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.

swiss-roll-cake-2

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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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.

Being a Healthcare Assistant : Value & Experience

The term ‘healthcare assistant’ (HCA), ‘support worker’, nursing assistant and ‘care worker’ (and others) are used to describe staff would work to meet the care needs of patients in health and social care settings such as hospitals and residential homes. The job does not usually require a qualification and involves tasks such as assisting with washing, dressing, toileting and feeding, as well as sometimes engaging in other activities and daily tasks with service-users. It’s not a well-paid job, the hours are long and the work often tiring and repetitive  Sometimes agencies may provide staff, meaning that different staff will work in a setting each day, although many sites also have permanent staff.

Is this people’s image of care workers? Image from Parliament.uk

Care-workers have had some bad press in recent years. Winterbourne View shed some light on how staff caring for vulnerable adults are often lacking in training and supervision, and how in some cases these enables abuse to go undetected. Following the Stafford Inquiry, it was recommended that nurses spend additional time working as healthcare assistants to help them to be more compassionate and in touch with the ‘fundamentals of patient care’. Nurses have been very critical of this proposal but personally, I think all staff in healthcare would benefit from spending some time working ‘on the front-line’. Working in this kind of role can give you a greater understanding of the needs of the patients and a sense of the work of the people who provide the majority of the care for our country’s most disabled, unwell and vulnerable.

My first job out of university was was a healthcare assistant at a private hospital for adults with long-term and severe mental health problems, often with additional physical health needs and ‘challenging behaviour’. I was bright-eyed and interested in mental health, but I don’t think I had a clue about what the job might involve. I’d never cared for someone else before, unless you count babysitting and tending to hungover friends. It wasn’t long into my first day that I was filled with an over-powering urge to leave and never return. The building was over warm and was filled with a strong smell of cleaning product not quite masking that of human waste. I could hear yelling and residents walked the corridor slowly, giving me unnerving stares. The prospect of helping an aggressive man change his incontinence pad was somewhat terrifying.

The work was eye-opening and exhausting. I didn’t always like working there, but I still could my time at the hospital as one of my most valuable working experiences, and it has really shaped my perspective and professional identity today.

Getting to really know people. When you spend all day with someone, from helping them get out of bed and get washed, right through to the end of the day, you get a sense of their life that just isn’t possible in a once weekly session. I enjoyed the times I had a chance to sit and talk to residents about their lives, or to do activities with them. I liked the continuity I had with people, that I could get to know them, and them me. It was frustrating when other professionals would come in and talk as if they really know someone, when they’d barely spent any time with them.

Disgust, dignity and disability. As far as a first job went, there was far more contact with bodily fluids than I was expecting. But I think it significantly raised my threshold for disgust. It stopped really bothering me. And I hope that if I need it, there’s someone around to help clean me up too! What I found far harder was having so much exposure to how disabled and narrow the lives of the residents could be. Often there wasn’t a plan for residents to get better or leave, and many had deteriorating conditions such as dementia. One of the worst jobs I had was assisting a woman with Huntington’s who was progressively losing control of the muscles of her body, to smoke a cigarette. She wasn’t really able to suck and inhale, so she had the cigarette attached to a tube-like device, the inside of which was  coated in a black tarry substance, saliva and dirt from where she had dropped it. This device frustrated her, so she’d try and hold the cigarette, but her fingers were too weak and she’d drop it, burning herself. When I tried to take the cigarette and return it to the tube she’d yell and swipe at me. She was slowly dying but all she wanted was a smoke, and my job was to help her do it. It felt really harrowing, and it made me think about how small all of the things in my life that bother me are.

Lack of support. I had very little relevant experience, other than a psychology degree (which doesn’t prepare you much for working with a real-life person) and I received minimal training. I had a few days learning how to restrain someone and other staff quickly showed me how to wash, feed and transfer particular residents. And then they left me to it. Getting everyone out of bed, washed and breakfasted took me pretty much up to lunch, when it was almost time to start all over again. Nurses tended to stick in the office or the pharmacy (I know not all nurses do this, but it was mostly the case where I worked) and weren’t around when I needed their help, I was often left on my own or with other HCAs who on the whole had pretty low morale. The treatment I received from other professionals was often condescending and dismissive, I felt like the lowest rung in the site. I received minimal supervision, and when difficult or upsetting things happened at work there was no one to talk to about the experience. Apparently there’s a high-turnover for staff in these roles and I’m not surprised, though it must be very difficult for residents to see staff they get close to continually leaving and being replaced with new faces. The high demands placed on me to support basic needs such as washing and toileting left little time to go beyond this and engage in more personal and creative work with residents. I rarely even had time to look at people’s files, even when they had a substantial risk history, as if it wasn’t important for me to know much about the person I engaged so intimately with.

Many care-workers probably have better experiences than I did, the hospital I worked for definitely had some problems, but having talked to others I don’t think my experiences were all that unusual. HCAs and similar staff do the jobs that the rest of us are glad we don’t have to do, and receive little recognition for it. It’s a tough job and not everyone can do it. I’ve met staff who were truly brilliant, but the lack of  respect (not to mention pay) you receive on the job does limit how likely it is that skilled staff will stay in a post. These people need to be celebrated and given further training so they can develop in the role. The residents and patients deserve better. Though I found the job a useful experience and it helped me get further posts, I probably wasn’t the right person to be providing that sort of care to people with such particular needs. I tried to do my best, but I wasn’t experienced.

Now I’ve moved up a few pay-bands and I don’t have to clean up anyone’s vomit and it’s been a long time since anyone hit me at work. But my experience on the ward is still with me, and I often find myself drawing on it and using it in examples at work. It’s definitely impacted on how I think about healthcare, other staff and my own professional responsibilities. Though the work was tough, I definitely don’t regret doing it. Sometimes I even miss being in that community environment and having more time with patients (it seems as I develop more skills I get less and less time with the people I’m learning to support). I don’t think being a healthcare assistant/support worker/similar should be seen as a ‘lowly’ job that’s beneath the other professions. It’s not a job just anyone could do, and it takes a special kind of person to do it well. Unfortunately this isn’t reflected in the pay and  training attention that people in this roles often receive. For someone thinking of starting a career in healthcare I think you couldn’t have a better starting point, and you’d actually be at a disadvantage for skipping over it. It’s an enriching and insightful experience that I know I come back to again and again.

 

Stop-Motion: Tim Andrews’ ‘Over The Hill’ Photo Project

Rosie Hardy

I’m often drawn to art that draws on ideas about the brain, mind and mental health, and the combination of these. Tim Andrews’ ‘Over The Hill’ project is one that I’ve followed for some time and I feel it speaks a lot about identity and illness, as well as creativity and pushing the boundaries of portrait photography. Tim was diagnosed with Parkinsons in 2005, when he was 54. A couple of years later, he answered an advert in Time Out from a professional photographer looking for people to pose for nude pictures. The experience was enlightening and prompted him to respond to other adverts, and he took to Gumtree to find other photographers to capture him. Now his project includes a couple of hundred different photographers, from students and amateur hobbyists to well-known professionals such as Rankin, who have all photographed Tim in their unique way. The pictures range from candid portraits to monochrome nudes, vibrantly styled pictures and more surreal and bizarre imagery. I was already familiar with some of the photographers Tim has worked with and I like seeing how they incorporated him into their signature-style.  As a photographer myself, the images offer me inspiration for the myriad of different things one could create with a model (as well as thinking about getting in front of the lens!).

Miss Aneila

On his blog Tim documents his experiences with each of the photographers. What comes across is his real passion for art and how much he enjoys getting to know the different artists and being a part of their work. It’s fascinating seeing the many different ways that they have represented him, sometimes in a very intimate manner, sometimes more fantastical. One of the most noticeable features of Parkinson’s is the motor tremor that individuals develop. Given this, it’s interesting how the images often give such a picture of stillness and of peace. They’re static representations, frozen micro-second captures of someone who’s life must be rippled with hard to control motion. Parkinson’s is unfortunately a neuro-degenerative condition for which there is no cure, and given the subject matter you could imagine that the project could be quite depressing, charting the body’s decline. However, as Tim takes encounters a wider range of photographers, travels to further locations and creates ever more striking images, he tells a story of someone pushing to get the most out of life.

Justyna Neyring

Rekha Garton

Interview with Tim in the Times here

Unmentionables: Talking about sex in the healthcare setting

'The Sessions', in which a disabled man sees a sex worker, draws attention to the desire for individuals with disabilities to enjoy a sex-life

‘The Sessions’, in which a disabled man sees a sex worker, draws attention to the desire for individuals with disabilities to enjoy a sex-life just as much as the able-bodied.

Doctors, psychologists and other healthcare professionals, both in mental and physical health, are used to talking about difficult subjects. Bowel movements, terminal diagnoses, suicide and self-harm, tricky topics are a standard part of the job. Yet somehow when it comes to sex, many struggle to find the words or avoid the topic all together.

Sex, whether defined by sexual acts, more generally as intimacy or in many other ways, is an important human need. It contributes highly to individuals’ quality of life. On Maslow’s famous Hierarchy of Needs it comes only after physiological and safety needs in terms of importance. I think I can go as far as to say that changes or difficulties relating to sex are common to the majority both physical and mental health problems, whether they relate directly to the symptoms (e.g. impact of pain and limb weakness on sex positions, hypersexuality in mania) or are secondary to medication used to treat the problem or further consequences (such as impact of taking on a sick/carer role, self-consciousness relating to skin conditions). Anti-depressants are very widely prescribed, yet often information on the (common) sexual side-effects is left to be read in the small print. I’m reminded of a quote from Ben Goldacre on SSRIs,

“ I’m trying to phrase this as neutrally as possible, I really enjoy the sensation of orgasm. It’s important to me, and everything I experience in the world tells me that this sensation is important to other people too. Wars have been fought, essentially, for the sensation of orgasm.”

Stroke for example, is a condition where sexual dysfunction has been well documented. Yet in research speaking to rehab staff, they rarely brought the topic up with clients and on the occasion when it was brought up, staff often felt embarrassed and uninformed (McLaughlin & Cregan, 2005). Reasons given for staff not approaching the topic also included fear of upsetting clients and there has been other research suggesting that (often unconscious) stereotypes relating to sex, relationships, illness and disability, play a role in this silence. Although sex problems have been particularly highlighted in stroke, there is evidence that these staff attitudes and difficulties exist in a variety of settings and in relation to many other conditions. Whilst working in a clinic for Chronic Fatigue, I approached staff about the possibility of including sex and relationships as a topic to include in a psycho-education group, and was met with quite a dismissive response. It was too sensitive, and time was needed for other important areas. However, a friend with the condition informed me that on a service-user forum, the sections relating to questions and advice about sex were by far the most used. Service-users often have to go and seek out their own information because professionals fail to provide it.

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Amazing Legs – The Alternative Limb Project

Photo by Jon Enoch.

I recently went to see some of the Paralympics and was stunned by some of the skill and ability of the athletes. It really made me think about the strength and determination involved to rise to such a high level of ability in a world designed for the ‘able-bodied’. Indeed, seeing some of these individuals compete, it seemed strange to really think of them as ‘disabled’, they’re highly talented and possess abilities greater than the majority of the population.

London really raised the profile of disabled athletes and the closing ceremony was a spectacular example of this. One of the stars of the show was Viktoria Modesta, a singer and model who also happens to have had a below-the-knee amputation on one of her legs. Far from hiding it, Viktoria’s prosthesis is part of her unique look and she has various limbs for different occasions (and to accommodate the wide variety of platform heels she wears!). Looking through some of her photos, I spotted some more unusual artificial limbs. Viktoria has often worn pieces created by The Alternative Limb Project, who make imaginative and striking prosthetics that are also very wearable.

TALP director Sophie de Oliveira barata began her career by studying to create special effects prosthetics for film and tv and worked sculpting silicon limbs in a leading proesthetic centre before she set up her own studio. She collaborates with artists of various different mediums to create both ultra-realistic limbs and more fantastical and surreal pieces, tailored to the needs and imaginations of her clients.

These amazing limbs remind me of the carved wooden legs Alexander McQueen made for the athlete and double-leg amputee Aimee Mullens. They’re fascinating, beautiful and exclusive – pieces of art that can only be worn by a select few. My ordinary legs seem awfully boring in comparison! Work like this seems to speak about how difference can be interesting and exceptional, in the many ways in which it presents. 

Sophie in her amazing studio.