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Wonky Medicine

I rant, I review, I revise. Not always in that order. All three come together here.

To my God-daughter, on International Women’s Day 2017

Dear Gabriella,
I always knew you would one day be a strong woman; you don’t grow up with two older brothers, tall genes, surrounded by strong women, and turn into a shrinking flower. I’m delighted however that you started on the strength thing so young (very few people can beat me in an arm wrestle, young lady!).
I hope you know that today is International Women’s Day, and that you know how amazing a young woman you are growing up to be.

 
You’re growing up in a world where many argue that women have ‘never had it so good’. And to an extent, they’re right. But 70% of the 1.3 billion people in poverty worldwide are women. So we have a long way to go, and I know that you will help get us there. 
Make the most of school. You don’t have to enjoy every moment of your education (my hatred for maths is now an ingrained part of my character), but you should squeeze out every advantage from it that you possibly can. Not simply because so many women and girls never get the chance to benefit from an education (although that is true, and as good a reason as any), but because we need educated women in the future who take opportunities, who stand up for those who can’t stand for themselves, who will be our ambassadors to the future. Because those women and girls who don’t get an education will need your help, support, and experience to ensure that this changes for the next generation. Sorry kid, but you’ve got work to do. 
You love Harry Potter. Be Hermione. I know you can do that, because I know how determined you are.
Talking of work; embrace the word ‘can’t’. It is a glorious springboard you can use to propel yourself. Every time you hear the word ‘can’t’ – that is a golden opportunity to prove someone wrong. I want to tell you that there is little in the world more satisfying than being prejudged on your gender or appearance and then being able to prove that person wrong. But there is something more satisfying, and that is being allowed to do your thing, without anyone prejudging you. I wish I could tell you that this will always be the case, but it won’t. So enjoy proving people wrong, Ella, enjoy educating them for next time, and when the day comes where you are just expected to be awesome, regardless of your gender – GO BE AWESOME. Goodness knows you’ll have earned it.

 
Many women ‘settle’. They raise children, they create a home, and that is their focus. THAT IS FANTASTIC IF THAT IS WHAT YOU ACTUALLY WANT TO DO. And if that’s what you want to do, Excellent Ella, go do that. I will be the first person angling for cuddles at the baptisms of your babies (in the same way I was when you were the baby), and I shall expect to stay in your guest room, and bring much wine. Many of the best women I know have done this, and if you are happy, then I will be right behind you, fighting anyone who tries to belittle you for choosing that. But Ella, if you have doubts, if you feel remotely ‘pressured’ or ‘expected’ to do anything you aren’t sure you want to spend your life doing, then DON’T. You get one life, one only, and you have every right to live it your way. It won’t be easy. You never saw the all-nighters or the tears while I was at medical school. You didn’t overhear the panicked phone calls to my family in the early hours, doubting my ability. I had no Science A levels. Everyone raised their eyebrows when I said that I was going to be a doctor. Many questioned my decision to go back to uni. So did I, to be honest. But I bloody did it. And if i can, I have absolutely no doubt that you will do the same.

 
Make mistakes, make as many as it takes, but make sure you learn from them. If someone judges you on those mistakes, then that’s their problem – because you will find better people to spend time with, who will support you regardless, and not having you in their lives anymore will be their loss. 
Hold onto your amazingly open mind. You are the only person who has never mentioned that I now use a wheelchair, or a stick to walk. That’s not important to you, because frankly, you have so many more important things to consider, like art, Harry Potter, and tree climbing (thanks for not laughing too much when I got stuck. That’s my girl). 
You are determined. You are strong. You are everything I knew you would be and more. Embrace your quirks, your creativity, your ludicrously contagious laugh. Because they are what makes you you, and you are so incredible. 
I don’t know how much you remember of my brother Gareth. He was a far better godparent to you than I could ever be, even without the title. He thought you were wonderful (as ever, he was right). He loved to buy Lego for you. The idea that Lego ‘was for boys’ never even occurred to him. He knew you loved it, and so he loved to buy it for you. He saw your potential, your determination, and he loved you for that, as I do.
Go kick some patriarchal backside, Gabriella (I’ll explain The Patriarchy to you soon. I may be drinking gin while I do it). You can travel, learn, achieve, create, teach, lead, and innovate. I cannot wait to see the route you take, and I will be right there, applauding you, pouring the wine (when you’re old enough to drink it). 
Love 

Hannah,

Your Godmother

Xxx

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Why I ‘celebrate’ #InternationalWheelchairDay

I love my wheelchair.

I love that I designed it, complete with light up front wheels, a bright red frame and a tiny little bell. 

I love that the cushion is the most comfy and supportive ever, to the extent that I stay in it, even when I have the choice.

I love that as I speed down corridors at work, the porters have taken to yelling ‘DOCTOR ON CALL!’ Or ‘GO DOC, GO!’ At me.

I love that it has allowed me to get back into exercise, racing 10ks and training for Triathlons.

I love that when I enter races, people cheer me on personally, apparently unaware that I’m getting a massive advantage on every flat or downhill section…

I love that I take fewer painkillers as a result of using my chair at work – and I love that my chances of getting an ulcer is massively reduced because of this!

I love that people are constantly surprised by what I can manage in my chair – whether that’s going upstairs unaided in the Council Chamber of BMA House, or having a go on a skatepark and shocking mums and their buggies as they walk by.

I love that more and more people want to help with accessibility issues, take on transport companies and make life easier for wheelchair users, whether or not they themselves have a disability.

I love that people never bat an eye when I kiss my able-bodied boyfriend in public – and that he still laughs when I roll over his toes.

I love that my upper body is stronger than ever, and that my shoulders are broad.

I love that heads turn when I pull into a Blue Badge space in my hugely impractical 26 year old convertible, and jaws drop when I somehow manage to unpack an entire wheelchair from the passenger seat.

I love that good friends have apparently learnt more about how to interact with people in wheelchairs through knowing me.

I love that I now have freedom to get out of the house, and travel distances further than the short periods I could walk for would allow.

I love that I have had to become more confident, to handle the occasions when I throw myself on the ground by accident, or inadvertently crash into people. 

I love that I am able to continue in a career I love (most of the time!), because my chair means I can leave the house.

I love that I have met incredible people with a huge range of disabilities, who have both taught and inspired me so much. 

I love that I have learnt to campaign, and now can speak publicly at events to hopefully improve things for the next generation.

I love that I am able to use my experiences to advocate for some of the most vulnerable people in our society.

Most of all, I love that when I was at my lowest, when I was at my most broken, when my life and career plans seemed to be falling apart around me thanks to a body I couldn’t control, people near and far came together, regardless of whether they knew me, and crowdfunded my amazing chair. I love that in 24 hours I went from desperately trying to pull together every penny to fully funded by incredible friends, some of who I have never even met. I love that my faith in humanity, and myself, was restored by such generosity that I get emotional thinking about it even a year on.
Being in a wheelchair, even part time, is hard. A lot of the time, it is miserable, frustrating, and means I spend hours fighting for rights and access others take for granted. But having a wheelchair has changed my life, and today, I celebrate that change. 
Tomorrow, I return to the fight. 

#InternationalWheelchairDay

A Year On Wheels – the Lessons

As you may have gathered from the not-remotely-cryptic title, I’ve had my wheelchair for (a little over) a year now. It arrived on 8th December 2015 (ah, 2015, that year when the most traumatic thing to happen was my knee being pulled open and rebuilt), and sat, tantalisingly, at the end of my hospital bed, serving as the bribe to get me to bend that leg again so I could get the hell out of there and hit the roads, like the wonky Hunter S. Thompson I always knew I would be. Or something.

In the year since Ruby rolled into my life, I have learnt many exciting lessons, met many amazing people, and faced many frustrations. It seemed sensible to share some of these experiences, in the hope that someone like me may one day benefit from them.

1) ‘Accessible’ is a very vague term

It can mean whatever you want it to mean. As we’ve seen in recent articles, the Disability Act means diddly squit if there are no penalties for failing to meet the expectations, and guess what? There are no penalties. Regularly, I can turn up to a venue and find that what they have described as ‘disabled access’ means you can get in, but you can only pee if you go down a flight of stairs to the ‘disabled toilet’. This is a problem in bars. I am not a ‘one quiet drink’ kinda girl. I can do that at home, and save the journey. If you want to guarantee an accessible venue, you need to call ahead and spell out in words of one syllable exactly what you need. Even then, you may end up sat in the smoking area on Clapham High Street because your wheelchair is too wide for the gaps between the seats (Bodeans, I am looking at you).

2) Don’t move your legs!

Now, many people would see the ability to move one’s legs as a good thing. But do it on a bus, when you’re in a wheelchair, and the stares you will receive are amazing. The world has not caught up with the idea that not all wheelchair users are paraplegic. Stand up out of your chair, and you’ll get responses varying from “IT’S A MIRACLE!” to scornful tutting, and sharp intakes of breath. As a doctor, I tend to warn people when I’m going to stand up to examine them, and often reassure them that I won’t fall on them. I shouldn’t have to do this, but the looks of abject fear and occasional horror I am greeted with mean it’s easier just to do so. Here’s a tip, World; I know my legs and my body better than you. You are not (generally) a PIP assessor. The Daily Fail is not actually telling the truth when it tries to tell you that we’re all faking it for ‘benefits’. Disability is personal, and different for different people. Just lemme do my thing, and don’t judge me, in the same way that I don’t judge you. 

3) BIG BOOBS.

Well, that got your attention. 

Being on wheels changes your body, and your body image. It is nigh on impossible not to have a bit of a belly when you’re sat in a chair. It’s the positioning, and you might as well learn to love it. But your body changes in all sorts of ways; my shoulders have become broader, so jackets barely fit anymore, or if they do, I face the risk of a Hulk-moment where it tears apart in a moment of stress. And yes ladies, your pectoral muscles grow, which means your boobs can appear larger (and bras become a nightmare – more on this later). If like me, you spend some days in the chair and some days using sticks/crutches, then prepare for your brain to take some readjustment when you’re suddenly back to a ‘normal’ height and not staring up at people.

4) Be confident

People struggle with people in wheelchairs. It’s a whole minefield of etiquette that there is no real guide for. Some people crouch down to speak to me (Paediatricians. Every time.), others forget I’m there and have entire conversations with their back to me. Some try hard to pretend the chair doesn’t exist (which can be hilarious, especially when I run over their toes), others literally fall over themselves to ‘help’, which while well-intentioned, can actually be more of a pain. My tip for non-wheelies is to simply ask what I need, and I far prefer when people say ‘ask me if you need anything specific, but otherwise I’ll assume you have found a way to do things’ – the chances are, I have. Bizarrely, this social awkwardness often puts the wheelchair user in the more powerful position; while others freak out at the social complexities, we can get the hell on with it. World domination will soon be ours. As long as it doesn’t involve stairs.

5) Turn Up and Don’t Go…

Transport is a joke if you’re on wheels. Train companies ask you to give them 24 hours notice before you travel. Being a stubborn little wheelie, I refuse to do this. Half the time, I couldn’t if I wanted, because being a doctor doesn’t exactly lend itself to predictable working hours. If you are lucky enough to get on a train, you may well find yourself dumped in a random vestibule with no way of getting help if you need it, or on a train with no accessible loo within reach. Guards vary from lovely and determined to help, to monosyllabic, or worse, assume your colleague/friend is your carer (“Does she need a ramp?” “I’m not sure Dr Barham-Brown, do you?” “Well, I was considering levitation, but sure, let’s give the ramp a go…”). There is masses of progress to be made, and you should definitely check out the work of Transport For All, who are a fantastic charity fighting to improve things. In the meantime, getting a car saved my independence.

 6) Fashion is not designed for us

I hate trousers. I love the fact that they cover my scar, and keep my legs warm in winter, but when you’re sat in a chair, the waistband is going to carve itself into your abdomen. If you prefer a low cut, DO NOT LEAN FORWARDS. You’ll basically end up naked. I now live in dresses, which is fine and all, but some variety would be nice.

Bras are the work of Satan. Wires suddenly dig into your underarms, and the sports bra I wore for last year’s 10k chafed my armpit so much that it blistered. The rest of me was good for another 5k, but my underarm threatening to bleed stopped that. So you get bigger boobs, and uncomfortable bras, which are simply not designed for the shapes we become or the movements we make. It’s a cruel joke, I tell you.

7) Accessories start conversations. 

I am a big proponent of showing the world that wheelchair users are just as lovely and intelligent and capable as anyone else; we’re just built differently. My light up front wheels make people notice my chair in a positive way; I get daily comments from strangers about them, and I get to then say hello and not be remotely scary (most of the time). Even if it just gives people a smile, I like to think it shows that there can be a fun, humorous side to disability, and it helps me to make those little positive connections. I also have a bell. It’s pretty tiny and pathetic, but very satisfying. Ultimately, the chair is bloody obvious, and I can’t exactly hide it, so I might as well have fun with it!

8) Accentuate the Positives

Since becoming a wheelie, opportunities have opened up that I never dreamed of. I’ve been invited onto panels, I’ve been asked to join advisory groups, I’ve done more media work, and frankly, if you want someone to remember you, turning up on wheels is a pretty good way to do it! It’s not easy, of course it isn’t (pushing a chair in the rain or on ice is a nightmare!), but there are opportunities to be had, and amazing contacts to be made, and definitely positives to be found.
So that’s my wheelie year. At some point, I’ll blog about doctoring on wheels, which is a whole blog post in itself, but for now, I hope this helps people both in and out of the chair!

 

Junior Doctors – Burnt out before we begin…

I’m exhausted. Four years of intense study, placement, and recently taking on the government have taken their toll on a body that doesn’t like to play nicely at the best of times.

Exhaustion I can handle. But I spent yesterday afternoon on the verge of tears. After three years of nurse training, a year of working for the NHS and four years of medical school, not to mention over £100k of debt, I find myself genuinely unsure as to whether I can really build a career in the NHS, or even in medicine.

I didn’t do medicine for the money. Frankly, with two previous degrees, I could earn more, in far more sociable jobs. That’s true for most of us. To be frank, one has to be pretty bright and determined to become a doctor, and once we’re qualified, many companies are jumping at the chance to employ us and our many transferable skills. Got to cut a really tough deal with some hard-headed business types? If you have ever tried to perform a difficult and painful but necessary procedure on a scared four year old, while their terrified parents and siblings watch you and grill you on your reasoning, all at three in the morning, then I promise you, the business types hold little fear in comparison. There have been some doctors who have already taken advantage of this employability – this is an excellent example, and sadly, one of many.

I chose medicine because I have seen the work junior doctors do, I have directly benefitted from it, I have watched them fight to the last for two of my brothers in Intensive Care Units, and I wanted to be able to do that for someone. I wanted to be the person that patients could trust, who would do all she could to protect and care for them. I still want to be that person. But not if I can’t do my best. Not if I don’t think I’ll be safe.

I was asked to explain the whole issue today on social media. Four years of negotiations and spin aren’t easy to distill, but here’s the basics: the new contract has removed safeguards that currently stop doctors working too many hours, and replaced this with ‘Guardians’ – a scheme which has left many unconvinced. This is a problem because the Government are determined to have a ‘Seven Day NHS’ except no one is entirely sure what they mean by ‘Seven Day’ – they refuse to clarify what it is that they want to happen at weekends that doesn’t already. So we’re having to assume it means clinics, and elective surgeries.

The problem with this ‘Seven Day Plan’ is that we already have a shortage of doctors, and morale is at an all time low. Mr Hunt has declared that the new contract changes will be cost neutral, so won’t put any extra funding in for more doctors (incidentally, we’d also need all the other staff, such as nurses and radiographers – no plans for them either). So he wants more services, with no extra doctors. This means the already over-stretched doctors we have will have to cover more shifts and services.

Consider then that he has made our lives immeasurably harder by lying about statistics and trying to turn the public against us (learn more about ‘The Hunt Effect’here), and that his efforts have already led to an increase in staff leaving the UK and a decrease in students applying for medicine, and you begin to understand the scope of the issue.

On top of this, to fund his ‘cost neutral’ seven day plan, and cover weekends, he is going to have to cut weekend and extra hours pay – cuts which far outweigh the so-called ‘pay increase’ of 13.5%.

This is difficult for medical couples (of which there are many), as they will need more weekend childcare (which isn’t cheap), and specialties which are already hugely understaffed such as A&E will see staff taking even bigger pay cuts as their out of normal hours pay will be reduced. So they’ll recruit even fewer staff.

Is the money an issue? I’ll be honest, yes. If I’m working more hours, and going to be even more-stretched than the doctors I see currently who never leave work on time, then I want some financial recompense, as I could expect in any other sector. Especially considering how much debt I have to pay off. But mainly, I want to have a life outside of medicine.

I want to have children. I want to see them. I want their dad to see them too. I don’t want to spend the time I do have with them exhausted, or worrying about my patients and the care I’ve been giving them. I don’t want to be stretched so thinly that I’m not safe.

Medicine is where my heart is. It is what I have worked so hard for. Now I’m heading into my finals exams, and it’s only going to get harder. But the government has been attacking me and my profession for months now, and I’m exhausted.

#IAmTheDoctorWho

 

All the Wonkies, Independent (Throw Yourselves on the Floor…)

A controversial title perhaps, but nothing inspired by Destiny’s Child can be all bad. (If you don’t get the reference, check this out (Dad, I mean you…).

Recently, I read this article by Jodie Hardwick. To be honest, I got a tad emotional as I read, because I really related to it. I’m not the mother of a frustratingly feisty and constantly questioning daughter (though let’s face it, that may well happen one day, knowing my genetics). I related because I was (and probably still am) that daughter. I immediately shared it with my mother online, and could hear the exhausted sigh of recognition from across the country. She’s still in recovery, 28 years later (Jodie Hardwick, if you’re reading this, I promise it is survivable, for both of you, eventually).

I grew up as the eldest of three (which much later became four – check out this blogpost for story), and I was the only girl. This may explain many things – my discomfort around groups of other women, my inability to do anything remotely attractive with my own hair, my ludicrously competitive streak – but it has meant that from a very early age, I learnt to hold my own, even around a table of 5 people shouting 7 different conversations at each other at any time (friends who visited my family home, I apologise. We really are ALL bred to be this loud.).

It also meant I had to deal with the fact that despite the efforts of my incredibly determined parents, my brothers were able to do things I wasn’t. I spent many Sunday mornings in a cathedral watching my brothers sing in the choir. They didn’t take girls. So I sat and watched, got cross, and went and found a choir that sang in cathedrals all around the country and didn’t care that I sounded like a girl, because I WAS A GIRL, AND THAT SOUND WAS FINE. (Guess which of the four of us went on to run choirs? It wasn’t any of the three that sounded like boys…). The only sport I enjoyed at school was rugby. That became ‘Touch Rugby’ for the girls. DULL. Eventually, my brothers were bigger than me and winning fights. So I thought laterally, and decided to prove myself with my brain. That was decidedly more reliable than my girly body, which seemed to make life more difficult than fun.

Even now, as a student in a medical school that (like most others) is 52% female, I’m being told that me and my lady parts are bringing down the NHS (see this round up for more details). This isn’t a post about feminism. Many amazing writers of both genders have written on that, and I’m not going to fail in attempting to steal their thunder. But fighting is something I have had to do my entire life, and it’s not ending anytime soon.

One fight I wasn’t exactly expecting was with my own body. Yes, it’s girly, and it gets me into occasional scrapes with catcallers (I WILL call back. It WILL NOT be complimentary. Then I WILL phone any company your van/t-shirt/scaffolding may be advertising and tell them ALL about it.). Girly-ness aside, I was always happy with it. Until it started fighting back. I’m wonky now, and that brings its own challenges. The key issue for me has been remaining as independent as I ever was, and accepting that it’s actually not always going to be possible.

Imagine if you will, a brisk New Year’s Day, and a group of friends walking off their hangovers in a Wiltshire village, a route that includes a spectacularly muddy field. Now imagine a member of that party, newly ensconced in her wheelchair with cross-country attachment, determined to cross that field with everyone else, refusing help by yelling from her seated position “I AM A STRONG AND INDEPENDENT WOMAN!!”. Now imagine her getting stuck. Pushing hard on wheels that succeed in little more than spraying mud on her friends, covering herself in sludge, and getting deeper entrenched. Eventually, her long-suffering boyfriend pulls her out, and gets her back across the field and into a pub. Frustrating yes, but actually pretty hilarious. And that’s how I am learning to see it. I could get cross at every little thing I struggle with, or I could fight on with my physio, try to improve my physical state as best I can, get cross when things are easily surmountable if companies/councils only think, but try to let myself occasionally be helped.

Post-knee surgery, I was physically pretty useless. BoyFace had to help with a lot, and my chair arrived, meaning I used that outside, but needed a lot of support indoors. He was (and remains) amazing, but it was very easy for us to slip into the ‘Dependent’ and ‘Carer’ roles. It’s not so easy to slip out of them again, and frustrated both of us. So I have tried to make some changes. I am forcing myself to get up and do more. I am cooking at least once a week, without any help (it’s painful, but necessary, and I haven’t given anyone food poisoning yet). I am finding ways around problems. Can’t stand to iron? Lower the board right down, sit on the sofa, watch TV while you go. Sorted.

My body is a balancing act, in a number of ways. I need to be independent, but I need to accept help when I can’t be. I need to stay upright, but allow myself to sit down when I’m at risk of hurting myself. I need to keep mobile, but can use Ruby the Chair for this occasionally. And I’ll probably keep throwing myself on the floor randomly. You’d all get bored otherwise.

Pops and Ruby

Striking Accord

This piece was originally written for my Huffington Post blog (yeah, I’m a Huff Post blogger now, baby! http://www.huffingtonpost.co.uk/hannah-barhambrown/), on the day of the first Junior Doctors Strike. The issue may have gone quiet in the media, but much is still happening behind the scenes, and we still need the public to understand why, so here it is on this blog, in the hope that even more people will read, share, and inform using it. Thanks for reading.

“Lately, there has been a lot of talk about doctors ‘holding the NHS to ransom’, by striking in order to further line their own pockets. This may seem a bit rich if you’ve read The Sun recently. Doctors apparently live a champagne lifestyle. The amount of money they are alleged to have, I’m frankly disappointed that so few of them look like George Clooney. He looked great throughout his time in ER, and never held up a piece of taped up cardboard on a protest march. Oh George.

Even if that image of #MoetMedics were true (and as a future doctor, it sounds GREAT), this is actually about junior doctors standing up for their NHS. We love the NHS, which is why doctors stay in the UK (trust me, the pay and the hours are far better in Australia, and I’ve always fancied a beach body). It is more than simple Stockholm Syndrome – yes, it takes over our lives, it keeps us from our families, and we work bloody hard and spend scary-money to qualify. But we love it, because this is our NHS too. It cares for us, and THIS is why my qualified colleagues are striking. We all have relatives who are cared for by the NHS. I am disabled (though I prefer ‘wonky’), and spend a fair bit of time in hospital, both for work and my own care. Occasionally I forget whether I’m meant to be in the bed or wearing the stethoscope. Which could get awkward. I am grateful to doctors for striking, because they are doing it to protect patients like me, and future NHS employees, like me.

No doctor wants to strike. Frankly, it’s January, and picket lines aren’t exactly warm places to spend a day. But mainly, no one wants to let patients down. No one wants to see appointments or surgeries cancelled, because we all know how important these are to people. I was in hospital for five days post-op in December, and had I been postponed, I would have been livid, because it is such a big life event, whatever the operation. But in medicine, we have to balance short term and long term benefits every day. We won’t give you a drug that will make you feel great for a couple of days if it is going to do you serious harm in the future. The first rule of medicine; “Do no harm”, does not come with a timeframe. Strikes are a short term inconvenience, but emergency care will be there ready when needed, just like Christmas Day.

If we look to the long term, and the potential harm the NHS could suffer if this contract goes through, then that is far worse than this temporary inconvenience. That will cause far more harm to our patients than a few days of strikes. Exhausted doctors make mistakes, and boy, will we be exhausted. I wouldn’t want the surgeon who rebuilt my knee last month operating at the end of a twenty hour shift. No amount of espresso will make that safe, and while my knees aren’t the most reliable, I am rather attached to them, scars and all. If doctors work longer hours, and short-staffing gets even shorter, then mistakes are going to happen, and I don’t want that to involve me, whichever side of the doctor’s desk I’m sitting on.

I’m starting as a doctor in August. It’s meant to be scary, but it’s meant to be safe, manageable and worth all of the stress. But I’m actually scared to start because I have no idea what to expect, in terms of hours, support from other staff or the expectations that will be placed upon me. I like stress. I not only want to work in A&E, I want to do it parked in a wheelchair. I don’t make it easy for myself, but I expect my employers to make it safe and practically possible. And I deserve to be paid fairly for the work I do.

I don’t particularly like Moet. I’m happy with a pint in my local (once the bar staff have noticed my hand waving over the bar from my seated wheelchair position, and realised I’m not a child). I don’t expect to buy a house in London anytime before (or after) I retire. But I want to have kids and be able to afford childcare, and I want to help people. So that’s why junior doctors are on strike – so that, come August, we can do our jobs safely, and know that our loved ones will receive the care they need too. I cannot thank them enough for that.”

Being Patient – the Op.

I’ve been trying to reflect on my ‘patient experience’. Nearly everyone I have met in the month since seems to feel the need to point out how great a medic I will be having experienced a stay in hospital (4 nights, and boy, I was counting). And they have a point. Not that it will make me a great medic (there’s a bit more to it than that!), but that actually, it’s nothing like one expects. It is so so much harder. 

I had my op on a Monday. It was planned, and I had everything I could possibly need (and more) packed and ready. I had tried to resist working out my ASA score (a measure of anaesthetic risk), and when I arrived, my major concern was to see if I could avoid opiates if at all possible. I knew from bitter personal experience that me and Codeine and Tramadol were never going to be mates (no mate makes you projectile vomit tea. At least, no mate you should keep), and so I was pretty keen not to have a run in with their bigger, more aggressive cousin, Morphine. My lovely pre-op assessment nurse had assured me they would try to find an alternative. My anaesthetist was lovely but less optimistic; “You are going to need a PCA (Patient Controlled Analgesia) after the op. This is normally Morphine. I will give you Ketamine (yes, the horse tranquiliser) during the op, but afterwards it’s Morphine or Fentanyl, which is shorter-acting. I’ll think about it, but it will probably have to be Morphine. I promise I will load you with every anti-sickness I can though.” – anyone curious about my experience on Ketamine, will remain sorely disappointed; I’m afraid I wasn’t conscious! 

So far, so concerning. A lovely HCA (Healthcare Assistant) did a pregnancy test (not something I’d been told to expect, but not surprising), and after having a chat to a great SHO (who sweetly promised that he would personally remove any med students who tried to walk in – there are some things no potential drinking buddy should see), and then my consultant, I was donned in two hospital gowns (one backwards, one forwards), my incredibly attractive DVT stocking (only on non-operative leg, which rather ruined the look), and the all important netty knickers. If you learn nothing else from this blog, know this; they’re actually reasonably comfy. Just translucent. But trust me; NO ONE is looking (unless you’re a gynae case, when you’d probably rather they could see what they’re doing).

I said goodbye to BoyFace (who looked a wee bit nervous, and tried to follow me down the corridor…), and was whisked away by a lovely HCA and Porter, who chatted away merrily about their recent Christmas party. Anyone who doesn’t think Porters are some of the most important people in the hospital is a complete idiot. They are totally invaluable. They have an incredible ability to put you at ease, chatting away about anything, and that really helps. I was gently reminded that my op, my situation, was totally normal and mundane to them, and as such, probably not anything to worry about really. I did need that, and got an invite to next year’s party (and the amount of bubbly they apparently got through, I’m going!). 

Strangely, I was wheeled to an orthopedics theatre I knew. Strange, because I’ve only been in one at my hospital, and it was on my very first morning on Anaesthetics. My fantastic anaesthetic team (medic and Operative Dept Practitioner) put up with my nervous talking really well, and a cannula was inserted swiftly, despite my truly crappy veins. Having witnessed many anaesthetics, lying on the table staring at a poster outlining the procedure behind a Femoral Block was a pretty surreal experience, but it was certainly fast. The mask was held gently on my face, and I remember telling myself to take deep breaths to oxygenate the residual volume in my lungs – my control freak tendencies never leave – and the meds went in. I didn’t feel the ‘stinging sensation’ of the Propofol going up my arm, but the ‘double gin and tonic’ medication prior to that certainly made me go straight to the warm, woozy “Please don’t expect me to stand up” stage of drunk, so that may be why. That’s it. All I remember. No countdown, just going out like a light.

Next thing, I was awake, no breathing tube, in recovery, crying. All I wanted was for someone to phone BoyFace, so he could phone my mum as soon as possible. I knew she’d be a stressed out mess somewhere in the North-East, and all my drug and pain-addled mind could think of was telling her I was ok. Fortunately, one of the nurses was able to understand me amongst my tears and the bleeps and phoned B, who asked when he could come and see me. She misunderstood, and handed the phone straight to me. Apparently, I was not my normal, vaguely articulate self. Poor B had a good 5 mins of me crying, then trying to sound ok so he didn’t worry or worry my mum subsequently, then crying, then talking about how bloody hungry I was. Priorities, as ever.

The Morphine didn’t work. It took nearly 24 hours to work out a decent alternative (thank goodness for AMAZING Acute Pain Nurses), but while I was in Recovery, I kept having huge waves of pain that no amount of jabbing at the Morphine pump would cover. I wasn’t sick, thanks to the cocktail of anti-sickness the anaesthetist had pushed into me, but I was decidedly uncomfortable, and really didn’t want to be a bother, so had episodes of silent crying, until I got up to the ward and may possibly have fallen apart. Fortunately, one of my dearest friends was working on Trauma and Ortho, and came to see me in Recovery, and kept me calm. I have never been so grateful to see him. That Recovery period was the worst part of my entire stay but actually, in the grand scheme of things, it was ok. I knew I was safe, and while the pain was difficult, it was manageable. I was there for 3 hours, and the only patient they had in that entire time, so I certainly had help around if I needed it. My anaesthetist came to see me, I can’t remember the discussion, but the waves had become less frequent, so I was allowed to escape, and was taken up to the ward by another two utterly lovely porters who LOVED that I was a George’s Student and helped me start to feel normal again. I wish one of the recovery nurses had had time to chat to me in the same way. Distraction is a really useful tool in pain management, and one that was only utilised by the two total gents who moved me upstairs. They’re amazing, Porters.  

Pre-op and all labelled up…   
 
And my knee afterwards (gruesome photos in next post, promise!);

  
  

Handing over the controls…

“How does it feel to be a patient and not a medic?” asked my amazing night nurse, H*. She’s two years younger than me, also did nursing as a postgrad, and loves the idea of working in ED, like me. We’ve decided we’d run a great unit together. One day.

When she asked me this question last night, my answer was one of frustration, desperation and fear. I’d had 2 hours sleep in about 36, I had been in pain for the vast majority of those, and I was relearning how to complete simple tasks (bending my leg, hobbling, using the toilet, washing) in different ways, with little control over the how or when.

Control is something that I have come to guard fiercely, and a year of disability has probably made me more obsessed with its maintenance. I have become determined to get paperwork sorted, purchase a wheelchair that *I* was comfortable with (more on her later), and constantly battled with a need to prove myself as being just as good a clinician, albeit one with physical limitations. Control is the one thing I have struggled with in the last 48hrs (which feels like a week!), more than pain or sleep deprivation. I want to choose which drugs I get and when and why. I want to go to the toilet how and when I want to, without having to ask healthcare assistants to ask physiotherapists how I’m ‘allowed’ to mobilise, and wait an hour for a vague response. Frankly, spoilt brat-esque, I want things done on my terms, in my own time, as I ask, because that way I feel I still have some autonomy. Looking around, I realise other people are taking other approaches to losing this control. One patient has the nurse syringe all of her oral meds into her mouth for her (I fight to give my own Dalteparin injections), while she stays bundled in her blankets. She seems happier than me. Another has her family heavily involved in every decision, and is clearly reassured knowing that they are there for her, taking the weight. Neither of these approaches would work for me, but there is part of me that envies them. I have leapt between despair and anger (I was only anticipating the despair), and cannot have been easy to care for over the last two days.

I’m snapping at those who love me, and I know I’m driving them mad. Yet those who are caring for me here, who barely know me and have no reason to love me, care anyway. The thing is, that I really need them to do that. My priority has to be recovery, regaining function, and getting out of here. To best way to do that, if I’m honest with myself, is to allow them to care for my immediate physical needs while I focus on getting my physiotherapy completed, and out of here as soon as I safely can. In short, I need to stop sweating the small stuff and trust them to take it over. They’re not perfect, and I need to find a balance, but currently, I’m leaning away, fighting to be in charge.

From a health professional perspective, I need to be in control at all times. What we see on wards and theatres is actually bloody terrifying if we stop and think about it. Control is certainly my way of dealing with that fear; I need protocols, and rationales and a system. I have been trained to see healthcare as a partnership between patient and their care provider, but that doesn’t mean that the two share identical roles, or even that their priorities match; they never fully can. I wrote a dissertation on this partnership within the neonatal setting (it’s riveting stuff, I can tell you), but living it is a hugely different experience. I need to hand over the small stuff. I need to let the physiotherapy team tell me, based on their vast experience and training, what they need from me, and simply to do it. That’s the easy part (and I struggled with that), but there’s so much more. I have to prioritise, save my energy, and accept that these incredible staff, of whom we should all be so proud, will do everything else for me if needed (which often it is!), and if they don’t do it how I would, that is probably no bad thing. The chances are, they won’t.

The lovely tea lady has arrived with breakfast. I like a big steaming mug of tea, that I can allow to become lukewarm before frantically drinking it all down, of exactly the strength I prefer. You know what though? Lovely tea lady brings tea  in a plastic cup, a shade too strong, which is only ever Vesuvius-hot, or stone cold. But she brings it with a side order of political insight, bubbly conversation and a big smile at 0745, a welcome distraction from pain and nausea. I’d never get that from stepping into my kitchen alone. There’s a lot to be said for her method of making tea, and if I stop fighting to make my own, to control the minutiae, I get  other benefits. Handing over the controls isn’t easy, and I need to maintain some independence for my own sanity, to cope with what is ultimately a terrifying experience up close.

H the nurse probably oversimplified her question (though I probably needed it, thanks to drug-induced brain fog). I can never ‘just’ be a patient, or ‘just’ be a medic, and it would be impossible to separate the two, but I do need to loosen the reins. That way I can really take control of the key aims for me – getting better and getting out, with sanity intact.

 

Thank you.

While training as a nurse, I was introduced to the Swan metaphor. While appearing to glide gracefully across the water, not a feather out of place, a swan has to be kicking its feet like mad in order to get anywhere. I was told that that was how nurses were supposed to appear – calm and supportive, while behind the scenes, they were dashing around, furiously juggling all the tasks that came with patient care. I’m not sure I agree with this – I personally want a nurse who is honest about the pressure that they’re under, and who is supported through it to make every patient feel cared for. I’m not sure hiding stress is healthy. But boy, am I good at it.

This particular swan has not been very healthy of late. Rather than kicking like mad, I’ve been gliding along on a wing and a prayer (that’s enough bird images now, Pops), while pulling my legs in, desperately wanting to get off the bloody pool and hide in whatever the birdy-fetal position looks like. The irony of this is that at the same time, I’ve been more in the public eye than ever before, which has piled on the pressure.

Being gobby and opinionated, I’m reasonably happy in front of a camera. I never remember anything I’ve said afterwards until I watch the footage back, but otherwise, I don’t get too wound up by it.In fact, I enjoy it. In the last few weeks I’ve been filmed by BBC (though they never used it – Hugh Pym is off my Christmas list), ITV, London Live (x2), interviewed by LBC radio, and screening tomorrow (and yes, very controversially), George Galloway and his wife for Russia Today. I’ve had a lot of fun. If these legs of mine don’t manage a full time clinical career, medical media is something I’d love to do. Unfortunately, normal life doesn’t stop to allow this media malarkey to take place, and neither does my syndrome. The Junior Doctor Contract issues have hit me hard emotionally – I’m genuinely scared by it – and this hasn’t helped by trying a new pain medication.

I’ve been through a fair bit in my little life. I know fear, and a blinding, all-encompassing grief that steals your voice and deadens your soul. Loss and I are old acquaintances, and now he’s trying to take my mobility. Somehow, I have always put my head down and carried on. I have taken on projects that distract, surrounded myself with the love of incredible friends and family, and come out the other side. But over the few weeks, at least mentally, I wasn’t carrying on. Internally, I was hiding away, praying the world would leave me alone. I was finding excuses to avoid activities I would normally love, putting up barriers between myself and friends that may ask how I was, and behind a front of impassioned speeches to camera, I was coming home and crying for no reason. Sleep consisted of a few hours of tossing and turning, before fully waking up and lying for hours staring at the ceiling. Nothing I did, no amount of lovely comments (which are still nevertheless appreciated), or drastic haircuts could pull me round, and that was scary. Suddenly, I simply didn’t like myself, and to a worrying degree.

I started a new pain medication, Gabapentin, a few months ago. It has to be weaned up in small doses, and initially, I had no problems. I worked up to a highish dose, and stuck with it. I didn’t think about any particular issues, I just carried on. It was only after a particularly rough evening, when I promised BoyFace I would get some help, that I thought to look again at the side effects. Rarely, it can cause depression and even suicidal thoughts. I have never experienced Depression. I have loved ones who still spend time fighting off the Black Dog, and if it is anything like how I have found myself feeling recently, then if it were possible to respect them even more, I would. I’m slowly weaning my meds back down, and planning on seeing my GP next week. I’m already sleeping better – I’m not back to normal Pops yet, but I’m optimistic that I’ll get there.

I was not expecting much of a pick-me-up to come along anytime soon. Call it fate or serendipity, but at the most incredible time, I had one of the most incredibly uplifting and humbling experiences of my life.

I had been worrying about money again. I needed to fund my final year, I want to go abroad on my Elective this summer, and I needed a lightweight wheelchair, and soon. The chair was going to cost around £2000. The NHS was providing £140, a lovely charity £500, and the rest was down to me. I didn’t have an option, I was going to need to spend the money, and fast. I wasn’t coping with the physical aspects of work. I mentioned all of this (along with a photo of my new shiny wheels-to-be!) on Facebook, bemoaning the state of wheelchair funding nationally.

Within a couple of minutes, I had a message from a friend asking if he could contribute. Then others followed, asking for a crowdfunding page. It was really lovely, but I felt strange doing it myself, and bizarrely self-conscious. Then a wonderful best friend came to the rescue and made one for me. I wasn’t sure what to expect – maybe a couple of hundred quid at most, but anything would help at this stage.

What happened next I still can’t fully believe.

Suddenly, that page became, as my housemate declared, ‘clickbait’. People I knew well, people I’d met years previously, and even people I’d never met or heard of before, were donating. Friends were making me and my page their Facebook statuses, asking their friends to spare a few quid. Others were taking the time to message me, to say that they weren’t able to donate, but wishing me all the very best.

In less than 20 hours, I had £1500. Currently I’m on £1750 on the page, with a £100 private donation. This is more than I need, and I’m going to ensure that decent chunk goes to Wheelchair Foundation (http://www.wheelchairfoundation.org/), a charity which gives chairs to people around the world who wouldn’t get them otherwise. No one should have to use a skateboard as a wheelchair, or be carried everywhere by a relative, but that actually happens in some countries.

There are genuinely no words for how I feel. All I have is an incredibly huge, heartfelt, thank you. At one of the lowest times of my life, I suddenly had one of the biggest surges of support, and no one even knew how tough I was finding life at the time. It was just pure generosity, unwittingly when emotionally, I really needed it most. It has become so much more than a set of wheels (needed though they are). It has become an incredible show of love and care when I most needed it.

If I ever was a swan, (and let’s face it, it’s not the first creature one thinks of when presented with my chubby little face), I’m not quite back to full kicking yet. But thanks to a group of incredible people, I’m still gliding, and will continue to do so. Thank you. Thank you so so much.

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