v 0.2

OP MH Dementia Dataset OP MH Dementia Data Manual

National Mental Health Dataset Project

OP MH Dementia Data Manual

Based on OP MH Dementia Dataset Draft Version 1.2

Draft Version 0.2March 2005

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Distribution On requestAuthor Jimmy BatesFurther copies from

Penny BrayNHS Information AuthorityKings CourtThe BroadwayWinchester, SO23 9BETel: 0121 333 0333E-mail: [email protected]

Date of issue March 2005


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Table of Contents

A Introduction

B Guide to Data Collection1 Person Demographics2 Dementia Needs Assessment3 Dementia Cognitive Assessment and Clinical Diagnosis4 Referral to Specialist Services5 Dementia - Specialist Treatments6 Diagnosis Related Services7 Dementia - Drug Treatment8 Access to Other Services/Facilities9 Access to Benefits10 Care Package11 Community Related/Epidemiological12 Other

C Appendicesa Key – List of Abbreviationsb Clinical Codesc References

List of Tables

1 Full List of Business Requirements2 Data Items: Person Demographics3 Business Requirements Linked to

Dementia Needs Assessment Data Items4 Data Items: Dementia Needs Assessment5 Business Requirements Linked to

Dementia Cognitive Assessment and Clinical Diagnosis Data Items6 Data Items: Dementia Cognitive Assessment and Clinical Diagnosis7 Business Requirements Linked to Referral to Specialist Services Data Items8 Data Items: Referral to Specialist Services9 Business Requirements Linked to Dementia - Specialist Treatments Data Items10 Data Items: Dementia - Specialist Treatments11 Business Requirements Linked to Diagnosis Related Services Data Items12 Data Items: Diagnosis Related Services13 Business Requirements Linked to Dementia - Drug treatment Data Items14 Data Items: Dementia - Drug treatment15 Business Requirements Linked to Access to Other Services/Facilities Data Items16 Data Items: Access to Other Services/Facilities17 Business Requirements Linked to Access to Benefits Data Items18 Data Items: Access to Benefits19 Business Requirements Linked to Care Package Data Items20 Data Items: Care Package21 Business Requirements Linked to Community Related/Epidemiological Data Items22 Data Items: Community Related/Epidemiological23 Business Items Linked to Other Data Items24 Data Items: Other


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A Introduction

BackgroundThe OP MH Dementia dataset is one of five datasets to support the implementation of the National Service Framework (NSF) for Older People and has been produced by a multi-professional working group (WG) during 2004.

NSF Standard seven: mental health in old people, covers both dementia and depression (the subject of a separate, but related dataset). The aim of this standard is:

“To promote good mental health in older people and to treat and support those older people with dementia and depression”

Standard seven itself states “Older people who have mental health problems have access to integrated mental health services, provided by the NHS and councils to ensure effective diagnosis, treatment and support, for them and their carers.

Mental health problems among older people exact a large social and economic toll on patients, their families and carers, and the statutory agencies. Under-detection of mental illness in older people is widespread, due to the nature of the symptoms and the fact that many older people live alone. Older people from black and minority ethnic communities need accessible and appropriate mental health services, which may not currently be readily accessible or fully appropriate - leading to distrust of agencies tasked with providing this support. Older people with mental health disabilities may also have difficulties obtaining appropriate mental health care.

Although the focus tends to be on dementia and dementia, which are particularly common in older people, illnesses such as schizophrenia also occur. In developing these two datasets (dementia and depression), the working group (WG) recognised that mental health problems can affect people of any age, but that mental health problems tend to increase by age. The WG took the view that much of the data will be collected in a primary care and community setting, with GPs, practice and community nurses being prime examples of professional staff users of these datasets. That being said, it is recognised that many other professional staff will be involved at various stages, including for example: consultants, psychiatrists, pharmacists, therapists, etc.

The data items were generated from a set of related business requirements that were derived mainly from the Older People NSF, the GMS contract and guidelines from the National Institute of Clinical Effectiveness (NICE). This was complemented with NHS performance indicators and specialist advice from members of the Mental Health WG itself. The business requirements were compiled to identify a concise set of particular national and local information imperatives to enable dementia dataset development, so that the monitoring of best practice in dementia care can be monitored.

Purpose of this document

The purpose of this document is to provide additional information in support of the dementia dataset. It functions as a reference guide for any health and care professional who comes into contact with older people.

There are 39 major business requirements that will be met with the completion of the dementia dataset – each one linked back to expert opinion or policy (or similar) guidance. The business requirements are listed in table 1 (page 8) – the origins of each one being outlined more fully in the relevant section. Developing a list of business requirements was a precursor to the development of the dataset: the WG defined what questions need to be answered through the business requirements and subsequently listed data items to meet these requirements.

A summary of good practice for the provision of integrated mental health services can be seen in the National Service Framework for Older People, Chapter 2:

http://www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/OlderPeoplesServices/fs/en


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Key Issues around Using the Dementia Dataset:

Use of the dataset is intended to help improve the prevention, care and treatment of mental health problems in old ages through:

promoting good mental health

early recognition and management of mental health problems

access to specialist care

The dataset is designed as a proactive approach for health and care professionals to begin entering dementia data from the date when a dementia assessment is carried out (as a routine for over 75 year olds), through assessment, diagnosis, referral, treatment, advice and subsequent support, building up a long-term record of individual dementia histories.

The dementia dataset is intended to be used for all patients identified as having a dementia issue.

The dataset covers all stages of the provision of integrated mental health services across the primary, secondary and residential care sectors. Each care provider will be responsible for collecting the required information relating to their contact with the patient, although demographic information will be supplemented by administrative data. The development and implementation of this dataset is a significant undertaking for all those involved in the management and delivery of mental health care.

Finally, it should be noted that the first section of the dataset, Person Demographics, is common to all Older People (and other) Datasets. This section has been designed to be consistent in format with the NHS Data Dictionary, the National Programme for Information Technology (NPfIT), NHS Information Authority standards and the Single Assessment Process (SAP). For those items subject to NHS Data Dictionary format, this is not defined in the dataset itself; rather, reference is made to the data dictionary as the source of information (which is only accessible online, because it is subject to continual update). Access to the NHS Data Dictionary is via:

www.nhsia.nhs.uk/datastandards/pages/ddm/index.asp


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http://www.nhsia.nhs.uk/datastandards/pages/ddm/index.asp


How to use this guide

The data items are grouped into 12 sections:

1. Person Demographics*2. Dementia Needs Assessment3. Dementia Cognitive Assessment and Clinical Diagnosis4. Referral to Specialist Services5. Dementia - Specialist Treatments6. Dementia Related Services7. Dementia - Drug Treatment8. Access to Other Services/Facilities9. Access to Benefits10. Care Package11. Community Related/Epidemiological12. Other

* This section has been designed to be consistent in format with the NHS Data Dictionary, the National Programme for Information Technology (NPfIT), NHS Information Authority standards and the Single Assessment Process (SAP) for older people.

For each of the other main sections there is a brief text introduction, followed by a table listing the relevant business requirements for that particular section, eg:

No. Business Requirement Document of Origin Comment2. Simple mental state tests should be used in

primary care to assess for dementiaClinical guidelines Possible scores are mini-

mental test, AMTS, 6CIT, other

The ‘document of origin’ indicates where the main influence came from for the inclusion of the business requirement. The business requirement may not always be a straight quote and may differ slightly as the working group strove to balance the requirements of a number of documents and make the statements relevant to the dataset development. Where the business requirement was the result of expert opinion from the working group (or external reference group) it is indicated in this column.

The ‘Comment’ column contains additional detail about the data that must be collected for each item.

Each section then follows with a second table that lists the data items (from the dataset itself) for the section, eg:

No. Data Item Description Purpose2.1 Date of last

routine health check

The date of the last routine health check

Patients with dementia should be diagnosed as early as possible in the disease trajectory. Routine health checks for older people should screen for dementia.

Simple mental health test should be used in primary care

The first column is the number of the data item, the second is the title of the data item, the third is a description of the item and the fourth explains the purpose of collecting this data item (the format in which the data should be collected is described in the following sections of this manual).

If the data item is defined to conform to another existing dataset (eg, Single Assessment Summary dataset), this is also indicated in this column.


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The fourth (‘Purpose’) column also includes a reference to the related business requirement that it is designed to meet (in full or part).

A final column contained in the actual dataset itself provides a description of the format the required data is to be collected in. These required formats are individually described in this manual immediately following each table.

The appendices of this manual contain a list of the Read / ICD-10 codes related to relevant data items (a full list of the clinical codes for this dataset is planned to be included in the appendices of the final version of this data manual), plus a listing of the abbreviations and references used in the dementia dataset.


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Table 1 Full List of Mental Health Business RequirementsRef Business Requirement1. Patients with dementia should be diagnosed early in the disease trajectory as possible. For example 75+

health checks routinely offered should screen for dementia2. Simple mental state tests should be used in primary care to assess for dementia. 3. Dementia may present with symptoms other than memory loss. 4. Evidence that a physical exam has been carried out. 5. Evidence that tests are carried out as per local protocol. 6. The clinical Diagnosis of dementia should be based on a standardised system such as ICD-10 / read

codes7. Attempts should be made to specify clinical sub-typing such as Alzheimer's disease, Vascular Dementia,

DLB Frontal Lobe Dementia, Normal Pressure Hydrocephalus etc.8. Easy early and informative referral should be made to a specialist service if dementia is suspected or

confirmed9. First specialist assessment is carried out by a suitably qualified professional with access to

multidisciplinary mental health service (including social services)10. Patients referred to a specialist service should have a comprehensive assessment including medical

assessment, neuropsychology and social, supported by neuro imaging11. specialist treatments offered should be recorded12. There is a record of who has been informed with regard to the diagnosis13. Patients should be advised of their responsibility to inform the DVLA14. Patients should be given information about the options of appointing a Power of Attorney15. Patients should be given the opportunity to discuss advance directives16. Patients should be given the opportunity to discuss appropriate services that are available to them

(including 24 hour crisis support)17. Where clinically appropriate patients should have access to anti dementia drugs

Patient's full range of medication reviewed at home visit and medication support needs assessed18. Cholinesterase inhibitors should be prescribed by a specialist in elderly care / old age psychiatry /

neurology for mild and moderate AD where the mini mental state examination is above 12 points, following full assessment in a specialist clinic

19. Patients prescribed cholinesterase inhibitors should be reviewed 2 to 4 months after the initiation of treatment

20. Patients who continue on cholinesterase inhibitors should be reviewed by MMSE score and global and functional and behavioural assessment every 6 months

21. Cholinesterase inhibitors should be discontinued as per national guidance22. All patients on 4 or more antipsychotics or benzodiazepinesdrugs should be reviewed every 6 months.23. There should be access to inpatient and day treatment facilities if required24. There should be access both planned and emergency respite facilities if required25. Intermediate care (emergency and planned), and 24 hour access to crisis support services should be

available to patients and carers26. There should be access to benefits advice and benefits as required27. An individual care package is developed that reflects both health and social care needs of the patient

according to the Single assessment process28. Carers of patients with dementia should undergo individual carers assessment29. An individual care package is developed that reflects both health and social care needs of the carers

according to the Single assessment process30. Numbers of older people with dementia in the locality living alone and with family carers31. Numbers of older people from minority ethnic communities with dementia in the locality living alone

and with family carers32. Proportion of GPs with copies of care plans for all their patients who should have one33. Proportion of CPA care plans for people with severe mental illness signed by user34. Proportion of carers on enhanced CPA that have had their own written care plan35. Proportion of carers of people on enhanced CPA having had a needs assessment36. Best practice is followed in the last days and hours of life 37. Patients with Young Onset Dementia


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B Guide to Data Collection

1 Person Demographics

This section is common to all datasets and contains data items which provide information about the person. These data items are listed here together for reference, but it is not intended that they should necessarily all be collected at the same point in the pathway. Rather, some should be collected once, on initial contact with the person; others should be collected at each point in the during the course of treatment.

Where this information is exchanged, the appropriate data item name should be used to identify the particular instance of the data.

Some data items for a person will never change; others can and will change over time.

As noted in the ‘How to Use this Guide’ section above, those data items already published in the NHS Dictionary contain only an associated reference to the data dictionary in the ‘Description’ column (rather than an actual description of the item, because it is which subject to continuous update). Likewise, this same reference is all that is contained in the ‘Codes and Classifications’ column for these same data items (rather than a definition of the format in which the data for these items is to be collected) for the same reason. Access to the NHS Data Dictionary can only be made online (rather than being able to obtain a paper or electronic disk-based copy), to ensure that professional users of the dataset are always provided with the latest up-to-date version.

Table 2 Data Items: Person Demographics

Ref.

No.

Data Item Description Purpose

1.1 NHS NUMBER See NHS Data Dictionary Used to uniquely identify the patient who is the subject of the dataset.

1.2 LOCAL PATIENT IDENTIFIER

See NHS Data Dictionary Used to uniquely identify the patient within a health care provider

1.2a ORGANISATION CODE (LOCAL PATIENT IDENTIFIER)

See NHS Data Dictionary

1.3 CASE NUMBER The unique number assigned to a person when they are formally recognised as a social service user and have a case opened for them.

Used to uniquely identify the patient who is the subject of the Dataset within a local authority care provider

1.3a LOCAL AUTHORITY CODE

The identifier of a local authority within the UK

1.4 PERSON FAMILY NAME

See NHS Data Dictionary Identifies that part of a person's name which is used to describe family, clan, tribal group, or marital association.

1.5 PERSON GIVEN NAME

See NHS Data Dictionary Identifies the forename or given name of a person.

1.6 PATIENT USUAL ADDRESS

See NHS Data Dictionary Identifies the address details for the person at their usual address

1.7 POSTCODE OF USUAL ADDRESS

See NHS Data Dictionary.

1.8 PRESENT ADDRESS

This is the ADDRESS nominated by the PATIENT, with ADDRESS ASSOCIATION TYPE of Present address’

Identifies the address details for the person at their present address where this is different from their usual address

1.9 POSTCODE OF PRESENT ADDRESS

The POSTCODE of the ADDRESS nominated by the PATIENT with ADDRESS ASSOCIATION TYPE 'Present Address’.


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1.10 PERSON BIRTH DATE

See NHS Data Dictionary Additional identifier for the person who is the subject of the dataset. Also required for the calculation of age. To enable the provision of case mix indicators.

1.11 PERSON GENDER CURRENT

See NHS Data Dictionary Identifies the phenotypical gender classification that currently applies to the person.

1.12 ETHNIC CATEGORY

See NHS Data Dictionary. Records the ethnicity of a person, as specified by the person.

1.13 GP NAME (NAME OF REGISTERED OR REFERRING GMP)

See NHS Data DictionaryIdentifies the name of the person’s general medical practitioner

1.14 GMP (CODE OF REGISTERED OR REFERRING GMP)

See NHS Data Dictionary. Identifies the unique code for the person’s general medical practitioner

1.14a ORGANISATION NAME (GP PRACTICE)

The name of the GP practice for the GMP who has either registered or referred the PATIENT

Identifies the name for the person’s general medical practitioner

1.15 CODE OF GP PRACTICE (REGISTERED GMP)

See NHS Data Dictionary Identifies the unique practise code for the person’s general medical practitioner

1.16 ORGANISATION CODE (PCT OF GP PRACTICE)

See NHS Data Dictionary Identifies the unique code of the Primary Care Trust responsible for the GP practise at which the person is registered.

1.17 ORGANISATION CODE (CODE OF PROVIDER)

See NHS Data Dictionary Identifies the unique code of the ORGANISATION providing the care to the patient.

1.18 ORGANISATION CODE (CODE OF COMMISSIONER)

See NHS Data Dictionary Identifies the unique code of the ORGANISATION commissioning the care for the patient.

1.1 NHS Number

Record the person’s unique NHS Number. It is mandatory to record the new NHS number for each person. If the NHS number is not available for a person it can be accessed via the NHS Tracing Service. Access to the NSTS is via the secure website at http://nww.nhsia.nhs.uk/nsts

This can take some time but need only be done once for each person and then the information shared as this is a permanent lifetime number that will not change. Format is as defined in the NHS Data Dictionary

1.2 Local Patient Identifier

Record the code used specifically within the organisation to uniquely identify the patient. This may be hospital site specific, that is, there may be different hospital numbers collected for the person at different points in the pathway – hence the data item should be a repeating item. Format is as defined in the NHS Data Dictionary


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http://nww.nhsia.nhs.uk/nsts


1.2a Organisation Code (Local Patient Identifier) Record the code used specifically to identify the organisation responsible for the care or treatment of the patient. The patient may be treated at more than one organisation hence this will need to be a repeating data item. Format is 5 alphanumeric characters

1.3 Case Number

Social services case number to allow identification of person records held by social services. NHS number should be the primary identifier for all persons. Up to 10 alphanumeric characters are allowed.

1.3a Local Authority Code This data item is used in conjunction with the previous one (Case Number) to provide a unique reference for the person. This pair of data items may occur any number of times.

The organisation identifier of the local authority providing social care to the person. Format is an4, comprising 2 numeric characters followed by 2 alphabetical characters

1.4 Person Family Name

Identifies that part of a person’s name which is used to describe the family, clan, tribal group or marital association who is the subject of the Dementia Dataset. If the person’s family name (surname) changes during care, it is essential that the latest name is recorded. Format is as defined in the NHS Data Dictionary

1.5 Person Given Name

Identifies the forename or given name of the person who is the subject of the Dementia Dataset. If the person’s forename(s) or personal name(s) changes during care, it is essential that the latest names are recorded Format is as defined in the NHS Data Dictionary

1.6 Patient Usual Address

Identifies the address details for the person at their usual address. Format is as defined in the NHS Data Dictionary

1.7 Postcode Of Usual Address

Identifies the address details for the person at their usual address. Format is as defined in the NHS Data Dictionary

1.8 Present Address

Identifies the address details for the person at their present address where this is different from their usual address. Format is the same as defined in the NHS Data Dictionary for PATIENT USUAL ADDRESS

1.9 Postcode of Present Address

Identifies the address details for the person at their present address where this is different from their usual address. Format is the same as defined in the NHS Data Dictionary for PATIENT USUAL ADDRESS

1.10 Person Birth Date

This is an additional identified for the person who is subject to the dataset. It is also required to calculate the person’s age, and to enable the provision of case mix indicators. Format is as defined in the NHS Data Dictionary


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1.11 Person Gender Current

Identifies the phenotypical gender classification that currently applies to the person Format is as defined in the NHS Data Dictionary

1.12 Ethnic Category

Records the ethnicity of a person, as specified by the person. Format is as defined in the NHS Data Dictionary

1.13 GP Name (Name of Registered or Referring GMP)

Identifies the name of the person’s general medical practitioner. Format is as defined in the NHS Data Dictionary

1.14 GMP (Code Of Registered Or Referring GMP)

Identifies the unique code for the person’s general medical practitioner Format is as defined in the NHS Data Dictionary

1.14a Organisation Name (GP Practice)

Identifies the name for the person’s general medical practitioner. Format is a maximum of 255 alphanumeric characters

1.15 Code of GP Practice (Registered GMP)

Identifies the unique practice code for the person’s general medical practitioner. Format is as defined in the NHS Data Dictionary

1.16 Organisation Code (PCT of GP Practice)

Identifies the unique code of the Primary Care Trust responsible for the GP practice at which the person is registered Format is as defined in the NHS Data Dictionary

1.17 Organisation Code (Code of Provider)

Identifies the unique code of the ORGANISATION providing care to the patient. Format is as defined in the NHS Data Dictionary

1.18 Organisation Code (Code of Commissioner)

Identifies the unique code of the ORGANISATION commissioning the care for the patient. Format is as defined in the NHS Data Dictionary


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2 Dementia Needs Assessment

Data items 2.1 to 2.4 relate to information about the initial assessment of dementia, the role of the healthcare individual who collected the information, and related dates. They originate from a number of business requirements (see below) and can be referenced back primarily to the NICE clinical guidelines and expert opinion from the mental health dataset WG.

Table 3 Business Requirements Linked to Dementia Needs Assessment Data Items

Ref Business Requirement Document of Origin

Comment

1. Patients with dementia should be diagnosed early in the disease trajectory as possible. For example 75+ health checks routinely offered should screen for dementia

NICE guidelines

Table 4 Data Items: Dementia Needs Assessment


2.1 DATE OF LAST ROUTINE HEALTH CHECK

The date of the last routine health check

Patients with dementia should be diagnosed as early as possible in the disease trajectory. Routine health checks for older people should screen for dementia.

Simple mental health test should be used in primary care.

Business Requirements Draft 0.8a Requirement 1

2.2 DATE OF NEEDS ASSESSMENT (MEMORY LOSS)

The date the memory assessment was conducted

2.3 ASSESSMENT (MEMORY LOSS)

A summary of the person’s memory needs and circumstances captured within a Single Assessment Process

2.4 NEEDS ASSESSOR (MEMORY LOSS)

The person responsible for the memory loss needs and circumstances assessment

2.1 Date of Last Routine Health Check

The date of the last routine health check. Format is 8 numeric characters (with 2 spaces) indicating the year-month-day (4-2-2)

2.2 Date of Needs Assessment (Memory Loss)

The date the memory assessment was conducted Format is 8 numeric characters (with 2 spaces) indicating the year-month-day (4-2-2)

2.3 Assessment (Memory Loss)

A summary of the person’s memory loss needs and circumstances captured within a Single Assessment Process. Format is 2 numeric characters (to indicate Need being addressed, Not being addressed, No current need or

Unknown)

2.4 Needs Assessor (Memory Loss)

The person responsible for the memory loss needs and circumstances assessment. Format is text


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3 Dementia Cognitive Assessment and Clinical Diagnosis

Data items 3.1 to 3.10 relate to detailed assessment of cognitive functions and memory loss, diagnosis and related dates. They originate from a number of business requirements (see below) and can be referenced back to the National Service Framework for Older People, ERG, NICE clinical guidelines, RCP consensus document and expert opinion from the dementia dataset WG.

Table 5 Business Requirements Linked To Dementia & Morale Assessment and Clinical Diagnosis


Comment

2 Simple mental state tests should be used in primary care to assess for dementia

NICE guidelines Possible scores are mini-mental test, AMTS, 6CIT, other

3 Dementia may present with symptoms other than memory loss

ERG

4 Evidence that a physical examination has been carried out

NICE guidelines /RCP consensus document

Links to primary care - tests are commenced here

5 Evidence that tests are carried out as per local protocol

6 The clinical diagnosis of dementia should be based on standardised system such as ICD-10 / Read codes

7 Attempts should be made to specify clinical sub-typing such as Alzheimer’s disease, vascular dementia, DLB frontal lobe dementia, normal pressure, hydrocephalus, etc.

Table 6 Data Items: Dementia Cognitive Assessment and Clinical Diagnosis


3.1 ASSESSMENT DATE (COGNITIVE FUNCTIONS AND MEMORY)

The date on which the cognitive functions and memory of the person were assessed using the identified assessment scale

3.2 ASSESSMENT SCALE USED (COGNITIVE FUNCTIONS AND MEMORY)

The assessment scale used to determine the person’s cognitive functions and memory

link to primary care – tests are commenced here

3.3 ASSESSMENT SCORE (COGNITIVE FUNCTIONS AND MEMORY)

The assessment score achieved by the person in relation to their cognitive functions and memory

3.4 DATE (PHYSICAL EXAMINATION)

Date of examination, to provide evidence that a physical examination of the person was carried out

3.5 PRESENTING SYMPTOM (S)

Symptoms recorded at diagnosis of dementia

To capture other symptoms that may present in addition to memory loss

3.6 DATE (Symptom first recorded)

First date that each symptom was recorded


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The clinical diagnosis of dementia and types of dementia should be based upon a standardised system such as ICD-10, Read codes or Snomed

Attempts should be made to specify clinical sub-typing such as; Alzheimer’s disease, Vascular Dementia, DLB Frontal lobe Dementia, Normal Pressure Hydrocephalus etc.

3.7 DIAGNOSIS (ENDURING IMPACT ON NEEDS ICD)

A medical diagnosis that potentially has an enduring impact on the health and social care needs of the person

3.8 DIAGNOSIS (ENDURING IMPACT ON NEEDS Read)


3.9 DIAGNOSIS (ENDURING IMPACT ON NEEDS Snomed)


3.10 DIAGNOSIS DATE(DIAGNOSIS)

The date on which the diagnosis was made

3.1 Assessment Date (Cognitive Functions and Memory)

The date on which the cognitive function and memory of the person were assessed using the identified assessment scale Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-2)

3.2 Assessment Scale Used (Cognitive Functions and Memory)

The assessment scale used to determine the person’s cognitive function and memory. Format is 2 alphanumeric characters to indicate assessment scale used

3.3 Assessment Score (Cognitive Functions and Memory)

The assessment score achieved by the person in relation to their cognitive functions and memory. Format is alphanumeric

3.4 Date (Physical Examination)

Date of examination, to provide evidence that a physical examination of the person was carried out. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

3.5 Presenting Symptom(s)

Symptoms recorded at diagnosis of dementia. Format to be defined

3.6 Date (Symptom First Recorded)

First date on that each symptom was recorded. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

3.7-9 Diagnosis (Enduring Impact on Needs)

A medical diagnosis that potentially has an enduring impact on the health and social care needs of the person Format is relevant ICD, Read, Snomed code

3.10 Diagnosis Date (Diagnosis)

The date on which the diagnosis was made. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


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4 Referral to Specialist Services

Data items 4.1 to 4.19 relate to referral to specialist services, assessment, services and related dates. They originate from a number of business requirements (see below) and can be referenced back to the National Service Framework for Older People, RCP consensus document and expert opinion from the mental health WG.

Table 7 Business Requirements Linked To Referral to Specialist Services


Comment

8 Easy, early and informative referral should be made to a specialist service if dementia is suspected or confirmed

RCP consensus document

9 First specialist assessment is carried out by a suitably qualified professional with access to multi-disciplinary mental health service (including social services)

10 Patients referred to a specialist service should have a comprehensive assessment including medical assessment, neuropsychology and social, supported by neuro-imaging

Organisation rather than patient-related data

Table 8 Data Items: Referral to Specialist Services


4.1 DATE (PRESENTING SYMPTOMS)

The date the presenting symptoms were first recorded

same as field recorded under diagnosis see 2.5

4.2 REFERRED ON? (TO SPECIALIST SERVICE)

To capture whether the person was referred onto a specialist

To capture those cases who are or who are not referred on for specialist services

4.3 DATE (REFERRAL TO SPECIALIST SERVICE)

The data a referral was made to a specialist service

Easy, early and informative referral should be made to a specialist service if dementia suspected or confirmed. Also provides data on the time between referral and first appointment

4.4 DATE (SEEN BY SPECIALIST SERVICE)

The date the person was seen be a specialist service

4.5 REFERRAL SOURCE

Source of referral to specialist service

To provide information on sources of referral to specialist services

4.6 REASON (FOR REFERRAL)

The reason the person was referred to the specialist service

4.7 SERVICE TYPE The type of service the person was referred to the specialist service for

4.8 PERSON ROLE IN ORGANISATION(FIRST SPECIALIST)

The professional role of the person making the first specialist assessment


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4.9 REFERRAL TYPE Referral type required (other relevant professional)

n2 (suggested professional roles):01= Psychiatrist02= Mental health nurse03= Social worker04= Psychologist05= Occupational therapist06= Other allied health professional07= Other

4.10 REFERRAL DATE Date referred to other health care professional

4.11 ASSESSMENT DATE

Date assessed by other relevant professional

4.12 ASSESSMENT LOCATION

Location where the other health professional conducted assessment

To monitor where assessments are undertaken

4.13 DATE DISCUSSED Date on which the case is discussed at the MDT (Multi Disciplinary Team)

4.14 DATE SEEN (SPECIALIST SERVICE)

The date the person is seen by the specialist service

Patients referred to a specialist service should have a comprehensive assessment including medical assessment, neuro psychology and social, supported by neuro imaging

4.15 DATE (OF SPECIALIST EXAMINATION)

The date the specialist examination is conducted

4.16 DATE (NEURO PSYCHOLOGICAL ASSESSMENT)

The date a Neuro Psychological assessment is conducted

4.17 DATE (SOCIAL ASSESSMENT)

The date a social assessment is conducted

4.18 DATE (BRAIN SCAN)

The date a brain scan is conducted

4.19 SERVICE TYPE (REFERRED TO)

Specialist service the person is referred to

4.1 Date (Presenting Symptoms)

The date the presenting symptoms were first recorded. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

4.2 Referred On? (to a Specialist Service)

To capture whether the person was referred onto a specialist. Format is 2 numeric characters (to indicate Yes, No, Unknown)

4.3 Date (Referral to Specialist Service)

The date a referral was made to a specialist service. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

4.4 Date (Seen by to Specialist Service)

The date the person was seen by a specialist service. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


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4.5 Referral Source

Source of referral to specialist service. Format to be confirmed (suggested 2 numeric characters to indicate source type)

4.6 Reason (For Referral)

The reason the person was referred to the specialist service. Format is 2 numeric characters (to indicate reason for referral)

4.7 Service Type

The type of service the person was referred to the specialist service for. Format is 2 numeric characters (to indicate professional role of service provider)

4.8 Person Role in Organisation (First Specialist)

The professional role of the person making the first specialist assessment. Format is 2 numeric characters (to indicate professional role of assessor)

4.9 Referral Type

Referral type of required (other relevant professional). Format is 2 numeric characters (to indicate professional role)

4.10 Referral Date

Date referred to other health care professional. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

4.11 Assessment Date

Date assessed by other relevant professional. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

4.12 Assessment Location

Location where the other health professional conducted the assessment. Format is free text or 2 numeric characters (to indicate location type)

4.13 Date Discussed

Date on which the case was discussed at the multi-disciplinary teams. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

4.14 Date Seen (Specialist Service)

The date the person was seen by the specialist service. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

4.15 Date (of Specialist Examination)

The date the specialist examination was conducted. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

4.16 Date (Neuro Psychological Assessment)

The date a neuro psychological assessment was conducted. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


18


4.17 Date (Social Assessment)

The date a social assessment was conducted. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

4.18 Date (Brain Scan)

The date a brain scan was conducted. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

4.19 Service Type (Referred to))

Specialist service the person was referred to. Format to be confirmed


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5 Dementia - Specialist Treatments

Data items 5.1 to 5.4 relate to drugs, behaviour management and counselling dates. They originate from a number of business requirements (see below) and can be referenced back to the National Service Framework for Older People and expert opinion from the mental health WG.

Table 9 Business Requirements Linked To Dementia - Specialist Treatments


Comment

11 Specialist treatments offered should be recorded

WG

Table 12 Data Items: Referral to Specialist & Referral to Specialist Treatment and Therapies


5.1 START DATE (ANTIDEMENTIA DRUGS)

The date that antidementia drug(s) were prescribed

Specialist treatments that are offered should be recorded

5.2 START DATE (OTHER DRUGS)

This needs further discussion - which other drugs are to be recorded and if so are they to be coded by type (eg, antipsychotic or actual name?)

5.3 START DATE (BEHAVIOUR MANAGEMENT)

The start date that the non-professional carers received behaviour management support and advice

5.4 START DATE (INDIVIDUAL COUNSELLING)

The start date that the patient received individual counselling

5.1 Start Date (Antidementia Drugs)

The date that antidementia drugs were prescribed. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

5.2 Start Date (Other Drugs)

The date that other drugs were prescribed. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

5.3 Start Date (Behaviour Management)

The start date that the non-professional carers received behaviour management support and advice. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

5.4 Start Date (Individual Counselling)

The start date that the patient received individual counselling. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


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6 Diagnosis Related Services

Data items 6.1 to 6.6 relate to related diagnosis and advice services and related dates. They originate from a number of business requirements (see below) and can be referenced back to the National Service Framework for Older People, NICE clinical guidelines, ERG and expert opinion from the mental health WG.

Table 11 Business Requirements Linked To Diagnosis Related Services


Comment

12 There is a record of who has been informed with regard to the diagnosis

Look at cancer items

13 Patients should be advised of their responsibility to inform the DVLA

NICE clinical guidelines

DVLA14 Patients should be given information

about the options of appointing a Power of Attorney

ERG

15 Patients should be given the opportunity to discuss advance directives

ERG Generic issue for OP datasets

16 Patients should be given the opportunity to discuss appropriate services that are available to them (including 24 hour crisis support)

Table 12 Data Items: Diagnosis Related Services


6.1 DATE (DEMENTIA DIAGNOSIS DISCUSSED WITH PATIENT)

The date the person was informed of the diagnosis To monitor there is a record of who has

been informed of the diagnosis.

6.2 DATE (DEMENTIA DIAGNOSIS DISCUSSED WITH SIGNIFICANT OTHER)

The date that the dementia was discussed with another person who has a significant relationship with the patient

6.3 DATE (re: DVLA ADVICE)

The date the person was advised of their responsibility to the DVLA

To monitor that patients are advised re: the impact of their condition with regard to driving

6.4 DATE (re: POWER OF ATTORNEY)

The date the person was given information about the options of appointing a Power of Attorney

To monitor that patients are informed re: the options regarding the appointment of powers of attorney

6.5 DATE (re: ADVANCED DIRECTIVES)

The date the person receives a consultation including advice regarding the appropriate services that are available to them including 24hr crisis support

General issue re; older people dataset


21


6.6 DATE (re: SERVICES) This is role in the organisation performed by the care professional who undertook the home visit

General issue re; older people dataset

6.1 Date (Dementia Diagnosis Discussed with Patient)

The date that the person was informed of the diagnosis. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

6.2 Date (Dementia Diagnosis Discussed with Significant Other)

The date that the dementia diagnosis was discussed with another person who has a significant relationship with the patient. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

6.3 Date (DVLA Advice)

The date the person was advised about their responsibility to the DVLA. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

6.4 Date (Power of Attorney Advice)

The date that the person was given information about the options of appointing a power of attorney. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

6.5 Date (Advanced Directives)

The date the person received a consultation wherein they are given the opportunity to discuss advanced directives. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

6.6 Date (Services)

The date the person received a consultation including advice regarding the appropriate services that are available to them including 24hr crisis support. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


22


7 Dementia - Drug Treatment

Data items 7.1 to 7.26 relate to prescribing drugs, assessment, review and related dates. They originate from a number of business requirements (see below) and can be referenced back to the National Service Framework for Older People, NSF/Medicines, NICE clinical guidelines and expert opinion from the mental health WG.

Table 13 Business Requirements Linked To Dementia - Drug Treatment


Comment

17 Where clinically appropriate patients should have access to antidepressant drugs


18 Cholinesterase inhibitors should be prescribed by a specialist in elderly care/old age psychiatry/neurology for mild and moderate AD where the mini-mental state examination is above 12 points, following full assessment in a specialist clinic.


19 Patients prescribed cholinesterase inhibitors should be reviewed 2 to 4 months after the initiation of treatment


20 Patients who continue on cholinesterase inhibitors should be reviewed by MMSE score and global and function and behavioural assessment every 6 months


21 Cholinesterase inhibitors should be discontinued as per national guidance


The threshold for discontinuing is currently a mini-mental score of 12 but may change

22 All patients on 4 or more antipsychotics or benzodiazepines drugs should be reviewed every 6 months

NSF

Table 12 Data Items: Referral to Specialist & Referral to Specialist Treatment and Therapies


7.1 ANTI DEMENTIA DRUG PRESCRIBED?

Has the person been prescribed an anti dementia drug?

To monitor use of anti dementia drugs

7.2 PRESCRIBING SOURCE (ANTIDEMENTIA DRUG)

The originating source of the prescriber of the anti dementia drug

To monitor the prescribing source patterns for anti dementia drugs

Cholinesterase inhibitors should be prescribed by a specialist in elderly care/old age psychiatry/neurology for mild and moderate AD where the mini mental state examination is above 12 points, following full assessment in a specialist clinic


23


7.3 PROFESSIONAL ROLE IN ORGANISATION (PRESCRIBING SOURCE)

This is the role in the organisation of the prescribing source.

Identifies contact details for the prescribing source

7.4 START DATE (ANTI DEMENTIA DRUGS)

The date the person was prescribed anti dementia drugs

To monitor prescribing of anti dementia drug therapiesnote Are these to be tracked separately from cholinesterase inhibitors?

7.5 DEMENTIA DRUG PRECRIBED

The actual anti dementia drug prescribed for the person

To monitor the prescribing patterns of anti dementia drug therapies

7.6 ASSESSMENT DATE (COGNITIVE FUNCTION AND MEMORY)

The date on which the cognitive functions and memory of the person were assessed using the identified assessment scale.

To monitor time period between cognitive function and prescription of anti dementia drug therapy



To monitor use of specific assessment scales in respect of memory and cognitive function



To monitor the person’s cognitive impairment relative to therapies used

7.9 DATE (ASSESSED IN A SPECIALIST CLINIC)

Cholinesterase inhibitors should be prescribed by a specialist in elderly care/old age psychiatry/neurology for mild and moderate AD where the mini mental state examination is above 12 points, following full assessment in a specialist clinic

7.10 DATE (START DATE CHOLINESTERASE INHIBITORS)

The start date that the cholinesterase inhibitors treatment began

Patients prescribed cholinesterase inhibitors should be reviewed 2 to 4 months after the initiation of treatment

7.11 REVIEW DATE (CHOLINESTERASE INHIBITORS)

The date the patient prescribed cholinesterase inhibitors was reviewed

7.12 REVIEW ASSESSMENT SCALE USED (COGNITIVE FUNCTIONS AND MEMORY)



7.13 REVIEW ASSESSMENT SCORE (COGNITIVE FUNCTIONS AND MEMORY)



7.14 SIX MONTH REVIEW DATE (CHOLINESTERASE INHIBITORS)

The date the patient prescribed cholinesterase inhibitors was reviewed

Patients who continue on cholinesterase inhibitors should be reviewed by MMSE score, global, functional and behavioural assessments every six months.

7.15 DATE (START DATE CHOLINESTERASE INHIBITORS)

The start date that the cholinesterase inhibitors treatment began





24





7.18 DATE (END DATE CHOLINESTERASE INHIBITORS)

The date that the cholinesterase inhibitors treatment ended.

Cholinesterase inhibitors should be discontinued as per national guidance. The threshold for discontinuing is currently a mini mental score of 12, but this may change.

7.19 REASON (CHOLINESTERASE INHIBITORS STOPPED)

The reason why the cholinesterase inhibitors treatment was ended.

To monitor prescribing patterns for cholinesterase inhibitors relevant to cognitive function assessments


The assessment score achieved by the person in relation to their cognitive functions and memory at the end of the cholinesterase Inhibitors treatment


7.21 ASSESSMENT DATE (COGNITIVE FUNCTION AND MEMORY)

The date on which the cognitive functions and memory of the person were assessed using the identified assessment scale.

To monitor time period between cognitive function and prescription of anti dementia drug therapy and the cessation of the drug treatment

7.22 NEEDS ASSESOR (MEMORY LOSS)

This is person undertaking the memory/cognitive function test.

Identifies contact details for the memory/cognitive function assessment

7.23 DATE (RE START DATE CHOLINESTERASE INHIBITORS)

The date that the cholinesterase Inhibitors treatment was re started.

To monitor instances of CI treatment being restarted

7.24 REVIEW DATE (GENERAL DRUG REVIEW)

The date the person’s general drugs were reviewed

All patients on antipsychotics or benzodiazepines +/- 4 or more drugs should be reviewed every 6 months

7.25 DATE OF RE-ASSESSMENT OF NEEDS

The date the needs of the person was assessed once the drugs were stopped

7.26 PROFESSIONAL ROLE (PERSON REVIEWING GENERAL DRUGS)

This is the role of the person conducting the review of the patient’s general drugs.

Identifies the role & contact details for the reviewing person

7.27 DATE IF 75+ ANNUAL ASSESSMENT

The date that an annual review was made of a person who is 75+ years old

7.28 NUEROLEPTIC USE Type of neuroleptic medicine prescribed

7.1 Antidementia Drug Prescribed?

Has the person been prescribed an antidementia drug? Format is 2 numeric characters (to indicate Yes, No, Not known)

7.2 Prescribing Source (Antidementia Drug)

The originating source of the prescriber of the antidementia drug. Suggested format is 1 alphabetic character to indicate type of organisation

7.3 Professional Role in Organisation (Prescribing Source)

This is the role in the organisation of the prescribing source. Format is a maximum of 255 alphanumeric characters


25


7.4 Start Date (Antidementia Drug)

The date the person was prescribed antidementia drugs. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

7.5 Dementia Drug Prescribed

The actual antidementia drug prescribed for the person. Format is free text with a maximum of 255 alphanumeric characters

7.6 Assessment Date (Cognitive Function and Memory)

The date on which the cognitive functions and memory of the person were assessed using the identified assessment scale. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

7.7 Assessment Scale (Cognitive Function and Memory)

The assessment scale used to determine the person’s cognitive functions and memory. Format is 2 alphanumeric characters to indicate scale used

7.8 Assessment Score (Cognitive Function and Memory)

The assessment score achieved by the person’s in relation to their cognitive functions and memory. Format is alphanumeric

7.9 Date (Assessed in a Specialist Clinic)

The date the person was assessed in a specialist clinic. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

7.10 Date (Start Date Cholinesterase Inhibitors)

The start date that the cholinesterase inhibitors treatment began. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

7.11 Review Date (Cholinesterase Inhibitors)

The date the patient prescribed cholinesterase inhibitors was reviewed. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

7.12 Review Assessment Scale Used (Cognitive Functions and Memory)

The assessment scale used to determine the person’s cognitive functions and memory. Format is 2 alphanumeric characters (to indicate scale used)

7.13 Review Assessment Score (Cognitive Functions and Memory)

The assessment score achieved by the person in relation to their cognitive functions and memory. Format is alphanumeric?

7.14 Six Month Review Date (Cholinesterase Inhibitors)

The date the patient prescribed cholinesterase inhibitors was reviewed. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


26


7.15 Date (Re-Start Date Cholinesterase Inhibitors)

The date that cholinesterase inhibitors treatment was restarted. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

7.16 Assessment Scale Used (Cognitive Functions and Memory)

The assessment scale used to determine the person’s cognitive functions and memory. Format is 2 alphanumeric characters (to indicate scale sued)


The assessment score achieved by the person in relation to their cognitive functions and memory. Format is alphanumeric?

7.18 Date (End Date Cholinesterase Inhibitors)

The date the cholinesterase inhibitors treatment ended. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

7.19 Reason (Cholinesterase Inhibitors Stopped)

The reason why the cholinesterase inhibitors treatment was ended. Format is 2 numeric characters (to indicate reason


The assessment score achieved by the person in relation to their cognitive functions and memory at the end of the cholinesterase inhibitors treatment. Format is alphanumeric?

7.21 Assessment Date (Cognitive Function and Memory)

The date on which the cognitive functions and memory of the person were assessed using the identified assessment scale. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

7.22 Needs Assessor (Memory Loss)

The person undertaking the memory/cognitive test. Format is a maximum of 255 alphanumeric characters

7.23 Date (Re-Start Date Cholinesterase Inhibitors)

The date that the cholinesterase inhibitors treatment was restarted. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

7.24 Review Date (General Drug Review)

The date the person’s general drugs were reviewed. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

7.25 Date of Re-assessment of Needs

The date the needs of the person was assessed once the drugs were stopped. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


27


7.26 Professional Role (Person Reviewing General Drugs)

This is the role of the person conducting the review of patient’s general drugs. Format is a maximum of 255 alphanumeric characters

7.27 Date of 75+ Annual Assessment

The date that an annual review was made of a person who is 75+ years old. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

7.28 Neuroleptic Use

Type of neuroleptic medicine prescribed. Format is a text (or 2 numeric characters) to indicate type.


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8 Access to Other Services/Facilities

Data items 8.1 to 8.31 relate to other referrals and treatments, including hospital-based, emergency, 24 hour crisis support, and related dates. They originate from a number of business requirements (see below) and can be referenced back to the National Service Framework for Older People, NICE clinical guidelines and expert opinion from the mental health WG.

Table 15 Business Requirements Linked To Other Service/Facilities


Comment

23 There should be access to inpatient and day treatment facilities if required

WG

24 There should be access both planned and emergency respite facilities if required

25 Intermediate care (emergency and planned) and 24 hour access to crisis support services should be available to patients and carers

This business requirement also needs to be monitored via organisational audit

Table 16 Data Items: Access to Other Services/Facilities


8.1 DATE (CONSULTATION RE AVAILABLE SERVICES)

The date the person received a consultation explaining the various services available to patients and carers including 24 hour support

To monitor good practice in advising patients and carers of available services. This requirement should also be monitored via the organisational audits

8.2 REFERRAL DATE (HOSPITAL PROVIDER SPELL)

The date the person was referred for a Hospital based provider spell

There should be access to Inpatient facilities if required

8.3 PROFESSIONAL ROLE IN ORGANISATION (REFERRING SOURCE)

This is the role in the organisation of the referring source for the hospital facilities.

Identifies role and contact details for the referring source

8.4 START DATE The start date that the person attended a hospital based spell

Monitor time between referral and admission for hospital based facilities/treatment

8.5 END DATE The end date that the person completed a hospital based spell

Monitor the period of time that the patient utilised hospital based facilities/treatment

8.6 REFERRAL DATE (DAY TREATMENT)

The date the person was referred for a day treatment provider spell

There should be access to day treatment facilities if required


This is the role in the organisation of the referring source for the day treatment.


8.8 START DATE(DAY TREATMENT)

The start date that the person attended a day treatment based spell

Monitor time between referral and admission for Day Treatment based facilities/treatment

8.9 END DATE (DAY TREATMENT)

The end date that the person completed a day treatment based spell

Monitor the period of time that the patient utilised day treatment based facilities


29


8.10 REFERRAL DATE (PLANNED RESPITE FACILITIES)

The date the person was referred for planned respite facilities

Monitor the uptake of respite facilities which should be available if required for persons with dementia


This is the role in the organisation of the referring source for the planned respite facilities.


8.12 START DATE (PLANNED RESPITE)

The start date that the person was admitted for respite care

Monitor time between referral and admission for planned respite care

8.13 END DATE (PLANNED RESPITE)

The end date that the person completed a planned respite care stay

Monitor the period of time that the patient utilised planned respite care facilities

8.14 REFERRAL DATE (EMERGENCY RESPITE FACILITIES)

The date the person was referred for emergency respite facilities

Monitor the uptake of emergency respite facilities which should be available if required for persons with dementia


This is the role in the organisation of the referring source for the emergency respite facilities.


8.16 START DATE (EMERGENCY RESPITE STAY)

The start date that the person was admitted for emergency respite care


8.17 END DATE (EMERGENCY RESPITE)

The end date that the person completed a planned respite care stay

Monitor the period of time that the patient utilised planned respite care facilities

8.18 REFERRAL DATE (PLANNED INTERMEDIATE CARE FACILITIES)

The date the person was referred for planned intermediate care facilities

Monitor the uptake of planned intermediate care facilities which should be available if required for persons with dementia


This is the role in the organisation of the referring source for the planned intermediate care facilities.


8.20 START DATE (PLANNED INTERMEDIATE CARE STAY)

The start date that the person was admitted for planned intermediate care

Monitor time between referral and admission for planned intermediate care spells

8.21 END DATE (PLANNED INTERMEDIATE CARE STAY)

The end date that the person completed a planned intermediate care stay

Monitor the period of time that the patient utilised planned intermediate care facilities

8.22 REFERRAL DATE (EMERGENCY INTERMEDIATE FACILITIES)

The date the person was referred for emergency intermediate care facilities

Monitor the uptake of emergency intermediate facilities which should be available if required for persons with dementia


This is the role in the organisation of the referring source for the emergency intermediate care facilities.


8.24 START DATE (EMERGENCY INTERMEDIATE CARE STAY)

The start date that the person was admitted for emergency Intermediate care

Monitor time between referral and admission for planned Intermediate care

8.25 END DATE (EMERGENCY INTERMEDIATE CARE STAY)

The end date that the person completed a emergency intermediate care stay

Monitor the period of time that the patient utilised emergency Intermediate care facilities which should be available for persons with dementia


30


8.26 REFERRAL DATE (24 HOUR CRISIS SUPPORT)

The date the person was referred for 24 Hour Crisis Support services

Monitor the uptake of 24 hour crisis support services which should be available if required for persons with dementia


This is the role in the organisation of the referring source for the 24 hour crisis support services


8.28 START DATE (24 HOUR CRISIS SUPPORT SERVICES)

The start date that the person used 24 hour crisis support services


8.29 END DATE (24 HOUR CRISIS SUPPORT SERVICES

The end date that the person stopped using 24 hour crisis support services

Monitor the period of time that the patient utilised 24 hour crisis support services

8.30 24 HOUR SUPPORT CRISIS SUPPORT SERVICE USED

The actual service(s) that the person or their carers used

Monitor uptake of specific 24 Hour support services

8.31 KEY WORKER / CARE CO-ORDINATOR

Professional role of key worker or care coordinator

8.1 Date (Consultation re: Available Services)

The date the person received a consultation explaining the various services available to patients and carers including 24-hour support Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.2 Referral Date (Hospital Provider Spell)

The date the person was referred for a hospital based provider spell. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.3 Professional Role in Organisation (Referring Source)

The role in the organisation of the referring source for hospital facilities Format is a maximum of 255 alphanumeric characters

8.4 Start Date

The start date that the person attended a hospital-based spell. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.5 End Date

The end date that the person completed a hospital-based spell. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.6 Referral Date (Day Treatment|)

The date the person was referred for a day treatment provider spell. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


The role in the organisation of the referring source for day treatment. Format is a maximum of 255 alphanumeric characters


31


8.8 Start Date (Day Treatment)

The start date that the person attended a day treatment based spell Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.9 End Date (Day Treatment)

The end date that the person completed a day treatment based spell. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.10 Referral Date (Planned Respite Facilities)

The date the person was referred for planned respite facilities. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


The role in the organisation of the referring source for planned respite facilities Format is a maximum of 255 alphanumeric characters

8.12 Start Date (Planned Respite)

The start date that the person was admitted for planned respite care. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.13 End Date (Planned Respite)

The end date that the person completed a planned respite care stay. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.14 Referral Date (Emergency Respite Facilities)

The date the person was referred for emergency respite facilities. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


The role in the organisation of the referring source for emergency respite facilities Format is a maximum of 255 alphanumeric characters

8.16 Start Date (Emergency Respite Stay)

The start date that the person was admitted for emergency respite care. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.17 End Date (Emergency Respite)

The end date that the person completed an emergency respite care stay. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.18 Referral (Planned Intermediate Care Facilities)

The date the person was referred for planned intermediate care facilities. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


The role in the organisation of the referring source for emergency intermediate care facilities Format is a maximum of 255 alphanumeric characters


32


8.20 Start Date (Planned Intermediate Care Stay)

The start date that the person was admitted for planned intermediate care. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.21 End Date (Planned Intermediate Care Stay)

The end date that the person completed a planned intermediate care stay. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.22 Referral Date (Emergency Intermediate Facilities)

The date the person was referred for emergency intermediate facilities. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


The role in the organisation of the referring source emergency intermediate care facilities. Format is a maximum of 255 alphanumeric characters

8.24 Start Date (Emergency Intermediate Care Stay)

The start date that the person was admitted for emergency intermediate care. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.25 End Date (Emergency Intermediate Care Stay)

The start date that the person was admitted for emergency intermediate care. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.26 Referral Date (24 Hour Crisis Support)

The date the person was referred for 24-hour crisis support services. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


The role in the organisation of the referring source for the 24-hour crisis support services. Format is a maximum of 255 alphanumeric characters

8.28 Start Date (24 hour Crisis Support Services)

The start date that the person used 24 hour crisis support services. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.29 End Date (24 Hour Crisis Support Services

The end date that the person stopped using 24 hour crisis support services. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

8.30 24 Hour Crisis Support Service Used

The actual service(s) that the person or their carers used. Format to be determined

8.31 Key Worker / Care Co-ordinator

The professional role of the key worker / care coordinator. Format is a maximum of 255 alphanumeric characters


33


9 Access to Benefits

Data items 9.1 to 9.4 relate to attendance and disability allowances. They originate from a number of business requirements (see below) and can be referenced back to the National Service Framework for Older People and expert opinion from the mental health WG.

Table 17 Business Requirements Linked To Access to Benefits


Comment

28 There should be access to benefits advice and benefits as required

Table 18 Data Items: Access to Benefits


9.1 ATTENDENCE ALLOWANCE

Identifies if the person is in receipt of an attendance allowance

These allowance are taken as an indicator of benefits received and are not meant to be all inclusive9.2 DISABILITY LIVING

ALLOWANCE (CARE)Identifies if the person is in receipt of a disability living allowance for care

9.3 DISABILITY LIVING ALLOWANCE (MOBILITY)

Identifies if the person is in receipt of a disability living allowance for mobility

Note parking badge is also included in the business requirements but these have been deleted from the benefits section on SAP.

9.4 INVALID CARE ALLOWANCE (CARE)

Identifies if the person is in receipt of an invalid care allowance benefit.

9.1 Attendance Allowance

Identifies if the person is in receipt of an attendance allowance. Format is 2 numeric characters to indicate Yes, No, Unknown

9.2 Disability Living Allowance (Care)

Identifies if the person is in receipt of a disability living allowance for care. Format is 2 numeric characters to indicate Yes, No, Unknown

9.3 Disability Living Allowance (Mobility)

Identifies if the person is in receipt of a disability living allowance for mobility. Format is 2 numeric characters to indicate Yes, No, Unknown

9.4 Invalid Care Allowance (Care)

Identifies if the person is in receipt of an invalid care allowance benefit. Format is 2 numeric characters to indicate Yes, No, Unknown


34


10 Care Package

Data items 10.1 to 10.12 relate to health and social care packages and plans and related dates. They originate from a number of business requirements (see below) and can be referenced back to the National Service Framework for Older People, NICE clinical guidelines and expert opinion from the mental health WG.

Table 19 Business Requirements Linked To Care Package Data Items


Comment

27 An individual care package is developed that reflects both health and social care needs of the patient according to the single assessment process

NSF Eg, day care, respite, personal care help

28 Carers of patients with dementia should undergo individual carers assessment

Carers Act SAP data item

29 An individual care package is developed that reflects both health and social care needs of the carers according to the SAP

NICE guidelines Should also identify medical co-morbidity (eg, day care, respite, personal care help)

Table 20 Data Items: Care Package


10.1 DATE (CARE PACKAGE AGREED WITH PATIENT)

The date the individual care package is agreed with the patient

To monitor good practice with respect to individual care packages

10.2 HEALTH & SOCIAL CARE RESOURCES

The health and social care resources made available

An individual care package is developed that reflects health and social care needs of the patient according to the Single Assessment Process

10.3 MANAGEMENT AGREEMENT

NOT SURE OF THE PURPOSE OF THIS ITEM?

10.4 DATE (CARE PACKAGE REVIEWED)

The date the package of care is reviewed

To monitor good practice with regard to review of the person’s care package

10.5 DATE (CARE PACKAGE AGREED WITH CARER)

The date the individual care package is agreed with the patient’s carer

To monitor good practice with respect to individual care packagesNote: Carers assessment noted on business requirements but this is captured on SAP 2.121/2.122, 3.23/3.24,3.25

10.6 HEALTH & SOCIAL CARE RESOURCES (CARER)

The health and social care resources made available

An individual care package is developed that reflects health and social care needs of the carer according to the single assessment process

10.7 DATE (CARE PACKAGE REVIEWED - CARER)

The date the package of care is reviewed

To monitor good practice with regard to review of the Carer’s care package

10.8 COPY OF CARE PLAN ON GP FILES?

Whether a copy of the care plan is held on the GP files

Monitor the proportion of GPs with copies of care plans for all their patients who should have one


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10.9 DATE OF KEYWORKER

The date when the keyworker was appointed

10.10 COPY OF CARE PLAN SIGNED BY THE SERVICE USER

Whether the patient has signed the care plan

Proportion of CPA care plans with severe mental illness signed by the service user

10.11 COPY OF CARE PLAN SIGNED BY THE CARER

Whether the Caret has signed the care plan

Proportion of CPA care plans with severe mental illness signed by the Carer

10.12 CARER HAS OWN CARE PLAN

Whether the Carer of someone with enhanced CPA also has their own written care plan

Proportion of Carers of people with advanced CPA care plans also have a care plan themselves

10.1 Date (Care package Agreed with Patient)

The date the individual care package was agreed with the patient. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

10.2 Health & Social Care Resources

The health and social care resources made available. Format is 2 numeric characters to indicate classification

10.3 Management Agreement

(Not sure of purpose of this item) Format to be determined

10.4 Date (Care Package Reviewed)

The date the package of care was reviewed. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

10.5 Date (Care Package Agreed with Carer)

The date the individual care package was agreed with the patient’s carer. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

10.6 Health & Social Care Resources (Carer)

The health and social care resources made available. Format to be determined

10.7 Date (Care Package Reviewed - Carer)

The date the care package was reviewed. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)

10.8 Copy of Care Plan on GP Files?

Whether a copy of the care plan is held on the GP files. Format is 2 numeric characters to indicate Yes, No, Not known

10.9 Date of Keyworker

The date when the keyworker was appointed. Format is 8 numeric characters with 2 spaces to indicate year-month-day: (4-2-4)


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10.10 Copy of Care Plan Signed by Service User?

Whether the patient has signed a copy of the care plan. Format is 2 numeric characters to indicate Yes, No, Not known

10.11 Copy of Care Plan Signed by Carer?

Whether the carer has signed a copy of the care plan. Format is 2 numeric characters to indicate Yes, No, Not known

10.12 Carer has Own Copy of Care Plan?

Whether the carer of someone with enhanced CPA has their own written care plan. Format is 2 numeric characters to indicate Yes, No, Not known


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11 Community Related/Epidemiological

Data items 11.1 to 11.4 relate to the person’s personal circumstances and ethnicity. They originate from a number of business requirements (see below) and can be referenced back to the National Service Framework for Older People, NICE clinical guidelines, NHS performance indicators and expert opinion from the mental health WG.

Table 21 Business Requirements Linked To Community Related/Epidemiological Data Items


Comment

30 Numbers of older people with dementia in the locality living alone and with family carers

NICE guidelines

31 Numbers of older people from minority ethnic communities with dementia in the locality living alone and with family carers

NICE guidelines

Table 22 Data Items: Community Related/Epidemiological


11.1 PERSON LIVES ALONE?

Whether the person with diagnosed dementia is living alone To monitor numbers of older people with

dementia in the locality living alone and with family carers

11.2 PERSON LIVES WITH FAMILY/CARERS

Whether the person with diagnosed dementia is living with family or carers

11.3 IS THE PERSON A CARER THEMSELF?

Whether the person with diagnosed dementia is already providing carer support to another person themselves

11.4 ETHNIC CATEGORY The ethnicity of a person as specified by the person

To monitor the ethnicity of older persons diagnosed with dementia

11.1 Person Lives Alone?

Whether the person with diagnosed dementia is living alone. Format is 2 numeric characters (to indicate Yes, No, Unknown)

11.2 Person Lives with Family/Carers?

Whether the person with diagnosed dementia is living with family or carers. Format is 2 numeric characters (to indicate Yes, No, Unknown)

11.3 Is the Person A Carer Themself?

Whether the person with diagnosed dementia is already providing carer support to another person themselves. Format is 2 numeric characters (to indicate Yes, No, Unknown)


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11.4 Ethnic Category

The ethnicity of a person, as specified by the person. Format is a alphabetical characters to indicate category


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12 Other

Data items 12.1 and 12.2 relate to the last hours of life, young onset of dementia and genetic counselling. They originate from a number of business requirements (see below) and can be referenced back to the National Service Framework for Older People, NHS performance indicators and expert opinion from the mental health WG.

Table 23 Business Requirements Linked To Other Data Items


Comment

36 Best practice is followed in the last days and hours of life

NHS indicators

(More discussion required as to what data items could practically be captured here)

37 Patient with young onset dementia

Table 24 Data Items: Other


12.1 LAST DAYS/OURS OF LIFE

To monitor best practice12.2 YOUNG ONSET OF DEMENTIA

(More discussion required on these data items)


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C Appendices

a List of Abbreviations

b Clinical Codes

c References


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a List of Abbreviations

6CIT (?)A&E Accident and EmergencyAD Alzheimer DementiaAMTS Abbreviated Mental Test ScoreCI Cholinesterase InhibitorsCPA (?)DLB Dementia with Lewen BodyDoH Department of HealthDVLA Driver and Vehicle Licensing AgencyECT Electroconvulsive TherapyERG External Reference GroupGMS General Medical ServicesGP/GMP General Practitioner/General Medical PractionerICD 10 International Classification of Diseases (version 10)IT Information TechnologyMDT Multi-disciplinary TeamMH Mental HealthMHMDS Mental Health Minimum Data SetMMSE (Folstein’s) Mini-Mental State ExamNHS National Health ServiceNHSIA NHS Information AuthorityNICE National Institute for Clinical ExcellenceNPfIT National Programme for Information TechnologyNSF National Service FrameworkNSTS NHS Strategic Tracing ServiceOP Older PeoplePCT Primary Care TrustRCP Royal College of Physicians(Read code) (Clinical code)SAP Single Assessment ProcessSnomed Systemized Terms Nomenclature of MedicineUK United KingdomV(1.2) version (1.2)WG Working Group


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b Clinical Codes

(to be completed)


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c References

Older People Information Strategy

National Service Framework for Older People

National Institute for Clinical Excellence

NHS Data Dictionary

NHS Tracing Service

NSF Medicines

Single Assessment Process for Health and Social Care for Older People


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