The Telegraph: Narrow doors and no hoists: why disabled women can’t have life-saving cervical cancer screening with Jo Moss | 10 August 2019

 
By Kate Sanger, Head of Public Affairs, jo’s trust, 08 August, 2019.

Cervical screening simply saves lives. Thousands every year in the UK. It’s the best prevention against cervical cancer and at Jo’s Cervical Cancer Trust we see first hand the devastation, fear and life-long consequences it can bring.

Going for a test can be difficult for many reasons – embarrassment large among them. But every eligible woman should be able to access it if they choose to do so. Sadly this is far from the case. We have found that the needs of women with a physical disability or physically debilitating symptoms are often being ignored.

In our latest research we found two thirds of women with a physical disability have been unable to attend cervical screening. Ethically, legally and morally it should not be the case that some women are faced with additional hurdles or even being denied access to this potentially lifesaving test. 

‘It took me five years to get a test’

Jo Moss, 44, Norwich

Jo Moss

All women are invited to cervical screening, and all women should be able to have access to a test.

It can literally save a life. Yet it took me five worrying years of fighting, and numerous letters to my GP, for me to finally get one.

I have Myalgic encephalomyelitis (ME), and fibromyalgia and I’m not alone in struggling to get tested. For women with physical disabilities it can be extremely hard or even impossible.

My ME is severe and it greatly restricts my mobility and my ability to carry out even the most basic tasks. I live in a darkened room with blackout blinds as I’m hypersensitive to light, and I wear earplugs because even normal levels of sound are painful.

I even had to shave my long hair because washing and drying it became too difficult, and it was also painful on my skin. I cannot sit or stand for more than two minutes at a time without severe pain, dizziness and tremors. This means I am confined to my bed for the majority of the time.

When I attend hospital appointments I travel on a stretcher in an ambulance. I simply cannot visit my GP surgery. Should this mean that I can’t have a test which could prevent me from getting cervical cancer?

Home test

I wrongly assumed that because I get home appointments for blood tests, injections and dental care, it would be just as easy to organise a home visit for cervical cancer screening.

I spoke to my GP about having a test in my home but was told that it was not possible, and no other arrangements could be made. I campaigned, made phone calls and wrote letters for years, and finally I was allowed a test at my home. Thankfully, my results came back clear.

There are potentially thousands of disabled women struggling and failing to get cervical cancer screening – this is not fair.

When I had a test at my home, it turned out to be a fairly easy process. The nurse was lovely. She wore a head torch and we adjusted the height of my bed, as I have an adjustable hospital bed at home.

Concerned that other patients would have to go through the same long battle I have, I asked the nurse if a home test was an option to other women who are unable to leave their house. Sadly, the answer was “no”.

I was told I am an exceptional case due to the length of time since my last screening (8 years), and the long term nature of my ill-health.

There are potentially thousands of disabled women struggling and failing to get cervical cancer screening – this is not fair. I’ve even been told that women with physical disabilities are ‘less at risk’, or because cervical cancer is rare, not to worry about not having a test.

That’s really hurtful to hear. It’s like our needs are not taken as seriously as those of an able-bodied person. It’s so important that we make this test accessible to everyone who needs it.

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