Thousands of disabled women are being blocked from accessing potentially lifesaving smear tests, putting them at risk of cervical cancer, a disturbing report has revealed.
Patients with mobility problems say GP surgeries have been unable to carry out home visits to perform the vital screening.
Some women have waited decades to get the test, which should have been carried out every three years in their cases.
Clinics have not had the equipment needed to help disabled women out of their wheelchairs and on to the examination table, meaning nurses turn them away.
Some women have waited decades to get the test (pictured, stock image), which should have been carried out every three years in their cases
Disabled women have also been asked by staff to sign waivers stating they do not want to have a smear test – even though they did want one – because it proved too complex to arrange.
Others were told by doctors that cervical cancer is not something they need to worry about – because ‘disabled people are not sexually active’.
These shocking stories, detailed in a new report by Jo’s Cervical Cancer Trust, may be just the tip of the iceberg. According to research by the charity, almost two-thirds of women with physical disabilities have been unable to attend screening as a result of their condition.
There are 13.9 million Britons with a disability, of whom 56 per cent are women. More than half of them report a mobility impairment – so the charity fears the numbers affected could run into the thousands, or more.
Of the 335 disabled women surveyed, one in five said they needed a hoist to help them on to the examination bed and into a correct position. But only one per cent said this equipment was available at their GP surgery.
All UK women aged 25 to 64 years old are eligible for cervical screening, which checks for abnormal changes in cells in the cervix caused by certain strains of human papillomavirus (HPV), and should receive automatic invitations. Women under 50 are screened every three years, and those over every five years.
HPV – usually transmitted through sexual contact – is common, but around 13 high-risk types have been linked to the development of cervical cancer.
Kerry Thompson, 40, from Milton Keynes, waited more than a decade for a smear test as a result of her disability. Diagnosed with muscular dystrophy when she was 24, a condition which causes the muscles to waste away, she had to begin using a wheelchair four years later.
‘I’d always managed to get to my GP before for my smear tests,’ she said. ‘But it became too difficult as I couldn’t put my knees up and needed hoists to keep my legs on the bed and someone to help hold me in place.
‘My GP surgery was brilliant – the practice nurse arranged to do the smear tests for me at home.’
All UK women aged 25 to 64 years old are eligible for cervical screening (pictured, stock image), which checks for abnormal changes in cells in the cervix caused by certain strains of human papillomavirus (HPV), and should receive automatic invitations
But when she later moved house, her new practice said a home visit would not be possible – despite an earlier result showing Kelly had cells that needed to be monitored. Nor did they have the hoist or equipment to examine her at the surgery.
‘It was a nightmare,’ she said. ‘They kept saying I could only have it if I came in.’
More than a decade after her abnormal result, having not been screened since, Kerry was referred to a hospital specialist. But because she had been forced to wait so long, she had to undergo a biopsy under general anaesthetic.
‘I was worried I could have cervical cancer,’ she said. ‘Up to then, I had to block that thought out.’
Luckily, Kerry’s results came back clear. But her story is not unique. Many disabled women say they have only been able to access cervical cancer screening because their partner has lifted them on to the examination bed.
And one woman, denied screening since 1994, told the Trust she had repeatedly been asked to sign a waiver saying she did not wish to have the test – something she refused to do.
Stigma around sex is also a big obstacle. According to the Trust, one in five disabled women say healthcare professionals assume they do not have sex. One was told by a doctor it was ‘obvious’ she was not sexually active’.
Kerry believes the barriers and misconceptions around cervical screening for disabled women need to be addressed. ‘The NHS campaigns for more women to have smear tests and warns against missing them, but it doesn’t have provisions for disabled women like me,’ she said. ‘By making me wait so long, they were playing with my life.’