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.

In the Middle : Biopsychosocial Model

 This is an interesting topic for me as a medical student and a disabled person, because both groups use the phrase to mean different things, one is seen as a positive thing and the other a negative. I thought I would write this post as a 'translation' of sorts - because I have seen it lead to misunderstandings or arguments. It is almost a 'false friend' situation for the linguists amongst you.

The biopsychosocial model (henceforth BPS) has an understandably bad reputation amongst disabled people. It has been used by many to suggest that people are not impaired by biological disease, but rather by psychological beliefs that they are sick, and therefore as an excuse to deny medical treatment, insurance coverage or benefits applications. These alleged psychological beliefs are of course not deemed 'proper disease' enough to merit psychological treatment, so people are left being told that their illness is 'all in their head' and therefore they just need to pull themselves together.

Before my diagnoses I was frequently told that fatigue, joint pain, dizziness etc was all in my head and therefore that I should ignore it and push through. I asked on several occassions why, if I had a psychological disease I was not being given psychological treatment. (Doctors need to get better at saying 'I don't know'.) There is obviously a lot of hurt and frustration felt by sick/disabled people who have been dealt with in this way. Or, people are 'diagnosed' with social problems, which often intertwines with the 'illness behaviour' narrative - e.g. you are not working therefore you sit at home and worry yourself into being ill, for which the obvious cure is to threaten people on benefits to the point that they no longer live the comfortable, shelterd life which the government seems to think benefit claimants have.

It is however, used in another way. The BPS model has been introduced into some medical schools / postgraduate training as a way to remind doctors that there is more to caring for a patient than the medical model. The medical model is basically 'you have broken your arm, we need to pin it and put it in a cast' or 'you have an infection, you need antibiotics'. It is very much the model that you want doctors to be using when you are being resuscitated after a car crash, but once the immediate danger has passed there are other aspects to consider.

So, as a reminder that a biological disease process (let's say Parkinson's) will have more than purely biological effects. It has psychological effects - in the case of Parkinson's both psychological symptoms such as depression and the general 'reactive' psychological effects that can come with any chronic illness - adjustment to new symptoms, traumatic medical experiences etc. There are also many social effects that come from having a chronic illness - the stigma of appearing drunk for example, as some with Parkinson's can do, the fact that the world is not accessible and is therefore disabling (so we include 'social model' thinking which states that people are not intrinsically disabled, they are disabled by their environment - e.g. stairs with no lift alternative disable some folk with mobility impairments, expectations that a normal working day is 9-5 5 days a week disables folk with chronic fatigue or frequent hospitalisations/medical appointments).

The BPS model was introduced in this context to remind doctors that it is not necessarily enough to give folk some tablets and send them away. The multidisciplinary team (ooh, I get points for using the buzzwords!) is given the recognition it deserves in this context - OTs, Social Workers, chronic illness psychologists (yes, I'm told they do actually exist but I've never seen one in the wild).

In my mind the BPS model as applied this way is a very good thing for chronically sick/disabled people, because it is a much more 'holistic' model than the medical model used in isolation (and I hope it's clear that I think the 'it's all in your head' use of the BPS model is very damaging).

Any thoughts?

Chronic Pain - What to Say

We were having some chat on twitter last night about chronic pain. People made a lot of interesting points and I'm brewing another post that uses those, but I was asked a question by @Tricia_the_doc which I thought was a good place to start : "What are the best tips you can offer docs in terms of things to do or say? (I can guess some of the don't do things!)"

It's an interesting question, because as with many things I am much better at talking about what not to do. With some general disclaimers that this is based on my experience as one person with chronic pain and that others might completely disagree, I came up with the following.

1) And this one is for both 'sides' of the conversation - it's important to recognise the barriers created by previous bad pain management.

As a patient, I recognised that I feel defensive whenever a doctor mentions my pain medication, because so many times in the past I've been told that I don't need it / I'm too young for it / I have a low pain threshold (which is a very stupid reason to deny painkillers) / I'll get addicted etc.

When doctors believe that I'm in pain I am able to relax into a conversation about pain management without worrying that the subtext of the discussion is 'You're not in pain so I'm stopping your painkillers', in the same way that I can have a calm and rational discussion about changing the dose of my asthma inhalers.

I get anxious when doctors threaten to stop my painkillers because I am in pain. The painkillers I use make the pain bearable most of the time. Without them I am in constant, unbearable pain - the kind of pain that sends you out past screaming into practical catatonia. Without meaning to be hyperbolic, threatening to stop my medication is essentially threatening me with torture. So yes, I am anxious.

I would like my doctors to recognise that it is normal for me to feel defensive and anxious about my pain management. Sometimes if I talk to a patient who I sense is becoming defensive in a similar way, I will say 'I believe that you are in pain - I'm asking these questions to get to the bottom of it, not because I'm trying to catch you out'.

2) The tricky bit of chronic pain management of course is patients who you suspect are misusing pain medication in some way - becoming addicted, selling it etc. As someone with chronic pain I am inclined to say that this is not my problem and certainly I believe in erring on the side of caution - I think that I would rather unnecessarily treat someone not in pain than not treat someone who is. However, I also understand that 'drug seeking' wastes time and resources as well as putting people's health in danger.

If a doctor were to think that I was misusing my medication I would appreciate an open conversation with them about it - expressing concern for my wellbeing, offering support, suggesting alternatives - and remembering that many people who misuse pain medication do actually have underlying chronic pain.
3) It is rare for doctors to make positive suggestions about my pain management. Far more likely (most doctors I visit) is for doctors to suggest removing elements of my treatment without asking me what my pain is like or how well controlled it is on my current plan.

If you genuinely think that I might get better results from another medication then I would definitely like to hear about it! However, because of aforementioned anxiety, it would be great for you to make clear that it is my decision and that if it does not work you will re-start my previous medication. Ditto, if you think that I could still be well maanged at a reduced dose because my condition has improved.

A specific word r.e. paracetamol - a lot of my friends on being told that they should take regular paracetamol alongside stronger meds think that this is a sign the doctor hasn't understood how bad their pain is. Make extra clear that paracetamol is actually very effective (even though it can be used for mild pain, that doesn't mean it is a weak drug) and that it enhances the stronger medications.

Non drug treatments are also useful - especially things like mindfulness practice which help people to cope with experiencing pain (the aim of chronic pain management is to manage pain, not to remove it entirely). Please make it clear if you mean this as an adjunct to drug therapy rather than a replacement. See point 1!

If you have anything to add or you have a different perspective, please feel free to share =]

All At Once

 This is not my most succint post - more of a thought exercise than anything else. I'd be interested to read your thoughts on the subject if you'd like to comment.

Chronic illness is a funny old thing.

In my time on the wards the last few weeks I've talked to a few patients who have been diagnosed with illness or impairment less severe and less disabling than my own but who are receiving intensive, inpatient treatment whilst I am currently 'only' under the care of my GP.

It is hard in my situation not to compare my own experiences with those of the patients I interact with, and I don't believe it is inappropriate as long as it is an occassional ponder on my own time and that if it does affect my interaction with the people I come across as patients, it is in a positive way (for example to remember that I am not a good historian when I am upset and in pain, which helps me to be patient with someone in a similar situation).

Comparisons are of course difficult (especially between different conditions/symptoms) and mostly subjective, but for this train of thought exact comparisons aren't really the point. Nor is the point to downplay these folks' experiences or to suggest that their care is inappropriate, as I don't believe that it is.

The point (finally) is to reflect on the difference between acute and gradual onset of chronic illness or impairment. There are two similar topics that you will have read/heard a lot about if you've been hanging about the sick/disabled blogosphere for a while :
- invisible vs visible illness/impairment
- congenital (from birth) vs acquired illness/disability

I don't hear/read a lot about this particular topic, although it falls in to the same category of illustrating the diversity of experience within our community. It also lends itself to the same 'which situation is better?' philosophising. (Spoiler : tends to come down to 'both have pros and cons' or 'better the devil you know')

It is strange to know that if I had woken up today in this state having gone to bed yesterday perfectly healthy, I would be in hospital now - yet over the course of all of this I have only once been inpatient (impatient is another matter...). This is attributable in various parts to :
- good fortune on my part - some other folk with my conditions are much more severely affected than I and require long stretches in hospital
- medical knowledge, social support, good primary care and accumulated experience and equipment which allow me to manage things at home which I would otherwise need to be admitted for
- and, not so good, some very bad calls made by previous members of my healthcare team

I see these people whose lives have been transformed in an instant and their experience is both entirely familiar and entirely alien.

When I first used a wheelchair, it was an indescribable relief because it dramatically increased what I was able to do and where I was able to go - yet to someone who has suddenly lost the use of their legs using a wheelchair often dramatically restricts their mobility (especially at first).

I have been on regular medication since I was a child. I didn't go from nothing to 22 tablets a day overnight. I am used to the routine of ordering repeats, setting reminders, carrying meds around with me. I am used to balancing side effects with therapeutic benefit. I am used to justifying my use of pain killers to any doctor who vaguely decides I am too young for opiates.

I am used to the restricted diet, to constant pain and nausea, to needing to assert my right to adaptations. I am used to doctors touching my body and to stripping my entire existence down to a list of relevant symptoms. I am used to the paperwork, to complete strangers asking personal medical questions, to needing help with 'basic' things. I am used to putting on a public face because even people who ask how I am don't necessarily want to know.

I have learned these lessons gradually, often the hard way and by making mistakes. I have been mostly taught by other sick and disabled people, including those in my online community. I have had very little multidisciplinary input considering the combined impact of my conditions - and the care that I have received has generally been a fight to access.

I think the learning curve would have been greatly steepened in an acute situation. I think my understanding of the situation would be more medicalised at first if I had been learning how to be in this new body from healthcare professionals rather than from other sick/disabled people. I would have had physio, OT, orthotics and social work involvement from the word go (at least in theory), rather than in a haphazard way.

As for grief and acceptance I am not sure. I know that sometimes it feels easier when a lot of things change all at once and then the dust settles, you can evaluate where you're at and start to move forward. Sometimes it is easier when things happen bit by bit, giving you a chance to catch up and learn to cope with each step. Sometimes it helps to not have a 'normal' before to compare to - I have always been sick to some extent.

I see this process as a journey rather than a binary state. It is amazing in the magnitude of serious illness and disability what it is that really makes you break down. A couple of weeks ago I had a really bad day of grief because I was finding being gluten free so difficult, when in the scheme of things - even the big picture of my dietary restrictions - it's not that big a deal.

And by the way, the things I said I'm 'used to' - it's not quite as simple as that. I suppose I mean that often I can do or experience those things without thinking much about it. Thursday nights I sit down with my dosette box and dole out my pills. Strangers ask what's wrong with me and I say 'that's a very personal question that I'd rather not answer' or 'I have a problem with my joints' depending on situation. But sometimes these inconsequential things are quite unbearable. I can't stand the thought of the BP cuff inflating around my arm one more time. My everyday pain levels are suddenly just too much to cope with.

 My take home thoughts are these :
- Acute management is much better than chronic illness management as a general rule. Initial care tends to be better for something that happens 'all of a sudden', but then we all tend to end up in the same slightly leaky boat.
- Tied to this, community access to multidisciplinary support (physio, social work...) needs to be a lot better and easier.
- No matter the speed of onset, chronic illness/disability will often entail a period of adjustment and some degree of grief.
- A really positive aspect of chronic illness/disability can be to share experience/advice/support with individuals who find themselves in the same situation - especially in an 'all of a sudden' context.

Infection Control Revisited

I survived my first placement =] It went well all things considered. I was worried that I woud be rusty after my year out, or that adjusting to working from the wheelchair would be difficult, but actually it went pretty smoothly. I got some good feedback about my performance, which was a nice confidence boost with finals looming.

The downside was that I was working 8 hour days 4 days a week. I was therefore either in work, resting or asleep. I did a couple of hours of something else once a week - church or coffee with friends, but in general I was exhausted. Still, I knew that to get through this year would need me to compromise a lot in order for my degree to be finished. When I work, I will work part time and I will have some time and energy - that is what is getting me through.

Anyway! Infection control. I have never found an infection control nurse who could give me any sensible advice for those of us who need walking aids etc. So I've come up with my own.

I've already mentioned my approach to ward infection control as a stick user - my policy was to wash my hands then put a glove over the handle of my stick during a patient interaction, then dispose of the glove and wash my hands after. Plus regular wiping down of the stick handle with surface wipes. Bearing in mind that I clean my pen and stethoscope at the same time, which few doctors/students ever do, it was no bad thing.

As a wheelchair user I've been :
- carrying a small squidgy bottle of alcohol gel with me (because the gel is often at the bottom of the patient's bed or even outside the room and I contaminate my hands if I then move to the patient)
- when I need to move around the patient's bed either foot propelling, dragging myself holding onto the bed or just washing my hands again and wheeling
- gelling my hands again while I'm telling the patient what will happen next rather than as I leave (can't push myself with wet hands
- I'm hoping that on DSA I'll get a spare set of wheels to use at the hospital, which is more hygienic and that I can get push rim covers for them to help with grip as I can't wear gloves on the ward
- first thing, last thing and a couple of times in between I wipe my wheels down with surface wipes - also if there's a chance that body fluids have got on them (e.g. in resus)

I've also been wondering about how splints and tape work with bare below the elbows rules. I know that there are disposable oversleeves available for patient contact for those who need them for religious reasons, but I don't know if that would translate into covering splints. And it would be a bloody faff. Some folk have plastic spints that to a certain extent can be wiped down, but most are fastened with velcro or elastic which can't be. Some folk wear splints in spite of the rules - and in fairness bare below the elbows wasn't an evidence based introduction - it was more common sense than anything else - but I don't know anyone who has had a decent conversation about what is / isnt' acceptable. For example, I imagine one or two silver ring splints would be ok, because those could be cleaning like the plain wedding bands staff are allowed to wear - but more couldn't. Any thoughts folks?

GP Chronicles

May I say again that my new GP rocks?

To those of you with competent GPs this post might seem really boring. It is just a summary of a GP appointment. I have never had a good GP before and I know a lot of folk who are disabled or living with chronic illness do not have a GP who understands how complex, exhausting and paperwork-laden that can be.

Today's appointment (because you are all desperate to know) was about my tummy meds. I've been on metoclopramide to increase my gastric emptying and was helping with the worst of the pain / nausea. Great, except that it was making me twitch/tremor all over the shop. It's been a month and I have a general rule with medications that I stick side effects out for a month if I possibly can to see if they'll die down (obviously, this is not always possible so you have to use common sense - when I tried trazodone ages ago it made me throw up every day for a week, so I stopped it then). For example, the first few days of taking this drug I had an awful taste in my mouth. I'd had it before and knew that within a week it should go, which it did. The twitches didn't and in fact have been getting worse, so lovely GP has taken me off them because of the risk of this being the start of a movement disorder. Metoclopramide is one of few options for gastroparesis/delayed gastric emptying that is now off the table. There was a good chance of this anyway, as a young woman but I'm a bit bummed anyway.

Then we had a discussion (yes, a real discussion where she listened to me and everything) about the relative benefits and risks of domperidone vs prochlorperazine. She went with prochlorperazine because domperidone has risk of similar movement disorders to metoclopramide (although the risk is much less). I pointed out that the endoscopy had confirmed her suspicions of delaye gastric emptying and that domperidone is a prokinetic. She went to make a prescription for domperidone but the computer told her that domperidone + amitriptyline risks prolonged QT (a dodgy heart rhythm that can be very bad) so as amitriptyline is very important for my pain management we decided maybe prochlorperazine would be better. The computer told her that prochlorperazine can increase the effects of amitriptyline and tramadol so she warned me it might make me super sleepy. So she double checked in the BNF to see if there was an alternative, which there wasn't.

She gave me with the prescription with instructions to stop the metoclopramide for a few days to let things settle, to give the prochloperazine a go and see how I get on with it and a warning to come back if my twitches don't resolve when I stop the metoclopramide. She also said that she's not ruling domperidone out, but that we would have to figure out how to use it safely if that becomes necessary.

I left promising to tell my body to behave better for next time and she laughed.

----

Does this all sound normal to you? If you'd told me a year ago I could leave a GP appointment not wanting to cry I wouldn't have believed you. To have a GP who smiles when she sees me, takes me seriously, asks my opinion and listens to it, has a good idea of my knowledge base (so didn't need to explain long QT but did tell me the more common name for prochlorperazine, stemetil) warns me about medication side effects, tells me to come back if I need to and laughs with me is nothing short of incredible. Since I changed GPs I have had 3 consultant referrals, support for DLA, blue badge and DSA applications and have made some actual progress in managing all the bendiness. I feel very, very lucky.

Breakthrough

Again, catharsis and too-early morning ramblings. Feel free to skip.

Dear GP,

It's 5.25 am. I got up to take painkillers at 5. Pain woke me up at 3.30. I'd been counting down the minutes to my last dose at midnight so I wasn't expecting to get much sleep. I held off taking the dose this morning until I had to, because a dose this early means I have to skip one of my normal daily doses and I have my theory test later on.

This is what I mean when I say my pain meds aren't adequate. I'm not looking for all of my pain to go away and I know I need to find balance between pain management and being able to function in a non-zombie fashion. I resent it when you tell me to try non-pharmacological options because that silences and devalues all of the work I have done over the years to manage my own pain non-pharmacologically. All of the work I continue to put in.

Most of the time I don't know what's breakthrough pain and what's just unmanaged chronic pain. The tramadol/paracetamol/amitriptyline keep it manageable on the good days. Most days it doesn't touch it. In your opiates are sedating 'splaining you forget just how bloody distracting and soul sucking pain is. I know you find it hard to believe because the one time you took a 30/500 cocodamol you got really drowsy, but there it is. I can't concentrate when every joint in my body is screaming.

It's 5.30 am. The left side of my body is in spasm from the sacroiliac down. I have nothing to ease the spasm, despite asking, nothing to add in to my normal meds to ease the pain of four major joints all forced into partial dislocation by angry, knotty muscles.

When you don't treat my pain, you make me feel like a liar, you make me feel like you don't care, you make me feel like someone who isn't worth taking the time to treat and then by extension you make me feel like someone who deserves to be in pain.

I don't know how I let you inside my head enough that you are able to make me feel like I'm someone who deserves to be in pain that doesn't really exist. You make me doubt my own senses.

Do you know how many times after our appointments I've had to stop taking all my medications, to get the full burning picture of pain back just to prove to myself that I wasn't making it up?

The thing that scares and confuses me most is that if you were sitting here in front of me I wouldn't be able to tell you this. I would ask for something for the breakthrough pain, you would refuse (I'm on plenty of opiates for someone of 24 you would say, you don't want me to be really sleepy and zombied tomorrow, I need to learn to cope with pain and not be reliant on painkillers, I'm lucky really because I don't have rhumatoid arthritis and have I given any more thought to taking that herbal remedy that's an unproven treatment for a disease I don't have?) and I would cry. I would beg. You would tell me that I really should stop taking the tramadol regularly, because you're obviously building up tolerance so of course it won't help.

Beanie would try to fight my corner for me, but because she's a medical student, she's obviously doing it to be a know-it-all, not because she's the one who holds me and strokes my hair, sings to me, distracts me, loves me when the pain is unbearable.

And anyway, because this is the truly relevant question, how's my mood? I say that it's fine, that I'm not in pain because of depression, that I was very depressed for a very long time but I'm not anymore. You will tell me, with no apparent understanding of the irony, that chronic pain can cause depression, y'know. I will not shout you're telling me my pain is all in my head but that the pain is causing the pain to all be in my head, while refusing to treat the pain or the serious psychological pathology that you are claiming is the thing causing my life to fall apart?

Nor will I shout when I *was* depressed you treated me like I was making it up, like I wasn't worth wasting time on and therefore like I deserved to be depressed. Sound familiar?

Nope. Once again I would just get the message that I am a liar who deserves to be in pain.

That is too messed up. What's the point of practising assertiveness when that's not even the problem? When it's just that I'm dealing with "health" professionals who make me feel like I'm not worth self-advocating for? How did this situation end up in such an awful mess?

I'm so scared that this experience is going to poison every GP relationship I ever have. Logically I know that there are good doctors out there. I know some of them. But pretty much every doctor-patient relationship I've had has been so screwed up that I can't trust that it will ever be better. I'm so worried that the new GP will see my old notes, with lacklustre descriptions of a young woman with a mental health history, chronic fatigue and chronic pain, and just draw the same conclusions as you have obviously drawn about me.

You know what I should say? I am worth fighting for. I will not let you devalue my experiences and my work in caring for my own body. I will not let you devalue the experiences and caring work of Beanie and other family and friends. I will not let you make me doubt myself or my body anymore.


Flo

In which I terrify a (relatively) junior doctor

Where was I? Oh yes, that's right, GP appointment on Friday.

I know that you all find the ins and outs of my healthcare endlessly fascinating - this is mainly for catharsis and memory prompting, so feel free to skip it.

Twas a doctor I'd not met before - either a locum or a trainee, who seemed very young. I would place her at GPST1 (3rd year out of med school), although I wouldn't have been surprised if she was even an FY2. Anyway, she was young.

My two aims for the appointment were to :
- give some excerpts from my DLA form (walking, falling, cooking, washing and 'day in the life') and ask someone to write a report to submit as evidence
- get my meds put on repeat (besides my inhalers, thyroxine is all that's on my repeats list and I haven't taken that in 5 years or so)*

Neither of these is something I would have chosen to take to a GP I've never met before, but the way that the surgery is set up now it's almost impossible to get an appoitnment, let alone an appointment with someone you've met before. Not that I really want to see the regular one anyway. Yes this is one of the ever increasing list of reasons that I am on the market for a new GP.

So, I told her that I was applying for DLA and that I'd brought some information about my day-to-day for whoever would fill in the form to use alongside my notes. She said she would give it to the doctor I normally see, I said that that seemed sensible and went to move on to point number 2.

She then said "so why are you applying for DLA?". I was a bit confused, so kind of stuttered "err...mobility, care...err" *gestures to the wheelchair*. Then said that I have HMS, caused by EDS - not a flicker of recognition. Great.

And no go on the repeats. They don't want to put tramadol on repeat because they like to keep an eye on folk on strong painkillers. I said this would be fine if anyone had ever 'kept an eye' on me, and if every doctor I had seen over the last year hadn't tried to stop it. Which is what happens when you have pain meds on acute prescriptions.

Then I said that I'm leaving anyway, because I'm sick of being treated like crap, not having my pain managed and seeing a different doctor every time I go.

For some reason she took this as a prompt to try and be the one to 'keep an eye' on my pain management. This involved at various points :

- "have you considered homeopathy?" (Want to guess what Beanie's response was?)
- "I don't think a pain management referral would help because they'll only be able to try stronger painkillers - tramadol's related to morphine you know"
- "we need to keep an eye on it because opiates are addictive"

Interspersed with me saying "there's no point anyway, I'm registering with a new GP when I have the report to go in with my DLA form" and her ignoring that and continuing to say things that showed her faiure to grasp :

1) basic principles of pain management and pharmacology
2) that someone who is only 24 / has a condition she'd never heard of could be in enough pain that the idea of 'something stronger than tramadol' wasn't completely ludicrous
3) that given the choice between being prescribed tramadol and not having the pain to start with, my decision would be fairly obvious
4) that I am a medical student (and therefore hadn't even glanced at my notes - it's clearly marked on there after I got frustrated with the last person to talk to me like I knew nothing about anything**)

And then just tucked in there at the very end as an afterthought :
- "What is it that hurts?"

*sigh*

I really want access to teach some of this stuff to medical students. Y'know - basic pain management, expert patients, chronic disease managment (not just acute management of patient's with chronic diseases, or tick box exercises that monitor only common things - depression / diabetes / hypertension etc). That added to my dream curriculum of disability awareness and how the social model of disability, medical model and biopsychosocial framework all have a place in healthcare. Not to mention some proper diversity and equality training - covering relationships with colleagues (the whole team - cleaners, managers, nurses, everyone) as well as patients. Oh, and some idea of how to navigate the healthcare system as a medic-patient. Especially parts of the system that remain clothed in a stigma that medical schools are making no real effort to disperse. Telling medical students who have mental health problems that they shouldn't feel ashamed is not a solution. Removing the institutional prejudice against them is.

Well. It was nice to get that off my head. (For the life of me I can't work out what's wrong with that last sentence... oh well)


* It gets irritating to order the 18 pills I take a day, plus liquid medicine and cream, every month especially because they always manage to forget to prescribe a least one thing. Not to mention the 3 meds I continue to buy OTC because they refuse to prescribe them (have discussed all with pharmacist who has said they're alright to use as I am).

** Admittedly taking the 'I'm a medical student' shortcut is taking a privileged wiggle out of doing some expert patient / patients have a right to make informed decisions about their own health - so you should make sure they actually understand rather than fobbing them/us off with lacklustre 'jargon free' nonsense non-explanations like 'young women your age do faint a lot' - based advocacy. I wish I always had those spoons.

GP saga, installment the 5001st

Things seem a little less bleak. The to-do list remains long and complicated, but it doesn't feel impossible. So, 3 weeks of respite before the despair hits again.
I've made tremendous progress on the new GP front. Almost as much progress as I can have made without actually having a new GP.

My friend who lives near me and has the same condition likes her GP. I am in catchment for that GP and it was on my shortlist of GPs because 1) they have a website 2) you can order repeat scripts online 3) their 'about us' section is very cute, and they say lovely things about being a training practice and having med students 4) their website has access information for the practice, which most don't 5) it's one of the closest to where I live 6) there's ok parking

Unfortunately there's a but.

I phoned the surgery today to confirm what it says on the website, which is that if you're already registered with another GP in the local area, you have to meet with one of the partners to explain why you want to move, and they decide whether or not to take you on.

I'm hoping that explaining that being a patient with a chronic health condition who is essentially registered with a drop-in clinic which can't offer any continuity of care will be enough to convince them. The fact that even when I'm able to drive I won't be able to access that surgery independently (it's at the top of a pedestrianised hill) would be another good reason.

I don't want to push the fact that my quality of care has been so poor, because I know that it sometimes causes GPs to 'close ranks' a bit. If I have to I will though.

I suppose I also have the fact that I can't register at the very closest GP to my house because both the partners there once shouted at me in front of a waiting room for of people for poitely insisting that they refer a friend in crisis to the appropriate mental health services. The fact that said friend was soon after admitted for several weeks maybe proves that I wasn't being quite as unreasonable in my request as they made out.

Basically, I very much hope that this is good news. Fingers crossed =]

Meandering life rant

I don't really have anything to add to my previous post. There are still some things that are good and lovely, and some things that are bad and scary. Having said that, this post has somehow got very long.

I am feeling very overwhelmed.

I currently have no specific support*. Essentially no GP (still registered, but guy I used to see - who made me feel rubbish anyway - doesn't seem to work there anymore, and the whole practice is almost entirely run via drop-in clinic now - no kind of continuity), no physio/hydrotherapy/OT/orthotics, no input from social work, no input from the med school or uni disability services, no DLA, no consultants.

There are steps I can and will and have taken to get this support put in place, but I am finding it *very* spoon draining. Especially because everything requires a huge fight, and noone useful (read GP and physio) particularly believes that there's anything wrong with me. It means that every time I start making moves towards something I get more and more hurt and anxious about trying anymore. And I'm panicked about not getting this bloody DLA sorted out now before the government cocks the whole system up more.

It's complicated by the fact that Beanie has no support as my carer, and is up to her eyeballs in finals stuff, so doesn't have time to do everything. When washing-up time clashes with shower time and showering hurts and makes me feel like death, I'd rather she did the washing-up. Except that going 10 days without a shower makes me feel even less like leaving the house than the horrible pain that getting down the stairs causes. And then I don't see anyone for days. And then I feel isolated. And overwhelmed.

And instead of picking up the phone and calling round practice managers to ask if one of the GPs would phone me so that I can get an idea of whether they're yet another useless, patronising, dangerous ****, I do one of the other 900 things that there are to do when you're planning a wedding and campaigning and learning to drive and organising an event and trying to stop the flat falling apart while the mrs has her finals.

And then someone tells me that I should 'just sort my DLA out' or 'just get a new GP', and I try and put into words what it feels like when life sorta falls apart around your ears for at least the third time when you're only 24 and yet again noone who could actually help believes there's anything wrong - and, in fact, the more you try and persuade them there is, the less they believe you - and I just can't find the words.

My grand plan, for those who will insist on wanting to know that I am 'just' going to do 'something' anyway, is that I have an appointment next Friday with a GP I have never met before who I guess is locum-ing at the practice. It was the only appointment that I've been able to get, having been trying since Christmas. I will take her the main bits of my DLA form - walking, cooking, falls, washing bla bla - and ask her to write me a report using my records. Contrary to what the Mail believes, I can't submit a form without evidence.

Then I will find a new GP. And lucky them.

"Hi, I am essentially housebound and until I get some support I can't get back to uni/work. I am entirely dependent on my partner to wash / eat / get out of bed / leave the house and for my saftey around the flat and overnight. From next year she will start work as a junior doctor, so will be made of nothing but free time to help me. I have chronic, worsening, unmanaged pain. I have uninvestigated, undiagnosed and unmanaged neuro and gastro problems."

People tell me that actually, a good GP will take that all in stride and have compassion left over to extend to asking how Beanie's getting on.

And I've got something to add, after all the years of being told that I'm lazy, that I'm looking for easy answers / fixes and that I can't come crying to the doctor for every little thing. I'm sick of doctors who tell me that I'm letting this condition take over my life when that is exactly what I am trying not to let happen.

Maybe I should tell the new GP this :

I have done a lot of research about my condition, and I do what I can to manage my own symptoms. I eat 10-20g of salt a day and drink 3-4 litres of water. I wear a heart rate monitor and use that to help to gauge when I need to rest so I don't collapse. I'm currently on a dairy free, gluten free diet. I do my physio exercises (adapted so that they aren't as damaging as the actual exercises I was told to do) and I am gradually trying to build up my capacity for aerobic exercise. I take my medication every day, and have learned to manage the side effects. I use drug-free pain management techniques - wheat bags, relaxation, massage and good old fashioned teeth-gritting. When I come to you for help it is because a symptom has got to the point that I cannot manage it on my own anymore, so I need a new med or referral.

Feel like I should put out an advert : Patient with interesting body seeks curious doctor. Can provide own stethoscope. Those who don't believe in opiates for 20 somethings need not apply. Also hold the application if you've ever used the phrase "but your body *can't* be doing that". Please submit 500 words on the nature of the doctor-medicpatient relationship, with a focus on the role of the expert patient and equal access to information in an internet age.

If you've made it this far, you're either concerned or bored. I doubt this epic has satisfied either condition. Sorry 'bout that.

*as a pose to support from lovely mrs, friends etc

Differential

I was talking to the lovely Bendy Girl on twitter earlier about the number of diagnoses I fielded before finally discovering that my childhood (and adulthood) flexibendyparty tricks had everything to do with the joint pain, fainting, fatigue, nausea, IBS, panic attacks etc that I had taken to the doctor at one time or the other.

It's quite common for bendy folk to have a whole ream of diagnostic 'horses' tried on for size before anyone suggests the 'zebra' that sticks.*

Our conversation got me to thinking of all the different things I've been diagnosed with or tested for over the years.

- depression (my main pre-bendy diagnosis at the grand old age of 13 - in retrospect a lot to do with fatigue and overworking combined with a good helping of fuckedupchildhood - I don't doubt that I was depressed at various points but I think that it was secondary to chronic pain and fatigue which I didn't understand or know how to express)

- hypothyroidism (my psychiatrist was so convinced that my depression/fatigue had a physical basis that when my thyroid levels came back normal I was sent for a thyroid stimlation test, and put on thyroxine for several years under the care of an endocrinologist)

- anaemia (again, psychiatrist was convinced there was a physical cause - I wish she had trusted hereself more)

- SAD (my mother was convinced that it was lack of sunlight causing depression - in retrospect probably a combination of weather-worsened bendy problems and the most stressful/busy period of the year for me school wise)

- BPD (I was a young woman who self-harmed, go figure.)

- CFS/ME (I had fatigue and I wasn't anaemic)

- bulimia (gastric stasis plus mental health issues, apparently quite a common issue in adolescent bendies)

- leukaemia (fatigue plus constant, un-fading, unexplainable bruises)

- being overweight (true, but used to explain joint pain, reflux/gastritis and asthma when I'm not hugely overweight)

- B12 deficiency (as above)

- schizoaffective disorder (turns out barely sleeping for several months - as in 2-3 hours per night maximum - will do funny things to your brain)

- swooning (not in so many words, but my GP's explanation for my up to 10 times a day fainting is that 'young women faint')

- rheumatoid arthritis (young woman with severe joint pain)

- fibromyalgia (the rheumy I saw thought that my fatigue and pain must be a sign of fibro, despite diagnosing me as bendy, showing just how little she knows about EDS)

- vaso-vagal syncope (this diagnosis is still standing - it's pretty much Latin for 'you faint', and as such is a prime example of doctors putting the presenting complaint into poshmedicwords and offering that as an explanation)

- somatisation disorder (posh medic for "it's all in your head" - not to be confused with "you're making it up", the idea being that it's a physical expression of mental distress - often confused with "you're making it up" and therefore frequent accusations of this are made with no referral to psychiatric services for treatment of what is an actual disorder)

- Factitious disorder ("you're making it up" not to be confused with somatisation disorder - I apparently get my kicks out of hanging out in NHS waiting rooms, taking 20 pills a day, being too ill to carry on with uni, needing my partner to shower me - well, ok, that one's not all bad - drinking pints of salt water, using a wheelchair, losing consciouness in public, slurring my words and seeming drunk, subluxating and dislocating my own joints, etc.

As each differential was disproven, I was more and more treated like I was faking, and less and less like a human being. Noone referred me for psychological help to deal with a serious somatisation or factitious disorder. Even though I have a diagnosis now, as my GP knows so little about EDS, I go through the same shit every time I need to discuss a new symptom - I have a genetic disorder that affects pretty much every system in my body, but my GP can only just get his head around the fact that it affects my joints.

Maybe it will help you to understand if I tell you that I put off going to the GP for months when I had the awful bruises that led him to seriously consider that I had leukaemia (bruising as it turns out is just another EDS quirk), because I felt so awfult that I could well believe that I was dying. That looks awfully melodramatic written down, but it is what it is.

Every failed test (yes, what should have been good news, felt like a failure) was just more evidence to myself that I was making this up, that everyone gets tired, everyone gets sore, and it was only me who was too lazy lazylazylazy to get to the end of the day without crying. When everyone tells you that you are lying when you tell them you don't feel well, that there's nothing wrong with you, that you're lazy if you get the bus into uni instead of walking, you take that message into the core of you.

You know that I didn't realise that I'd had joint pain for years until I went to my friend's house one day and the air was thick with weed, and the pain went away? I had been told there was nothing wrong with me so often that I couldn't even work out what pain felt like.

Finally realising that not everyone felt this way every day, finally finding out about EDS and talking to people who'd had the same experiences as me, that was life-changing. I could finally listen to my body and believe what it was telling me. If I'd been diagnosed at 13 when I first started to be significantly disabled by EDS, things would be very different for me now.

I understand that the collection of symptoms - pain, fatigue, IBS, headaches, fainting - could all be explained by depression. I understand that they are all associated with "heart sink" "worried well" patients. I understand that doctors don't get it right all the time. But when you are told for years that you are lying, how are you supposed to trust yourself? I don't know if I'll ever not feel like I've been let-down by these doctors and the system they work in.

When you work through a differential, first you check for the fatal things, and then the common things. If you don't find either, you don't just stop looking. You start looking for the stuff that's less common. I want to tattoo on the arm of every medical student and doctor "sometimes it's zebras".


*as the old medical adage goes : when you hear hoofbeats, think horses not zebras.

On spirals and balancing acts

One of the main reasons that I took this year out is because my health and mobility have got gradually worse over the last few years, to the point of decompensation - where the last small changes have made a huge, huge difference. I can see quite clearly now that I was at the point where poor health making my studies much harder and more energy/time consuming, were taking away any time/energy to make any positive changes, spiralling downwards in ever decreasing circles.

I have already noticed the benefits to my health of having been able to step out of this spiral. Through having my sleep out for the first week, I now have a fairly decent idea of how much sleep I currently need. I've also started to learn how to pace my activities - to try and level out how much I'm doing each day to avoid energy peaks and troughs - and started to keep a note of what I'm doing and how my energy is as the start of working out my baseline.

The most dramatic change has been in my autonomic symptoms (nausea, dizziness, fainting, temperature dysregulation etc), partly because I'm no longer exhausted, but also because I've had time to focus on increasing salt and fluid intake (it's not as simple as it sounds), on eating small meals more frequently (big meals make all the blood go to my tummy, which means there's not enough for my brainbox), on having proper rest time in the afternoon when I would normally feel worst.

I am relishing the time to get to know this new body of mine, with its new strengths and new weaknesses. I am learning to listen to my body. It is not easy, and I am so far from done (will I ever be done?). There are some things that will get better with some time and love and attention, and some things that I need to learn to live with.

But this, in some ways, was always going to be the easy bit - juggling meds, learning exercises, knowing when to rest, finding techniques to minimise symptoms. The difficulty comes next year when I have to start factoring medicine back into the equation again.

That is why my sole aim for this year was not to sort my own health out. It will all be wasted if the med school will not live up to their responsibility to make reasonable adjustments for me. If the don't, then once again everything will spiral down.

They don't seem to understand that not only do I have less energy than other folk to start with, but that I also have to expend a lot of time/energy to keep myself healthy - doing physio, going to doctors appointments - AND that everyday tasks take more energy than they take other folk.

The best example is that when I asked to be placed at one of the 3 hospitals within 15 minutes of my house, they said that I could use the hour long journey to placement to rest. They fail to see that travelling is very energy intensive for me, so it's not just that I lose 2 hours of a day that already effectively has less hours in it but that I then lose more potentially useful time because I am too tired to use it.

Things will be easier when my general health is a bit better in various ways, when I can drive so that it will be less energy draining to get around, and when I am more used to being in this body and to using the wheelchair. BUT It will not get to the point where I can do med school without adaptations, because being healthy will take a lot of time and energy.

I'm sorry if this is a bit circular. I'm still trying to find a way to explain this to the medical school, and actually to a lot of other people. And to the bit of my brain that thinks that prioritising my health is selfish, even though my logical brain knows full well that I can be no use to anyone if I don't take care of myself - AND that I don't need to justify my worth in terms of a capitalistic model that would have the only important things a person can do being those that can be assigned a monetary value.

If you've made it this far, then I would suggest you follow it up with a much more coherent post from Wheelchair Dance, which spoke so poignantly to me about how hard it is to bear the burden of self love when a disabling society tells us that we are worthless and broken.

Blah blah blah, crunch, crunch, thud. <

GP Bingo

If I made a bingo card to entertain myself at GP appointments it would include the following :

- failed attempt to pronounce Ehlers-Danlos abandoned and replaced with Hypermobility bonus points* if accompanied by mimed quotation marks (oh, believe me, on more than one occassion)

- "23 is very young to be taking such strong opiates" or "if the painkillers are causing side effects, you should just stop taking them"

- referring to my partner using a male pronoun

- telling me that a mobility aid will reduce my mobility

- "a lot of people are hypermobile and don't have any problems"

- use of the word 'just' in the context "you 'just' need to exercise more / take ibuprofen / take paracetamol / lose weight / go swimming / do your physio / try and ignore it"

- "it's normal for girls of your age to faint"

- the first question after giving a detailed description of a symptom, and how it relates to EDS being "how's youre mood?" bonus points if asked by a GP who refused to prescribe medication / refer to psych when I actually was depressed

- "at least it's not RA/a structural problem in your heart/something more serious"

- suggested use of supplement (glucosamine being the particular favourite)

ETA one of my favourites

- "you can't have that, it's really rare"

However, if the GP ever actually examines the relevant system, asks me a question / shows some sign of knowledge about EDS, or is the one to suggest a specialist referral the bingo card becomes invalid. This has yet to happen.


*In my version of bingo there are bonus points. It makes life more exciting.

Sometimes it's zebras

Today my medical school did something right. They do that from time to time. Well, not the med school, a consultant from one of the teaching hospitals, but I've decided it can count in the med school's favour.

This afternoon we had a session on SLE (lupus) and a bit of immunology. Part of the session was led by women from a local support group. It was a very good session - both useful in passing exam terms and useful in being a good doctor terms.

It was especially interesting for me hearing these women discuss their experiences of diagnosis. The average length to diagnosis of lupus in the UK is between 7 and 8 years. One of them summed it up well as "my doctor thinks I'm a hypochondriac - one week my leg hurts, the next I've got a rash".

I can't tell you how good it is to hear someone essentially telling my colleagues that "sometimes hoof beats are actually zebras"*. It is something that I think people need to hear. A lot of med school is pattern recognition (weight loss + polydipsia + polyuria = diabetes) and based on excluding the worst possible diagnosis (as in first you consider if a headache's a bleed, infection etc that could kill you today, then a tumour that would be fatal if untreated, then something that's likely to recur / cause serious problems like cluster headaches or migraine, and so on).

It would be ridiculous if we left med school thinking that every joint pain is caused by Ehlers-Danlos, but it is equally ridiculous to me that most doctors attidue to joint pain is "it's not septic, it's not rheumatoid (both potentially very serious if untreated), it's OK". It's bloody not. "It's not rheumatoid, so that's good", to quote the rheumatologist who diagnosed me illustrates this problem quite well. Yes, I am glad that I don't have rehumatoid, but my condition can also be very disabling and can also cause a wide range of systemic effects. I was stunned that she could say that when I had told her how much I'd been struggling - it made me feel completely invalidated.

I have had telltale signs of EDS since I was born, and it took until age 23 to be diagnosed. I first saw a doctor about fatigue at the age of 13, I had been telling my doctor I'd joint pain for 3 years before I saw rheumatology.

The attitude that "it's not one of the big nasties, so it's OK", that a vague constellation of symptoms indicates hypochondria and that a diagnosis is too rare to apply to the patient in front of you, is understandable (we're taught to think like that) and incredibly frustrating to deal with from a patient's POV.

I am looking forward to reading the Rare Disease UK strategy for dealing with the need of those with rare diseases, when it is completed. I don't mind that my GP didn't know what EDS was. I mind that he dismissed my joint pain because he didn't know what was causing it, and I mind that since my diagnosis he has not done anything to learn about it. To my mind those are two good learning points from my case, and the discussion this afternoon.


*It is often said in medicine that "if you hear hoof beats, think horses not zebras", that a common condition is more likely than an uncommon one

On sex and disability

This one's about sex. If you don't want to read it for whatever reason, then look away now!



I was chatting with a friend yesterday about sex. Now, those of you who know me offline will find nothing unusual in that, being as I talk about sex all the time, but I don't know how many of you know why. I am very open about my sex life, because I have needed others to be open with me in order to navigate my various impairments.

A lot of information that is available about sex and disability is very cis-heteronormative*, and focuses on one specific impairment - which for those like me who don't fall into these neat groupings can get quite frustrating.

I have found some resources very useful - most online, which is normally the case when you're trying to find stuff for 3+ intersecting identities - but it's very hit and miss. There are loads of sites about sex and disability and a lot of them serve to undo the hard work of the few, through cis/heteronormativity, through questioning whether disabled people should be allowed to have sex or preaching involuntary sterilisation, through reducing the issue to the mechanics of overcoming 'wrong' anatomy and physiology.

I have never been asked how my impairment affects my sex life or my relationship. (The fact that I have never been asked how Beanie copes with being my carer, and if she needs any support should also be noted.) Most medics will have seen folk presenting with quite advanced disease or pathology involving their genitals, because they have been too embarrassed to come before. This should never happen.

It is not all the fault of the NHS - when sex education at school is little more than a lecture on puberty and how to use a condom is it any surprise that people have so much shame surrounding sex? There is more to sexual health than avoiding STDs, more to sex than what fits in where, more to sexuality than heternormativity and gender binaries, more to sexuality than sex.

I understand that doctors are embarrassed to ask, and that they don't want to be seen as prying, but I (gently, and sensitively) ask all of my patients with long-term conditions if it affects their relationship and/or sex life, and none have been offended. Obviously it's not a question to ask in the middle of a bustling ward round, and sometimes it is not possible to ensure adequate privacy, but I believe that it is important to try and find time to ask (just as I always ask if patient's have religious beliefs and/or a faith community, and how that has an impact on their experience).

When I consider the biopsychosocial model - a way of considering the holistic effects of a conditon physically, mentally and socially, I add in sexually and spiritually, because although some argue that those fall somewhere under the others, they are not treated as though they are.

The answer to a lack of good sex ed, and consequent embarrassment and shame is not to ignore the issue because it's all a bit awkward (nor is it to be gratuitous and crude - obviously). Giving medical students and doctors some sex-positive sex ed, and outlining the issues that patients may face would be a good start I think.

What are some good resouces you have found about sex and disability?

*Is written from a perspective that cis-gendered hetersexuality is the norm, and therefore that anything else is abnormal (and thus not worth considering / writing about)

On fuckwittery, and paperwork.

This is a really long post, which is in essence two joined together, but I'm too tired/fogged to figure out a more sensible arrangement.

I promised myself that I wouldn't let this blog make this look easier than it is. Every time someone tells me to 'just' apply for DSA or 'just' take a year out to sort stuff out or 'just' apply for less-than-fulltime work, it cuts a little deeper. I promised myself that I wouldn't gloss it into 10 simple tips to deal with being the 'problem' in the system.

The truth is chaps, within the current system, it's bloody difficult. There will be a lot of fuckwittery and a lot of paperwork. You will have to overcome the urge to punch each person who says "but that's 'just' the way we do things (so deal with it)" and can't understand why that's not justification for not changing something. Med school will make you find your physical and mental limits, and struggle like mad to defend those limits. And a lot of the time, when the training programme looks like it's just going to be a shitload more of the same nonsense you will wonder why you couldn't do something else with your life (before you remember that you'd probably just revisit the same issues in a different form).

The only advice that I, or anyone else can truly offer is this : always keep in mind why it is you're doing this (and recognise that this will change over time), and know what you are willing to sacrifice to get there, and what you are not.

Things are really rough at the minute, and I offer the reasons why as an example of 'just' how difficult it can be to play this particular game. This is a pretty bog-standard worry list.

1) My SI joints are out and my back is in spasm. I have considered phoning the GP to ask for some drug-related assistance on that front, but being as he thinks that the tramadol is far more than a 23 year old should be taking, that seemed pointless.

I still haven't found a way to sort things out with my GP, and now whenever I think about trying to talk to him about anything I cry. [now is not the time to suggest that I 'just' switch GPs] Advice from any fellow medics on this score would be appreciated. I fear that most other GPs would present similar problems.

2) Placement is a 40 minute bus journey away, which is tiring and sore. I can't take the current wheelchair on the bus, because it's too heavy for me to push outside, and to lift (rush-hour buses "don't do" ramps), so that means a £10 taxi journey, which I can't afford because I still don't have DSA (because no matter how easy it is once you've actually applied, my very best efforts are not enough to persuade my mother to sign a form and send it to me so I am as yet un-funded for the year, thus have no funding body to claim from). There are several closer hospitals, but I am in the current one for most of the year. In many ways it's better in terms of input, but that's useless if I'm too much of a zombie to take it all in.

3) Job applications. We have decided (almost) not to apply for special circumstances after I spent the best part of 2 days sobbing every time I thought about it. Not because of me, but because of the stupid, agressive questions that Beanie (which is now the mrs's's's pseudonym, bien sur?) would have to answer. (I just opened the form to find an example am now crying again - see the end of the post for these questions)

BUT we're not quite sure of one thing - if special circs can dictate more than ending up in a specific part of the country we might need them, because I'm having serious concerns about slotting into part of a regular rota (I think that 13 hour long days would end with fainty, vommy junior doctor, and that's not really what you want as a patient...). The deadline is coming up soon, and we have no idea what to do / if it's possible for part-time foundation years not on a pro-rata basis. We can't meet with the person who might know until a couple of days before the deadline (and not for want of trying to bring it up earlier...)

4) And in the middle of this, I'm pretty sure that depression has slipped in without me noticing again. Of course, it's hard to tell amidst fatigue and big'n'scary decisions. I am so scared of getting ill in this particular direction again, because services screwed up pretty dramatically last time, and I'm pretty sure that this fear clouds the waters still further.

--

And you know what? I am so keenly aware that I'm one of the privileged ones - I'm one of the ones who made it to medical school in the first place - other disabled people, other folk from less-privileged backgrounds (especially now with the tuition fee hikes), other women in some parts of the world - so many folks don't get to this point of being on the inside and bitching about it. That's the part of this I don't talk about often, but it doesn't mean that I'm not thinking about it. I know that the system's not only broken for me.

I'm so tired of fighting fires distracting me from trying to make the course that I love truly and joyfully accessible. That is one of the reasons that I started this blog, and that I'm exploring the possibility of forming a support and campaign group for disabled students within my med school. I have to leave it that bit easier for the next person.

So, here are some of the questions necessary to answer should Beanie wish to apply for Special Circumstances in FPAS as my carer :


"What happened (or will happen) to the person you care for while you were (or will be) on your elective? Who cared (or will care) for them during this time?"
- answer : So many assumptions in one little question! It assumes that everyone can travel for their elective, it assumes that the care-ee isn't doing their own elective...

"What other services does the person you care for utilise e.g. social services, private carers...primary health care team? Have all local support resources been fully considered?"
- answer : Once again, I am also a medical student. I cannot consider "local support resources" until I know where I'll be living. Secondly, non-professional carers often take on that role because outside help does not fall out of the sky. (Remind me to tell you about trying to access a Social Work assessment during another rant...)

"How do you plan to combine these responsibilities with a full time F1 post, which involves irregular shifts, nights and weekends? (Foundation doctors cannot necessarily guarantee to leave exactly at the end of their shift every day.)"
"What arrangements will you have in place for unexpected or planned periods when you will be unavailable? What will happen, for example, if you have a week of nights, you are unwell, or you go on holiday?"
- answer : We don't know, for several reasons. Firstly we don't know if we'll be living here, in which case there is always someone I can call for help if I really need it. Secondly, we don't know how accessible the housing we will be living in is.

However, the main thrust of the answer is that when Beanie is working odd shifts, unless I manage to get a level of DLA/PIP that means I can pay for some help, I will be severely limited in some activities (those that involve leaving the house), and other things will have to work around her schedule (like showering). I will also be at risk when I'm in the house on my own (for example during the night I often fall down and need help to get back up).

It should be pointed out at this point that medical school is anything but a regular schedule or commitment, so anyone applying for special circs as a carer will already have been dealing with these issues to some extent.

--

If you think that I'm being unreasonable, please note that parents do not get asked any of these questions, or any like them (nor should they). These questions are designed to catch out people who are claiming carer-dom for the convenience of staying put, but surely getting a GP / Social Work to certify that someone is a primary carer would be as effective a way to deal with that (being as if someone was determined to lie their way into this, they could do it anyway...). Although even with that suggestion there are problems, for those who do not have supportive professionals around them to confirm their caring role (this is a big problem when applying for benefits etc).

They also require a copy of a 'care plan'. When will people realise that not all of us who need input from professional services get it? What is the point of Beanie preparing a written care plan, just adding to the work she has to do for me? And plus, the variable nature of my condition would make that bloody difficult anyway.

I'm sure that if I brought these points up with whoever decided on these questions they would say "Oh, we didn't think about the fact that the care-ee could be another medic" or "We need to make sure that people aren't trying to play the system". To me, and others like me, the intent doesn't matter - what matters is that my partner is being made to prove herself yet again to a bunch of strangers, that once again noone has considered our situation as a possibility, that this is just another way to make the application process harder and more complicated for those who don't tick the right boxes.

Dr Internet

Another issue I've seen both sides of over the last year or so is that of patients diagnosing themselves over the internet.

Doctors attitudes towards a patient who's been consulting Dr Internet seem often to be put down to "a little knowledge is a dangerous thing", but - as with anything - as someone who straddles the divide it feels infinitely more complicated.

As a patient, I don't think I would have a diagnosis now if it wasn't for Dr Internet. My condition is genetic, and as such I've always had it, and with the retrospectoscope I can see its stamp on my life from birth. However, it was joint pain that made me start looking for a diagnosis, but more than 2 years after first mentioning this to my GP nothing had happened. It wasn't until an internet friend mentioned her sister's diagnosis that I'd even heard of my condition, but within 5 minutes of googling I was convinced that it was the explanation for my joint pain and a lot else besides.

My GP was not convinced by my research, and it took a further 8 months for a rheumatologist to confirm my suspicions. She diagnosed me, told me there was nothing she could do for me, and discharged me. If it wasn't for the online support group I had found, I wouldn't have known that my condition was genetic or associated with other symptoms than the joint pain. Or really anything else about it. And yet, every time I try to share what I know with any of my doctors, they get really weird. Like I'm trying to undermine them.

I am honest with my GP. If I know something about my condition that he doesn't then I'll say so. Not in an "haha, I'm smarter than you" way, in a "if I don't tell you this it'll be a waste of time for both of us" way. I have consistently tried to get him to read one, simple BMJ article about the management and associated problems of my condition, but to no avail. So I continue to be the one out of the two of us who knows anything about it, and he continues to ignore that fact. My GP is far from being the only doctor who treats me that way.

It's the whole "well if you have all the answers why did you bother to come and see me?" / "I didn't spend years of my life training only to be replaced by a machine" / "if we both have the information what is my role?" thing. And I understand, really, despite my frustration.

We are not trained to deal with this situation. My medical school is fairly progressive, and it has never been mentioned. We are encouraged to respect a patient's experience of their own condition (although in my opinion this isn't talked about enough) but I have only rarely been encouraged to respect a patient's knowledge about their condition. Sometimes when we discuss sharing information with patients, we are taught to first draw out from them what information they already have, but in my experience medics are not good at this part unless we're breaking bad news.

When I am informed it disrupts the role that he has been taught to play as doctor, and it disrupts the role I have been taught to play as patient. There is always going to be an element of this for any medic who is consulting another doctor for treatment, but it is also true for a lot of individuals with longterm health problems - especially those with a rare condition who are used to dealing with doctors for whom they are a "once in career".

But, role disruption is not the only answer, and doctors are not unreasonable for being wary of Dr Internet. I am not naive. I too have seen the patients who come in with a sheaf of printouts about plague or whatever.

The lack of proper media education most of us received at school or thereafter is a really big deal. We are inclined to believe whatever we read, unless we have the resources to read critically. There is a lot of medical information on the internet, and a lot of it is nonsense. But Mr Jones might not know that. Mr Jones is not medical, he has no system for sifting the quite interesting from the potentially dangerous.

For this reason I believe that it is of supreme importance to realise that a lot of patients will have googled their symptoms, and will google the latin name you attach to their symptoms. A very good doctor I worked with suggested to patients "the law of one click" - don't go further than one link away from a reputable website.

Know how to direct your patients to good-quality information on the internet. In my experience, certainly for more rare conditions, this is best provided via condition or symptom specific support organisations, as more generic websites (such as the NHS health A to Z) can be based on outdated or over-simplistic information. However I think the NHS website has some great resources and you should encourage your patients to interact with it =)

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Phew! That was a long one... I thought that tomorrow I might start looking at some news stories about disabled medics - they raise some interesting issues.