Terms and acronyms used

ADASS – The Association of Directors of Adult Social Services

AHC – annual health check. This is offered to anyone aged over 14 who has a learning disability or is autistic and are important for maintaining health and wellbeing.

AHSN – Academic Health Science Networks. There are 15 AHSNs, set up by the NHS in 2013 to help the service with innovations to improve healthcare.

Autism – Autism diagnostic criteria includes: differences in social communication and interaction, highly focused interests or behaviours that appear to others as repetitive or restricted and, challenges with sensory hyper-or-hypo-sensitivity.

CCGs – clinical commissioning groups. These were clinically led statutory NHS bodies responsible for planning and commissioning healthcare services locally. They have now been replaced by ICSs under the Health and Care Act 2022.

CTR - care and treatment review. A meeting about an adult who has a learning disability or is autistic and who is either at-risk of being admitted to, or is currently detained in, an in-patient (psychiatric) service.

CETR - care, education and treatment review. A review that focuses on children and young people who either have been admitted or may be about to be admitted to a specialist mental health / learning disability hospital.

DHSC – The Department of Health and Social Care. The ministerial department that supports ministers in leading the nation’s health and social care to help people live more independent, healthier lives for longer

DNACPR – do not attempt cardiopulmonary resuscitation. A DNACPR (or a ‘DNR’ or a ‘DNAR’) is an advance decision not to attempt cardiopulmonary resuscitation should a person experience cardiac or respiratory arrest.

Diagnostic overshadowing – where a person’s symptoms of physical ill health are mistakenly attributed to either a mental health/ behavioural problem or as being inherent – i.e. exist because of - the person’s learning disability.

EHCP – education and health care plan. An EHCP document sets out the education, healthcare and social care needs a child or young person needs beyond what a school can offer.

Health action plan - as part of a patient’s annual health check (AHC), GP practices are required to produce a health action plan. This identifies the patient’s health needs, what will happen about them (including what the patient needs to do), who will help and when this will be reviewed. The plan includes any key action points agreed during the AHC.

ICB – integrated care board. Every integrated care system (ICS) is led by an NHS integrated care board, an organisation with responsibility for NHS functions and budgets, and an integrated care partnership (ICP), a statutory committee bringing together all system partners to produce a health and care strategy. As ICBs are now legally established, CCGs have been abolished.

ICP – integrated care partnership. Statutory committees with representation from local government, the voluntary, community and enterprise sector (VCSE), NHS organisations and others who develop a health and care strategy for an area.

ICS – integrated care system. A group of health and care organisations which come together to improve the health of people in their area. There are 42 integrated care systems in England.

JCVI – joint committee on vaccination and immunisation. This committee advises UK health departments on immunisation and effective implementation of immunisation strategies to prevent infections and/or disease.

LACs – local area contacts. The LeDeR LAC role now sits within an ICB. LACs promote LeDeR learning at local level and across health and social care, they work with the LeDeR review team (who carry out LeDeR reviews into the death of a person with a learning disability or autism which was notified to the programme), and they also act at the contact person for the LeDeR regional coordinator. 

Learning disability – A learning disability affects the way a person understands information and how they communicate. This means they can have difficulty understanding new or complex information, learning new skills and coping independently.

LeDeR – Learning from lives and deaths – People with a learning disability and autistic people is a service improvement programme which aims to improve care, reduce health inequalities and prevent premature mortality of people with a learning disability and (from 2021) autistic people by reviewing information about the health and social care support people received. It is funded by NHS England.

LeDeR review – a LeDeR review looks at the health and social care that a person who died who had a learning disability or was autistic received that may have been relevant to their overall health outcomes. Reviews are not investigations or part of a complaints process.

NHS England – formerly NHS England and NHS Improvement – since April 2019 NHS England have worked as a single organisation to support the NHS and deliver improved care. On 1^st July 2022 we became NHS England. In this report we have used NHS England to include activity carried out under the auspices of NHS England and NHS Improvement.

NHS Pathways - NHS Pathways is a clinical tool used for assessing, triaging and directing the public to urgent and emergency care services.

NHS Spine – this supports the information technology (IT) systems for health and social care in England, linking more than 23,000 systems in 20,500 organisations.

OHID – The Office for Health Improvement and Disparities – a government unit within the Dept. of Health and Social Care which promotes public health improvements across England. The role of Public Health England (PHE) moved to OHID in October 2021.

Restore2 and Restore2™ mini – Recognise early soft signs, take observations, respond, escalate; tools used to identify deterioration in health.

SEND – special educational needs and disability. A child or young person has special educational needs and disabilities if they have a learning difficulty and/or a disability that means they need special health and education support.

Social prescribing – this is when health professionals refer patients to support in the community, to improve their health and wellbeing.

SUDEP – the sudden, unexpected death of someone with epilepsy, who was otherwise healthy.

Task and finish group – a group of people who are responsible for delivering a specific objective within an agreed timeframe; they report back to a wider group with any recommendations, action plan or evaluation.

UKHSA - the UK Health Security Agency. This is a government agency in England and has been responsible for public health protection and infectious disease capability since April 2021 when it replaced Public Health England. It is an executive agency of the Department of Health and Social Care.