The Rejects: 6 Things No One Tells You About Working in Medical Research.

Typing the words “medical research” into Google conjures up endless images of young Caucasian adults in lab coats & blue gloves injecting strange, blue fluids into conical flasks and/or various rodents. There are so many things wrong with these search results, not least the lack of representation of literally any other ethnicity making valuable contributions to modern medicine, and also the failure to include any kind of disability. All the “researchers” are sickeningly gorgeous too, and as anyone who wears one knows, lab coats are not flattering.

Social representation issues aside, I’m here to dispel the notion that being in a wheelchair depletes my intelligence so much that I couldn’t possibly work in medical research, and also to let you in on what my industry is really like.

  1. I Work in an Office.

Not everyone working in medical research spends their time doing magic tricks in a laboratory, in the name of science. In fact, a large proportion of us work in an office so ordinary that you would have to look hard to discover what industry I work in. Eventually you would notice the disembodied fake limbs covered in disgusting wounds lying around under desks, which are used to train medical practitioners in trial procedures before testing it on limbs attached to actual live people. That’s if the security team didn’t escort you out first, asking why exactly you were snooping around our offices in the first place.

  1. You Don’t Need a Background in Medicine.

While I personally have a background in biochemistry, many of my colleagues & superiors do not. We have an entire team dedicated to finances, business management, & resourcing. We have our own IT department who build, maintain, & constantly fix our bespoke databases when one of us manages to break the entire thing. We have trial coordination teams who do all the paperwork, including everything dedicated to ethical approval, & organizing the meetings of the committees in charge of each trial. Then there’s the team I’m a part of, the data team, which processes all of the study data that is collected before it goes to the statistics team for analysis. In fact, the statistics team is the only one where a specific qualification is required.

Don’t let a background in business management & IT, & work experience in administration put you off applying for a job in medical research; you might be just what we need. Besides, if everything was left to the scientists, there would be genetically-modified Hulk-mice running rampant within the week.

  1. Budgets are Tight.

Charities & government bodies are constantly granting enormous sums of money to universities to fund studies & medical research. With these grants often reaching millions of pounds (or dollars), it sounds like medical research is insanely profitable, with everyone employed there earning 6 figures.

While in comparison to my last job in the NHS my employers are practically rolling in money, the budgets are by no means luxurious. The truth of the matter is that medical research is expensive. There’s the cost of the equipment, drugs, & office materials to consider, the insurance in case something goes supervillain-esque wrong, & then employees do have the ungrateful desire to be paid at the end of each month. Nor do our wages reach the 6 figures apiece you might imagine. Many of us don’t earn enough to pay income tax, or even to start paying back our student loans (I’m in the UK, just in case the free, national healthcare bit didn’t give that away). While I am lucky to earn enough for my needs, and have good holidays, sick pay, & a pension, I could hardly spend frivolously at my slightest whim.

  1. Ethics is Everything.

There is a subtle trend in pop-culture that may have escaped your notice; scientists are almost always the bad guys. Or, even if the scientist isn’t the bad guy, it’s their recklessness that results in them becoming a mutated super-human.

Now, admittedly some scientists have done some pretty horrendous things to their subjects, often against their will while they’re in a vulnerable situation. However, modern times make it a lot harder for scientists to do whatever they want to whoever they want, consequences be damned.

Every idea, form, advertisement, & procedure relating to the trial must pass ethical approval. Once the study is started it is subject to constant safety & ethical assessments, & should it not meet standards changes are made or the study is stopped altogether. Changing a single character on our database requires ethical approval. Every doubt is addressed, every problem fixed. The bureaucracy can at times be irritating, but it is absolutely essential.

  1. There’s a Reason Why We Don’t Pay You.

One of the biggest obstacles to recruiting participants is them finding the time to participate. We often have potential subjects turn us down because they can’t afford to take the time off work, but tell us that if we were to pay them for their participation, they would change their mind. Contrary to popular opinion, however, there is a reason we don’t often pay subjects.

The same ethical bodies that stop scientists from turning subjects into gross mutants are the same that often won’t approve paying subjects; it counts as bribery, & bribery is completely unethical. Once you start offering money it would be easy to offer even more money to subjects if they underwent more & more dubious procedures.

There is also, believe it or not, a scientific reason: bias. Offering to pay recruits encourages people in need of money to participate over people who already have enough money. This means that the study population is more likely to come from low income backgrounds, and issues such as level of education, access to healthcare, & the number of hours worked per week start to effect results. The fact that particular social groups or even genetic groups are predisposed to low-income scenarios only exacerbates this.

  1. We Love Animals.

I don’t work on any studies that involve animal testing, & couldn’t even tell you if or where animal experimentation took place at my university. That is the case for most people in medical research, many of whom will go their whole careers without experimenting on a single rodent. In fact, the vast majority of us simply couldn’t bring ourselves to do it, even if we reluctantly support the practice.

Even among the scientific community, animal testing is avoided at all costs. Similarly, to the human trials I work on, animal testing of any kind is subject to rigorous ethical approval, and if any potentially harmful process can be avoided, it will be.

Perhaps most ridiculously of all is the fact that animal testing isn’t that scientifically robust. Injecting a mouse with a drug gives us an idea of what it might do to humans, but physiological differences make that very uncertain, especially when considering dosage. Studies on humans are considered far more robust than those on animals where human medicine is concerned, & carry more weight in the medical community.

The reason we don’t stop animal testing altogether is quite simple; recruitment. Many people have never participated in a trial of any kind, based on the presumption that behind every study is an evil maniac trying to destroy humanity. Without large enough samples, we need more evidence from different places when assessing if a new treatment actually works & is safe. That evidence usually comes from animals.

At the end of the day, medical research has a reputation for overt wealth & bad intentions. In reality, the people I work with are some of the hardest working, most compassionate, & diverse adults you will ever meet. We just happen to have prosthetic limbs with fake wounds under our desks.

TEDx: Disability in Education & Employment.

Disability presents a lot of challenges in day-to-day life. Something as simple as shopping can become Mission Impossible, so what happens when it comes to the more complicated stuff like school & work?

In the past 5 years I have finished high school, graduated from university, & had 2 jobs. There were problems I faced purely in relation to the disability in each of these situations, with the transitions between them being equally difficult. While I’ll be discussing my personal experiences of education & employment with a disability, I have been told that many others have encountered similar situations.

 

My high school was a gritty reboot of Waterloo Road. It was underfunded, overcrowded, & we had our own policeman assigned to the school. The standard of education was actually excellent, but pretty much everything else was falling apart at the seams just weeks after opening.

From the day I first fell ill at age 14 I encountered problems. The attendance team hounded me like I was a criminal, I was pushed back into P.E & dance far too hard far too soon, & I was initially denied the right to use my wheelchair at school. Once I had the right to use my wheelchair I was denied access to the support I needed, namely someone to push the wheelchair which I couldn’t physically do myself. It took up until I started my A-levels for me to get the help I required, and even then assistants would frequently fail to turn up, leaving me stranded.

While in the final year of my A-levels we were applying for university. At the time “UCAS points” were all the rage; if your grades fell a little below the requirements for the course of your choice, many universities would accept these points & allow you to enroll. UCAS points could be obtained by doing things like the Duke of Edinburgh badges, & raising money to go abroad over the summer to do charity work in developing countries. If you didn’t take up UCAS point opportunities you wouldn’t be penalized by the school so much as shunned, your efforts deemed unworthy, even if you couldn’t obtain UCAS points because not one scheme was willing to adapt for a wheelchair user.

I went the traditional route & focused on my education, except here I was penalized for not constantly retaking exams to get marginally higher marks. I had decided to put all of my efforts into studying for fewer exams, as studying for too many while chronically ill would have been disastrous. I got the grades I needed to go to university, which I hadn’t been when doing the constant re-sits demanded of me, but even when going to collect my final exam results I was reprimanded for being “too lazy” to take re-sits & get even higher marks.

It’s safe to say I was relieved to leave school & head to the University of Leeds School of Food Science & Nutrition.

 

University went much smoother than school. By this point I had been able to save up just enough money for a second-hand powered wheelchair so had gained independence. I was not penalized for taking fewer extra-curricular activities & focusing on my degree instead, and was supported by my lecturers & tutors. I had accessibility issues just like anywhere else, but these I could cope with.

There was the option to take a year out of my degree to study abroad or go on a work placement. I couldn’t afford international study even if I’d wanted to, but I did invest a great amount of time looking at potential work places. Many placements were based in factories & professional kitchens; not the most wheelchair friendly of spaces. Placements in dietetics were impossible to find as they all required you to have tailed a dietitian previously, something which is almost completely prohibited for patient safety. Many placements wanted extensive work experience in their candidates, but working on top of studying was simply not feasible for someone with a chronic illness. The remaining placements were all unpaid, & I simply couldn’t afford to live somewhere unpaid for an entire year. Yet another opportunity was closed off to me.

I went straight through my degree, during the final year of which I applied for graduate jobs, often facing the same problems as those for placements. I went to careers fairs. I went to the career’s advisor hubs & job-hunters based at the university. I booked one-to-one sessions with an advisor. Not once in any of these meetings could someone provide me with information about the accessibility of the jobs on offer, or even where I could find this information aside from blatantly asking with each application. Despite the many laws & policies meant to prevent prejudice, many potential employers seemed to suddenly lose interest upon discovering that I used a wheelchair, failing to reply to further messages, or simply terminating my application on the grounds that they couldn’t get me in the building.

I looked into progressing into dietetics as a post-graduate, but was bluntly informed that I wouldn’t pass the health checks needed to take the course. I couldn’t figure out how on earth using a wheelchair inhibited my ability to help people with their diets, of course assuming that the NHS would be the most accessible employer out there. After all, if you can wheel a bed through a hospital, you can get a wheelchair through, right?

 

My first job was in the NHS. The pay was barely above minimum wage, the hours were so pitiful that my annual earnings actually were below minimum wage, and it amounted to little more than pen-pushing, but it was a start. I proudly went to collect my ID badge from the HR department, rolled up the ramp & through the automatic door, & straight into a set of stairs. I looked around; there was no lift or other accessible entrance, & HR was 2 floors up. So I called them. At first, they simply refused to come down, but once a delivery driver had noticed my plight & marched up the stairs on my behalf, they were more obliging.

I started my job & almost immediately found that my credentials didn’t work when logging into my laptop. I called IT & they told me to come to them. I explained that given that they were 3 floors up without a lift, I couldn’t. After days of arguing they finally came out to us. This would happen every time I encountered an issue with my work laptop, but eventually the arguing lasted minutes instead of days. That was until one of my superiors decided I was making a fuss about nothing, told IT not to “pander” to me, & booked me an accessible taxi out to them before I’d even arrived in the office. It took the entire working day for me to get there & back as IT refused to come down to me, & upon my return I couldn’t even get into the office as my colleagues had blocked the door. I quit a week later; and that’s not even mentioning the fact that they failed to tell me about the Access to Work scheme, & once I had gone through the process they refused to follow the advice provided anyway.

 

I didn’t apply for any other NHS jobs, knowing I’d only encounter the same issues wherever I was. Instead, I predominantly applied for jobs at a place I knew was accommodating; the university. Less than 2 months later I was being trained for my new position at the Clinical Trials & Research Unit in the medical school. I didn’t go through Access to Work again, but the in-house occupational therapist recommended a specialist mouse, keyboard, keyboard-tray, desk, & chair to help me work, all of which I received soon after starting. I had issues with lift access & instead of being reprimanded, I was granted access to another lift that only a few of us, mainly disabled staff & students, could use. Office cubicles were even rearranged so that I could have a wall socket to charge my wheelchair.

 

Many accessibility issues relate to attitude over the facilities provided. This is true of educators, employers, health care providers, customer service workers, & people on the street. If you think this is untrue, just remember the current political attitude:

If a disabled person is not in education or employment, they’re a lazy scrounger living off the system, but if they do happen to work or be in education, they’re faking their disability.

You Are What You Eat.

Given my passion for my chosen field of academic study (nutrition, if you didn’t know) you should probably be relieved that up until this point I have managed to resist to urge to write about what I eat. Today that all comes crumbling down (ooh, crumble).

The complexity of the relationship between diet and health cannot be overstated, but is only made more complicated once disease has to be considered. Throw in multiple diseases and suddenly you need a degree to figure it all out. Fortunately, I just so happen to have one.

My primary consideration when it comes to food is actually fat intake, due to the fact that all the way back in February 2017 someone stole my gall bladder. The gall bladder stores bile and pours it into the small intestine when food is detected in the gut. Fat absorption is increased as a result. Without a gall bladder bile simply drips into the gut continuously, regardless of the presence or absence of food. When it comes to meals the bile excretion doesn’t change and the ability to absorb fats from meals therefore reduces. Simply and grossly put, if the fat isn’t absorbed it leaves the intestines via another route in something called steatorrhoea. If you are in any way squeamish, for the love of god DO NOT GOOGLE WHAT THAT IS.

After this I need to assess my fibre intake. Colorectal cancer runs in the family, and the constant dripping of bile into the intestine after the gall bladder is removed irritates the gut wall, increasing the risk of developing the cancer even more. CFS can also result in constipation which is alleviated by fibre, as the use of painkillers and decreased exercise levels both demote bathroom business.

My next consideration is maintaining energy levels throughout the day. Consuming complex carbohydrates like bread, pasta, oats, rice etc. provides energy over a longer time period, and caffeine and sugar can be used to give me instant boosts when my energy levels drop. I also don’t want to consume too many calories as without exercise extra calories simply get stored as fat, causing a gain in weight.

Minor considerations include vitamin and mineral intakes as these are all involved in the normal energy metabolism and immune responses, and also the consumption of isoflavones from soya which may reduce the risk of breast cancer, a disease which also runs in the family.

This all sounds very complicated to create a diet that meets all of these needs, so to demonstrate what this looks like, I’ve recorded what I eat on an average day.

6 am: caffeinated coffee and cereal with skimmed milk (to keep fat intake low).

7 am: another coffee with a little skimmed milk in.

9 am: either coffee or tea, again with skimmed milk.

11 am: either coffee or tea, skimmed milk.

12.30 pm: lunchtime! Coffee with skimmed milk, a sandwich on white bread (white flour is fortified with additional nutrients, whereas wholemeal bread has more fibre, but compounds in the fibre reduce the absorption of nutrients), an apple, a handful of grapes, and a low fat yogurt.

2 pm: tea or coffee with skimmed milk, a couple of biscuits.

4 pm: tea or coffee with skimmed milk.

5.30 pm: tea or coffee with skimmed milk.

7 pm: decaffeinated tea with skimmed milk.

9 pm: carbonated water, main meal (example: Stir fty with instant noodles, sauce, poultry, a red onion, pepper, courgette, and frozen sweetcorn. The soy sauce contains isoflavones, and the frozen sweetcorn is richer in nutrients than fresh sweetcorn as nutrients are “locked in” when frozen), dessert (cake, sometimes with ice cream or custard).

10 pm: decaffeinated tea with skimmed milk.

Without access to some of the resources I used on my degree it’s difficult to give a precise calorie count but this comes to between 1,600 and 1,800 kcal per day. The occasional glasses of wine would bump this up to 2,000 kcal. Before you panic and say I eat too little, please remember that I have extremely low levels of activity and therefore simply don’t need the calories!

The management of my diet enables me to maintain relatively steady energy levels throughout the day, which is particularly important at work, and also keeps me from developing the very unpleasant side effects that come from gall bladder removal. At the same time my diet is by no means bland, is interesting and varied, and includes some typically unhealthy foods. Consumption of unhealthy foods in moderation can be part of a healthy diet, and I don’t spend my entire life eating what looks like next doors hedge.

And now that I’ve written this, I’m hungry…

Mission Impossible 5: Time for a Holiday.

Everyone needs to take a break every now and then, and I’m sure it comes as no surprise when I say that even going on holiday is problematic for those of us with a disability. If it does come as a surprise, you might want to crawl out from underneath that rock you’ve been living under.

The first hypothetical hurdle comes when choosing where to go. Holiday parks like Disneyland are probably a relatively safe bet when it comes to accessibility, but not everyone enjoys eating pure glucose while being harassed by princesses and having to dodge around marriage proposals on every corner. City breaks provide a solution to most of these problems if you can cope with the heavy levels of traffic as everyone not lucky enough to be on holiday travels to work. These also rely on venues being accessible, something which is not always guaranteed. For those who aren’t especially fond of other human beings there are many beautiful historical and geographical marvels around the UK, particularly around North Yorkshire and the Lake District, but mountains and castle ruins aren’t the most wheelchair-friendly terrain.

The next thing to consider is accommodation. I was never one for camping as the idea of sleeping on lumpy grass while rain batters the tent mere inches from my face, and having to check food for insects before eating it does not appeal to me. While there probably is a wheelchair friendly tent hidden in the annals of the internet, I imagine it would cost a pretty penny, so camping is immediately ruled out. Youth hostels are often affordable and have accessible rooms, provided you can cope with sharing a space with delinquent adolescents. Independent hotels are never guaranteed to have accessible facilities, so the easiest route is to hope that a chain hotel in the area has an accessible room free for when you want it.

Most difficult of all is the consideration of transport. There are countless instances of air services losing wheelchairs, literally leaving the wheelchair user stranded in a different country while the staff try to figure out what all the fuss is about. Trains are also horrendous. Booking assistance to get on the train is like disability roulette as many a time it simply doesn’t materialise. Wheelchair spaces are often two narrow to accommodate a wheelchair, as are the bathrooms, and on occasions trains insist that wheelchairs are stored in luggage carriages (at an extra cost) at which point they get lost. Coaches can only accommodate manual wheelchairs that fold up and fit in the luggage component, although the drivers are usually trained in how to handle disabled passengers so are significantly better than trains and planes. Travelling any distance in buses or taxis soon accumulates great cost, and it is common for a disabled taxi to turn up very late, or the wheelchair space on a bus to already be in use.

All in all, the stress of organising everything and dealing with the inevitable accessibility issues often makes going on holiday feel like hard work. I know many people who choose to have a “staycation” instead, where they stay at home and only visit places in the local area for relaxation. Non-disabled people might find this concept ridiculous, but when going back to work feels like the holiday you were supposed to have, what’s the point in going at all?

The Working Days.

After an unsuccessful stint in the NHS which ended in redundancy a mere seven months after it began, I was lucky enough to find a new role in the medical research team at the university where my adventures began, and was only out of work for a little over a month. I promised many moons ago that I would write about being employed when I got there, at the time not realising that my upcoming work in the NHS wouldn’t make for good reading. Once there I decided to wait for something better to come along, and in a rare instance of good luck, something did.

The alarm rings at 6 am and I groggily emerge from the covers to eat the breakfast provided to me by Jarred, while he rushes to get dressed and catch the bus out to his own job. Often I will read for a short while before going to take my medicines and get dressed. I force my unruly curls into something resembling a neat bun and apply minimal make-up, before checking emails and social media. At 8.30 am I start my commute.

The university is near enough for me to commute as a pedestrian, ploughing through the crowds at bus stops and silently praying that one day they will realise I’m as a regular a commuter as they are, and figure out that keeping the pavement clear might be helpful. The route is probably only a mile long but the crowds make the journey feel longer, and I usually arrive at the office a few minutes before 9 am (depending on how many people took the stairs that morning). While I wait for my computer to wake up I get a hot drink from the nearby kitchen, and then I get to work.

My actual role in medical research is somewhat difficult to describe as it’s more classified than James Bond’s butthole, and disclosing too much could lead to me facing criminal justice (let alone getting fired). However, as always I am utterly committed to fan service, so here we go.

Every medical research trial has a team of people behind it who take the study design as instructed by the clever people in lab coats and actually make it happen. This team deals with practical and ethical concerns around recruiting participants, consent, and data collection, as well as liaising with sponsors and government bodies to keep everyone informed with the latest developments.

Within this team is a group who handles data collection and storage. Data is sent to us, entered into a secured database, and is then checked for errors, discrepancies, and missing information. This is the point where I come in, making sure that all of these little problems are resolved. This data can then be used by the statistics team to address the research hypothesis, and the more complete and accurate the data is, the better this analysis will be. My background in nutrition and understanding of statistics has certainly leant itself well to this role.

In between this data cleaning work are the usual meetings and goings on of any busy office, and I’m lucky enough to get an hour long lunchbreak in the midst of it all. By 5 pm the fatigue is starting to rise exponentially, so I log out, pack everything back into my desk, say goodnight to any colleagues still in the office, and head home. The pavements are equally a crowded but with no pressure to be somewhere for a particular time, this isn’t a problem.

I arrive home at approximately 5.30 pm, get a warm drink, and check social media, before going for a bath. After that I rest, often picking up a book to read until Jarred gets home at 9 pm. We get tea together, usually the defrosted half of something I made at the weekend, catch up on our favourite You Tube channels, and then go to bed. I don’t seem to have any trouble falling asleep, and morning quickly comes round again.

Finding a job – what happened next? – My Family Our Needs

Here’s a little mid-week treat for you all; what’s it like to be disabled in employment?

This ties in perfectly with next week’s blog post, which will have more of a focus on what my day-to-day working life is like.