Tuesday 6 September 2011

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.


  1. Do they think that carers who aren't doctors don't get unwell and don't go on holiday?

  2. I know... it's so ridiculous - these are not issued limited to the medical profession, and it's just another way to make things harder for someone who already has extra to deal with. Considering the med school has been so spectacularly disinterested in the fact that Beanie is my primary carer, and have offered pretty much nil support, now they're interested? It is discrimination.

    The worst bit for me is them asking about plans, because we literally can't make any until we know where the [grrr] we're going to be living.

  3. I could just tell the truth-

    1) We did OUR ELECTIVES in the same place
    2) Have YOU ever tried to access local support services?
    3) Normally we go on holiday together thanks and sometimes she uses dry shampoo and eats takeaway food. I'm sure she could do that more but it wouldn't be healthy.

    So please let us live together somewhere near our friends/church/support network so we can both cook/eat/shower/make a cup of tea and retain as much sanity as F1 allows.


    There's a massive disconnect between the nice helpful care plan providing NHS of the form and the not very helpful NHS of real life (as both patient and employee)

    Beanie xx

  4. Two points really speak to me here.

    Firstly, that horrible 'just'. People use it as a way of saying "it's not really a problems, is it?". I've done it as well. When hearing it, it's like a magic sign saying that the person speaking doesn't actually understand what you're going through, and probably isn't even trying that hard to do so.

    Secondly, the forms issue. Why is it that any help for people who need it has to be made so hard to get? I'm fairly sure, in most cases, it's so hard that the difficulty is actually keeping out more people who should be getting the help than people who shouldn't. People who really want to scam will always find ways to get around pretty much any hurdle, as you say - and they have the energy and mental clarity to go to those lengths, while we don't.

  5. Oh, one tip. It's not a magic wand, it's not guaranteed to do any good, but it often does more than you'd expect, especially when the people you're dealing with know a bit about the law in this area.

    Use the phrase "reasonable adjustment". Don't use it where it doesn't fit, don't keep repeating it, just make sure to use it where it is appropriate. It's a little signal that all you're asking for is your legal rights.

  6. I had some really good news today.

    I did my undergrad degree (2003-2008) in the same place I'll be starting my Public Health MSc in a few weeks.

    During my undergrad degree, the counselling service was bloody useless. The first time I needed to talk to them, in 2004, I was told I could only see the head of the service, and almost the first thing she told me was 'I've never talked to someone who hears voices before'. Statistically that's improbable, but anyway, they continued being crap, I continued writing angry emails about this, but because there was officially university counselling available to me, I couldn't access other more suitable talking therapies.

    I was told by the disability office that I should talk to the uni counselling service about my recent Section 136. I was not expecting much, and told them so. I was amazed to find that as well as the counselling, they now have a team of actual useful mental health professionals. I was able to talk to an MH OT whose previous job was with the local Early Intervention in Psychosis team, who said useful things like 'I'll find out who in your department you can talk to, because we both know that some people get unreasonably freaked out by voices', didn't ask me 'so how do you _feel_ about that' once, and didn't have dangly earrings and a purple scarf!

    I'd like to think that my years of banging my head on the wall and ranty bloodymindedness helped a bit with this, though I don't know.
    Once upon a time, people like me weren't supposed to stay at uni, we were supposed to go off and be quietly institutionalised, or moulder in a Care in the Community flat, and now they have specialist MH teams to keep people in education & employment.

    I was also the first person ever in my department to go part-time as an undergrad. It took me failing a few modules, having to drop out, rounding up the Head of Department and Disability Office and pretty much locking them in a room and shouting at them that they weren't allowed to 'not offer part-time programmes', and lots of finding out how it could be done, but they did. Since then, other people have been allowed to take bits of the course part-time where they needed to.

    Things are now much, much better for students starting at my uni with a 'severe mental illness' than they were even when I started in 2003. They do change, even if you do have to bang your head on the wall a lot to get there.

  7. Is it possible to get anyone else to help with the form? Uni disability department, friends, church people? Examples from a relevant charity? I know there won't be the medic forms, but you cold probably copy bits of DLA ones?

    I have swapped quite a few benefits forms. I can fill in someone else's DLA forms without too much trouble by now, but ask me to list all the things _I_ have trouble with, and I'm so used to being 'fine' that I can't do it.

    Useful trick. Explain exactly what you need the help for ('cooking a meal'), then the consequences of trying to manage without, in the most catastrophic terms possible ('I would lose concentration, forget what I am doing, or be distracted by voices telling me to use kitchen implements to hurt myself. I leave hobs on hot and pans to boil dry. This has caused small fires, and could cause the cooker to catch fire. I do not cook if I am alone in the house because of this').
    It's crap to do, especially since I know that I _can_ plan & prepare meals for 30 for a weekend by myself, I'm just not going to when I'm not well, but it does work.

  8. Thanks for your input guys, I'll have a proper look at it when I'm more awake xx

  9. It's all going to be ok

    B xxx