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Definitions from
Discussion
The glossary includes a number of comments made by stakeholders during the initial engagement and discovery work.
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Address
Project team
The FHIR value set is defined as "the designated 'entire code system' value set", but it doesn't reflect the details in the NHS Data Dictionary's value set.
The NHS Data Dictionary value set doesn't allow for the flagging of a previous address which defines ordinary residence, e.g. a former home address in Local Authority A where someone has moved permanently into residential care in Local Authority B, but Local Authority A remains responsible for their care and support.
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Adult placement
Project team
The definition of Care worker in NICE Guideline NG67 (Managing medicines for adults receiving social care in the community) refers to "Shared Lives Scheme (formerly Adult Placement Scheme)"
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Approved clinician
Project team
Who are the "person[s] or bod[ies] exercising the approval function of the secretary of state" in respect of Approved Clinicians?
What is the difference between Approved Clinicians and AMHPs? Presumably the AMHP role relates to a decision to section, and the AC role relates to management of the person's case once they have been sectioned.
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Assessment
Stakeholder discussions
A local authority needs assessment (or care and support needs assessment) focuses on the eligibility criteria set out in the Care Act. A care provider may also carry out their own assessment to identify the details of a person's wishes and needs for care and support.
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Assessment
Project team
Where does the term "Community care assessment" come from? Assessments can be referred to as assessment, needs assessment, local authority needs assessment, care and support needs assessment, Care Act assessment (plus specific terms such as combined assessment, joint assessment, mental capacity assessment, OT assessment etc) - see link below - but 'Community care assessment' doesn't appear anywhere other than here.
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Assistive technology
Stakeholder discussions
There is widespread confusion over the specific meanings of terms used in the Care Technology sector (Telecare, Tech Enabled Care, Care Tech, Assistive Tech, Telehealth, Telemedicine etc). There is an urgent need for a clear set of definitions covering (a) the different types of care tech (reactive vs preventative/predictive), (b) the distinction between technological products and physical aids, (c) the level of proactive input required from the care recipient.
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Buyer
TEC stakeholders
Confusion around the terms commissioner, buyer, service user, customer (as used in the TEC sector) can arise because (eg) a local authority is a buyer in some transactions, a commissioner in others, and a provider in still others.
Need to establish a terminology that clearly identifies roles within the TEC sector:
- Commissioner of services (eg LA)
- Buyer of services (eg a residential home)
- Equipment supplier
- Telecomms provider
- Service provider - assessment
- Service provider - installation and maintenance
- Service provider - monitoring
- Service provider - response
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CASSR Code
Project team
CASSR/Local Authority codes are maintained by NHS Digital's Organisation Data Service (ODS). Most codes are three-digit numeric, but codes issued since 2021 have been five-character alphanumeric (ANANA). They are used exclusively in the NHS, and differ from the nine-character local authority codes maintained by the Government Statistical Service (GSS), which are part of a definitive national code list used throughout government (https://geoportal.statistics.gov.uk/datasets/ons::lower-tier-local-authority-to-upper-tier-local-authority-december-2022-lookup-in-england-and-wales/explore).
The Office of National Statistics (ONS) advised in 2011, when the GSS coding and naming policy for some statistical geographies was implemented on January 1st, that the new codes should be used in all exchanges of statistics and published outputs that normally include codes. (See https://www.get-information-schools.service.gov.uk/Guidance/LaNameCodes.) However, the NHS and the Department for Education both continue to use their own (different) three-digit codes for most internal purposes.
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Capacity
Stakeholder discussion: social worker with an integrated hospital team background
A person's mental capacity may fluctuate over time and may vary depending on the decision to be made. This isn't always understood or recognised by health professionals, although the definitions here are reasonably consistent about it. This can lead to people being inappropriately prevented from making decisions which they do have the capacity to make.
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Capacity
Project team
The definition in NICE Guideline NG67 refers to "the Department of Health's advice on consent". There is a 2009 document entitled "Reference guide to consent for examination or treatment (second edition)" which appears to be the most recent guidance available.
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Care Technology
Stakeholder discussions
There is widespread confusion over the specific meanings of terms used in the Care Technology sector (Telecare, Tech Enabled Care, Care Tech, Assistive Tech, Telehealth, Telemedicine etc). There is an urgent need for a clear set of definitions covering (a) the different types of care tech (reactive vs preventative/predictive), (b) the distinction between technological products and physical aids, (c) the level of proactive input required from the care recipient.
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Care provider
Stakeholder discussions
The Digitising Social Care Glossary definition of "Care provider" is based on the NHS Data Dictionary definition of "Health Care Provider". This is not an accurate definition of the full scope of care providers registered with the CQC.
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Care team
Care provider
The NICE definition of "Health and social care practitioners" is the closest description of the Care Team as envisaged in MODS. However, these people seldom if ever constitute an actual team. A team would imply at the very least co-ordination of effort and a common line of accountability to a single manager. This does not happen in respect of the way professionals and unpaid carers provide care and support to an individual.
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Carer
Stakeholder discussions
Does "carer" disempower or stigmatise the person being cared for? Is the "carer" actually a support person, someone who has your back? "I don't think of her as a carer, she's my wife, I'd do exactly the same for her".
Likewise, is "carer" always the best way to refer to the person providing care and support, and is it a term they use or recognise about themselves? "I'm not a carer, I'm his mum."
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Carer
Project team
The definition in the ASC Collections Data Dictionary is based on the Carers and Disabled Children Act 2000, which has now been repealed.
In its use of the phrase "a SUBSTANTIAL AMOUNT of care on a REGULAR BASIS", it replicates the definition in the NHS Data Dictionary (see hyperlink), which references the Carers (Recognition and Services) Act 1995 (see second hyperlink). The latter Act applies only to care provided to children in specified circumstances relating to mental health or disability.
The phrase "a SUBSTANTIAL AMOUNT of care on a REGULAR BASIS" is inconsistent with the Care Act definition.
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Carer assessment
Project team
The definition from the Digitising Social Care Glossary v0.0.3 is inaccurate in three respects, in that a carer's eligibility for assessment isn't contingent on:
- Them providing care for a 'substantial amount of time' - there is no minimum amount of time that they have to be providing care for (this appears to reference the definition of carer in the ASC Collections Data Dictionary, based on the Carers and Disabled Children Act 2000, which has now been repealed)
- Whether or not the person they are caring for has refused an assessment
- Whether or not the person they are caring for is receiving help from social care
The only eligibility criterion for a carer's assessment is that you have to be 'an adult who provides or intends to provide care for another adult' (Care Act 2014, S.10(3)), and you cannot provide or intend to provide said care '(a) under or by virtue of a contract, or (b) as voluntary work' (S.10(9), but see S.10(10) for exceptions).
Whilst it is true that assessments are "available to both carers and young carers", young carer assessments are managed differently from those for adult carers - see the Care and Support (Assessment) Regulations 2014, reg 4(3), and Care and Support Statutory Guidance, paras 6.69-6.73
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Clinician
Stakeholder discussions
Dictionary definitions of 'clinician' (and everyday usage) imply a professional qualification in health rather than social care. However, the definitions of 'approved clinician' and 'responsible clinician' imply that mental health social workers can be accredited as such. Can clarity be found about whether 'clinician' includes social care professionals, and if so, under what circumstances?
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Commissioner
TEC stakeholders
Confusion around the terms commissioner, buyer, service user, customer (as used in the TEC sector) can arise because (eg) a local authority is a buyer in some transactions, a commissioner in others, and a provider in still others.
Need to establish a terminology that clearly identifies roles within the TEC sector:
- Commissioner of services (eg LA)
- Buyer of services (eg a residential home)
- Equipment supplier
- Telecomms provider
- Service provider - assessment
- Service provider - installation and maintenance
- Service provider - monitoring
- Service provider - response
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Community
Stakeholder discussions
Community is often used by NHS staff to refer to community health services (as distinct from primary or secondary/acute services).
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Crisis
Stakeholder discussions
The term "crisis" is not exclusively around mental health:
- Not exclusively around "crisis response" as defined here
- Breakdown of care and support package
- Carers experiencing crisis when care needs/circumstances change suddenly
- Conversation 2
- Friends and family holding it together way beyond what they should
- See also breaking point
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Customer
TEC stakeholders
Confusion around the terms commissioner, buyer, service user, customer (as used in the TEC sector) can arise because (eg) a local authority is a buyer in some transactions, a commissioner in others, and a provider in still others.
Need to establish a terminology that clearly identifies roles within the TEC sector:
- Commissioner of services (eg LA)
- Buyer of services (eg a residential home)
- Equipment supplier
- Telecomms provider
- Service provider - assessment
- Service provider - installation and maintenance
- Service provider - monitoring
- Service provider - response
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Data glossary
Nicola Askham
The first difference between the data dictionary and the data glossary is that whilst the data dictionary is seen very much as an IT-owned document, data glossaries should be created and maintained by the business.
Some people will tell you a data glossary should be used to create a 'common' set of definitions. Now I agree that would be sensible in a utopian data world, however, the vast majority of organizations are not yet mature enough in data governance terms to dive straight into this. Instead, I encourage my clients to use the development of a data glossary to identify where there are a number of differing definitions for the same term and conversely where a number of different terms have the same definition.
Placeholder definition
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Demographic information
Project team
Basic information about a person, including their name, date of birth, phenotypic sex, gender identity, sexual orientation, ethnicity, religion, marital status, nationality, first and other languages, disabilities, etc.
Demographic information is not inherently episodic; it relates to the person rather than to any care and support they may receive or need.
Placeholder definition
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Deprivation
Project team
Deprivation can refer to a number of things:
Deprivation can be defined as the consequence of a lack of income and other resources, which cumulatively can be seen as living in poverty. (Nottingham Insight: https://www.nottinghaminsight.org.uk/themes/deprivation-and-poverty/) The Office for National Statistics produces Indices of Multiple Deprivation (IMDs) which identify relative deprivation levels throughout England.
Deprivation of Liberty Safeguards (DoLS) are the framework of safeguards under the Mental Capacity Act 2005 for people who need to be deprived of their liberty in a hospital or care home in their best interests for care or treatment and who lack the capacity to consent to the arrangements made for their care or treatment. (DoLS Code of Practice)
Deprivation of assets is defined as "when you deliberately reduce the amount of savings or property you have, in order to qualify for help from your council with paying for care costs or for various benefits" (Think Local Act Personal).
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Digital
Stakeholder discussions
Definition of 'Digital' can sometimes include telephony; this can be extremely important if it includes people who would otherwise be digitally excluded. Need to distinguish between digital tools which facilitate human interaction (eg Zoom) and digital tools which facilitate non-human interaction (eg a wellness app).
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Existing client
Stakeholder discussions
Inconsistency around how an individual is described if they've previously received a service, stopped receiving it, and subsequently come back for re-referral/reassessment. Are they new or existing clients? [Source: stakeholder discussions]
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Family of choice
Stakeholder discussions
Sometimes referred to as "Family of my own making".
The Alzheimer's Society definition appears on their website in the context of LGBTQ+ people with dementia (under the heading "Relationships LGBTQ+ people with dementia may have" - click the heading to expand it).
"Family of choice" or "Family of my own making" could presumably be applicable in other situations too.
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Functional assessment
Project team
When is this term used? How does it differ from a needs assessment?
Functional assessment appears to be a term used specifically by OTs rather than social workers.
There is a scoring tool called the UK-FIM+FAM (Functional Independence Measure + Functional Assessment Measure) which captures 30 domains of funcional capability - further research needed to see whether it is in current use.
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Impairment
Project team
Comment on TLAP definition: Impairments can be acquired rather than something you are born with (see Acquired Impairment)
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Independent mental capacity advocate
Mental Capacity Act 2005, Schedule AA1, Part 5
Part 5 of Schedule AA1 to the Mental Capacity Act makes explicit provision for an IMCA to be appointed in respect of a person subject to Deprivation of Liberty Safeguards
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Integrated assessment
Project team
CASSG paras 6.75-6.79 use 'integrated assessment' to describe the scenario of multiple agencies carrying out an assessment of one person, which is defined in para 6.3 as a 'joint assessment'.
CASSG para 15.14 uses the term 'combined assessment', but appears to describe a 'joint assessment' as defined in para 6.3 (or an 'integrated assessment' as defined in paras 6.75-6.79).
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Intermediate care
Stephen Peddie (subject matter expert)
A therapy-led approach is a signifier of the difference between intermediate care interventions and bedded or non-bedded step down interventions. Although intermediate care is free at the point of use it is very often 50/50 funded by social care, usually through the Better Care Fund, and in fact some home-based intermediate care can be fully funded by a council's ASC function. Some is fully NHS funded (more often bed-based). Intermediate care is NOT funded by a hospital. Up to 6 weeks is usual, though typical length of service is lower. Often overlooked is the utility of intermediate care to avoid an admission so intermediate care is also not only a post-acute-episode intervention. Recovery (of relative independence) or reablement is the goal of intermediate care. Most people (over 80%) leaving hospital who require an intervention on pathways 1-3 should have reablement goals achievable by either form of intermediate care - either a short term reablement-based care bed with therapeutic support, or a reablement-based domiciliary care support (often termed Home First). See https://ipc.brookes.ac.uk/files/publications/Some_key_messages_around_hospital_transfers_of_care.pdf
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Lacking Capacity
Stakeholder discussion: social worker with an integrated hospital team background
A person's mental capacity may fluctuate over time and may vary depending on the decision to be made. This isn't always understood or recognised by health professionals, although the definitions here are reasonably consistent about it. This can lead to people being inappropriately prevented from making decisions which they do have the capacity to make.
Further information
Discussion
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Local Authority Code
Project team
CASSR/Local Authority codes are maintained by NHS Digital's Organisation Data Service (ODS). Most codes are three-digit numeric, but codes issued since 2021 have been five-character alphanumeric (ANANA). They are used exclusively in the NHS, and differ from the nine-character local authority codes maintained by the Government Statistical Service (GSS), which are part of a definitive national code list used throughout government (https://geoportal.statistics.gov.uk/datasets/ons::lower-tier-local-authority-to-upper-tier-local-authority-december-2022-lookup-in-england-and-wales/explore).
The Office of National Statistics (ONS) advised in 2011, when the GSS coding and naming policy for some statistical geographies was implemented on January 1st, that the new codes should be used in all exchanges of statistics and published outputs that normally include codes. (See https://www.get-information-schools.service.gov.uk/Guidance/LaNameCodes.) However, the NHS and the Department for Education both continue to use their own (different) three-digit codes for most internal purposes.
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Local authority needs assessment
Stakeholder discussions
A local authority needs assessment (or care and support needs assessment) focuses on the eligibility criteria set out in the Care Act. A care provider may also carry out their own assessment to identify the details of a person's wishes and needs for care and support.
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Local authority professional
MODS
A professionally qualified/accredited employee of a local authority involved in the provision of adult social care, including (but not limited to) needs assessment, financial assessment, care and support planning, commissioning, needs review, financial review, and adult safeguarding. These individuals will include social workers, occupational therapists, and other professionals including finance staff.
Some local authorities are care providers in their own right, providing domiciliary or residential care. Staff in these functions would be considered to be fulfilling a care provider role, not a local authority professional role.
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Mental Capacity
Stakeholder discussion: social worker with an integrated hospital team background
A person's mental capacity may fluctuate over time and may vary depending on the decision to be made. This isn't always understood or recognised by health professionals, although the definitions here are reasonably consistent about it. This can lead to people being inappropriately prevented from making decisions which they do have the capacity to make.
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Nationality
Project team
MODS references Nationality under Care actor > Subject of care > Person demographics. It includes entries for Primary Nationality and Other Nationality, both referencing a value set which appears to include all global nationalities (source of value set undefined).
The terms Primary Nationality and Other Nationality do not appear to have any formal definition in MODS or elsewhere.
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Neglect and acts of omission
Stakeholder discussion: social worker with an integrated hospital team background
The SCIE definition includes "Preventing the person from making their own decisions". A social worker (with an integrated hospital team background) commented as follows on the definition of Capacity:
"A person's mental capacity may fluctuate over time and may vary depending on the decision to be made. This isn't always understood or recognised by health professionals, although the definitions [of Capacity in this glossary] are reasonably consistent about it. This can lead to people being inappropriately prevented from making decisions which they do have the capacity to make."
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Nursing Care
Stephen Peddie (subject matter expert)
Nursing care is a residential placement with additional nursing support. Funding is as above plus a funded nursing care component (FNC) or fully funded by the NHS in the case of CHC placements (Continuing Health Care) if certain assessed conditions are agreed (like end of life care). Nursing care does not have a therapy led approach and is not intermediate care, BUT bedded intermediate care facilities with nursing that are not on a hospital site are registered with CQC as nursing care homes.
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Outcome
Project team
Outcome is used in three different ways
- as the end result of a process (see also Event Outcome)
- as a measure of eligibility for care and support (see Eligibility Outcome)
- as a positive change in someone's life, an aim or objective they would like to achieve or need to happen (see also Desired Outcomes)
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Personal budget
Project team
Statutory definitions in the Care Act and CASSG, and DHSC definition in the Charging Reform MVP document, all state that the personal budget INCLUDES the amount which the individual contributes, i.e. the full cost of care and support at LA rates. The NE Lincs and TLAP definitions state that the PB is fully funded by the LA, implying that it EXCLUDES the individual's contributions.
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Personality disorders
Stakeholder discussions
Valid clinical term, but some people find it derogatory. Lots of stigma associated with it; lots of assumptions that come with the language which are sometimes wrong. Police might describe someone with challenging behaviour as having a personality disorder, but this isn't a clinical diagnosis. [Source: stakeholder discussions]
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Preferred contact method
Project team
The FHIR value set doesn't allow for preferences to be captured - it is a list of number types rather than a record of an individual's preference. The value set also appears to be intended for business to business communication, e.g. use of a work number is preferable to home and mobile numbers.
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