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Cervical screening when deaf

Posted on: Monday, 5th April 2021 by Louise Goldsmith, Claire Holland

To mark Deaf Awareness Week, we hear from 2 deaf women who have shared their experiences of a cervical screening (and colposcopy) appointment, as well as their top tips for others. Claire Holland is the Deputy CEO of Enhance the UK. She was born deaf and wears a cochlear implant in one ear. 

Louise Goldsmith is an award winning Deaf Awareness advocate. She is profoundly deaf, wears two hearing aids, and also has tinnitus. She is an Outreach Officer at Deafblind UK. She is also a columnist for the National Deaf Children’s Society magazine, and a volunteer for Hearing Dogs charity. 

Claire

I battle with feelings of anxiety before, during and after the smear test takes place. And I’m not alone. The first time I had a smear test I didn’t really understand what was going on. I’m sure that’s common for many women but when you’re deaf there's extra things to feel anxious about. 

"I felt panicked that I’d be exposed"

For example, at my doctor’s surgery the examination room is right next to the busy waiting room. Before my smear test the nurse left the room for me to get undressed. She said she’d knock to make sure I was behind the cubicle curtain before coming back in. As I can’t hear the knock on the door, I felt panicked that I’d be exposed.

I explained that I was deaf, but unfortunately the nurse didn’t adapt her behaviour to ensure I was properly briefed. When preparing for the test she kept turning her head away to organise the equipment. This made it impossible to lipread, so I lay there with my anxiety growing by the second.

"Instead of moving her head so I could lipread, she just stopped talking"

Once my knees were up and a sheet covering me, I couldn’t see what was about to happen. I knew she was talking to me, but I couldn’t hear what she was saying. I said “I can’t hear you” and instead of moving her head so I could lipread, she just stopped talking. When she inserted the speculum there was no warning, so I tensed my body, and it was really painful. (I’m told by hearing friends that the nurse tells you when it’s about to be inserted and whilst it may be uncomfortable it usually doesn’t hurt). I also left the test with no idea of when to expect the results and went home upset and worried. 

My next experience of cervical screening was much more positive. The nurse told me her cousin was deaf, so she had great deaf awareness. At the end of this post there are tips on how she made this test a much easier experience for me.

My aim of sharing such a personal insight is that it will help the disabled community have better access to the services others access easily.

Louise

During my appointment, I was slightly nervous, because of the communication barriers that I would face. Due to COVID-19, there were new procedures in place. On arrival, I was met with a nurse who wore a mask. I immediately told her that I was Deaf and reliant on lipreading.

We were quite lucky, because the room was big, so there was extra space for the nurse to move the patient’s chair further away from her desk. She gestured me to sit in the chair, lowered her mask, and from a distance, she asked me questions regarding my health and explained the procedure to me.

She drew the curtain and gave me some privacy to undress waist down. She gestured me to lie on an examination bed, which was covered with a large piece of paper towel and she gave me a sheet to cover myself. The nurse was masked and gestured that she was going to begin the procedure. The procedure was quick and was over in a matter of minutes.

"They luckily made special allowances, and allowed Mum to come with me as communication support"

My results came through the post within a two-week time scale… but they were not what I was hoping for. As an anxious person, reading this letter with no medical professional present to reassure me, was difficult. The letter was an invitation for a colposcopy appointment at the hospital. The first thing that came into in my head… Cancer.

My anxiety went through the roof. I often cried during those few weeks. When it eventually rolled around the corner, I was so eager to go and just wanted it to be over and done with. The letter stated, that due to COVID, the patient had to go to the appointment alone. Mum spoke to the lady on the phone and explained that I am Deaf and reliant on lipreading, so they luckily made special allowances, and allowed Mum to come with me as communication support (and moral support!)

"The nurse removed her mask and was more than happy to do this, to ensure I understood"

On arrival in the consultant room, I was met with two masked nurses, we quickly highlighted that I am Deaf and lipread. I felt confused and lost, and constantly found myself looking at Mum every time I heard their muffled speech through their masks. Mum swapped her opaque mask, to a transparent visor, to ensure she could successfully relay information to me. After a short moment, one of the nurses removed her mask and was more than happy to do this, to ensure I understood everything. 

In the procedure room there were four nurses, all wearing masks. Two of the nurses were in the consultation room with me before. One of the nurses informed their colleagues that I was a Deaf lipreader, to make them aware of my communication struggles. One of the nurses removed her mask for me and talked me through what was happening. She told me to try and relax (slightly difficult when you are anxious!) and explained what was happening, step by step. 

Top tips from Claire and Louise

Claire

Here’s what the nurse did to make the smear test a much easier experience for me.

  • She explained the procedure from start to finish before asking me to get ready and lie on the bed
  • Whilst explaining she maintained eye contact, used gestures, and demonstrated with the speculum what would happen. When I didn’t understand one part, she got a pen and paper and wrote it down.
  • When leaving the room for me to get undressed she said she’d be back in 5 minutes, rather than saying ‘she’d knock’. I looked at the time on my phone, got ready and waited.
  • We agreed that she would tap my leg as a sign that she was about to insert the speculum, giving me a moment to relax and prepare.
  • She understood that I was very anxious because of my previous experience and reassured me.

Louise

  • The communication barriers are daunting at first, but if you explain your communication needs, they are very accommodating.
  • Take a close friend of family member with you, someone who you can trust. Book a BSL interpreter, or a Lip-Speaker from ‘Lipspeaker UK’. COVID has restricted a lot of practices, but clear communication is highly important during these procedures, so special allowances can be made, if COVID safety restrictions are followed and maintained in a sensible manner. 
  • Be as open and honest as possible with the practitioners and discuss your worries, this helped me massively and took a lot of weight off my shoulders!

Louise is on Instagram and Twitter, and writes a blog.

Claire is the deputy CEO of Enhance the UK.

For more information on cervical screening, read our information pages >

The following organisations offer support to deaf people and people with a hearing impairment:

RNID > 

Sense >

Deafblind UK >

Categories: cervical screening

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