Patient Safety, Health Quality and Learning Disability

By John Tingle

Tragic stories of mental health care failings leading to injury and in some cases death have featured strongly in the English media in recent years. The reports reveal common threads such as poor resources, inadequate staffing levels, limited service availability, poor inter-agency cooperation, poor patient engagement, poor understanding of the Mental Capacity Act 2005 and so on. This care area seems to largely remain a Cinderella health care service provision, existing in the shadows, with the focus being predominantly on physical acute care. There are however now welcome and firm Government commitments to drive improvement into mental health care supported by a raft of promising initiatives.

When patient stories of learning disability and autism care failings are read from several reference sources a picture emerges. Care for people with learning disability and autism can be seen to share many of the patient safety and health quality problems that beset patients who are classified as being mentally ill:

Some reference sources

Mencap, a UK charity for people with a learning disability.

The Care Quality Commission (CQC), the independent regulator of health and social care in England.

LeDer (The Learning Disabilities Mortality Review Programme).

The LeDer Annual Report
The Learning Disabilities Mortality Review (LeDer) programme supports local areas to review the deaths of people with learning difficulties’. LeDer’s work identifies lessons and learning from the deaths and takes this into service improvement initiatives. Recommendations are made from completed reviews. LeDer have recently published their annual report which contains a detailed real-time view of the health care quality for people with learning disabilities. Whilst there are some positive findings made in the report about health care provision in this care area there are also some negative findings which echo findings made in many other reports such as those by the CQC.

Some figures
The report states that there is a higher mortality rate in England for people with learning disabilities: “Today, people with learning disabilities die, on average, 15-20 years sooner than people in the general population, with some of those deaths identified as being potentially amenable to good quality healthcare.” (p5). The median age at death of people with learning disabilities was 58 years. For males it was 59, females 56. The report states this higher mortality rate is both an outcome of health inequalities, and a health inequality itself. From 1st July 2016 to 30th November 2017, 1311 deaths were notified to the LeDer programme with over half of the deaths, 57% being men. Most people who died were unmarried, (96%). In terms of ethnicity, almost all the deaths reported were from a white ethnic background (93%). Younger people with learning difficulties were more likely to die in hospital than older people. 67% of those aged 24 and under dying in hospital compared to 63% of those aged 65 and older.

Care Quality
A positive finding is made in the report on care quality with almost half (44%) of reviewers assessing the care provided to the person who died as excellent, 35% rated the care as good, 12% satisfactory. In 13% of cases reviewers said that a person’s health had been adversely affected by one of the following:

  • delays in care or treatment
  • gaps in service provision
  • organisation dysfunction
  • neglect or abuse: (p 23)

LeDer gives a number of overall themes identified as learning points or recommendations.

The story of failures and lapses in the care of the mentally ill and those people with learning disabilities is likely to continue as the NHS struggles to balance its books with finite resources. Physical health care services do seem to have had the better deal over the years with resources .Times are changing with the Government’s positive desire and commitment to put things right and there is raft of initiatives in both mental health and learning disability to do this.

John Tingle

John Tingle is a regular contributor to the Bill of Health blog. I am a Lecturer in Law, Birmingham Law School, University of Birmingham, UK; and a Visiting Professor of Law, Loyola University Chicago, School of Law. I was a Visiting Scholar at Harvard Law School in November 2018 and formerly Associate Professor at Nottingham Law School, Nottingham Trent University in the UK. I have a fortnightly magazine column in the British Journal of Nursing where I focus on patient safety and the legal aspects of nursing and medicine. I have published over 500 articles and a number of leading texts in patient safety and nursing law. My current research interests are in global patient safety, policy and practice, particularly in African health care systems. My most recent publication is: "Global Patient-Safety Law Policy and Practice," edited by John Tingle, Clayton O'Neill, and Morgan Shimwell, Routledge 2018.

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