Feeling Deflated

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Sarah01
Sarah01 Member Posts: 192
edited 6. Jun 2014, 12:01 in Living with Arthritis archive
Hi everyone,

Hope you are all well. Feeling a little deflated this week. As some of you know I had problems with my knee following my THR in January. Saw the surgeon 6 weeks ago who referred me to my local hospital for a knee brace. They refused to fit me one which set me back 4 weeks.

Saw the surgeon 2 weeks ago who sent an urgent referral to the hospital in his area. Rang them yesterday as I had not heard anything, it is an NHS hospital and even though I am an NHS patient I was told I will be put on the waiting list. When I explained it was an urgent referral they stated that I would be looking at a minimum of 10 weeks before I got an appointment letter. Spoke to my surgeon's secretary yesterday who promised me she would get the surgeon to call me after his clinic yesterday. I am still waiting for him to call.

Both the surgeon and physio said the muscles surrounding the new hip will not strengthen until I have the new brace and can start to do more exercises and become more mobile. I have severe pain in the knee now and I struggle to walk up and down the stairs. I have to rely on the crutch at the moment as the leg is too weak to function on its own and I still have a limp. Last week my leg gave out at work and if one of my colleagues hadn't been there to grab me I would have fallen in a crumpled heap at the bottom of the stairs. That was a scary moment.

I feel like everything is going backwards not forwards. I wish there was something I could do to expedite the appointment but apart from pestering the surgeon every day, which I can't do, I feel I just have to sit back and grin and bear it.

Sorry for the moan but just had to get how I was feeling off my chest.

Sarah x

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Oh dear. I have not been in this kind of situation but I can understand the feelings of frustration. Your surgeon is looking at it from his point of view but without paying any heed to the views of other people involved with this - and they are many. He wants this for you NOW but they have another agenda hence the wait: I suspect that agenda must be to do with knees rather than hips but I don't know. I know this, however, it's not easy for you. I am so sorry. :( DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    This must be so worrying. Should you be working when things are so bad? It sounds like a far from ideal situation.

    Have you been given the exercises to do once you get the knee brace or will you then have a further wait for a physio appointment?

    It sounds as if your NHS Trust is struggling to cope. It's a growing problem. “Number of NHS trusts struggling financially doubles in just one year ”
    http://www.independent.co.uk/life-style/health-and-families/health-news/number-of-hospitals-missing-cancer-targets-quadruples-in-just-one-year-9145
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Sarah01
    Sarah01 Member Posts: 192
    edited 30. Nov -1, 00:00
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    Thank you DD :)

    It is frustrating as it's gone on long enough. When I spoke to my surgeon 2 weeks ago and told him that my local hospital wouldn't do it, he put it down to NHS politics. I told him it was my hospital's politics as they have a very bad reputation. They are renowned for poor standards of care :x

    I was talking to hubby online tonight and telling him about it, he thought I should ring my GP and have a word with him and see if he can expedite it, especially after the near fall down the stairs. It's hard for him being so far away and not being able to help.

    How are you doing and how is the arm? Last time we spoke your arm was healing well and you were starting to feel better :)

    Sarah x
  • Sarah01
    Sarah01 Member Posts: 192
    edited 30. Nov -1, 00:00
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    Hi SW,

    It is worrying and frustrating. My hubby told me tonight that I should think about getting signed off work again especially after the scare with the stairs, but I think I could be in dangerous waters if I did as I have only been back just over 3 weeks after my 20 weeks off following the THR. I said to him that I could easily have done it at home. If I get signed off again I think I would cry, being at work is giving me some normality after being off for so long. I'm office based so I get up and have a walk around every hour as per surgeon's orders so it's not too bad.

    I've got no exercises as yet. I still have my THR class every Thursday and I have some different exercises from the physio that I can do at home that doesn't impact the knee.

    My local hospital is not the best in the UK by far. I've heard and experienced first hand the poor standard of care by the A&E department and some of the wards. I will not say anything bad about my physio as he has been an absolute godsend and he fully supports me and sympathises with everything I am going through. He wishes he could do something to help, but he knows he will hit the same brick wall as my surgeon did.

    Hope you are keeping well :)

    Sarah x
  • krisbe
    krisbe Member Posts: 95
    edited 30. Nov -1, 00:00
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    Oh Sarah you poor thing, you were doing so well. You should definiteley speak to your GP and if you have one at your surgery on the CCG then that is even better. To have to delay your treatment is ridiculous. Hope you get it sorted out soon. x
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
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    What a saga, and how frustrating as well as painful and frightening for you. Have you thought about putting in a complaint to PALS at the hospital you are having problems with? They might be able to put some pressure on.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • Sarah01
    Sarah01 Member Posts: 192
    edited 30. Nov -1, 00:00
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    Hi Krisbe and Slosh,

    It certainly is a saga, an ongoing one :roll:

    Funnily enough I have just sent an email to PALS at my local hospital, quite a long one I might add, so here's hoping :) I am also going to speak to my GP first thing tomorrow morning and see what he says. Will keep you posted on any progress.

    I am now going to have a long shower and put my feet up, it's been a long day at work today and I am ready for some "me time" :)

    I hope you are both doing well :)

    Sarah x
  • jeanniep
    jeanniep Member Posts: 42
    edited 30. Nov -1, 00:00
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    Hi Sarah,
    How frustrating for you - having to wait that long for the brace you need must be miserable.
    Don't know if this helps but the NHS is supposed to let us poor patients get a choice in which hospital out GP refers us to:

    http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx
    (Sorry, it wouldn't let me do an actual link, just the address :roll:)

    So could you perhaps find a more accommodating one, especially as you say your local hospital offers poor service? Not always the answer I know, with travelling to a different hospital, not knowing the consultants and so on, but maybe worth some research?
    Hope you get sorted soon.
    Jeanniep
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    Hi Sarah
    Sorry I'm only answering this now but I think I said everything in answer to your pm
    You've had lots more advice from the others as well
    Take care pet.
    Love
    Hileena
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, thank you for asking after me. The arm is OK, I can feel the deep, dull ache of OA in it now and I have lost a small amount of movement - I should resume my exercises :wink: . The arthritis is rubbish but that's par for the course.

    The NHS is an under-resourced and over-stretched organisation, it is facing increasing demands on so many fronts and is over-burdened with admin. It is also one of the best things in my life. I wish I had an answer for you but I don't. :oops: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Sarah01
    Sarah01 Member Posts: 192
    edited 30. Nov -1, 00:00
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    Hi everyone,

    I rang the surgery and had an appointment for this afternoon to see the GP, however, I got a call from the head of the orthotics department at my local hospital. PALS had sent her the email I wrote last night. I was very impressed at the speed with which she replied, I certainly wasn't expecting an answer today. I think it might have had something to do with the content of the email I sent. Firm but to the point and also laying blame with the original A&E consultant who I saw after the fall 18 months ago.

    Firstly she was very apologetic at the way everything had been handled. She explained that the new contract for orthotics had been amended and it was decided by all the local GPs that a patient could not be referred from another consultant regardless of the fact that the hospital was the patient's local one. She would speak to my surgeon's secretary and get back to me.

    I cancelled the GP as it was pointless going to see him as he would not expedite the appointment. The lady called me back and informed me that my surgeon's secretary had decided to also refer me to the previous orthopaedic consultant who I first saw when I was diagnosed with OA, in the hope that I may get in for a knee brace sooner rather than later. She also told me to keep the referral to the other hospital and whichever came first I should take. The only other option she gave me is to pay for it to be done privately.

    So although it has been 17 weeks since the start of the knee problem, there is absolutely nothing I can do but wait for an appointment sometime in the next 10-12 weeks. Still feeling deflated about it all, but alas there is nothing I can do. I intend to look into the cost of having it done privately should the need arise.

    Thank you everyone for your support and I shall endeavour to keep you informed of the progress.

    DD - glad to see the arm is OK but sorry to hear that you have a lost a small amount of movement.

    Jeanniep - I did mention about changing hospital but they told me that I could wait even longer and it would not be worth it :(

    Sarah x
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Oh Sarah , I am sorry to read this, what on earth do you have to do to get a priority appointment.....pay I suppose :roll: no wounder you are feeling deflated, I really do hope they ring you sooner..wish I could help more but you know were I am xx
    Love
    Barbara
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    Well, I don't know about you, Sarah, but I'm completely lost here :? It seems as if everyone's doing their best but nothing's happening. It just seems bizarre. I hope you get the nos sooner rather than later.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Sarah01
    Sarah01 Member Posts: 192
    edited 30. Nov -1, 00:00
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    Hi Barbara

    Thanks for the message of support :) I‘m keeping fingers crossed that one of the hospitals will get in touch soon. In the meantime I will keep myself busy with work and physio.

    Hope you are keeping well :)

    Sarah x
  • Sarah01
    Sarah01 Member Posts: 192
    edited 30. Nov -1, 00:00
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    You and me both SW :?

    It does seem that everyone is trying to help, but still getting nowhere and having to wait. Hopefully something will come through the post soon :)

    Sarah x
  • Sarah01
    Sarah01 Member Posts: 192
    edited 30. Nov -1, 00:00
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    Further update,

    Got home today to find a letter from the hospital in my surgeon's area. I have my appointment for the knee brace, 15th August is the earliest date they could give me.

    Sarah x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hmmm, that's a stretch away, could you request to be contacted should they have any cancellations? I've done this in the past and have sometimes been surprised but the speed of the 'phone call! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    Sarah, I've read and re-read your thread and I can only conclude (And, forgive me, you may have said something about this in a previous post) that the problem arose because your op was done by a surgeon not in your 'area'. Does this mean not part of your NHS Trust?

    If so, surely he should have organised your knee brace at his own hospital ie where you had the op. I'm fairly sure that would be normal procedure. I can see that the local hospitals might have a point in not allowing orthotic referrals from elsewhere to jump the queue as it were but surely the fault lies squarely with the surgeon and / or his secretary and one or other of them should expedite the brace at his hospital?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Sarah01
    Sarah01 Member Posts: 192
    edited 30. Nov -1, 00:00
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    Thanks DD, l never thought of that. I'll give them a ring tomorrow :)
  • Sarah01
    Sarah01 Member Posts: 192
    edited 30. Nov -1, 00:00
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    Hi SW

    My op was done by the surgeon in the other area because my local hospital didn't have a surgeon who specialised in FAI and OA. My local trust funded the surgery as it was done at a private hospital and it was cheaper for them to contract it out so to speak.

    My surgeon wanted the knee brace done where I live because he thought it would be easier for me and saved me having to drive a 100 mile round trip. The other reason was because the hospital where I had the op done, don't have the type of brace I need.

    As far as I know the surgeon's secretary is trying to expedite the appointment. It's just a matter of waiting to see if anything happens.

    Sarah x
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    What a mess, isn't it? I still think the surgeon should have finished what he started. It also seems ridiculous that the hospital in which he works doesn't have the equipment to deal with the aftermath of the ops carried out there. Can anyone advise you as to what you can do while you wait eg would an ordinary knee brace help or hinder?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Sarah01
    Sarah01 Member Posts: 192
    edited 30. Nov -1, 00:00
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    DD - rang the orthotics department and they don't do standby or waiting lists. Have to keep the appointment I was given and there is nothing they can do :x

    SW - I have a neoprene knee brace that I bought on the surgeon's advice a few months back whilst waiting for the MRI. It helps with support which is great but as the surgeon said, "it does nothing for the pain". Stuck between a rock and a hard place at the moment.

    Sarah x