Smear tests, learning disability?

[Mercury2702]

Hi, hope this is the correct place to post.

I care for my 25 year old sister who has a learning disability, she came into my care this year following my mums death.

Shes never had her first smear yet and under the advice of her LD nurse, they’ve booked her in with a double appointment to allow for extra time and said we can try and see if she tolerates it. However they’ve said going forward if she doesn’t, we can just monitor for symptoms as well. They said she’s very very low risk as she’s never had sex or a relationship and because of the extent of her disability she most likely never will. Just thought I’d ask on here if this is actually the case?

thank you

That should have said monitor for symptoms of changes rather than physical smear tests, although said if she doesn’t tolerate it, they obviously still send invitations

Has she ever had sex? She doesn't really need a smear test if she hasn't.

It's cost/benefit, isn't it?
Does she REALLY need one? Will it cause more harm than good ? I'd actually suspect so.

Are there alternatives, eg has she even vaccinated against HPV -or could she be?
Could she just be swabbed for HPV, without the visual inspection/cells taken/speculum.

Nb the cells no longer get looked at if the sample is clear for HPV anyway.

Has she had the HPV vaccine?

Plus they don't check cells from smears anymore .

They just check for HPV. That can be checked via a simple swab.

Cell are only checked when HPV is detected.

Crossed with @TheSpottedZebra

It is a particular annoyance of mine.

The NHS is lying to women and pressurising them into smears which are not needed. Self testing for HPV is available.

They only test for hpv now so surely if she has definitely not been sexually active then there is no point.

my relative with profound learning difficulties does not have a smear test. The distress that it would cause is not worth it.

No, no sexual activity ever. She doesn’t speak to anyone aside from me and my son, doesn’t really leave the house and was vaccinated against HPV in secondary school, the same as me, so in that case does she actually not need to go through the distress of a smear? She’s never had anything down there so even a smear would be invasive for her but I just want to do the right thing, that’s why I thought I’d ask with them saying instead they can just monitor for symptoms of any cervical changes

Decline from what you have said.

Unfortunately surgeries get payment for the amount of smears they have, hence why they are often heavy handed with trying to get people to have one (I know most will disagree but it feels like state sanctioned assault - women are being bullied into a procedure that they no longer test for. They do not look at the cells if you don't have HPV- my doctors surgery tried to claim I was mistaken but it is the truth)

Plus look at the attached. If she has HPV vaccine then i can't see that it is worth the trauma.

https://publichealthscotland.scot/news/2024/january/no-cervical-cancer-cases-detected-in-vaccinated-women-following-hpv-immunisation/

Someone who has never had sex and has had the HPV vaccine doesn't really have much need for a smear - all they do now is test for HPV, and if you don't have it, they don't look at the cells any further.

If you are very confident she’s never been sexually active I would decline. The test only looks for HPV, not cell changes - they then only look for these if the HPV is positive. If she’s never had sex then the HPV would be negative and there would be no point her having the test. There’s not even a chance she could have had a sexual encounter you wouldn’t know about?

I think she would need to have capacity to consent to this - would she?

I have known lots of people supported to get this. Our local ld nurse has had a variety of techniques including videos, tour of the clinic, gaining anxiety prescriptions but I think this is a procedure you cannot make on her behalf so she would need capacity to consent. Many people with learning disabilities are sexually active

It’s only a HPV test now, if it’s negative they don’t look at the sample at all.

Never had sex, always supervised, had the vaccine - honestly is the benefit to her worth the distress of doing it?

I'd decline and opt her out of further requests, there's a form you can fill in.

Thanks for all your replies,

yes 110% she’s never had sex and whilst people with LD still can, my mum was very very protective of her, she never went anywhere without my mum and when my mum suddenly died, she’d never been a night without my mum. She finds the idea I’ve had sex and had a child gross as her mental age is a lot younger, if one day she did want a relationship and sex etc I’d support her but she has a lot of social anxiety and will only go to the shops herself nearby

She has capacity and I’m a nurse myself so I support her to make her own decisions but she’s very much ‘yes I’ll try it’ ‘yeah I’ll do that’ even if it’s something she doesn’t want to do and won’t speak on the phone or attend appointments alone so I’m her third party for her health at our GP, but then will sit crying or worrying

No, no sexual activity ever. She doesn’t speak to anyone aside from me and my son, doesn’t really leave the house and was vaccinated against HPV in secondary school, the same as me, so in that case does she actually not need to go through the distress of a smear?

No she doesn't. It's sexually transmitted.

It’s not OPs decision to decline…..she can’t make decisions like this just because she’s next of kin….the LD nurse will be guided by the mental capacity act 2005…..she will all attempts to see if the DS can give an informed consent….if not, a best interests decision can be made whether to go ahead or not based on risk / DSs ability to tolerate without distress …..even if that’s just the LD nurse, the practice nurse and OP
has the LD nurse provided ‘easy read’ literature for your DS OP?
whats your siblings cognitive understanding of the procedure? ( not the reasoning why, but actual understanding of what will actually happen?)
I’ve known ladies with LD have cervical screening and others that haven’t…. It all depends on the individual…..but having an LD is not a blanket reason not to even consider.

If the DS can give an informed consent

The DS needs to be informed. But on the reality of a smear not on the basis of a government target. There is no need for a speculum or scraping of cells when they will not be tested.

I agree there can not be a blanket decision, but the OP being informed can help to support her sister and advocate for her.

A swab for HPV would be the very most that should be suggested, but there are not targets for that.

Thank you all for your replies

We haven’t been provided with any easy to read format leaflets on smears which I’ve seen online other areas provided for women with LD. I’m going to ring the doctors this morning to see if they can try and speak to her over the phone and provide information so she can make an informed choice if it’s in her best interests and see what they say regarding risk but I don’t know if there was any risk there with her never being sexually active