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Still waiting

(63 Posts)
maddyone Mon 03-Feb-25 11:37:05

So here I am, at home, still in pain, and with no idea when I’m going in hospital for my surgery. It has been cancelled for the third time, leaving me feeling depressed and upset.

I’m due to have spinal surgery, a replacement disc at c5 c6 in my neck. It’s taken me a long time to get here. I had pain, slowly increasing for two years before I consulted my rather unsympathetic GP. If I’d known how long it would take to get here, or how serious my pain was, maybe I’d have gone sooner, but the pain wasn’t too bad, and I don’t like going to the doctor, so I ignored it until I could ignore it no longer. Then followed a further year of tests and meetings with various people in the NHS before a consultant said I should have a diagnostic MRI. Following that, I had my diagnosis.

I finally saw a spinal consultant a year ago. Initially he recommended a steroid injection into my neck, which did nothing. Then he said I need a disc replacement as the disc is crumbling and damaged (why bother with a steroid injection because that was never going to heal the disc) and it would be three to four months wait for the surgery. That was eight months ago. On Friday last week, my surgery was cancelled for the third time. My pain has increased considerably over the last few weeks, I’m in permanent pain, and I’m feeling extremely depressed and upset about it all. I understand that the hospital’s IT was taken down a week ago in the storms and so they’re rearranging some surgeries, but this is my third rearrangement. I have no idea when my next date for surgery will be, and I’m in considerable pain.

I’m just sad and fed up.

Claremont Tue 04-Feb-25 11:47:46

annodomini

On the basis of 'it's not what you know but who you know', in a similar situation, I emailed all the members of the trust's board some of whom I did know, to tell them what the waiting list administrator had done. I was then re-instated close to the top of the list. Would you consider writing to your MP to put them in the picture? Leave no stone unturned!

I am so glad it worked for you. I'd do the same- but it just shouldn't be that way, should it. Many elderly do NOT know the 'right' people to contact, and they slip down the list, further and further.

Allira Tue 04-Feb-25 11:48:53

I wondered why you were still posting yesterday, maddyone

How annoying and upsetting, just when you are all psychologically geared up to go in.

You should be top of the list surely? Can you contact the scheduling clerks and emphasise just how much pain you are in and how it is affecting you physically and mentally too?

Fingers crossed you hear soon.

Allira Tue 04-Feb-25 11:51:47

What I took from that discussion is that I will be waiting for some more weeks.
No, no and no.

Those scheduled for the morning should have priority. Perhaps they will have to work one weekend to accommodate those patients.

nanna8 Tue 04-Feb-25 12:40:16

I don’t know what to say maddyone except to pray that they just hurry up for you and maybe have some cancellations so you can be seen quickly.

Jaxjacky Tue 04-Feb-25 12:46:29

You have my sympathy maddyone chronic pain is debilitating both mentally and physically, I really hope you hear soon.

creakingandchronic Tue 04-Feb-25 13:53:35

so awful for you all i can offer is a gentle hug hope you are on a cancellation list so you can get in asap

Cateq Tue 04-Feb-25 14:28:51

Madrone, I’m so sorry you’re in such pain and feeling disappointed that your surgery has been cancelled again. I was the same waited over 2 years to have my right hip replaced and still waiting to even hear when the left hip will be done. Long term pain affects every aspect of your life. Hope you get positive news soon

albertina Tue 04-Feb-25 16:45:35

I hope you get your surgery soon and you have a speedy recovery.

Romola Tue 04-Feb-25 16:50:27

Your story is truly shocking, Maddyone.
If you can summon up the energy to be a real nuisance to the admin person in the relevant surgical department, ring them EVERY day and say how much pain you're in. Be polite, of course. They will probably sound irritated but will want you off their back and would agitate for you with the surgical team. I hope.

pipdog Tue 04-Feb-25 19:12:39

Maddyone, have you told them that you will take a short notice cancelation? Both myself and my husband did this when waiting for surgery and it worked for both of us. My hysterectomy got cancelled the night before the planned surgery but got a cancelation appointment 3 weeks later. In my husbands case they offered him a slot for the 23rd December but said if he hadn't said about a cancelation appointment they wouldn't have offered one so close to Christmas as most people turn them down.

Jannipans Tue 04-Feb-25 19:52:07

Have you complained to PALS. They do have some pull.

Madmeg Tue 04-Feb-25 22:21:15

Last October when my dentist detected a change in the skin inside my mouth I was put on the urgent pathway to see a cancer specialist within two weeks. 8 weeks later I was still waiting so paid privately to see a consultant and have scans (which confirmed oral cancer). Suddenly I got a call from the NHS hospital to say they had put on extra weekend clinics and I got an appointment the next weekend. I am told that lots of consultants are agreeing to this, so hope it happens that way for you.

maddyone Tue 04-Feb-25 23:41:04

A big thank you to all who have so kindly responded. When this all began, and we were floundering around without a diagnosis, and being sent from pillar to post (physiotherapy, X-ray, conductivity tests, and others) my husband and I decided maybe it would help to go privately. We quickly discovered that the private hospitals wanted a diagnosis before they would see me, and so we carried on down the NHS route. When I finally got a diagnosis I was offered treatment at the private hospital which has a renowned spinal unit, or at the spinal unit in the big general hospital in Southampton (not my local hospital but reasonably near.) I chose the private hospital at Salisbury, which is an hour’s journey from our home because I was told it would be quicker there, and because I knew it was a very good hospital. I went there as an NHS patient.

When I was finally recommended surgery I was told it would be 3/4 months wait, and so as it was a private hospital, I enquired if the surgery could be done there privately to speed things up. I was advised that it would still take 3/4 months if I went privately because I’d have start again with a new surgeon. My surgeon is an extremely well qualified spinal surgeon, having worked in many hospitals, and been involved in research and teaching, both here and in America. He only works for the NHS and does no private work. Since the waiting time would apparently be the same, whether I changed surgeon or not, I decided to stick with the surgeon I already had. Of course, I couldn’t foresee that four months wait would turn into eight months. I certainly wouldn’t want to change now either, because I’m sure that would lengthen the wait.

I’ve decided to ring the hospital regularly as advised by some posters, because I think that will give me the best chance to not be ‘forgotten’ and get the surgery I need at the earliest opportunity. I understand that there’s nothing the hospital could do about a lightening strike, and that all surgeries were cancelled last week, and this week on Monday morning, whether they were private or NHS. I do worry that private patients may get more access to the theatre than NHS patients, which if true, could push me further down the list, although as my surgeon only does NHS surgery, surely he will need additional access to the theatre too if he is to clear his backlog.

I’m really fed up, but would be less so if I had a date for my surgery. I feel in limbo without a date. It’s unsettling.

Thank you again for your kind responses. I appreciate them.

MissAdventure Tue 04-Feb-25 23:59:20

At least you'll feel you're doing something by phoning, and you just never know.

I was told I had been wrongly referred to a surgical list, so needed to start the whole process again, from the beginning.

Then was told it was a year's wait, but I felt I was dying, and genuinely wouldn't have lasted that long.

One day, I made a call, and happened to get through to someone who was leaving the NHS, and was working her notice.

I tole her I was desperate; not to just "push in" but that I felt so, so ill.

She threw caution to the wind, moved me up the waiting list, and when I was seen, I was told I needed a liver transplant.

Homestead62 Wed 05-Feb-25 09:57:57

I don't really know what to say to you apart from I'm sorry you are going through this. I've had a rant on another thread re NHS. I just wish there was a politician somewhere who would grow a pair and tackle the problem. Sadly, I think the days of free treatment are over. So many people spend a fortune on vets fees, but ask them to pay for their own health? They go crazy and I don't think it helps that the NHS and individuals within it appear to be deified. Every profession or service has good and bad and I've had both.

MaggsMcG Wed 05-Feb-25 10:02:21

Not every one has access to funds to go private. All they keep doing with my daughter is sending her to Pain Management who send her away as she's on the highest does of pain killers they can safely give her that still allows her to work.

MissAdventure Wed 05-Feb-25 10:03:57

I've actually been slowly, slowly getting better, so for now don't need anything but monitoring.

I'm less than half the person I was before getting ill though, because it must have been getting worse and worse before.

Aveline Wed 05-Feb-25 10:49:30

Sorry to hear you've had such a bad time MissAdventure. I hope you keep improving!

MissAdventure Wed 05-Feb-25 10:53:08

Thank you. smile

Allira Wed 05-Feb-25 11:26:38

MissAdventure

I've actually been slowly, slowly getting better, so for now don't need anything but monitoring.

I'm less than half the person I was before getting ill though, because it must have been getting worse and worse before.

I'm glad you're starting to feel better MissAdventure.
Sometimes recovery is slow but be kind to yourself and I hope you'll be feeling much better soon.

Allira Wed 05-Feb-25 11:32:04

maddyone Sometimes the private sector is just as inefficient as we've found lately. Perhaps it's because we have a limited private insurance but the process has been slow and very difficult to negotiate, being pushed from pillar to post too.

We went to down that route because we weren't happy with the waiting list after DH was seen by an NHS surgeon. It's not easy negotiating the private system either, there's a real lack of communication.

NonGrannyMoll Wed 05-Feb-25 11:41:11

So sorry for you, maddyone, constant pain is really draining.
Hope things will fall into place soon, but also hope you have people to help with everyday life while you wait.

Tizliz Wed 05-Feb-25 11:50:43

I have noticed that the pain in my back gets worse when I’m depressed so it is a shame that you can’t socialise as that would help with the depression. Hopefully you are getting some sunshine with your walks as that helps. Wishing you all the best.

FriedGreenTomatoes2 Wed 05-Feb-25 11:58:25

SueDonim

That’s terrible, I’m so sorry. flowers I’d call the medical secretary every week, to find out the latest, and also hope that by reminding them you’re still there, you’ll get seen soon.

Fwiw, a friend has been waiting 18mths for two new knees and she’s now thinking of raiding her piggy bank to pay privately to have at least one done, to make her life more tolerable. It’s a shocking state of affairs.

SueDonim someone we know paid for two new knees 18 months ago. Cost = £35,000.
😮
Good job (touch wood) I don’t need a TKR.

FriedGreenTomatoes2 Wed 05-Feb-25 12:01:35

Delighted to hear you are making progress to better physical health MissA as you are one of my favourite posters. You have a wry sense of humour, you make me smile and your posts are succinct and straight to the point (something I’m working on). Long tracts can be tiresome to read. 😁