Tested and found wanting: The experience of completing cognitive assessment 

This piece was originally written as a shorter commentary of a piece in Clinical Psychology Forum. It was scheduled to be published but then got put on hold amidst their various special issues so I thought I’d share it here.

For those unfamiliar, neuropsychological assessment (also referred to as psychometric or cognitive testing) refers  to the process by which professionals (usually but not exclusively by clinical and eductional psychologists) aassess cognitive functioning. This usually involves carrying out a series of tests and tasks with an individual that cover a range of cognitive skills, including memory, concentration, planning, organising, language and visuo-spatial abilities. An IQ test is a form of this testing. Situations in which an assessment might be requested include assessing the impact of a brain injury, asssessing for the presence of dementia, learning disabilitiy or specific learning difficulty. A neuropsychological assessment can provide useful information for gaining a greater understanding of an individual’s difficulties and considering interventions that might help them. 


From my own experience, neuropsychologial assessment is often not a favourie activity for psychologists. Some people see it as impersonal and rather arbitary – just running through tests that seem to have little relevance to everyay life in an automated fashion. It can be hard to see the person beyond the list of test scores andpercentiles  generated. I think some of the issue here is the way that neuropsychological assessment is taught and written about. Often there is a lot of foccus on selecting tests, carrying them out in a standardised way (which is of course important), scoring and analysing the data, looking for patterns. What can be left out is how to use neuropsychologial assessment information within a clinical formulation, consideration of ethical issues raised by the testing and how to best use interpersonal and thereputic skills within the assessment.

There has been increasing discussion around separating out clinical neuropsychology from standard clinical psychology training. This isn’t a move I suppport  and I think it’s essential to highlight how the core skills and knowledge of the clinical psychologist are incorporated in neuropsychologial work, including  when carrying out a good quality assessment. If we don’t bring psychology to these assessments, we may as well have clients complete them on a computer. Time pressures and perhaps a lack of professional enthusiasm for neuropsychological tetsing can squeeze out some of the human component. Below I detail a few areas that I believe are  sometimes left out and require attention.

The Stroop Test, one of the best known psychometric tests, is used to measure switching and inhibition (components of executive functioning)


Informed consent

The client’s consent to complete the assessment should always be sought. It is not uncommon for individuals to arrive at their session with little idea of what to expect, and less so the potential implications of the results. We should inform clients of the benefits of the assessment but it is important to also discuss potential negatives. The results may have a far-reaching impact, including contributing to the allocation of a diagnostic label and the potential stigma of this (such as intellectual disability), impact on eligibility for services and associated benefits including fitness to hold a driving liccense. Ideally this is a time for collaborative discussion about the questions the client would like the assessment to answer, and tthis can be used to plan the assessment. Misunderstanding the purpose of the assessment may also impact on the level of effort that clients put in. These converations take time and may be difficult to achieve when there is pressure from referers and other parties to get the assessment ddone quickly or not to “encourage” the client to decline the assessment. 


Creating meaning within the assesment 

In addition to contributing to formulation and intervention planning, there is potential for the assessment itself to be a meaningful and therapeutic experienceThe assessment may be the first time the client has had their difficulties heard and given sufficient attention, and psychometrics may provide a medium for discussing issues that can feel intangible and hard to express to others. IIve been amazed at the relief some clients have flt when I was able to give them words to describe previously nebulous difficulties. AAssessments can be long and stressful, they put people through their paces and can highlight the very things people find most difficult. Rapport needs to be built and maintained throughout the assessment to keep clients engaged, and empathic support provided if the experience triggers anxiety.


Feedback – Concluding the proccess

The provision of feedback brings the assessment results together and maximises the opportunities for the client to understand the outcome of the process and to take away something useful. Providing personalised feedback can enhance clients’ sense of control and engagement in their treatment. It can also be an opportunity to provide psychoeducationand discuss strategies for managing cognitive difficulties. The provision of thoughtful and sensitive feedback is especially important when the results indicate impairment or are suggestive of pathology. Feeding back need not always be a lengthy process and not all clients will wish to have a formal session, but offering this validates the time and effort they have put in to what can be a stressful experience, and also represents a conclusion to the piece of work.


The recent viewpoint article in The Psychologist magazine exemplifies a worst-case scenario where a neuropsychological assessment is experienced as a disjointed process without meaning. 


“The psychologists produced a range of memory, attention and executive function neuropsychological tests without telling me the names of the tests or why it was important for me to complete the assessment. I performed these tests obediently while feeling immense frustration and confusion inside. The results of the tests were never revealed to me. Strangely, the implications of my injury were never highlighted and coping strategies were not discussed. Instead, I spent hours performing these monotonous and challenging neuropsychological tests, while trying to deal with the emotional impact of the car accident and my brain injury alone.”


Experiences like these are regrettable and really an embaressment to the profession. Collaboration is however very possible and can bring the focus back to the client and their needs, helping them to get the most from the process.

 

Brain Injury Awareness Week: Survivors are already aware of difference, it’s time for everyone else to catch up

This week marks Brain Injury Awareness Week in the UK. In the neurorehabilitation service I work in we’ll be celebrating with a range of brain-related activities. We’ll be watching injury related films such as The Crash Reel, having a quiz and getting crafty with brain-themed cake decoration. We’ll be promoting the importance of looking after your brain – wearing a helmet, eating well and taking time to relax. Whilst it’s appropriate for us to throw these events, I can’t help but feel that are energy can be somewhat misplaced. Brain Injury Survivors aren’t the one’s who need their awareness raised. They live with disability and difference every day. Though some have difficulty fully understanding their injuries, they are experts in their own experience. The problem relates more to everyone else, the vast swathes of the population who have little understanding of brain injury and limit the social inclusion of survivors in their ignorance.

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Brain cake – delicious but perhaps not really raising awareness about the experience of brain injury

On the whole general knowledge about the brain isn’t high. It is after all, a highly complex organ that even expert neuroscientists don’t fully understand. Myths about the brain abound, ideas about “left and right brain thinkers” and the percentage of our brain we use haven’t been especially helpful. Understanding the brain requires looking at who we are as people, what makes us human, when makes up our identity, and how much control we truly have over our behaviour. This is what makes the brain fascinating, but it’s a difficult topic to confront. And then extrapolating from the delicate, blancmange like organ to understanding why it is that a survivor might suddenly get angry for no obviously observable reason, struggle to manage bills, become exhausted and overwhelmed, or any one of the many common consequences of brain injury.

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On politics: idealism and inaction

A little prose and musings…will probably add to this in time

As a child I was very idealistic. It sound pretentious but I generally had a sense of a “calling”. I imagine myself holding hands with activists in the desert (where wars happen, obviously) to stand in the way of battling troops, or feeding water to a poor malnourished child in the slums. Princess Diana was my role model and I felt sure I was going to go out and do Good Things. Growing up Jewish I think you assimilate your own sense of atrocity. We were taught stories of slavery and learnt the turbulent history of the state of Israel. Everyone knew someone who had been in the death camps.  We learnt and practiced “Tzedakah” (charity) and were taught that the greatest thing we could do for another was to help them to reach independence and self-sufficiency.

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Intention achieved: frightening children

My first awareness of current politics as a child in the 90s. I remember the anticipation and excitement around “New Labour”. There was a feeling of change. My mother told me that the Tories supported people who had money, and this was a party who represented people like us.  I remember seeing the crowds on the news cheering after the 1997 Labour victory.

But it wasn’t entirely the promise we’d hoped for. I remember watching the news show the troops going into Afghanistan in 2001 and I actually cried. I thought this was the stuff of history books, not something that actually involved my modern country. An idealistic child grew into an idealistic teenager. My simplistic views were left-leaning: everyone should get along and be treated equally, war is bad and we should look after the planet. I felt strongly about the environment and became a vegetarian (I missed chicken burgers, but felt it was the Right Thing). At school I joined Amnesty and spent lunch breaks hearing stories of torture that left me feeling awful inside. I became drawn to mental health and set my sights on becoming a psychologist, and became involved in politics through the school.

Vince Cable, effective politician, once came round and had a chat with my mum, general all-round nice guy

Vince Cable, effective politician, once came round and had a chat with my mum, general all-round nice guy

Our local MP was the Liberal Democrat Vince Cable and remember him as a very visible member of the community. He visited my school and came round door-knocking and chatted with my mother. He was very well loved locally and gave off a sense of really caring about the local people.  The issues I felt strongly about (increasing access and reducing stigma in mental health, supporting the NHS, sex and relationships education, reducing involvement in foreign conflict, LGBT rights and gender equality, and evidence-based drugs policy) felt more closely aligned with Lib Dem politics than any other party. At university I became a party member and I was later involved in some local campaigning.

Then came the 2010 election. The party I voted for went into power! I was thrilled, my vote was actually represented. Then things began to sour. Prior to the election I hadn’t been aware of how unrealistic the Lib Dem tuition fee promise had been, and the backlash from the people was immense. People protested and were largely ignored. When it came to the Alternative Vote referendum the public seemed to vote to punish, destroying our highly anticipated opportunity to have a fairer voting system. Then the cuts began. At this point I had begun working in the NHS. I had no experience of working in healthcare pre-austerity, but older staff had plenty of stories of how it used to be. Over 6 years of work in mental and physical health, across the NHS and charity sector I never worked in a team that wasn’t being “restructured”. We were fined for not reaching unrealistic targets that did not represent the work we did (as though with less money we would be more productive). Our criteria for accepting referrals grew increasingly stringent, as we turned away people whose suffering  didn’t quite meet threshold. I let my Lib Dem membership lapse and kept my head down when people discussed Nick Clegg and his treacherous party.

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Gifts for Brain Enthusiasts: Part 3

My last post was quite heavy-going and I’m in the midst of writing something more political so I thought it might need breaking up with something more whimsical! In case you’ve forgotten, here’s part 1 and part 2

Find 1:Think Geek is a treasure trove for brain and other anatomy-themed items. These coasters are made up of slices through the brain and look incredible, I’ll certainly be ordering some when they re-stock! Postage and customs (it’s a US site) can be high so worth saving for a bulk order with others.

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Wounded healer or undercover crazy? Coming out (quietly)

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Back in 2013 I wrote a piece on this blog about navigating professional and personal identities online, particularly in relation to being a healthcare professional. Reading it now, so much of it still feels as relevant to me as it did then. Since I qualified last year I decided that I’d “open” up my twitter and writing and link it with my “real” name. My main rationale for doing this was that I’d taken a job outside of the NHS in a new geographical area. Without the structure of university and attending NHS professionals meetings I felt quite cut off from the rest of the psychology and healthcare world. I wondered if in continuing to stay “pseudo-anonymous” limited opportunities to connect with other professionals and also possibilities for doing more writing and public engagement.

My main hesitation about being “out” and open is that I’ve written in detail about my own life experiences, which include experiences of using mental health services. I have concerns about how my own disclosures might be judged by future employers, colleagues and therapy clients, and the impact of this. It’s hard to work out whether this is a realistic concern or my own internalised stigma. I don’t feel that my experiences limit my ability to do my job well (though I worry that others may think this). I feel well enough to do my job and I have a clear plan for what I would do if this were to change.

Going back through my blog I’ve taken out only a few pieces. These were the stories that contained information about other people in my life that would be made more identifiable. Whilst I’ve chosen to be more open, I respect others’ privacy and it isn’t for me to share their story for them without their consent.

When I first started my blog I was particularly looking for a space to marry up my experiences as a service-user and as a professional. It’s been a useful reflective space and I’ve really valued the conversations with others through this, particularly other professionals who write about their lived experience (PsychConfessions , CBTwithAlieshia, Giant Fossilized Armadillo and pd2oT) and mental health activists who write in candid detail to raise awareness (e.g. BipolarBlogger and Ilona Burton). Just before I qualified I took part in a research study about psychologists drawing on their lived experiences of distress (I hope this will be published and I’ll get a good quote in!). It was a powerful experience taking part, it really brought together all of my experiences as I was transitioning from trainee to qualified clinical psychologist. I also applied for a post where one of the “desired criteria” was experience of using mental health services. This sent a very strong message that my experience was valued, but I still felt my heart beating heavily in my chest as I typed a vague line in my application about drawing on my experience to consider client expectations and barriers to engagement! It wasn’t raised in the interview, but I felt glad I had taken up the opportunity.

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Stroke, sexuality, sexism…back on track!

Harmless fun? If my meal's going to be unnecessarily gendered I hope it comes with pink icing and glitter

Harmless fun? If my meal’s going to be unnecessarily gendered I hope it comes with pink icing and glitter

After a long hiatus I’ve finally got time to get back to this blog. I can see that my last entry was Halloween 2013 – which was about 6 months before my thesis hand-in (so you can imagine how the time following this was spent). I’ve now completed my studies, qualified and am working as a clinical psychologist in a brain injury service. Getting up to speed on my new job (not to mention actually having to go to work 5 days a week, without a study day in sight!) has left me pretty shattered but I’m slowly adjusting to my new routine. A quick update on my recent movements:

  • I recently submitted my thesis (which was about sexual issues post-stroke and how rehab professionals work with these) for publication and I also presented it as part of a talk on sexuality and acquired brain injury that I did at the last SHADA (Sexual Health and Disability Alliance) meeting. I think I’ve now exhausted the potential to spread this piece of research (until it’s finally published), I’m ready to move onto studying something a little different now and also getting back to writing.
  • Following the submission I finally got round to writing something for my university blog, “Discursive of Tunbridge Wells”, something I’ve been meaning to do for ages. Salomons runs their own blog as part of their public engagement drive, it covers a whole range of issues related to applied psychology – debates within mental health, professional roles, lived experiences. It has some great content from a really wide range of contributors and I’m quite proud that my old department is putting something like this out there – I think it’s the only clinical psychology course to do so. My piece is about supporting people with cognitive impairments (e.g. brain injury, LD) to vote and how mental capacity relates to this (or doesn’t). It’s something I’d come across in my work recently and I definitely feel it needs more awareness! I’m hoping to do more writing relating to health and disability issues in forums such as this.
  • A couple of days ago I received a request from a journalist. I was initially quite excited as I thought maybe they’d picked up my voting piece (it is topical after all…). But alas no, they were running a piece on something on twitter I’d responded to the other day. The “story” relates to a picture of a cafe menu in Bristol that has “for him” and “for her” breakfasts. The masculine meal is a greasy Full English whilst ladies get a lighter option with salad leaves and blueberries. Whilst I don’t think a gendered breakfast is the biggest threat to feminism, this kind of lazy stereotyping annoys me, especially the underlying idea that women should have the diet-friendly dish. The story was originally published in the Bristol Post, but was then picked up by several other media sources (including the Daily Mail) which pretty much recycled the entire article and quotes “Outrage at Sexist Menu!!”. The article has of course attracted many entertaining commenters who see us as miserable feminazis with nothing better to do than get offended. I’m amused that this has generated far far more interest than any of my research or any of the many articles I’ve written over the years!  I feel sorry for the cafe who admittedly acted thoughtlessly but didn’t really deserve the level of attention this piece of non-news has achieved.
No need to actually go on the Daily Mail website, here's the bit that mentions me as if I have some kind of special knowledge on these matters.

No need to actually go on the Daily Mail website, here’s the bit that mentions me as if I have some kind of special knowledge on these matters.

So I’m hoping to do much more writing, presenting and generally getting out into the world in the coming year. If anyone needs a comment or piece written on any of my usual topics (brain injury and rehabilitation, neuropsychology, sex and disability, ableism and “invisible disabilities”, sexual and gender minority issues and related things) do let me know! Or I can comment on minor acts of unintentional sexism, I’m versatile.

Halloween and representations of mental health

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‘Mental Patient’ costume. This is clearly inspired by Silence of the Lambs’ Hannibal Lecter. Does that make it ok? And who is to blame for the offense? The author of the book? The director of the film? Or the costume maker?

As Halloween looms closer, I’ve noticed a considerable number of stories appearing in my time-line about ‘scary mental illness’ being used in Halloween media. The best known examples being the campaign for Asda and Tesco to take down ‘mental patient’ costumes, and the current debate over Thorpe Park’s ‘Asylum‘.

Mental health service users  have been debating these issues online with strong opinions on both sides. On the anti-campaign are claims that these images of people with mental health problems as frightening are deeply stigmatising and build into the damaging discrimination that people experience. Mental health charity Mind encouraged followers to tweet pictures of themselves to who what a real ‘mental patient’ outfit would look like.

On the other side have been voices (including those of people who have experience of mental health problems) saying that these costumes and attractions are clearly based on horror movie imagery rather than real mental illness and that the campaign has drawn further attention to the attractions and made people with mental health problems appear obsessive and joyless.

I haven’t fully formed an opinion on either side. The costumes are indeed insensitive, though they wouldn’t be the only ones out there. Though I don’t necessarily support it, fancy dress is often very un-PC. Cultural appropriation is rife (think red indian and geisha costumes), as is sexism. When it comes to Halloween, I wonder how pagans/wiccans and people with facial disfigurements feel about the other ‘scary’ costumes out on sale? Everyone has the right to be offended and express their view, but if we take down these ‘patient’ costumes, we should probably do away with many of the others also.

The idea of someone with mental health problems as scary wasn’t invented by costume makers. We have a long history of characters in horror films who are portrayed as suffering for mental illness, often shown as the ‘motive’ for their behaviour. The ‘psycho-killer’ is a common stereotype. These films are very popular and the incredibly negative portrayal of mental illness has seemingly gone unchallenged. Often these ‘mental patient’ costumes seem to be based on characters like Silence of the Lambs‘ Hannibal Lecter.

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Mental illness and horror – a popular combination?

An abandoned asylum is often a horror movie setting (think House on Haunted Hill). Asylums have an awful history, and rightfully so. The patients who lived in these asylums were subjected to awful treatment, and there’s a reason why these places were shut down. Some horror films have used this history, portraying cruel doctors and the kinds of horrific ‘treatment’ that was given out. Unfortunately some have preferred to focus on the patients themselves, and characterised them as frightening characters. Mental health problems can cause someone to act in a way that others might find hard to understand and frightening, but these media characterisations of scary patients surely does nothing to encourage understanding.

In one of Thorpe Park’s responses to the campaign they commented that the ‘Asylum’ attraction has been running for 8 years without complaint, and has been popularly attended. Why is it that uproar is only gathering now? Similarly, the ‘mental patient’ costumes are not new this year. It may be that mental health campaigners feel more empowered to take a stand and take on companies profiting from these negative stereotypes. While I hope this is the case, I think we need to consider why we’ve let negative portrayals of mental illness go so unchallenged for so long. We’re appalled by the straight-jacketed costumes but still flock to the films that inspired them. These costumes are in bad taste and I wouldn’t like to belittle the hurt they’ve caused to an already stigmatised group, but I think amidst the uproar surrounding them we need to think about where these ideas originate and whether taking down the costumes and attractions will really get to the heart of the stereotypes and stigma around mental health problems.