"GDPR Says Yes"

(Needs editing to remove jargon) Under the Equality Act 2010, organisations have a legal duty to make reasonable adjustments to ensure that services are as accessible to people with disabilities as they are for everybody else. This duty only applies to people’s disabilities, but there is also a need to record other communication needs, e.g. the requirement for an interpreter and/or translations of written material if someone does not speak or read English. The NHS has established a Reasonable Adjustments flag, with an extremely detailed SNOMED-CT value set, to capture this information. If this is already populated in NHS systems it is possible to import it using the Reasonable Adjustments Flag API – and indeed it is a duty on NHS services, under the Accessible Information Standard, to share this information across health and social care if they have recorded it. It is unclear whether the Accessible Information Standard is intended to apply to the core business of local authority adult social care. However, it would make sense to provide for it in the design of the case management system, by including the functionality to import, record, flag and share Reasonable Adjustment flags. (Import functionality might be from the NHS via the relevant API, or from another internal system such as children’s social care, housing, or a corporate customer management system.) Systematic capture of people’s reasonable adjustment needs could also provide useful business intelligence about the needs of the wider population, for example, by identifying geographic clusters of people with similar disabilities or communication needs, which could help with demand management and forecasting or targeted interventions. Feedback from local authorities and system suppliers suggests that the NHS Reasonable Adjustments value set is far too lengthy and detailed for practical purposes, and is not fit for purpose for use by frontline staff. There would be merit in developing either a sub-set of the existing SNOMED-CT value set for use in social care, or a smaller and higher level value set which could aggregate the detailed SNOMED-CT codes into a more workable solution. (If this idea is pursued it must still be possible to import records containing the full range of SNOMED-CT codes to ensure full interoperability.) Other resources such as Experian’s Support Hub and whatweneed.support also offer useful lists of reasonable adjustment needs which have been produced by, or co-produced with, people who draw on care and support.

(Needs editing to remove jargon) Under the Equality Act 2010, organisations have a legal duty to make reasonable adjustments to ensure that services are as accessible to people with disabilities as they are for everybody else. As the duty is owed to disabled persons generally, it is an anticipatory duty which means service providers and people exercising public functions must anticipate the needs of disabled people and make appropriate reasonable adjustments. There's some anecdotal evidence of NHS staff believing that reasonable adjustments should only be recorded on the basis of a clinical diagnosis. This is at odds with the spirit of the Equality Act (if not the letter) and with practice elsewhere, where people are asked if they consider themselves disabled and if they require any reasonable adjustments. The statutory duty to make reasonable adjustments only applies to people’s disabilities. However, there is also a need to record other communication needs, e.g. the requirement for an interpreter and/or translations of written material if someone does not speak or read English. The NHS has established a Reasonable Adjustments flag, with an extremely detailed SNOMED-CT value set, to capture this information.1 If this is already populated in NHS systems it is possible to import it using the Reasonable Adjustments Flag API – and indeed it is a duty on NHS services, under the Accessible Information Standard, to share this information across health and social care if they have recorded it. It is unclear whether the Accessible Information Standard is intended to apply to the core business of local authority adult social care. However, it would make sense to provide for it in the design of the case management system, by including the functionality to import, record, flag and share Reasonable Adjustment flags. (Import functionality might be from the NHS via the relevant API, or from another internal system such as children’s social care, housing, or a corporate customer management system.) Systematic capture of people’s reasonable adjustment needs could also provide useful business intelligence about the needs of the wider population, for example, by identifying geographic clusters of people with similar disabilities or communication needs, which could help with demand management and forecasting or targeted interventions. Feedback from local authorities and system suppliers suggests that the NHS Reasonable Adjustments value set is far too lengthy and detailed for practical purposes, and is not fit for purpose for use by frontline staff. There would be merit in developing either a sub-set of the existing SNOMED-CT value set for use in social care, or a smaller and higher level value set which could aggregate the detailed SNOMED-CT codes into a more workable solution. (If this idea is pursued it must still be possible to import records containing the full range of SNOMED-CT codes to ensure full interoperability.) Other resources such as Experian’s Support Hub and whatweneed.support also offer useful lists of reasonable adjustment needs which have been produced by, or co-produced with, people who draw on care and support.

Links to "People who are important to me"

May include specific records, e.g. bankruptcy; Individual Voluntary Arrangement (IVA); Debt Relief Order (DRO). May also include information about someone's general level of debt and the impact this has on their life and their ability to cope.

Records may need to show that someone experiences or is at risk of loneliness and isolation

Someone may be digitally excluded 

• for financial reasons

• because of geographic isolation/remoteness

• because of a lack of skill or ability

• because of fear or anxiety

• because they have no interest or motivation

• because they are excluded by language barriers or disabilities

Major events, e.g. bereavement, which might affect how someone is coping in the short or longer term, or which may mean extra support is needed.

In some cases this might include anniversaries of past events.

Any other factors or circumstances which have an impact on how someone lives their life. This might include:

• Risk of abuse, including financial abuse and self-neglect (see definition for further detail) 

• Addiction to alcohol, drugs, gambling etc

• Financial literacy

• The effect of a family member or friend's needs, circumstances or actions

Health professionals who have an ongoing relationship with the person. Along with their GP (or GP practice), it might include professionals who are providing ongoing treatment.

(a) Confirmed and suspected diagnoses as held on NHS records. These should be recorded in a structured way.

(b) Self-reported health conditions which have not been formally diagnosed.

Long-term disabilities may be held as part of a social care record, a Reasonable Adjustments record, or perhaps inferred from other data (e.g. Blue Badge holder or DWP benefits records). Other records may show short-term disabilities (e.g. recovering from surgery). Records may need to indicate a fluctuating need.

Person may be registered blind/deaf, or information may be held as part of a GP/social care record, a Reasonable Adjustments record, or perhaps inferred from other data (e.g. DWP benefits records)

May be held as part of a GP/social care record or a Reasonable Adjustments record. 

Cognitive impairment may be the result of a learning disability or of a degenerative condition such as dementia.

NB cognitive function is not binary; records may need to indicate a fluctuating need.

Information may take various forms, e.g. as part of a Reasonable Adjustments record or as a flag to say the person is known to/under treatment by a MH team

Note that mental capacity is not a binary thing - records may show that the person has had (or lacked) mental capacity at a certain time in relation to a ceertain decision, but this mustn't be used to infer a generic lack of capacity. Records of mental capacity will generally be held by health and social care systems, but may well be relevant to the person's other interactions, eg housing or welfare advice.

Important to understand if needs fluctuate

EHRC's statutory guidance on making reasonable adjustments states that it's not the condition that matters, it's the effect it has on your life. 

Useful for hospital admission (notifying care providers) and discharge (what's already in place and could be reactivated?), and possibly for other purposes.

It's helpful to know what care technology is already in place, e.g. at hospital discharge when this might help identify any additional/different tech needed.

Essential when someone is moving between hospital settings; useful in other contexts too

There's value in having this data available to social workers for an annual review of care and support (or for needs assessment if no care and support already in place). It might also be helpful at hospital admission (to provide additional history about how someone has been coping at home).

There's value in having this data available to social workers for an annual review of care and support (or for needs assessment if no care and support already in place). It might also be helpful at hospital admission (to provide additional history about how someone has been coping at home) and discharge (to ensure any hazards and risks in the home are properly mitigated).

Important for hospital discharge, e.g. if the home is too cluttered for the person to move around easily/safely. May also suggest care and support needs and/or a safeguarding issue (hoarding) in its own right. Might be captured in a Care Act assessment, in care workers' notes, or via a Safe and Well visit from the Fire and Rescue Service - and may be helpful to a firefighter attending a 999 call.

Disabled Facilities Grant and/or occupational therapists may have records

Disabled Facilities Grant and/or occupational therapists may have records

Many of the other headings refer to elements of risk, but this data item should cover flags like "Visit in pairs" which may be held by planning enforcement, community safety etc.

In general, property-specific hazards and risks are poorly communicated between services. One approach might be to have a hazard/risk flag, with contact details of the person/team/service who holds details, so anyone needing to visit the property can be given whatever detail they legitimately need and are entitled to.

This might be a high priority data item for the "digital firebox", as the details about the risk could be kept secure but immediately available in casses of legitimate need.