We all know the importance of having regular smear tests. As women, we have it drummed into us how vital they are, and a recent campaign was launched following a severe decline in the number of women having this potentially life-saving test. It appears a lot of women are avoiding smear tests out of embarrassment. Yes, it’s not a pleasant procedure but cervical cancer screening is vital, and it saves lives.
But what if, like me, you are denied the option?
Myself and potentially tens of thousands of other disabled women in the UK alone, are being abandoned, and left unprotected. This needs to change.
A few weeks ago a facebook friend shared a post from the campaign to get more women to attend smear tests. I commented about my situation and my friends were horrified that I was being denied access to a smear test.
More recently, a Twitter campaign started by Fi Anderson highlighted this issue. And the response was immense, but extremely worrying. Over 100,000 people have now signed a petition “Make Cervical Cancer Screening Accessible For Disabled Women Like Me”. So what is the issue, and why are thousands of disabled women being denied access to potentially life-saving smear tests?
Why are so many disabled women being denied access to smear tests?
In the case of many disabled women who are physically unable to transfer from their wheelchair without help, the lack of available hoists seems to be the issue. In my case, I’m virtually bed bound, and I was categorically told a smear test could not be carried out at home, and no other options were proposed. GP surgeries are either unwilling, or unable to adapt their practices to accommodate women with disabilities like ours.
In her blog; Life Of An Ambitious Turtle, Fi explains how she was fobbed off, and ultimately denied a smear test, because there wasn’t a hoist available to transfer her from her wheelchair to the examining table. Her GP even downplayed the need for a smear test saying “it’s a rare cancer, he could simply take me off the list for routine checks just because it was too hard for them to arrange a hoist.” to try to justify the situation.
Fi explains; “The whole situation got me thinking, how many disabled women was this happening to? How many were being fobbed off or guilted like me into simply “letting it go” and let cancer go undetected? How many disabled women have died from Cervical Cancer because it wasn’t caught early enough, due to ACCESS issues of all things?! It’s barbaric. It’s horrifying. It’s tragic. Disabled women are being hugely let down. Are we less worthy to get early treatment because it’s a bit of extra faffing about to arrange a hoist? I don’t understand why this is happening.”
My situation is a little different to Fi’s but the outcome is the same – I am unable to have a smear test that could potentially save my life.
Here’s my story. Please help me raise awareness about this unjust situation;
I had my last smear test 7 years ago. Up until that point I routinely had smear tests every time they were due. When I was on the combined pill in my twenties, this was every year, this changed to every 3 years in my thirties and forties.
6 years ago my health deteriorated severely to the point I became virtually bed bound, and this is the situation I still find myself in today.
I have a severe form of ME/CFS which greatly restricts my mobility and my ability to carry out even the most basic tasks. I cannot sit or stand for more than two minutes at a time. I cannot travel by car sitting up. When I attend hospital appointments I have to travel by hospital transport on a stretcher in an ambulance. I simply cannot visit my GP surgery for appointments or smear tests.
So when my smear test reminder letter came through 4 years ago, I rang up my doctors surgery to arrange the test, assuming there were practices in place for someone in my position.
You see, I have doctors and nurses home visit appointments, the district nurse visits me at home for blood tests and injections, and I even have domiciliary care for dental treatment. So I wrongly assumed a smear test could be carried out at home, or that another option would be available to me for such a vital test.
When I rang my GP I was told that smear tests cannot be carried out at home, and that I had to visit the surgery – and I wasn’t given any other options. But my health situation means this is impossible and I’m not alone.
It is estimated that as many as 125,000 disabled women in the UK are being denied access to smear tests simply because there are no practices in place to accommodate these women and their disabilities – although there are no official figures, so the true extent of the problem is not known.
I have since asked my GP again, explaining my situation, but yet again I was told there were no other options. If you would like to read my GPs response to my concerns, I have written a follow-up to this post called; I am still being denied access to Cervical Cancer screening
So, here I am, 7 years since my last smear test, abandoned yet again by the NHS, unable to have this vital test.
Why isn’t there a hospital clinic with hoists for disabled women, where smear tests can be carried out? Why can’t smear tests be carried out at home?
Please sign the petition
The following is taken from Fi Anderson’s petition and it sums up the true extent of the problem;
“As a result I run the risk of cervical cancer going undetected purely because of an accessibility issue related to my disability. To this day, along with the thousands upon thousands of disabled women who need hoists, I still receive letters reminding me my smear test is overdue and that by skipping it I’m risking my life. Some women are being asked to sign saying they’re REFUSING the routine screening, to stop getting these letters despite their GPs knowing full well it’s an access need being unmet and a possible breach of the Equality Act 2010.
As a community we are calling for the NHS to take steps to give people with disabilities equal access to vital cervical cancer screening. Including by making hoists available at every NHS medical centre!”
Please help me raise awareness by signing the petition. Thank you x
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This is terrible. I didn’t know about it. I’m signing the petition.
Thank you!
Me too! Disgusting that this discrimination happens just because it is inconvenient for doctors.
Truly awful that they aren’t equipped to help people in this situation. Signed and shared x
Thank you Ruth
Thank you Jo and thank you to Fiona. I need cervical smears at home because I am too unwell to leave the house. I have friends that have had smear tests at home so it is possible.
Thank you for your comment Sarah. Are you able to say where your friends live? Are they in the UK? It would be interesting to find out why some GP practices are able to carry out smear tests at home, while others are unwilling to even contemplate it. Thanks.
I had to battle to get my last one as I need to be hoisted. I needed to go to a hospital in the end where they had the equipment but it was a battle and delayed by months whilst the medical professionals tried to work out how to do it. It was shear stubbornness and some luck that meant I eventually got one.
To be refused a smear test on the grounds of disability is discrimination
Yes, it is discrimination and sadly a widespread problem that has not been documented. The NHS are saying its just “isolated cases” which obviously isn’t true. I’m glad you got your smear test in the end, but it shouldn’t be that hard.
Why on earth can disabled women have thier routine smear tests ??!!!
This is unacceptable.
Please arrange for ALL women to have access to smear tests !!
Hi as I live in his constituency I emailed the health secretary on this matter (I personally am able to attend smear tests but my mum is disabled) and in his response he quoted this in my reply In November 2018, Public Health England (PHE) published guidance on Cervical screening, which included plans for improving access and uptake, which lists ways in which the screening can be made more accessible. In particular, it states that “Primary Care should consider the clinic facilities for women with a physical disability, including access to the venue, the height of the couch, the woman’s physical limitations, the possibility of a domiciliary visit, and the need for assistance and seeking specialist advice if necessary”. if you or others are still struggling with getting access perhaps this in a complaint would help?
Thank you for this information Claire. It’s frustrating that these guidelines are in place, but GP practices are still refusing to adapt to help disabled women.