People with learning disabilities had died after not having routine cancer screening, a health board was told yesterday (Tuesday 3 March).
Two case studies told the stories of two women who could have been treated had they undergone screening for cervical cancer in one instance and breast cancer in the other.
Their stories were shared with members of Brighton and Hove City Council’s Health and Wellbeing Board at Hove Town Hall.
NHS Sussex, the integrated care board (ICB) for the area, said that lessons had been learnt about the need to improve support and access to cancer screening for people with learning disabilities.
The ICB said that work was under way with the Cancer Alliance to support those who needed help with screening.
A report published before the meeting told the story of a 66-year-old woman identified as Deirdre who lived in a care home and had a history of serious mental illness had not attended any cervical screening.
She had type 2 diabetes, abdominal swelling and constipation and “didn’t want to make a fuss”. But after two years of medical appointments, she had late-stage abdominal, ovarian and umbilical cancer diagnosed.
A review after her death found that there were issues around recognising her deterioration and a delayed diagnosis with missed opportunities in annual checks.
Another woman, identified as Janet, also 66, had a severe learning disability and lived in a residential home. She had a lump in her breast in 2022, which turned out to be breast cancer. She died months later.
In 2010, Janet had been found to be “not suitable” for a mammogram because she would not co-operate. Again, in 2012, a mammogram could not be completed.
Her case was examined as part of a process known as “learning from the lives and deaths of people with a learning disability and autistic people” (LeDeR).
NHS Sussex’s director of joint commissioning and integrated community teams in Brighton and Hove, Tanya Brown-Griffith, said: “We have now had widespread roll-out of the ‘stop, look and care’ training to improve early identification in care and care settings.
“We have been working with service providers around targeted work for screening, particularly looking at cancer screening and working with the Cancer Alliance in terms of ensuring the service is very accessible for those with learning difficulties, disabilities and characteristics of autism.”
The report said that almost 42,000 people out of 1.8 million living in Sussex had a learning disability. There were also about 7,200 autistic people without a learning disability in the area.
In 2024-25, the LeDeR programme was notified of 158 deaths, 20 more than the previous year, ranging in age from 19 to 91.
The report concluded: “Health inequalities for people with a learning disability and autistic people remain.”
