‘I was denied cervical screening because of my disability’

This article was taken from: https://www.bbc.co.uk/news/health-49266785

By BBC Health News

Women with physical disabilities often have to fight to access cervical screening, with some denied it altogether, a charity is warning.

Some said they hadn’t had smear tests for years because hoists were unavailable and testing at home was not an option, a report found.

Other women said they felt invisible and their needs were not understood.

Jo’s Cervical Cancer Trust said the inequalities faced by women with disabilities were “not acceptable”.

“Cervical screening saves lives and every eligible woman who would like to take part in the screening programme should be able to,” it said.

When Kerry Thompson, 40, from Milton Keynes, who has muscular dystrophy, was told she could no longer have cancer screening at home when she moved house.

This was despite the test showing up abnormalities that needed regular appointments.

‘Nothing they could do’

“I had a new GP and I explained the situation – that the rooms were too small for my wheelchair to fit in and there was no hoist or wide bed for me to use,” she said.

“I also would need two nurses to help hold my legs, which can flop over.

“I can’t be the only female disabled person who comes to this surgery and needs a smear test,” she told them.

“But they said there was nothing they could do – and that went on for 10 years.”

Kerry recently managed to get a hospital appointment to be checked but, because of the delay, she was then told she would need numerous tests under general anaesthetic – and, because of her condition, she would have to spend 24 hours in a high-dependency ward.

“I had to put a brave face on it but I was angry and emotionally drained,” she said.

In the UK, there are 13.9 million people with a disability – about 56% are women and most have impaired mobility.

While the charity acknowledged many examples of good care,Ā its reportĀ – based on an online survey of 335 women with a physical disability – says disability should not be a barrier to basic healthcare, such as screening.

The women featured in the report had disabilities including spinal muscular atrophy, Ehlers-Danlos syndrome, paraplegia, myalgic encephalomyelitis (ME) and cerebral palsy.

Wrong assumptions

Most cases of cervical cancer are caused by the human papilloma virus (HPV), which can be passed on through sexual contact.

But many physically disabled women said it was assumed they were not sexually active and so not at risk.

Others, including Jo Moss, who has chronic fatigue syndrome, also known as ME, and fibromyalgia complained about the lack of alternatives on offer.

“My condition means that I cannot sit or stand for more than five minutes without pain or dizziness and I am therefore unable to leave my bed,” she said.

Jo assumed it would be possible to organise a home visit for screening, as she does for dental care and injections – but she was told it was not possible.

Only after numerous letters to her GP did a nurse finally agree to a test at home – after eight years.

“It shouldn’t have taken me eight years to finally have the test nor should it be the case that you can’t access screening because of your condition or disability,” she said.

‘This must change’

Cervical screeningĀ prevents 75% of cervical cancers from developing, yet screening uptake in the UK is at a 21-year low.

All women aged 25-64 should be invited for an appointment by letter.

A small sample of cells is then taken from the cervix and tested for abnormal changes that can turn into cervical cancer.

Robert Music, chief executive of Jo’s Cervical Cancer Trust, said he was “shocked by the inequality that exists in accessing cervical screening across the UK”.

“It is not acceptable that women with a physical disability are often faced with additional hurdles or even being denied access to this potentially lifesaving test,” he said.

“It is worrying to see the level of stigma that exists regarding sex and disability and this must change.”

Chairwoman of the Royal College of GPs, Prof Helen Stokes-Lampard, said there was an “urgent need” to invest in practice buildings to make them accessible for people with disabilities.

“It is vital that the forthcoming comprehensive spending review includes significant commitments to improving general practice premises,” she added.