Hello

GrandmaT
GrandmaT Member Posts: 13
edited 10. Mar 2021, 12:18 in Living with arthritis

I have reached the age when I am classified as 'old' by the NHS and I feel totally frustrated by the current situation. I have had osteoarthritis for years and managed it well. I was referred to rheumatology in early 2020 and finally received and appointment 2 weeks ago. This was converted into a brief phone call saying 'We know you are suffering but we need to see you and you will get a letter soon'. Are others tired of waiting and waiting in the hope of being able to see a doctor or a consultant who can help? I do my best to be active and know how important it is to keep moving but am exhausted with the effort. My sense of humour is wearing thin at the moment as the prospect of improvement fades! Sorry to moan! I am all too aware that I am not alone with this situation, but the positive person I used to be just a few months ago is fast losing hope!

Comments

  • PeterJ
    PeterJ Administrator Posts: 883

    Hello @GrandmaT and welcome to the forum.

    I understand that you have had osteoarthritis for some years and that you are frustrated by having to wait. Hopefully you will get your letter soon and things will start happening.

    We have a lot of useful information on our website and I suggest you have a look around it, a couple of areas you may find useful are:

    Do keep in touch and let us know how you get on, and hopefully others will join your chat and share their experiences as well, you will no doubt find others as frustrated by waiting as yourself.

    Best wishes and Take Care

    Peter (mod)

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Jona
    Jona Member Posts: 406

    Hi GrandmaT

    Nice to see you here, can I ask how old you are I’m sorry for being personal, I too have had to wait and wait for appts to various depts and it is sooo frustrating there have been so many times I’ve wanted to scream not only with the daily pain I’m in but the way I’ve been perceived as a person mostly depressed or anxious you could phone the dept and ask them to add you to their cancellation list say you are available anytime also you could ask for a referral to pain management you can do that through your gp

    It is important that you try to stay active but when your restricted with pain it’s very hard to motivate but your in the right place here I’m sure there will be lots of advice from other members

    Stay strong and we’re not old just full of wisdom 😊

    love Jona

  • GrandmaT
    GrandmaT Member Posts: 13

    Thank you for being so supportive! I am 82, and today I feel 100 +. I haven't spoken to my GP for months about arthritis because I can't get a call with the doctor who referred me. It seems that patients are expected to be happy to speak to anyone, even a medical student! Or maybe he is avoiding me!

    The last time I spoke to my GP he started to go down the route of 'maybe you should consider that your stress is in the mind and is causing pain!' I almost exploded! I told him, in no uncertain terms, that if my pain was imagined or due to anxiety, I had wasted many years of studying Psychology. Not that I am an expert, but I just wanted to make the point that most patients have a good understanding of their own symptoms. I told him that, if I could bottle the pain and fatigue and he had to take the medicine 4 times a day he might accept that it isn't in my mind!

    I know I am a complex case and don't follow the usual pattern, and I realise doctors have 10 minutes to assess, but I shouldn't have felt the need to be so forthright.

    All my life I have lived with other family members who experienced rheumatoid and osteo and were disabled by it. I have the greatest respect for anyone who has to live with this. My mother used to say it was torture because it made you suffer but didn't kill you. From the comments I have read there are so many of you who fight this and stay positive. I am full of admiration!

  • Jona
    Jona Member Posts: 406

    GrandmaT

    I am absolutely in awe of you everything your saying is so right I spoke to a physio this morning again I got the wear and tear so he asked about the pain saying he’s not concerned so I asked him if that was from his experience or his perspective as until you experience this really don’t dismiss it as

    At 82 you should say to yourself everyday I am an amazing person and I’m a survivor I must say I am fast losing the respect for some medical professionals that seem to assume we should accept arthritis as a state of age but we still deserve a good quality of life

    Anyway bravo you you certainly have my respect I call my hot water bottle warty coz he’s forever stuck to me 😊

    take care and sending a huge hug

    love Jona 💐

  • GrandmaT
    GrandmaT Member Posts: 13

    Hi, Jona, I have just seen your 'I love westies' tag and thats amazing! We have more in common as I love all dogs and am a volunteer at a rescue centre. (At least I hope I will be able to continue to do a bit when they open again.) I sort, price, and prepare jewellery donations for sale. I have been volunteering for 25 years doing all kinds of jobs and it is such an important part of my life I would be heartbroken if this wretched condition stops me. I have had rescue dogs, since I retired, usually jack russells or cairns but my last one died in may last year and I decided that it wouldnt be fair to take another. Instead I borrow my daughters crazy Parsons Jack Russell.

    Big hugs and woofs.

    Marie

  • Jona
    Jona Member Posts: 406

    Your doing an amazing job too I admire you for that, I lost my little girl last year broke my heart we used to potter about the pair of us and cuddle in bed she would wake me up in the morning with a gentle touch and then bark at me every night at 5 don’t know how she knew but she did for her tea time and walk she decided when and where but oh my goodness I miss her so much nothing phased her she was such a love I took her with me wherever I went.

    I hope this condition doesn’t stop you Marie they need you and I hope when this covid is over they don’t abandon them, I do love westies though they’re a knowing little dog I used to love it when she got back from the beauty parlour with her little bow she soon got rid of it though typical tomboy.

    love Jona

  • Lilymary
    Lilymary Member Posts: 1,740

    Hello @GrandmaT , never mind your doc avoiding you, I think you should avoid him! What a clot he is! Is there someone else in the practice you can try? I've actually found some of the new arrivals are very good, ok, they don’t have as many”patient hours” under the belt, but they’ve come out of training full of the latest practices and new attitudes (ie, they’re not quite so wedded to pain being ‘all in the mind”). A couple of them have been godsends in the past, and I was sorry when they moved on. I think they’re even more supportive of older people when they realise how active you are, so make sure they’re aware of that.

    I do get how frustrating and depressing the waiting times are. I was diagnosed 12 months ago with OA and told I needed a new hip. I’ve now been to,d it will be another 12-18 months, and meanwhile I’m becoming more and more useless and seeing bits of my life slipping away from me. (I’m still working, self employed, so my income is slipping away too). I have been in contact with mynsurgeon’s secretary, and she said they still have no idea when they can start surgery again, even though it’s a non-Covid hospital, due to reallocation of staff and theatre time, and the sheer effort involved in keeping the hospital ultra sterile, which makes every consultation take so much longer. As they said in that classic film, “Airplane”, “I picked a bad week to stop sniffing glue”, or in our case, “we picked a bad time to need the NHS”. Try to find pleasure in small things to take your mind off the pain and keep your spirits up. See if you can borrow your daughter’s JR for a while! Every little helps,

  • GrandmaT
    GrandmaT Member Posts: 13

    THank you Jona and Lilymary! I so agree that its a bad time to be needing NHS! I am really struggling to cope with pain today and just to punish myself further I have tried to clean the bathroom. It took me nearly 2 hours of doing a bit and sitting down!

    The good news is that I have a face to face appointment next week with a consultant but I'm not raising my expectations as I am unsure what will happen and where it will lead. Any advice would be very welcome as I want to make sure I don't come away feeling that I didn't say something important.