Change History

CDSCN 2010 / 01

All Wales Specialist Palliative Care Data Set

Data Item

Reason for collection

Options

1. REGISTRATION / IDENTIFICATION OF PATIENT

One per patient

1.1

NHS number

To assist in the accurate identification of patients.

1.2

Date of birth

To assist in the accurate identification of patients.

To enable age at referral to be established for analysis.

1.3

Sex

To assist in the accurate identification of patients.

To enable analysis of referral by sex.

• Male

• Female

• Not specified

1.4

Name and address of GP practice

To enable the specialist palliative care service to contact the GP practice and share patient information.

To enable analysis of referral practice by GP practice.

1.5

Ethnic Group

To enable analysis of referral by ethnic group to ensure an equitable service is being provided to the whole community.

•  Any white background

•  Mixed white and black Caribbean

•  Mixed white and black African

•  Mixed white and Asian

•  Any other mixed background

•  Indian and British Indian

•  Pakistani or British Pakistani

•  Bangladeshi or British Bangladeshi

•  Any other Asian background (other than Chinese)

•  Black Caribbean or black British Caribbean

•  Black African or black British African

•  Any other black background

•  Chinese

•  Any other ethnic group

•  Not stated

1.6

Religion or belief

To assist in the provision of holistic care for the patient if the patient informs the service of their religion or belief.

1.7

Preferred language (spoken)

To alert the service if a patient’s language is not English so that appropriate arrangements can be made to assist communication.

2. LOCAL PATIENT IDENTIFIER

One or more per patient

2.1

Case record number at an organisation or service

To assist in the accurate identification of patients.

To facilitate the location of patient information within other organisations caring for the patient.

3. PATIENT NAME

One or more per patient

3.1

Patient name(s)

To assist in the accurate identification of patients to avoid duplicate registration. For this purpose, any name by which the patient is (or has been) known should be able to be accessed.

3.2

Active name

To enable the specialist palliative care service to identify which is the name currently used by the patient.

4. PATIENT ADDRESS

One or more per patient

4.1

Patient address(es)

To assist in the accurate identification of patients to avoid duplicate registration. For this purpose, any address including postcode at which the patient is (or has) lived with the start and end dates where relevant should be able to be accessed.

To provide evidence of prevalence to assist commissioning and equity of access across providers.

4.2

Current address

To indicate the address agreed with the patient at which the patient is currently residing to aid contact and communication. For this purpose, only one address can be current at a particular time.

4.3

Permanent or temporary address

To show whether any address is permanent or temporary to avoid duplicate registration if the patient is residing at a temporary residence.

4.4

Active or inactive address

To indicate whether any address is currently active i.e. could be used by the patient as a residence, to assist in accurate identification and prevent duplicate registration if the patient has moved residence.

For this purpose only one permanent address can be active at any one time: more than one temporary address can be active at any one time.

4.5

Local Health Board

To provide data for planning as evidence of prevalence when used with numbers of patients in area and equity of services within LHB code area.

5. DIAGNOSIS

One or more per patient

5.1

Diagnosis

To identify the underlying condition as defined by the Primary Professional which has caused the specialist palliative care team to be involved.

To share the diagnosis with members of the specialist palliative care team

To inform other multidisciplinary teams of specialist palliative care team involvement for this condition

To allow analysis of caseload according to diagnosis.

To provide information on patterns of use of services according to diagnosis.

Read Code

6. REFERRAL

One or more per diagnosis

6.1

Source of specialist palliative care referral

To identify patterns of referral.

•  Following an emergency admission

•  Primary Care: OOH

•  Primary Care: Community

•  Primary Care: Emergency

•  Another SPCT in the secondary/acute service

•  Planned non-SPCT in a secondary/acute service

•  Self-referral

•  Another SPCT non statutory

•  Other source of referral (will include referrals from Private Healthcare)

6.2

Name of specialist palliative care team receiving referral

To identify the team giving care to the patient.

To enable analysis by specialist palliative care team.

To identify different specialist services involved in one individual’s care. 

6.3

Primary professional name

To identify the health care professional ultimately responsible for patient care.

To assist communication across specialist services

6.4

Primary professional type

To identify the professional type of the primary professional

To identify patients accessing care from a consultant led service.

6.5

Date of specialist palliative care referral

To establish the date on which the referrer first initiates referral to the specialist palliative care team.

To facilitate audit of responsiveness of service.

6.6

Priority of specialist palliative care referral as defined by referrer

To assist in monitoring patients referred to the specialist palliative care team for urgent review of uncontrolled symptoms.

To facilitate audit of responsiveness of service.

•  Urgent referral for uncontrolled symptoms

•  Other

7. FIRST ASSESSMENT

None or one per referral

7.1

Date first assessed by a member of the specialist palliative care team

To facilitate audit of responsiveness of service.

7.2

Reason for delay in being assessed

To enable reflection on service provision and consider service developments when necessary.

• Patient choice

• Clinical Reason

• Logistic Reason

• DNA - reason unspecified

• Other, specify

• Not known

[multiple responses possible]

8. ALLERGIES AND ADVERSE REACTIONS

None, one or more per patient

8.1

Alert type

To alert health care professionals that the patient has an allergy or has experienced an adverse reaction to a substance.

• Allergy

• Adverse reaction

8.2

Cause of allergy or adverse reaction

To inform health care professionals of the substance which causes an allergy or adverse reaction to prevent future problems.

8.3

Comment on allergy or adverse reaction

To alert health care professionals of any other relevant information about the nature of the allergy or adverse reaction.

9. DEATH

None or one per patient

9.1

Date of death

To alert providers of care of the patient’s death in order to prevent inappropriate contact.

To enable reporting of deaths which occur while a patient is receiving specialist palliative care to the National Council for Palliative Care.

9.2

Place of death

To enable reporting of place of death to the National Council for Palliative Care

•  Patient’s home (including home of relative or carer)

•  Care home

•  Hospice/specialist palliative care unit

•  Community hospital

•  Acute hospital

•  Other