Hello all
Well I was supposed to be having a Rheumatology appointment at 2.15 pm today but the hospital rang me at 11.20 am to say it was cancelled due to 'the doctor leaving at very short notice'. Can't get much info out of anyone else but it seems our one and only remaining Rheumatologist here on the Isle of Man has done a bunk. (For want of a better turn of phrase). My gob is well and truly smacked.
JoJo
Oh Jojo and i was moaning about not getting my anti-tnf until thursday due to not having a blood test,you are having a harder time of it than i am having. I am sending you one of my sylvi hugs for you to cheer you up.(((((( HUGS)))))).....xxxxxx
Thanks Sylvi! Always love a Sylvi hug 
xx
OMG can it get any better for you ?I am truly sorry you are having such a hard time to see a blooming consultant. I hope you get a result soon xxxx
I'm still in disbelief and I can't get any info out of anyone. What a way to mark Rheumatology Awareness! xx
Thanks. Just have to wait and see I guess. Presumably we'll be back on the 'Locum roundabout' 
xx
This is ridiculous. Can't they arrange for you to see someone on the mainland or fly someone in to take a few clinics? To have no cover for a whole community is just unacceptable. Have you tried making a formal complaint to whatever the NHS body is over there. Having read through your blogs I'm gob smacked at how you've been treated which seems totally in breach of NICE guidelines, not to mention the effect on your livelihood.
As you say, all rather ironic given awareness week but perhaps a salutary lesson.........
Hope you get something sorted soon
Ronnie xx
Thanks Ronnie. I don't want to come across as 'poor me' but flipping heck, enough is enough! As the Incredible Disappearing Rheumatologist only took flight this morning so I expect there is panic stations organising locum cover and rescheduling appointments. Watch this space I guess... xx
That is just outrageous!! I'm sure it's the last thing you want to use your energy for, but I really think you should complain big time to anyone and everyone. I know you have a weird structure on your island, but isn't there some chain of command that you could find out about so you can complain at wherever level is above GP and hospital? And a letter to your local newspaper as well perhaps? you must be feeling really let down, so v sorry for you. Polly
Thanks Polly I feel like I'm starring in my own very bad soap opera!
I've informed a couple of MHKs (our equivalent of MPs) and one of them is a rheumatology patient himself and so he was equally gobsmacked! I've contacted a couple of journalists too but they haven't got back to me yet.
Oh gosh, Lilac, that's so upsetting and disappointing. My cousin lives on the IOM in Peel and I had no idea there was such madness re Rheumatology. She has had some joint problems following a couple of falls and accidents and been treated well, and offered hydrocortisone and being seen quickly etc, but she's not got RA so different kettle of fish. Glad you taking action and letting the right people know. Let's hope the guy who is a rheumy patient will take prompt action. As you say, not good other given Rheumatology week. Love to you and hope you get a rheumy back very soon and a new appointment. xx
Thank you. I live in Peel too and our GP surgery is brilliant. Maybe your cousin was referred to Orthopaedics at the hospital , I saw them when I had an op on my knee a couple of years ago and I couldn't fault that department at all they were fantastic
Awful for you - I can't believe it. I was so looking forward to you at last getting diagnosis and treatment JoJo. I hope your MKP gets something done fast for you and all others who need this service. Xxx
You and me both Tilda. I can't get any info from anyone today, it's like they've closed ranks whereas yesterday there was a lot of shock and surprise and people were more talkative. The department has been in disarray for a long time now so hopefully this will be a blessing in disguise and things will improve with a new rheumy at the helm. It can't get worse......can it?
Xxx
That is terrible, is it possible to get referred to uk mainland?? not sure how this would work i believe Isle of man is truly independent??. I was wondering if by any miracle you have already in existance a private health policy, in which case you could see some privately in england?
Well we get referred for some things (such as to Clatterbridge for cancer treatment) but only if it's something that the island doesn't have a department for. We do have Rheumatology just no-one in it apparently! It's horrendously expensive to fly patients across so I can't see them doing that for 'routine' appointments. There was a private health policy at work but they didn't 'recognise' the rheumy here on the island so they wouldn't let me claim. I could have gone with their UK or Northern Ireland suggestions but I was responsible for paying for the flights and accommodation and it was just not possible for me to afford that. Just wait and see I guess...
just a thought as it was last minute, maybe the rheumy was ill or had a bereavement and they couldnt get it covered? just a thought, hope you get another appointment very quickly xx
Well that was my first thought, but having spoken to other people in the medical profession yesterday there was shock but no surprise if you know what I mean. For ages now there have been problems at our hospital, specifically in Rheumatology and Dermatology but also other departments too. There is a huge investigation under way and indeed even the local bishop (just yesterday) offered his services as a sounding board for the public so he can relay concerns to the investigating body.
Xx
Whatever the situation I think it might be time to see your GP and ask him or her to put you on one of the less aggressive DMARDs so you have some cover? My GP knew I'd have a while to wait having made a prompt referral, and put me on Sulphasalazine. Unfortunately I had a bad reaction to it but that wasn't his fault and even after three weeks it reduced my soaring ESR and CRP a bit so if I hadn't reacted badly to it then I would have had a good DMARD keeping the disease under control until I saw the rheumy. Hydroxichloraquine takes about 11 weeks to work and your GP could prescribe it I'm sure? Tilda x
I spoke to my GP yesterday afternoon and she offered to 'up' my dosage of Pred (I'm down to 1mg now) but as I have an ultrasound in a couple of weeks (at least I hope I still have!) I've decided to stay on the reduction plan so that the scan gives a clear result, hopefully.
Got my latest blood test results this morning, by phone from the receptionist at the GP's surgery, and she told me my plasma is normal, CRP is raised, inflammatory markers are raised and my Rheumatoid Factor is raised, does that mean it's positive now? She couldn't give me anymore info so I've made an appt. to see my GP to find out what that means.
Xxx
Sounds as if you are doing as much as you can do JoJo. By the time you finally see a rheumy you will have the equivalent of a degree on rheumatology yourself! If you can get print offs of your blood results you can research what they mean through NRAS and on here etc so that will help you work things out while you wait. Tilda x
Get your MP involved. Mine was very helpful xx
Yes, Jo, I think she was with Orthopaedics and she got prompt treatment. I think they referred her for hyperbaric chamber/oxygen treatment. Have I said that right? She fell and damaged her elbow and ankle and then fell later on the same ankle again and also hurt her knee and elbow. She doesn't do things by half! She was slightly under the influence first time (whiskey warmer after a winter funeral) but an icy path more to blame! Anyhow a Rheumy needs to get him/herself over to the IOM pdq and help you and all the other people who need one. Hope that is going to be very soon. xx
Sorry to hear this, I hope they sort you out another appointment soon, Thinking of you XX
Crikey, Jo, that's awful. Elbow your way to the front of the queue for talking to the bishop, because this is causing you a real problem, and it's scandalous. Hugs xxxx
Shocked at NHS nurse attitude 
BEYOND EXHAUSTION
Shocked at compassion
Update on my neuropathy journey. 
It's getting beyond the ridiculous!
