History: I've had RA since childhood affecting all joints, most of which are severely damaged and either have had, or need orthopedic surgery.
Left elbow is locking up into a painful position, cannot bend it properly which reduces ability to do every day things like hold cutlery, wash hair, drive etc. Googled it and 'Golfer's Elbow' symptoms seemed to be pretty accurate. However, it has needed a new joint for some years.
I haven't been 'seen' in Rheumatology since September 2019 and Orthopedics since 2021. On top, our GP practice closed and was taken over by a locum company for 12 months. I asked to be 'seen' by a GP and they ordered an x-ray of my elbow. The radiographer had to improvise as I couldn't put my elbow into the positions she wanted as it's so damaged and bent. I was expecting the GP to contact me to say what the next steps would be, but instead they marked it as 'satisfactory - no further action'! What?! Ok so it's not broken or fractured but that's not the end of it.
I messaged GP to ask for a referral to orthopedics but instead they have referred me to a MSK Triage which I have not come across before. Is this something new, or just another layer of bureaucracy to delay getting an appointment. In addition, I messaged Rheumatology to ask for an appointment, last time they said I was 'urgent' but that was months ago and nothing happens. Two days have passed and no reply from Rheumatology. I'm beginning to think Addenbrookes Rheumatology Department has closed, anyone else having difficulties getting 'seen' there?
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BoneyC
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I think these days they try to use all options or resources available first to try and resolve the issue without giving us proper appointments with the correct specialists for our conditions. I had to endure 6 months of MSK visits and exercises following a leg injury before they finally sent me for a scan which proved me right. It’s the waste that irks me. Earlier this year I felt ill, lost 16 pounds in 3 weeks without S&D and had some bloods done, locum GP telephones and says possible cancer, tests follow and meds but no face to face appointment. I do feel a physical exam should have been done before throwing in the C word. Gastroscopy and colonoscopy revealed nothing , it’s my chronic RD I say, rubbish said another locum in the phone….
That's awful, they should have considered how throwing in the 'C' word might affect your mental health, how irresponsible of them.
If they think I'm going to endure 6 months of MSK messing around then they can think again! If money is tight in the NHS they should cut down on this type of wastage.
I think your rant (which really was remarkably restrained) is very justified.
I've seen responses you've previously made where you've briefly mentioned your age of onset/duration of disease, etc. I hope it's OK to say this, but I've inferred from just those details that your disease has probably been pretty gruelling, and especially as you've had many ops and lots of damage, that you are at the severe end of the RA spectrum.
As such, I find it even more shocking and disheartening that you seem to have been effectively abandoned.
Your GP surgery seems incompetent at best. I've heard tales from other's locally, whose GP's have been taken over by private locum companies, and it's generally very poor. (That's if they can even get through on the phone). I cannot believe your x-ray was marked as 'satisfactory.' In what respect could it be satisfactory?! Are you by any chance under different ortho's for different bits - ie. Upper limb, lower limb, etc? I'm probably being overly optimistic, but I was wondering if you have a named "elbow" surgeon whose secretary you could contact? (Sorry, you've probably been doing this for years)! I dread to think what an MSK triage is, but I expect it won't involve seeing a doctor! I do think some of these steps are added hurdles to try and weed people out. This kind of thing does seem to be happening more. One of the orthopaedic surgeon's I see often has a "specialist" nurse working in his clinic. I dread seeing them as I know it's usually pointless. Last time I went, it was several months after I'd broken my femur, it wasn't healing and I was in a wheelchair in a lot of pain. She asked why was I there? When I started to explain about the femur she said, "what makes you think you've had a broken femur?" in a very snotty tone. I answered "the big metal plate I've now got down my leg for starters." She then looked at the x-ray and shouted out "oh my god, what has happened here? I'm so sorry." If only she'd looked first instead of disbelieving me!! Anyway that was a digression. All I can say is I think it's a waste of time someone like you being referred through such a pointless pathway.
As for your rheumatology dept, again, what on earth are they doing? As I said already, I would've thought (hoped) they would be keeping a regular (if not close) eye on someone with advanced disease. As the years go on, various complications can arise from severe longstanding RA, (as well you know), so the fact that you've dropped off the grid is very worrying. Again, I'm sure you've tried this, but if you have a specific rheumatology consultant, is it worth speaking direct with their secretary (if possible)? I've always been told to contact the secretaries, and I always have. I never use the nurse helpline if I can avoid it, as to put it politely, the ones at my local hospital are not what you would call dynamic in any way. I apologise as you probably have been doing all these things, and apart from keep ringing back (which none of us wants to do, but sometimes we feel we have no other option), I can't think of much else, unless you go down the PALS route, which may at this point be overkill (or not)?
I hope you get somewhere. I can't help but feel very annoyed and frustrated on your behalf. Best wishes
Thanks for your reply. I don't think any of the doctors read notes anymore. Why on earth the x-ray was marked as 'satisfactory' may be down to the fact he was looking at it late at night - almost 11pm. I've noticed my latest blood results he added at 4.40am - he's either an insomniac or cramming as much paperwork in as he can morning & evening which can't be good for patients if he's making these sorts of judgements.
I have a friend who works in a private hospital doing administrative work, she told me it is now common practice not to read notes in advance and to let the patient lead by giving details if symptoms. No allowance is made for Brain fog, pain, exhaustion or stress caused by our conditions that may make it harder for us to impart full information during rushed 5 minute appointments! SHOCKING TREATMENT!
casts a whole new light on those people who say ‘I don’t think my doctor had even read my notes’ doesn’t it. Could well be that they haven’t. Trouble is explaining all of your symptoms, history etc could use all of your consultation time 😱
Bit of a delayed response, so apologies for that! I hope you have perhaps made some progress (or is that wishful thinking)?
I totally agree about doctors not reading notes anymore. I've been to a few different departments (as we do), and I haven't seen my notes for at least 2 years! I go in, and at best the doc has a piece of blank hospital notepaper that if you're lucky, gets written on and added to the notes at some point. (Obviously, I don't know if this has been happening as the notes have gone AWOL)! Otherwise, they try and ferret around on the computer for any random past clinic letter they can find - which is not ideal. By the time they've found one, you've lost the will to live!!
Your x-ray being marked satisfactory is just ridiculous. Satisfactory compared to what? Your arm hanging off?! As you say, the times of day (night) this and your blood test results were added does not inspire confidence. It does make it look as though someone is just doing things as quickly as possible and not necessarily making the best judgements.
I can't help but think it's completely wrong (and pointless) that you are seemingly being treated as a 'new' referral when you are already under the care of orthopaedic surgeons. Is it the GP Surgery who has been doing the referring? If you could get to see a rheumy, (I know🙄), do you think they might refer you directly? Thankfully, the rheumy I'm under does has done that every time so far. If they're in his hospital he will sometimes even just phone them or, shock horror, go and have a word with them in person! Who knew they can actually speak to each other in person!!😉😄
There was a public meeting about the new GP arrangement last week. I emailed the Patient Participation Group and the Integrated Care System beforehand. The PPG forwarded my email to the Practice Manager at the Surgery and she messaged me to say give her a few days to investigate .... 7 days later, no news.
Ok so my case was not life threatening, but had the same GP marked abnormal blood results as 'satisfactory' someone's life could have been put at risk. It does draw into question his clinical judgement and I wonder if the GP will be 'moved on' as the group he works for will have vicarious liability for his actions.
The other issue, not getting seen by a Rheumatlogist for 4 years is ongoing. No reply to my message on 'My Chart', wonder what it's there for if they ignore it.
Nope, they are still there! I also last saw them in person in September 2019. I got an email recently telling me they were having a meeting re: remote consultations or something to that effect. Did I want to wait for a face to face consultation or did I want to complete the attached questionnaire and my case would be looks at in a couple of weeks time?
I couldn’t fit myself into the questions so I wrote out how I was etc and after the meeting I got a reply to say they would put me in for a face to face at some point in the future but I was reminded that they are very busy.
I was interested when you mentioned MSK triage because I met up with someone recently who has been referred to one of those clinics and then as I read on surprise surprise it was Addenbrooke’s - that’s where my friend is going!
I wonder if your arm had been hanging off would it have been satisfactory too. It may be satisfactory for them but certainly not for you. Hopefully MSK Triage will be better but like you I suspect it is probably just another layer to keep patients thinking they are being dealt with.
As for your GP surgery - mine was in a similar state a couple of years ago when I landed on my bottom with great force. Was in complete agony and when I eventually got to speak to a doctor and ask if I could have an X-ray she hemmed and hawed and said at my age it was probably just a touch of osteoarthritis! As my husband had been fobbed off too and kept being told his sickness was a reaction to his covid vaccine - it wasn’t and he spent ten days on a drip in Addenbrooke’s i changed to another surgery in town. It’s actually very easy - you just ask for a new patient pack, fill it in and return it and hey presto! You have a new and in our case a more caring surgery.
Good luck with rheumatology - I hope you get somewhere very soon because you certainly sound as if you need to be seen.
Problem is I'm in a village and to move GP would involve driving to another village or town. There's a meeting with the local health authority and the PPG this week, apparently the locums want to stay on! Crikey, I'm not sure if that's a good thing or a bad thing.
I googled Addenbrookes MSK Triage and it might be at Chesterton Medical Centre, or the old Chesterton Workhouse, but I'll have to wait up to 4 weeks before I chase it.
First off I’m sorry this is happening to you, I’m really concerned about the way things are going at Addenbrookes, a major hospital and yet the things you hear about people’s treatment or non treatment is shocking. I have been seen in RA Clinic last October but only because my GP pushed hard for me to be seen. Sadly you haven’t even got them to fight for you. I had hoped the locum practice was going to allay all patients worries but it seems not and that it’s just enough to stop people being up in arms about the closure. My practice has been using MSK triage too and I was seen before being referred for physio. I can see it’d be useful for some people but it’s just another step added in getting to see someone who might be able to help. Sadly we have to fight and keep fighting but I know how wearing that can be, especially when you are in pain.
On a happier note I self referred to physio after an A&E visit recently and was seen within a few weeks ( not at Addenbrookes but PoW) so something is working ok although a cardiac monitor appointment has been put off again so it’s one step forward in places then back in others. I do hope you have the energy to fight to get the NHS service you are entitled to and get some relief soon. With the amount of houses being built around here I can’t see General practice getting better but hope a long term solution comes for your practice and gets rid of the uncertainty. 🤗
I had the x ray at POW and was encouraged to hear the alterations near the main entrance are to stand an MRI and CT scanner lorries. That might speed up appointments for those.
I've never been that impressed with Addenbrookes Rheumatology since the main man retired in about 2007. There's no consistency and they don't even do basic health checks as they did years ago. I haven't been there since Rheumatology left Clinic 5 to wherever it is now. Parking isn't easy, all of the various blue badge places have either been built on or mobile units/work vans parked there. The Deakin Centre car park was useful but that's gone now.
I live in Staffordshire (Midlands) so can’t help you regards experience of Addenbrooks, however I’m a retired HR Manager and we used the abbreviation MSK on absence records for Musculoskeletal injuries. In short it was a very broad terminology for injuries to joints, muscle and bone. Maybe this is the same reference being used for your referral ?
My local experience of RA hospital support is very good but last week at a consultant review I asked how frequent my reviews are scheduled. I was told every 6 months .. but he acknowledged that it’s at least 10 months since I last saw anyone. I was originally diagnosed with sero positive RA 4years ago.
The entire NHS is still struggling but (rightly or wrongly) the ones who shout loudest usually get seen first from my experience. I know it’s exhausting but keep onto them until you get what you need. Good luck with getting the support you do so obviously need. 🤞🥰
MSK referral service is standard now, you should be reviewed and while you are waiting for whatever surgery option is decided offered physio. I would also ask for acupuncture pain relief too as I did while waiting to get my should done.
I would compose a short, polite urgent complaint email of the event timeline from now back to 2019. With a clear outcome of what you need ie an urgent face to face appt and treatment plan with Rheumatology and send it to PALS at the hospitals, your GP practise manager, the Rheumy dept and the Ortho. Dept.Hopefully you will get the response i did which was an appt in a month. Good luck. Make sure you include your hospital and NHS number.
Boney C could do all that and copy in her MP. I’ve heard involving them mostly gets some sort of action - it also involves someone outside ‘the system’
I would second what GD23 says, a letter to PALs. Copying in the other departments may also wake them up.
The new ICBs are responsible for providing GP services. They need to know about the problems in these locum practices because otherwise after a year they may award the contract to them!
And did you know you have the right to see your x-ray results? I now routinely request the results straight away (there should be something on your trust's website on how to request this) and nearly ever time there is more to the report that comes with the x-rays than the clinician says. I found one report recommended a second x-ray from a different angle as there was something not right and they weren't sure what it was. Rheumy said all was fine, I just had fibro. A formal complaint against him lead to a second opinion which removed fibro and included PsA and OA. Hence I always request my x-ray results and blood test result myself.
Good luck, I hope going to PALs wakes them all up!
There is marked joint space narrowing with marginal osteophyte formation and subarticular sclerosis in keeping with severe OA.
Chronic remodelling of the radial head is noted.'
Hardly 'satisfactory' at all and, given I have been consulting an upper limb ortho surgeon since 1998 (yes 25 years) but no had surgery yet ought to have been a clue, but as discussed above, they don't read notes.
It's as if I am a new RA and/or Ortho surgery patient with no previous medical history at Addenbrookes when in reality I have decades of it.
Our Patient Participation Group (PPG) and Cambridgeshire & Peterborough Integrated Care Board (ICB) are holding a public meeting on Teams tomorrow evening and in person on Wednesday during the day, to discuss the future of our GP Service in the village. I shall attend both to gauge other patients' opinions, then draft my letter to them, PALS, Rheumatology, Orthopedics, & GP Practice Manager. Steve Barclay, the Health Secretary is currently our MP until they move the constituency boundaries then it's Lucy Fraser. He's already heard from me about the GP closure but it wouldn't hurt to keep him on his toes!
Go You! I hope the meetings go well. Sometimes at these meetings many people who thought they were alone suddenly find out that there are loads of patients experiencing the same problems.
And yes, that is hardly a 'satisfactory' imaging report.
Muscular Skeletal team MSK have to assess then action 😡. Poor you. You aren’t alone….not that that helps. I had to pay to see my RA consultant as dont get to see him now only a nurse by phone 😭 .
Can I suggest please that you contact our helpline and ask them if you can speak to me. I've had severe RA for 43 years and both my elbows (along with a lot of other joints) have been replaced. I would be happy to speak to you and make some recommendations as to what you can/should do.
Ailsa Bosworth, (I'm NRAS Founder and their National Patient Champion)
I too have had a very successful elbow replacement. But it wasn't until I saw a different rheumatologist , who asked why something hadn't been done sooner about my bent arm with large subchondral cyst , that anything happened.
Sorry BoneyC. It really makes my blood boil. They really do try every tactic to divert you away from NHS treatment. It really has to be bad before I contact anyone these days but nobody wants to see you. Everything is being privatised and I for one think it’s disgraceful. xx
I agree, it's ok when things are going along reasonably well, but the expectation is the NHS will be there when you need it. Covid is more or less out of the way, things need to speed up a bit.
It seems that 'no further action' is a popular response to the imaging showed nothing. Rather than saying OK it's not what we thought but we still want to get to the bottom of it, patients are dismissed and have to start the process again in the hope that a different GP will take another approach.
In recent years it seems that in most areas in England GPs have to refer to MSK rather than directly to an orthopaedic surgeon. Sometimes that is actually a good thing in that patients who actually need physiotherapy rather than orthopaedic surgery actually get to start their physiotherapy earlier than if they had to join the waiting list to see an orthopaedic surgeon, only to find that the latter says they need physiotherapy. MSK triage will be able to refer you appropriately to the correct person, which from your symptoms and X-ray, sounds as if it would be an upper limb orthopaedic surgeon. Your rheumatologist however would have been able to refer you directly to an orthopaedic consultant and perhaps if you had been reviewed earlier by them , your elbow arthritis may not have progressed to this advanced stage.
The thing is I already have upper limb and lower limb ortho surgeons who I've consulted for 25 years and 15 years respectively. I know these two surgeons are still working at the same hospital. Among my notes will be lots of x-rays showing severe RA/OA and need for surgery which I have put off until now.
My previous rheumatologist, who is now retired, always took a conservative approach and never ever mentioned surgery. It's difficult to know whether that was the right thing but maybe he didn't want to put me at risk of revision surgery too young as well as infection risk.
Following my original post, the GP Practice Manager emailed back on 29th June saying:-
'I am (name) Practice Manager at (surgery). I am sorry to hear of the service you have received outlined below.
I would like to investigate this further and then come back to you if that is ok? I predict this may take a few working days.'
That was 29th June, more than a 'few' working days have passed.
On Saturday, the MSK Triage Service sent a letter saying:-
'... having considered the clinical information available to us it has been decided that it would be best for you to be referred to Addenbrookes Orthopaedics.
We are unable to make the appointment, so that you do not wait any longer than necessary we have forwarded your details through the Electronic Referral Service to the hospital, they should contact you to make an appointment.
We do not know how long it will be until your appointment, you will be contacted by the hospital when they are in a position to update you.'
So, now waiting for an orthopaedic appointment which could have been requested when I first consulted the GP on 23rd May, had they listened and read my notes, rather than wasting time and resources sending me for an x-ray at a smaller hospital that does not link computers with Addenbrookes and for RA Factor blood test.
yes gp have to go to msk first, but the ra dept can refer you directly to ortho dept.
you could go to A&E about the elbow and they might be able to refer you to ortho or at least get the RA dept to refer to ortho. ooh and place a complaint on the hospital pals dept using email or letter. that should prompt something. also read up on the NICE GUIDELINES for your treatment and if the hospital are not keeping to NICE guidelines point it out to the RA secretarys and PALS dept. you have to keep chasing these people by whatever means necessary sometimes. it should not have to be like this.
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See, I knew I was right. It's RA flare not OA!
Does this look like RA or OA? (Pics)
?RA
Ra sufferer
