Colposcopy waiting list- Scotland

I was first diagnosed with CIN 1/2 with high risk HPV in Janaury 2019. I was treated with LLETZ in May 2019 and at the six month follow up in November 2019 I was found to have CIN1 with High grade HPV. Since then I was on annual follow ups under colposcopy every November. In November 2020, I still had CIN 1 with high grade HPV. This wonderful service and treatment was all in England.

I recently moved to Scotland, where not only was new my GP not interested in referring me to Colposcopy. I had to contact my CNS in England to organise the referral. I have now received a letter from the service in Scotland saying I’m on a waiting list and likely to be followed up by telephone.

I cannot understand how this service was unaffected by COVID 19 in England, however in Scotland they are using it as an excuse.

Sadly there isn’t a contact number on the letter and I’m unsure how to proceed with this. Does anyone know of a charity or agency I could get in touch with?

Thank you

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Try contacting your local hospital directly. Explain the situation. Don’t get me wrong it’ll take quite a while phoning different no & being put through to different departments but it’s worth a shot. As for the waiting time in Scotland I was told there was a 30 week wait for a colposcopy. I let them know I would accept any cancellations & I was finally done on Thursday after 25 weeks.

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Michelle, I’m so sorry to here that. When I had my abnormal smear results in England I had my colposcopy within 4 week and my Lletz 4 weeks after that. This is awful service. It’s stressful enough, I can only imagine that waiting made your anxiety worse.

The only number on the hospital letter is appointment booking number and they cannot comment on how long the wait could be.

I have wrote to the trust’s complaint service and I’m currently drafting an letter to my local MP.

After hearing about your situation I’m tempted to ask the trust’s in Scotland for their average waiting times using FOI act and submitting this information to government.

You would think they would have improved their service after the scandal was relived this year.

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When the doc was doing the colposcopy he said the neck of my cervix look good but he noticed something higher up in my cervix & he offered me a loop procedure there & then. I accepted. He then went on to remove a clump of cervix about the size of a 10p piece which looked quite gnarly. This was a clinic that was fully booked & running late & he wanted to do the loop straight away which isn’t really filling me with confidence. Keep on at them , try to get through to health records. Good luck :pray:

Sorry to hear that so many of you are going through similar to what I’ve just gone through this year.

The long story short for me is: smear in November 2020 (this was already six months late due to Covid), results in January 2021 showed changes and HPV. I asked to be put on a cancellation list but heard nothing for months. Phoned several times after May and got told to stop worrying and go away as I only had “moderate” changes. Finally got a Saturday appointment with the clinic in July and my biopsy showed that actually I had CIN3 so not “moderate” at all. Had my procedure in late August. Got my results letter today and have been discharged back to my GP.

That’s nearly an entire year going through this and I’m sorry, telling me “it takes ages for changes to occur” was no comfort to me when I felt like I had something in my body that was attacking me. Also my all my previous (never missed) smears were clear so to go from nothing to CIN3 in three-four years IS frightening. I was scared and they wouldn’t even let me have my husband in the room with me.

I feel reluctant to criticise the NHS too much but I think it’s absolutely criminal how long they’re expecting women in the Greater Glasgow area (my health board) to wait and if this is being replicated across Scotland that’s even more shocking. I could just about accept the fact that most of the population stays near Glasgow but when you read this forum and see people in other parts of the UK who were called well after you getting seen within the 8 weeks…you can’t help being angry.

I tried complaining and got treated like I was a nuisance every step of the way. I’ve basically given up and dropped my complaint.

I’ll need a follow-up smear in early 2022 and if that comes back HPV positive I’m going private. I can’t be doing with going through this again. I feel like NHS GGC has basically stolen a year of my life causing me endless worrying and waiting.

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I’m Glasgow area also. Was told high risk hpv & abnormal changes in April & that I’d need a colposcopy. At first I was told it’d be a 24 week wait then they didn’t know how long I’d need to wait then it was a 30 week wait. I was even sent a couple of letters from NHS reminding me of how Covid has disrupted all services. Finally after 25 weeks which was on Thursday I got a call with a cancellation, I took it. Ended up with a loop procedure in which they removed something the size of a 10p piece. I feel & understand your frustration & angst. Take care :pray:

I’m so sorry to hear you’ve had similar experiences. It’s true, I don’t think the appreciate the anxiety having the diagnosis causes. I would spend hours on the internet researching papers, not sleeping, I even had an exam around that time and I couldn’t concentrate on revision.

I used to work for the NHS in England, so I feel I know how the system works. Scotland should be following the same national cervical screening guideline but I feel they have a massive backlog due to the scandal or they have refused to see women during covid. The latter being unacceptable.

I’m in the Lothian area. Thank you for sharing your experiences with me, I really appreciate the support.

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Hi everyone

Glad to see I’m not the only one who has been waiting for almost 7 months now for a colcoscopy , received a letter to say I had high risk hpv and abnormal cells, (they have changed in size) back in April. I have phoned my gp many times and apparently they keep pushing back my appointment, could be late November/December now. What makes matters worse is STV are pushing adverts telling people to go ans get their smear test to save their life. THE IRONY!!

I am hoping to hear something back soon, I have been on immunosuppressant drugs my entire life which severely weaken my immune system and my body cannot fight infection off (such as hpv) Worried things may have gotten worse over the long period of waiting, this was my first smear I went for back in March.

Take care everyone, I was relieved to see I was not the only one waiting for so long.

Any ideas who to call if in the Glasgow area for cancellations?

Thank you

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I saw that last night also on the news, it felt like a blow to the stomach.

I was reading this paper from the Lancet (https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(21)00078-5/fulltext). It describes the bottleneck that health care services will have now they are reopening cervical screening services. As colposcopy is a skilled services with little room for expansion therefore they will have to come up with plans to prioritize patients. If you scroll down to the table you’ll see they recommend prioritizing immuno-suppressed women. However, this paper is only recommending what to do, it isn’t national guidelines.

Maybe contact your GP again or the service (if you can). You would think if they are asking women to have their smear tests, they must surely have a plan for colposcopy treatment also.

I’m so sorry you’ve had to wait all this time, I can’t imagine the stress you must be feeling.

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Michelle, which hospital did you go to? How did you get your name down for cancellations
Thanks

I stay in the greater Glasgow area & I ended up going to Stobhill hospital which isn’t my local hospital but I took the cancellation rather than have to wait another 5 weeks or so. I had phoned a few times about this appointment & each time made it clear I would take a cancellation. Glad I did because I was told the changes I my cervix were mild & I ended up getting a loop procedure & a chunk of gnarly nastiness was removed ( that’s what I’m calling it) good luck :pray:

My first treatment for CIN3 was delayed and a nightmare to get, and then found out it was unsuccessful at the check-up smear (also delayed). Got told to wait 6 months before a repeat, which means I should have been treated in September but obviously that’s been and gone. So upsetting, and it’s horrible getting told things like “it takes ages to change! You’ll be fine!” when later they have to backtrack and explain that actually you’re in that rare group of unlucky folk :frowning:

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That’s truly awful. I’m so sorry you had to go through that. I hope you receive treatment soon. I would keep getting in touch with the service, you have to think about yourself.

It really annoys me that my journey in England was so different to yours. There shouldn’t be these inconsistencies within the NHS.

I’m so sorry.

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I’m North Lanarkshire so a different health board. My wait under NHS for colposcopy was 10 weeks which I thought was awful but 7 months is insane. With COVID numbers and people isolating there will be last minute cancellations so I would phone the number on your letter on a daily basis to check for cancellations. X

Thanks everyone!! I decided to phone Stobhill and asked to be put through to the gynaecology department. I spoke to a woman whi checked where I was on the waiting list, and said I was near the top. I asked for a date and she said they are now starting Saturdays because they are behind, so managed to get an appointment for coloscopy a week on Saturday, relieved to just get a date at least!!

If anyone else has this issue, I suggest you try and do this if you are Glasgow based!

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That’s wonderful news Lccj! I’m so happy for you. I wish you all the best.

NHS Lothian’s complaints service call me back today, they apologised that the letter that was sent is a generic one and has ‘follow up by telephone’ on it. All colposcopy appointments are in person.

They also stated they have put additional appointments in place and all patients with an abnormal smear will be seen within 11 weeks currently (this is coming down) and high risk or potential cancer will be seen within 2-4 weeks.

I would suggest if you have experienced a long wait to get in touch with you NHS boards complaints service and they will be able to look into your case (https://www.nhsinform.scot/care-support-and-rights/health-rights/feedback-and-complaints/complain-about-a-gp-pharmacy-dentist-or-hospital-in-scotland).

I want to thank everyone for sharing their experiences. It’s helped me to feel that I wasn’t alone.

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The STV/government campaign has actually been quite distressing for me even though I’ve had my discharge letter. I’ve got to get through the next six months of this hanging over me, knowing that if HPV/cell changes show up again I potentially start this hell all over again. There’s a chance the backlog won’t be as bad by February-March but if some of you are still having to wait as long as I did, I’m not hopeful.

It’s the fact that all the ad campaigns impress on us “it could save your life” that gets me. I said several times that we have it hammered into us before we’re even eligible to attend that these tests are important and it comes with a sense of urgency. To then be patronised essentially with “oh it takes ten years at least for cancer to develop, go away and stop worrying” as I was…I have a lot of resentment that I’m needing to unpack now.

Glad to hear that some of you have managed to get cancellations and good luck to anyone still trying. No matter what I said they refused to let me get seen earlier and as I said, my cell changes turned out to be worse than they thought. They were doing Saturday clinics in Glasgow even back in July so to me it seems to suggest the backlog just isn’t clearing.

Other than the Royal (I’m in the east end), my nearest hospital is Stobhill and that’s where I went. I think in the end. I was just made to wait and not even offered a cancellation, July was just when they finally got to me. I must’ve cried down the phone at least three times to various poor admin types who couldn’t do anything for me.

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It was Stobhill I went to as well. I got the cancellation with a 90 min notice. I basically jumped at it, even although it was Taxi’s there & back. I live literally like 10 mins away from Gartnavel hospital. I felt as though I was being patronised when voicing my concerns about the wait, even my gp told me not to worry if it was anything serious I would have been sent for straight away, my cell changes were mild. Well as far as I’m concerned what was happening in my cervix wasn’t mild, it wasn’t just a scraping of the cervix wall that was done it was what I believe to be a kinda large chunk was removed considering it came from up there. Iv already had breast cancer so the fear of god was in me & honestly I’m still concerned & will be until I get the results back. The weird thing is , is that it’s almost 2 years ago that I was told I had breast cancer. Everyone take care

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Thank you. And that’s good you were taken sooner and they got rid if the nasty cells. Hopefully you won’t need any more procedures.

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