At the bottom of the waiting list agin

Good morning all x I spoke to Pals today at my local hospital to find out how long I will need to wait for a second opinion. All they could tell me was that I go to the bottom of the waiting list as the last rheumy I saw discharged me. I know I've banged on about this already but it really upsets me when this weekend my husband had to zip my jacket up for me and tie my laces. On the plus side...I lost 3lb so that's 16lb in 3 weeks..Yay!

40 Replies

  • Can't you appeal against this? It seems horribly unfair. And do be careful about not loosing too much weight too fast, over 5lb a week does seem a bit much. You need to keep strength up to fight the inflammation, so hope there's some nice food you still can manage to eat. Polly

  • congratulations on the weight loss Paulywoo - are you on a plan? That is awful about the wait to see another rheummy. Keep annoying them to see if you can get up the list and if you can get your gp to do the same it might work.

  • Thanks mads, I'll bother my GP again about it when I go for jabs on Wednesday. I'm just following a low fat 1200 cal diet with the help of a free internet tracking tool. Taking vitamin supplements just in case I'm missing out on anything. x

  • Excellent thinking, You are doing well! I relate, atleast that is one thing you can be in total control of. ( Hate ending a sentence with 2 letter words!)

  • Hi Polly, Pals just basically said there's nothing I can do so I'll just have to wait. In the meantime I've already booked into my GP for cortisone injections into my wrists on Wednesday, although I'm not sure if he'll do both on the same day. I know 16lb is a lot but I'm following 1200 cals a day and lost 9lb in the first week. A lot of that was proably Christmas cake and alcohol! I think I'm using my diet as a focus right now as it's something I feel in control of.

  • Tell them thats not good enough,you have waited long enough to pushed around like that. Write to your chief executive and complain to them,and watch watch happens.

    Well done on the weight loss,tell me your secret.

    Love sylvi.xx

  • Hey that's good news on the weightloss at least but lousy news on the rheumy stuff. I had to push a lot too but was lucky that 2nd apt produced good results. I think it's really good that you are seeing your GP again on Wednesday - please lay it on with a trowel to him or her - if necessary get all weepy with exasperation or get angry. It would be a good idea to convey that you are losing loads of weight mysteriously - RA has weightloss as one of the listed early symptoms so hamming it up and a few white lies will only help your case with the NHS I feel sure.

    I have lost almost 3 stone in a year but still have another 2 to lose - i allowed myself to get ridiculously fat over the past ten years so at least the RA has given me a chance to overturn some of it. I know exactly what you mean about taking control through weightloss although Polly is right to say be careful and keep it coming off slowly but surely otherwise it can do more harm than good to your health and bring on gallstones - which you really don't need believe me!

    But I agree it somehow makes visible what you are experiencing so that you feel you are taking control and doing your best to improve your health even if others won't? Good luck for Wednesday. TTx

  • Dear Linguistics Coach, What is a stone equal to in pounds? :)

  • I can't answer that Loret - absolutely dense when it comes to metric stuff - I've been grappling with killobites and megabites all day trying to send off images of an artwork to a big art prize thing and got so preoccupied with the sizing and getting my head round how many k's in an mgb that I forgot that I wasn't supposed to label the two images with our names and sent them off over enthusiastically so am having to grovel to some woman about this in order that we aren't disqualified! My brain and hands and wrists are all so sore now I'm good for nowt. Ask google it doesn't get fatigued?! TTx

  • Oh dear, I'm so sorry to hear that! Rest well, hope your day ended well. l. xxx

  • "A stone is a unit of mass within the Imperial units system used in the United Kingdom and Ireland, and formerly in a number of Commonwealth countries. It is equal to 14 pounds avoirdupois, i.e. 6.35029318 kilograms." - this may help you Loret - you're a scientist so probably good at maths - but it doesn't help my poor sad old brain at all! TTx

  • whoa! Then whoever lost 2 stone has lost essentially 30 pounds. !! Thanks, Tilda. Hope you had a chance to dip in the parrafin bath with your hands after all that drawing! Get them all nice and heated and wrap in towels to keep them warm.

    I have been having increased pain in both hands, even the left which I don't use as often, and also the bones in my feet are so touchy they don't like touching each other in bed. Haven't had a real flare for couple years, but I have been exposed to more cold recently, plus the drops in barometric pressure!

    Going back to the idea of body transplant, not that I wish anybody a demise, but seems logical. As long as I keep my own head..well yeah, otherwise it wouldn't be a transplant. :) Cheers hon, Hope you are having a good night. Fun conversation today with Sylvi's blog. L. xxx

  • Hi

    I totally agree with Sylvi, you should complain that ongoing treatment is not being followed up. If you look at the NHS Choices website "how to complain" listed below for you. I've put the link below for you. You should put your complaint in writing to the local Primary Care Trust or the Department Manger of the Doctor involved. Also the site lists patient liaison contact numbers for each area to give independent help and support.

    Consultants (aka God) should follow the " patient charter" which you can find also online and read regarding patient dignity.

    You should put your complaint in writing and expect to receive a reply I think its still 14-21 days from receival but in practice its much quicker often! No-one in the NHS likes complaints so they are dealt with thoroughly. Keep copies of your correspondence.

    Good luck and I hope you get it resolved quickly.

    Well done on the weight loss.


  • Thanks for the link Allanah, it'll be my mission tomorrow to read up and come up with a letter. I can't help but think that discharging a patients to be re-referred to the back of the queue is a good way to fudge hospital waiting times. x

  • It could be but in this country we often "put up " with Consultant decisions as we think they are untouchable. Please do keep up the pressure and complain. It would be such a waste of time for you to go back in line. Hope your GP is helpful, and dont forget you can "choose and book" another hospital nearby. Good luck Ax

  • Yes it would be a good way to fudge waiting lists unless it turned out that the RA had damaged you and you'd been dismissed and then made a huge fuss - plus the cost to the tax payer would be far greater if you were to need endless joint replacements and hospital treatment unnecessarily so wake 'em up to those NICE guidelines on early diagnosis Paulywoo!

    But I would start with your GP on Wednesday if I were you because he will be able to get things moving if he thinks you're sufficiently stressed and distraught - which you are of course for very good reason. TTx

  • Whoa! Pauly, If your Rheumy discharged you, does that mean he doesn't intend to see you again, or manage your meds, etc? Doesn't he have to send you a letter stating that, and why? Ohmygosh, I can understand the mess you are in, I would be ranting on somebody's desk!, and I am generally very quiet. :)

    That is not acceptable!!! L. xxx

  • It's because of the NHS business Loret - because we in the UK don't pay for our healthcare we are expected to put up with stuff that you wouldn't tolerate if you had to pay for it yourself. But I agree it is really outrageous and hope Paula finds a good way round it soon. Keep us posted please Paula. TTx

  • You likely pay for your health care, though indirectly, if you pay taxes, have sums deducted from paychecks, etc. It is, I believe this is it, under a master insurance plan held by the government.

    I may need to go back to History class, or Social Studies, etc. cheers, L. xxx

  • Yes, we do pay the way your describe but because it is indirect there's very little individual control over the services we get. We can't go to a specialist unless sent there by our general practitioner, and once you've been to one it's very hard to get second bite at that particular cherry. Waiting lists can also be very long. And lots of things are "rationed" like the more expensive medicines. And yes some people also have private insurance on top so can get more access, but that's very expensive unless you're lucky enough to get it via your employer. But in defence of our poor NHS, when it works it's brilliant.

  • I have seen that. On a day to day basis, it would be nice to not have to pay for each visit.

    I do have a brilliant insurance plan, secondary to Medicare, an automatic plan once we hit the big 65. It's called Medicare supplement and will pick up a percentage of what Medicare doesn't pay. However, I got turned down twice for applications to two different insurance companies, because of my diagnosis and the drugs I take. The third company took a gamble and approved me, on the basis I have not had surgery in the last 5 yrs. I'm holding my breath, in fear they will drop me if I have some calamity they have to pay on.

    I do have to get approval for any surgery, so it's pretty much the same situation in the end.

    The only ones who don't have medical costs are the healthy ones!

  • I think our system is marginally preferable because I'd hate to have to worry all the time about money? With the NHS you get used to feeling that all have a right to heathcare at a certain level - although the reality is that things often fall far short of the gold standard outlined in the NICE guildelines etc. The other point is that if you pay to go private here/ have insurance such as BUPA - most of the best consultants are working principally in the NHS and some don't take any private clients and the ones that do both also have as long waiting lists for private consultations as the NHS. TTx

  • I have been interested in your NHS because there are rumblings here that one of the Republican candidates is thinking of going that route, if he gets elected President, over Obama.

    Not so likely to happen, non of the candidates have the amazing intellect as Obama, nor the gracious, compassionate, caring and brilliant character.

    That GOP party has been hell-bent on doing all they can to get President Obama out of office, by vetoing everything he proposed as a solution to the economy and joblessness. The underlying, unspoken word is, they cannot tolerate having a member of his race lead the counrtry.

    Oh well, I'd better get off the "soap box" before I really get carried away!

    Just want to see you get the attention you need when you need it. all the best, Loret xxxxxxxxx :)

  • I agree with every word you've said as usual Loret so I'm fine about your soapbox even though it's at a distance. But I thought it was Obama who wanted an NHS or am I just very confused?!TTx

  • I believe what he tried to do first was to have every person required to carry health insurance, much the way every car owner is required to carry accident/liability insurance. But it would still be a personal choice which ins you choose.

    Congress couldn't go along with that, so they did write a basic care package for any one who doesn't have personal health insurance. Far as I know, it seems to be working OK, there are some hangups, but I don't know what they are. Might be not so many are falling into that category. I really haven't heard.

    Bottom line is , no one would ever be refused health care on the basis of not having insurance.

    Problem with that is, the entire costs are not covered totally, so hospitals and doctors offices have to operate on less funds.

    This year is going to be very interesting, Prs. Obama is prresiding as industries are recovering, joblessness is declining, companies are reporting profits, thus hiring and increasing production. The recession is definetly receeding, the future looks brighter. The government loans to the auto industry and some banks, has helped turn it around, and those loans are being paid back, thus the government is reducing the national debt.

    Things are looking up.

    Now, I ahve my own pile of bills to pay, came in here to balance the check books, as usual got detoured :) Have a good one.

    Any news from Julieporter yet? Did she have to go to hosp? L. xxx

  • Don't know - come on my blogs for soap box stuff anytime Loret but feel bad as realised we are hijacking Paulywoo's with political like-mindedness?! TTx

  • Oh gosh, that's right! Forgot where we began..Sorry Paulywoo, didn't intend to drift off topic!

    I am concerned about how you will be able to work that out, and hope the cooperation improves.

  • Speak to Gp, explain you have been discharged? Gp shouold have copy of any correspondence! that doesnt sound right? and ask them to to fast track refer you to another consultant and probably a different hospital xx

  • Thanks for all the messages. It's lovely to have so much support. I'm off to see the GP tomorrow for a steroid jab into my wrist which I'm praying will ease the pain and swelling at last. I'll ask him if he made my referral urgent while I'm there. Regarding my discharge letter, it said I have carpal tunnel with no inflammation,swelling or synovitis. I just don't know where the rheumy got this from as my fingers were clearly painful and swollen when I saw him. All I can say is my consultation was very brief and he said my esr of 26(now 37) and rheumatoid factor of 57 were normal and nothing to worry about. I was doubtful but willing to go down the carpal tunnel route but my GP is sure its Ra leaving me stuck in limbo. Oh Tilda, I meant to say congratulations on losing 3 stone. You must be very proud of yourself. Beware though because you're beginning to resemble an owl! x

  • Paulywoo, I would very much be interested in how your steroid jab in your wrist goes, and does it help with swelling? Thanks and best of luck tomorrow, Loret xx

  • Ho ho I'm so wise I know - just as you look like your panting rather?! I like this owl although it's the one I'm doing a study of for son's tattoo so it's rapidly losing it's cute, wise look for me! Weird to think of it all turning permanent on his arm soon?! TTx

  • Had the steroid jab in my right wrist. I've had to book in for the left wrist and the next available appointment is 2 weeks time. Having it done was'nt too bad at all. I'll let you know if it has any effect on the swelling. x

  • Did they tell you to rest the wrist as much as you can for next 24-48 hours to give it the best chance of working - I've been told that when I've had jabs into joints. Px

  • Helix is right, Paulywoo, because, not moving the joint allows the liquid that was injected, to stay in the joint and crystalize, so it stays there for a good length of time, often for months. So don't move it!!:) Good idea to leave the splint in place, sure hope you get the best results from that.

    I will be seeing a Hand specialist Orthopaedic doc on Feb. 10, to see what if anything can be done with my very painful, annoying, useless, can't-pick-up-coffee-cup, right wrist and hand. L. xxx

  • Oh no!!! I've just managed to push the hoover round upstairs..with difficulty. I had no idea I wasn't meant to use it. I'll stop right now. Thanks for the warning ladies x

  • Lol! If you play it right, you could really take advantage of the situation :) No don't, just kidding..

  • Good luck with your appointment, I hope you get some relief. No more typing today as I'm resing my jab now x x

  • Did you talk to the GP while you were there Paula re all that's going on - or rather not going on for you now? That's really good about the steroid jabs in wrists - next time mine get bad that would be my preferred option because it's so debilitating. TTx

  • Hi Tilda, I asked if he knew how long I'd be waiting to see the consultant and he was under the impression it would be about 4weeks. To be honest I'll believe that when I see it. He advised me to call the rheumy clinic next week to check and request cancellations if they come along. Hope you're ok? I'm just making a shepherds pie with lamb and rosemary for dinner and it smells gorgeous.

  • Oh that sounds gorgeous Paula. We have a Jamie Oliver 20min meal off my smart phone app - courgette and smoked sausage Carbonara planned but to be honest I don't fancy making or eating it at all so was just discussing with OH what to make for him and the boys. I had a pub lunch after Tai Chi with friends and had chicken curry and rice followed by my last physio with the short wave device through which I snoozed!

    Is your GP indignant on your behalf? Can he write to a different consultant once he knows who you are seeing? I just don't get how this has happened to be honest.

    Ah well enjoy your dinner sounds yium I'm glad I'm not hungry or I'd be drooling over my laptop! TTx

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