves, grains of sand between our toes. When McKinnon tries this mental exercise, she can visualize a hammock, maybe. “And then there’s probably a palm tree. As soon as, in my mind, I’d try to grab that palm tree, I lose the hammock.” She cannot fit the images together into a finished puzzle. She also cannot play chess, even though her husband plays often. “I can’t hold in my mind more than one move ahead.” In other words, not only does McKinnon lack a window into the past, she also lacks a window into the future.

Related Stories

• The Fully Immersive Mind of Oliver Sacks By Steve Silberman
• The Neurologist Who Hacked His Brain—And Almost Lost His Mind By Daniel Engber
• Inside the New Wave of Electrical Brain Stimulation By Greg Miller

McKinnon and I did a lot that day. We ate, we spoke, we walked around the mall. But of course, she doesn’t remember the details, nor does she seem to mind. While most of us experience life as a story of gain and loss, McKinnon exists always and only in her own denouement. There is no inciting incident. No conflict. And no anxious sense of momentum toward the finale. She achieves effortlessly what some people spend years striving for: She lives entirely in the present.

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Fortune Favours the Brave Paperback – 13 Dec. 2018

by Michelle Marcella Clarke (Author), Prof John Crown MB (Foreword)

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Michelle Clarke takes us on an extraordinary journey, through challenges most of us would never know, were it not for her courage to write this story. In 1993, aged 32, she suffers a fractured skull in a horse-riding accident in Zimbabwe, an event which changes her life forever. The traumatic brain injury adds to her existing conditions of Bipolar, Anxiety and Chronic Fatigue. Her marriage fails and she returns to live in Ireland. In 2003, she meets KT at a bus stop in Dublin. He invites her for coffee, and they have been together ever since. The third member of their team is Freddie, a very special little rescue dog. In July 2017, the shocking diagnosis of breast cancer arrives via a routine mammogram and she enters the next phase of ill-health, but this time with the loving support of KT and Freddie. She records her journey through this cancer, primarily to help others, who are experiencing cancer, and their supportersand loved ones, but in doing so she also reaches out to all of us who care about the rare life story of a fellow human being.

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You are here:Home>Housing>Housing grants and schemes> Repair and Leasing Scheme

Repair and Leasing Scheme

• Introduction
• Rules
• Rates
• Where to apply

Introduction

The purpose of the Repair and Leasing Scheme is to bring vacant properties in need of repair, back into use for social housing. The scheme is aimed at owners of vacant properties who cannot afford the repairs needed to bring their property up to the standard required to rent it out.

However, under a pilot expansion of the scheme, property owners of certain categories of buildings do not have to meet the requirement of being unable to afford or unable to fund the repairs. This applies to the following categories of properties:

• Vacant commercial units
• Vacant units associated with a commercial unit, for example, a flat over a shop
• Vacant institutional buildings
• Unfinished developments, which have been vacant for a significant amount of time

If your vacant property is suitable for social housing, the cost of necessary repairs is paid up-front by the local authority or approved housing body (AHB). You then lease, or make the property available, to the local authority or AHB, who will use it for social housing. You will get an agreed rental payment from the local authority or AHB and the value of the repairs will be gradually offset against this rental payment over a specified period.

The Department of Housing, Local Government and Heritage has information about the scheme.

If you notice a vacant home in your area, you can report this to your local authority using the online form on vacanthomes.ie. The local authority will investigate and, if appropriate, work to bring the vacant home back into use.

Rules

What properties are suitable for the scheme?

Certain conditions must be met for a property to qualify for the scheme.

• The property must have been vacant for at least 12 months before you apply to the Repair and Leasing Scheme. You will need to provide proof that it has been vacant for this time.
• There must be a demand for social housing in the area.
• The property must be assessed as being suitable to provide social housing .

Repairs

If the property meets these requirements, staff of the local authority or AHB will inspect it and provide you with a checklist of the repairs that are necessary to bring it up to the standard required. These requirements may vary in each local authority. But when the repairs are completed, all properties must:

• Be in good structural condition and subject to inspection by the local authority or AHB
• Comply with the minimum standards for rented houses
• Have a Building Energy Rating (BER) certificate

All properties must be furnished and include certain appliances. There is more detail about this in the Department’s information on the scheme.

Arranging the repairs

You can arrange a contractor yourself to carry out the repairs. If you are not in a position to do this, the local authority or AHB can engage a contractor instead. You will need to give formal written permission to the local authority or AHB to arrange for works to be done on the property.

If you are arranging a contractor yourself, you must list out the works to be done and get a quote from the contractor. This must be agreed with the local authority or AHB before the work starts. The contractor must be tax-compliant and be able to provide evidence of this on request.

When the work is finished, you should get an invoice from the contractor and give it to the local authority or AHB, who will arrange a site visit to check that the work meets the required standard.

If all is in order, the local authority or AHB will pay you the agreed amount to settle the contractor’s invoice. You will need to provide a receipt from the contractor.

Direct lease arrangement or rental availability agreement

Under the Repair and Leasing Scheme you can agree to make your property available to the local authority or AHB for social housing through:

• A direct lease arrangement, or
• A rental availability agreement (RAA)

The main difference between the two options is that under a lease agreement the local authority or AHB is the landlord and looks after the tenant and the maintenance of the property. With an RAA the owner is the landlord and has these responsibilities.

The two options also have different maximum terms and rents available. Below see a table outlining the main differences between the options:

	Direct lease agreement	Rental availability agreement (RAA)
Term	5 – 25 years	5 – 10 years
Rent	80% of current open market rate less RLS offset for the repairs (85% for apartments with a significant service charge and 70% for properties under the pilot scheme)	92% of current market rate less RLS offset for the repairs (95% for apartments with a significant service charge)
Cost savings	• No rent loss due to vacant periods • No rent arrears • No letting fees • No advertising costs • No RTB tenancy registration charge • No day to day maintenance costs	• No rent loss due to vacant periods • No rent arrears • No letting fees • No advertising costs
Tenant management	Local authority or AHB is responsible and they are the landlord	Property owner is responsible and is the landlord
Property maintenance	Local authority or AHB is responsible	Property owner is responsible

To agree to either of these arrangements, you will have to prove that you own the property and that you are tax-compliant. You should consult with your finance or mortgage provider and get their consent before entering into the scheme (if applicable).

Agreeing a direct lease agreement

If you decide to lease your property directly to the local authority or AHB you will sign an Agreement to Lease. This indicates that you agree to the length of the lease, the market rent of the property and a schedule of the works required. You will also agree how the cost of the works will be recouped through the lease payments.

Agreeing a rental availability agreement

If you decide to make your property available using an RAA, you will sign an availability agreement with the local authority or AHB. This states that you have agreed to make your property available for a specific period, to people nominated by the local authority to be your tenants. And that you will maintain the property in a lettable condition.

Repaying the cost of repairs

The cost of the repairs will be offset against the agreed rental payment until the value of the works is repaid. The local authority or AHB will agree with you what the appropriate offset period will be in your case. The agreement will contain a clawback clause to ensure that the full value of the works will be repaid if the property becomes unavailable during the agreed period. Further information about the offset period and clawback clause is available in the Department’s information about the scheme.

Landlord and tenant arrangements

When the repairs are completed, your property will be offered to households who have been approved by the local authority for social housing. If you have agreed a direct lease for your property, tenants will sign a tenancy agreement with the local authority or AHB. The local authority or AHB (acting as the landlord) will manage the property and provide support to its tenants. These properties will not be available to tenants on the Housing Assistance Payment (HAP) or the Rental Accommodation Scheme (RAS).

If you have made an RAA with the local authority or AHB, the tenancy agreement is between you, (the property owner) and the nominated tenant. You are the landlord, and you have landlord’s rights and responsibilities.

Ongoing maintenance, repairs and other charges

Certain responsibilities apply whether you have agreed a direct lease or an RAA with the local authority or AHB. As the owner, you remain responsible for structural insurance, structural maintenance and structural repair. You are also responsible for paying management company service charges, if applicable, and any other charges for which you are liable, such as Local Property Tax.

If you have agreed a lease agreement the local authority or AHB is responsible for internal maintenance and repairs during the term of the lease. And at the end of the term, the property will be returned to you in good repair, except for fair wear and tear.

However, in the case of an RAA agreement, you will manage and support the tenants and maintain the property internally for the term of the agreement.

Selling the property

You can sell the property during the term of a direct lease agreement as long as you transfer the lease agreement to the new owner and notify the local authority or AHB in advance.

In some cases, the property owner may agree with the local authority or AHB to include an ‘option to purchase’ as a condition of the lease. This gives the local authority or AHB the option to buy the property during the term of the lease. Such a condition can only be included if both parties agree.

Rates

The maximum repair cost under the scheme is €60,000 including VAT. This can include the cost of required furniture, as agreed with the local authority or AHB.

The cost of the repairs will be offset against the agreed rental payment until the value of the works is repaid. The local authority or AHB will agree with you what the appropriate offset period will be in your case.

The amount paid to you will be agreed through negotiation with the local authority or AHB. The maximum to be agreed will be a percentage of the current market rent.

• For most direct leases this is 80% of the current market rent. However, it is 85% for apartments with a significant service charge and 70% for properties under the pilot scheme.
• For RAA’s it is 92% of the current market rent or 95% for apartments with a significant service charge.

Rent reviews will usually take place every 3 or 4 years.

Where to apply

If you are interested in the Repair and Leasing Scheme, you should contact your local authority for more information.

Page edited: 21 July 2022

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Castleknock – Repair and Lease