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.

Joining the dots

I hate phonecalls. I hate them.

Phoning my mother I can manage (although apparently not often enough), but phoning someone I don't know is like torture. It is one of the more debilitating remnants of my mental health issues.

Oddly enough, making calls on placement isn't an issue if it's work-related (e.g. "hey, I'm a medical student on ward 6 returning a page for Dr Wotsit because he's in surgery right now" = fine), but if it's in relation to myself it's different (e.g. "hey, I'm a medical student starting a placement with Dr Wotsit on Monday and I'm wondering where I should meet him" = horrible).

One of the worst things for me since my mobility and self-care have become more and more limited is that I feel like I'm constantly on the phone - making appointments, phoning ahead to future placements to explain my needs (because as I will no doubt mention again, the system my med school has in place of communicating my needs to placement supervisors is [bad word]), phoning to ask for information on particular services and how I can be referred to them etc.

There is another post to be written about acquired versus congenital (from birth) impairments, and this is not it. I fall someone in between anyhow, because although I have a genetic condition, I was not aware of its effects for a long time. To me, the single worse thing about acquiring an impairment, is that noone tells you what you should do next*.

When the consultant diagnosed me with my condition early this year she discharged me. She provided no information about what I was supposed to do now - nothing about social services, benefits, occupational therapy, university disability services - nothing. She discharged me back to my GP who didn't mention any of them either.

I was lucky, in some ways, because I was aware of these services, now. I had become aware of my eligibility for most of them when I figure out my diagnosis via the internet just over a year ago. Still, awareness of them isn't worth much when the mound of paperwork proffered by some agencies and the refusal to become involved without 'official' diagnosis by others, means that they aren't really an option.

I've been eligible for certain help since long before I started uni because of mental health problems, but I wasn't aware of it. Again, GPs, psychiatrists, therapists, teachers and the medical school all failed to make me aware of the services that were available to me as a disabled person.

I guess they all assumed someone else would mention it. I also believe that a lot of those people didn't consider me disabled until I began to develop physical problems.

I think an overwhelming factor connecting all of these individual failures to signpost (if you will) was ignorance. I don't think that most medical professionals are truly aware of who is eligible for what help, where they can find that help and what hoops they have to jump through to get it. That is a massive problem.

Some days it feels like the system is deliberately opening up cracks for me to fall through. I spend hours sitting on the phone chasing down the next person who might have some answers - but those answers always hide behind more phonecalls, more paperwork and more assessments from people I've never met.

If it was just a little bit easier...

But there's no point even finishing that sentence. It's only going to get harder with cuts and changes and reshuffles.

Please don't think I've forgotten my blessings. I hold them in my head and incant them like a spell. I remember every day that so many others are bearing more of the brunt of this system than me, that others face systems far more rigid and uncaring.

I just can't shake the feeling that it's all about to come crashing down on my head. I think the word is overwhelmed. I spent this afternoon making phonecalls, and I will spend tomorrow doing the same. None of them seem to get me anywhere, but a girl can dream.

How have you dealt with the endless hoop jumping that seems to come with being disabled? Have any organisations helped you to deal with it all? Leave a comment or email disabledmedic[funny at thing]hotmail.co.uk

*This may be less relevant for impariments such as spinal cord injuries which tend to involve some kind of systematic, inpatient rehab - although I imagine still implies to a greater or lesser extent

Hi =)

After an impromptu blogging holiday (probably bad for my blog stats, definitely good for my soul) I'm back. I'm 2.5 weeks into my 4 week holiday - I was thoroughly refreshed by a week long event run by the charity I'm a trustee of (lots of very interesting access chat, which I'll come back to) and now we're getting our teeth into a proper pre-finals clearout. It's immensely cathartic, and we've got rid of a lot. Seriously - about 100 books and several bags of assorted other stuff. De-cluttering is one of my favourite activities. I'm trying, day by day, to live more simply - it's healthy in so many ways.

Anyhow. Sensible stuff tomorrow, I promise - who's for a ten top tips for a proper clearout? You thought I was joking...

So, you have a few days off, the flat is a bit of a state, you've run out of space and a bit of a list of DIY chores has built up. It's time for a bit of a non-spring clean (unless you are reading this in the spring, in which case, nobody likes a show-off.

1) It's easier with a friend (and more pleasant). Ideally, if you're a spend-an-hour-arranging-a-drawer kinda person, your friend will be a get-the-room-looking-tidy (and-shove-the-mess-in-a-cupboard) kinda person. It's far easier for a friend to sort that box under the bed into 4 piles - destined for memory box, keep, throw/recycle, charity shop - and for you to just go through the piles they've made.

2) Be systematic. Before you start, give yourself 15 minutes to wander round the flat / house and make a brief list of what needs done (e.g. : bedroom - quick tidy up, clear out bookshelves, clear out boxes under the bed, switch bookshelf for chest of drawers...). Don't get too caught up in this, and be realistic about what time you have.

3) Be systematic part 2. Go through the list with the highlighter and highlight the big jobs and those you're least looking forward to. It's easy for every 'find a new mirror for the sitting room' to consume tidying time. Start with the biggest / least fun job - it'll feel good when you get it done.

4) Be systematic part 3. That being said, it's immensely satisfying to take one room at a time, because seeing the gleaming tidyness of the sitting room will help prod you through the bathroom cabinet. If taking this approach, tackle the biggest / most put off job in the room first, and then start in the corner furthest from the door and work back towards it.

5) Come back to things. If you're getting too bogged down in a big job (for me it's spending hours making the entire contents of a drawer sit at right angles to each other...) or you can't decide whether you're quite ready to get rid of a certain book, put it down and come back to it. It works for bastardly exam questions, and it works for a clearout, too.

6) Piles are your friend (not the bottom kind). Clearouts get messy pretty quickly. I would recommend starting a bin bag, a paper recycling box, a memory box, a charity shop box and an 'inbox' (things that need action taken on them) before you start. To save energy, tidy things into piles (e.g. needs to go back to the kitchen, supposed to be on bookshelf in the hall) or into these boxes rather than running back and forth with each item.

7) BUT don't leave the piles to grow into mountains by the end of the day. Every time you take a break (we'll get onto that) move the relevant piles wherever they need to go. If that room's already been tidied, put the stuff away. If it's not, put it somewhere you won't trip over when you get round to it. Ditto, don't accumulate thousands of boxes to take to the charity shop, every day or two, take some stuff round, or ask them to come and collect.

8) Be sensible. Tidying is hard work. Take regular breaks, fuel properly and be aware of how you're carrying out each task (are you standing to do something that could be done sitting, attempting to do something that's epic hard for you but easy for your flatmate or lifting from the back and not the knees?).

9) Switch types of job. Switch between physically heavy and less physical tasks (e.g. hoovering and sitting down to sort out stuff in the boxes under the bed, assembling flatpack, folding clothes). You don't have to finish each job before switching to the next - I often run two tasks in parallel, switching every few minutes.

10) Be nice to yourself =) Many things fall under this point, including what's above, but most importantly - don't beat yourself up if you don't get everything done that you wanted - any amount of clearout is great, and you can carry on little by little at weekends or evenings. In that spirit, reward yourself at the end of the day - a lie down with a wheat bag, a Cointreau-spiked hot chocolate or a nice bath (or all all three!).

Does anyone else enjoy clearing out, or am I strange in that regard?

The "Joys" of Packing

I used to quite enjoy packing. I like making lists, I like ticking things off lists. I especially like ticking things off the list as I repack to come home, because noone else does, so it makes me feel smug.

I have always packed light. My mother left me to pack for myself for my first Brownie pack-holiday with only these words for advice "only pack things that you will use". Wise words indeed. For some reason, my obsessive adherence to this rule has led to a genuine anxiety about being the person on any given trip with the biggest bag. Psychoanalyse that...

Think through the day step-by-step - gather toiletries, a few Tshirts, one book for every 2 days, enough pairs of knickers for until you get home / get to use a washing machine. If camping, grab waterproofs and a sleeping bag, and that's you pretty much done. My second packing rule is "make sure you have the essentials - those necessary to get you where you're going (passport etc) and those necessary to keep you alive while you're there (meds) - anything else you can buy when you get there (subclause : and you can always wash your knickers in the sink if you run out)".

My third rule emerged during my DofE expedition when, for some bizarre reason, I ended up carrying the tent, the stove and, after a while, someone else's bag : "only pack what you can carry and pack smart so that the load is balanced".

My ability to pack was greatly enhanced by my time at boarding school. My house mistress taught me that "rolling is better than folding", and indeed, I am now excellent at stowing socks in impossibly small spaces.

These four pieces of wisdom stand me in good stead now. My carrying is not so good anymore. A modest sized hiking rucksack with a couple of books topped up with clothes is about my limit on a good day. On a bad day I have been known to try and exercise my Matilda-esque mind control techniques to move a heavy bag along a station platform.

The problem that I had while travelling back from my elective yesterday was that I left significantly more disabled than I arrived. On the way I could manage to carry the cat in her box for short periods, along with my rucksack, on the way back I really shouldn't have carried anything. I'm paying for it today.

So, here I am, repacking. It's a slightly different process these days. I feel less secure in my ability to pack only what I need. I'm anxious about my ability to carry anything, and anxious about leaving something behind that I need for comfort. It's less about squashing stuff in, and more about streamlining. On the way to my elective 1/3 of my rucksack was full of meds. I need to take cushions, splints, the stick of wonder, wheat bag and hot water bottle (they both help with different kinds of hurting) blah blah etc blah.

Tomorrow I will employ the technique perfected yesterday - cat in a box on a wheelchair that this wobbly bod will use as a walking frame. And we're only taking one bag between us so my rib will take less of a pounding.

Now, if you'll excuse me, three skirts are flirting with my attention and only one will make the cut... decisions!

Seph : Special Circumstances and FPAS

[Several years on from this post and I have successfully applied for Special Circumstances to stay where I trained. For more up to date information please see www.foundationprogramme.nhs.uk]

Some more on the Foundation Programme! Don't ever say that we're not thorough... Here is another guest post by Seph which looks a little more closely at applying for special circumstances within the application process (specifically, reasons you need to stay in your 'home' - read medical school - deanery to work). Thanks Seph =)

In order to tie in with Flo's series on FPAS, I want to write a little bit about special circumstances. This is a process by which you can try to demonstrate that you have a particular need to have a job in a particular foundation school (and deanery). If you are successful, you are allocated to that school ahead of the general allocation process.

I should mention at this point that I did not get special circumstances, because I didn't apply in time, because I assumed I didn't qualify. I was then advised to apply on the basis that I would be more mentally stable if I didn't have to move across the country. Which I would have been. So: make no assumptions! If you think you might benefit from it and you can think of some justification, apply. At the least, email your med school's pastoral support person (particularly if they know you) and ask them what they think.

So, to qualify for special circumstances you need to a) have children, b) be a carer, c) have a medical condition (physical or psychological) or disability for which local follow up is an absolute requirement. There are also educational special circumstances which we will discuss in a minute.

Obviously point c is the more relevant here, and the one under which I tried to apply. Note that their idea of an absolute requirement varies – it may be that your area has a better speciality service than others, it may be that you are used to a psychiatrist or a therapist and would not benefit from being transferred, it may be that you have a surgeon who is taking an interest in your care. It doesn't matter what the reason is as long as you can justify it and get either an OH doctor, a specialist or (at a pinch) your GP to back you up. They have to write a report explaining about your condition, your ongoing treatment and follow up and – importantly – why said treatment has to be local. If you are going to apply, therefore, you need to discuss this with your chosen doctor well in advance and get them to write the letter well in advance so you've got it to hand in. Get your ducks in a row, as soon as you can. If you can get more than one letter backing you up, so much the better, and do it now. It is also worth noting that you can only do this is if you're applying to remain in your current deanery. You can't claim that you need local follow up somewhere else in the country.

Educational special circumstances is a slightly different deal. If you have special educational needs, your medical school will discuss with you what would be the best environment in which to carry out your foundation training. I should point out that the wording of this part suggests that this also includes an assessment as to whether you can “adapt to the working environment”. Make of that what you will. Anyway, your medical school can then put you forward for pre allocation to a particular foundation school.

Applying for special circumstances requires just a short form and the backup stuff. The form and the relevant guidance can be found on the Foundation Programme website at http://www.foundationprogramme.nhs.uk/pages/home/keydocs. The guidance document is pretty good, written in reasonably plain language and fairly straightforward. As these things go.

Special circs is not a certainty. Your application will be reviewed by a local and a national panel and your score still needs to meet the “national allocation criteria”, whatever that is. It won't guarantee you a job, either. You also can't link applications if you apply this way. However, it doesn't hurt (unless you're planning to link) and you might be eligible even if you don't strictly meet the above criteria. As I said above, if you can think of something that would medically justify your need to remain in your own deanery, give it a go.

Good luck!

Do you have experience of applying for special circumstances for the foundation programme? Would you like to write a guest post about any aspect of disability/chronic illness and medicine? Leave a comment or email disabledmedic[funny at thing]hotmail[dot]co[dot]uk

A and E : Compare and Contrast

This is a slightly different style of post. I know that for friends it will be a reminder of a difficult time, and that medics may find themselves acutely aware of the other side of these events. This is my perspective on two A and E visits, one a few years ago and the other a few days ago. This post may be triggering or difficult - please feel free to skip it, or come back later.

I walk into A & E. The waiting room is dark and intimidating. There are several loud, drunk men and I am frightened. Sophie goes to talk to the receptionist because I am too far away to find the words. She barks at her to speak up, and I am dimly aware of the room falling silent when Sophie says that I'm suicidal and not safe at home. Sophie asks if there is somewhere quiet where I can wait, and she is told that I can stay in the waiting room "like everyone else". We sit, and wait for over an hour.

This time I am going alone to a department that I've never been to before. I've been putting it off, because of all the times before, but the pain is too much. The receptionist asks lots of questions, and won't bring me a chair while we talk even though I ask her, I can't lift one myself. Again, my name, address, DOB and telephone number have to be shouted through a screen in a room full of strangers. I sit and wait for 15 minutes.

The triage nurse calls me through and tells Sophie she must wait outside. I freeze. I can't talk, I need my friend to be my voice. Sophie insists, and is eventually allowed in. I'm pretty sure the nurse assumes we've both been drinking. We haven't.

The triage nurse calls me in and smiles at me. When I tell her my diagnosis she writes it down and asks me to explain it to her. She tells me what will happen next. I am called up twice more - for ECG and chest Xray. Getting up and down is painful as is undressing. Both technicians are lovely, and help me to change into the best designed hospital gown I've seen. I return to the waiting room and wait another hour.

The triage nurse is aggressive, and brisk. I am under the "care" of crisis team, I should have called them. Sophie explains that after 2 hours of trying to get through, their advice was to do some washing up. Still, it is not her problem to deal with - "we're not going to admit you, we're not going to give you anything, you could wait to see the medic on call, but they're busy treating people who are actually sick". Apparently if I was really suicidal I wouldn't be seeking help. I can't find the words to tell her that depression this deep feels like and end-stage illness. Death hangs over my head, and I have no control. I'm frightened.

The doctor calls me in and takes a brief history. He knows about my condition, and agrees with my interpretation of the symptoms. He listens to my lungs, and tells me the rib is dislocating with every breath.

Before I know it, the nurse has pulled me to my feet, propelled me back to the waiting room and told me that "if I choose to stay" I'm in for a long night. I want to leave, and when Sophie doesn't try to stop me, I know it must have been as bad as it seemed. I feel small and helpless, and incredibly guilty for "wasting time" and upsetting Sophie. She stays at mine. My friends don't leave me alone for the next 2 weeks as service after service failed me. I am lucky to have friends like these - 20 year olds doing what the grown-ups can't seem to manage.

I get shown my Xray, and talked through the findings. They check my pain meds and I am given lidocaine patches, and told to come back if they don't work.

I have been on both sides of A and E. I know that people get frustrated, and I know it is difficult to feel helpless because you can't "fix" people. I also know that people feel frustrated by the thought of wasting time spent helping "sick people" on people who have "done something to themselves". If only life was that simple.

The difference was in the small things - being smiled at, being believed, receiving treatment. Not being told that as a medical student I should know better than to break a rib...

And if you think that feeling suicidal doesn't count as an accident or emergency, you might want the NHS online symptom checker to change their advice. Because according to them I should have phoned 999. Think how well that would have gone down.

Please also look at my friend Ali's blog here at her posts about A and E, especially this one called 'Getting it Right'

You are welcome to leave your comments, no matter your opinion. I would ask that you bear in mind both that this post leaves me feeling pretty vulnerable, and that I have other readers who have also had similar experiences.

I'm sorry that yesterday's post hasn't materialised. I'm tired, in a lot of pain, and trying not to think about the logistics of getting home.