Has your impairment created barriers to getting a smear?
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.
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.
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:
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.
Comments
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So pleased that Scope is discussing such as important area of our health.
Once upon a time. When I was an able bodied teacher.. we lost a young man, aged 17, because he was too embarrassed to get a lump on his testicle checked. The idea that medicine could have saved him and he'd now be starting a family of his own now just because of a simple check up on his balls changed my attitude towards my own health screening.
I resolved to always have my body checked, taking advantage of our fab NHS.
But it can feel harder as someone with a vagina, cervix, uterus and breasts as our bits are internal and locked away from the wise eyes of medical people.
And then as my body had become less able and now I am disabled it has become even harder.
But no less vital!
The cervical screening I had just over 6 years was really hard. Nothing to do with a sepculums and hands up my dodar but it was everything else! Getting there... Getting from the car to the gp, getting into the flipping tiny room, onto the bed.. And even listing down was very painful.
But I have a FANTASTIC nurse who does my screening. That first time as a disabled person she made adjustments and bow we have a similar way each time.
This is what we do:
+ I book a double appointment with the same nurse
+ We use the bigger nursing room
+ I book in summer so I have less clothes and more chance of being able to use my power chair.
+ I take my top up pain medication (for the body moving not the inside stuff)
+ She makes me laugh, we chat, have a gossip. That extra time and relaxation is SO important.
+ She helps me dress and u dress. If a don't have a carer with me.
+SHE LISTENS! If I say stop... She stops... Etc. Very important.
+ she tells me I have a beautiful cervix ?? and explains carefully everything that will and won't happen.
She is such a gorgeous and passionate women. She literally spends 40 hours a week in vaginas. She has seen it all!
There's a faint ripple of people against cervical screening believing it is better to under diagnose than to over treat... And I guess... That's everyone's personal decision and I respect that.
But my decision, and your decision, must be respected too.
Just because our bodies and different and may take a little longer... Maybe even need a creative nurse! We are still entitled to look after our beautiful amazing bodies in the best way possible.
I dedicate this post to my awesome screening nurse and her colleagues5 -
Brilliant tips @mossycow, thanks for sharing!0
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Thank you so much @mossycow - that is a brilliant post!!!
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Sorry it's a bit long!
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Not at all @mossycow - its fab!
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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.0
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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 reason0
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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 HELP0 -
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.
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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 Sam0 -
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 ect0
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Hi @Deeman66, are you registered with a GP at the moment?0
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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?1 -
@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 understanding0
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