The Learning Disabilities Mortality Review (LeDeR) programme 1 1

Covered in this presentation Information about the Learning Disability Mortality Review (LeDeR) programme Overview of LeDeR methodology Key findings to December 2017 Contact details and additional sources of information Mencap (2007) Death by Indifference’ told the stories of six people who died whilst in the case of the NHS. They used the term ‘institutional discrimination’ to describe the treatment that they received. Michael (2008)‘Healthcare for All’ Commissioned by DH to explore the wider issue of access to healthcare for people with learning disabilities. Michael reported that he was shocked to discover that the experiences of the families described in Mencap’s report were by no means isolated and the report described some appalling examples of discrimination, abuse and neglect across the range of health services. Parliamentary and Health Service Ombudsman (2009) ‘Six Lives’ report detailed the investigations into the complaints made by Mencap on behalf of the six families. In one case the Ombudsman concluded that the death of the person concerned occurred as a consequence of the service failure and maladministration identified. In one case it was concluded that it was likely the death of the person could have been avoided, had the care and treatment provided not fallen so far below the relevant standard. In four of the six cases the complaint was upheld that the person concerned was treated less favourably in some aspects of their care and treatment for reasons related to their learning disabilities. Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) (2013) CIPOLD reported that for every one person in the general population who dies from a cause of death amenable to good quality care, three people with learning disabilities will do so. 2 2

Introduction to the Learning Disability Mortality Review (LeDeR) programme

Background Department of Health (2001) Valuing People Mencap (2004) Treat me right Mencap (2007) Death by Indifference Michael (2008) Healthcare for All Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) (2013) Mazars report (2015) Each of these reports has documented the failures of health and social care services to comply with equalities legislation, and has highlighted widespread poor healthcare provision for people with learning disabilities. Mencap (2007) Death by Indifference’ told the stories of six people who died whilst in the case of the NHS. They used the term ‘institutional discrimination’ to describe the treatment that they received. Michael (2008)‘Healthcare for All’ Commissioned by DH to explore the wider issue of access to healthcare for people with learning disabilities. Michael reported that he was shocked to discover that the experiences of the families described in Mencap’s report were by no means isolated and the report described some appalling examples of discrimination, abuse and neglect across the range of health services. Parliamentary and Health Service Ombudsman (2009) ‘Six Lives’ report detailed the investigations into the complaints made by Mencap on behalf of the six families. In one case the Ombudsman concluded that the death of the person concerned occurred as a consequence of the service failure and maladministration identified. In one case it was concluded that it was likely the death of the person could have been avoided, had the care and treatment provided not fallen so far below the relevant standard. In four of the six cases the complaint was upheld that the person concerned was treated less favourably in some aspects of their care and treatment for reasons related to their learning disabilities. Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) (2013) CIPOLD reported that for every one person in the general population who dies from a cause of death amenable to good quality care, three people with learning disabilities will do so. 4 4

Report from sister of a person with learning disabilities who had died The doctor came out on the Friday before she died and said he thought that she had a water infection. He said that he could either give her antibiotics or leave it. I mean what did he mean by that…leave it? (CIPOLD, 2013) Mencap (2007) Death by Indifference’ told the stories of six people who died whilst in the case of the NHS. They used the term ‘institutional discrimination’ to describe the treatment that they received. Michael (2008)‘Healthcare for All’ Commissioned by DH to explore the wider issue of access to healthcare for people with learning disabilities. Michael reported that he was shocked to discover that the experiences of the families described in Mencap’s report were by no means isolated and the report described some appalling examples of discrimination, abuse and neglect across the range of health services. Parliamentary and Health Service Ombudsman (2009) ‘Six Lives’ report detailed the investigations into the complaints made by Mencap on behalf of the six families. In one case the Ombudsman concluded that the death of the person concerned occurred as a consequence of the service failure and maladministration identified. In one case it was concluded that it was likely the death of the person could have been avoided, had the care and treatment provided not fallen so far below the relevant standard. In four of the six cases the complaint was upheld that the person concerned was treated less favourably in some aspects of their care and treatment for reasons related to their learning disabilities. Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) (2013) CIPOLD reported that for every one person in the general population who dies from a cause of death amenable to good quality care, three people with learning disabilities will do so. 5 5

What we know about deaths of adults with learning disabilities Early deaths of people with learning disabilities: a 20+ year disparity (CIPOLD and GPES data) Increasing median age at death over time but little evidence of any closing of the gap in life expectancy between people with learning disabilities and the general population.

Avoidable deaths (from CIPOLD, 2013) Preventable mortality All or most deaths from that cause could be avoided by public health interventions in the broadest sense 21% Amenable mortality: All or most deaths from that cause could be avoided through good quality healthcare 13% (general population) 36.5% (learning disabilities)

LeDeR programme purpose of local reviews of deaths To help health and social care professionals and policy makers to: Identify the potentially avoidable contributory factors related to deaths of people with learning disabilities Develop action plans to make any necessary changes to health and social care service delivery for people with learning disabilities 8

LeDeR methodology 9

Key findings to December 2017 10

Findings: Demographic and other details (July 2016 – Nov 2017) Males 57%; females 43% (n=1,311) White ethnic background 93% (n=1,145) Usually lived alone 9% (n=1,158) Had been in an out-of-area placement 9% (n=1,158) Died in hospital 64%, compared with 47% in the general population (n=1,244). N=100% of responses to question 11 11

Findings: age at death Median age at death 58 years (range 4-97 years) (n=958) males – 59 years females – 56 years Over a quarter (28%) of deaths were of people aged under 50 years –compared with 5% in the general population of England and Wales aged four years and over who died in 2016. 12 12

Findings: cause of death Most common individual causes of death (n=576) Pneumonia 16% Sepsis 11% Aspiration pneumonia 9% Most common underlying causes of death Diseases of respiratory system: 31% Diseases of circulatory system: 16% Neoplasms (cancer): 10% 13 13

Findings: learning identified The most commonly reported learning and recommendations were made in relation to the need for: Greater inter-agency collaboration, including communication Greater awareness of the needs of people with learning disabilities Greater understanding and application of the Mental Capacity Act (MCA) 14 14

From learning to action We need to address the learning from individual deaths. Learning points at individual level should be taken forward into relevant service improvements as appropriate. Recommendations made by the LeDeR programme are in the 2016/17 annual report http://www.bristol.ac.uk/sps/leder/news/2018/leder-annual- report-2016-2017.html 15 15

What can you do now? Make contact with your local Steering Group and make sure that you are engaged with them Support staff to notify deaths to the LeDeR programme Support staff to contribute to reviews of deaths Support staff to be trained as a reviewer and to lead reviews Ensure that any learning and recommendations relevant to your services are being acted upon 16 16

Contact details LeDeR Bristol: leder-team@bristol.ac.uk Tel: 0117 3310686 Website: www.bristol.ac.uk/sps/leder Regional Coordinators North Maria Foster Maria.Foster2@nhs.net Midlands and East Louisa Whait Louisa.Whait@nhs.net South Robert Tunmore R.Tunmore@nhs.net London Emily Handley Emily,Handley2@nhs.net 17