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Has your impairment created barriers to getting a smear?

Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
edited February 2019 in Guest blogs

Every year in the UK, around 3,000 people will be diagnosed with cervical cancer. Cervical cancer is the most common cancer in women aged 35 and under.

Cervical screening is a free health test that helps prevent cervical cancer. It checks for cell changes on the cervix caused by high-risk human papillomavirus (HPV). It is not a test for cancer. You might hear cervical screening being called a smear test. This is just a different name for the same test.

cartoon image of a person laid on a treatment bed with a nurse performing a cervical screening

But we have heard lots of people with a cervix saying that their impairment has created barriers to accessing smears and other health checks and so today we are talking about how people with different impairments have been excluded or felt that barriers have been placed in their way of getting a smear.

Physical Impairments

Some people say that their local clinic is not accessible to them, this could be because they are wheelchair users and the clinic has steps or because they have an impairment like Cerebral Palsy (CP) and they feel that the person doing the smear is not educated about issues that might affect them, such as muscle spasms and the ability to get into different positions.

Mental Health challenges

This week we heard from our guest poster about how mental health challenges can become a barrier to accessing healthcare and that people living with mental illness are particularly vulnerable to experiencing inequalities including the lack of support to access health and preventative care. 

Invisible impairments

People with invisible impairments can also face barriers in getting their smears, this could be due to fatigue, chronic pain or difficulties in getting to the clinic or GP surgery.

Learning difficulties

Some carers, guardians, doctors or nurses don't think women with a learning disability need a smear test and sometimes carers and guardians do not know the person is having sex and may not help women with learning disabilities to get a test. It is important that women with a learning disability are given the option to go to a smear test. Jo’s Trust have produced some fantastic resources made by women with learning difficulties for women with learning difficulties.

Logo for Jos cervical cancer trust charity

Jo's Trust

Jo’s Cervical Cancer Trust is the only UK charity dedicated to people affected by cervical cancer and cervical abnormalities and know that some disabled people are facing barriers to accessing smear tests, they are currently researching the issue and trying to gauge what the barriers are and what needs to be done to overcome them.

On the Jo's Trust blog they talked to a woman with CP who said:

“With cerebral palsy, I require much more time for my appointment, significant assistance onto the examination bed (which in itself can be very dangerous without the option of a hoist), a warm environment for my muscles to relax and very patient nurses as CP does not allow my body into the standard position for this exam, so the nurses need to understand, not rush me and also work with my stiff body or unexpected spasms and still get a good sample.”

Jo’s Trust have this advice for disabled people who are struggling to access a smear test:

  • Call our helpline and one of our team can talk you through your options on 0808 802 8000
  • Contact your GP to discuss your needs and ask where you can access a test, this might include a home visit from a district nurse, at a local hospital or a different GP surgery 
  • You can also contact your CCG to ask about options in your area
  • Ask for a double appointment so you don’t feel rushed and have time to talk through your needs
  • Write to your MP encouraging them to take action on your behalf and that of other women living with a physical disability in their area

Have you ever found there are barriers in the way of you getting access to a cervical screening/smear? What happened? How did you overcome them? Or have they been too difficult to overcome? We would love to hear about your experience as would Jo’s Trust who are doing research into this.

 


Scope
Senior online community officer

Replies

  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Brilliant tips @mossycow, thanks for sharing!
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Thank you so much @mossycow - that is a brilliant post!!!
    Scope
    Senior online community officer
  • mossycowmossycow Member Posts: 495 Pioneering
    Sorry it's a bit long!


    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Not at all @mossycow - its fab!
    Scope
    Senior online community officer
  • Jean EveleighJean Eveleigh Member Posts: 122 Pioneering
    I have EDS and a tilted pelvis so we have to get creative when it comes to having my smear, it takes an extra few seconds and we have to adjust the way I lay but I've never missed a smear or had a Dr who couldn't take one for me ever - I've had abnormal cells in the past and had to have a biopsy so am very on the ball with getting it done.
  • lizboblizbob Member Posts: 6 Listener
    Due to disability from birth I have hardly any movement in my hips which makes a smear test extremely difficult, the last one I had the Dr was trying to get me in the best position possible in order to perform the test, but it was very painful on my hips and pelvis, I always dread them for this reason
  • Deeman66Deeman66 Member Posts: 5 Listener
    Hi im new and my first post ing so b kind 😂
    I dont hsve any physical disabilities but my mental health stops me accessing health care. I only made it to one appointment in 2018 en none so far this year .im diagnosed with PTSD, Borderline personality disorder along with extreme anxiety,depression. Ive only ever had one smear and im in my 40's. Im constsntly worried en stressed abt this but i make appments but never grt there. I no longer have any support becsuse of cuts. I miss inportant dates ie rent arrears ( im abt to b evicted) doctors dentist ect
    I cant even.answer the phone when they call
    PLZ HELP 
    cassie


  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @Deeman66
    Welcome to the community and I am sorry to hear  that you are having such a tough time. Are you getting any support at all with your mental health? You might like to read this post about how mental health can create barriers to healthcare.
    If you would like to talk through options for a smear, you could call the Jo's Trust helpline on 0808 802 8000 or contact your GP to discuss your needs and ask where you can access a test, this might include a home visit from a district nurse, at a local hospital or a different GP surgery.

    You can also speak to MIND and if using the phone is too much, there is a text number on 86463, they can provide information on a range of topics including:
    • types of mental health problems
    • where to get help
    • medication and alternative treatments
    • advocacy.

    They will look for details of help and support in your own area. 

    Scope
    Senior online community officer
  • Deeman66Deeman66 Member Posts: 5 Listener
    Hi sam!
    Thx for the reply and info. 
    Yes its been a huge barrier. I get flashbacks from physical contact, and also certain smells,  causes me to freeze and sometimes although not often blackout,which makes smear or breast examing ( i cant even bring myself to check my breasts for myself) almost unthinkable. Im terrified abt breast cancer but cant check myself. Dont know what to do . The text number youve posted i will try 2moro
    Many thx Sam
    cassie


  • Deeman66Deeman66 Member Posts: 5 Listener
    btw would b greatful any info on accessing support. Use to have psychatrist, support worker when i was homeless jn particular after a suicide attempt but little by little resourses and people disappearred as i stopped self harmin ect
    cassie


  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @Deeman66, are you registered with a GP at the moment?
  • mossycowmossycow Member Posts: 495 Pioneering
    Hey @Deeman66

    WeLcOmE!! 

    Nice to meet you and hear from you. All sounds tricky with the stuff you've got going on. Have you moved around and changed health people too? That must be hard too. 

    I'm not an expert but wanted to say hi.. But.. I do think... You've taken a massive step in posting on this Scope community and it's a real achievement. Maybe you feel like not much is in your control right now but... You've done a good thing reaching out here. 

    We minimise risk to our health in so many different ways and although getting screened and health car eis important there are many ways of keeping ourselves as well as we can and it sounds like you are working really hard on that. 


    In terms of support... Do you mind me asking? What would your dream support be in terms of accessing women's health checks? 

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • Deeman66Deeman66 Member Posts: 5 Listener
    @mossycow
    Thk u so much for yur warm welcom en interest .
    I think my ideal without doubt i would b able to access to my timetsble not theres.. 90 % of my appointments r no show. The days leading up to anything r anxiety riddled. So  If im having a good morning or afternoon y not take advantage? i could drop in and have a smear ect done then en there en  take advantage of that 'better day morning hour' or wot ever, if that meks sense. Even setting up buddy systems for a couple of weeks b4 my appointment en right up till and thro the examination so i have someone i  have some trust with supoorting me till its done...
    Secondly if health professionals really tried to put themselves in the situation of raped abused traumstised women, and all that brings to us then setting up clinics with empathetic health professionals with an understanding of our needs shouldnt b that difficult. Im going to go out on a limb and say the majority of women who  make up the percentage of women not having inportant health checks are women who have been raped abused, suffering frm PTSD ect why else would we neglect our health. Makes me so angry when women say "its only 2 minutes out yur life, to save yur life "! !! Its not helpful and shows they definitely have no understanding 
    cassie


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