Off Topic: Elbow Surgery Waiting List

[BoneyC]

I've been on the surgery waiting list as a P3 (should be 3 months but backlogs) for 21 weeks (since 12th December) for my left elbow replacement and listed for the right elbow since 9th January.

I've had no contact from the hospital, but I have checked the NHS app every few weeks which was stating May/June for left elbow and a month later for the right. I have screenshot this in case I need to use it.

I telephoned the List Coordinator (details on surgeon's letter to GP dated 12th December 2023) only to be told after 21 weeks of waiting that I have another 4 or 5 months to wait! I couldn't believe it, I asked her to check, there must be some mistake, as I am listed as a P3 and the NHS app has been stating May/June. I said I would ask GP to expedite matters.

Booked GP telephone appointment for 15th May, nothing else available.

I was so cross, that I contacted two private hospitals by online forms, where I know the surgeon works and asked for quotations, not that I want to pay privately, but I am in so much pain and agony that I am desperate. I hope he will get to hear this and do something on the NHS! He's known me for 20 years and it used to be 'just phone my secretary and you can go on the list' - not any more!

Then I thought, either the listing coordinator has got it wrong and given me incorrect information, or the NHS app has been giving incorrect information all year. It must be one of these, so I telephoned PALS and left a message asking who completes the information on the NHS app. To belt and brace it, I also emailed PALS asking for the same information. Not expecting a swift response, but hopefully they will come back to me at some point.

I telephoned NRAS and spoke to a lady there who suggested I contact the surgeon's secretary which I did, but again there were hitches. The telephone number provided on the surgeon's letter did not allow messaging! I then used the secretary's email, from the same letter, but an email came back 'I have now left the hospital'. I then, as a final resort, emailed the same message to another generic email address taken from the surgeon's letter.

The thought I have another 4-5 months wait is uncomprehensible, and to think the NHS app has been giving me false hope for 5 months is not acceptable. Once I know where the problem lies, I will be taking this further.

Grrrrr!

[Amnesiac3637]

Sounds like you’re not just bashing your head against a brick wall but rather being attacked by a cliff! How mad is all that? And how utterly frustrating!

I would go right to the top - letter, not email, to the chief exec explaining what you’ve just told us. In the words of a famous corporal ‘they don’t like it up ‘em’ and you usually get a pretty fast response as all the Trusts are monitored and examined for poor patient service these days. Give it a go, nothing to lose and best of luck with getting your pain under control.

[BoneyC in reply to Amnesiac3637]

I'll calm down a bit before I write, but thanks for reading.

PALS phoned back. It is NHS England who put the information on the NHS phone app and, it is this information that is incorrect as they are stating 'normal' waiting times, which is a not much use these days when in reality it turns out waiting times are double that. 'Normal' waiting times haven't been 'normal' for some years now. I was so cross yesterday that I filled in a complaint form online to Healthwatch, not that they can do much about it, but it made me feel slightly better to let off steam!

I've also received one quotation for private elbow replacement - up to £15,000! I knew it would be in that region, but then they want a consultation first, at least £280 plus diagnostic imaging ..... more like another £1,000 on top of the £15,000!

It's just ridiculous when it would be the same surgeon that's known me for 20 years and all the diagnostics have been done on the NHS already, just more exposure to radiation! It's all such a mess.

I asked PALS why the waiting lists were so long and not going down. She said its because there are so many patients needing something doing and a shortage of doctors. There are plans for two new hospitals to be built in the coming years on the same site, where on earth are those doctors going to be found?

[Alderess in reply to BoneyC]

I hope you get sorted soon. I have been waiting nearly 4 years for my left elbow clean out. It turns out I was only put on the list after the third urgent referral and in spite of having pre-op done last September I was told in January to stop asking because they’ll do another pre-op once they have a date. It is depressing to be in urgent need of an op and in so much pain. You have my sympathy

[BoneyC in reply to Alderess]

That's appalling! Four years is ridiculous, you'll need an arthroscopy by the time you get called. Has your GP been of any help? Can they write to expedite things?

I've just been reading on NHS England, with a view to complaining about the misleading waiting times, giving false hope, on their NHS app.

I came across 'My Planned Care'. Apparently it gives information and support whilst waiting for surgery and the site is updated weekly. Checked out my hospital and it states 24 week wait on average for orthopedic surgery. That's more or less what the NHS app has been saying all year but it can't be right, or the listing coordinator has told me wrong, as she added another 4-5 months to my 21 weeks!

As far as I'm concerned I've received no 'planned care' or 'waiting well' at all. It sounds like you haven't either. Hope you get some help soon.

[Alderess in reply to BoneyC]

Thank you. It is an arthroscopy plus synovectomy I’m waiting for. The right one was done in 2016 because it was the worst. They said in September that the left one is now much worse than the right one was (surprise?!) I shall push again soon, I just want to be able to use my arms….

[dickfend]

Good morning Boney I don’t wish to upset you further and I know it must vary from Trust Area to Trust Area but I have an existing total elbow replacement that has broken through the Humerus (for the second time in four years) and awaiting surgery. I experienced this trauma back in April 2023 and have been waiting as a P2 patient ever since. I have in the last two weeks had my pre operation assessment but still no operation date. I have chased and been told that waiting is in the order of 60 - 70 weeks so I am hoping that I haven’t got too long to wait now. Unfortunately this is the state of the NHS at the moment. I do wish you the best of luck.

[BoneyC in reply to dickfend]

Crikey! Is your arm painful? Mine is excrutiating, I can't do anything.

What you've been told sounds wrong, 60-70 weeks. The surgeon said about a year's wait to me last December, then I said really, that long and he said I'll list you as a P3 and, if they are right I have another 4-5 months to wait, that would still be sooner than your P2. It doesn't make any sense. Are they putting you off as it's complicated or something?

Edit - Think we are having same surgeon, same hospital. If so, the new Movement Hub has 40 orthopedic beds and should be easing the waiting lists.

What on earth is going on? Is the surgeon taking 6 months leave or doing more private operations than NHS? There is another upper limb surgeon available there, or is everyone asking for the 'TV star'?

[dickfend]

thank you for your reply. This is the second time this has happened and yes it is painful. However I have to wear a split splint which I can take off to shower. I have been told that P1 people are emergencies that come in from serious accidents. My situation is that the top rod that goes up inside of the Humerus has become loose and broken through the bone. It means I made need a bone graft in addition of a new joint. The surgeon I have is extremely experienced and has done this replacement for me before. I hope I don’t have to wait too much longer. Although there is a lot of people in the same position also waiting for surgery.

[katieoxo60]

Sounds like you have migrated to the none urgent list which is all wrong. I would contact your Gp for a further referral to hospital due to elbow being more painful . Your reply from Pals is correct and even cancer referals are taking longer than two weeks average at least a month or in my case it took 8 weeks to get a cancer CT then four weeks for Pet scan. The one before that took a month then it took a further month for biopsy confirmation. I am still waiting for biopsy confirmation for a further cancer found on Xray. Not bad considering they thought I was just depressed. So good luck my friend took 2 years to get her ankle fixed and another one as been waiting longer . But you do need to ask why or nothing happens, nag, nag ,nag is the way forward. Best wishes.

[BoneyC in reply to katieoxo60]

Oh goodness, you've been through it. It really isn't fair to keep patients waiting for cancer related appointments.

I managed to get a GP telephone appointment this morning and he was willing to write a letter asking to expedite my case, citing the worsening haemarthrosis and swelling.

According to him, within 2 weeks of the hospital receiving the letter, I should be bumped up the list by 2-3 months. Crikey, I hope he's right, but somehow I doubt much will change, but will hope for the best and expect the worst.

It's so tiring all of this chasing, we shouldn't have to do it.

Good luck!

[katieoxo60 in reply to BoneyC]

totally agree with you, but it just adds to the difficulties of being ill . Hope you do get bumped up the list and I am hoping after tomorrow we can move forward with treatment . But like you I don't feel very optimistic. Still we can only hope for the best.