26 February 2010


i was awoken at 7am this morning. fuzzy headed. friday. ah doctors appointment. as i lay there, not really with it, knowing i couldnt go back to sleep otherwise i would not be coherent, i thought what is this all about?

you read, or see news items where 'other people' have genetic conditions that play havoc with their lives. you dont actually experience it yourself, its always so and so. armed with my little envelope of letters, i got up at 8.15am, sat down brushed my hair, sat down cleaned my teeth, made sure i used to the loo before going downstairs as i knew i wouldnt have the ommph to go back upstairs this early in the morning. placed rosie in the kitchen, and off to the appointment.

first time in a while i got jittery, i had only taken my medication so the tabs hadnt kicked in properly yet and my pulse was 68bpm which for normal individuals is great, to me its like ive been running, i like a pulse in the 40s as im not so anxious. i had butterflies in the waiting room, told myself off and distracted my brain looking at the leaflets even if i couldnt read them properly due to early morning blurry vision. my name was called out and in i was pushed.

i had a list of four things, due to my foggy brain i always forget, first on list referral to hypermobility clinic, me; i would like to be referred to a hypermobility clinic as dr d at kings thinks i should get tested, dr; well i wouldnt know who to send you too.

boom, here we go again, after last year lots of promises of support and understanding from my gp, amount to nothing. luckily i had read alot on the subject, so had my piece of paper with prof g, address,fax,telephone no. i would like to go private due to the waiting times. a bit stern faced, what is their problem? also when i have finished these tests would like to be referred to a pots specialist as im seeing a geriatric (no laughs please) specialist at present. gp; well im not sure, me; i will pay, there is a specialist in queens square london; gp; well that would be very expensive for all the tests, me; the only other option is to stay like this.

i really have changed my opinion of doctors. i thought that they were all for the good of the patient. now as i sit there listening to blatant lies, as sometimes they are, i know that i have to guide myself through this maze. be assertive, not take no for an answer.


Anonymous said...

Hi Em,

Good on you. That is the attitude. I was going to say I am lucky as I finally have a good GP but that's not all true. Sure he sorts out my benefits but here I am 4 years on still getting no help.

Your GP is more like the ones I have experienced. They want the appointment to be short and without need for a follow on. And that is what they get unless you stick to your guns. It annoys me how we are made to feel guilty. Take you for example. Tried for the crime of wanting a better quality of life. It does begger belief.

I hope this all works out well for you. If you keep the same stance then at the very least you will know you couldn't have done any more. It is frustrating though that the ones we look for at times we need them and who are supposed to be the experts seem intent on hindering us rather than aiding us.

All the best


Coffeecup said...

Your gp experience is just shocking Em. Please for goodness sakes change to another practice? Okay, my doctors can't help me because there are no MH services available due to more closures, but, and it's a big but, they listen, they have time for me, they appear to care and that's important. If your lazy arsed gp can't pick up the phone on your behalf and make a few calls to find out where to refer you, then sack him off sweetie, please? His attitude is a disgrace. You're suffering and he is too apathetic, concerned about his budgets, whatever, to get off his butt and do his job.

He ought to be struck off.

On a positive, I hope you do get to see your specialists soon and get your conditions properly diagnosed and treated!! Well done for being brilliantly assertive and confident. It's your life and I hate that your having to fight for your health. Sending you a great big hug and much love....

((hugs)) XXX

Rusty Hoe said...

I have visions of you Wonder Women style, deflecting all his crap off your super hero gold bracelets (complete with sound effects of course). Good on you, reality is that we have to be our own advocates. Congrats on kicking some doctor butt especially when you were feeling so crap.

Em said...

hi nechtan

you said it perfectly, they lay alot of guilt on the patient. why? to send you away. well that isnt going to work anymore. i go in prepared, whereas before i didnt, if this illness is going to teach me anything then its not to listen to aload of nonsense from non caring doctors.

theres a different from being assertive and rude, i havent lost my temper, i remain calm, and sometimes i just act plain stupid and pretend to not understand what they are getting at (with budgets and the like) in general it works with people!!!


hi cc

i think im barmy staying with the practise, this one gp (lady) that i see was ok, but i think she to is not only governed by money but the practise head.

im normally the person that doesnt want to cause a problem, nods in agreement. well not no more in the medical setting. i wish i could transfer this to life in general i need to practise!!

lucky in one way that kings has diagnosed me with p.o.t.s so i have that evidence (oh docs certainly like evidence), to take with me to the hypermobility clinic. then if/when that is diagnosed the mystery is ended. xxxx

hi michelle

i have to remember that, we have to be our own advocates, that is certainly true. it was an uncomfortable stance to take, considering most of the time i would willingly crawl into a corner out of sight. i need to be bolder in general and maybe this is teaching me to be so. xx

thanks for your comments you dont know how much they mean to me, especially after destroying docs meets.xxxxxxxxxxx

Ellen said...

Good for you Em, Alice! I agree with the wonder woman comment! I have also experienced doctors, psychiatrists, who could not be bothered to find out what resources exist in their city for common anxiety disorders, or what doctors specialize in them, or what groups and organizations could help. Really, I cannot understand this. They are so highly paid and privileged - I have to conclude they don't much care.

Well, you seem to have learned from experience that you must learn on your own and advocate for yourself. The professionals aren't going to do this for you. Good stuff.

Em said...

hi ellen

i have come to that conclusion, you have to sort things for yourself. i think our nhs, is ok for the straight forward things, maybe the gp is ok for colds etc. when you enter into the world of genetic illnesses well, back of the queue for you.

i must learn something from this experience. i cant let it drop by and leave without an imprint on my mind. assertiveness, pushiness call it what you want, i need to implement it in my everyday life. hope your well.xxxx

Achelois said...

Em I really really feel for you on this one. I used to be assertive with gp's now I am just disappointed & cynical.

I think people see Professor Matthias for POTS, stress on the think, I know Professor G is in the states in July doing the EDS conference. I hope you get to see him privately in Primrose Hill, it is awful that one feels the only way to get there is via the private route but I really really really understand. Its time you had answers. The problem with rare stuff like hms/eds is that PCT's don't seem to have a rare disease's button on their stupid system.

Don't get cynical like me. Good luck with the referrals. Normally those requesting a private referral to the Prof G seem to get seen quickly. If you are seen quickly then it may be possible for a direct referral to appropriate POTS specialist via that route.

But my brain seems mushy these days so don't rely on me too much. You deserve to have your life back and good on you for standing up for yourself.

Em said...

hi achelois

thanks for the info. fingers crossed im seeing prof g in a few weeks, the referral went of either friday or this tuesday so the doc says. hopefully he can either say i have eds or not.

good to know that he may refer to prof mathais. what would we do without the interent? i would of had none of this knowledge to arm myself when going to the gp.

oh im on the cynical route alreadly ache, after what we have all been through i think its hard not to. i suppose if this can teach me to stand up for myself then that can be a bad thing.

hope you and your daughter is ok.xxxx

Achelois said...

Thanks for the kind thoughts. My child and I have secondary infections it seems from a cold/fluey thingy which no one else seems to have had. Me very boring upper respiratory tract infection she chest infection. We need a holiday.

You may have to ask Professor G for a referral to Professor M! If he forgets in subsequent letter after you see him ring secretary to remind!!!!! Bless him.

Take care sweet em. xoxoxo