Still waiting

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.

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

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.

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.

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

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

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

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

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.

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.

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.

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.

It's awful, feeling cast afloat, with no input, and worrying you'll slip through the net and off the radar.

It's easy to see how it happens, too, to vulnerable people.

I genuinely feel for you. I had my pre op last week for an op scheduled for March 12th, I haven't even written it on my calendar because I know it will be postponed. When I had my other side done it was cancelled three times and until I am actually on the table being wheeled into theatre I won't believe it is actually going ahead.

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 wish you had a sympathetic GP maddy, sometimes a nudge from them helps. It’s an awful situation to be in, if you can bear to it may be worth phoning weekly stressing increased pain levels and social isolation, there could just be a cancellation. Sending love and a hug.

I'm so sorry for the delay to your surgery Maddyone. Just hoping a cancellation comes up and it will be offered to you. The only consolation I can offer is that a family member had the same operation several years ago and it was totally successful. All the best for your surgery, when it happens.

Sorry maddyone I hope you can be fitted on a surgical list sooner than later 🌸

That is truly awful maddyone.

I hope your surgery is imminent.

I will pray for you, if that is ok.

So sorry to hear this - it’s not fair at all - it will all be sorted. I know there is a long waiting list for spinal surgery. I have first-hand knowledge.. Hope you won’t have to wait much longer. Let us know . In the meanwhile, here are sone

So sorry to hear you’re going through this. It really isn’t at all fair….💐💐

What a sad and sorry state the NHS is in ! So sorry maddy. Just awful having to wait and be in so much pain. My friend is in a similar predicament, she had a foot operation in September, and after months of following instructions to the letter, it sadly hasn’t worked, and she’s back to square one.
She, like you, is in a lot of pain and can barely walk. She has to go back on the list again. So frustrating. I really hope you get another appointment ASAP

I'm sorry to hear that your long-awaited operation still hasn't happened, maddyone. And that the delay is affecting your life in so many ways. I do hope it happens soon and that the pain disappears for good.

SueDonim

That’s terrible, I’m so sorry. 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.

I personally know six people in our village who have had to pay privately for hip or knee operations because they simply cannot bear the pain any longer.

The constant pain is so depressing, I know how you must be feeling, my DH had injections for pain in his shoulder that has been going on for many months, the injections didn't work so after a scan revealed bursitis and a frozen shoulder as well as an inpingement and OA he has now been referred but it could take 6 months or longer to see a specialist. He can't sleep for the pain, and the pain killers he was prescribed make him feel like a zombie and unable to drive so he stopped taking them.
My heart goes out to you. Is truly horrible being in pain like this and wondering when anyone is going to actually do something about it.
As others have said keep ringing to ask when your op will be.
Take care xx