There are a few moments that I can pick out of the last few years which have really defined for me the kind of doctor that I want to be. This happened one rainy summer afternoon, while I sat in the corner of a clinic room and watched. You do a lot of watching as a medical student - watching and listening, picking things up from the doctors, trying them on for size - a phrase, a way of asking or explaining.
The striking thing about that afternoon was that we had two patients, both women of a similar age, living with the same condition, affected by it in a similar way.
The first lady was explaining that because her mobility was getting worse, her family had bought her a wheelchair and were pestering her to use it - not all the time, just for days out. They would get frustrated with her when she would insist on walking, slowly. Walking to her was independence and freedom - she recognised that one day soon she wouldn't have a choice, but for now she was refusing to use it.
The doctor listened to her, and nodded and told her that she was doing a great job advocating for her needs and wants to her family- that she should continue listening to her body and doing what was best for her health and wellbeing.
The next lady told us that because her mobility was getting worse she had bought herself a wheelchair - not to use all the time, just for days out. She was frustrated with her limitations on foot and felt that the wheelchair gave her back her independence and freedom. Her family were embarrassed that she would use a wheelchair when she was able to walk and kept trying to persuade her not to use it.
Again the doctor listened and nodded. He told her that she had done really well listening to her body and finding a solution that was best for her and encouraged her to keep talking to her family about how the chair was helping her.
This encounter really struck me - obviously, sometimes in medicine there is a right and a wrong answer - a specific treatment to fit a specific diagnosis. Often though - more often then I ever anticipated before starting my clinical placements - there are choices to be weighed and decisions to be made. A knee replacement may improve your mobility, but there are risks and complications and recovery to consider. Warfarin might help prevent stroke in AF, but if you're prone to falling over and knocking your head it's probably not the drug for you. We have guidelines and risk calculators, we can draw pros and cons lists, we can advise and suggest, but at the end of the day it's the patient's decision.
And people want to know that they're making the right choice. They ask what we would do if it were us - and I'm drawn back to that room, that afternoon - listening to your body and advocating for your needs and finding the solution that is best for you.
As a patient, it is really important to me that doctors affirm my choices about my health and the hard work that I put into staying healthy. I think that's because, in doing so, they see me as a person and not a diagnosis.
At Both Ends of the Stethoscope.
Wednesday, 5 February 2014
Monday, 16 September 2013
Outpatient Clinic
My wife is currently the psych SHO and last night she was worrying out loud at having her very own patient in today's outpatient clinic for the first time. She was thinking about a family sitting somewhere in the city also worrying about the appointment - would the doctor listen? what would the verdict be? is there anything they can do?
She asked me, as someone who frequently panics at her about upcoming appointments and debriefs with her afterwards, what she should do to make the clinic a good experience for the patient.
I told her that the fact she was aware how much of a big deal this appointment would be for the patient and their relatives was probably half the battle. My main tips were :
- (you can guess what I'm about to say I'm sure) Listen to me. In particular listen to what their concerns are - for example, if I am telling you that the main problem currently is fatigue then you need to address that as well as anything you identify as priorities, such as mobility or falls.
- Form your management plan in discussion with me. There is no point you prescribing something I'm not going to take or referring me to a physio I'm not going to see. Please try and understand that I am not being deliberately obstructive when I tell you I am not willing to take a drug with a particular side effect etc. I have that right, even if you believe that in my position you would choose differently.
- Specifically ask me if I have any questions about or problems with the management plan. Sometimes even the most assertive person needs permission to question an authority figure (which is how most of your patients will see you).
- Also ask if there was anything I wanted to bring up in the appointment that I haven't had the chance to mention. This is my once in a year opportunity to get your opinion, please let me make the most of that.
- Send me a copy of the letter you send to my GP - it's basic courtesy.
- Also, if you don't have a head for details I would *much* rather you take notes during our appointment than you send out a letter full of inaccuracies. To put this in perspective, I have never had an entirely accurate outpatient letter. I have had a letter which has listed 'hypothyroidism' as my only past medical history, when I have never had it, but have really quite a few other relevant conditions, letters claiming I take no medication etc. Worse than inaccuracies, are the fabrications "she appeared depressed and we discussed that her mood has been low". We didn't.
Try and put yourself in my shoes - this is a condition I am living with day in and day out - this is my one chance to talk to the doctor who manages it. Each appointment is a really big deal.
May I also recommend the excellent post on the same subject from Anya at The Patient Patient who is much more articulate on this subject that I have managed here.
She asked me, as someone who frequently panics at her about upcoming appointments and debriefs with her afterwards, what she should do to make the clinic a good experience for the patient.
I told her that the fact she was aware how much of a big deal this appointment would be for the patient and their relatives was probably half the battle. My main tips were :
- (you can guess what I'm about to say I'm sure) Listen to me. In particular listen to what their concerns are - for example, if I am telling you that the main problem currently is fatigue then you need to address that as well as anything you identify as priorities, such as mobility or falls.
- Form your management plan in discussion with me. There is no point you prescribing something I'm not going to take or referring me to a physio I'm not going to see. Please try and understand that I am not being deliberately obstructive when I tell you I am not willing to take a drug with a particular side effect etc. I have that right, even if you believe that in my position you would choose differently.
- Specifically ask me if I have any questions about or problems with the management plan. Sometimes even the most assertive person needs permission to question an authority figure (which is how most of your patients will see you).
- Also ask if there was anything I wanted to bring up in the appointment that I haven't had the chance to mention. This is my once in a year opportunity to get your opinion, please let me make the most of that.
- Send me a copy of the letter you send to my GP - it's basic courtesy.
- Also, if you don't have a head for details I would *much* rather you take notes during our appointment than you send out a letter full of inaccuracies. To put this in perspective, I have never had an entirely accurate outpatient letter. I have had a letter which has listed 'hypothyroidism' as my only past medical history, when I have never had it, but have really quite a few other relevant conditions, letters claiming I take no medication etc. Worse than inaccuracies, are the fabrications "she appeared depressed and we discussed that her mood has been low". We didn't.
Try and put yourself in my shoes - this is a condition I am living with day in and day out - this is my one chance to talk to the doctor who manages it. Each appointment is a really big deal.
May I also recommend the excellent post on the same subject from Anya at The Patient Patient who is much more articulate on this subject that I have managed here.
Thursday, 5 September 2013
Fall Down 7 Times, Get Up 8
That is what I say in my head when I find myself on the floor. Legs got wobbly, head got dizzy, knee got dislocated and bam. There I am. On the floor again.
I have fallen on average at least once a day since my 2nd year of university. 6 years, 2190 falls. I've never done that maths before, but I feel it. I feel it every time I find myself on the floor, fighting the fog in my head, trying to make sense of where I am and who I am and which way's up. Assessing the damage, replacing runaway joints. Sometimes persuading random folk not to call an ambulance or crawling out of the road.
And then I just lie there. My body feels like lead, my head like cotton wool. My brain can't think of the words and my mouth can't form them. My heart is thumping and my head hurts and everything hurts. Getting up again feels impossible.
One of two things happens next. I shout, I swear, I hit the floor. I curse my body that has betrayed me again, I curse my doctors who have left me like this, I curse the falls clinic that only sees over 65s and the physio who can't see me because the rheumatologist discharged me and the 1 year and 5 months I've been on the waiting list for a social services assessment. I curse gravity.
Or I curl up into a little ball and cry. I cry because I'm scared and it hurts and it feels bad in ways that I can't describe to someone who doesn't know what it feels like when you don't have enough blood supply to places that need it. Sometimes I lie there for hours because I keep trying to stand and keep falling straight back down again. I cry because there is no way I can clamber my way back up again only to fall. Again. I cry because these few moments of 'no more' are as close as I can get to giving up in this situation.
There is no giving up. Fall down 2190 times. Get up.
I have fallen on average at least once a day since my 2nd year of university. 6 years, 2190 falls. I've never done that maths before, but I feel it. I feel it every time I find myself on the floor, fighting the fog in my head, trying to make sense of where I am and who I am and which way's up. Assessing the damage, replacing runaway joints. Sometimes persuading random folk not to call an ambulance or crawling out of the road.
And then I just lie there. My body feels like lead, my head like cotton wool. My brain can't think of the words and my mouth can't form them. My heart is thumping and my head hurts and everything hurts. Getting up again feels impossible.
One of two things happens next. I shout, I swear, I hit the floor. I curse my body that has betrayed me again, I curse my doctors who have left me like this, I curse the falls clinic that only sees over 65s and the physio who can't see me because the rheumatologist discharged me and the 1 year and 5 months I've been on the waiting list for a social services assessment. I curse gravity.
Or I curl up into a little ball and cry. I cry because I'm scared and it hurts and it feels bad in ways that I can't describe to someone who doesn't know what it feels like when you don't have enough blood supply to places that need it. Sometimes I lie there for hours because I keep trying to stand and keep falling straight back down again. I cry because there is no way I can clamber my way back up again only to fall. Again. I cry because these few moments of 'no more' are as close as I can get to giving up in this situation.
There is no giving up. Fall down 2190 times. Get up.
Saturday, 17 August 2013
Double Life
Hello everyone =] Hope you're all enjoying your weekend. I finished my first week of work! (Having thought up until a couple of days before that the paperwork wouldn't be ready in time)
As I'm a 50/50 jobshare I worked the longest stretch I will be working (Weds, Thurs, Fri and then Mon, Tues) and I survived.
It comes at a cost though. I knew it would, I knew what I was getting into - but it's really strange. At work I may look disabled - what with the wheelchair and everything - but I don't look sick.
People don't see me in the evenings when I get home and I'm too tired to hold my own head up, or I get drooly from 'stroke face', or I rock my own personal blend of dysarthria and dysphasia, or I faint mid sentence. They don't see that I've spent the last two days lying flat because my pelvis is (sorry if this is a complicated medicalism that goes over your head) utterly buggered or that my joints are all over the place because my muscles are worn out.
I mean, obviously they don't. My health stuff isn't my patients' or colleagues' business. It's just very strange. It feels a bit like I'm pretending somehow. Sometimes the adrenaline carries me through and pretty much as soon as I leave the ward I'm on the point of collapse. I wonder if they wonder why I'm part time because when I'm there I am (wheelchair aside) no different to my colleague. Or, am I kidding myself - does the wheelchair make me look sick to them anyway? I just don't know.
I don't suppose it matters in the scheme of things and I am *so* grateful to have started (even if I did write TWENTY discharges on Monday), but it's driven home just how different an experience of this I'm going to have to the people I work with. I know that people get beyond tired during FY1 and that it is not without a lot of payback for even healthy full timers, but this is different. It's also a bit weird because the ward I'm on most of the patients are pretty healthy as it's mostly elective surgery. I loosely judge the complexity of a patient's case based on how many medications they take in comparison to me (not in any official or serious way) and there's only been one patient on more meds so far.
In part this year will be an experiment. Rather than pacing activity on a day by day basis (balancing energy expenditure over the day) I'm moving to a doing more for a couple of days and totally resting another couple of days. I'm not entirely sure what this will be like physically, but for now it seems to involve this double life, this seeming normality and then the payback.
As I'm a 50/50 jobshare I worked the longest stretch I will be working (Weds, Thurs, Fri and then Mon, Tues) and I survived.
It comes at a cost though. I knew it would, I knew what I was getting into - but it's really strange. At work I may look disabled - what with the wheelchair and everything - but I don't look sick.
People don't see me in the evenings when I get home and I'm too tired to hold my own head up, or I get drooly from 'stroke face', or I rock my own personal blend of dysarthria and dysphasia, or I faint mid sentence. They don't see that I've spent the last two days lying flat because my pelvis is (sorry if this is a complicated medicalism that goes over your head) utterly buggered or that my joints are all over the place because my muscles are worn out.
I mean, obviously they don't. My health stuff isn't my patients' or colleagues' business. It's just very strange. It feels a bit like I'm pretending somehow. Sometimes the adrenaline carries me through and pretty much as soon as I leave the ward I'm on the point of collapse. I wonder if they wonder why I'm part time because when I'm there I am (wheelchair aside) no different to my colleague. Or, am I kidding myself - does the wheelchair make me look sick to them anyway? I just don't know.
I don't suppose it matters in the scheme of things and I am *so* grateful to have started (even if I did write TWENTY discharges on Monday), but it's driven home just how different an experience of this I'm going to have to the people I work with. I know that people get beyond tired during FY1 and that it is not without a lot of payback for even healthy full timers, but this is different. It's also a bit weird because the ward I'm on most of the patients are pretty healthy as it's mostly elective surgery. I loosely judge the complexity of a patient's case based on how many medications they take in comparison to me (not in any official or serious way) and there's only been one patient on more meds so far.
In part this year will be an experiment. Rather than pacing activity on a day by day basis (balancing energy expenditure over the day) I'm moving to a doing more for a couple of days and totally resting another couple of days. I'm not entirely sure what this will be like physically, but for now it seems to involve this double life, this seeming normality and then the payback.
Friday, 5 July 2013
Happy Birthday NHS
The NHS is 65 today.
What the NHS has done for me :
1) Employed my mum through pregnancy/my first few years (she was a ward sister, midway through labour they had to bring the new dialysis machine down to the delivery ward so she could show them how to work it)
2) Helped me/my mum through a difficult delivery and scanned my massively large head to make sure it wasn't hydrocephalus
3) Treatment for my nasty childhood asthma including some pretty scary attacks
4) Specialist physio for my eye muscles (anyone else? eye patches and trying to fit the sentry in the sentry box and the apple in the tree?)
5) Took me in a nee-naw to get a Cspine xray after I fell head fist off a trapeze
6) Hearing tests leading to tonsil/adenoidectomy + grommets (or tympanostomy tubes as we're now supposed to call them)
7) Years of treatment for depressive episodes
8) Putting me back together after suicide attempts
9) 6 weeks of crisis support
10) A year of weekly psychotherapy
11) A diagnosis, 10 weeks of rheumatology specialist physio and 10 weeks of hydrotherapy
12) Occupational therapy and hundreds of pounds worth of equipment allowing me to maintain independence, safely, at home
13) Orthotics to hold my wobbly joints together
14) 1 Tilt table test, 1 echo, 1 24 hour ECG and lots of regular ECGs
15) 2 Endoscopies, 1 Gastric Emptying Scan and 1 Abdominal Ultrasound
16) An ABG to check for Carbon Monoxide poisoning
There have been mistakes and there are problems, but I'll save those for another day.
I have been a patient at 16 hospitals, treated by countless doctors in 13 specialities, as well as specialist nurses, specialist physios, occupational therapists, orthoticists, dentists and opticians. I have received free or subsidised prescriptions every month for 23 years - including at least 30 different medications.
When I've had an infection or an accident or a flare, I've had the ambulances, Xrays, medications and admissions I've needed without worrying about my ability to pay.
Not to forget the other folk who've been involved in keeping me healthy - GP receptionists and ward cleaners, lab techinicians and epidemiologists, researchers, campaigners, paramedics. All the people that help keep the NHS ticking over.
If it weren't for the NHS I don't know if I'd have made it to 25 and there are people very dear to me who definitely wouldn't be around today without free, expert healthcare.
And now they've given me a job. There is no organisation in the world I could be prouder to work for.
Happy birthday NHS, and thank you.
What the NHS has done for me :
1) Employed my mum through pregnancy/my first few years (she was a ward sister, midway through labour they had to bring the new dialysis machine down to the delivery ward so she could show them how to work it)
2) Helped me/my mum through a difficult delivery and scanned my massively large head to make sure it wasn't hydrocephalus
3) Treatment for my nasty childhood asthma including some pretty scary attacks
4) Specialist physio for my eye muscles (anyone else? eye patches and trying to fit the sentry in the sentry box and the apple in the tree?)
5) Took me in a nee-naw to get a Cspine xray after I fell head fist off a trapeze
6) Hearing tests leading to tonsil/adenoidectomy + grommets (or tympanostomy tubes as we're now supposed to call them)
7) Years of treatment for depressive episodes
8) Putting me back together after suicide attempts
9) 6 weeks of crisis support
10) A year of weekly psychotherapy
11) A diagnosis, 10 weeks of rheumatology specialist physio and 10 weeks of hydrotherapy
12) Occupational therapy and hundreds of pounds worth of equipment allowing me to maintain independence, safely, at home
13) Orthotics to hold my wobbly joints together
14) 1 Tilt table test, 1 echo, 1 24 hour ECG and lots of regular ECGs
15) 2 Endoscopies, 1 Gastric Emptying Scan and 1 Abdominal Ultrasound
16) An ABG to check for Carbon Monoxide poisoning
There have been mistakes and there are problems, but I'll save those for another day.
I have been a patient at 16 hospitals, treated by countless doctors in 13 specialities, as well as specialist nurses, specialist physios, occupational therapists, orthoticists, dentists and opticians. I have received free or subsidised prescriptions every month for 23 years - including at least 30 different medications.
When I've had an infection or an accident or a flare, I've had the ambulances, Xrays, medications and admissions I've needed without worrying about my ability to pay.
Not to forget the other folk who've been involved in keeping me healthy - GP receptionists and ward cleaners, lab techinicians and epidemiologists, researchers, campaigners, paramedics. All the people that help keep the NHS ticking over.
If it weren't for the NHS I don't know if I'd have made it to 25 and there are people very dear to me who definitely wouldn't be around today without free, expert healthcare.
And now they've given me a job. There is no organisation in the world I could be prouder to work for.
Happy birthday NHS, and thank you.
Sunday, 30 June 2013
Starred Items
Just made my way through my Google Reader starred items, in time for its demise tomorrow.
It was quite emotional.
The posts about medicine that capture the essence and the art of it.
The post written to me when I was at my very lowest point.
The posts that taught me it was alright to be myself - disabled, queer, fat, female.
The posts that taught me that it is so much more that alright to be myself.
The post announcing the start of my minister's journey with cancer.
The post celebrating the end of her chemo.
The posts that introduced me to amazing disability equipment.
The post that led me to my bright purple compression stockings.
The posts that capture my faith in words (and pictures).
The post announcing the arrival of my beloved kittycat.
The post from the blog that's no longer updated.
The post from the blog I stopped following.
The posts that help me to be a better ally to my trans and BME friends and patients.
The post with the gif of the tiny kitten that jumps up on the bed and boops him on the nose.
The posts that made me laugh.
The posts that made me pray.
The posts that made me rage, cry, learn, think.
I'm sitting here thinking about all the blogs I've followed over the years. Thankful for the window into people's lives, thankful for the chance to share important ideas, thankful for the silliness, thankful for the community. Hoping that those who're now longer updating are doing well.
It was quite emotional.
The posts about medicine that capture the essence and the art of it.
The post written to me when I was at my very lowest point.
The posts that taught me it was alright to be myself - disabled, queer, fat, female.
The posts that taught me that it is so much more that alright to be myself.
The post announcing the start of my minister's journey with cancer.
The post celebrating the end of her chemo.
The posts that introduced me to amazing disability equipment.
The post that led me to my bright purple compression stockings.
The posts that capture my faith in words (and pictures).
The post announcing the arrival of my beloved kittycat.
The post from the blog that's no longer updated.
The post from the blog I stopped following.
The posts that help me to be a better ally to my trans and BME friends and patients.
The post with the gif of the tiny kitten that jumps up on the bed and boops him on the nose.
The posts that made me laugh.
The posts that made me pray.
The posts that made me rage, cry, learn, think.
I'm sitting here thinking about all the blogs I've followed over the years. Thankful for the window into people's lives, thankful for the chance to share important ideas, thankful for the silliness, thankful for the community. Hoping that those who're now longer updating are doing well.
Wednesday, 19 June 2013
Occupational Health
Hello!
There is no point trying to play catch up after all this time so I'll just dive right on in!
This morning, with 7 weeks left until I'm supposed to start work I had an occupational health assessment. I was dreading it! So far there's been the med school handing over to the deanery meeting when I was asked (having just passed the same exams as everyone else) whether I felt I could *really* expect to work to the speed and standard of my colleagues and that I would have to guide them because they're not used to dealing with "people like me". Then because I had to take the year out because access provisions move at glacier pace I have to be investigated by the Gee Em See before they'll grant me provisional registration and they can't guarantee that if the relevant people don't get back to them promptly might not happen before I'm supposed to start work - and because the health board can take 3 months to decide on less than full time training there could be a delay which is in no way my fault. Oh, and my house burned down 3 days after finals.
I just want to do the job I have spent 7 years training for and have qualified for and have in fact been given (but not quite because all of the above).
So, today I saw Dr Occy Health. He took a thorough history - asked which type of Hypermobility Syndrome I have and made the link between dysautonomia and gastroparesis all by himself. He was horrified by all of the aforementioned nonsense and took names and numbers to chase things up.he thanked my partner for coming rather than being strangely confused that someone may need moral support at a big deal appointment. He took a fatigue and pain history which is not only rare of itself but he did it well and in a way that made it sound like he believed I experienced those things. I could go on but you get the idea.
If you are reading this and don't think 'wow!' you either are or have a good doctor. It shouldn't be worthy of comment when an appointment leaves you feeling better, or at least not worse, than you did when you arrived.
7 weeks to go.
There is no point trying to play catch up after all this time so I'll just dive right on in!
This morning, with 7 weeks left until I'm supposed to start work I had an occupational health assessment. I was dreading it! So far there's been the med school handing over to the deanery meeting when I was asked (having just passed the same exams as everyone else) whether I felt I could *really* expect to work to the speed and standard of my colleagues and that I would have to guide them because they're not used to dealing with "people like me". Then because I had to take the year out because access provisions move at glacier pace I have to be investigated by the Gee Em See before they'll grant me provisional registration and they can't guarantee that if the relevant people don't get back to them promptly might not happen before I'm supposed to start work - and because the health board can take 3 months to decide on less than full time training there could be a delay which is in no way my fault. Oh, and my house burned down 3 days after finals.
I just want to do the job I have spent 7 years training for and have qualified for and have in fact been given (but not quite because all of the above).
So, today I saw Dr Occy Health. He took a thorough history - asked which type of Hypermobility Syndrome I have and made the link between dysautonomia and gastroparesis all by himself. He was horrified by all of the aforementioned nonsense and took names and numbers to chase things up.he thanked my partner for coming rather than being strangely confused that someone may need moral support at a big deal appointment. He took a fatigue and pain history which is not only rare of itself but he did it well and in a way that made it sound like he believed I experienced those things. I could go on but you get the idea.
If you are reading this and don't think 'wow!' you either are or have a good doctor. It shouldn't be worthy of comment when an appointment leaves you feeling better, or at least not worse, than you did when you arrived.
7 weeks to go.
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