An investigation into the deaths of people with learning disabilities has revealed they were “less likely” to have mistakes in their care “picked up”.

Oxfordshire Clinical Commissioning Group reviewed all the deaths of people with learning disabilities receiving care commissioned by the CCG between April 2011 and March 2015.

The review was in response to recommendations in the 2015 Mazars report, which said all deaths of people with mental health or learning disabilities should be investigated if they received care from Southern Health Foundation Trust.

The CCG found people with learning disabilities were no more likely to experience “errors or omissions” in their care but it was “clear that when they did they were less likely to be picked up”. The CCG’s report also said the “late identification of health needs was clearly identified” by the review and “sometimes people were not being referred to services when they should have been”.

The CCG put this down to a “lack of care coordination” across multiple agencies – meaning people with a learning disability were often reliant on their families to coordinate care – and care staff not having the “right level of skill to support” the person being looked after.

It found it was “much more difficult” for people without family to receive coordinated care and a “number of cases [where] no one held a complete picture” of the patient’s care. The investigators did not find any next of kin details for 60 per cent of the people whose deaths were investigated. While all identified next of kin were informed by letter about the investigation, a “large number did not reply”.

The CCG also raised concerns about the skills of support workers. Recruiting and retaining the right support workers with the skills to spot and respond to health issues was “extremely challenging”, it said. The review concluded it was “essential that workforce development is undertaken to support the future of the service for people with a learning disability”.

The review also found:

  • There has been a “development in practice” in the way care for people with a learning disability is provided but “it cannot be claimed there has been a complete culture change”.
  • There was a “theme of families being seen as a problem” with some families “fearful of complaining” and others “perceived by services as difficult” when they were trying to support a relative.
  • People placed out of area “may receive care of a lesser quality” as they appeared to receive less frequent reviews and it was unclear what responsibility the local council had for assuring the quality of care
  • Mental capacity assessments were “lower than [the reviewers] would expect” and the routine use of the Mental Capacity Act “requires a cultural shift [that] will take some time”.

The review found 106 deaths of people with a learning disability occurred during the four years and 40 of those needed further investigation. Of these 40, 60 per cent were of people who had died in hospital and 16 of these had pneumonia listed as a cause of death on their death certificate. Four had epilepsy listed.

After the review finished, one death was referred to the adult safeguarding board and a full safeguarding adult review may still be undertaken.

The CCG has committed to:

  • developing a workforce plan to develop a high skilled workforce;
  • put in place enhanced scrutiny of out of area placements; and
  • implement full annual health checks for people with a learning disability.

It also said a single multiagency care plan is “essential”.

Oxfordshire has also set up a vulnerable adults mortality subgroup of its adult safeguarding board to review all future deaths of people with a learning disability.