So Angry At Lack of Treatment and Understanding

Sorry it has taken me while to write, but I have been really having a difficult time in so many aspects of my life,

Physically, emotionally and well you know, I am so angry could cry regarding the treatment (or may I say Non Treatment)

by my Rheumatologist, I dont see him till Dec but I saw the consultant/nurse the other day, she felt my knuckles, hands, asked

me to raise my arms up etc,,, wrote in her little chart, Then she asked if I felt I was happy with the treatment I was receiving

I told her NO I am nont, nothing is explained to me, I am not able to express my issues I am having, That I feel Like you

just see me and treat me like, well, you just need to get me out the door to deal with the next person, I told her I am really

having bad sharp pains in my right hip, i am having continuous issues with my feet, left knee, right foot etc, she excused herself

a min talked to the doctor, came back and said well were going to do an xray on your right hip and we;ll see you in December when

You see the doctor, She completely Ignored everything else I asked. I am so asked if I could have an injection to help and she says

"We dont give injections" we'll see you in Dec,

My God I was so pissed off, I had to pay to get a taxi from hospital down to the bus station to catch my bus, What the hell

was the point in going, I will make an appt with my GP to address some of these things, and request to see a podiatrist for my feet

as no one is suggesting it, Its as if I have to be my own doctor and ask for the treatment I need, I went on the West Cornwall website for the Rheumy Dept and lo and behold one of the things that is offered as treatment is Injections, REALLY, Maybe someone needs to tell that lady i saw that

I saw my Therapist/counselor last night and told her how I was feeling and what all this is doing to me, and she said I should make a complaint,

she thinks I should write a letter to the head of Rheumatology about my concerns,as One point is..

One of the times I saw my Rheumy, he gave me an injection and said it could last 6 months, but doesnt alway last that long for some people and I have

had another one since, I cant sleep I am in pain, I am having the worst Night sweats, Pain in my right hip, my wrists are killing me, My Fibro is killing me

Its Just everything, And I am Just absolutely FED UP with this Bull shit,

((Hugs)) Lisa

21 Replies

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  • Hello Lisa

    I have just read your blog and wanted to say how sorry I am that you are having such a rough time. I don't know if knowing that you are not alone in your experience with your rheumatology dept would help - but based on my own experience and those of quite a number of others, the sad fact seems to be that we have to fight so hard for the help we need. I am having similar battles myself at the moment and I know that it is really hard to fight your corner when you are already feeling so battered, both mentally and physically.

    I have a couple of practical suggestions - they may not help or you may not feel they are appropriate, but thought it would be worth mentioning.

    First, do you know if your hospital trust has a PALS (Patient Advice and Liaison Service)? They are an independent service intended to help people resolve issues such as yours and many hospitals seem to have them these days. I discovered them at my hospital a little while ago and they were absolutely brilliant in helping me sort an issue I was having. They were able to liaise with the relevant dept on my behalf and I wouldn't hesitate to use them again. If your hospital does have such a service, you may find that you can email them if you don't feel up to talking to them in the first instance. My health authority lists the contact details for their PALS on their website - so it might be worth a look to see if your hospital has one.

    Second, I think your therapist's letter suggestion is a good one and if you do this, it might be a good idea to copy your GP in as well? I find it easier to get everything down clearly in a letter than trying to explain face to face at an appt or on the phone. It also gives the opportunity to have several goes at putting the information together, so you can be really happy with it before you send it.

    I don't know if any of this is helpful Lisa, but I really do understand where you are coming from and I really hope that you are able to find a way to move this forward soon.

    Thinking of you.

    Tillyx

  • Lisa i have sent you an email. If you want to skype me feel free. love sylvia.xxx

  • Nothing to add that has not already been said, just wanted to say that will be thinking of you and hopefully you will be sorted soon. Good Luck.xx

  • Hi Lisa,

    I understand what you are saying, they just get through your appointment as quickly as possible and you come out feeling totally bemused. I can't add anything to what Tilly says, just wanted to give you my support.

    Keep strong.

    Mary x

  • Just wanted to say thank you to all who have responded to my plight, and I will def take all into consideration, but wow I had no idea, being ill was such a chore, well the getting ill part I get it the having to fight for help that I dont get, I couldnt treat an animal like this I will take all comments onboard and do the best I can to get something resolved, XX

    Thanks again everyone

    Lisa XXX

  • Yes, definitely contact PALS and see what they can do to help make sure you get better information and a chance to really get a good treatment plan.

    Also, something I have found really helps is to take someone with me to appointments like that. A good friend, family member or spouse. Somehow you get taken more seriously, get more things explained, and the person you take in with you can also ask questions if you forget something, or remember what has been said.

  • Sorry Lisa, came late to this and if you read my blog you may see why!! But just to add my support and wish u luck xxx

    Axx

  • Hello Lisa. I am sorry to hear about your inconsiderate treatment of your nurse..shocking.

    I agree with the others and get her name and complain. It is through no choice of our own that we are landed this nasty disease. Big hug and good luck x

  • lisa im so sorry you are having the run arround like me

    i saw the rumatotologist and they make more exuses about your body it a bit like the tv show bread going to the dole 10 words to you and NEXT.

    i ended up paying a consultant rumi to find what the hell was going on with me after seeing the knee specialist.

    and he new what was happening why did the other rumi specialist not

    if ya leave a dog alone with a broken leg and it trys to walk on it other things start happening to your body to compensate for the bad leg thats what i belive and this appears to me is what you get on the nhs. IT MANAGABLE THEY DO NOT CONSULT WITH YOU.

    all the money they are on for this

    i next see the knee specialist on the 10 oct WHAT THE HELL HE IS GOING TO DO I DONT KNOW WHEN I SHOW HIM MY HANDS SWELLING LUMPS. so i have gone full circle in 6 months probabably send me streight back to rumatoligy MORE RUNNING ROUND.

    i to tried with my doctor to see a podiatrist didnt listen.

    i fixed the problem on me own last time but this time it appears to be diffrent kettle of fish its miles worse of a fight.

    SO LOOKS LIKE OTHER PEOPLE ARE IN THE SAME BOAT how many others are their i wonder who are not on here.

    regrards john.

    ps lisa it was comforting to know that you SWEAT like me in bed some days no sweat other days when i push it sweat like hell weat through.

    i would be interesting to know about your sweats lisa cos that one frightens me more than this disease.

  • Hi Lisa, sorry to hear that you were treated so badly. Getting the PALS service is a very good idea but if you are going to write a letter of complaint I would address it to the Chief Executive of the Trust rather than to the head of rheumatology that way your complaint will be definitely be responded to according to strict NHS guidelines. x

  • So sorry you are feeling so upset. All of above is so true. I also have had my issues with doctor's. Try and be strong.....we are strong because of this disease. Hope you feel better soon big hugs to you x

  • Hi Lisa-I'm so sorry that you are going through all of these problems. Perhaps there is another Rheumatologist in your hospital that you can see. Thinking of you.

  • Hi Lisa, sorry your not having any luck with your RA , doc i must be lucky where i live, ive been very down with my RA, also very painful wrists, i went to my gp, and asked him for the injections, he said he dos'nt do them in the surgery, ask your Rhumy doc, i was lucky i had an appt due in 2 weeks, i went there and said my wrists were really getting me down, more than all my other joints, he askd would i like an injection and within 2 minutes he had done the both for me which has eased the pain , but not totally gone, hope you have some luck with your soon, it's not as if we're asking for the sun+moon only help for the pain we are all in, good luck love and take care Linda x x x

  • Thinking of you, everone here made great suggestions. think about complaining sending hugs hang in there xxxx

  • Sorry you are feeling so low.

    Hope you can sort it out, you really don't need this on top of everything else.

    Nic

  • I have said it all before, all they want to do is look at your hands and

    move you along.

    They have no time to sit and chat these days but then that appears to

    be the same across the board, GPs the same.

    When I was diagnosed some twenty four years back things were different,

    doctors had time to talk and albeit my illness was in the early stages I

    was treated with respect and genuine interest and I was doing well.

    It so helped having a consultant who treated me like a friend and sat and

    listened, he knew about ME not just my pains. Today they all talk like what

    they are, strangers who are rushed and impatient to move on!

    I do not see it ever going back to the way it was, maybe if one lives in a

    part of the country where a slower way of life still exsists, if there is such

    a place keep it to yourself or I for one will be moving there!

    My advice to those new to the RA club is, take someone with you on

    appointments, ask them to take notes as you may miss something,

    write down beforehand questions you want to ask.

    Oh, if they ask about your hands by all means show them but if your

    feet are hurting ask them to check them also, in the latter years I have never

    even been asked how my feet are!! the illness started in them and my ankles

    but it appears they do not count. Give me strength.

    Good luck Lisa and John

    Ann

  • Thinking of you. PALS will deal with all your issues .

    Hugs. Carole

  • I know exactly how you feel. I have taken myself off mxt as I could not live with the side effects. I spoke to the hospital nurse who said that there was nothing she coud do as only the doctor could change things, this was back in May. I have finally got an appointment at the end of October. I have also seen my GP who said well the drugs don,t help in the long term so I may as well accept my lot. So now I still have Humira injections which make no difference any more. I also cannot sleep more than a couple of hours before waking up in pain from my knees, hips, elbows etc. and now my eyes feel dry and sore all the time. I think there needs to be a wake up call to some hospitals that we are people with lives to live and not just a number in the queue. Anyway hang in there and keep trying, I am taking a friend with me to my next appointment for support and backup. Also the nras helpline are great when you need a bit of support and someone to talk to

  • They do like you to just do what they tell you and shut up, I guess it makes life easier for them. I have had to change rheumys because of that treatment, ionce they have started treating you like that, that's how they see you. Try and get another and sit down with them straight away and tell them everything you didn't like about your previous treatment, that's what I'm going to do, keep us posted on how it goes for you. I'll let you know if my plan is any good :)

  • Hi Lisa, how awful, but it seams that we all get some of this treatment at some time or other, it shouldn't be so, they of all people should understand. I wrote a very long letter to my GP asking for an explaination as to why I have all these symptoms yet no joy with treatment, I copied in my Consultant, this made her write and ask for my appointment to be moved forward, that was a waste of time as I still had to wait untill the appointed time, the GP just replied to me one line letter that all these symptoms are RA. then when I saw the cons I was ready for a fight but instead He was running late and gave me less than 5 minutes, when I tried to ask some questions as to why I felt this way He said He was the consultant and his word goes....He also insisted I saw the Rheumy Nurse that He knew jolly well I struggle with. I hope you get some joy with what ever course you take, and that sooner rather than later your treatment starts to make you feel better. fortunately I am feeling much better so the treatment of raising MTX to 20mg, feeling more sick and bloated, but no aches and pains which is a blessing. Really hoping that you get some where and feel better soon. Love Carol

  • its about time we really fought back and go to downing street again.and really make them take us seriously .my nurse was same well if you dont take methtrexate.thats the best one they reckon ive been on a load of other meds and i didnt get on with them i havent.i felt like a kid being told off for playing sick at school its disgusting the first nurse i had died of cancer she was brillant my specilist is good .he even checked my doctor was doing what shes spose to.also lost my job to ill health ra.and appealing esa .cause atos says well enough to work.weres are rights gone freedom of speech its dreadfull.i think we should all start sticking up for are selves everytime we go in state are position even tape nurses conversation.ra fight back weve had enough

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