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We know that for people with learning disability, this is a life-long condition, and also that it is not associated with long life. Adults with learning disability (intellectual disabilities), have the triad of impaired intelligence, reduced ability to cope independently (impaired social functioning), with both starting before adulthood and resulting in a lasting effect on development. An article in this Journal by Tuffrey-Wijne and colleagues explores in depth, mainly by participant observation, the experiences and needs of 13 patients who were terminally ill.1 In at least 10 of the patients the diagnosis of cancer was delayed. Better access to regular cancer screening programmes has the potential to reduce the incidence of late diagnosis in this group; people with learning disability often fail to attend offered screening services, such as mammography and cervical cytology.This study1 highlights the need for GPs to engage proactively in supporting patients and their carers, when this diagnosis is made. This will require skills in and knowledge of communication, capacity, and consent issues. The authors comment that sometimes assumptions were being made wrongly by clinicians, that the carers, whether paid or family, actually knew the understanding and wishes of the patient when the diagnosis of cancer or care arrangements were being discussed. They recommend that where there are cognitive and communication difficulties, and where the wishes and feelings of the patient cannot be gauged with certainty, rather than informally and unquestioningly accepting statements of carers, patients in this situation may benefit from assessment of their mental capacity and a ‘best interest’ meeting with probable involvement of the local specialist palliative care team. As with other aspects of the care of people with learning disability, communication difficulties may exist, whether information passes directly between doctor and patient, or via a carer, which may mean that …

Dying and living with learning disability: will health checks for adults improve their quality of life?