STANDARDS FOR UPPER GI CANCERS 2004

Transcription

1 STANDARDS FOR UPPER GI CANCERS 2004 Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 1 of 33

2 1. INTRODUCTION TO THE CANCER STANDARDS 1.1 These Cancer Standards replace the previous Minimum Standards issued in 2000 and continue the process of regularly reviewing and revising standards to maintain their relevance to the NHS in Wales. 1.2 Cancer standards define the core aspects of the service that should be provided for cancer patients throughout Wales. The standards should be used in conjunction with other requirements for example from the Health and Safety Executive, NHS, Royal Colleges and the National Institute for Clinical Excellence (NICE) recommendations and guidelines that cover patient care, facilities and staff. Trusts may provide or aim to provide additional services and work to more rigorous and/or wide-ranging standards. This should be encouraged 1.3 Since 2000 there has been significant change in organisational structures within Wales. Further, both the Scottish Office and Department of Health had issued cancer standards and the National Institute for Clinical Excellence is part way through a programme of issuing cancer service guidance for commissioners and therefore there was a pressing need to revise the existing Standards. 1.4 The Cancer Standards build on those published in 2000 and are intended to keep Wales abreast of cancer standards in the UK. The minimum standards of 2000 therefore form the basis of this set of standards with a limited number of additional new standards. In some cases the new standards, supported by evidenced-based national guidance, will be challenging for example those involving surgical re-organisation. It is recognised that such changes take time and resource to implement and it will therefore be important that the process of implementation is planned to start as soon as possible. Commissioners and providers, as Cancer Network stakeholders, will need to work with each Cancer Network core team of Lead Clinician and Manager to plan and deliver the service changes required. 1.5 The Cancer Services Co-ordinating Group [CSCG] have been tasked by the Welsh Assembly Government to oversee the development of cancer standards. For this latest revision the Cancer Standards Group of the CSCG has worked with the CSCG cancer site steering groups and patient forum to develop the standards. 1.6 This document covers both generic and cancer specific standards. To distinguish these, generic standards are in black with cancer specific in SMALL CAPS AND BLUE Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 2 of 33

3 2. Introduction to Upper Gastro-oesophageal Cancer 2.1 Cancer standards define the core aspects of the service that should be provided for cancer patients throughout Wales. The standards should be used in conjunction with other requirements for example from the Health and Safety Executive, NHS, Royal Colleges and the National Institute for Clinical Excellence (NICE) recommendations and guidelines that cover patient care, facilities and staff. 2.2 The Upper GI Cancer Standards include the care of patients with oesophago gastric, pancreatic and hepatobilary tumours and have been drawn together by the CSCG All Wales Upper Gastrointestinal Cancer Steering Group, in consultation with specialists from across Wales. 2.3 Upper GI cancers rarely requires emergency care and it should, therefore, be practical for every case of upper GI cancer to be managed primarily by the designated upper GI surgeon(s) or gastroenterologist(s) who will be part of the local Trust Upper GI cancer MDT or the specialist Network level Upper GI Cancer MDT. Referral to the specialist Network MDT will require planning and co-ordination between clinical teams that will be facilitated by the Network which brings together both providers and commissioners of care. 2.4 The above arrangements will ensure that all patients with upper GI cancer will have access to a uniform process of specialist care. 2.5 Specialist oesophago gastric pancreatic and hepato-biliary MDTs may in some circumstances regularly meet and function together. Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 3 of 33

4 TABLE OF CONTENTS AND SUMMARY OF STANDARDS DRAFT STANDARDS FOR UPPER GI CANCERS INTRODUCTION TO THE CANCER STANDARDS Introduction to Upper Gastro-oesophageal Cancer... 3 TOPIC: ORGANISATION... 9 OBJECTIVE 1: TO STRUCTURE CANCER NETWORKS SUCH THAT THEY BRING TOGETHER KEY STAKEHOLDERS IN BOTH COMMISSIONING AND PROVIDING CANCER CARE, WITH AN OPEN AND TRANSPARENT MANAGEMENT STRUCTURE Network management arrangements and accountability should be documented The justification for configuration of services should be detailed in the Network Service Delivery Plan [SDP] Commissioners and providers as stakeholders of the Cancer Network must work with the Network team to identify priorities and agree an appropriate programme for implementation. 9 OBJECTIVE 2 : CARE PROVIDED BY TEAMS SHOULD BE WELL CO-ORDINATED TO PROVIDE AN EFFICIENT, EFFECTIVE SERVICE TO PATIENTS There should be a named lead clinician in the trust with overall responsibility for monitoring & reviewing the effective running of cancer services The TCLC should be appointed by the Trust Chief Executive and have recognised dedicated sessional time with administrative and senior management support The TCLC should attend both trust and network cancer meetings as appropriate The TCLC should ensure compliance with cancer standards is monitored annually and reported to senior Trust management and the Network The lead clinicians of the local, network or supra network oesophago gastric, pancreatic and hepatobiliary MDTs should be confirmed by the Cancer Network Board in consultation with their respective Trust Cancer Lead Clinician and Medical Director The lead clinicians for the upper GI cancer teams should have overall responsibility for the team meeting, clinical audit and service modernisation The lead clinicians for the upper GI cancer teams should have access to dedicated co-ordinating and secretarial services The lead clinicians for the specialist Upper GI cancer teams should attend both trust and network cancer meetings as appropriate OBJECTIVE 3 : TO PROVIDE AN INTEGRATED NETWORK OF CANCER CARE Written referral pathways should be drawn up by MDTs in collaboration with primary care which detail the patient journey from whichever point patients access the system EACH NETWORK SHOULD CONFIGURE SERVICES SO THAT RADICAL TREATMENT FOR OESOPHAGO GASTRIC, PANCREATIC AND HEPATOBILIARY CANCER IS UNDERTAKEN BY THE APPROPRIATE NETWORK OR SUPRA NETWORK MDT The Network should ensure that referral pathways are adhered to particularly where pathways cross trust or network boundaries TOPIC: PATIENT-CENTRED CARE OBJECTIVE 4: TO ENSURE THAT PATIENTS AND OR THEIR CARERS HAVE ALL THE INFORMATION THEY REQUIRE REGARDING THE DIAGNOSIS, TREATMENT OPTIONS AND TREATMENT CARE PLAN An information pack should be provided for each new cancer patient which should include a) general background information about the specific cancer b) Detail of treatment options, specific local arrangements including information about the MDT and support services and who the patient should contact if necessary c) Details of local self-help/support groups and other appropriate organisations The specialist nurse or other person designated by the MDT should be responsible for ensuring written information is offered to all new patients A designated person/s should be responsible for ensuring that written information is generally available in appropriate wards/outpatient areas and is checked and replenished when necessary Healthcare professionals with direct patient contact and especially those involved in breaking bad news, should have evidence of approved communication skills training and assessment Healthcare professionals should periodically receive training to maintain communication skills The MDT should agree a communication policy regarding communication between members of the team and the patient, which specifically incorporates breaking bad news Trusts should ensure all communication with patients with special needs in relation to language, culture and physical or learning disabilities is addressed Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 4 of 33

5 4.8 There should be access to a private room or area where patients and or their carers can discuss the diagnosis in conditions of adequate privacy with the appropriate member of the MDT Patients should be given time to consider treatment options OBJECTIVE 5: TREATMENT CARE PLANS NEED TO ADDRESS PSYCHOLOGICAL AND PRACTICAL NEEDS OF PATIENTS Patients found to have significant levels of anxiety and or depression should be offered prompt access to specialist psychological or psychiatric care capable of providing level 3 and level 4 psychological interventions as defined in the NICE Supportive and Palliative Care Guidance Cancer Networks should facilitate a network wide approach to psychological support services as recommended in NICE Supportive and Palliative Care Guidance for Adults with Cancer TOPIC: MULTIDISCIPLINARY TEAM OBJECTIVE 6 : TO ENSURE THAT UPPER GI CANCER CARE IS PROVIDED BY A SPECIALIST MULTIDISCIPLINARY TEAM ALL CLINICIANS TREATING UPPER GI CANCER SHOULD BE PART OF THE LOCAL OR SPECIALIST MULTIDISCIPLINARY TEAM THE LOCAL UPPER GI TEAM SHOULD INCLUDE THE FOLLOWING SPECIALISTS A. A DESIGNATED LEAD CLINICIAN (NORMALLY A PHYSICIAN OR SURGEON) B. ONE OR MORE DESIGNATED PHYSICIANS OR SURGEONS SPECIALISING IN GASTROENTEROLOGY C. ENDOSCOPIST D. ONCOLOGIST E. PALLIATIVE PHYSICIAN/NURSE MEMBER OF THE SPECIALIST PALLIATIVE CARE TEAM F. HISTOPATHOLOGIST G. RADIOLOGIST WITH EXPERTISE IN CROSS-SECTIONAL IMAGING (US, CT, MR) H. A CLINICAL NURSE SPECIALIST WITH KNOWLEDGE OF ENDOSCOPY THE SPECIALIST MDTS SHOULD INCLUDE THE FOLLOWING SPECIALISTS WITH A MAJOR INTEREST IN OESOPHAGO GASTRIC, PANCREATIC AND LIVER TUMOURS SURGEONS A. CROSS SECTIONAL IMAGING RADIOLOGIST B. INTERVENTIONAL RADIOLOGIST C. PATHOLOGIST D. GASTROENTEROLOGIST E. ANAESTHETIST F. RADIATION ONCOLOGIST G. CHEMOTHERAPIST MEDICAL OR CLINICAL ONCOLOGIST H. PALLIATIVE CARE PHYSICIAN/NURSES I. CLINICAL NURSE SPECIALISTS IN UPPER GI CANCERS J. DIETICIAN K. MDT CO-ORDINATOR/DATA CLERK THE SPECIALIST MDT SHOULD HAVE CONTACT & APPROPRIATE ACCESS TO THE FOLLOWING SUPPORT SERVICES, A. PRIMARY CARE TEAM B. PSYCHOLOGY/PSYCHIATRY C. SOCIAL WORK D. OT THE SPECIALIST MDT SHOULD HAVE MECHANISMS TO ASSESS FITNESS FOR SURGERY A. DECIDE ON STAGING INVESTIGATIONS B. ASSESS APPROPRIATENESS FOR SURGERY C. ASSESS THE NEED FOR SHORT OR LONG-TERM PALLIATION WITH AT LEAST 2 ENDOSCOPIC METHODS OF PALLIATION AVAILABLE Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 5 of 33

6 D. PROVIDE ADDITIONAL NUTRITION IF APPROPRIATE E. PROVIDE AN ONCOLOGICAL OPINION A weekly team meeting should form the basis of clinical management and inter-team communication The MDT should agree a means of rapid communication to facilitate clinical management of appropriate cases should they present after the regular team meeting The MDT should ensure that the all Wales Cancer Data Set is completed for each new patient TOPIC: INITIAL INVESTIGATIONS & DIAGNOSIS OBJECTIVE 7 : PATIENTS WITH UPPER GI CANCER SHOULD BE REFERRED AND DIAGNOSED PROMPTLY Written locally agreed, clinical policies, in-line with national guidelines for upper GI cancer, should be provided by the Network Upper GI cancer site advisory group for use by the Network MDTs GP s should ensure that patients presenting with alarm symptoms are categorised as urgent with suspected upper GI cancer & referred to the appropriate upper GI cancer team. Referral symptoms should be revised following publication of NICE guidance Referrals from primary care, confirmed as urgent by a member of the MDT or their representative, and diagnosed with cancer should start definitive treatment within 2 months of receipt of the referral at the hospital PATIENTS PRESENTING TO THEIR GP AGED MORE THAN 45 YEARS WITH NEW DYSPEPSIA OR A CHANGE IN DYSPEPTIC SYMPTOMS SHOULD BE OFFERED AN APPOINTMENT FOR ENDOSCOPY WITHIN 6 WEEKS OF THE RECEIPT OF THE REFERRAL Patients not referred as urgent cases with suspected cancer but subsequently diagnosed with upper GI cancer should start definitive treatment within 1 month from diagnosis Confirmation of the diagnosis of upper GI cancer should reach the GP within 24 hours of the patients being informed OBJECTIVE 8: PATIENTS SHOULD HAVE ACCESS TO HIGH QUALITY IMAGING SERVICES Imaging departments should provide clear, written information to MDTs on the range of investigations provided, and their availability. Where availability is limited or intermittent, particularly for complex investigations, there should be written alternative referral pathways agreed with the Cancer Network All Departments of Clinical Radiology should have written policies on the referral and imaging investigation of patients with cancer or suspected cancer by cancer site. These should reflect the latest advice from the Royal College of Radiologists Standardised imaging protocols for staging studies should be agreed within each cancer network Staging should be reported in a standardised format agreed within each cancer network All reports should, as a minimum, allow assessment of that component of TNM status which relies on diagnostic radiology Each MDT should have a mechanism for access to specialist opinion for radiological diagnosis and staging where appropriate Specialist radiologists should have regular sessions in their area of expertise identified in their job plan OBJECTIVE 9: ALL PATIENTS SHOULD HAVE ACCESS TO HIGH QUALITY PATHOLOGY SERVICES All pathology laboratories should participate in Technical External Quality Assessment [EQA] and Clinical Pathology Accreditation [CPA] Reports on resection specimens should comply with all items of the pathology component of the Welsh cancer data sets Each MDT has a mechanism for access to specialist opinion for histopathological diagnosis and classification where appropriate Each Cancer Network or group of networks has designated specialist histopathologists TOPIC: TREATMENT OBJECTIVE 10 : SURGICAL MANAGEMENT OF UPPER GI CANCER PATIENTS REQUIRES APPROPRIATELY DESIGNATED, STAFFED & RESOURCED FACILITIES UPPER GI CANCER PATIENTS SHOULD BE MANAGED BY A SPECIALIST UPPER GI MDT WITH CARE PROVIDED BY THE LOCAL & SPECIALIST MDT AS AGREED BY THE NETWORK THE LOCAL UPPER GI MDT AND SPECIALIST UPPER GI MDT SHOULD AGREE REFERRAL GUIDELINES IN-LINE WITH IOG GUIDANCE AND AS AGREED BY THE NETWORK MAJOR CURATIVE RESECTIONAL SURGERY SHOULD BE CARRIED OUT BY A SPECIALIST GASTRO OESOPHAGEAL, PANCREATIC OR HEPATOBILIARY MDT. SURGICAL PROCEDURES SHOULD BE CARRIED OUT IN APPROPRIATE CENTRES AND INCLUDE, Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 6 of 33

7 A. PARTIAL AND TOTAL GASTRECTOMY INCLUDING, IN SELECTED CASES, EXTENDED LYMPHADENECTOMY B. SUBTOTAL OESOPHAGECTOMY C. LARYNGO/PHARYNGO OESOPHAGECTOMY IN ASSOCIATION WITH SPECIALIST WITH SPECIALIST ENT SURGEONS D. PANCREATECTOMY E. LIVER RESECTION HOSPITALS PROVIDING UPPER GI CANCER SURGICAL SERVICES MUST PROVIDE EMERGENCY ACCESS FACILITIES FOR PATIENTS WITH POST-OPERATIVE COMPLICATIONS TO ENSURE CONTINUITY OF CARE SURGEONS SHOULD BE BACKED UP BY DEDICATED ANAESTHETIC & THEATRE STAFF, SPECIALIST NURSES, APPROPRIATE INTENSIVE CARE & HIGH DEPENDENCY FACILITIES & EMERGENCY RADIOLOGICAL SUPPORT BY COLLEAGUES WITH EXPERIENCE TO PROVIDE COVER DURING ABSENCE OR ILLNESS ANAESTHETISTS SHOULD BE EXPERIENCED IN THORACIC EPIDURAL & ONE-LUNG VENTILATION TECHNIQUES AND ANAESTHESIA FOR LIVER RESECTION Patients should be given the opportunity to enter approved clinical trials for which they fulfil the entry criteria OBJECTIVE 11 : TO ENSURE PATIENTS RECEIVE RADIOTHERAPY WHICH IS PLANNED, PRESCRIBED, DELIVERED, AND SUPERVISED IN A SAFE AND EFFECTIVE MANNER Patients undergoing radical radiotherapy as their primary curative therapy should be treated within 1 month as recommended by the JCCO as the maximum accepted delay Patients receiving radiotherapy should be treated according to an agreed, documented policy or in a formal clinical trial Equipment capable of delivering conformal radiotherapy should be available to each network All radiotherapy centres should have a recognised quality system accredited by an authorised standards institution to a recognised standard Equipment capable of delivering Intensity Modulated Radiotherapy should be available to each network OBJECTIVE 12: TO ENSURE PATIENTS RECEIVE CHEMOTHERAPY WHICH IS PLANNED, PRESCRIBED, DELIVERED, AND SUPERVISED IN A SAFE AND EFFECTIVE MANNER Chemotherapy should be administered using an appropriate, documented protocol based on national guidance, incorporating the recommendations of NICE and JCCO Trusts preparing chemotherapy should have a policy to cover the personnel, procedure, administration, of chemotherapy, and subsequent disposal of waste Chemotherapy should only be initiated by designated, senior medical staff defined by the Trust chemotherapy policies Chemotherapy should be prepared in a designated pharmacy with approved equipment that conforms to quality control standards Each Trust/hospital where cytotoxic chemotherapy is prepared and administered should have a designated pharmacist responsible for overseeing pharmacy services to the ward/outpatient area where chemotherapy is administered Chemotherapy should be administered in a dedicated and suitably equipped area that contains the documentation of the chemotherapy policy and equipment for the management of emergencies such as anaphylaxis, extravasation, spillage of cytotoxics and cardiac arrest Chemotherapy nurses should have specific training in the administration of cytotoxic chemotherapy Intrathecal chemotherapy should be controlled by a process which ensures that it is only prepared, handled and administered by suitably trained personnel who appear on the intrathecal chemotherapy register for that site OBJECTIVE 13 : TO ENSURE PATIENTS ARE ONLY OFFERED EXTENDED HOSPITAL FOLLOW-UP WHERE THERE IS EVIDENCE OF SPECIFIC BENEFIT There should be agreement on the method by which patients and GPs will have access to the MDT if recurrent cancer or disease progression is suspected Networks should agree policies for follow up of different categories of cancer patients. Such policies should take account of NICE guidance, recommendations of the all Wales Cancer Steering Groups, the view of patient groups and individual patients OBJECTIVE 14: TO ENSURE THAT ALL PATIENTS RECEIVE ADEQUATE ASSESSMENT OF, AND PROVISION FOR, THEIR PALLIATIVE CARE NEEDS AT ALL TIMES AND IN EVERY SETTING. THIS INCLUDES CARE OF DYING PATIENTS, THEIR FAMILIES AND CARERS All health professionals engaged in care should receive training to allow adequate assessment and delivery of general palliative care There should be clear arrangements to access specialist palliative care services Palliative care needs should be rapidly addressed, and specialist palliative care advice available, in all settings 24 hours a day An integrated system should be in place in all care settings to ensure best practice in the multiprofessional care of dying patients. The All Wales Care Pathway for the Last Days of Life represents an appropriate model All profession-specific teams engaged in palliative care provision such as nursing, physiotherapy, occupational therapy, should have at least one member who has undergone postregistration education and training in palliative care Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 7 of 33

8 TOPIC: OUTCOMES OBJECTIVE 15: TO GENERATE MEANINGFUL AND RELEVANT DATA ON BOTH PROCESS AND OUTCOME OF CANCER CARE Trusts should ensure that the expected registration of incidence, using PEDW data, is submitted to WCISU within 3 months of calendar year end Each MDT should provide a written programme of audit to assess adherence to clinical policies Monitoring of compliance with cancer standards should be completed by MDTs and or Trusts as appropriate. Networks should collate the information for use in the commissioning process An analysis of the reasons for non compliance with standards should be undertaken and action plans drawn up as a result by the Network Radiotherapy centres should jointly agree definitions to monitor major long-term morbidity following radical radiotherapy Major long-term morbidity rates following radical radiotherapy should be monitored and kept within the nationally accepted range as recommended by the Royal College of Radiologists Major morbidity following chemotherapy in patients treated with curative intent should be monitored The MDT should participate in all Wales clinical audits as specified by the CSCG all Wales Cancer Steering Groups The MDT should participate in Network-wide clinical audit Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 8 of 33

9 TOPIC: ORGANISATION OBJECTIVE 1: TO STRUCTURE CANCER NETWORKS SUCH THAT THEY BRING TOGETHER KEY STAKEHOLDERS IN BOTH COMMISSIONING AND PROVIDING CANCER CARE, WITH AN OPEN AND TRANSPARENT MANAGEMENT STRUCTURE. Rationale A Cancer Network is an organisational association between primary, secondary, tertiary & voluntary sector providers & commissioners with care delivered by multidisciplinary clinical teams within a geographic area. Regular meetings between commissioners and providers, as stakeholder organisations, will facilitate review of service provision and ensure uniform standards of care are applied across the network. The Network will need mechanisms in place to action reorganisation of services where appropriate Each Network should produce a Services Development Plan [SDP] 1 which will inform the commissioning process and involve Local Health Boards & Health Commission Wales. It is recognised that where appropriate the SDP will need to involve collaboration between Networks. The SDP will involve all stakeholder organisations and be advised by local cancer site groups that are multidisciplinary and represent the MDTs for that cancer site or group of cancers within the network. STANDARD 1.1 Network management arrangements and accountability should be documented. 1.2 The justification for configuration of services should be detailed in the Network Service Delivery Plan [SDP] 1.3 Commissioners and providers as stakeholders of the Cancer Network must work with the Network team to identify priorities and agree an appropriate programme for implementation MONITORING 1.1 Documentation detailing Network management accountability 1.2 The Network SDP, approved by the Network Board, is available for external peer review 1.3 Regional Offices to monitor implementation of Network priorities. 1 SaFF Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 9 of 33

10 OBJECTIVE 2 : CARE PROVIDED BY TEAMS SHOULD BE WELL CO-ORDINATED TO PROVIDE AN EFFICIENT, EFFECTIVE SERVICE TO PATIENTS Rationale: Cancer care involves a number of different specialists working together as a team. To effectively work as a team, particularly across Departments within a Trust, co-ordination and clinical leadership is required. The Trust Cancer Lead Clinician [TCLC] is accountable to the Trust Board via the Medical Director and is responsible for identifying requirements to ensure cancer teams comply with the cancer standards. The Upper GI cancer Team Lead Clinician is accountable to the Trust Cancer Lead Clinician or clinicians if the team provides services to more than one trust and is responsible for identifying requirements to ensure the Upper GI cancer team complies with the Upper GI cancer standards STANDARD 2.1 There should be a named lead clinician in the trust with overall responsibility for monitoring & reviewing the effective running of cancer services 2.2 The TCLC should be appointed by the Trust Chief Executive and have recognised dedicated sessional time with administrative and senior management support 2.3 The TCLC should attend both trust and network cancer meetings as appropriate 2.4 The TCLC should ensure compliance with cancer standards is monitored annually and reported to senior Trust management and the Network MONITORING 2.1Names of TCLC and MDT lead are provided 2.2 Job plan to detail role, sessional time and management support for TCLC 2.3 detailed in Job Plan 2.4 detailed in Job Plan Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 10 of 33

11 2.5 The lead clinicians of the local, network or supra network oesophago gastric, pancreatic and hepatobiliary MDTs should be confirmed by the Cancer Network Board in consultation with their respective Trust Cancer Lead Clinician and Medical Director. 2.6 The lead clinicians for the upper GI cancer teams should have overall responsibility for the team meeting, clinical audit and service modernisation 2.7 The lead clinicians for the upper GI cancer teams should have access to dedicated co-ordinating and secretarial services. 2.8 The lead clinicians for the specialist Upper GI cancer teams should attend both trust and network cancer meetings as appropriate 2.5 detailed in Job Plan 2.6 Responsibility detailed in Job Plan. Evidence will be required relating to all upper GI teams of a) regular team meetings with attendance register b) summary of clinical audit undertaken c) details of service modernisation e.g. process mapping & capacity/demand studies 2.7 detail dedicated co-ordinating and secretarial services 2.8 detailed in Job Plan Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 11 of 33

12 OBJECTIVE 3 : TO PROVIDE AN INTEGRATED NETWORK OF CANCER CARE Rationale: GPs need to be aware of the appropriate indications for referring patients with suspected cancer on an urgent basis, and all clinicians need to know what the agreed care pathways are. It is believed that outcomes will be optimised if all clinicians are working to the same set of agreed clinical policies and protocols. STANDARDS 3.1 Written referral pathways should be drawn up by MDTs in collaboration with primary care which detail the patient journey from whichever point patients access the system. MONITORING 3.1 Confirmation that the Network Manager has a copy of the agreed care pathways 3.2 EACH NETWORK SHOULD CONFIGURE SERVICES SO THAT RADICAL TREATMENT FOR OESOPHAGO GASTRIC, PANCREATIC AND HEPATOBILIARY CANCER IS UNDERTAKEN BY THE APPROPRIATE NETWORK OR SUPRA NETWORK MDT 3.3 The Network should ensure that referral pathways are adhered to particularly where pathways cross trust or network boundaries. 3.2 NETWORK DOCUMENTATION DETAILING ACCESS TO OESOPHAGO GASTRIC, PANCREATIC AND HEPATOBILIARY CANCER MDTS 3.3 Networks to provide evidence of review of agreed referral pathways Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 12 of 33

13 TOPIC: PATIENT-CENTRED CARE OBJECTIVE 4: TO ENSURE THAT PATIENTS AND OR THEIR CARERS HAVE ALL THE INFORMATION THEY REQUIRE REGARDING THE DIAGNOSIS, TREATMENT OPTIONS AND TREATMENT CARE PLAN Rationale: Appropriate information, whether provided in written form or via face to face communication, is required to support patients and their carers throughout the cancer journey. All healthcare professionals need to be sensitive to potential problems with communication with information being tailored to the needs of individual patients. Patients need appropriate information to make informed choices about their treatment. Special training can improve communication skills in general and will provide for effective communication of the diagnosis, treatment options and treatment care plan. STANDARDS 4.1 An information pack should be provided for each new cancer patient which should include a) general background information about the specific cancer b) Detail of treatment options, specific local arrangements including information about the MDT and support services and who the patient should contact if necessary. c) Details of local self-help/support groups and other appropriate organisations 4.2 The specialist nurse or other person designated by the MDT should be responsible for ensuring written information is offered to all new patients 4.3 A designated person/s should be responsible for ensuring that written information is generally available in appropriate wards/outpatient areas and is checked and replenished when necessary MONITORING 4.1 Copies of documentation to be provided 4.2 Name of responsible person & job description 4.3 Name of responsible person/s Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 13 of 33

14 4.4 Healthcare professionals with direct patient contact and especially those involved in breaking bad news, should have evidence of approved communication skills training and assessment 4.5 Healthcare professionals should periodically receive training to maintain communication skills 4.6 The MDT should agree a communication policy regarding communication between members of the team and the patient, which specifically incorporates breaking bad news. 4.7 Trusts should ensure all communication with patients with special needs in relation to language, culture and physical or learning disabilities is addressed 4.8 There should be access to a private room or area where patients and or their carers can discuss the diagnosis in conditions of adequate privacy with the appropriate member of the MDT. 4.4 a) Evidence of communication skills assessment b) evidence that the MDT has considered the views of its patients or carers where appropriate regarding communication 4.5 Evidence of successful completion of communication skills update modules 4.6 Detail of MDT communication policy 4.7 Detail audit of Trust communication policy 4.8 Details should be provided 4.9 Patients should be given time to consider treatment options 4.9 Detail in MDT communication policy Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 14 of 33

15 OBJECTIVE 5: TREATMENT CARE PLANS NEED TO ADDRESS PSYCHOLOGICAL AND PRACTICAL NEEDS OF PATIENTS Rationale: The psychological needs of patients are often not addressed 2. People cope with distressing circumstances in a number of ways however for those facing the diagnosis of initial or recurrent cancer a number will experience significant levels of anxiety and depression and may benefit from specific psychological or psychiatric therapy. STANDARDS MONITORING 5.1 Patients found to have significant levels of anxiety and or depression should be offered prompt access to specialist psychological or psychiatric care capable of providing level 3 and level 4 psychological interventions as defined in the NICE Supportive and Palliative Care Guidance Cancer Networks should facilitate a network wide approach to psychological support services as recommended in NICE Supportive and Palliative Care Guidance for Adults with Cancer 5.1 Detail access arrangements 5.2 Networks to detail access arrangements 2 National Service Framework No 1. NHS Cancer Care in England and Wales, Commission for Health Improvement, Supportive and Palliative Care, NICE, expected publication date February 2004 Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 15 of 33

16 TOPIC: MULTIDISCIPLINARY TEAM OBJECTIVE 6 : TO ENSURE THAT UPPER GI CANCER CARE IS PROVIDED BY A SPECIALIST MULTIDISCIPLINARY TEAM Rationale: Patient care needs to be provided by a team of specialists to ensure provision of high quality care taking account of a range of expertise within different specialties. IMPROVING OUTCOMES GUIDANCE RECOMMENDS LOCAL AND SPECIALIST UPPER GI CANCER MDTS AS THE CONFIGURATION TO EFFECTIVELY UTILISE RESOURCES TO ACHIEVE BEST CLINICAL OUTCOMES FOR PATIENTS. LOCAL TEAMS & SPECIALIST TEAMS PROVIDING SERVICES TO THEIR LOCAL POPULATION WILL PROVIDE THE MAJORITY OF PALLIATIVE TREATMENTS. THE SPECIALIST MDT WILL PROVIDE ADDITIONAL SERVICES INCLUDING ALL RESECTIVE SURGERY TO A LARGER POPULATION. Team working and collaboration between teams will support cover for annual leave, sick leave and holidays. Adequate cover will enable the local & specialist MDTs to function at all times. Trusts will need to co-operate to achieve sufficient activity to maintain a specialist team with appropriate resources. STANDARDS MONITORING 6.1 ALL CLINICIANS TREATING UPPER GI CANCER SHOULD BE PART OF THE LOCAL OR SPECIALIST MULTIDISCIPLINARY TEAM. 6.1 SEE 6.2 Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 16 of 33

17 6.2 THE LOCAL UPPER GI TEAM SHOULD INCLUDE THE FOLLOWING SPECIALISTS A. A DESIGNATED LEAD CLINICIAN (NORMALLY A PHYSICIAN OR SURGEON) B. ONE OR MORE DESIGNATED PHYSICIANS OR SURGEONS SPECIALISING IN GASTROENTEROLOGY. C. ENDOSCOPIST D. ONCOLOGIST E. PALLIATIVE PHYSICIAN/NURSE MEMBER OF THE SPECIALIST PALLIATIVE CARE TEAM F. HISTOPATHOLOGIST G. RADIOLOGIST WITH EXPERTISE IN CROSS-SECTIONAL IMAGING (US, CT, MR). H. A CLINICAL NURSE SPECIALIST WITH KNOWLEDGE OF ENDOSCOPY 6.3 THE SPECIALIST MDTS SHOULD INCLUDE THE FOLLOWING SPECIALISTS WITH A MAJOR INTEREST IN OESOPHAGO GASTRIC, PANCREATIC AND LIVER TUMOURS SURGEONS - A. CROSS SECTIONAL IMAGING RADIOLOGIST B. INTERVENTIONAL RADIOLOGIST C. PATHOLOGIST D. GASTROENTEROLOGIST E. ANAESTHETIST F. RADIATION ONCOLOGIST G. CHEMOTHERAPIST MEDICAL OR CLINICAL ONCOLOGIST H. PALLIATIVE CARE PHYSICIAN/NURSES I. CLINICAL NURSE SPECIALISTS IN UPPER GI CANCERS J. DIETICIAN K. MDT CO-ORDINATOR/DATA CLERK 6.2 FOLLOWING DETAILS REQUIRED, 1. NAMES OF DESIGNATED MDT MEMBERS AND DESIGNATED TIME 2. NUMBERS OF NEW UPPER GI CANCER PATIENTS MANAGED AND REGISTERED ON THE ALL WALES CANCER DATASET BY THE APPROPRIATE UPPER GI CANCER MDT SUPPORTED BY CANISC 4 3. DETAIL ACCESS ARRANGEMENTS TO THE SUPPORT SERVICES 4. DETAIL MEETINGS HELD AND ATTENDANCE 5. ARRANGEMENTS FOR COVER WHEN CORE MDT MEMBERS ARE ABSENT. 6. ABSOLUTE NUMBERS OF UPPER GI CANCER PATIENTS REFERRED TO AND/ OR MANAGED BY THE SPECIALIST UPPER GI CANCER MDT 7. DETAIL ARRANGEMENTS FOR CO-ORDINATION & SECRETARIAL SUPPORT 8. DOCUMENTATION OF REFERRAL PATHWAYS BETWEEN LOCAL & SPECIALIST MDTS 6.3 SEE Cancer Network Information System Cymru Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 17 of 33

18 6.4 THE SPECIALIST MDT SHOULD HAVE CONTACT & APPROPRIATE ACCESS TO THE FOLLOWING SUPPORT SERVICES, A. PRIMARY CARE TEAM B. PSYCHOLOGY/PSYCHIATRY C. SOCIAL WORK D. OT 6.5 THE SPECIALIST MDT SHOULD HAVE MECHANISMS TO ASSESS FITNESS FOR SURGERY A. DECIDE ON STAGING INVESTIGATIONS B. ASSESS APPROPRIATENESS FOR SURGERY C. ASSESS THE NEED FOR SHORT OR LONG-TERM PALLIATION WITH AT LEAST 2 ENDOSCOPIC METHODS OF PALLIATION AVAILABLE D. PROVIDE ADDITIONAL NUTRITION IF APPROPRIATE E. PROVIDE AN ONCOLOGICAL OPINION 6.6 A weekly team meeting should form the basis of clinical management and inter-team communication 6.7 The MDT should agree a means of rapid communication to facilitate clinical management of appropriate cases should they present after the regular team meeting 6.8 The MDT should ensure that the all Wales Cancer Data Set is completed for each new patient 6.4 SEE see Detail arrangements 6.8 Ability of the MDT to provide information to assess compliance to standards - for example numbers of new cancer cases treated for the year Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 18 of 33

19 TOPIC: INITIAL INVESTIGATIONS & DIAGNOSIS OBJECTIVE 7 : PATIENTS WITH UPPER GI CANCER SHOULD BE REFERRED AND DIAGNOSED PROMPTLY Rationale: There is evidence that higher survival rates are associated with detection and treatment of early stage, less advanced disease. Therefore it is important to support public awareness of symptoms that may indicate cancer and ensure GPs refer promptly to appropriate cancer teams for assessment and treatment if necessary. Initially efforts have been directed to ensure that patients referred urgently with suspected cancer are offered an appointment with a member of the MDT within 10 working days. This now needs to be built upon and extended to ensure that patients are not only seen promptly but also, should they be found to have cancer, should complete diagnostic investigations and start treatment within an accepted time frame that applies generally to all cancers. Shorter waiting times are required for specific cancers where clinically indicated. There is also evidence that patient anxiety contributes to worse clinical outcomes. Prompt access to see a specialist will lessen this anxiety. Patients and/or their carers may want to discuss the diagnosis & treatment with their GPs. The GP therefore needs basic information transferred rapidly in order to support such patients at a time of great distress. STANDARDS 7.1 Written locally agreed, clinical policies, in-line with national guidelines for upper GI cancer, should be provided by the Network Upper GI cancer site advisory group for use by the Network MDTs. MONITORING 7.1 Confirmation that the Network Manager has a copy of a) clinical policies. b) referral guidelines Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 19 of 33

20 7.2 GP s should ensure that patients presenting with alarm symptoms 5 are categorised as urgent with suspected upper GI cancer & referred to the appropriate upper GI cancer team. Referral symptoms should be revised following publication of NICE guidance. 7.3 Referrals from primary care, confirmed as urgent by a member of the MDT or their representative, and diagnosed with cancer should start definitive treatment within 2 months of receipt of the referral at the hospital. 7.4 PATIENTS PRESENTING TO THEIR GP AGED MORE THAN 45 YEARS WITH NEW DYSPEPSIA OR A CHANGE IN DYSPEPTIC SYMPTOMS SHOULD BE OFFERED AN APPOINTMENT FOR ENDOSCOPY WITHIN 6 WEEKS OF THE RECEIPT OF THE REFERRAL. 7.5 Patients not referred as urgent cases with suspected cancer but subsequently diagnosed with upper GI cancer should start definitive treatment within 1 month from diagnosis. 7.6 Confirmation of the diagnosis of upper GI cancer should reach the GP within 24 hours of the patients being informed 7.2 Clinical audit of referral criteria and presenting symptoms 7.3 Waiting times: a) receipt of urgent suspected cancer referrals to 1 st OP appointment b) receipt of urgent suspected cancer referrals through diagnosis, staging to start of definitive treatment to be supported by CaNISC 7.4 CLINICAL AUDIT 7.5 waiting time: diagnosis to start of definitive treatment to be supported by CaNISC 7.6 Audit of proportion patients diagnosed with cancer where information was sent to the GP within the required time scale. 5 The following alarm symptoms are based on the NHS Executive Referral Guidelines for Suspected Cancer 2000 Dyspepsia and unintentional weight loss >3kg haematemesis and/or melaena previous gastric surgery epigastric mass previous gastric ulcer unexplained iron deficiency anaemia unexplained jaundice dysphagia and/or odynophagia persistent continuous vomiting equivocal barium meal. Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 20 of 33

21 OBJECTIVE 8: PATIENTS SHOULD HAVE ACCESS TO HIGH QUALITY IMAGING SERVICES. Rationale: Imaging is important in the diagnosis and staging of many patients with cancer. Waits for imaging investigations may introduce significant delays before clinical diagnosis is confirmed and appropriate treatment can be instituted. This is particularly true for complex investigations Imaging departments need to work to high standards of service delivery that encompass management systems, waiting list management, procedural work, examination reporting, provision of clinical advice and quality assurance. In order to achieve this initial work is required to unify imaging protocols and staging reports between different hospitals. This will avoid additional unnecessary studies and make clinically meaningful comparison and review of services & outcomes possible. STANDARDS 8.1. Imaging departments should provide clear, written information to MDTs on the range of investigations provided, and their availability. Where availability is limited or intermittent, particularly for complex investigations, there should be written alternative referral pathways agreed with the Cancer Network 8.2 All Departments of Clinical Radiology should have written policies on the referral and imaging investigation of patients with cancer or suspected cancer by cancer site. These should reflect the latest advice from the Royal College of Radiologists 6 MONITORING 8.1 Copy of documentation provided to MDTs 8.2 Detail of written policies 6 a) RCR Guidelines for Doctors Making the Best Use of A Department of Radiology b) The Use of CT in the Initial Investigation of Common Malignancies c) A guide to the practical use of MRI in oncology'1999 Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 21 of 33

22 8.3 Standardised imaging protocols for staging studies should be agreed within each cancer network. 8.4 Staging should be reported in a standardised format agreed within each cancer network 8.5. All reports should, as a minimum, allow assessment of that component of TNM status which relies on diagnostic radiology Each MDT should have a mechanism for access to specialist opinion for radiological diagnosis and staging where appropriate 8.7 Specialist radiologists should have regular sessions in their area of expertise identified in their job plan. 8.3 Copies of documentation to be held by Cancer Network Manager 8.4 Copies of documentation to be held by Cancer Network Manager 8.5 Clinical audit 8.6 Detail access to specialist opinion where appropriate 8.7 Detailed in Job Plan Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 22 of 33

23 OBJECTIVE 9: ALL PATIENTS SHOULD HAVE ACCESS TO HIGH QUALITY PATHOLOGY SERVICES DRAFT STANDARDS FOR UPPER GI CANCERS 2004 Rationale: Pathology laboratories should work to high standards of service delivery that encompass management systems, diagnosis, specimen reporting, provision of clinical advice and quality assurance. Adequate and appropriate information in pathology reports is essential to inform prognosis, plan individual patient treatment, support epidemiology and research and to evaluate clinical services and support clinical governance. Specialist histopathologists should be members of a relevant specialist UK society and participate in the relevant specialised national EQA scheme. STANDARDS 9.1 All pathology laboratories should participate in Technical External Quality Assessment [EQA] and Clinical Pathology Accreditation [CPA] 9.2 Reports on resection specimens should comply with all items of the pathology component of the Welsh cancer data sets 9.3 Each MDT has a mechanism for access to specialist opinion for histopathological diagnosis and classification where appropriate 9.4 Each Cancer Network or group of networks has designated specialist histopathologists MONITORING 9.1 Certificate of participation in EQA/CPA 9.2 Audit of completeness of pathological reporting supported by CaNISC 9.3 Detail arrangements for access to specialist histopathological opinion 9.4 Detail arrangements for access to specialist histopathological opinion Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 23 of 33

24 TOPIC: TREATMENT OBJECTIVE 10 : SURGICAL MANAGEMENT OF UPPER GI CANCER PATIENTS REQUIRES APPROPRIATELY DESIGNATED, STAFFED & RESOURCED FACILITIES. RATIONALE: IMPROVING OUTCOMES GUIDANCE 7 RECOMMENDS THAT BETTER CLINICAL OUTCOMES FOR PATIENTS WILL BE ACHIEVED IF COMPLEX SURGERY IS CARRIED OUT BY SPECIALIST MDTS WITH SPECIALISTS MANAGING A LARGER NUMBER OF PATIENTS THAN OTHERWISE POSSIBLE IN A LOCAL SETTING. THIS WILL REQUIRE CLOSE COLLABORATION BETWEEN THE LOCAL AND SPECIALIST MDTS AND NEEDS TO ACCOMMODATE PATIENT CARE BEING PROVIDED AS LOCALLY AS POSSIBLE WHERE APPROPRIATE, FOR EXAMPLE FOR PALLIATIVE PROCEDURES. STANDARDS 10.1 UPPER GI CANCER PATIENTS SHOULD BE MANAGED BY A SPECIALIST UPPER GI MDT WITH CARE PROVIDED BY THE LOCAL & SPECIALIST MDT AS AGREED BY THE NETWORK THE LOCAL UPPER GI MDT AND SPECIALIST UPPER GI MDT SHOULD AGREE REFERRAL GUIDELINES IN-LINE WITH IOG GUIDANCE AND AS AGREED BY THE NETWORK. MONITORING 10.1 AUDIT OF CASES RECORDED BY THE SPECIALIST GASTRO-OESOPHAGEAL AND HEPATO- PANCREATICO-BILIARY MDTS. SUPPORTED BY CANISC NETWORK DOCUMENTATION OF REFERRAL GUIDELINES AND CARE PATHWAY BETWEEN THE LOCAL AND SPECIALIST UPPER GI MDT 7 Improving Outcomes in Upper GI Cancers, Department of Health, 2002 Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 24 of 33

25 10.3 MAJOR CURATIVE RESECTIONAL SURGERY SHOULD BE CARRIED OUT BY A SPECIALIST GASTRO OESOPHAGEAL, PANCREATIC OR HEPATOBILIARY MDT. SURGICAL PROCEDURES SHOULD BE CARRIED OUT IN APPROPRIATE CENTRES AND INCLUDE, A. PARTIAL AND TOTAL GASTRECTOMY INCLUDING, IN SELECTED CASES, EXTENDED LYMPHADENECTOMY B. SUBTOTAL OESOPHAGECTOMY C. LARYNGO/PHARYNGO OESOPHAGECTOMY IN ASSOCIATION WITH SPECIALIST WITH SPECIALIST ENT SURGEONS. D. PANCREATECTOMY E. LIVER RESECTION 10.3 ACTIVITY DATA OF OPERATIONS UNDERTAKEN SUPPORTED BY CANISC 10.4 HOSPITALS PROVIDING UPPER GI CANCER SURGICAL SERVICES MUST PROVIDE EMERGENCY ACCESS FACILITIES FOR PATIENTS WITH POST-OPERATIVE COMPLICATIONS TO ENSURE CONTINUITY OF CARE SURGEONS SHOULD BE BACKED UP BY DEDICATED ANAESTHETIC & THEATRE STAFF, SPECIALIST NURSES, APPROPRIATE INTENSIVE CARE & HIGH DEPENDENCY FACILITIES & EMERGENCY RADIOLOGICAL SUPPORT BY COLLEAGUES WITH EXPERIENCE TO PROVIDE COVER DURING ABSENCE OR ILLNESS 10.6 ANAESTHETISTS SHOULD BE EXPERIENCED IN THORACIC EPIDURAL & ONE-LUNG VENTILATION TECHNIQUES AND ANAESTHESIA FOR LIVER RESECTION 10.7 Patients should be given the opportunity to enter approved clinical trials for which they fulfil the entry criteria 10.4 DETAIL OF EMERGENCY ACCESS FOR PATIENTS WITH POST-OPERATIVE COMPLICATIONS 10.5 DETAIL SUPPORT STAFF AND ACCESS TO ITU/HDU 10.6 DETAIL REQUIRED SPECIALISATION 10.7 Documentation of all open trials and numbers of patients entered per trial per year. Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 25 of 33

26 OBJECTIVE 11 : TO ENSURE PATIENTS RECEIVE RADIOTHERAPY WHICH IS PLANNED, PRESCRIBED, DELIVERED, AND SUPERVISED IN A SAFE AND EFFECTIVE MANNER. Rationale: As with all other forms of treatment, the results of radiotherapy are likely to be optimum when it is delivered according to a formal written policy specifying dose, fractionation, overall treatment time, planning technique and means of verification plus other appropriate QA measures. This is especially true of radical (curative) therapy, where a uniform approach is necessary to be able to evaluate outcomes. It is also important that policies are in line with those in use elsewhere in the UK and worldwide. Where there is substantial deviation, this should be in the context of a formal clinical trial. Palliative treatments will need to be individualised on a more frequent basis, but the overall approach should conform as closely as possible to a written policy. There are circumstances where evidence exists for the superiority of one form of technology over another. An example is of the use of conformal radiotherapy in some pelvic malignancies, as a means of reducing treatment-related side effects. Networks need to have a strategy to ensure that patients for whom such technology is optimum are able to access it, even if this means crossing trust or network boundaries. The general quality of procedures in the radiotherapy department will be reflected in externally modulated quality schemes as originally specified by QART. STANDARD Patients undergoing radical radiotherapy as their primary curative therapy should be treated within 1 month as recommended by the JCCO as the maximum accepted delay Patients receiving radiotherapy should be treated according to an agreed, documented policy or in a formal clinical trial Equipment capable of delivering conformal radiotherapy should be available to each network. MONITORING Clinical audit of time from the date of the decision to treat by the oncologist supported by CaNISC a) Radiotherapy centres to have written clinical policies available. b) Clinical audit of compliance to policies to be undertaken supported by CaNISC c) Deviations from the policy to be documented a) Detail type and location of planning equipment. b) Detail type and location of multi-leaf collimator-equipped LINAC. c) Detail availability of treatment verification facilities. d) Accreditation certification Source: CSCG Title: UPPER GI CANCERS STANDARDS Version: 10/CONSULTATION Page 26 of 33