Why wait for six years?: Just had phone consultation... - NRAS

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Why wait for six years?

Green230461
Green230461

Just had phone consultation for RA. Having waited six months I was quite excited as I have been having real problems with my knee. I was told yesterday that baricitinib was working but I would need a knee replacement because of RA wear and tear. Then I was told that as a replacement only lasted for ten years I would have to wait until l am 65 for this- six years away! My mobility is very poor already and I use a stick. Practice nurse told me to contact my GP for strong painkillers. Surely this can’t be right? He tried to blame COVID-19 for this? Any thoughts good people?

78 Replies
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Oh no that’s awful.

It has been reported in the press that there is a major backlog of people waiting for hip and knee replacements. But six years.?! That is shocking.

I will end up a junky on very strong pain killers I think!

Crazy! So upsetting. Any chance of a referral elsewhere or go private? I can’t afford private myself but my sister goes private sometimes.

Maybe they got OA and RA requirements for replacement mixed up, unlikely though... I know people much younger than 65 who got both knees replaced but before Covid-19 threat.

MJSlide1958
MJSlide1958 in reply to charisma

Join Benenden and you will be able to use after six months because the NHS can't do the op quick enough and you are in great pain. You should be able to have the op done through Benenden Hospital (they assist when NHS can't treat). Have a look on the Benenden Membership website and have a good read!

Thank you for this. I thought that private med care could not do existing problems. I will definitely take a look 👀

Benenden Membership is not like the usual private care. Benenden is non-profit organisation which used to be only for Civil Servants and Post Office workers. Now for anyone. It costs about £11 per month and they assist the NHS when NHS cannot do treatment on time. At moment if you are waiting longer than 4 weeks with great pain then you can enquire with Benenden after GP referral. But you will need to be a member of Benenden for 6 months firstly. Good luck

Thank you for this information I will take a 👀 look at it.

Have a good weekend

Sounds really good to me!

Saw the advert on tv this evening! Typical- never heard of Benenden before👍 Now twice in one day.

Thanks again.

No problem. Have a good weekend too.

No I don't think it's right to stick someone on pain killers for 6 years when knee replacement would solve the problem. I think that because of the growing list of people waiting for operations and diagnostic tests etc the NHS will try to put off adding more people to it if they can. My husband needs a broncosopy urgently and got an appointment for the end of November 😮 and he can hardly breathe. It's terrible.

springcross
springcross in reply to Biofreak

That's disgusting!

Biofreak
Biofreak in reply to springcross

I know springcross. I have been on the phone this morning and asked for it to be brought forward. Said they would try! He is supposed to be having a phone consultation with the respiratory doctor on Tuesday 27/10 and an oxygen assessment on 29/10. Can't come quick enough.

springcross
springcross in reply to Biofreak

Maybe the respiratory doctor can bring the appointment forward for his broncoscopy 🤞

Biofreak
Biofreak in reply to springcross

That's my hope.

Green230461
Green230461 in reply to Biofreak

I hope that your husband gets the help he needs. You do not realise what a blessing the nhs is until things start to snarl up. Good luck to you both 🍀

Sorry to hear this Bio. Too long to wait for that. We can often patch ourselves up if we have to for a while for our joints and it isn’t good to do so, but for the lungs you don’t want to be waiting and struggling to breathe. Hope somehow your hubby is seen sooner. x

Oh my goodness Biofreak! This is disgusting! I am so sorry to hear how your husband as just been left hardly able to breathe! 😡. I really do hope that the oxygen assessment pushes things along much quicker. x

Thanks Summerr.ain. Next week can't come quick enough! 😘

🤗🤗

Pippy25
Pippy25 in reply to Biofreak

I am so sorry to hear this Biofreak.

Biofreak
Biofreak in reply to Pippy25

Thanks Pip. Support from NRAS Healthunlocked members has been amazing. So grateful.xx

Pippy25
Pippy25 in reply to Biofreak

You both take care and keep us posted xx

Biofreak
Biofreak in reply to Pippy25

Will do Pip xx

Thanks. It's been and still is a nightmare. What makes me really angry is that on a Granada program the other night there was a piece on long Covid syndrome and there was a man with a backpack which had an oxygen cylinder in it to help him with his breathing difficulties after having Covid19. My husband has been waiting since July for an oxygen assessment and his appointment is only at the end of next week. Covid 19 seems to be a passport for preferential treatment. Don't get me wrong I know the guy who had Covid needs it but so does my husband and he has been ill for 18 months and serious breathing difficulties since July. There are probably thousands of people with non Covid related conditions out there waiting for appointments that are just not coming. You hear very little about that on TV just an odd mention every now and then and then BACK to COVID19. Sorry ranting again. Will stop now.

You aren’t ranting at all .. it’s what you’re living with and it’s not good for your hubby or you to have to wait and to see him struggling. x

That’s okay! The air was every shade of blue here when I got off the phone! I spend my days hobbling to and from the kitchen and toilet thinking “Isthis it” at 59? My husband says he would not put up with it but what can you do? I really think if it is not covid they don’t want you. That is why my appointment was a phone call too many covid cases in the hospital and they were protecting me on immune suppressants how can they see a swollen knee and hobbly woman by phone?

So frustrating!!!

Biofreak
Biofreak in reply to Green230461

Very frustrating indeed. X

Hi Green, sorry you are suffering. 💗 Can you send an image of your knee to them on an email attachment or use an iPhone etc to show them next time on a FaceTime call? I understand you well as I need a steroid shot in my knee and am curtailed re my mobility somewhat but it isn’t urgent but it’s not going to do me any good at all to wait as it’s a year since I last had one, but the hospital won’t do them at the moment. So I’m pressing down hard on a walking stick to get support and Then spraining everything on that side re beck and arm etc when I’m using the stick! It all has a knock on effect doesn’t it?! Anyhow I’m going to sit it out for a while but my nurse is aware but I don’t want oral steroids. Ask if you can show them a photo of your knee. If it’s there in front of them they might do more. x

Followed your advice sent photos of knees to compare👍

Glad to hear you’ve done that. I was told when I was 40 I’d to wait for replacements (still haven’t had them age 60! .. that’s my choice) but I think that if you’re in immense pain and the joint is compromised to render you with immobility/restriction of movement, then it’s time to have an op if you are ready in yourself and your mind to do so. I think different rheumys would have different opinions. Good luck with the Baricitinib .. sounds like it’s working for you, and hope you hear something from your rheumy team re your knee.

Thank you for your help 😃

I’m so sorry that you’re being forced to wait , especially as you’re in so much pain . Why do they say that replacements only last 10 years , I’ve had both mine replaced , one done 24 years ago , the other about 19 , and others have reported on here in the past with replacements that have been in longer than mine .

Surely it’s best to do it now before anymore damage is done to your knee and possibly making it harder for the surgeon to do a TKR .

I sincerely hope that you can get it done sooner . Take care .

Green230461
Green230461 in reply to Cherie22

Thank you for your help. After hearing everyone here I am definitely taking it further. ☀️

Cherie22
Cherie22 in reply to Green230461

You’re welcome . I hope that they will listen to you , it’s ridiculous that they expect you to wait so long . I had my first replacement , hips , done when I was 36 years old , then my first knee at 38 , all my replacements are still doing their job very well , I’m in my early 60’s now . In total I’ve had 5 replacements , so they can do them when you’re younger .

I wish you well and I hope you can get your operation done ASAP . Take care .

Hidden
Hidden

It's called fobbing you off! It's appalling. I would fight that if I were you. They tried the same with me, but my quality of life was so awful I kicked up polite, but forthright hoo-ha. It's a rubbish state of affairs and just makes recovery worse. And folks end up addicted on pain killers!

I hope you don't have to wait that long

I'm so sorry to hear this and sadly to say here is your twin. I don't know if you have read my posts but my knee is a mess and this has been going on for years. I have reached the stage whereby each morning I have to skirt around the furniture like a child learning to walk and the pain is dreadful. I am 55 and have been messed about by consultants no end saying it's one thing and not listening to myself or reports from others. Covid is not an excuse and sadly to say some have been using it as a smoke screen to delay things. Hips and knee prior to Covid were already getting significant delays on waiting lists. So I am sorry but I don't have any suggestions as to how you can raise or take this further I wanted to let you know that I hear you and share your dilemma and hope that you will be able to get someone to take this forward for you and in the meantime that you can get some relief with the pain. Take care x

Thank you Pippy25. I try not to moan too much but some days it just does not make sense. Together we would make a terrific three legged team 💐

Pippy25
Pippy25 in reply to Green230461

It makes no sense and moan away as much as you like, we all need to let it out. As for a three legged team don't let on to the consultants as that will be the next solution they have to our situations!! :-)

Green230461
Green230461 in reply to Pippy25

Role on the Olympics 🌞

Pippy25
Pippy25 in reply to Green230461

Oh yes the Green Pip team are on the way! :-)

Hi it is beyond a joke now .surely you would thing they might look at case to case basis maybe

Keep at them

This cure is now causing more damage than good now with this viris

It is tsunami levels now

Green230461
Green230461 in reply to Ajay575

Thank you 😊

I think if they replace too early they have to do it again so they try to hold off as long as possible (within reason) so you get longer out it.

Also knees are a major op with higher risk of complications than hips so if you can manage for a while with medication you would be better off waiting.

Hope it works out.

Thank you. I was not aware it was more complicated than hips. Guess I should carry on hobbling. 🌞

I had to read your post several times hearing that your are being asked to wait at least six years before they may consider a knee replacement! What on Earth are these people thinking and saying. It is not patient care at all them accepting you need a knee replacement but then telling you that the solution you need you can’t have for years! To expect you to live daily with such pain and loss of mobility is not right at all! Words fail me right now. Well they don’t but they are not polite what I am thinking about the advice you have been given today. I had a friend who needed a hip replacement but did to them only be in the 40’s they were told that they are too young. They couldn’t walk or weight bear and no quality of life. Thankfully their physio really pushed for the hip replacement and it did finally happen. Just wondering if a referral to physio may help with some much needed support to push for your knee replacement!

Pippy25
Pippy25 in reply to Summerrain14

Something has to give as all they are doing is creating longer waiting lists or keeping people off the lists by fobbing them off. In the last week or so my knee has swelled up more....yet I got a call yesterday to say the leg brace they ordered has arrived early much to their surprise and will I go to the hospital next week. I hope it will still fit from when they measured me how many weeks ago now as my knee is bigger than before. The last thing I want is for the thing not to fit, cause me any more problems and end up immobile just like my mum because she was told she was 'too young', 'too ill' and then 'too old'. Opportunities were missed even back then years ago to put things right and it sometimes feels like a repetition of the same for me. So I really hope Green can get the help and support needed...and soon.

Green230461
Green230461 in reply to Pippy25

I hope that your leg brace gives you some relief. You do not realise how vital your knees are until they begin to play up!

Pippy25
Pippy25 in reply to Green230461

Thank you Green, you take care too.

Thank you. I have not been offered physio just told to contact my doctor for painkillers. He says he won’t prescribe because I am under the consultant and they should prescribe some! I should ask for physio 🤔help.

Sorry you have been told this. I don't know how much of it is to do with your postcode. A friend of mine has been told 1 year wait. Maybe if you tell them you are happy to go anywhere to have it done you might get it done much sooner. I am just assuming. I might be completely wrong. Of course we are in strange times and there will be many people in your situation, hence the long waiting lists. I hope you can get some relief soon. I do know it is thousands of pounds to have it done privately.

Green230461
Green230461 in reply to Sheila_G

Thank you 😊

I'm sorry you have been told this. I always ask if I can have what I perceive to be poor judgements in writing, often this simple request opens up a new line of discussion with better treatment options.

It might be worth contacting the department asking for a copy of the GP letter stating you are required to wait 6 years 'for your own records'.

Green230461
Green230461 in reply to Mmrr

That is good advice. Thank you for that. Things in writing do make a difference 🌈

Oh no, that's too long. I would explain the effects your knee is having on your well being and quality of life.

Been told the same. I'm 40...

There are going to be a lot of hobbly people around this country!

Hi. Can’t understand why they won’t put you on a waiting list, if your knee needs replacing then they should be putting the wheels in motion.

I have had RA for 36 years and had a knee replacement at the age of 61 and was told if I didn’t get it done sooner rather than later the damage would be much worse and I would need even more invasive surgery, neither was I told that it would only last for 10 years. Maybe you need to go back to to the GP and insist on seeing another consultant. Sending you gentle hugs.

Green230461
Green230461 in reply to Lematt

Thank you! Was your op successful?

Lematt
Lematt in reply to Green230461

Hi. Yes, had my op almost three years ago and it is so much better, although I still have a little swelling. My knee had collapsed to one side and is now straight.

Hope you get some answers soon. X

Green230461
Green230461 in reply to Lematt

Thank you 😊

I was given a similar response 4 years ago, when my diagnosis was osteoarthritis in knee. I was 45 and told if I was 65 they'd suggest knee replacement but at that moment, not an option. Too young cos they only last 10-15 years and younger patients wear through them quicker as they are more active. So Limp on! Lots of co-codamol/naproxen kept me going but I was very down and as it turns out I was ill with undiagnosed RA. DMARDS have made a massive difference for me, but Rheumatologist referred me back to the surgeons to 'discuss options'. Completely different story - yes, if things were bad they would consider TKR and of course it could be done before 65. As it happens DMARDS have made a massive difference and I rarely need pain relief now. The knock on effect is that I'm able to do much more exercise to strengthen my weakened leg muscles which supports the crappy knee joint further. So TKR now off the table for much more positive reasons. Seek a second opinion!

Green230461
Green230461 in reply to Squidlet

What a difference! I do not believe that they understand how much we all rely on their words of wisdom. Thanks for some light at the end of a very dark tunnel.

Reading through this thread and from personal experience it must be said that the NHS is letting us down now. A friend of mine spent 2 weeks in Derby Royal hospital recently and no diagnosis! He has been discharged and told to go to another hospital for a PET scan. No appointment was fixed so his wife had to call and make an appointment for him at the second hospital. Nottingham hospital very friendly and arranged a scan the following week. Hopefully this gets done before Nottingham goes into tier 3.

I have a problem with large red blood cells and had a telephone “consultation” with my doctor. Bearing in mind that there are a few things that could be causing this the Doctor first asked if I drank and when I told him that I did he said that that was the problem! When I told him that it helps me sleep and that I also had panic attacks earlier this year he prescribed metazapine, sorry if incorrect spelling! Read about the drug here and not going to start taking it due to the fact that I don’t believe it’s the way forward.

Have you any other issues which would indicate that a knee replacement might not be suitable at the moment ? As I'm surprised that any nurse would say something so strange, could she have said they have a waiting list of 6 years ? I've read some comments on here about the NHS letting us down which I think is actually a bit offensive to the very hard working medical staff who are working under very difficult and unique circumstances.

The medical team might just be exhausted, and overworked yet turn up every day to do a job that in these days I'd not want yet my sister does it and so does my son. I just think until this crisis is behind us there's going to be a lot put off because they have to prioritise things. I'm not going to say anymore because sometimes we just have to see the bigger picture in these difficult times.

My niece is a very hard working nurse in Glasgow AandE. Doing extra “covid”shifts to help out. I do not blame them at all it must be so frightening to work in unbearable circumstances with no end in sight.

Agghhh! These sort of things make me feel so angry. We are constantly being lectured about how important it is that we stay fit and healthy but how are we supposed to do that if you can’t get the medical care you need in order to be able to stay mobile?!

I like Mmr’s suggestion of asking for the decision and rationale in writing. It might make things a bit clearer and allow you to consider whether you would wish to seek a second opinion?

Take care xx

Thank you- yes I think it is a very sensible way forward. 🌟

I had total knee replacements on both knees when I was 60 that was 10 yrs ago and they are still doing ok. Also about same time had it hips replaced and they also good. I'd try and push for treatment xl

It sounds as though knee replacements work very well once you get them which is reassuring.

Thank you all for your sound advice and support 🌹

Hi Green

I'm really sorry to read about your experience. It must have been very frustrating. Was this consultation with your Rheumatologis? If so, you would think it would be a decision for an orthopaedic surgeon? Would there be any chance of you being referred to an orthopaedic surgeon for a "proper" surgical opinion?

Like others, I'm always a bit wary of the motives if people are told they're "too young." I have had joints replaced, and have never been told this. I had both hips replaced in 1988, not long after turning 19. (I developed RA/JIA at 14). I was just told it hadto be done. One of the hips was revised in 2016 and the other is amazingly, still hanging on nearly 33 years later! It is very worn now, and I am on the waiting list for a revision in case it fails suddenly like the other one did, but it's still going at present! I was told though that revisions are more tricky and the hip revision was definitely harder work for me than the original replacement. My surgeon also said that the outcome with revisions is much more difficult to predict, and they can't say how long they will last.

In addition, I also had both knees replaced in 2005 when I was 36. Fifteen years later they are both still fine. I was also told knee replacements are more complicated than hips, and revisions even more so. I managed to put off the knee replacements by having repeated arthroscopies and regular steroid injections. Not ideal, but none of our options are, are they?! Eventually they couldn't be left any longer as they were end stage 4 and very unstable.

Over the years, I've also been offered shoulder, elbow and knuckle replacements, but am trying to stick it out as long as I possibly can. I've had many ops due to the RA and know I've got others ahead so I try to "ration" them until I can't stand it any longer.

Apologies, as I've wittered on and I'm not entirely sure if it's useful for you or not!

I suppose I would say if you are not happy with the "age" excuse given to you (and that's completely understandable), then do try and get an initial surgical opinion, or indeed a second opinion if that doctor was a surgeon. I don't know if it would be useful if they could tell you what stage of damage (1-4) your knee is at, so you can gauge how worn it is? You could also see if there are any intermediate options like steroid injections that may keep you going a bit longer. If not, and you really feel it's time for surgery (and I think you do know when you are ready), then try to keep pestering until you get somewhere. If you are as fortunate as I've been and were to get at least 15 years life out of a replacement for example, then that would take you into your 70's. I can't help but think it's not unreasonable for you to want that chance to find out sooner rather than later.🙂

Good luck with it all. x

Green230461
Green230461 in reply to Kags1068

My goodness you are so brave having all that work done! You are like a female Wolverine similar to the comic hero. I am sure my knee pain pales into insignificance compared to you!

Thank you for your advice re osteo support. I have contacted the hospital again after all these great responses and have been offered a steroid injection in my knee in a couple of weeks time. So it does need a nudge sometimes.Are the levels 1-4 the same in all hospitals? Is 4 the best or the worst needing a quick delivery?

Thanks once again Kags. 💐

Kags1068
Kags1068 in reply to Green230461

Thanks so much for your very kind comments. Undeserved, but much appreciated! I quite like the idea of being a female wolverine ....... my nails usually grow well, and I'm sure I could probably sprout some decent sideburns with the help of the steroids and Cyclosporin- haha!😆😆

As for your knee pain, I'm sure it must be bad, as I don't think we start to think about ops unless it is.

I'm delighted you've been back in touch with the hosp and offered a steroid injection. That's really great news and I hope it gives you some relief. Eventually I had them in my knees every 3 months, and they really did help me to keep them going a bit longer.

Regarding the stages 1-4 for joint damage, 1 is the lower end of the damage scale and 4 is "eek, your leg is about to fall off!" Only joking, but I'm sure you get what I mean.😄 As far as I'm aware, this is a standardised way of measuring joint damage across orthopaedic clinics.

So, good luck with the injections and do keep us posted. 😊🤞

Green230461
Green230461 in reply to Kags1068

Thank you once again. Steroid injection first week in December so some progress😃

Kags1068
Kags1068 in reply to Green230461

You are very welcome and roll on injection time! I really hope it gives you some relief. 😊🤞

I am 49 and a few weeks ago was put on the waiting list for 2 new knees, so age shouldn’t be an issue. You have been given some really good advice above which I won’t repeat but I would add that physio is so important, so I would certainly urge your rheumatologist to refer you. I have already received pre op exercises to do (I have no date and the orthopaedic surgeon had no idea how long I would need to wait), so these exercises are an essential part of the replacement, and almost exactly the same as the physios have been giving me to manage the pain and keep mobile. Best of luck with it, take care.

Green230461
Green230461 in reply to BeeKind

Physio has been mentioned by many on this site. I am going to try and get some for my knee as doing no walking apart from lounge to toilet is not good for my weight !

Thank you for your kind advice. 🌺

I saw the orthopaedic consultant last Monday and he has put me on the urgent list for a full knee replacement and I am 55. Really does seem to depend on each consultant and also hospital protocol. Hope you manage to get something sorted. Xx

Good luck with your op! Hope it goes well for you. 💐

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