Mr L was 21 years old and had severe learning disabilities. He had a polyp removed from his stomach at Luton and Dunstable Hospital NHS Foundation Trust (the Trust). He was discharged but was readmitted the next day and had a tumour removed from his colon. Despite some improvement, Mr L’s condition worsened. After further surgery, he died a few days later.

Mr L’s parents, Mr and Mrs W, were the experts in their son’s needs, but they felt excluded from his care. They said ‘even when we kept telling the nursing staff that we thought he was worse we were ignored’. Had the consultant talked to them about discharging Mr L, they could have explained ‘that he was still feeling sick and only wanted to go home because he did not like being in hospital’. They only learnt that their son was having more surgery when he was about to go into theatre, and were not told what the surgery involved. Unaware just how ill their son was, Mr and Mrs W were not with him when he died. This greatly saddened them. They told us that ‘if the doctors had listened to our concerns and noted all the symptoms we had told them of, we feel that his colon cancer would have been diagnosed ... and this may have given him a chance of survival’.

The Trust should have taken Mr L’s learning disability into account while making decisions about his treatment, for example, by involving Mr and Mrs W or the learning disability liaison nurse. Our investigation found that the Trust did not. The consultant wrote to Mr L’s doctor saying that ‘[Mr L] was a very poor historian and I really could not tell what was going on. [He] was mentally sub-normal...’ He apologised to Mr and Mrs W for this extraordinarily inappropriate description which had understandably upset them.

The Trust took action to ensure greater involvement of families and carers in the care of patients with learning disabilities, and agreed to commission an external review of their care of such patients. They apologised to Mr and Mrs W and paid them £3,000 for the injustice caused.