Disabled women need to know too… | Smear tests SAVE lives

A lady with a headscarf on, crying into her hand discretely facing a curtained window. Next to it reads

My name is Fi Anderson, I’m a disabled Mum of 2 precious little girls and live in Bolton, Greater Manchester. I am also 30 and have never had access to a smear test.

On average women are invited to undergo routine smear tests from age 25, to test for any abnormalities in the cells around the cervix, which could potentially be pre-cancerious and therefore be an excellent way of detecting cervical cancers A LOT sooner than if left until physical symptoms manifested. The sooner the diagnosis with any Cancer – the better the outcome.

Like every other woman in the UK, I received my first letter from my GP at the ripe age of 25, saying that I should ring and schedule myself for a smear test at my earliest convenience. The letter was combined with many a leaflet on the benefits of these routine tests, the risk factors for Cervical Cancer and what to expect during the short procedure.

Jo's Cervical Cancer Trust poster with the quote;

The later of which many young women worry about, often so much it puts them off going at all! If you’re not aware, a smear test is rather invasive – especially if you’ve not had intercourse prior. Although most women experience discomfort due to the speculum, there are some women who find the process painful. Me being quite the researcher had investigated all my smear test anxieties many years prior to receiving my letter. I’m a strong advocate that these tests do save lives and therefore the NHS should bring the test forward (in my opinion) to 18. Although it is rare for women below 25 to develop Cervical Cancer, I had read one very heartbreaking story of a teenage girl who’s mother was desperately petitioning the government to bring the age forward, after her daughter died of undetected Cervical Cancer. This was despite her being at the stage of having irregular bleeding, low blood counts and other markers for Cancer but according to the young ladies family, the NHS did not test for it until it was too advanced – just because it wasn’t “common.” From then on I knew in my heart that nomatter how scared I was personally of the procedure, I’d get it done.

Cancer holds no prejudice against race, gender or lifestyle. It doesn’t care who you are. Everybody is at risk. We have the ability to be one step ahead of this monster (at least this form), a procedure to test for abnormal cells is FAR easier to go through than months/years of Chemo and radiotherapy.

So there I was, on the phone to my GP surgery to ask about accessibility, particularly transfering onto the examination table with the stirrups. Not being able to self-transfer as a wheelchair user with Muscular Dystrophy is often problematic at ANY Dr’s appointment involving examination of anything below the waist. Even in 2018, hoists are not commonly kept at GP practices for non-ambulatory / non weight-bearing patients like myself, in fact you’re lucky if they have a mobile one in a hospital period. If they DO, they are mobile hoists that only 1/10 care professionals have ever seen before, let alone know how to safely work. You’ll be lucky if somebody remembers to charge it up every night. This is why all my exams, x-rays etc are done in my wheelchair. Things in tests are often missed for people like me simply because we undergo a less thorough exam as we cannot get onto the table.

Stock photo of mobile hoist, it resembles a small crane that attaches to a sling that hoists the patient up by a handheld remote. The hoist is on wheels so when patient is in the air suspended you can wheel them over the bed or another chair
Mobile hoist (patient lifting/transfering device)

Somehow though I naively had faith that they’d have a way to get somebody unable to walk and transfer without a hoist or being manhandled, onto the table because this was a routine test that ALL women are invited for. Disabled women included.

I had to explain my circumstances of the extent of my limitations was to such a degree I’m hoisted for all transfers and that to enable me to have access to a smear test screening, they’d need to find me a mobile hoist and a healthcare professional at the practice who was trained to use it. Realistically I could of had my PA accompany me to operate the hoist and preform a safe transfer, just like we do every day, several times a day at home. That would elevate one issue! Yet thanks to health and safety gone mad, NHS hospitals/healthcare centres aren’t allowed to let patients relatives or paid carers (who are MORE than qualified) operate this “heavy machinary” because they are not insured to do so.

In the end I spoke to 4 different members of staff at my GP practice – a receptionist, a different receptionist, a nurse and my GP, all to try and resolve the hoisting dilemma. Each time basically giving my whole medical history of why I cannot do a stand/slide transfer like…how to put this…what they term “normal wheelchair users.” I knew what they meant but their wording could of been better. At the point of talking to my GP, which meant I had to book a non-emergency appointment with him a fortnight later to discuss a hoist, I was getting frustrated. Getting a smear test done shouldn’t be this hard! I even asked if they could get hold of a mobile hoist from the hospital for a day so I could have it done, they umm’ed and arr’ed moaning about paperwork, how long that’d take and went as far as saying I could be taking it away from patients in greater need! I was being guilted into dropping my pursuit to have a routine screening that all other women had equal access to, that was the bottom line. My GP tried to talk me down multiple times by 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.

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.

If you think about it. We know in the UK alone there are ¼ a MILLION disabled people who need Changing Places toilet facilities that have hoists for safe transfers and an adult sized adjustable changing bench. So that’s 250,000 individuals who are hoist only transfered, roughly half of those individuals are disabled females.

That’s 125,000 give or take disabled women who have not or will not have access to early Cervical Cancer detection because not enough healthcare practices/hospitals have a hoist AND someone to safely operate it…

After my ordeal, I did ring around some NHS trusts to see if anybody was keeping tabs of the number of disabled women who hadn’t booked for their smear after their letter. No trust I rang could tell me of such a record being kept. It was simply as if we, disabled women in modern day Britain – Did. Not. Matter, and that is utterly appalling.

Needless to say I never did get my smear test as nobody was willing to fight my corner enough so I could have equal access to it like any other woman.

Thank you for taking the time to read about this important issue. I hope it’s created a better understanding of what disabled women face trying to access cancer screenings. Before you go, why not sign this petition to drop the average age of smear tests from 25 to 18 years old? It needs to reach 100,000 signatures before it’ll go up for debate and consideration in Parliament. We’re nearly there! Your signature makes a difference. Be part of change for the better, help save lives of young women…

Make a difference, add your support - Sign info graphic


Have you had a similiar experience? What are your thoughts? Would you back a campaign to get better access to hoists in medical centres for disabled people?

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4 thoughts on “Disabled women need to know too… | Smear tests SAVE lives

  1. Oh Fi – this is awful! This is something that most women in Britain just take for granted and you absolutely should have access to as well. It’s awful that this issue hasn’t been resolved in 5 years! #blogcrush

  2. This is awful. A few years ago I met a girl online as we were both pregnant with our girls at the same time and we got to be friendly and even met up once. Sadly she passed away a year later having cervical cancer. This made me think I need to go for my smear and it came back abnormal. After 2 years of tests it got worse to the point 3 mins the later it would have gone to cancer and I had to have a chunk of my cervix removed. I was extremely lucky. I had never thought of there being access issues and the fact this isn’t more well though out is appalling. You should be able to go and have it done and not be fobbed off

    1. My heart goes out to you Stacey, thank you so much for taking the time to tell us your story. The sad fact is, we never know what will be around the corner and Cancer is such an horrendous monster. It doesn’t care who you are or your circumstances, nobody is immune. I’m so glad you got your smear test when you did. Sending a hug your way x

  3. I was so sad to read your article and to read that you still haven’t been able to get your smear test. I have several painful disabilities and would echo your thought that disabled women ‘do not matter’ not just around smears but other medical procedures too. I have signed your petition about lowering the age for first smears and I’d love to know if you know about
    a petition for providing access to smears
    for disabled women?

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