Disclaimer: AccessAble kindly commissioned me to give my thoughts on Cervical Screenings for disabled women following my advocacy work on the topic.
In light of Cervical Cancer Prevention Week, what better opportunity to share what I’ve learned in the past 12 months from other women with physical disabilities since starting my petition, about accessing/booking your routine screening and troubleshoot some of the problems women like us face.
Jo’s Cervical Cancer Trust has been passionate enough to take a stand for our rights as women, regardless of ability and it’s been such a pleasure working with them on their campaign reassuring women and ultimately getting more attending this vital cancer screening, while championing to make sure disabled women are equally accommodated. My story was featured in their public survey in 2019 which sadly confirmed 88% of women agreed that their disability made it harder to access/attend their Cervical Screening, 63% admitted they couldn’t attend their Cervical Screening at all due to their disability and 22% are unable to leave the house because of their condition, yet their GP doesn’t offer home visits.
These are just a few of the revelations from the first-ever study of it’s kind specifically focusing on the barriers women with physical disabilities are facing in this day and age when being proactive about their cervical screening. While there’s still a large number of women in general who are fearful or otherwise don’t attend, a large percentage of disabled women simply cannot and that HAS to change as it puts us at greater risk of missing crucial signs of this often aggressive cancer where your best chance of survival depends on how early the cancer is detected.
What are some of the challenging you may encounter booking your Cervical Screening?
- Dismissive attitudes by staff at the person’s GP surgery when the individual makes their Dr/surgery aware of access needs. Some women have been fobbed off with comments such as; “Don’t worry you’re risk is VERY low as you’re not sexually active, don’t worry about it…” – a damaging stigma for people with disabilities.
- Lack of hoist provision in GP practices/general healthcare settings to enable a non-ambulatory wheelchair user, who may not be able to safely weight bear or otherwise transfer to the examination table to have the screening.
- The GP surgery not being able to offer the screening to be done at home for a housebound or bedbound patient due to smear tests and similar routine screenings not being covered by their insurance.
- Having to jump through hoops e.g multiple GP appointments combing over the individuals needs, chasing up via telephone or having to prove the screening cannot be done at the patients GP surgery, before being referred on to a GYNE/Women’s Hospital where they have hoists, specialist beds, etc to accommodate women with additional needs.
- Lack of training and understanding of different disabilities and how to support the patient. A lead example is women with Cerebral Palsy/Dystonia or other conditions where spasms/involuntary movements are common and will interfere during the screening procedure. Sadly many women have reported nurses becoming frustrated and not understanding the patient cannot control it, and giving up instead of adapting methods used to do the screening.
- GP surgeries simply being inaccessible, such as not being level access, narrow and tight corridors, and exam rooms, no disabled toilets, etc.
Booking your Cervical Screening when you have a disability
The number one bit of advice before you pick up that phone after receiving your ‘invite’ is prepare to advocate for yourself! It is every woman’s right to access their routine cervical screening on the NHS, like any other vital health screening. This is your life and heaven forbid you do develop cervical cancer down the road, you deserve the best possible outcome. That outcome is all dependant on early enough detection. Something only a smear test can truly provide at this point in time.
Note: HPV testing, a fairly new method, detects those more at risk of later developing cervical cancer which is brilliant. It’s important to know the test itself is conducted the same way as a smear test, so you may experience the same physical challenges. Some GP practices allow this test to be done at home which may make the procedure easier for some with disabilities, however, keep in mind only 70% of cervical cancers are caused by the HPV virus. Therefore it remains a very personal choice of whether HPV testing is a worthwhile alternative.
When booking a date for your smear test, it’s important to openly discuss your requirements that’ll enable the screening to be undertaken safely and comfortably in that first phone call. You may find yourself elaborating or repeating yourself when you chase up what it is that needs put in place but it’ll be worth it to have that (hopeful) peace of mind.
- Need a hoist? – Explain you need a mobile hoist to get on the exam table for x reason and stand your ground. If they do not have one, first ask if one could be sourced in time for your appointment, or if all else fails, ask for a referral to the nearest women’s hospital that has a hoist.
- Need a home screening? – Explain your need for the screening to be done at home, be prepared to be asked for proof of the severity of your disability in which give them permission to access your medical files. If their insurance doesn’t cover home screenings, as is the case for many practices, if being transported by patient ambulance lying down is an option then ask for a referral to the nearest women’s hospital or if this is not possible, consider at least having HPV testing which hopefully your GP can accommodate at home for you.
- Need somebody with experience of navigating involuntary movements/spasms? – You know your body best! If you know your spasms will interfere with the procedure, warn the person booking you in and request that it’s a MUST you have somebody experienced. DO NOT be fooled by, “oh they’re always very gentle” or “don’t worry love, we’ll take our time.” Any symptoms, particularly those involving involuntary movement disorders like dystonia or Cerebral Palsy can worsen with stress, so it’s vital you’re in the right hands. Exploring taking medication ahead of your appointment such as muscle relaxants may be helpful. If you feel uneasy about the way your practice is handling your needs, request a referral right away. Don’t put yourself through unnecessary traumas that may make you reluctant to have these screenings in the future.
- Need wheelchair access/hearing loop/sign language interpreter/good lighting or need to bring your guide dog? – Don’t depend on the receptionist’s view of what they deem as ‘accessible’, jump on the AccessAble app for professionally surveyed accessibility guides that include NHS trusts up and down the country. Check out this example of our family using the AccessAble app to get to and navigate around St Mary’s Hospital, Manchester, a well-known women’s hospital.
I hope this post has better prepared you for making that important phone call that could very well save your life. Before you go, if you haven’t already done so please consider signing my petition below. As many women have said before me, it shouldn’t be this hard… While many disabled women do have excellent self-advocacy skills and will fight until they see the result, there are many women with disabilities who don’t have a voice, know their worth or even their rights. Those are the women we’re fighting to change things for the most because it’s those women who are most likely to slip through the net and with catastrophic consequences.
Every woman should be able to access their Cervical Screening.
Every woman deserves to have a fighting chance against Cancer.
Every woman matters, no matter their ability.