Online Psychiatric Research Study with California State University

I have recently been working with Stephanie Price at California State University – San Marcos – in her work to develop a new scale in psychiatric assessments, for people with diagnoses such as Borderline Personality Disorder and depression.

The study is now moving into a new phase, and I was asked to share this invitation to participate in an online research study.

If you are a resident of the United States, are over 18, have a psychiatric diagnosis, and are interested in participating, please check out the details below.

California State University San Marcos

You are Invited to Participate in an Online Research Study

Scale Validation Survey (IRB Code Number: 893513-1)

A new scale is being developed for people with various psychiatric diagnoses including depression and borderline personality disorder. The purpose of this online study is to test the validity of the scale among people from diverse backgrounds. It is hoped that this work will lead to further research and potential clinical applications. This online survey will involve completing a series of questions for approximately less than 45 minutes.

You must be at least 18 years old, fluent in English, a resident of the United States, and diagnosed with a psychiatric disorder to participate. You are not eligible to participate if you participated in our recent interview study.

To participate in this online research study, please visit:

https://www.surveymonkey.com/r/FV7MTFL

To learn more about this research study, please contact the researcher, Stephanie Price (price049@cougars.csusm.edu), or the advisor, Dr. Heike Mahler (hmahler@csusm.edu).

The Latest Instalment Of BPD Series ‘Odd Socks’

The latest instalment of my series, Odd Socks, is now available to read on Channillo – the serialised literature subscription website. Monthly subscriptions to the site are available – the lowest of which is $4.99 (£3.40), and allows to follow any 10 series of your choice. Odd Socks is currently released quarterly, which means you can read it, switch it out for another series, then switch it back for the next release. It’s a reasonably priced, flexible way to read the work.

Here are some excerpts from the latest instalment:

“So, there we were, The Psychotherapist and I – sitting down, once a week, to get to the bottom of my newly diagnosed Borderline Personality Disorder. Employing the technique of Dialectical Behaviour Therapy, our sessions were like exercises in mental cartography, in which we attempted to map out the landscape of my mind – identifying obstacles, and avoiding traps. The one thing we never addressed, however, was the big question – what lies at the end of that road? That was for me to investigate, and discover for myself…”

“This, I learned, was the very essence of the challenge. I imagined myself to be a modern-day Indiana Jones – edging my way warily through my own internal Temple Of Doom, trying to anticipate the next swinging axe that would inevitably descend to knock me painfully from my feet. The content of the inner chamber was clearly of the greatest importance, if its access routes were so diligently sabotaged. And yet, I had no way of knowing what I would find in there. What could possibly be lurking behind that final, well-guarded door? “

You can read more from this instalment on the subscription site, Channillo, here.

 

Odd Socks – A New Literary Series About Recovering From Borderline Personality Disorder

As promised, my new literary series, Odd Socks, is now live on Channillo.

It’s the story of becoming unwell with Borderline Personality Disorder, and getting better, through understanding the illness, and learning to manage it. It’s told against a backdrop of global, national, local and personal events, interspersed with chapters detailing my understanding of how the various aspects of BPD intersect and impact daily life. I intend to release chapters quarterly.

Delayed Emotional Reactions In Borderline Personality Disorder

I’ve been doing pretty well lately, in terms of managing my Borderline Personality Disorder. I have, for the most part, been keeping everything on an even keel. Sure, there have been stressful situations and phases – but I have dealt with them using a variety of strategies, such as Cognitive Behaviour Therapy, and there has been minimal disruption. I’m not going to lie – it’s felt pretty darn good.

There’s always a ‘but’, though, right? Especially when it comes to BPD. This disorder is a sneaky bastard. It makes you believe one thing – then slaps you upside the head with another. It lets you regain your balance – then pulls the rug out from under you. It pretends to be cowed, and then you discover that it has been quietly plotting your downfall. Again.

I felt pretty calm and confident about going into a prolonged triggering situation last weekend. It was ‘Family Camp’ with a local scouting group, and it’s something we’ve done many times before for our children. The first time we did it, I was barely able to function during the weekend. Living in a tent, in a muddy field, with toilet and washing facilities shared by hundreds of people, and children getting their shoes all over the duvets meant I was incapacitated by overwhelming obsessive compulsive disorder. Living with many other families in a social setting for two days set off paranoid spirals which, in turn, set off extreme emotional reactions. It was a psychologically gruelling experience, but it was important for our children to participate.

Every year since then, we have attended this Family Camp, and every year since then, I have managed myself better. The improvement was so notable this year, that I was congratulating myself on how relatively unstressed I was in the run-up to the event, and when it was over, my husband and I both acknowledged how remarkable it was that I had survived the whole weekend without once touching any of the five bottles of hand-sanitiser I had packed. I had felt no rage, nor panic, only minimal paranoia, and had actually had a fairly pleasant time – lack of sleep notwithstanding. “Look how much progress I’ve made!” I exclaimed. I felt empowered, and somehow vindicated. All that hard work and uncomfortable psychological exploration had clearly paid off. Actually enjoying Family Camp was the reward.

Here comes the inevitable ‘but’. That relief did not last long. Returning home, I became highly irritable. I put this down to exhaustion – having had about 3 hours sleep in 48, thanks to the Cumbrian wildlife, and the fact that it never really seems to get properly dark in North-west UK in June. That must have been the explanation, because why on earth would I get irritable about camping after the fact? Two days (and much sleep) later, my irritability had not only not subsided, but it was now partnered with intense low mood, apathy, and extreme self-loathing. I noticed my husband began using his well-practiced ‘BPD-response-mode’ – taking steps to proactively defuse situations before I had a chance to react to them. Crucially, I noticed my voice had changed, too.

That’s something else I’ve become aware of in terms of BPD – my voice changes. It truly is the clearest indication to others that all is not well. It’s the closest thing there is to changing the colour of the bulb in the warning system – but it is entirely involuntary. I do not like my BPD voice. It’s tone is harsh and unforgiving – almost cold – and when I hear it, it doesn’t sound like me at all. That only adds to the feeling of disconnection that accompanies a BPD episode.

But, I digress. It’s now five days since we returned from the Family Camp, and I’m still in this BPD thing. It is clearly a delayed reaction to the triggering situation that I thought I had managed well. It shouldn’t surprise me that this happens – a main feature of BPD is emotional dysregulation, after all. I have yet to come up with an answer as to why I dealt with the situation in the moment, only to be blindsided when I got home. I can only think it is connected to the way in which I processed my reactions at the time. Was I mindful, or did I simply repress them? At this point, I really have no idea.

Where does that put me, and what does it mean? Well, it puts me back in The Pit, and it means that I am entirely disheartened. I thought I had earned more slack in the line, but it yanked me right back down to the bottom as soon as I tried to rise a little further. As a result of that, I am entirely demotivated. What’s the point of all that hard work and uncomfortable psychological exploration if I am never going to be free of this godforsaken condition? It’s all very well understanding it, and having an explanation for where it comes from, but what good is that if it doesn’t prevent it from chewing on my ankles?

Then there’s the physical aspect: the binge-eating and subsequent self-loathing, the increased skin-picking on my fingers, the stress-related digestion issues, and the disturbing lack of energy. All of these things combine to pile in on my already low mood. Gone is the feeling of achievement at having made it through the weekend without a meltdown. Gone is the feeling of being capable.

Oh, and I have to go to a formal ball tomorrow night. Hello, paranoia.

This whole bitter-tasting BPD feast is garnished with a layer of frustration – because as much as I rely on CBT strategies to get emotional spirals under control, I still don’t have the hang of using them to alleviate extreme low mood. Even after all these years. There really is nothing more ironic than having to go back to the drawing board – back to square one – when you have exactly zero motivation.

So, this is the point in my thought process where I take a deep breath, and look at all the pieces I’ve laid out on the page before me – because I work stuff out more effectively when I place it outside of my head. Maybe that’s why I’m a writer – it’s the quickest way to empty my overactive brain.

I’m back at the bottom of The Pit – how do I get out?

First things first: I’ve recognised that I’m at the bottom of The Pit. It sounds so simple and basic, but those that have been in there know that this, in itself, is noteworthy. The thing about The Pit is that, once you are in there, it is incredibly easy to forget that there is a world outside of The Pit. It is difficult to remember what it feels like to not be in The Pit – even after the shortest period of time.

Secondly, I have a desire to not be in The Pit. I don’t like it in here, and I don’t like who I become when I’m in here. This is also noteworthy, because it indicates that I have not yet lost the sensation of what it feels like to not be in The Pit. I have a sense of something that I want to get back to.

The combination of those two things tells me that, actually, this set-back is just that – a set-back. It is a temporary thing. They allow me to remind myself that I had been feeling relatively well for an extended period of time – perhaps the longest in a decade. This is something I can remain happy about. Like any chronic illness, when the frequency of episodes continues to decrease, continued recovery is indicated – even though those episodes still occur occasionally. Dismissing all of my progress because of one relapse is an extreme reaction in itself – a BPD symptom that exacerbates the downward spiral. I can stop that spiral here, and take control of this delayed emotional reaction.

And there it is – a small olive branch extending from my rational mind to my irrational mind. From the calm, zen little creature on one shoulder, to the chaotic, stroppy and explosively moody little Borderline Personality Disorder creature on the other. A shaft of sunlight hits The Pit, and illuminates a route by which I can clamber up to the top once again. The Pit is deep, and the route is long, but seeing the way out means I’m in a much better position now than I was an hour ago. That’s progress.

Bordering On Discrimination: Mental Healthcare & BPD In The UK and US

BPD magThis article was commissioned by BPD Magazine in December 2013, for their second issue. The periodical was the first ever printed magazine to specifically cover the subject of Borderline Personality Disorder, and launched in the autumn of 2013. Unfortunately – after publishing an excellent premiere issue packed with informative articles by mental health professionals, those diagnosed with BPD, and those caring for BPD sufferers – the magazine was abandoned by advertisers and was forced to fold before its second issue could go to print. It’s Founder and Editor, Neal Sutz, kindly gave his permission for me to publish my article – which he originally commissioned – elsewhere, so I am including it on this site to accompany my pieces on BPD.

Bordering On Discrimination: Mental Healthcare & BPD In The UK And US

As the old saying goes, “money makes the world go round”. Whether the subject is politics, education or health, everything boils down to the bottom line. But, in Western society’s scramble for global economic dominance, mental health has been left behind – even though it is the very thing needed to balance the books.

Since the introduction of the National Health Service (NHS) in Britain in 1948, the provision of healthcare in the UK and US could not appear more different. As the largest and oldest single-payer healthcare system in the world, the NHS was created solely to provide high-quality   healthcare that is mostly free, for every legal resident in the country. The provision of services is intended to be based entirely upon clinical need, as opposed to the ability to pay.

The service as a whole is governed by the NHS Constitution – a document that is non-negotiable and, in theory, cannot be changed by government without the agreement of those within the service itself – such is the status of the NHS as a veritable ‘jewel in the crown’. This constitution sets out clearly that patients have the legal right to begin their NHS Consultant-led treatment within 18 weeks of their initial referral – unless the patient chooses to wait longer, or it is deemed clinically necessary to do so. This waiting time guarantee is for both hospital-based and community-based healthcare, and if it is not possible to begin this treatment within that timeframe, alternatives are supposed to be   offered. Patients diagnosed with ‘urgent’ conditions, such as cancer or heart disease, are theoretically seen by a specialist more quickly. Waiting times are usually measured from the booking of the first appointment with a member of the Consultant-led team, and ends when treatment begins, or if no treatment is required after assessment. That is how the system is supposed to work.

While access to NHS mental health services can follow a number of different pathways – including health visitors, social workers and Accident and Emergency Departments of hospitals – if a UK resident experiences mental ill-health, their first port of call is usually their GP at their local Doctor’s Surgery. After an initial assessment by their doctor, a referral is made. Following the National Service Framework report of 2011, the NHS has shifted the provision of specialised mental health services into a community setting, so most patients find themselves working with a Community Mental Health Team. This can comprise of social workers, Community Mental Health Nurses (with specialist training),   pharmacists, counsellors and psychotherapists, psychologists and psychiatrists – with the psychiatrist usually being the senior member of the team. In theory, the approach taken today is of a multi-disciplinary nature – drawing upon skills and expertise from a wide range of departments and teams.

The Community Mental Health Teams (CMHTs) are tasked to work with people experiencing complex mental health conditions – including Borderline Personality Disorder – providing day-to-day support that allows them to continue living in their community. This approach is supposed to encompass the wider network of support available to the patient – specifically family and friends. In addition to the CMHTs, the NHS operates Crisis Resolution Teams (CRTs) who aim to treat people experiencing severe and acute psychiatric crisis and might otherwise require hospitalisation. These teams are intended to be available 24 hours a day and are expected to treat the patient in the least restrictive environment possible – preferably the patient’s own home, or nearby home-like setting. This team also establishes an after-care plan in an attempt to prevent recurrence of the crisis.

When referred for mental health assessment and treatment, these are the two main parts of those services that most patients would deal with. In theory, this is the point where a psychiatric assessment would occur, and treatment recommended and commenced. However, in the UK, the provision of mental health services is not uniform across the country in the way that most, basic physical health care services are.

If you gave birth to a child (complication-free) in the south of England, and later gave birth to a child (also complication-free) in the north of England, you would find that your experience with maternity services would be broadly similar. Appropriately qualified staff would present every choice and option at the necessary interval and offer guidance during decision-making processes. Medical appointments would be timely and undertaken by fully trained professionals, with additional treatments scheduled and completed, as required. Attempt to access mental health services in different regions, however, and you will find vastly different results. Not only can waiting times for mental health assessment vary wildly between regions, but so can the types of treatment being offered – with some regions failing to provide certain evidence-based treatments at all.

The reason for this disparity is the simple fact that, until recently, mental health was essentially a lower priority than physical health. As highlighted by the UK mental health charity Mind (www.mind.org.uk) this year, the NHS constitution – while iron clad in terms of physical ailments – gave no guarantee for access to psychological therapies, nor any stipulation on maximum waiting times for such therapies.

As part of their 2013 “We Still Need To Talk” campaign, Mind discovered that 1 in 10 people referred to NHS mental health services had waited more than 1 year to access talking therapies, with half waiting more than three months – far removed from the constitutional guarantee of 18 weeks. Three in five patients were given no choice in the type of therapy they were offered, and evidence was recorded highlighting the fact that ethnic minorities and vulnerable groups found it even harder to access the right services due to cultural or language barriers. Survey data collected suggested that a disproportionate focus was placed on the provision of Cognitive Behaviour Therapy, though rarely were enough sessions provided. In fact, 11% of people surveyed by Mind stated that they ultimately had to pay for the therapy they wanted, because it was not available to them on the NHS.

Campaigning for change in response to their findings, Mind state that the more desirable situation would be the inclusion into the NHS constitution of a guaranteed waiting time no longer than 28 days – less in the case of a psychiatric crisis. They are asking for a full choice of evidence-based therapies to be offered in every region, along with equality of access for all. Essentially, Mind are advocating for mental health to be given the same requirement of quality of care as physical health.

The UK government launched the Improving Access to Psychological Therapies (IAPT) Programme, which has been praised by Mind and their partners as a positive move, helping millions of mental health patients across the country. They state it does not go far enough, however. This position gained a lot of support and media attention and, in March 2013, the UK Department of Health announced the policy, “Making mental health services more effective and accessible.” With the soundbite-friendly tagline, “No health without mental health”, this policy set out the steps the government plans to take to address the issues specified by Mind and their partners, including:

  • Prioritising better access to services and decreasing waiting times;
  • Prioritising the reduction of mental health problems;
  • Including mental health in a new ‘national measure of wellbeing’, so it is given more weight during policy creation;
  • Providing £400 million over 4 years for improved access to psychological therapies;
  • Providing up to £16 million over 4 years to combat stigma and discrimination.

While this policy announcement seems like a victory for NHS mental health services and their users, it was recently revealed – through Freedom of Information requests – that the reality is actually very different.

Within the NHS, mental health services are administered across the country by 51 mental health trusts – each covering a different region. An investigation by the BBC (“Funds cut for mental health trusts in England” – Michael Buchanan, 12 December 2013) found that despite the government guaranteeing an increase to the overall NHS budget of 0.1% in real terms during their administration, mental health trusts have experienced funding cuts of over 2% in real terms in the past 24 months. This information was based on data received from 43 of the 51 mental health trusts operating.

Simultaneously, as trusts are facing funding cuts, separate data indicates that referrals to Community Mental Health Teams and Crisis Resolution Teams have increased by 16%. Looking forward, of the 13 mental health trusts that provided indicative budget projections for the coming year, 10 of them were bracing for more cuts.

So, while the UK government are ‘talking a good game’, the resources and policy changes that they have promised are not being seen in all UK communities, as intended. Quoted by the BBC, the Care and Support Minister, Norman Lamb, stated, “It is completely unacceptable for local commissioners to disadvantage mental health in the allocation of funds to local health services. This completely conflicts with the government’s clear position that there must be parity of esteem – equality – between mental and physical health. This must be a priority for NHS England to address.”

Mental health services in the NHS, while mostly free at the point of delivery, are caught in a perfect storm of policy-based circumstance, ultimately leading to many patients falling foul of the so-called ‘postcode lottery’. If you are fortunate enough to live in one of the relatively few regions with a stronger mental health trust, and you require mental health assessment or treatment, then your case is prioritised based upon clinical need and social circumstance – if, for example, you are very unwell and have young children or dependents, you are ‘fast-tracked’. You are, in brutally honest terms, a postcode lottery winner. Across the boundary line in the adjacent region, however, a patient in the same circumstances will likely not be as fortunate.

Where does this leave those in the UK diagnosed with Borderline Personality Disorder? This disorder is classed as a ‘complex mental illness’ due to the prevalence of related co-morbid conditions. The 2009 UK guidelines issued by the National Institute for Health and Clinical Excellence (NICE) specifically do not recommend drug treatment for Borderline Personality Disorder, unless it is deemed necessary for the management of acute crisis – in which case, it is recommended that drugs are only prescribed for a period of seven days. Psychological therapies are essentially the only recommended long-term treatment, but with access either restricted or non-existent in some areas, many people experiencing BPD remain untreated until they are in crisis – further undermining any attempt at stability that a BPD sufferer so desperately needs.

In addition, even in regions where treatment is available and accessible, the lack of choice in treatment is problematic for BPD patients. With the condition often causing impulsivity, emotional dysregulation, ‘mirroring’ and ‘splitting’, mental health professionals follow strict guidelines outlining that psychological treatments for BPD must be an engaged partnership – without this patient-therapist dynamic, treatment is highly likely to be ineffective and, from the point of view of the NHS, a waste of scarce resources. Being essentially rail-roaded into a particular psychological therapy, without sufficient explanation or options given, damages this dynamic – again, reducing the likelihood of a sustainable recovery.

By contrast, the guidelines issued by the American Psychiatric Association in 2001 do recommend the use of pharmaceutical treatments in Borderline Personality Disorder, noting that there is a case for the use of SSRIs, mood stabilisers and anti-psychotic medications in treatment. While there is a notable difference in the threshold of evidence required to make such recommendations (it being higher in the UK than in the US), it is important to remember that the fundamental difference between the US healthcare system and NHS England is that in the US, care is essentially determined by the patient’s financial circumstances.

Navigating the US healthcare system is, in itself, a daunting task. Services are provided by a large number of organisations working independently of each other, and access is generally gained through insurance coverage. 18% of hospitals are operated on a for-profit basis, 20% are owned by the government, and 62% are non-profit organisations. Between 60%-65% of healthcare is provided by programs such as TRICARE, Medicaid, Medicare, the Veteran’s Health Administration and the Children’s Health Insurance Program, though most employed people are insured by their employer, or that of a family member. The government provides health insurance for public sector employees, some people have private health insurance, and some are without insurance entirely. In 2004, the Institute of Medicine (IOM) reported that “The United States is among the few industrialised nations in the world that does not guarantee access to healthcare for its population.”

The nature of this system is a contributing factor to the United States’ consistently low ranking in global surveys of healthcare quality, conducted by organisations such as the World Health Organisation (WHO) and the Organisation for Economic Co-operation and Development (OECD). In an attempt to address some of these issues, President Barack Obama signed into law the Patient Protection and Affordable Care Act (PPACA) on 23rd March 2010. This federal statute – highly controversial to some – was designed to bring about a significant regulatory overhaul of US healthcare, aiming to control healthcare costs, and expand coverage through both public and private insurance.

It is the issue of coverage that often causes most concern for US residents with health problems – particularly mental illness – as profit-driven insurance companies have been known to routinely deny coverage for pre-existing conditions, mental illness or addiction problems. Addressing these concerns, Secretary of Health and Human Services, Kathleen Sibelius, announced on 8th November 2013 “the largest expansion of behavioural health benefits in a generation.” The new regulations are designed to enforce the 2008 Mental Health Parity and Addiction Equity Act, and should ensure that insurance companies are required to cover treatment for mental illness and addiction in the same way as physical illness. Additionally, coverage cannot be denied for patients with a history of mental illness, where previously, patients were often left to finance the entirety of their own treatment, sometimes to the point of bankruptcy.

In a situation closely echoing that in the UK, the noises being made by the US government about mental health services and equality in access are very encouraging, but the reality on the ground remains problematic. Ensuring the expansion of healthcare coverage to fully encompass mental health is certainly a positive move, but only works if the infrastructure is present to support it. Senior mental health professionals in the US, while applauding the new regulations, have expressed concern that demand may outstrip the available resources. The message is that more qualified professionals are needed – something that requires long-term investment.

In the meantime, US patients with Borderline Personality Disorder are seeing little improvement in services available to them as they continue to face not only a postcode lottery akin to that in the UK – where treatment options depend on their geographical proximity to scarce, strained resources – but also an insurance lottery – since, although carriers are now legally required to provide cover, they can continue to do so only for preferred providers, further limiting the treatment choices available. As seen in the UK, this can pose a further barrier to recovery from BPD.

It is no coincidence that both the UK and US governments are attempting to tackle the problems in mental health service provision now. In recent years, mental health charities and advocacy groups in both countries have become much more vocal about the need for change – both in terms of treatment and support, and in the general attitude of society towards people experiencing mental illness. Necessarily, in a time of global recession, these voices have grown louder, in an attempt to ensure that mental health services remain too visible to cut. It is also the case that these governments are finally acknowledging, publicly, the fundamental truth about the benefits of a mentally healthy population – that every single aspect of a country is improved, if the population are supported to achieve ongoing mental health.

Despite their vastly different healthcare systems, the situation faced by those diagnosed with Borderline Personality Disorder in both the UK and US are broadly similar, in real terms. Far from being ‘on the border’, BPD patients are in fact in a no-man’s land – almost echoing the outdated sentiment of the diagnosis being the ‘dustbin’ label of the psychiatric world. Although sustainable recovery is possible – and has been proven to be possible – it is beyond the reach of the vast majority, due to lack of access to the right treatment.

The effect of this is often catastrophic. The nature of the illness when left untreated – with all its significant functional impairment, impulsivity, emotional dysregulation and instability of identity – increases the likelihood of the continuation of cycles of deprivation, poverty and self-harm, all of which occurs at additional cost to the state.

Individuals with Borderline Personality Disorder are more likely to require medical attention for physical ailments – due to self-harming behaviour – which places additional pressure on healthcare services. They are more likely to find it difficult to maintain employment and housing – often placing additional pressure on welfare resources. They are more likely to struggle in an educational setting – placing more pressure on schools and universities. They are more likely to suffer abuse at the hands of another person – placing additional pressure on law enforcement and, again, healthcare systems.   They are more likely to find it difficult to maintain relationships – again placing additional pressure on all social systems in cases of familial breakdown.

In the UK, where medication is not recommended for BPD, those waiting to access psychological therapies often have nothing but a telephone number for a 24 hour crisis line, to use when necessary. In the US, where pharmaceutical companies are big and influential business, and medication is recommended, those needing psychological therapies are often prescribed a cocktail of anti-psychotics and tranquilisers indefinitely, while being left to navigate the choppy waters of insurance companies and preferred providers themselves, while unwell.

The fact remains that, in spite of US federal statutes and UK government policies, millions of people with Borderline Personality Disorder – and other mental health conditions – are being prevented from fully participating in society, by being denied the means to achieve and maintain a meaningful recovery. This, in itself, is discrimination.

With more investment in the training of mental health professionals, and real investment in mental health services – as opposed to repeated budget cuts – it may just be possible to bridge the gaping divide between governmental intention, and real, quantifiable improvement. In the end, as with everything, it boils down to the bottom line, and the appropriate allocation of funds. Money makes the world go round, and it is high time that those with Borderline Personality Disorder were afforded the opportunity to fully play their part.

By Sarah Myles

Commissioned by BPD Magazine – December 2013.