Are sexual abuse victims being diagnosed with a mental disorder they don't have? (The Guardian 27.3.19)

Are sexual abuse victims being diagnosed with a mental disorder they don't have? (The Guardian 27.3.19)

The Guardian newspaper (UK), Alexandra Shimo, 27/3/19

(In 2008 Andrea Nicki was wrongly diagnosed with BPD. She is seen here posing for a photograph in her home in Vancouver, B.C. on March 25, 2019.)

Suppose, for the sake of a thought experiment, that a new psychological disorder was discovered. It is supported by dozens of studies and recognized by some of the world’s leading psychiatrists and psychologists, but not by the North American psychiatric establishment. And let’s say the refusal to accept this new disorder had devastating consequences for #MeToo survivors.

That claim is asserted by a growing number of sexual abuse victims, psychiatrists and psychologists worldwide.

The disorder is called Complex PTSD. It was identified in 1990 by American psychiatrists studying the experiences, behavior and symptoms of sexual abuse victims and other patients who have experienced extreme trauma and neglect, usually at a young age. A decade later, new science – in the form of brain scans – revealed this was a distinct condition impacting certain areas of the brain.

While the condition is referenced and discussed in peer-reviewed publications, North America’s official Bible of Psychiatry – The Diagnostic and Statistical Manual (DSM) – doesn’t recognize its existence. The DSM determines how mental illness is defined, and is the key to insurance coverage, special services in schools, disability benefits and treatments.

Someone who is dealing with complex trauma will be told they are having a problem regulating their emotions
Sly Sarkisova, psychotherapist
This lack of recognition means it is difficult for sexual abuse victims who might suffer from it to receive the right psychological diagnosis.

Rather than being diagnosed with Complex PTSD, many will be misdiagnosed with Borderline Personality Disorder (BPD), says Sly Sarkisova, a Toronto-based psychotherapist who specializes in trauma.

BPD and Complex PTSD are different disorders, but have similar symptoms. But one major indicator sets them apart: the latest research shows that BPD is 55% inherited whereas Complex PTSD is not caused by genetics but prolonged exposure to traumatic events, usually in childhood. While BPD is defined primarily by risk-taking symptoms (such as suicidality, impulsivity, self-harm, anxiety, emptiness, difficulty with relationships, and extremes of volatile emotion), Complex PTSD patients tend to be less impulsive, frantic, unstable and less likely to engage in self-harm, according to a 2014 study in the European Journal of Psychotraumatology.

This misdiagnosis affects sexual survivor more than anyone else because they commonly display the psychiatric symptoms common to both disorders, such as anxiety, mood swings, depression, emptiness and displaced anger. As a result, “Someone who is dealing with complex trauma will be told that they are having a problem regulating their emotions,” Sarkisova explains.

This means that sexual abuse victims have to wrestle with receiving a BPD prognosis that is pejorative and stigmatising (they are told their personality is “disordered”; they are called “difficult”; and as the condition can’t be cured, some psychologists avoid treating them.)

“The borderline diagnosis for sexual abuse survivors is nonsense and misleading because it suggests that the problem is within the personality of the survivor rather than a result of what has happened to them,” explains Gillian Proctor, program leader of the psychotherapy and counselling master’s program at The University of Leeds and a clinical psychologist in private practice.

For others, it’s political. BPD has become associated with a “parody of supposed feminine characteristics,” explains Glyn Lewis, the head of psychiatry at University College London. “BPD is a label that is often misused and applied especially to women, or people who were assigned female at birth, to pathologize them for emotional expressions of suffering,” Sarkisova says.

‘Little care and compassion’

Jill Greene, 57, is a survivor of sexual abuse who lives in England. (Her name was changed for anonymity.) In 1993, she was diagnosed with BPD. A psychiatrist made the assessment after a 20-minute interview and questionnaire, and the revelation of incest by her father, who began molesting her when she was four. It was a misdiagnosis, she believes. Several other medical professionals have also called it a misdiagnosis, she says, including a psychologist and psychiatric nurse.

For the past 25 years, she has been trying to have the BPD label removed from her medical charts and replaced with Complex-PTSD, but has been told it is not possible unless the original psychiatrist agrees. He refuses.

Greene’s situation is not unusual, according to Dr Laura Wood, a mental health campaigner. In North America, there is little hope of re-diagnosis with Complex PTSD because therapists are reluctant to diagnose patients with a condition that isn’t recognized by the DSM.

There is little hope of re-diagnosis with Complex PTSD because therapists are reluctant to diagnose patients with a condition that isn’t recognized by the DSM
In the UK, where the DSM doesn’t apply, it is theoretically possible to change a psychiatric misdiagnosis. “But it depends on how open-minded one’s particular psychiatrist and whether they are interested in opening a dialogue with the patient,” Wood says. “If a patient has a BPD diagnosis, then medical professionals, like everyone else, are likely to assume they are ‘difficult’ and be less open to having that conversation.”

The misdiagnosis has affected Greene’s ongoing medical care. She’s been prescribed a dizzying compendium of psychotropic drugs – none of which seem to work and some of which cause side effects. She has attempted suicide several times, and feels she has been further traumatized by the mental health system.

“There is little care and compassion for me, a person who has managed to survive the most unimaginable horrors a child and adult could go through,” Greene says.

Greene has been told by a psychiatrist that she is psychotic and can’t be cured. Two years ago, when she complained about the sub-par treatment she received, she was told she lacked insight into her illness by another psychiatrist.

As a mental health advocate, she has extensively researched the psychological impact of sexual abuse. She believes trauma therapy – including a type of processing technique called Eye Movement Desensitization and Reprocessing (EMDR), available through the NHS – would be the most helpful for survivors like her. But as long as she is diagnosed with BPD, she won’t be meet the criteria to access it.

‘It was sexist’

Concerns about the misdiagnosis of sexual abuse victims surfaced early on. BPD was added to the DSM in 1980, and to the UK’s International Classification of Diseases (ICD) in 1996.

As these changes were happening, professor of psychiatry at Harvard Medical School Bessel van der Kolk and Harvard professor of psychiatry Judith Herman began to wonder if the developments were correct. What if these patients didn’t have disordered personalities, but were suffering the psychological consequences of childhood abuse?

They began to interview male and female patients with a BPD diagnosis and published their findings in 1989 in the American Journal of Psychiatry. Their hunch proved right: 81% of patients diagnosed with BPD reported severe child abuse, including sexual, and/or neglect, usually before the age of seven. Van der Kolk and his team proposed that these people be re-diagnosed as having Complex PTSD.

For this to happen, the American Psychiatric Association would have to add Complex – PTSD as a new diagnostic category to the DSM. Van der Kolk and his team travelled to New York in 1990 to present their case to Robert Spitzer, one of the founders of the DSM and professor of psychiatry at Columbia University. Victory seemed in sight: in 1993, the American Psychiatric Association’s PTSD committee voted to accept Van der Kolk’s changes and add Complex PTSD to the next version of the DSM.

Twenty-six years later, nothing has happened.

Our field was dominated by men, and the men were seeing these women as ‘difficult’
“It was sexist,” argues New York-based Katherine Porterfield, a child psychologist at New York University’s Medical School. “Yes, this was happening to women because they are more likely to be abused, but it was also because our field was dominated by men, and the men were seeing these women as ‘difficult.’”

Those attitudes may have impacted the science: many are reluctant to further explore a psychological condition that isn’t recognized in North America, explains Audrey Cook, a Vancouver-based family therapist who has worked with sexual abuse victims since 1994, so instead these patients are labelled “difficult to treat”. Without research money, there are no studies on Complex PTSD cure rates or most effective treatments.

Dr Van der Kolk, who went on to become one of the world’s leading trauma experts and the author of the New York Times bestseller, The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma, says that misdiagnosis is now the norm. “The diagnosis determines the treatment that you can get, what insurance companies will pay for”, he explains. “As long as Complex PTSD does not exist, [medical] insurance companies will not reimburse you for [psychological] treatments that might work.” Instead, he argues, “patients are likely to receive pejorative diagnoses and labels that make their lives only more difficult”.

‘It’s easier for the world to flush us down the toilet’

“It’s powerfully and deeply ironic to me that women who experience profound trauma [ie sexual abuse] are pathologised as having a personality disorder,” explains Torontonian freelance journalist, artist and resilience coach Lisa Walter, 50, a sexual abuse victim who says she has been misdiagnosed with BPD. “I think it makes it easier for the world to flush us down the toilet.”

Historically, a BPD diagnosis was made if women were considered resistant to treatment and on the “borderline” of psychotic. Later, the incurable part of the disorder was explained through genetics. Although the modern-day definition does not mention psychopathy or sociopathy – which are different psychological disorders – the term is still used by some therapists and the public to imply someone irrational, inconsiderate and beyond control.

However, psychiatrists and psychologists in UK and North America are divided on the BPD diagnosis question. Some, like Dr Proctor, believe the label is never helpful, especially for sexual abuse victims who she believes are actually suffering from Complex PTSD. Others, such as Dr Choi-Kain, director of the Massachusetts-based McLean Hospital Borderline Personality Disorder Training Institute, believe they are separate conditions: comorbid, yes, but a person can suffer from both.

“When you tell [BPD patients]: ‘this is something millions of people have; you are not alone; there are good treatments and outcomes’; it’s a really positive, clinical message,” Dr Choi-Kain says.

But because studies have linked BPD to increased criminality, it has meant that some sexual abuse survivors won’t disclose what has really happened to them to mental health professionals for fear of being diagnosed with it.

For a long time, Andrea Nicki hid that she was sexually abused as a young child by an adult male family member. “Normally I’m reluctant to talk about sexual abuse because as soon as you say it, people think BPD,” explains Nicki. “They think she’s unstable, she’s got a personality disorder.” Then, in 2008, the Vancouver-based poet and business ethics professor revealed it to a psychiatrist she had just started seeing.

He diagnosed her with BPD even though she did not fit the BPD psychological profile: she lacked most of its symptoms except anxiety and minor depression due largely to financial troubles. A misplaced laugh (when her psychiatrist said “I really care for you”) might have tipped the balance: it prompted him to write down she was emotionally volatile.

‘Stuck in individualising, pathologising diagnostic ghettos’

A number of scientific developments have improved the understanding of Complex PTSD. Thanks to growing interest and funding for neuroscience and neurobiology, there has been an explosion of scientific imaging tools, such as Functional magnetic resonance imaging and electroencephalography, that have allowed scientists to peer inside the brains of Complex PTSD patients. The scans have allowed scientists to determine which parts of the brain are impacted by prolonged trauma, an advancement useful to trauma therapists hoping for possible cures.

Still, misdiagnosis remains common and impacts the success rate of psychological treatments, according to Van der Kolk. Complex-PTSD usually requires different treatments from those given to patients with BPD. Sexual abuse should be treated with some form of trauma-related therapy, Van der Kolk says, while BPD requires learning to control one’s aggressive urges, improve one’s relationship with others, moderate difficult emotions and compulsive behaviours.

Once misdiagnosis occurs, a patient can face stigma from the public and health care professionals
Once misdiagnosis occurs, a patient can face stigma from the public and health care professionals. In a 2015 study in British Journal of Clinical Psychology, an actor was videotaped having a panic attack. When doctors were told she had BPD (she didn’t), they rated her problem as worse and gave her less hope for recovery.

Lisa Walter, the Toronto writer, was diagnosed with BPD in 2008 after going through a depression and a period of self-harm. She too is a survivor, molested by a neighbour at eight and raped at 21. After diagnosis, she researched the condition, and found some of the symptoms did not fit. Her psychiatrist downplayed her concerns, and told her not to protest, because the BPD diagnosis was the only way of accessing a free, six-month course combining several therapies.

But with the BPD diagnosis on her medical chart, medical professionals approached her differently, she said. Nurses seemed less compassionate when she self-harmed. An ER doctor appeared irritated by the diagnosis and attempted to stitch up a self-inflicted leg wound without an anesthetic.

Her BPD diagnosis also lead to dismissive treatment away from medical situations. While giving witness testimony in a case alleging police brutality at the 2010 G20 Toronto summit, the defense lawyer used the BPD diagnosis to humiliate her, holding open a book of mental health disorders and suggesting that because she had it, she had behaved irrationally angry and aggressively at the protest. (She later sued the police and they settled.)

“As soon as you say BPD, people think irrational, angry woman,” Walter says. “There are extremely negative connotations with that phrase.”

In the UK, the situation is changing, albeit slowly. Last year, the National Health Service formally recognized Complex PTSD as a psychological condition. Preliminary versions of the UK’s Bible of Psychiatry, the ICD-11, also include it and most expect the final version, scheduled for publication in 2022, to do the same.

However, some UK therapists are still skeptical. “The new ICD-11 diagnosis of Complex PTSD was expected to revolutionise how we see and treat patients,” explains Dr Jay Watts, a clinical psychologist who has written extensively about Complex PTSD. It does not, she says: the diagnostic criteria are “so limited” that most people who have Complex PTSD will not qualify and instead be “stuck in individualising, pathologising diagnostic ghettos”.

In North America, there are still no plans to include Complex PTSD in the DSM. Research into effective cures for sexual abuse survivors and other Complex PTSD patients remain stymied by the institutional rigidity, misdiagnosis and lack of funding.

“Survivors of trauma and sexual violence should get appropriate support,” Wood says. “They should be treated with care and respect, not shamed and stigmatised further by this dehumanising label.”

J

It is with ongoing grief and sadness that I post here that J, my partner, for whom was also a “carer” (part time, I guess), unexpectedly and suddenly passed away at the end of October last year (2018).  It was a natural cause, a cardiac arrest. I have to type this because she was often suicidal, and we always expected her to die by her own hand. I was with her and I believe she was dead by the time I gave her chest compressions and before the paramedics arrived, who then worked on her for nearly an hour.  Over the last few years she suffered more and more from physical and mobility issues.  She had excessive swelling in her legs which would leak from ulcers, very recent care from visiting nurses didn't solve the issue.  I believe her weight gain was more likely to be lymphodema (sp?) across her whole body, plus arthritic knees, it's difficult to for me say the that her obesity was due to diet or lack or “sedantry” lifestyle – I can't reconcile that she used to be anoerexic and bulimic and yet died so overweight (she would hate that I would be sharing this).  I still believe the biggest negative changes were caused by anti-psychotic medication.  Extra pills were given to prompt her thyroid, and an all too late radical change to meds was kept at a slow pace by the psychiatrist.  It's amazing that she hadn't succeeded in killing herself before now, but this is little consolation that she still died at 41.
She was a beautiful person and was buried locally in a touching ceremony.
There's so many other things I might need to share but it's difficult to stay the right side of “appropriate”.  This blog was meant as a protest against poor mental health care, I had an agenda, but mainly it was often, in subtext, about J's struggles and my need for solidarity in alienating, disempowering situations.  After cycles of numbness and acute sadness, I'm finally entering a sort of an angry phase – I step back and I see myself blaming everyone and myself for the narrative which lead to her death.  In the past I have been unable to be completely honest about the difficulties of being a carer, for fear of being unfair or hurting J, but now the wider story may never be told because it overlaps so much with her living relatives and friends.  I've been clumsy with confidentiality (this tumblr/blog overlaps with my other accounts), which means these thoughts might be read be people from J' life to whom they might be taboo.  A relative, helping to clear her flat, decided it was very important to shred her copies of medical notes – I assumed that this was regarding her history and a need to protect the rest of the family from secrets shared with MH professionals, but it's difficult to get a direct response. 

It's horrible and difficult.  I've inherited her cat.  In my own dark moments, it's clear how she kept J alive – even if it was purely “if I go, who will look after her?”.
Sorry that it took me so long to say anything about J's passing – it still feels like she died yesterday (my father also died four weeks later), but I didn't want anyone following this blog (which is mainly a news archive) to think that I was still J's carer, or partner, because she is no longer alive.

In the end, I don’t believe J stood a chance at ever having a normal life, and she certainly did not deserve the suffering, mentally and physically.  It feels horrible to try to sum up this.  I’m not sure why I’m trying.  Thank you for reading,


Stay strong.  It's all about “quality of life” (or something like that).

Tumblr and Twitter Feeds

Hi, I'm finding it much easier to update with links and content straight to Tumblr and Twitter than blogger at the moment, so please check out those feeds.

failingmentalhealthservices.tumblr.com

and 

@FailingMHblog

( or https://twitter.com/FailingMHblog )  on Twitter.

Children "denied mental health support" (BBC News Health 28.5.16)

http://www.bbc.co.uk/news/education-36398247


Edit: Link to Children's Commissioner report:
http://www.childrenscommissioner.gov.uk/sites/default/files/publications/Children%27s%20Commissioner%27s%20Mental%20Health%20Lightning%20Review.pdf

Article text 11am 28th May 2016 -- BBC Health ---

Children 'denied mental health support'Thinkstock

One in 10 five-to-16 year-olds have a diagnosable mental health condition

A total of 28% of children referred for mental health support in England in 2015 were sent away without help, some after a suicide attempt, a report says.

The Children's Commissioner's review of mental health services also found that 13% with life-threatening conditions were not allowed specialist support. 

This group included children who had attempted serious self-harm and those with psychosis and anorexia nervosa.

A government spokesman said no-one should be sent away in need.

The commissioner obtained data from 48 of England's 60 child and adolescent mental health service trusts.

One trust in north-west England said it focused resources on the most severe cases. 

'Russian roulette'

There have been concerns in recent years about the patchy nature of services offered by child and adolescent mental health trusts (CAMHs), with many seemingly unable to cope with local demand.

And school teachers and heads in some areas have highlighted the growing mental health need amongst pupils which are having to be met within schools.

---

'Frightened the living daylights out of me'

Ellie Fogden, now 19, sought help when she was 16:

I did not become ill immediately at 16. For a number of years, I felt quite down, so to speak.

It was constant worrying, pressure from school, and my own body image.

I got to a point where I had had enough. I am waking up every day and I am not wanting to be here.

I self-referred to a local counselling service and I was on a waiting list for about three months and then started sessions. The counsellor was very worried and she referred me to CAMHs.

I had to go to the doctor to get a referral and it took about three to four weeks to get a session. I was in there for about three hours and I was just bombarded with so many questions. Some of them I didn't have the answer for because I didn't understand what was going on in my head.

I wasn't taken seriously enough. Some of the questions were dismissed as - it is not that bad, people have it worse. For me, it felt awful. There was no compassion which made it so much worse.

I didn't go back for another CAMHs appointment. It frightened the living daylights out of me. I finished counselling at this independent service. I wasn't great but wasn't as bad.

As I have grown older, it has just gone into a downward spiral where I am currently worse than I was when I was 16, with depression.

---

The review, by commissioner Anne Longfield, aimed to cast light on local weaknesses so provision can be improved, and more young people's needs be met.

She told BBC Radio 4's Today programme that over the past year, she had heard from a "constant stream of children, parents and professionals" about their inability to get help when they really need it.

They go to their GP who refers them to specialists, but the specialists then say their conditions are not serious enough, she said.

"There is a gap emerging between the help and support that GPs can offer and the specialist services," Ms Longfield added.

"I don't yet know quite why they are being turned away but certainly being turned away or put on a waiting list for up to six months is clearly playing Russian roulette with their health."

Missed appointments

The average waiting time for those accepted for support ranged from 14 days in a trust in north-west England to 200 days at one in the West Midlands.

More than a third of trusts, around 35%, said they would restrict access to services for children who missed appointments.

However, the report notes that children and young people are known to have difficulty in attending appointments for many reasons.

Ms Longfield said trusts have told her there was "too much demand" for their services.

"There is more awareness, more people coming forward for help," she said.

"But actually this is about recognising the terrible conditions children are in and looking at how their local systems can respond. Clearly in some parts of the country, they are doing the job much better than others".

Natasha Devon, formerly the government's mental health champion, said in order to identify problems in the early stages, it was necessary to look at the root causes.

"Anxiety, for example, is the fastest growing illness in under-21s, and we need to look at what's happening to young people - the culture and the society they live in, the pressures that are on them.

"Rather than medicalising what is actually just a response to what is happening to them, we need to look at the environment they are in."

'More compassionate'

James Morris, the Conservative MP who is chair of the all-party group on mental health, acknowledged that problems had been building up in the system over many years and a "fundamental transformation" was required.

"It is unacceptable that somebody who's suffering from a serious mental health problem should find themselves in a situation where they can't get access to care," he told the Today programme.

"We do need to move towards a more compassionate system for children and young people but the transformation is going to take time. It's going to require additional investment; it's going to require better commissioning on the ground."

An NHS England spokesman said: "While the data in this report does not substantiate the conclusions drawn, it is clearly the case that CAMHs services need to expand and the additional £1.4bn pledged will help us to do that."

A Department for Health spokesman said: "This investment is just beginning and is creating new joined up plans to improve care in the community and schools to make sure young people get support before they reach a crisis point."

Local bed made available :)

Yesterday afternoon we got a call and by evening J was admitted to one of the local wards. Despite my reservations about this particular unit, after the possibility of being sent too far from home, it feels like she’s landed on her feet. Some of the local wards have really old dorms and shared facilities, but in this ward she gets her own room with ensuite shower/loo, which helps her OCD and anxiety in general. I was pretty surprised when she arrived, they were already talking about care plans (and even wanted my input!). Naturally there’s the odd hiccup when it comes to acquiring the right medications, but hopefully this stay will have a less bumpy start than others have.


Phew.

No beds in whole of country (J's care update)

Several days in and we're still waiting for an acute care bed in hospital for J (mental health related) ... there are apparently "no beds" in the whole of the country, and a queue of outpatients in front of her. 7+ hours wait in Urgent Care (A&E, EDU at LRI) on Friday night just to see the right professional (Crisis Team) after the CPN couldn't get through on the phone to make a referral in the day. This is when you are already "in the system". 

(Leics. UK)

(I'm behind on synching this blog with Tumblr - please check my Tumblr and Twitter accounts for recent updates, MH news and links etc.)

http://failingmentalhealthservices.tumblr.com

and

https://mobile.twitter.com/failingmhblog   ( Twitter @FailingMHblog )

Updates on Tumblr and Twitter

This is just a quick reminder to anyone glancing over this blog that sometimes I post a little faster to Tumblr and then mirror the better posts on here (Blogger) when I get to a PC. This is partly because the apps I use for Blogger on the iPad are just atrocious when in comes to editing or pasting content.   I have less problems with Tumblr (which in turn can be convolted in a PC web browser).

http://failingmentalhealthservices.tumblr.com

Sometimes I growl on Twitter as well.
https://twitter.com/FailingMHblog
( @FailingMHblog )

Thanks for reading.

Teen who thinks he is in prison can leave psych unit (BBC 6.3.16)

Teen who thinks he is in prison can leave psych unit 

BBC Health 6.3.16

http://www.bbc.co.uk/news/uk-england-london-35739304

-----Text follows in case BBC re-edits story ----

Matthew Garnett: Teen who thinks he's in prison can leave psych unit

PA

Matthew Garnett is staying on a ward that is unequipped to care for him, his family said

A 15-year-old with autism who believes he is being held in prison after being sectioned is to be moved to a treatment unit, following a campaign. 

Matthew Garnett was removed from his home in south London in September after attacking his father.

He was placed in a unit normally used for short-term emergency admissions, resulting in his family campaigning for him to be moved.

NHS England said he would be moved within weeks.

'Six-month jail sentence'

It said Matthew would be transferred from the psychiatric ward in Woking, Surrey, to St Andrew's Healthcare in Northampton, which specialises in treating patients with autism.

Writing on petition website Change.org, his mother Isabelle Garnett said: "For the last six months he has been denied this, trapped, alone, in a place unequipped to look after him."

"What I was promised would be a six-week pit stop has become a six-month jail sentence," she continued.

PA

Matthew's family started a social media campaign to try to help their son using the hashtag #makeroomformatthew

His move has been held up by other patients awaiting transfers out of the facility, although to date more than 150,000 people have signed the family's petition calling for Matthew to be taken off the psychiatric ward.

His father Robin Garnett said he now wanted to see words become actions.

No admission date

Matthew "thinks he's in prison and is being punished for attacking us," he said.

His son has learning difficulties, attention deficit hyperactivity disorder (ADHD) and "like a toddler" is unable to control his emotions, Mr Garnett added. 

A spokesman for NHS England said: "We have every sympathy for Matthew and his family and we understand that this has been a very difficult time.

"It has been confirmed that Matthew will be moved to St Andrew's, where he will be able to receive the specialist care that he needs. We anticipate this will happen in a matter of weeks but cannot confirm an admission date at this point."

Mental health beds search 'a scandal' BBC

 Mental health beds search 'a scandal'  BBC
 11.2.16
http://www.bbc.co.uk/news/health-35521180

We live in the East Midlands and J was offered a bed in Essex, and she was told that seven other outpatients were queued to be admitted to the Leics unit.  After a days wait she gained access to the Leics unit.

J’s care update - Leics County Crisis Team refusing to assist

I think it was on Tuesday, but I'm getting confused about the days. Today is Thursday.  On Tuesday, J asked the ward consultant if she could discharge herself and come home (to be with her shelves of books and Lucy-cat).  She was an voluntary-informal patient.  The consultant agreed to her leaving on the grounds that she would accept support from the Crisis Team (Acute Care, Home Treatment, Recovery Team, or something which doesn't actually have the word "crisis" in it, but absolutely everyone, including themselves, still call them the “Crisis Team”).  We wait most of the day on the ward for the Early Discharge / Crisis Team to arrive (after several phone calls from nursing staff, possibly to a building next door).  As always, they did not have the best people skills, as always, only one talked.  They certainly didn't like me in the room prompting J (I pushed back a bit this time).  They weren't happy with the fact that J had recently ligatured and that her meds had been put up suddenly.  J wanted to come home partly because day-to-day care needs were not being addressed (phobias, OCD, leg ulcers, diet, sleep).  The Crisis Team told us that they wouldn't be providing support because J was too much of a risk.  We were stoic and reflected upon accommodating for the randomness of the Crisis Team’s appointments and logistics in the past (i.e. they turn up when they want, they can’t find J’s address and on at least two occasions just give up).  I don’t think they liked that either.  I think that they may have been trying to force the hand of the ward.  Whilst I sympathise with the Crisis Team’s position, and am pretty worried about her safety at home, this doesn't help J, who has had the blessings of the ward consultant to lead her own care and return home.  I too would have preferred J to stay in longer so that they could monitor the meds change, but I also welcome being in the same town as her and not having to ferry supplies, fix mobile phones, cat-sit without an end-date.  A nurse told us that the team had then told them that J had “declined” their help.  Which was simply not the case at all.   Apparently phone calls were being made and arguments had.  The opinion here was that they couldn't be bothered with the paperwork and had already decided to reject J’s referral before talking to J in person.  End result: we pick up meds and get a taxi home and J’s CPN is expected to fill in any gaps.  What I like about this scenario is that the Crisis Team managed to irritate everyone and lie to other professionals in a way which surpassed expectation. Astonishing.  

J is saying that the strength of the voice has lessened with the use of a new anti-psychotic.  Already her PA has started working with her again, and we've seen her GP.  Naturally there’s a few issues about who’s in charge of prescribing the new meds (deferred to local CMHT shrink, not GP), but J was so desperate to leave hospital that we’re seeing this as a minor complication.  I'm pretty baffled about the whole situation.  Whilst she was at the unit she never even saw a care plan.  

Is she better than she was? Probably.  

Is she safer at home than she was on the ward?  No idea.

A return to hospital (J's care, update)

J's back in hospital.

At some point around two weeks ago, she started begging to be kept safe.  On the 28th January (also my birthday, she gave me presents at midnight the night before cos she's smart like that) she was finally admitted to my least favourite MH unit. In saying this, I don't have any to compare it with, and I hoped that when they said that there was a queue of seven other outpatients in the county needing a bed, that she would be sent somewhere else in the country.  Looking on the bright side, at least she is only two bus rides away for me and perhaps three or four for her father. 

Over the last year she has mentioned a disconnected whispering chorus of voices, but now she is talking of specific presence, a male, who shouts terrible things at her.  Bizarrely, this took away some of the fears we had that if she was admitted again that she would be sent away for some sort of year long therapy for suicidal BPD-ers.  It's a screwed up world when you think a psychotic episode might bypass institutional prejudice about personality disorders.  The consultant on the ward still insists that she is BPD (despite J not corresponding to half the factors in a standard diagnose of BPD) and that this sort of thing is common.  I think someone, the CPN perhaps, has also suggested that voice hearing can be borne out of dissociation.  

J is currently a voluntary patient, not, as yet under section, which changes the control somewhat.  The one thing NHS MH hospitals seem to be able to do is alter medication in a safe-ish/controlled environment (I always have to remind myself of this).   Having seen, read and attended a few talks through work, regarding voice-hearing -none with much useful conclusion or explanation, mainly recommending empathy- it makes sense to me that the brain might close off one pathway in the mind when there is too much traffic of a single type, and yet the activity may still pass through another part of the brain, like the bit which interprets speech or perceives sound.  A little knowledge might be a dangerous thing, but although the voices are from a named presence, I don't believe J thinks she's listening to metaphysical devils of angels.  She seems to accept that it all comes from her, but scarily, she's starting to believe that the presence can affect/infect/permeate the rest of us (like the black poisonous miasma she normally imagines coming from inside of her).  She wants the voice to stop.  It shouts at her if she sleeps, so she's terrified of resting.  If we talk about the voice it tells her off and becomes unbearable.  

The doctors are tweaking her pills, throwing in a new anti-psychotic and so far there has only been a couple of minor screw-ups with the meds.  Any of you who regularly read this blog will know that one of my pet grudges is the fact that when a person is admitted to a local ward there's a good chance they will go without the correct (or amended) medication for at least 24 hours (when the need it the most) and that junior doctors, available at night (and weekends) don't want to take any risks which will challenge a consultant in the morning. Randomly, an error this time was junior doctors taking it upon themselves to reduce J's PRN meds*, because she wasn't using them efficiently, or effectively or some sort of nonsense.  This was put right immediately the following day by the consultant.

* ”PRN” (Latin medical gobbledegook “pro re nata”) These are the pills a patient can have throughout the day, "as and when" they need them; provided the appropriately qualified nurse can be found, with the right key for the clinic room and pills cupboard, and that they are able to log on to the dispensing computer, that the computer and network is working, that the pharmacy hasn't hopefully capped the meds on the dispensing list, and that they actually have those pills on that ward, and that the nurse in charge doesn't have some absurd reason to make the patient wait or try to talk them out of having medication (which was policy on one ward).  They'll say all this crap about self-empowerment, but they might not let you have same diazepam which you are trusted to take at home when you likes.  The responsibility here is on the patient to identify when they need top-up medication, and they should be championed and even rewarded for doing this, i.e. plucking up the courage, whilst in crisis, to ask a stranger for help, but no, like the twisted morality we apply to smokers, some nurses who have just met you feel that their platitudes will be more useful than sixty years of brain science.  But I digress.

She has her own room (very rudimentary) on one of the older wards, where they still have dorms, a handful of toilets and a couple of shower rooms.  Some of the staff seem to be okay, and yes there's a few turkeys in light blue I wouldn't trust with dog walking.  Some of them remind of beleaguered school dinner staff told to watch the special needs kids whilst the teachers go off for a smoke.  I'm winding myself up again.  

I visited her today. She was spaced out, more from lack of sleep, than from the pills (the meds barely touch her).  She was colouring-in mandalas in a book for distraction.  Apparently, the voice was loud and present, but we couldn't discus it because we made him angry.  It’s a “he” and he has a name.

(And yes, I'm hoping the voice isn't based on me.  I think that's a joke I'm making with myself.  I think.)

Poor thing.  The phone reception sometimes goes bad and drops.  That doesn't help.

I'm cat sitting at her place, Lucy-cat is being adorable, as always.

Argh.

___

After I finished typing this she texted me to call her.  She says she didn't plan it, or conceal the bag, but she managed to ligature herself around her neck using a plastic carrier bag and a door handle (plastic carrier bags have been banned from the ward).  She was found by a nurse and they cut it from her.  She says the voice wants to kill her, and she has to kill herself before he "breaks her down".  This is new to me.  Unfortunately, the MH unit is very poor at tackling anything resembling self-harm and suicidal behaviour, so I'm concerned where this may lead.  But, she's alive.  Honestly, I'm not making anything of this up, and I don't want to be sensational or to create a reaction, but things have to get better than this.  I'm angry with myself for typing these things as though they were the most normal things in the world.

Get this. The carrier bag had contained dressings for her legs, given to her by a nurse on a trip to a leg clinic, whilst she was still in the care of the MH unit.  She didn't think to declare the bag.  A suspicious person might suggest she had concealed it specifically to ligature with. The idea only occurred tonight - cue BPD argument about “impulsive” behaviour.  Her legs are another casualty of many years of medication related weight gain (severely aggravated several years ago on another ward in the same unit, when she sat up for 13 nights because she was too scared to sleep in a dormitory with other patients).  The sores on the legs get worse if she doesn't elevate them, like in bed, when you sleep.  And now she can’t sleep because the voice is telling her not to.  I can draw cause and effect flow diagrams, but eventually they stop making sense because there’s too many lines!

She’s safer in hospital. Not safe, but safer.  I keep being told this by friends and professionals.  

(Apologies for mistakes or typos, too tired right now)

Personal Complaint to BBC regarding suicide news article

Email sent my myself to Newswatch re. news item today 4/2/16 on the 6 O'clock News:

I take a keen interest in all mental health related news and welcome the mention of the shockingly high statistics of suicide being a major killer for men under 50, but an emphasis in the interview with a bereaved wife was on whether or not she thought the act of suicide was “selfish”. I’ve since watched a more balanced clip of the same interview on the BBC Health news feed and that question was not included. 
This was all used as an introduction to a story about Mersyside Mental Health Services investing in an “app” which can predict suicidal behaviour. There was an opportunity here to ask if people who ask for help are getting adequate mental health support, medication or counselling. Risk assessments of suicidal patients on wards is a very different problem to suicide in the community. Fortunately, helplines were mentioned, but the whole article was painfully clumsy, alienating to mental health sufferers and seemed to ignore anti-stigma advice given by charities in recent years.

Regards
(Name, number etc)

In-patient Suicide Under Observation Report (NCISH Manchester University 2015)

National Confidential Inquiry into Suicide and Homicide by People with Mental Illness (NCISH)
In-patient Suicide Under Observation
NCISH / University of Manchester 2015

http://www.bbmh.manchester.ac.uk/cmhs/research/centreforsuicideprevention/nci/reports/ipobsreport.pdf

I'm still reading this report.  There should be no suicides whilst under observation by mental health nurses.  Statistically damning.

A&Es hit by children's mental health crisis (Guardian 26.12.15)

A&Es hit by children's mental health crisis 

http://www.theguardian.com/uk-news/2015/dec/26/child-mental-health-accident-and-emergency-nhs?CMP=share_btn_fb

 The Guardian 26 December 2015

Teenager failed by CAMHS (Mail Online 4.12.15)

Fostered teenager killed herself after 'being raped by an older man', breaking up with her boyfriend and being called the wrong name when she met her drunken birth father

Daily Mail Online, 4 December 2015 

http://www.dailymail.co.uk/news/article-3346159/Fostered-teenager-killed-raped-older-man-breaking-boyfriend-called-wrong-met-drunken-birth-father.html

“Her adoptive parents, Carol and Ann Holmes, now feel she was ‘let down’ by social services, after she killed herself in November 2013, just five days after being dismissed [by CAMHS] as not at 'immediate risk’.”

NHS trust 'failed to investigate hundreds of deaths' (BBC 10.12.15)

NHS trust 'failed to investigate hundreds of deaths'
BBC News Health 10.12.15
http://www.bbc.co.uk/news/health-35051845

Own comment:

It’s so difficult to comment on this without sounding trite or wanting to link this up with my own agendas. Everything I’m reading and watching seems so familiar that it just generates a feeling of numb despair in me.

Outcomes, assessments and alienation

(As always, I reserve the right to delete this because it is a slanderous rant, but if you can't do that in a blog, then where can you?) ;)

I need to type here some angry thoughts about the complete fiasco that has been J's social care assessment and my carer's assessment by Social Services (edit: DWP). Although the ball has been rolling for a few weeks with regards to J being granted money to pay a personal assistant for weekly help (after most of a year of delays, hospital admissions and several telephone complaints), her forms are filled in with upsetting inaccuracies and distortions. Simple things like her challenging her BPD diagnosis and listing other conditions (OCD, eating disorder, depression etc) has been skewed into her appearing to lie to professionals about her diagnosis. This is fundamental stuff. These are supposed to be J's words with supplementary information from her professionals (remember that she hasn't had a regular shrink for four years, just a chain of anonymous locum doctors reading rushed short hand from the local Crisis Team and ward staff). That's just the start. But first, let's talk about me ...

Apparently, since I don't live with her, I did not qualify for any assistance (which I sort of expected, although I've lived at her house for most of the last two years, but why make me fill in the forms?) ; apart from £200 a year, for which I had to justify what I was going to spend it on (naturally). I pointed out that the mobile phone contract I have is essential for keeping us both connected in emergencies, when she is in hospital and so on, but apparently the DSS don't pay for such things and I was then expected, with no clues or example given, to come up with something more plausible. Maybe they wanted me to say "respite weekend abseiling" or something from a disability holiday brochure. I just don't know. If you don't specify, you don't get, apparently.

We weren't even given any leaflets introducing the assessments - because, apparently, the system has been changing so much that all info is out of date. (Isn't this always the case?) They offered me help with DIY and "finding work" - which was a misunderstanding about me not looking after my flat because I'm always with J and that I was looking for part time work for extra funds, but the way they phrase everything is so dehumanising. Apparently I did qualify for help from the Inclusion Support Service - possibly the most redundant and misguided of all the local teams (although not entirely their own fault, but their sole purpose seem to be to get people to join clubs and go to day centres, or to get them out of day centres - oh, the irony, because I used to meet with them in my old job when they'd introduce new service users to the mental health drop-ins). So many of these not-quite social worker roles can replaced with a Google search of local events and a bus pass for the client. Not to mention the fact that Inclusion policy is one of the most abused and misused ideas, implemented by councils to rapidly shut down any ongoing stable support people already have. It was a high point when the social worker mentioned ISS. I think we all laughed for a whole minute, and the social worker knew why.

We were both in an exposed position (having confessed to a mistrust of most professionals based upon experience of their prejudices and neglect). J was nervous about qualifying for care and how many hours of help that would cover.

J then suddenly started to express anxiety about finances and that she was worried about my own stress levels. You'd think that would help our case, i.e. vulnerable MH outpatient and her carer "at the end of tether" physically, emotionally etc. Back story: I've been avoiding benefits, it can be complicated when you are self-employed, but my design work only brings in a few thousand a year, not enough to cover rent. My dad has helped me a lot and when J was in crisis she would pay for things (taxis to hospital, day-today expenses, Lucy's cat food, shopping, whilst her benefits were cut when she was in hospital), and, yes, the occasional (okay, regular) bills top-up, which I think many couples do. Sometimes I would insist that I would pay her back (genuine embarrassment here about not being the "bread winner" and other nuclear family notions). There was another genuine, but private circumstance reason, for my abstaining from benefits, which I just can't go into here, but it made sense for many months. There never seemed to be a good time to get a part time or full time job because J was in and out of hospital, and I loathe the benefits system, and I rather enjoyed believing that I was "full-time self-employed", or "p/t s/e & carer" but the reality is that all focus on work is difficult when your partner is either recovering from a suicide attempt or planning her next one (and yes, I was/am anxious/depressed to the point that promoting myself to prospective employers would be a challenge beyond my ability). :-/ (Okay that sounds harsh on J, but even when she was self-harming in hospital, I was never convinced that staff were keeping her safe; advocacy and complaints can be exhausting too) And yes, I left my last job, just before a service contract change, partly to be more available to her.

Naturally, at some point, the shit hits the fan, as this way of living without even a modest regular income is unsustainable (although, as in a previous life-crisis, I was impressed at how far I've managed to get by on so little, and yet that means I'm taken so much financially from loved ones).

In a matter of minutes I went from being her full time (or p/t) carer to no longer being available in the daytime because I'll be at work, or looking for work. In fact, on paper, it has now been declared that I'm "no longer her carer" (although I can't recall that conversation being had between myself and the social worker, although I angrily dismissed another council worker who felt that giving me list of phone numbers for organisations, which I already knew about, counted as a successful "referral for support"). In a strange way, I have been cut loose, but I am in J's debt long term (financially and emotionally). With a little extra time and planning this might have been easier, or maybe this sort of break had to happen. And, yeah, Christmas is coming. But to say that your carer is sponging off you in front of a social worker could have had serious consequences (i.e. J being classed as "vulnerable" and myself being seen to take advantage). I need to be more grateful that I got out of that one without a mark against me. I need to be grateful of the clarity and honesty the situation provided. I am grateful. I was/am so sorry for the burden of that worry J was having.

But, crap, life is crap.

A worker from Rethink Carers Support later told me that I must apply for Housing Benefit immediately and was fairly fixated on me getting a form (when the web page was already in front me). I'm stubborn. Sometimes I just can't write demoralising things about myself in order to beg for money (I forget how stupidly proud I am, and yet so happy to take money from her and my family, but I guess it was an easier path). Instead, I have signed up to temporary work agencies and have had some help for this month's rent from my long suffering father yet again.

In summary, I was referred by a carers' charity for an assessment by Social Services (edit: DWP) as J's carer, and, that assessment process has forced me to walk away from that role (officially speaking). Isn't that a little sad? Like a sort of failure on the part of the system? It stings a little, because obviously I am still her carer and partner, and, depending upon the timing, I will always try to be there for her in a crisis.

So many bad and neglectful decisions were made by me this year because I was trying to "be there" for her and it all came crashing down when we were offered some help. Naturally, this has confirmed for me that most (if not all) contact with government agencies are poisonous and goal/agenda-filled, intelligence-insulting, affairs (God, that makes me sound pompous, but fuck it, I'm 43, it's like going for really shit careers advice or talking about poor exam grades with a headmaster). Somehow on paper, I am now just a shit who was living off J. (But we can sort that out, I think, because J and I are stronger than that)

Today she was talking about the mistake filled social care assessment form, prepared by the social worker, which still hadn't been amended, despite the social worker taking a sheet of notes from J (not returned, despite them being intended for discussion with her CPN, who was implicated as providing negative content - apparently his words were skewed also).

Just her mentioning the form has triggered a sluice of hate filled bile from me towards Social Services and towards myself (and perhaps a tiny amount towards her, for the timing, but it had been there bubbling for months and she was protecting me after all). Perhaps this is a turning point. J will be getting help now. The forms are "a means to an end" J says, whilst I rage and stomp about the injustice of prejudice from those who are supposed to help. But when will all this professional-to-professional (doctors, social workers, crisis team) Chinese whispers bullshit stop? We are like diseased cattle to them, waiting to be processed.

The whole thing, for me, has been utterly alienating. It was a nasty catalyst, like O'Brian in 1984 holding up the mirror to the emaciated Winston and then pulling a loose tooth out. Look at yourself. Shit.

Perhaps one day I'll try to explain things more clearly, explain the assessment process in a more useful way, but perhaps my frustrated testimony will also be useful as a snapshot or a lot of rights and wrongs which extend backward and forward from this cluttered point in time.

I think the word I'm looking for is "clusterfuck".

(Edit: 10.12.15 for typos)

Woman dies after winning court case to refuse dialisis (BBC 3.12.15)

Woman who refused treatment after losing 'sparkle' dies

http://www.bbc.co.uk/news/uk-34991931
BBC News 3.12.15

Own thoughts:
I really can’t help feeling that a whole mental health perspective has been lost here.   One wonders if it will have implications later upon the treatment of suicidal people, negative it terms of the right to self-neglect or positive it terms of asserting the rights of the patient.  I also think that the reporters and professionals are desperate to paint this person as somehow shallow, or apart from society, as though they were bound to materialism and looks to a fault, or perhaps to be respected, almost like a religious choice.  I wonder what the family feel?  Maybe more will come out, or it’ll just be dismissed as force of will vs. the hippocratic oath.  Did she have any counselling?  Was she made to feel guilty after overdosing, to the point that she felt she didn’t deserve care later and to the point that she despised any doctors telling her what to do?  I’m projecting a little here.  It overlaps in my head with doctors being baffled by actively suicidal, yet lucid, patients. There’s something missing here.  Somewhere between statutory care and personal needs, something has been lost.

Teens, suicide, self-harm and depression (BBC article 30.11.15)

'I was disconnected from everyone'
http://www.bbc.co.uk/news/health-34944454
BBC Melbourne 30.11.15 

An article focussing on teens from around the world fighting self harm and depression  with some alarming statistics about young suicide.

ITV Central News report on the Bradgate Mental Health Unit (26.11.15)

Bradgate Mental Health Unit (Possible) Ward Closure
Featuring myself and J.
Home recording with ipad (apologies for breathing sound)
ITV Central News (UK)
Aired: 26th November 2015 6.00 PM