Feeling let down by doctors

[darkangeles]

I completely sympathise with how everyone feels here. It took my first rheumy 10 years of my childhood to diagnose my HMS. I was finally diagnosed in my teens and after loads of physiotherapy I was sent home and told not to come back. I've suffered many subluxes of the knees, hips and shoulders over the years (i'm now 28) and have always coped with it all by myself until recently where I have deteriorated quickly. Luckily I have a really good GP now who actually listens to me, but my new rheumy on the other hand isn't so great.

2 and half weeks ago I severely hyper extended my left knee and since then I have had continuous subluxes with every step even with a sport knee stabiliser. I've been housebound ever since as using crutches too much causes my shoulders to dislocate. My GP was fantastic, gave me new meds to cope with the pain straight away and a steroid injection into my knee to cope with the swelling and since I only had to wait 2 weeks for my rheumy appointment, he tried to make me as comfortable as possible to wait out my appointment. But the rheumy just didn't seem bothered. He didn't look at my knee at the appointment, just said he wanted me to wait a month to see if my knee would heal by itself before getting my GP to refer me to an ortho surgeon for an arthroscopy! I even explained to him how I couldn't leave the house due to my shoulders with the crutches, and now with the way I am walking it is causing my hips to sublux but he just didn't seem interested and sent me on my way.

I will be going back to my GP to see if there is anything he can do to help (yet another taxi expenditure) but until he gets the letter from the rheumy which will take atleast 2 weeks there won't be anything else he can do just yet. I'm stuck for what I can do other then that right now. xx

[mrsc2b]

I also sympathise. I've been referred to pain management, had 2 lots of diagnostic steroid injections to find that they dont work. I've now been re referred back to my GP to another pain management place for a course on pain management. I still dont know what is wrong with my back - my mri didn't really show much. All I know is that I'm now on 2 sticks as my back is so painful I can't walk any distance without them.
Hoping to actually see my rheumy this time instead of a stand in!

[xxxxlollypopxxxx]

hey guys,

some of you might have seen my post back in Jan on the thread about prof G asking how long it takes to get an appointment, and also saying that my GP's had been sitting on a letter from the MSK team reccomending my referral since november and not doing naything about it. when i went that day and asked about the progress of the refferal, she said that it hadn't been done but she would get on it straight away.

today i went to see a different guy (only one i could get an appt with), who was a bit of a jerk. (imagine the crazy chinese doctor from the film knocked up, then think about him fast forwarded and not listening to you) i asked abou the referral and he said that it still hadn't been done, it was 'lost in the system' but would be done today (haven't we all heard that before). then i asked him about pain relief as in the time i have been waiting for this b****y referal my pain has gone through the roof. i explained that paracetamol and ibuprofen dont even touch it, and that ive been taking co-codamol which is a bit better but still not great. all he said was that as i'm 18 i shouldnt have to buy co-codamol OTC and wrote me a repeat prescription for it, asying that Prof G's clinic will be able to give me something better. well thats all well and good, but i havent even been reffered to prof G yet, have i?!?!?!

i'm so angry that he didnt even listen to me, and wasnt even apologetic about the referal. he knows as well as i do that i'm going to be waiting for ages to get to the clinic, and i dont really want to be taking a painkiller that's supposed to be addictive after 3 days use and doesnt even leave me pain free until then.

can someone advise me? if i was a real 'grown up' i'd probably complain, but i just feel like i wouldnt be taken seriously

[leashy11]

I think you need to complain to the practice manager, problem is the doctors don't much like it and when my ex complained about something the next time he phoned our surgery they accused him of being rude to a receptionist when he wasn't so he switched surgeries after that. You could of course change to a different practice.

I took cocodamol every day for 3 years and when I stopped taking it didn't have a problem with addiction so it may be the same for you. Sorry this isn't much help and I hope you get things sorted out soon.

[madmum]

You should complain. You are an adult. I would also look at changing gp. Also ask the practice manager to fax the referral to prof g marked urgent and phone you when it is done. I did that and got a quick appointment.

[Spireite]

I think you have to complain to the Practice Manager. Years ago when I did that I got put straight through on the phone to my elusive GP when usually it was a case of ring back next Tuesday between 10.30 and 11am when the phone will certainly be engaged. The only way they will do something is if people complain and take up their time and stop them snoozing. By the way I thought all GPs were a bit or a lot of a jerk, or maybe it is just the few dozen I have seen.

Also recently it took my Practice Manager (no not the GP - nothing to do with him) four months to get round to doing a referral for me with a lot of chasing inbetween all her many holidays. You don't hear about that in the media - just the 18 weeks target, if you are not rejected, like me when you have to wait years for a first appointment. I'm afraid you have to chase daily to get anywhere.

[xxxxlollypopxxxx]

thanks for your support guys, but i dont know, i'm not sure about complaining.

my parents are GP's and i know how much of a big deal it is when a complaint is made, and although i'm annoyed i kindof don't feel like its that bad. i wouldn't even know how to go about making a complaint?

[madmum]

Phone the practice manager and explain the problem and say this has gone on for too long and you are not happy. A firm word may be enough to get action,if not then go to the c.a.b.

[poppysmum]

Wow.

7yo Dd has been finding it really hard to get up these past few weeks. Initially I thought she was ready for the Easter holidays and lots of lie-ins, but it was getting beyond a joke. I mean, literally, I was going in her room at 7.30am to get her up for school and it was like I had gone in at 3am! She was snoring, drooling, rosy cheeked, absolutely dead to the world. I'd peek under her eyelids and her eyeballs were rolled back in her head and she was totally out for the count, so I'd leave her until 8am. Still no sign of life. Out of curiosity I let her sleep, and it was 9.30 before she stirred. Before you ask.... she goes to bed at 7pm, and yes, she drifts off no problem, and no, she doesn't usually wake in the night and if she does, it's usually about 9ish for a wee, but that's a rare occasion. If she wakes in the night with pains then yeah of course she's extra grumpy and sleepy but on these occasions I'm describing she had a lovely good nights sleep. this carried on for a few days and then she complained of pain in her left eye and her left leg. (Her left leg is her worst enemy, it always has been.)

Eye test perfect, so off we trotted to the GP to check whether an underlying problem was the cause of her fatigue etc. This GP we had never met before but I explained the history and everything, and she proceeded to ask Dd "In the morning when Mummy comes in to get you up, what do you do?" and Dd replied "Sometimes I pretend to be asleep because I want five more minutes." Which is obviously open to interpretation and also is typical of a 7 yo. Anyway, guess what the GP diagnosed? Cheeky sneaky lazy behaviour by Dd and more effort needed on my part! No further questions, no further interest in that problem of ours, then examined Dd's leg, after which she diagnosed growing pains. She reiterated her suggestion of being firmer in the mornings and I shot out of there rrrrrrrapid and in tears called our physio, who as per, was a diamond and suggested an action plan making session for us and a school visit and other such things.

Is this normal behaviour by GP's?? I could not believe it. I knew to expect people to assume HMS sufferers were lazy etc but a GP?? Do some GP's believe HMS is but a myth?!

[GreenLantern]

I got diagnosed a few weeks ago as having EDS type 3 hyper mobility, I received a letter today from my GP saying that EDS type 3 (He put ED type 3) is rare and that there are many features i simply do not have.

I can not stop crying because now this means I will not get DLA, I can not afford to eat, can not afford pain medication and can not afford to look after myself.

Please help, tell me what to do, I can not stop crying

[madmum]

Who diagnosed you? Phone them and ask for a copy of the letter confirming diagnosis. Also there are lots of leaflets and info available you can put together to show what the diagnosis involves and how it affects you. Doctors so often do it. If it is a specialist then get them to fax a copy of their letter to the gp and politely point out the diagnosis. Also suggest to the gp he looks at the forum. If it is rare and complex we must all be rare! We are here to support you,chin up mate,all is not lost.

[GreenLantern]

The GP diagnosed me, he didn't send me to see a specialist but my physio who I saw today was going to have a word with him and ask about sending me to see a specialist.

To say I'm gutted is a understatement, I can not stop crying, I'm shaking and I'm angry! My partner is on the phone to him now, I can not speak to him, I will just end up crying or getting angry.

[madmum]

Urgent referral to a rheumatologist specialising in hms is your next step. Your gp owes you this. Provide his surgery with info on the condition. I had to fight for 5 years to get my son diagnosed and still the local hospital will not believe it. I would also consider changing gp. Good on your husband for speaking for you. My son was turned down for dla as they said he did not need enough help! Did not appeal at the time but may try again now he is on school action plan and proving he needs help. Are you a hmsa member? If so they may be able to support you if you phone them. You can call anyway,you do not need to be a member. They really helped me with my son.

[GreenLantern]

My partner has just finished the phone call with the GP, he told the GP that EDS type 3 and hyper mobility are the same thing, the GP said and I quote

'that is your opinion'

!!!! WTH!

my partner said 'that is the experts opinion from the HMSA conference in 2010' they confirmed there that it was the same thing, it also says on Wikipedia and look at the hypermobility page under the diagnosis section it says there that EDS type 3 and hypermobility are the same thing.

[GreenLantern]

The GP is going to refer me to a rheumatologist specialist at the hospital, the problem is I am going to the CAB tomorrow for my DLA appeal and my appeal has to be in by 10th may!

He diagnosed EDS Type 3, he put it on my records but now has back tracked and said I have 'what is termed A hyper mobility syndrome'

Do you have a number I can call please?

Thank you both for your help.