Lots of (Good) News

I thought we could do with a little positivity after my previous overwhelmed and gloomy post. In bullet point form :

- My communication cards arrived. I haven't had to use them yet (typically).
- I got my discretionary blue badge.
- To celebrate I got a pretty holder for my blue badge which arrived super quickly in the company of the radar key* I'd never quite got round to ordering before.
- The next day my DLA letter arrived - I got high rate mobility and mid rate care as I hoped. I was expecting to have to go all the way to tribunal so that was a welcome surprise. The awards are indefinite, which for me will probably mean until I'm assessed to transfer to PIP at which point anything could happen.
- This means that I can apply for a motability car. I can't tell you how much of a relief that is. My driving test is coming up pretty soon so I'm hoping that this run of positivity will extend that far!
- The payments get backdated to when I got the form in February which means that I can afford a couple of impairment related things (such as an exercise bike to maintain muscle tone in my legs) that I couldn't afford before.
- I had a cardiology appointment yesterday. This would not normally be good news. I asked him about my diagnosis and we had quite a useful conversation, the upshot of which was that I have autonomic dysfunction (quelle surprise) which 'seems to be more the POTS than the bradys and the vasovagal' (and I quote). He is king of vague and his English is not great, but in short I have (the) POTS. As with every diagnosis it's bittersweet - yay I know what the incurable chronic illness I have is called. Tis a step in the right direction anyhow.
- And best of all, my civil partnership is one week tomorrow and the blessing is two days after that. Exciting!

I feel a little guilty because I know that a lot of you are not having a good time of it right now, but equally I know that noone recognises the importance of enjoying the good times like folk who have more bad days than most. So for now I'm enjoying good fortune, keeping out of the heat (DLA backpay meant that I could buy a decent fan to stop me collapsing several times a day every time the temperature goes over 20 degrees) and resting up before the big day(s) (long weekend really).


*Radar keys unlock disabled toilets signed up to the radar scheme (in a lot of public places like stations and shops the toilets are locked to stop people trashing the place etc. This is good because I'll stop having to go round the houses to find the person who knows where the key is, but I don't like the system at all. Well, rather, I don't like that it has to exist, as in I don't like that disabled toilets are locked. But that's another post.

Lots of firsts =]

Today I have done the following things for the first time :

- booked my practical driving test
- made my own 'baby' food
- bought a wobble cushion (to help with core stability)
- bought kinesio tape (for proprioception - don't worry bendies, I remembered to buy undertape as well)
- bought vega vegan / gluten free protein powdery stuff (as part of my more liquid diet - see previous post)
- bought nuun and high 5 zero electrolyte replacement fizzy tabs
- bought summer arthritis gloves (too hot for my winter ones)
- bought a book about POTS (the kind of dysautonomia I almost certainly have)

All of these things cost me money. All of them are only necessary either because of my impairment/s* or because I am disabled. Yes, some of it is stuff that in an ideal world a physio or OT would have given me, but we don't live in an ideal world. It takes a lot to persuade the NHS to give you something (e.g. a splint) and when they do it tends to be low quality (designed for short-term wear for an acute injury), ugly (beige - don't get me started on the racial privilege behind the term 'flesh coloured'), 'unprofessional' (for aforementioned reasons get scruffy and dirty quickly, uncomfortable (in a one-size-fits-none kind of a way e.g. cheap splints that don't adjust well enough to work with everyone's body), designed to be hidden (see beige) and therefore somewhat disablist (I would rather have a choice of colour to go with what I wear that isn't scruffy, dirty and ugly so that I could wear my splints without feeling the need to hide them. I am not ashamed of my bendy joints).

If you want something different - something designed for longterm use in the confidence that it will be replaced when necessary, something smart / pretty, something that fits properly so I can actually use it rather than it ending up in the splint graveyard - then it can take years, and complaints, and being a pain in the arse, and feeling like you are being done a favour. And even then you will be expected to compromise - price rules. If I buy things myself then I get to choose the design and colour, I get to look at the ethical practices of the company I'm buying from. I get to decide when it needs replacing, and when it's just not working. The only downside is not being able to try things out beforehand, but there are online reviews and return policies, and shops.

Let me give you an example. I needed lighter compression gloves (having bought the thicker ones myself) for the not-winter. My OT only had lycra ones (snags easily) in beige (gets grubby quickly) poorly made (seams started unravelling after 1 hour) with fingers (I need fingerless so I can you know write/type/crochet/eat). They were only useable when I cut the fingertips off and sewed them up, but even so I doubt they'll last a wash. I don't understand why there can't be a prescription like system when if something works you can get it again when the typical lifespan of the product has passed (e.g. yearly). Well, I do understand. The NHS does not always do chronic illness well. 'Health' and 'disability' equipment has a massive mark-up. Especially anything that's a bit different. To get high compression tights / socks that aren't black / beige I need to import them from the states. The tights cost £60, plus postage, plus import tax. I guess this is partly any 'speciality' and partly because they are designed to function alongside US insurance companies and people who can afford to pay them.

Today's 'firsts' cost about £200. I have been delaying getting hold of things I really need because I didn't have the money, I am lucky that my parents were able to help me out. This is why I need DLA - because being disabled is expensive - both in day-to-day stuff (e.g. learning to drive costs more in an automatic than a manual) and in specific equipment.

On a more positive note, each one of these things represents a step forward in the holistic management of my health. None of it's 'fire fighting'. It's all planned, it's all part of a system, it's all a little bit of the whole. I'm feeling good about that.

If you've tried any of the products listed can you comment and let me know how you got on with them? Thanks =]

*What do you guys think? Do multiple medical conditions / symptoms equal multiple impairments? Or is it all together my impairment singular? Does it matter? Am I rambling?

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 =]

It's getting better all the time

This has been a good week in many ways. I have the new wheelchair, which is light and comfortable and supportive, I've had another driving lesson, which I enjoyed as much as the other two and I've made a bit more progress on my DLA form. I feel like I'm finally making progress back towards coping at med school when for so long I've been going in completely the other direction.

Progress looks different to how I'd imagined.

When I decided to take this year out I was still fixed in keepingoing mode. In my head I was getting up and going into placement every day, and the problem was that it was leaving me knackered, miserable and ill. The objective reality was very different. I've struggled with the timetable of clinical placements all the way through uni for various intersecting reasons, but this last year especially.

My attendance and learning were enough that I'd been signed off from placement (up until the last one which I don't think I would have) but I felt very much like I was just going through the motions. I was in the hospital for the least amount of time that I could get away with, and even though that meant I was getting a lot of studying done, my confidence around patients had gone. Indeed, until I started using the 'chair just before I left most time on the ward was little more than an exercise in staying upright/conscious.

I don't think you ever fully realise how bad something is when you're inside it. I had in my head that I would be fine once I'm working part-time. Now that I've got a realistic idea of just how little I can manage if I'm pacing to a consistent level I know that it's going to take a lot to get me back to uni in any kind of a healthy way. And it needs to be healthy. I will not sacrifice my health, or the safety of my patients, to hold onto a dream that's not meant to be.

It's going to take :
- help with my morning routine (for example dressing/brushing my hair, moving around because I'm more fainty/fall-y, making coffee/breakfast etc)

- a short commute in accessible buses that go pretty much door to door or a car and a parking permit that will mean that I can stay in a disabled bay all day (and not only for the 4 hours allowed by the private car park people)

- my wheelchair with adaptations to make it work friendly, such as a holder for an alcohol hand gel dispenser and somewhere to store tuffie wipes for my push rims, a trabasack (I'm getting once for Christmas!) for carrying things like mini sharps bins and needles/syringes etc, and a big sign that says

- a cool vest - wards are kept warm which makes my fainting and slurrydrunkyshakyjerky spells a lot worse plus compression stockings and a heart rate monitor

- reasonable adaptation to placement (such as my supervisor contacting me at least 2 weeks in advance of each month-long placement and providing a timetable, only being placed at hospitals within a short commute etc) which are enforced by the medical school

- being really assertive about my access needs, sticking to a routine, taking my meds etc

- and for studying purposes a laptop I can carry, with voice recognition software (this post has taken 9 hours over 2 days to write, as do most), and a chair/table configuration that works

Baby steps of progress are great. They are much better than going backwards. But to sort all of this out will need : a DLA application, social work assessment, application for NHS bursary, DSA assessment, passing my driving test and some hard dealings with the medical school (I think it's going to get to the point of reminding them of their obligations under the DDA via a lawyer...)

There's still so much to do, and it's all exhausting - and all this need to prove that there's something wrong makes me doubt myself over and over again.

At least now I have a realistic picture of what managing my own care is going to take.

Now I just need to eat this elephant (not really, poor elephants!) one nibble at a time...

Make believe

I'm not even sure if this post makes any sense. It will at least manage to explain why it doesn't make much sense. I'm swimming through treacle.

From Monday I am going to start a thought experiment (check me out, I'm all Derren Brown-y!). I am going to pretend that I have a job and that my job is filling in my DLA form. I will try to spend my week in the way that I would advise someone else in my position to.

This might sound extreme, but the cold weather has brought with it a pain spike and consequent sleep buggeration, so some combination of pain/fatigue/brainfog is destroying my motivation and concentration.

When I'm talking to someone, or cuddling the cat, or curled up in bed listening to the radio, I'm all there. When I sit down to work on my DLA form or to address some of the other 1500 tasks on my to-do list I find myself drifting off into the middle distance and staring at the wall for hours. My head is so cotton-wooly that it's hard to get to the end of a complete thought.

It's not that I'm not getting anything done, just that everything takes hours longer than it should, that even small periods of concentration (like phoning the bank to ask for my customer number) seem to drain me to a ridiculous extent.

I think maybe getting out of the house to go somewhere else and work on the form would help, but I don't know where I could get to. My independent mobility is very limited at the moment, although hopefully the new chair will help. If I can get so I can easily take the bus on my own, then I can go to the library, which would be nice.

So, I'm going to make myself a timetable, set myself up to work in the study, and make a nice to-do list which is acheivable and has lots of small tasks to tick off. My timetable's not too ambitious, but it's a much more regular routine than I was managing before I was off. It's looking something like : up/dressed/breakfast by 10.30*, alternating tasks every half hour (or more frequently depending how shot my concentration is) until 1ish, lunch and internet messing around, 2-4 some more tasks from the to-do list, then a lie down, then dinner, then flop with a craft project for the evening.

I think by pretending I'm at work, therefore the deadlines I set myself are more concrete, that I might get a bit more done. This plus dividing each job into small tick-off-able tasks should help. I hope =/

*I have a bit of an issue about telling people when I get up. It makes me feel really lazy. Since I've had a few weeks of decent sleep I've been managing to get up by half 9, which is early for me to wake up naturally. It takes me a long time to get going even then - I have to follow a certain routine of meds and exercises to get near to awake. I hate mornings. Mornings hate me.

Progress Report = Drunk Zombie

Tonight I am starting to get a bit worried about how I'm going to get everything done that I need to this year. It's 5 weeks since I left med school, and I'm still really struggling with energy/motivation/concentration/brainfog. I feel like I've wasted a month.

I'm scared of starting to drive, because it's a completely new skill and one I don't think will come particularly naturally. I haven't started to exercise, because my local council gym with a swimming pool is 15 minutes away from the nearest bus stop and I haven't figued out one that will be more accessible. The DLA form is really hard going and the local CAB-type place has a 6 week waiting list for helping to fill them in. I still haven't sorted out a plan of action with my GP, or even managed to get an appointment with a non-locum. I haven't agreed any adaptations with the medical school for next year. I feel a bit sick thinking about it all.

Not only is my brain calling me a fail because of the above lack of progress, but I also feel like I'm not entitled to feel stressed about how much there is to do when all my friends are getting ready for their finals / enduring junior doctor-ness. And I feel like crap because I'm not able to do stuff around the house (like laundry, washing up) for Beanie when she's so busy and I'm just sitting around the house all day. And then every few days I decide that I'm being lazy and it's all in my head so totally push the boundaries and then can't do anything for the next few days.

I'm trying so hard to be compassionate towards myself. I would never call someone else in my position lazy, or say that someone was useless if they couldn't work/help around the house.

I think I had this idea that without med school taking up time I could just replace that with working towards all these things that need done. I hadn't quite got my head around just how much my attendance had fallen off, how ill I was feeling every day, how exhausted I was. The difference I suppose is how I'm choosing to spend my energy, and also that I'm trying really hard not to go over my budget and thus end up in the bood/bust cycle that was breaking me.

I keep trying to remind myself that I have been doing stuff, that I am making progress, that it will be alright. I've been to two protests, organised and run a weekend event for the charity I'm a trustee of, visited my parents and friends, made a long train journey alone in the wheelchair, live tweeted the Lords committee stage of the Welfare Reform Bill, applied for a driving license, researched and started my DLA form, ordered the new wheelchair and done a lot of reading and craft. More importantly I've got into a routine with food, meds, self-managent and sleep. I can really feel the difference, but it takes a lot of time and motivation to keep on top of it all.

I told myself at the start of this whole thing that my priorities for this year were maximising my health (physical/mental/social/spiritual), applying for DLA and learning to drive. Put like that it doesn't sound so daunting. But tonight it also seems huge and unmanageable and scary. I need the energy/motivation/concentration to make a plan and stick to it, but even the idea of that is too much. I really feel like I need some help to manage it all, but I can't really think of any way to make that happen.

Seriously, if you could see me now, you would get the brainfog thing. I look/feel like a drunk zombie. I hope it'll lift a bit tomorrow now I've had a chance to rest after the weekend...

Where I'm at

Today I was supposed to start what would at one time have been my dream placement - A and E at a big hospital which is the trauma centre for my city. Instead, Beanie and the rest of my year have started new placements today and I am at home.

At some point last week I realised that I have cried every day since we started back from summer break. There was so much to organise, and so many deadlines and forms, and so little support. The prospect of FPAS applications sneaking in on top of it all was quite dreadful and impossibility confusing. And then one evening I was talking to a friend and it suddenly seemed like the most senisble idea in the world. I take a year out to deal with a lot of the paperwork, to get used to life as a wheelie, to try and find myself some health again.

It was actually suprisingly easy to sort out. Although my disability advisor completely blew me off. I don't think she really gets me. Do most uni disability services have only non-disabled advisors? It's really difficult to work with...

It's starting to feel quite real, now everyone else is at placement, and I'm sitting here making plans for my time. My friend's have been generally quite positive and supportive, but I have a feeling that the med school will ignore me for a year and then continue to ignore my requests for reasonalbe adaptations. I'm keen that they don't see this year as me-getting-better so they don't have to sort anything out. Unfortunately when I tried to raise this I got the impression that this is exactly how they see it. Still, lovely pastoral care doctor is returning to work soon, so I hope to have an appointment pretty soon to discuss this. I'm starting to ponder whether threatening legal action would be an appropriate course of action if they continue to refuse.

They need to stop ignoring the concerns and needs of their disabled, sick and carer students. I just don't know how to make them listen.

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.

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

Round Up

Today's post will cover a few bits and pieces - including Daisy's promised introduction to the NHS couch to 5k programme (she's going to keep us updated on her progress over the coming few weeks). There are also some news stories about disability or the NHS that I would like to highlight.

Hi, I'm Daisy and I'm Flo's fiancee. 4 weeks ago I started couch to 5k using the NHS choices podcast. I would thoroughly recommend couch to 5k to people who are interested in taking up running and don't know where to start. I can't believe I've been running for 4 weeks and I'm excited to tell you a little bit about why I decided to start running and to maybe review some running podcasts/apps for beginners. In my next post I'll explain how the c25k program works and why I started. I look forward to sharing this with you!

We've been asked to spread around this open letter to Iain Duncan Smith from the Broken of Britain, about how it feels to hear a life changing diagnosis, what it feels like to be ill, what it feels like to be a carer or to worry about a family member or friend and their health. It felt especially relevant yesterday, as we were getting our head around the fact that yet another thing has happened to make us feel vulnerable. Please consider sharing that link on your networks, to encourage people to remember that any of us could become ill at any time.

Today (I think) the Commons will release a negative report on ATOS "healthcare"(Guardian story here), the (IT) company who have been contracted to conduct "assessments" for DLA and ESA. There are some awful stories of bad practice out there, assessors are expected to deny people, and the huge number of individuals who are then granted at appeal shows how ridiculous the system is. Reports are almost always completely inaccurate, but it is hard to refute, as any form of recording is not allowed (without huge effort and expense as they require a trained engineer to examine the equipment beforehand). ATOS and the ridiculous system of computer assessment are the reason I have still not claimed for DLA (once I was aware of it), although I have been eligible at various rates for over 10 years now. And now everything's changing, to make these benefits harder to claim. I'm really scared about what will happen to some of my friends and patients, and to me - especially if the appropriate adaptations cannot be made to enable me to work.

Next, Bendy Girl has posted a great video showing what happened at the first 100 Voices conference (you should watch her keynote speech also, it was very well pitched)- a real first - the Brandon Trust (a Bristol based charity supporting those in SW England with learning disabilities) asked their clients with learning disabilities what they wanted their priority to be for the upcoming year. The video is a really inspiring example of facilitating people to make their own choices, rather than patronising them. It's made me think really hard about how I would try and facilitate an individual who was learning disabled to make decisions about their own care. Employment was the issue voted as most important (the variety of voting methods offered was really cool) and the Trust has committed to taking that forward.

This week, the government slipped out the first wave of privatisation of the NHS in the middle of the Murdoch enquiry. Luckily twitter is wise to that trick. Here Max Pemberton argues that this truly is the end of the NHS - because while any aspect is privatised, it is no longer a national, nationalised service. I'm worried, and mainly because any examples of private contracting of other services by the NHS, such as cleaning, seems to have been linked with a reduced quality, because people are treated like crap (but it's ok because it's not directly the NHS doing it...) and so it's not worth it and they're not motivated to do a good job.

I hope you find something to interest you in there. Following yesterday's A and E trip in my placement hospital, tomorrow I'm going to talk about different experiences of A and E. I also took part in my first twitter-based journal club on Sunday. I really enjoyed it, and will post about it later in the week. (Google for more info, their exact twitter name escapes me, but the tag is #twitjc)

Have you come across any stories this week you want to share?

Questions

Over the next few weeks, I'm going to try and find out some answers to the following questions. If you know the answer, or how I might find out, please let me know in the comments. If you'd like to add something else to the list, then leave a comment and I'll do my best.

- What support is available through the BMA for disabled med students
- How to access the BMA chronic illness matching scheme

- What adaptations have been made for people during their final clinical exams, especially those with pain / fatigue issues

- What some other people's experiences are of being a disabled medical student or junior doctor (if you'd like to write a guest post, let me know)
- What some examples of med schools being good at dealing with disabled students are
- What equipment is available for D/deaf and visually impaired/blind medics (I'm curious)

- How less-than-fulltime FY1/FY2 years are structured, other than the basic nights and weekends on a pro rata basis stuff (for example, will I end up doing 4 foundation years? will I have to apply for the last 2 as a locum, or will they be sorted out for me? etc)
- Whether Access to Work or Occupational Health can be any use in providing adaptations for the workplace, considering how short junior posts are

Hooray for showers!

I had a meeting with an OT the other week. As is becoming the norm, she gave me a whole list of things that would be helpful for me, but said that they didn't have funding to give me any of them*. Except for yet another not-skin coloured brace, one size fits none. Then, she had a brainwave. We still have lots of bathboards in our budget, do you have any problems in the shower?

I used to love showers. A long, warm shower at the end of a hard day was one of my favourite things. But over the last year, it'd become almost impossible for me to have a shower in our current set up, with a shower over the bath. On most days getting in to the bath was about do-able, but climbing back out when everything was slippery was decidedly treacherous. Combine that with my propensity to faint at the sight of hot water these days, and my inability to stand still for any meaningful length of time, and you start to understand the number of bruises, popped out joints and concussions I accumulated.

The picture shows a white plastic bath board over a white bath.
The tiles in the bathroom (not mine!) are yellow and blue.

It had got to the point that I was showering maybe once a week, and only with a lot of help, swearing and the aforementioned bruises. Noone (not GP, rheumatologist or physio) thought this was a good enough reason to refer me to OT. I was referred in the end because I "bend my hands in ridiculously disgusting ways", to quote the physio.

Yesterday the bath bench arrived. It is very white (one of two NHS regulation colours, the other being not-skin-coloured) and a bit ugly, but hey. It will make transferring in and out my easier, and will mean I can sit down for most of the shower. Privacy, safety and cleanliness, all in one lump of white plastic. And all for like £30. And the mrs is pleased...it's a much easier way to shave your legs than trying to balance like a stork!

* Some really good ideas though - I bought the beautiful device below, a Breville hot cup, on her recommendation, because I keep dumping the contents of just-boiled kettles all over myself. Means I can have a cup of cherry tea even when I'm not being supervised by the mrs. Yum =)

The picture shows a black and blue kettle-type object,
that dispenses water into a cup placed under a spout,
rather than needing to be poured.

Applying for DSA

I don't currently claim DSA (or DLA for that matter) and I never have, although I would have been eligible for each of the last 5 years at uni. In the first couple of years I wasn't aware of it (the disability service as my uni is useless, more on that later), then I didn't believe that my mental health problems were significant enough for me to need help (I did).

In terms of current issues, the disability service wouldn't see me until after I had a diagnosis, which meant a big delay, and then I find out that they "don't deal" with benefits. The union offers can "help me fill in the forms", but I don't really rate them, especially compared to some of the websites there are around.

I was diagnosed in January, and I haven't had a break since. I have other things to spend my time on rather than filling in miles of form, and I am very lucky in that my parents are able to support me for the time being. My plan is to apply for DSA over the summer, and to leave DLA until after my finals next year. I want to wait and see what the DLA situation is by then before putting myself through the hassle.

I'm waiting until the summer because due to some quirk of the NHS, I've had a fees bursary this year so needed to apply through them, but next year I thought I'd be back to my LEA, and it all seemed a bit confusing. Not it seems I'm actually having a fees bursary next year as well, in which case it's the NHS all along. Never simple...

I am lusting after these gloves - they're like wetsuit material,

and supposed to be much better for bendy hands than
horrible rigid splint supports with velcro-y nonsense all over

I have been told that applying for DSA is actually a relatively pleasant process. I wish I had applied before, but I am trying to focus on the future these days. I'm told that my diagnosis letter is all I'll really need, plus filling in the forms, and then I'll have an assessment.

Having said that, it all got off to a bit of a bad start. (I wish this was a joke but it's not) I emailled the NHS bursary folk saying "I wondered if I could get some information about applying for DSA", and got a reply saying "please return the attached form together with a psychologist's report". I spent half an hour wondering how intense the process must be if they need a psychologist to assess your mental wellbeing first. Until I figured out that the NHS seem to assume that any disabled medical student is dyslexic. I sent a rather snooty email back asking if a rheumatologist letter would do instead, as psychologists don't tend to deal with joint problems.

Even though there's only a year left, there are some things that would be really help.

Have any of you applied for DSA? Did you have a useful experience?

It's all going to be alright

After a glum few days (as evidenced by the cheery nature of previous posts), I woke up this morning feeling a bit more rested. I made some yumtastic porridge for me and the girl to celebrate.

Every few months I have a meeting with a doctor who is the pastoral support person for the med school. I go in full of thing to ask / cry / complain about, and I come out 20 minutes later knowing that it's all going to be alright. I remain in a zen state for anywhere between an hour and a month, because Dr A* has a gift.

She listens. How simple does that sound? But I mean really, actively, openly listens. I have never felt judged in that room, I have never felt doubted, I have never felt lazy, or incompetent or weak, or any of the other things that doctors regularly make me feel. I have only ever felt valued, and cared for. It is a space that I can celebrate successes without worrying that they make me seem less unwell. I think I cry and laugh in equal measure. She knows my fiancee's name, knows that I'm vegan, knows where I go to church, knows that I love to cook and sing and travel.

Today we were talking about me working less than fulltime. She accepted my decision, knowing that I would have thought it through. I told her that I was most worried about being resented by my colleagues and feeling like I wasn't properly part of the time, and she said "You know, and I know, that you aren't choosing an easy option. Your training will probably be as hard for you as it is for your fulltime colleagues, and it will be protracted." It made me feel better. I hate people thinking that I'm lazy, it's something that I really don't deal with very well.

The gift of being listened to, even when there's very little pratical she can do for me within the structure of the course, is unbelievable. I'm pretty sure that without Dr A I would have left the course a long time ago, when I was struggling with my mental health.

I hope that I can learn from her how to listen, to my patients, and to my family and friends. To truly listen, not to try and jump in with easy solutions, or to shy away from hearing difficult things because there's nothing I can do to change them. If I can one day do for someone what Dr A has done for me, I will be a happy woman.

*as she shall be known (yes, A stands for awesome...)