I just don't know what to do

The last time I saw my rheumy nurse was October 19th. I told her that my foot was ery painful, not in the joints but underneath. She examined it and told me that the RA had damaged the soft tissue, causing my arch to drop and my foot to turn inwards. She said that she would refer me to see a podiatrist.

I patiently waited and waited and waited. When I hadn't received an appointment after 6 weeks (7th December) I tracked down the phone number for the central podiatry department and was told that no referral had been received or me. I rang the rheumy helpline ansaphone service, left them a message and a couple of days later to a reply saying a repeat referral had been made. Hurray I thought, bound to have an appointment date soon!

Well I heard nothing, so just after Christmas I repeated the process but this time I had to ring the helpline twice because no-one returned the call. Finally the rheumy nurse to back o me and said she would repeat the referral a third time and mark it urgent. Great I thought, that should get things moving.

I still hadn't heard anything, so today I rang the central podiatry department again and guess what? No referral has been received!! Of course I phoned the rheumy helpline again but I am still waiting for a response.

I feel lost in the NHS machine. I have been waiting in pain and with reduced mobility for 3 months and I don't know how to resolve this. To say I am fed up is an understatement!

14 Replies

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  • face-to-face seems to be the only way!

    I had the same issue with surgery I was waiting for on my right shoulder, after six months I had a scheduled appointment with my rumy nurse and basically begged her to ring while I was there and get an appointment date.that did the trick and now post surgery I'm onto it again regarding my left shoulder. I know it shouldn't have to be this way that sometimes needs must. Good luck

  • What is it about podiatry I wonder, as I had similar experience. Sadly I think you just have to keep nagging. Or you could try contacting PALS the patient liaison service at the hospital. P

  • Oh sweet heart I know what you mean. i am working and trying to make my boss understand NOT fun

    Just keep going someone will listen. Do you have help. If not do little and oftern when you feel like it

    Take care xxx

  • Hi Carol

    Really sorry you're being messed about - it happens quite a lot! I would just get in contact with PALS at your local hospital to be honest .I think you've given them enough time to sort this out.Could you have a chat with your GP? Maybe they would be able to refer you directly.

    Keep your chin up

    Take care

    Julie xx

  • Sorry you are having this trouble. My GP waited a month before the rheumy's letter reached him as these things are done electronically through the hospital's switchboard for confidentiality and it turned out that it was in a typing log jam - nothing to do with the rheumy or my GP but just a desperate shortage of secretarial staff.

    Also my hubby works in a care home for the elderly and says that there is a National shortage of podiatrists and it takes forever for people to get to see one here.

    Sorry not very helpful to you really but if I get to that stage with my feet then I would consider going private - but this may be a no no for you of course. We pay for opticians and dentistry these days so I guess feet are in the same boat? I really hope an appointment card arrives for you very soon.

    TTx

  • This is a tricky one - I agree there seems to be a national shortage of podiatrists, but can't say going private is necessarily the answer! I was in a similar situation a year ago as nothing (including two steroid injections into my ankle joint) helped at all! I thought my wait was bad though as I waited from beginning of Feb until end of April for an appointment. In the meantime, because I have BUPA through work I thought I'd try the private route, but found that there are very few podiatrists approved via BUPA!

    I then decided as I was so desperate that I would pay for an appointment myself. However I found the woman didn't want to really commit to any solution, particularly when she found out I was waiting for an NHS appointment! Simply told me what I knew in that my feet were stiff and painful, and suggested some very gentle exercises for them!

    I finally got to see the NHS podiatrist, and did find that appointment so much more worthwhile! She immediately identified the area of my foot that had problems,and made up some temporary insoles to see if they helped! They did help no end (and in fact since using them my foot has never got as bad as it was before that), but that's when I ran into further problems! I went back as suggested to get proper insoles made based on the temporary ones. That appointment was in July last year - she said it would take about 6 weeks to get the proper insoles to me! Well they arrived at the end of November, and are made in a completely different shape to the temporary ones (which I still use, although unfortauntely they are now worn down a bit too much!)! I just haven't had the time or inclination to try and get another appointment to get proper replacements that are made correctly! So bit of a waste after all that as I know the correct insoles will help, but will probably end up having to pay to get them made properly!

    Do perservere though as they can be very helpful, but just wish the whole system would work!

  • How absolutely appalling.

    When I have a problem with any of them, I go direct to the Consultant's Secretary and lay it on really thick! I usually get a good response. I also only leave it 2 weeks before I contact them again if I have not heard. Not that this info is any good to you now!!!

    Go to the highest authority you can - not to the minions.

    Good luck with it all.

  • Does your hospital have a patient representative. I know the hospital I worked for had a department staffed by former nurses who could liase between consultants, departments and patients to sort out problems. Most hospitals have something of the sort where you can complain. I would write a letter to them explaining what is happening. They should be able to make an appointment with podietry for you.

    Hope you get this sorted out soon, I know what it is like to have to constantly chase things up, you almost get to the stage of giving up but you must not.

    Jo x

  • Well today my rheumy nurse rang me. She is going to print the referral letter and take it with her to the hospital tomorrow. BUT when I questioned her it became clear that she doesn't actually know how the referral system works!! She is going to try and find out and will ring again tomorrow. I think the problem is that I live a long way from the main hospital in Oxford so I attend outpatients at my local hospital in Banbury. She only knows about the system in Oxford. So I am still not that confident that I will get the appointment. However I shall be more organised and follow it up in 2 weeks time. Thanks you all your advice. I will contact PALS. What a good idea to contact the consultant's secretary, I will try that and I am seeing my GP in early February so I'll bend his ear too.

    I just feel that my whole life is on hold. I'm always waiting and no-one cares. I want to buy shoes, book a holiday, go shopping and I can't do any of those things until my feet are sorted. I want my life back!

  • Interesting, I've been having similar issues for some time. Had problems with pains through the heels for months but recently it's been in the arch of the right foot and can be excruciating. I did buy a pair of new shoes recently and they seemed to help but I need to break them in since they were severely rubbing the backs of my heels. I'll have to give them another try since if it is the arch of the foot that's causing the pain, it would be nice to get something to ease it. I've mentioned the pains in the heels before now and did mention the arch pain at the consultants appointment last week, but he wasn't interested. I've got to go for my 2month rheumy nurse's appointment tomorrow so may bring it up again to see what they have to say about it. My feet are really the most painful part now, although I think their attitude is the excess weight is the problem and won't look at anything else. Really need to lose it but easier said than done.

  • Amazingly I got a call this afternoon, offering me an appointment on 10th February and apologising for the delay. Must be all your good wishes, kindness and sympathy! I can see some light at the end of the tunnel at last.

  • I got referrered to an nhs podiatrist and she was brilliant. My feet were put in plaster casts so they could mould the insoles. It took about 6 weeks and they don't fit in all my shoes but they are great. I was given the plaster casts so that I can take them back to get new ones when I need them. I also find FitFlops reaaly comfy even when my feet are really bad.

    Mary

  • Thanks Mary. Hopefully I'll be buying some new shoes after my appointment and I'll look,at the fitflops.

    Carole

  • Good luck with the appointment xx

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