Doctors, scans and frustrations!

Hi everyone, sorry major whinge alert here!

In my mind right now I am having the screaming ab dabs, a full blown toddler tantrum, stamping my feet, screaming, crying and throwing things til they break. But physically I'm sitting gently on one cheek on the sofa, seething, writing this.

Basically I've been having tests for RA for over a year now but nothing conclusive despite being off work since October with gradually worsening symptoms. Saw the proper consultant back in September but since then I have only seen locums who don't seem keen to make a solid diagnosis seeing as they're only there for a short time.

Saw my GP at 2pm today, she's lovely, very caring and sympathetic, just what you want from a GP. She's great, She told me how she'd sent a letter to the Rheumatologist demanding that he sort some treatment out for me and that HE should see me personally next time not another locum. Anyway the reply came back that the Rheumy said he would make a diagnosis based on the results of my scan requested by the locum I saw back in December.

Ah yes the 'scan' , that brought me to my next question, I'm seeing Rheumatology on 3rd April and I still haven't had the ultrasound scan appointment through yet I'm worried it won't be done and have the results back before my Rheumatology appointment.

My GP thought that was a little odd so she rang the radiology dept. and asked to speak to the ultrasound guys. Explained the problem to them and I saw her face change, she said 'Oh really? That's very interesting....thanks' she put the phone down turned to me and said 'Guess what?, apparently the Isle of Man no longer do ultrasound scans on hands and feet for Rheumatology, obviously the locum who requested this didn't know that but as soon as they (radiology) got the request they wrote back (does no one use email in the health service?) saying we don't do that anymore do you want to arrange an MRI scan? But they've not heard back.

So to recap my Rheumy says he's waiting on the results of a scan that isn't even performed here anymore before he makes a diagnosis. What the hell?

My GP is so angry, she said she can see me deteriorating before her eyes but there's nothing more she can do without Rheumatology's diagnosis. She suggested I take someone with me to my next appointment to help fight my corner. Flipping heck, What's the world coming to when your own GP recommends you take someone to the hospital to help fight your corner?

Sorry for the rant I'm just so mad and disappointed and scared all rolled into one right now

P.S. Here the Isle of Man has it's own version of the NHS but it isn't the same as the UK's so we don't have Patient Charters, or PALS, or the right to choose another hospital. It's put up or shut up and right now I am not inclined to do either....

[helixhelix]

Well I'm seething for you too! That's dreadful...especially as there's a huge body of research that says sooner the better as far as staring treatment goes rather than in years gone by when you waited 'till you could only crawl to the doctors before anyone would bother. And as for the scan!!! Ultrasound is miles cheaper than MRI so what the hell are they playing at?? My foot person has a portable one, in a nifty little suitcase, that he says costs a few bags of peanuts but really helps him see what's going on. You may not have PALS, but do you have an MP? Turn your seething into an EXTREMELY rude letter to him or her perhaps?

[cathie]

I think there have been other comments like this from the Isle of Man. It sounds disgraceful and I'm wondering to whom you can complain - MPs? Is there anywhere you can go off the island for a proper NHS check and treatment? So sorry to hear this.

C

[cathie]

Polly - great minds!

[Hidden]

Thanks girls. I am thinking of contacting my MHK (our equivalent of an MP) I don't know if it will do any good but I can't go on like this. Also as from next month my sick pay reduces to 60% of my normal wages which I know is brilliant as some people don't get any sick pay at all but it will barely cover my mortgage let alone other bills and food. So I really , really need some proper treatment and to get back to work asap or else I'm going to be homeless on top of everything else

We can only be transferred over to the UK NHS if we have a condition that isn't covered by our hospital. Though I'm seriously doubting our hospital's capability in the Rheumatology dept. right now...

[Hidden]

Oh my how badly you are being treated. This is disgraceful, i hope you get some joy from your MHK, somebody certainly needs to give them a kick up the rear end. Just a note about your sick pay can you not get some help from benefits agency regards helping you with your bills it would be worth asking the question you never know you may get some kind of help i'd give them a ring and see if they can help. i hope you get some one to sort it out for you so sorry to hear your news. Let us know how you get on. take care. Lena xx

[miss]

Hi how dreadful. Apart from MP complaining could your GP also point you in the wright direction to complain in the medical direction? Coz your treatment sounds abysmal so far. Good luck to you xx

[Hidden]

I'm speechless - thought Orkney was bad but your system seems completely punitive to me. I think I would be tempted to move to a better place for rheumatology if I were you but I know that's not as easy as it sounds. I really hope you can have an MRI scan asap and agree with Miss that you should ask your GP who exactly to raise the whole situation with in the meantime. My GP put me on Sulphasalazine while I waited for his referral to be registered and to see the rheumy which took about 4 months. I wonder if yours could do the same for you perhaps as it's not like steroids and doesn't mask anything but might at least give you some cover while you wait? Tilda xxx

[Hidden]

Thanks for all the support everyone, I really do appreciate it. I'm still reeling from the news that I've been waiting since the end of December for a scan that was never going to happen anyway. I'm going to sleep on this (if I can get to sleep that is) and then make a plan of action tomorrow. There's part of me that worries if I make waves I'll get 'blacklisted' I know that's just my paranoia kicking in but I don't want special favours or strings pulling I just want a proper diagnosis and appropriate treatment. I'll keep you posted tomorrow!

Thanks again everyone xx

[allanah in reply to Hidden]

when i made a fuss about my op being cancelled 4 times i worried about being a scapegoat, but no the staff were lovely as it was out of their hands and they really felt bad for me xx

[Hidden]

I'm trying to restrain the purple prose here .... I'm horrified by how you've (not) been treated. I understand your concerns about being blacklisted .... well, I'd fear that 'they' might be a bit uncooperative .... but they couldn't really get much worse could they? And actually I do think that if your complaints are firmly based on your very understandable & justified concerns for your health then you are likely to get a positive response.

The well-acknowledged need to treat RA & other forms of inflammatory arthritis swiftly, your physical suffering & anxiety, the time off work ...... it all adds up to a very strong case.

I think you should put this case to your Rheumy ASAP - he's also waiting on a scan that may not happen and, presumably, should have the clout to get an MRI ordered instead. It also sounds to me as if there just might have been some sort of a mix up that he would be able to untangle.

Thank goodness you have a good GP ... but I think she needs to help you access key individuals right now. Looks to me like the Rheumy might be the best bet but also who is in overall charge of the health service on the island?

Good luck with this, please keep us all in the loop, Luce xx

[Hidden]

push for the mri, I had a long wait for ultra sound appoint uk, not all sonographers yes thats the name have trained in joint ultra sound a technician can do babies but not joints, a Dr of ? did mine it was v interesting so a "red" wosh were there was inflamation (false colours are added to see the necessary things xx

[Dotty7]

That is a terrible situation to be in. Make sure your GP lets the rheumatologist know as soon as possible, and make sure that he writes and lets the rheumatologist know everything that is happening, both physically and in terms of your work/pay situation. He needs to see this as really urgent, rather than rheumatology-urgent which is not the same thing at all.

Good luck,

Dotty xx

[tilstongal]

Why do they do this to us? For goodness sake we are ill! No one in their right minds want what we've got why can't they just treat us with the best care possible instead of putting us through all this stress. I feel so cross for you. Good luck for the appt. make your feelings known what possible harm could it do? And you never know they might just get on with treating you. Good luck!

Tilstongal

[allanah]

Definitely get your mp involved !! Ultrasound is easier, cheaper and less worrying, i hate mri's and would refuse too have one done just to see inflammation in my hands,,,,,nonsense!!!!

Go to town on this one, go to the press ! Ask the chief executive of the hospital who made this stupid decision. That is a really awful situation in your area that needs changing. This is NOT putting the patient at the centre of the care, MRI scans are generally booked every hour of the day, ridiculous!!! Maybe they dont have enough ultrasound technicians on the island, get some!!

Now i see why you are upset and whinging, I would be 100 times worse!! Rant over , hugs Axx

[allanah]

Also your hospital should have a patient liaison team often called PALS..ring them!!