A woman whose terminal cancer diagnosis was picked up late has urged people with learning disabilities to speak up if they have health concerns.
Speaking to Sky News, Annabell Downey, who has a learning disability herself, said “they can’t explain themselves properly and they don’t get listened (to)”.
Ms Downey, 52, claimed health professionals “keep thinking they’re crying wolf”.
It comes as a new study found people in England with a learning disability have a higher risk of cancer, especially before the age 50.
Their symptoms are investigated less often, they receive less treatment, and they have a poorer prognosis, according to researchers from The University of Manchester and The Christie NHS Foundation Trust.
Ms Downey said she had gone to her doctor about back pain and she found it hard to explain how bad it was.
“They kept saying it was old age, and one day I couldn’t walk and ended up getting rushed to hospital,” she said.
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“And then they found out just before my birthday that it was terminal cancer.” Her diagnosis was three years ago.
“I don’t think they’ve picked it up as quickly. I think it’s because I’ve got learning disabilities.”
‘They just kept fobbing us off’
Ms Downey, who is supported by learning disability charity Mencap, in the North East of England, said the cancer started in her breast and then escalated into her spine and shoulder.
She said she was “very angry… because I kept going and they kept saying it was old age… They just kept fobbing us off”.
She has urged people with learning disabilities to “speak up if they can and to keep going, and you will get heard”.
Ms Downey is taking chemotherapy tablets and she described her condition as “stable… at the minute, but that’s because of the medication”. She used to work on supermarket checkouts for 16 years but now is unable to work.
What did the study find?
In the study, the research team found that people with learning disabilities were over 70% more likely to develop cancer before the age of 50.
This pattern was especially pronounced for nervous system, uterine, ovarian and digestive tract cancers. Oesophageal cancer in the under-50s was more than five-fold higher in those with a learning disability.
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According to the study, people with learning disabilities were about half as likely to be referred for urgent investigation when they had ‘red flag’ symptoms that could be due to cancer.
They were more often diagnosed after the disease had spread, when cure was not possible, and were less likely to receive surgery, radiotherapy or systemic anticancer therapy.
Life expectancy after cancer diagnosis was significantly shorter, particularly among those with severe learning disability or Down’s syndrome, with most dying within four years of diagnosis, compared with nine years among those without a learning disability.
The study using linked primary care, hospital, and national cancer and death records from England, compared 180,911 individuals with a learning disability to over 3.4 million matched comparators.
The research was published in the journal The Lancet Regional Health – Europe.
