My mum has been waiting over a year for an operation, is there anyone else dealing with the same thing?

Arthritis U.K. have good support for people in your mum’s situation, if you haven’t already been in touch with them: [https://www.arthritis-uk.org/information-and-support/support-and-resources/online-community/](https://www.arthritis-uk.org/information-and-support/support-and-resources/online-community/)

OP, sending you a DM with a support line your mum can try calling. So sorry to hear of her situation. I’ve typed my experiences below. - TWO YEARS FOR AN OPERATION I REALLY NEEDED. I suffered so needlessly and ended up going to A&E several times and even having an overnight hospital stay once when things escalated. One year of that was actually waiting to get on the surgical waiting list, so once I was on it they only ever counted it down from 56 weeks. This further added to the hurt as after that they always treated me like I hadn’t been waiting for very long when I already had a year under my belt. But 7 months of that waiting to get on the waiting list was down to waiting for one scan. I tried to get it privately but no one would return my calls to confirm they’d accept the private scan. Despite trying to call various people for months! So I couldn’t even speed things up by offering to pay £1.5k for the scan. Cue more suffering. At one point I complained to PALS and they came back and apologised because they couldn’t get hold of anyone for me either. In fact, they couldn’t even locate the office the medical secretary worked in to ask them in person on my behalf. They at least acknowledged how ridiculous it was. Kafka-esque nightmare. There is no help for you while waiting, and no mental support to manage waiting for a very long, but unknown period of time. This would help a lot of people manage their mental health during this time. Staff lied about waiting times at every stage of the process. Said a scan would take 10 weeks when it took 7 months. After around a year they finally had me in for pre-surgery obs. Could have told me then the waiting list for the actual surgery was still 56 weeks away!!! Another year!! Why don’t they tell patients the current length of the waiting list? Some staff, like the surgeon’s secretary, were so unpleasant on the phone I would cry when talking to them. They would berate me for calling, when I hadn’t called for an update in 3 months and just wanted to know a rough expectation of when something would happen - especially after another trip to A&E while waiting. Had every single staff member not hidden the truth from me, I wouldn’t have needed to call and ask in the first place!! So please don’t treat me like I’m the annoying piece of shit. I deserve to know the truth about my own situation. Now we move into a new calendar year, and after not hearing anything for another 3-4 months, I tried calling for an update. After calling the medical secretary and surgical waiting list team, none of the numbers worked. I got more numbers to try from the hospital switchboard. None of those worked either. Either numbers with answerphone messages saying it was an unused number or no one would ever call me back. Every time a friend or acquaintance asked if I had my surgery yet, and fed me the ‘Why don’t you try calling someone for an update?’ - I would feel more suicidal because I was trying so hard and other people seemed to think you could actually call and someone would answer! When I told people that simply wasn’t possible they looked at me like I was crazy or wasn’t helping myself enough. Finally I complained to PALS again, asking why no one would give me any information after 6 months on the waiting list, and a year to get on the waiting list. So 18 months in total. They were ace and for the first time I had a timeframe!!! Another 6 months wait but at least someone told me!! - Had the operation done after 25 months of waiting. I don’t hate the NHS - it’s underfunded. But I do hate the people who lied to me and were not very nice when I was only asking a simple question to get a sense of the timeframes. When the operation did happen, I don’t think they gave me enough information to prepare for it. So a lot of the side effects were very difficult to manage and live with during recovery. Presumably staff deliberately fob people off. I get that they can’t tell people precisely in case it’s wrong etc. then people complain anyway. But if they had told me things like ‘we’ve had you in for pre-surgery tests but the surgery is still around a year away’, I could have made different choices like fundraised for surgery to do it privately. (Cost 12.5k) So yeah, mental health is in pieces from lies, persistant lack of help, and stonewalling. Worst was the fear - not even knowing at times if I was still on the waiting list after 18 months of waiting. Was terrified they’d be an error and I’d have to do it all over again. Financially - Over 10k in lost income when my condition prevented me working. Had to live in a more expensive area closer to hospital to stay in the catchment area while waiting for surgery. But I was lucky. At least I could keep working unlike your mum OP who has now sadly lost her job. Unsurprisingly I’m now off work due to mental health problems and am receiving counselling!