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DSC Notice: 23/2000* Date of Issue: December 2000 NHS ISB NHS Information Standards Board Subject: Monitoring the "two week" standard for all suspected cancers. Implementation date: For Breast Cancer - Immediate For All Cancers - 01 January 2001 DATA SET CHANGE CONTROL PROCEDURE This paper gives notification of changes to be included in the NHS Data Dictionary, the NHS Data Manual and the NHS CDS Manual in due course. Summary of change: An expansion to the QMCW central return to (i) include all cancers; (ii) introduce additional timebands for patients seen outside of 14 days. Summary of impact: Please see paragraph 12. Change Proposal Reference No: 40/99 The NHS Information Standards Board (ISB), established by the NHS Information Authority, is responsible for approving information standards. The NHS ISB is supported by the Management Information Standards Board, Clinical Data Standards and Technical Standards sub-boards. *The DSCN Number Format has been changed to denote the new arrangements as follows: sequence number/year of issue (ccyy). The service identifier and service sequence number are redundant owing to changes in practice and have been removed. The packaging of standards documentation is under review. Any changes will be notified in due course. Please address enquiries about this DSCN to the Data Standards Team, NHS Information Authority, Aqueous II, Aston Cross, Rocky Lane, Birmingham B6 5RQ Tel: 0121 333 0237 or to the nominated enquiry point. Data Set Change Notices are located on the Internet in the Electronic Library at http://www.standards.nhsia.nhs.uk/library/index.htm and on the NHSnet at http://nww.standards.nhsia.nhs.uk/library/index.htm DATA SET CHANGE NOTICE 23/2000 Reference: CP40/99 Version No: 1.0 Subject: Monitoring the "two week" standard for all suspected cancers Type of Change: An expansion to the QMCW central return to (i) include all cancers; (ii) introduce additional timebands for patients seen outside of 14 days. Effective Date: Immediate for reporting on length of wait by additional timebands for suspected breast cancer patients. Data collection for “all cancers” will commence on 01 January 2001, reporting will commence on 31 March 2001. Effect on NHS Data Dictionary: Minor revisions of classifications within FUNCTIONAL GROUP and the attribute URGENT CANCER REFERRAL TYPE. Effect on Central Returns: Change to central return – QMCW (see ANNEX 2) Frequency of Collection: Quarterly Introduction: 1. This DSCN introduces an amendment to the QMCW central return to monitor performance against the two week waiting times target for all patients who are referred urgently with suspected cancer as stated in the White Paper, The new NHS. The return currently monitors performance against the two week standard for suspected breast cancer patients. Background: 2. Central returns already exist for the collection of outpatient waiting times data - the QM08 (from NHS Trusts on a provider basis) and the QM08R (from Health Authorities on a responsible population basis). These returns collect information broken down by consultant specialty and, therefore, it is not possible to obtain the required information from these returns as they stand. The QMCW return has been collecting information quarterly on the waiting time for suspected breast cancer patients since 1 April 1999. Implementation DSCN 23/2000 Page 2 of 18 3. Implementation of the new QMCW will be in two stages: (i) (ii) Stage 1 – the Breast Cancer form set, including the additional timebands, for which implementation is required immediately. Trusts should provide quarterly information with immediate effect. Stage 2 – the All Cancers form set for which the implementation date for commencement of data collection is 01 January 2001; the date for reporting is 31 March 2001. The Revised QMCW: 4. The new QMCW central return will monitor performance against the "two week" standard for all patients urgently referred by their GP (or General Dental Practitioner) for suspected cancer, by tumour site. The return will continue to be collected on a "host" Health Authority basis with information required for individual NHS Trusts. The return will collect information for each tumour site separately as identified in HSC 1999/205 and HSC 2000/013, these are: Breast Children’s Cancers (Children are defined as those patients who are under 16 years of age). Lung Haematological malignancies including leukaemia Upper Gastrointestinal Cancers Lower Gastrointestinal Cancers Skin Cancers Gynaecological Cancers Brain/Central Nervous System Tumours Urological Cancers Head and Neck Cancers Sarcomas Other Cancers 5. The return counts the number of patients seen under the "two week" rule who were seen within 14 days of their GP (or GDP) deciding they need to be seen urgently by a specialist and the number of patients who were seen outside of the 14 day period. Another change is that the reporting of patients seen outside of 14 days will be split into separate timebands, i.e. 15-16 days, 17-21 days, 21-28 days and over 28 days (immediately for monitoring of the breast cancer standard). Monitoring will continue to distinguish between those referrals received within 24 hours of the decision to refer and those which were not. The QMCW form provides categories for each of these. [Note: a referral will be considered to have been received within 24 hours if it is received by the next calendar day after the date the GP (or GDP) decided to refer the patient.] 6. Further clarification to the definition of “specialist”. A specialist means that person or persons who are most able to progress the diagnosis and treatment in a timely fashion or re-refer where necessary. The specialist will be working in or attached to a multi-disciplinary specialist team in a consultant-led outpatient clinic or endoscopy unit. Where the urgent DSCN 23/2000 Page 3 of 18 two-week referral is for endoscopy, patients should be included on the QMCW wherever possible in the same way as referral to an outpatient clinic. 7. The QMCW is required to be returned to the NHS Executive by the 25th working day after the end of the quarter. Argument: 8. The New NHS guarantees that: 'Everyone with suspected cancer will be able to see a specialist within two weeks of their GP deciding they need to be seen urgently and requesting an appointment. By April 1999 for breast cancer and by 2000 for all other cancers.' Achievement of the above standard is a priority within the National Priorities Guidance and Ministers wish to monitor performance against the “all cancers” standard quarterly. 9. The standard specifically states that the patient should be seen within two weeks of the "GP deciding they need to be seen", which is why the waiting time, for the purposes of the QMCW, will start from the date that the GP (or GDP) decides to refer rather than the point at which the NHS Trust receives the referral - which is the case for the QM08 and QM08R returns. 10. The timeband information has been requested through exception reports and is now required a part of the central return. The change in the deadline of 25 days after the quarter end rather than the 30 days in the first year of collection will enable us to make better use of the data in the Department’s quarterly reports to Ministers. 11. Detailed guidance on definitions are attached as ANNEX 1 and will be also sent out with the return. 12. The impact of these changes is estimated to be approximately 1.5 – 2 person days per quarter per trust; also some adjustments to local PAS systems may be required. Clearance: 13. This new return has been developed in consultation with cancer policy colleagues, regional cancer leads and representatives from NHS Trusts and Health Authorities. Also, the data collection has been approved by the Review of Central Returns Committee (ROCR). DSCN 23/2000 Page 4 of 18 Summary: 14. In order to monitor performance against the "two week" waiting times standard for all patients who are urgently referred by their GP (or GDP) for suspected cancer as stated in The New NHS, the new QMCW central return will cover all suspected cancer patients. The new return will be collected quarterly from Health Authorities. The additional timebands will be collected for the breast cancer standard immediately, collection of data for monitoring “all cancers” will begin on 01 January 2001 with reporting commencing on 31 March 2001. Additional Information: 15. Any queries relating to the monitoring of the “two week” standard should be addressed to: Steven Roberts NHS Executive Room 4N17 Quarry House Quarry Hill Leeds LS2 7UE Tel:0113 254 5455 Fax: 0113 254 5520 E-mail: [email protected] For any other queries on achieving the “two week” standard please contact: Triona Norman NHS Executive Room 309 Wellington House London SE1 8UB Tel:020 797 24210/4817 Fax: 020 797 24849 E-mail: [email protected] DSCN 23/2000 Page 5 of 18 ANNEX 1 Guidance for monitoring the two week waiting times standard for all suspected cancer patients (QMCW) The “Two Week” Standard 1. The new NHS states that: Everyone with suspected cancer will be able to see a specialist within two weeks of their GP deciding they need to be seen urgently and requesting an appointment. By April 1999 for breast cancer and by 2000 for all other cancers. General 2. The QMCW return is to be completed by each Health Authority for all NHS Trusts for which they are the “host” Health Authority broken down by individual NHS Trust. 3. HSC 1998/242 and 1999/205 contain information on defining the two week standard and the specific steps necessary to develop referral pathways and agree criteria for urgent referral. Definitions Urgent 4. It is the GP (or General Dental Practitioner) who decides in the light of the new national guidelines whether a patient needs to be seen urgently and requires a specialist outpatient appointment within the “two week” period. Every referral made under the “two week” rule should be clearly identified as urgent and include the decision to refer date. 5. Referral guidelines to help identify suspected cancer were published and circulated to a wide range of people in the NHS and other interested bodies in March 2000. 24 Hours 6. A referral will be considered to have been received within 24 hours if it is received by the end of the next calendar day from the date the GP (or GDP) decides to refer the patient (this is to ensure that Trusts have the maximum possible time to arrange an appointment within 14 days). NHS Trusts and Health Authorities are asked to work with Primary Care Groups/Trusts and GPs to maximise the number of referrals received within 24 hours. DSCN 23/2000 Page 6 of 18 Specialist 7. A specialist means that person or persons who are most able to progress the diagnosis and treatment in timely fashion or re-refer where necessary. The specialist will be working in or attached to a multi-disciplinary specialist team in a consultant-led outpatient clinic or endoscopy unit. Where the urgent two week referral is for endoscopy, patients should be included on the QMCW wherever possible in the same way as referral to an outpatient clinic. The waiting time should be calculated from the date the GP decides to refer the patient to the date seen. All referral routes need to be agreed by Primary Care Groups and Primary Care Trusts, and widely disseminated within local cancer networks. Waiting time 8. The waiting time, measured in calendar days, will start from the date that the GP decides to refer and will be subject to the GP making the referral and the NHS Trust receiving the referral within 24 hours (by the end of the next calendar day) of the decision to refer being made. The date of the decision to refer will be included on the referral letter (if any referral letter does not include the decision to refer date, the waiting time should be measured from the date of the letter or ‘phone call whichever is the earlier). The waiting time will end on the day that the patient is seen by a specialist for their first outpatient appointment. Patients who refuse an offer of an appointment 9. Patients’ views should be considered when monitoring the two week rule and some patients might, for social or personal reasons, decline an appointment within 14 days. The waiting time of those patients who are offered an appointment but turn it down should be calculated from the date of the last appointment they were offered. 10. If a patient makes it clear that they do not want an appointment within 14 days before an offer is made, e.g. because they are going on holiday, the patient should be excluded from the QMCW return and monitoring of the “two week” standard until the date when they become available for an appointment. Patients who do not attend (DNA) their outpatient appointment 11. The waiting time of patients who do not turn up, whether giving advance warning or not, for their first outpatient attendance with a specialist should be calculated from the date of the last appointment for which they did not attend. 12. Patients who are referred back to their GP after a DNA should only be counted again when they are re-referred for an urgent referral. Their waiting time should be calculated from the latest decision to refer date by their GP. DSCN 23/2000 Page 7 of 18 Method of referral 13. The monitoring should relate to all methods of referrals from GPs (or GDPs) for a first outpatient appointment, including those sent by electronic mail or using a telephone direct booking system. 14. The Information for Health strategy encourages same day direct booking systems, either by electronic media or telephone. Whichever referral method is used locally, it is essential that NHS Trusts are able to identify immediately those patients being referred within the target criteria. “Everyone” 15. Patients referred with a suspected primary cancer and suspected cases of relapse should be included in the return. Referrals not received within 24 hours of the decision to refer by the 16. Monitoring of the “two week” standard will distinguish between those referrals received within 24 hours of the decision to refer and those which were not. The QMCW form provides categories for each of these. Exception reports 17. Details of any patients who are seen after 14 days of the decision to refer by their GP should be attached to the QMCW return and copied to the Regional Office (these reports should distinguish between those referrals received by the NHS Trust within 24 hours and those which were not). These reports should detail the reason for the breach of the standard and the action put in place to prevent further breaches. A report is not required for every individual patient. They should also not include information which could identify individual patients DSCN 23/2000 Page 8 of 18 ANNEX 2 New QMCW Central Return Forms DSCN 23/2000 Page 9 of 18