"GDPR Says Yes"

The preferred name field is already included in the PRSB's Core Information Standard (CIS), where it is defined as “The name by which a person wishes to be addressed. The preferred name volunteered by the person or a preferred name given by PDS that the person has asked to be called by.” It also features in About Me (How I communicate and how to communicate with me: Describe how you would like others to engage and communicate with you, including how you would like to be addressed.) 

This can be an extremely important factor in someone’s wellbeing; addressing someone by their legal/formal name when they have a preferred alternative can make them feel like a statistic in a system, and places that system at odds with an agenda of personalisation. However, it is often not recorded or shared systematically, even within the NHS, despite its presence in CIS. 

It is strongly recommended that the preferred name is systematically recorded as a separate field, and is populated as a matter of routine, even when the preferred name is the same as the legal name.

The person's preferred pronouns

Separate records will be needed for multiple addresses, e.g. a temporary address, mailing address, or previous address relating to Ordinary Residence.

May include an order of preference for phone numbers, or different call types going to different numbers. Should also include any numbers used for SMS contacts. May include numbers for friends and family which the person has asked to be used - if so, should ideally state who the number belongs to.

May include an order of preference for email addresses, or different message types going to different addresses. May include addresses for friends and family which the person has asked to be used - if so, should ideally state who the address belongs to.

(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"

Any record of a Lasting Power of Attorney which has been registered with the Court of Protection, including whether it is an LPA for property and affairs or personal welfare; in the latter case, whether it includes the power to make end-of-life decisions. This needs to be recorded whether or not the LPA has been put into effect.

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.