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15
November
2025
|
02:28
Europe/London

Study exposes cancer care deficit for patients with learning disabilities

I鈥檇 gone to the doctor countless times with back pain but I found it hard to explain how bad it was. The pain scale didn鈥檛 mean anything to me and when I was asked if I could walk about as normal, I struggled to convey that sometimes I鈥檇 be fine, other times I鈥檇 be curled up in agony

Annabell Downey,

We already know that people with a learning disability face poorer health outcomes, but the burden of cancer in this population is poorly understood. That is why this study, the most comprehensive population-based investigation of cancer in people with a learning disability, is so crucial to understand the immense challenges this vulnerable population group face in cancer care

Dr Oliver Kennedy

People in England with a learning disability have a higher risk of cancer, especially before age 50 , according to a study by researchers from 黑料网吃瓜爆料 and The ChristieNHS Foundation Trust . 

Their symptoms are investigated less often, they receive less treatment, and have a poorer prognosis according to the study funded by the National Institute for Health and Care Research (NIHR) Greater 黑料网吃瓜爆料 Patient Safety Research Collaboration (GM PSRC). 

The results of the most comprehensive investigation ever carried out 鈥 using huge national datasets - are published today (insert date) in the journal The Lancet Regional Health 鈥 Europe. 

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. 

According to the study, people with learning disabilities were about half as likely to be referred for urgent investigation when they had 鈥榬ed flag鈥 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 syndrome, with most dying within four years of diagnosis compared with nine years among those without a learning disability. 

The study found that several cancers were more common among people with learning disabilities. Rates of sarcoma were around twice as high, cancers of the central nervous system were three and a half times higher, testicular cancer was twice as high, and uterine cancer was about 70% higher compared with the general population. 

While some cancers, including melanoma, breast and prostate cancer were less common among people with learning disabilities, those affected had up to a fourfold higher risk of death after diagnosis, highlighting possible delays in diagnosis and inequities in access to timely and effective treatment. 

The research team also found that people with learning disabilities were over 70% more likely to develop cancer before the age of 50. This pattern was especially strong 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. 

Lead author Dr Oliver Kennedy, Clinical Lecturer at 黑料网吃瓜爆料 and The Christie said: 鈥淲e already know that people with a learning disability face poorer health outcomes, but the burden of cancer in this population is poorly understood. 

鈥淭hat is why this study, the most comprehensive population-based investigation of cancer in people with a learning disability, is so crucial to understand the immense challenges this vulnerable population group face in cancer care.

 鈥淭here is an urgent need for effective strategies to improve cancer detection and care鈥 

Principal Investigator Prof Darren Ashcroft from 黑料网吃瓜爆料 is Director of the NIHR Greater 黑料网吃瓜爆料 Patient Safety Research Collaboration (GM PSRC)   

He said: 鈥淧eople with a learning disability frequently encounter barriers to healthcare access, such as communication difficulties and  diagnostic overshadowing, where clinicians might attribute new symptoms to an existing diagnosis instead of investigating other possible causes. 

鈥淭hese contribute to poorer health outcomes in general. On average, adults with a learning disability die 19鈥23 years earlier and it is widely accepted that 42% of deaths are considered preventable. 

鈥淭his study highlights critical gaps and persistent uncertainties in cancer care for people with a learning disability that merit further investigation.鈥 

 

Dr Kennedy added: 鈥淲e suspect many people with learning disability experience missed opportunities for earlier diagnosis given the reduced likelihood of urgent suspected cancer referral following red-flag symptoms.

鈥淭his was probably why more cancers were diagnosed outside the urgent suspected cancer referral pathway, and more frequently at an advanced stage.

鈥淏arriers such as lack of staff training, communication challenges and inflexible appointment systems may also contribute to these disparities.鈥

Jon Sparkes OBE, chief executive of learning disability charity Mencap, said: 鈥淲e already know that cancer is the second most common cause of avoidable death amongst people with a learning disability.

鈥淚t鈥檚 unacceptable that late diagnosis and lack of urgent referral for treatment is costing people with a learning disability years of life.

鈥淢elanoma, breast and prostate cancer are eminently treatable, yet people with a learning disability are four times more likely to die of them even after diagnosis. There鈥檚 something deeply wrong when people die for want of proper screening or treatment.

鈥淭he NHS must do better, with priority screening at a younger age and urgent referral for people with a learning disability, who we know are at greater risk of certain cancers.鈥

CASE STUDY:
Annabell Downey, supported by Mencap in Hexham, Northumberland has terminal cancer. She said:

鈥淚鈥檇 gone to the doctor countless times with back pain but I found it hard to explain how bad it was. The pain scale didn鈥檛 mean anything to me and when I was asked if I could walk about as normal, I struggled to convey that sometimes I鈥檇 be fine, other times I鈥檇 be curled up in agony.

鈥淎nd, though I鈥檇 had for some time, I didn鈥檛 realise it might be related.

鈥淪omeone without a learning disability might volunteer that information, questioning if there was a link 鈥 but it didn鈥檛 occur to me. No one ever asked if I had pain elsewhere until I was in hospital.

  • The paper 鈥楥ancer diagnoses, referrals, and survival in people with a learning disability in the UK: a population-based, matched cohort study鈥, published in Lancet European Health is available here  DOI 10.1016/j.lanepe.2025.101519

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