Cervical screening letters after hysterectomy- what would you do?

[EssJayPee]

In November 2016 I was diagnosed with stage 3C fallopian cancer and underwent a full hysterectomy as well as six months of chemo. Since then I have received four letters inviting me to make an appointment for cervical screening.

I laughed the first letter off as an ironic mistake. After the second, I personally requested my GP remove me from the screening list. I then received a letter stating that I’d “opted out” of cervical screening and listing the reasons I should reconsider. I was very upset and spoke with Publc Health and my GP practise manager, making my feelings very clear.

Now I have received yet another letter, inviting me to make an appointment for cervical screening, this time with a booklet entitled “Helping You Decide”.

I’m so furious. I’m trying to look forward and put cancer behind me, but these constant reminders of my surgery and what I’ve been through are causing me great distress.

What would you do in my situation?

[Lizzielizzielizzie]

Could you actually make an appointment and go, this making them really realise that it is unnecessary? I’m really not sure what else you can do... you’ve done everything you can. I can totally understand why you are upset about this, it’s very insensitive.

[EssJayPee in reply to Lizzielizzielizzie]

Yes that’s not a bad idea Lizzie. I worry that I’ll just cry if I’m face-to-face with them but perhaps it’ll get the message across.

[Lizzielizzielizzie in reply to EssJayPee]

I wonder if there are some kind of stats the surgery are measured on, judging them on how many of their patients attend for cervical screening? Just can’t see why they are doing this to you!

[Starry]

Big hugs xx sorry for your distress.

Unfortunately the screening system is standardised and not controlled locally by your GP. It's an imperfect system. I had a similar issue in trying to defer screening after gynae diathermy surgery. I accidentally then got the opt out letter and thought it a bit heavy handed. Data should get synched up but the system just doesn't seem to cater for exceptions well and gps and ultimately the NHS in general is overrun with demand and inadequately resourced. If you want to do something vote out conservatives at the next election as despite their words they're destroying it to set up a mostly private system :(.

If you want to complain and confirm your ineligibility it may be worth finding the screening centre details to write to on the material you were sent. If not there is more info on the informed consent and withdrawal process here.

gov.uk/government/publicati...

[EssJayPee in reply to Starry]

Thank you Starry. I’ve emailed the practice manager again but I’ll also follow up on opting myself out. I didn’t know I could do that, so that’s helpful, thanks.

[EssJayPee in reply to Starry]

Oh and don’t worry. My vote will definitely not be with those trying to destroy the NHS!!

[Starry]

Glad it helped. Privacy legislation is on your side, so legally they then as the company holding your data have to comply or risk some quite hefty fines.

[Tjbear]

It’s actually the person and place where your surgery was done that should notifies removes you from the national data base not your GP surgery. This will continue until they do unfortunately it is extremely upsetting.

[EssJayPee in reply to Tjbear]

Thanks for your reply. It may be that surgeons should be advising the screening team, but it does fall back on the GP surgery as well. NHS England have confirmed this. Plus I have been assured by the GP practise manager on two previous occasions that they would “ensure this doesn’t happen again”. The list of patients due to receive letters is sent from the screening team to the GP, who then advise who should be opted out.

[Pinknickers]

Are you 100% sure you don’t need something called a high vault smear? I had hysterectomy and removal of my cervix but didn’t automatically come off the screening register. I spoke to the cervical Nurse specialist at my hospital and she said it’s something to do with how they do the surgery and your surgeon then arranged for your name to be removed from the register. A high vault smear is a one off screen for some woman post removal of cervix. It may just be worth checking with your surgeon.

[EssJayPee in reply to Pinknickers]

Thanks but I’ve had the follow-up smear with my surgeon. The high vault smears are not part of the cervical screening program, so up to the surgeon to take care of. I’ve spoken to NHS England twice now and it is definitely up to the GP surgery to remove me from the list. Although as Starry told me, I can do it myself as well, which I will follow up tomorrow.

[Sylv_99]

So sorry to hear this is happening to you. I’m in exactly the same position as you, I keep getting the letters even though I’ve complained countless times and had multiple promises that I wouldn’t get the letters again. It’s so upsetting so I know how you feel xxx

[EssJayPee]

Sorry to hear you're having the same experience Sylv.

I heard back from the practice manager this morning and she said "I see you were sent a form back in November, so I can't understand why you weren't removed from the list". So basically blaming me. Except I did not receive a form, no form was ever mentioned and all I received was a letter informing me I'd "chosen to opt out". Grrrrr. Anyway, I said this to her and she said that they would fill out the form "for me" and she'd let me know when she received notification that I'd been removed from the list. Fingers crossed this is the last I hear about it!

[Sylv_99]

I hope so!! xxx