NEURO-ONCOLOGY DISEASE SITE GROUP CONSTITUTION

Transcription

1 NEURO-ONCOLOGY DISEASE SITE GROUP CONSTITUTION INCLUDING NETWORK CONFIGURATION AND OPERATIONAL FRAMEWORK Agreed by: Arden Trust Lead Clinicians for Brain/CNS and Arden Cancer Network Executive Group members (with delegated authority by the Network Board and the Network Chair as agreed at the Board Meeting on 14 th December 2009) with inclusion of approval of PCT Leads, Trust Lead Cancer Clinicians and Locality Group Chairs. Date: 24 April 2012 Agreed by: Karen Helliwell, Director, West Midlands Specialised Commissioning Group Date: 7 th January 2009 Version: 2012v1.0F Review Date: June

2 Contents Section 1: Introduction and background Page 3 Section 2: Network Configuration Page 3 Section 3: Configuration of the Arden Neuro- Oncology Services Pages 4-6 Section 4: Patient pathways Page 6-7 Section 5: Communication Framework Page 7 Section 6:Emergency Surgical Intervention Protocol Page 7 Section 7: Electronic transfer of images Page 7 Section 8: Governance of the local MDT Page 7 Appendices Pages 8-21 Page Reference Number for Peer Review Measures Measure number: Network Board Page Compliance 11-1A-201k 4 Y 11-1A-202k 3 Y 11-1A-203k 4 Y 11-1A-204k N/A N/A 11-1A-205k 5 Y 11-1A-206k 5 N Measure number: Locality Network Board 11-1D-101k 5 Y 11-1D-102k 6 Y 11-1D-103k 5 Y 11-1D-104k 6 N 11-1D-105k 6 N 11-1D-106k 6 N 11-1D-107k 6 N 11-1D-108k 7 N 11-1D-109k 7 N 11-1D-110k 7 Y 11-1D-111k 5 N 2

3 Section 1 Introduction and Background Improving Outcomes: A Strategy for Cancer (DoH, 2011) set out a range of actions to be taken to improve cancer outcomes. These include earlier diagnosis, promotion of healthier living to reduce the risk of preventable cancers, improved rates of screening and the introduction of new screening programmes, and ensuring universal access to the best treatments, care and support. It is hoped that the Strategy will help improve cancer survival, with an extra 5,000 lives saved each year by 2014/2015. The function of the Network is to implement the National Cancer Plan, Cancer Reform Strategy and Improving Outcomes: A Strategy for Cancer in a locally meaningful manner, delivering high quality cancer care across traditional geographical and organisational boundaries, and thereby ensuring access, equitable service provision and an improved patient experience. The purpose of this document is to provide the Arden Cancer Network Board and Stakeholder Organisations (Service Users and their families or carers, GP Consortia, Acute Trusts, Community Health Trusts, Primary Care Clusters, Voluntary Sector Organisations and Clinicians) with an overview of how Neuro-Oncology services are structured in order to provide Improving Outcomes Guidance (IOG) compliant services, which are responsive to user identified issues and recommendations (please see Appendix 1 and 2 for IOG Implementation Summary). As from 1 st April 2012, the Arden Cancer Network Director is also the interim Network Director for the Three Counties Cancer Network promoting closer working relationships between the two organisations during transition. This document is an organic living document that is only correct at the time of publication. An annual review will ensure that relevant national and local updates are reflected in order to support changes in practice. A Supra Regional Network Site Specific Group for Brain and CNS was established in The existence of this group predates publication of the peer review measures. This group is hosted by Pan Birmingham Cancer Network and reports to the West Midlands Specialised Services Commissioning Group via the West Midlands Rare Cancers Group. This group was originally chaired by the Director of Specialised Services Commissioning. However, in line with Peer Review Requirements the Supra Regional group has now been renamed as the West Midlands Neuro-Oncology Disease Site Group (NDSG) and formally reports to the Pan Birmingham Network Board. The West Midlands NDSG is regarded as the group to whom Arden, Greater Midlands, 3 Counties and Pan Birmingham Cancer Networks have delegated corporate responsibility for coordination and consistency across networks on cancer policy, patient pathways, practice guidelines, audit, research and service improvement as this relates to brain and CNS pathways. The Arden Cancer Network Board and the West Midlands Specialised Commissioning Group agree that there will be a single neuro-oncology disease site group (NDSG) and that the Pan Birmingham Cancer Network will host the West Midlands Supra Network Neuro Oncology Group (NDSG) which covers the following tumour types: 3

4 Brain and other rare CNS tumours (rare being defined as, Primary Central Nervous System Lymphoma (PCNSL), Primitive Neuroectodermal Tumours (PNETs), pineal tumours, optic pathway glioma, tumours associated with genetic predispositions) Pituitary tumours Skull base tumours Spinal cord tumours This group will produce the Constitution, Three Year Service Development Plan incorporating the Annual Work Plan and Annual Report in support of clinically safe and effective, evidence based, IOG compliant services. Representatives from the Arden Cancer Network, including clinicians and managers, attend and contribute to support the regional group. Decisions/Advice from the Supra-Network group: Arden representatives on the Supra Network group will liaise directly with UHCW Cancer Services Manager and the Network Director regarding any concerns or governance issues associated with the functioning of that group or decision-making, and this will be escalated through the Network Executive and/or the Pan Birmingham Network (host of group) as appropriate. Arden Cancer Network membership of the West Midlands Supra Network Neuro Oncology Group (NDSG) includes: Professor Ian Brown, Consultant Clinical Oncologist Mr Munchi Choksey, Consultant Neurosurgeon Mr Ian Edwards, Clinical Nurse Specialist Mrs Audrey Hopwood, Clinical Nurse Specialist Mr Shabin Joshi, Consultant Neurosurgeon Mrs Helen West, Cancer Services Manager Mrs Danielle Taylor, Network Director Mr Ray Churchett, User Partnership Group representative Full details of membership, terms of reference and attendance can be found in the Pan Birmingham Cancer Network documentation. Section 2 - Network Configuration The Network Board has agreed with the West Midlands Specialised Commissioning Group that the Arden Cancer Network hosts a neuroscience centre at University Hospitals Coventry and Warwickshire NHS Trust. Section 3 Configuration of the Arden Cancer Network Neuro-Oncology Services The Arden Neuro-Oncology service provides all key services related to brain and CNS cancer for the following tumour groups: Primary brain tumours Metastatic brain and spinal tumours 4

5 Pituitary tumours Skull base tumours Spinal cord tumours Lymphomas Primitive Neuroectodermal Tumours (PNETs) Tumours associated with genetic predispositions. In addition there is good local access to: specialised surgery, PET CT and chemo-radiation. The Arden neuro-oncology Multidisciplinary Team is a multi-professional group of health professionals who provide a full range of diagnostic, treatment and care services for all pre - and post - operative patients with brain and other central nervous system (CNS) tumours in Coventry, Warwickshire, Worcestershire, South Leicestershire, South Birmingham, South Staffordshire and South Staffordshire. 3.1 Designated Multi Disciplinary teams All patients with suspected or newly diagnosed Neuro-Oncology cancer within the Arden Cancer Network will be promptly referred to and managed by the designated Neuro- Science MDT (NSMDT) and Cancer Network MDT at UHCW NHS Trust; this is a multiprofessional group of health professionals who provide a full range of diagnostic, treatment and care services for all pre - and post - operative patients with brain and other central nervous system (CNS) tumours in Coventry, Warwickshire, Worcestershire, South Leicestershire, South Birmingham, South Staffordshire and covers a population of approximately 1.4 million people. 3.2 Location of Multidisciplinary Specialist Clinics The Arden Cancer Network Board agrees the following location of the multidisciplinary specialist clinics for the CNS tumours subspecialties dealt with by that NSMDT: Specialist clinics held at UHCW NHS Trust for the Arden population are as follows: Spine and CNS: joint weekly clinic: UONC22AO Follow up clinics UEDW1PM, UEDWI3AO, UEDWI4PO Skull base: monthly clinic: USHASB4PN, USHASB4PO Pituitary: monthly clinics: 1 st Monday of the month URANSAXH1PN, URANSAXH1PO, 2 nd Monday of the month URANSHAA42PN, RANSHAA42PO The specialist clinics are supported by: Subspecialty Staff Surgeon Oncologist (RT/CT) Specialist Nurse Endocrinologist (for pituitary tumours) Endocrinology CNS Named member Mr. Munchi Choksey Prof Ian Brown Mr. Ian Edwards/ Ms Audrey Hopwood Dr. Randeva Megan Smith 5

6 3.3 Operational Policy for Neuro-rehabilitation Facilities The Arden Cancer Network Board will agree with the Trust cancer leads in the Network the operational policy for in-patient and community neuro-rehabilitation facilities either hosted by the Trusts or to which the Trust refers patients to. The WMNDSG have developed the referral pathways and these are awaiting ratification at a future regional meeting. Once agreed these will be adopted and written into the local operational policy at UHCW. 3.4 Trust Lead Clinicians for Brain and CNS tumours The named lead clinicians for brain and CNS tumours with the Arden Cancer Network are Hospital site Trust Lead for Brain/ CNS Agreed by UHCW NHS Trust Mr Munchi Choksey Dr Clive Irwin SWF NHS Trust Dr Peter Hawker Mr Martin Lee GEH NHS Trust Dr Ram Nangalia Mr Martin Lee AHR (WAHTrust) Dr B Wittkop Mr. Martin Lee 3.5 MDT Membership of CNS Specialist Nurses Within UHCW NHS Trust there are 2 Macmillan Neuro-oncology Clinical Nurse Specialists both of whom are core members of that trust s designated Neuro-Science MDT and Cancer Network MDT and both are graduates in Specialist Practice Oncology, have carried out courses in Advanced Communication Skills and the Screening for and Managing Distress and the administration of chemotherapy. One of the clinical nurse specialists has a Diploma in Psychiatric Studies, Diploma in Effective Pain Management and a Diploma in Neurological and Neurosurgical Nursing. Certificates are located in the UHCW evidence folder and have been validated by the lead cancer nurse of that Trust. Section 4: Patient Pathways The Trust Lead Clinicians for Brain and CNS within the Arden Cancer Network are committed to agreeing the following pathways with the West Midlands Supra Network Neuro-Oncology Group: Presentation pathway Diagnostic pathway Treatment pathway Follow up pathway No pathway guidelines have been agreed by the Supra Network Group to date but are within the work programme for that group. At the Arden Annual Network/Trust Neurooncology Operational Policy meeting held on 14 th October 2011 the following local pathways in the diagnosis, treatment and follow up of patients diagnosed with brain and other CNS tumours were agreed (appendices 2-10): Appendix 3: Diagnosis, Treatment and Follow up Pathway for Neuro-oncology Patients Admitted to UHCW, South Warwickshire, George Eliot, Redditch and Worcester Appendix 4: Diagnosis, Treatment and Follow up Pathways for Patients referred by GPs 6

7 Appendix 5: Guidelines for the Treatment and Follow up of Patients with Metastatic Tumours Known Primary Appendix 6: Guidelines for the Diagnosis, Treatment and Follow up of Metastatic Tumours Unknown Primary Appendix 7: Diagnostic, Treatment and Follow up Pathways for Patients who require Emergency Neurosurgery Appendix 8: Diagnosis, Treatment and Follow up Pathway Guidelines for Pituitary Tumours and Benign Skull Base Tumours Appendix 9: Neuro-Psychological Pathways for Neuro-oncology Patients Appendix 10: Diagnosis, Treatment and Follow-up of Spinal Tumours Appendix 11: Diagnosis, Treatment and Follow-up Patients Diagnosed with Brain and other CNS Lymphomas Treatment and Follow up of Young People Treatment and follow up for patients between the ages of 19 and 24 will either be delivered at the Principle Treatment Centre (PTC) or locally according to patient s wishes. All 16 (or under) to 24 year old patients will be referred to the PTC psychosocial MDT (see pathway on following page). Section 5: Communication Framework The Trust Lead Clinicians for Brain and CNS within the Arden Cancer Network are committed to agreeing the Area Wide Communication Framework produced by the West Midlands Supra Network Neuro-Oncology Group and will add in their local named imaging services and multidisciplinary clinics. This framework is yet to be developed but is within the work programme for the West Midlands group. Section 6: Emergency Surgical Intervention Protocol The Trust Lead Clinicians for Brain and CNS within the Arden Cancer Network are committed to agreeing the Emergency Surgical Intervention Protocol to be produced by the West Midlands Supra Network Neuro-Oncology Group and will add in locally relevant content and distribute to A&E departments, surgeons on the acute surgical take rota and neurosurgeons. Development of this protocol is within the work programme for the West Midlands group and the local practice policy can be found at Appendix 7 of this document: Diagnostic, Treatment and Follow up Pathways for Patients who require Emergency Neurosurgery. Section 7: Electronic transfer of images UHCW NHS Trust electronically transfers images of CT and MRI scans used in the investigation of patients with a potential brain and CNS tumour, from its imaging department to the radiology core members of its NSMDT. Section 8: Governance of the local MDT 7

8 Governance of the local MDT will be such that cancer waiting times reports and peer review reports will be independently reviewed by the Network Executive group on a quarterly and annual basis. Any remedial action or governance concerns will be fed back to the Trust, reported to the Network Executive and escalated to the Network Board as necessary. 8

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10 Appendix 1 Cancer Action Team Department of Palliative Medicine St Thomas Hospital London SE1 7EH 7 January 2009 Dear Ruth Implementation Summary: NICE Improving Outcomes Guidance in Brain and CNS tumours I attach part 2 of the submission for the above. It describes how this IOG will be implemented in West Midlands and covers three neurosciences MDTs (University Hospital Birmingham; University Hospital North Staffs; University Hospital Coventry and Warwick) and one cancer network MDT (Cheltenham). Section 2 of the narrative identifies the key implementation issues which relate to separation of the surgical and non surgical elements of the MDTs and the creation of rehabilitation pathways. For completeness I have attached part 1 of the implementation summary which relates to patient flow data. In section 5 (point 16, 3 rd bullet)) of the attachment to your letter (28 March 2008) you ask for confirmation that the contents of part 1 still apply. There have been changes to this in that Three Counties Cancer Network has advised us that some patients from Worcestershire PCT are referred to University Hospital Birmingham. More information is given in the narrative. Since sending you part 1 we have identified the local cost pressures of implementing this IOG and at the time of writing I can only confirm that the Birmingham element of these has been included in LCCB plans. We will take forward the recommendations of the IOG through the supra-network neuro-oncology group chaired by Professor Garth Cruickshank. The attached action plan will form the future work programme of the group. I hope this is clear, please get back to me if you would like to discuss this further. Yours sincerely Karen Helliwell Director, West Midlands Specialised Commissioning Group. 10

11 Appendix 2 WEST MIDLANDS SPECIALISED COMMISSIONING GROUP PAN BIRMINGHAM, GREATER MIDLANDS, ARDEN, THREE COUNTIES CANCER NETWORKS IMPROVING OUTCOMES GUIDANCE BRAIN & CNS TUMOURS IMPLEMENTATION SUMMARY PART 1 (MAP OF BRAIN & CNS CANCER NETWORKS) Host Trust for Neurosciences Centre s Brain&CNS MDT & hospital site for surgery UNIVERSITY HOSPITAL, BIRMINGHAM State if Neurosciences Centre s Brain&CNS MDT is a combined MDT for any or all of the following: o pituitary tumours o spinal cord tumours o skull based tumours o rare CNS tumours Skull based Rare CNS tumours Lead SCG for the Neurosciences Centre s Brain&CNS MDTs West Midlands SCG Host Trust/s for the Cancer Network Brain&CNS MDT/s linked to this Neurosciences Centre s Brain&CNS MDT tbc Referring PCTs Cancer Network of referring PCTs Pan Birmingham Cancer Network Population of referring PCTs (000s) Birmingham 373 East&North South Birmingham 367 HoBt 252 Sandwell

12 Solihull 200 Walsall 253 South Staffs 30% 178 Cancer Network sub total 1.909m Greater Midlands Cancer Network Telford&Wrekin 80 50% Shropshire 50% 144 Wolverhampton 239 City Dudley 304 Cancer Network sub -total 767 Three Counties Cancer Network Herefordshire 178,000 Total population served by UHBFT MDT Date when core and extended MDT in place 2.854m At 1 May fully established UNIVERSITY HOSPITAL, NORTH STAFFS Combined for pituitary, spinal cord & rare CNS West Midlands SCG University Hospital North Staffs (Stoke) Greater Midlands Cancer Network Stoke on Trent

13 South Staffs 70% 416 North Staffs 210 Shropshire 50% 144 Telford&Wrekin 80 50% Cancer Network sub - total 1.095m Welsh Local Health Board Powys 60 Sub total 60 Central and Eastern Cheshire Merseyside and Cheshire Cancer Network 260 Cancer Network sub- total 260 Total population served by UHNS MDT Date when core and extended MDT in place 1.415m Dec 2009 UNIVERSITY HOSPITAL, COVENTRY&WARWICK Combined for all of the above West Midlands SCG University Hospital, Coventry & Warwickshire Arden Cancer Network Warwickshire 535 Coventry 313 Worcestershire 556 Cancer Network sub- total 1.404m 13

14 Total population served by UHCW MDT Date when core and extended MDT in place Total population served by the three neurosciences centres in the West Midlands 1.404m At 1 May fully established except for pathologist. All pathology sent to Birmingham 5.650m (including 320,000 from outside the West Midlands (Merseyside and Cheshire Cancer Network (260,000) and Welsh Local Health Board (60,000) leaving a West Midlands total of 5.330m) 14

15 Appendix 3: Diagnosis, Treatment and Follow up Pathway for Neuro-oncology Patients Admitted to UHCW, South Warwickshire, George Eliot, Redditch and Worcester UHCW On-call Neurosurgical Registrar (bleep 2300). Referral for MDT opinion to be faxed to MDT co-ordinator (appendix 6) Satellite Hospital On - call Neurosurgical Registrar to be contacted by patient s team. Scans to be sent to UHCW via link-up. Referral for Neuro-oncology MDT opinion to be faxed to MDT coordinator. Surgery Discuss at Neuro-oncology MDM- Decision made to admit patient for surgery No Intervention UHCW - CNS to inform patient s medical team Satellite Hospital - MDT co-ordinator (UHCW) to fax decision to MDT co-ordinator. CNS will contact patient s team if required UHCW Patient placed on emergency list for admission to Neurosurgical Ward Satellite Hospital Patient placed on emergency transfer list to neurosurgical ward MDT co-ordinator at UHCW to fax decision to MDT co-ordinator at satellite hospital (appendix 7) Patient admitted transferred to Neurosurgical Ward Surgery: Biopsy, Debulking or Excision. Await Histology Discuss case at Neuro-oncology MDM Follow up by Neurosurgeons if tumour benign or Refer to Consultant Neuro oncologist if tumour cancerous or if supportive treatment e.g. symptom control with appropriate titration of dexamethasone Patient referred back to satellite hospital, discharged home or referred to oncology ward at UHCW. Refer to appropriate agencies e.g. District Nursing Team, Palliative Care, Macmillan team, Rehabilitation 4 to 6 weekly follow up outpatients appointments for patients on adjuvant chemotherapy. Follow up scans to be ordered by Neuro- oncologist as required Neurosurgical OPA 6 to 8 weeks post op and thereafter as required 15

16 Appendix 4: Diagnosis, Treatment and Follow up Pathways for Patients referred by GPs GP Referral Urgent referral faxed Routine referral by fax Consultation within 2 weeks of receipt of referral Consultation with specialist, e.g. Neurologist Tests ordered as necessary, e.g. MRI/CT/tumour markers Tests ordered as necessary, e.g. MRI/CT/tumour markers Discuss case at Neurooncology MDM Discuss case at Neurooncology MDM Patient put on Emergency waiting list Patient placed on elective list Patient admitted and consented Patient admitted electively Biopsy, debulking or excision of tumour Patient consented for surgery Await histology Biopsy, debulking or excision of tumour Discuss case at Neurooncology MDM Await histology Refer if required to Neurooncologist Refer if required to Neurooncologist 16

17 Appendix 5: Guidelines for the Treatment and Follow up of Patients with Metastatic Tumours Known Primary Referral to MDM by oncologist treating primary tumour Review up to date scans, tumour markers etc Patients with1 lesion refer if possible to neurosurgeon for biopsy/debulking Patients with 2 or more lesions generally refer back to oncologist treating primary Single lesion Debulk if possible Multiple lesions Whole brain radiotherapy Whole brain radiotherapy if possible/ supportive treatment Refer back to the oncologist dealing with primary tumour 17

18 Appendix 6: Guidelines for the Diagnosis, Treatment and Follow up of Metastatic Tumours Unknown Primary GP emergency referral or self referral to A&E Urgent CT/MRI brain/ CT chest, abdomen and pelvis. Relevant tumour markers One lesion, then refer for Neurosurgical opinion Discuss case at Neurooncology MDM Two lesions or more, refer to Neuro-oncologist for consideration of RT Discuss case at Neurooncology MDM Identification of primary Note Identification not always possible (Approx 15% of cases) Refer to Palliative Care Consultant and Palliative Care Team RT not appropriate 18

19 Appendix 7: Diagnostic, Treatment and Follow up Pathways for Patients who require Emergency Neurosurgery Patient s neurosurgeon to discuss case with at least one other consultant from core MDM Decision made that surgery appropriate Patient consented 2 doctor consent if required. Ensure any NOK informed Await histology Discuss case at next Neuro-oncology MDM Refer to Neuro-oncology if required or supportive treatment e.g. steroid management 19

20 Appendix 8: Diagnosis, Treatment and Follow up Pathway Guidelines for Pituitary Tumours and Benign Skull Base Tumours Consultant/GP to Consultant referral Out-patient appointment with Consultant Neurosurgeon Discussion at Neuro-oncology/ skull base/pituitary MDM Arrangements made for admission to neurosurgical ward Patient consented for surgery Biopsy/debulking/excision of tumour. Await histology Benign Discuss case at Neuro-oncology MDM Post op MRI scan arranged. Out-patient appointment with metabolic team Referral to Neurooncologist if required e.g. after repeat scanning and/or further surgery Neurosurgical OPA approx 6/52 post op Radiotherapy if required On-going endocrinological monitoring as required 20

21 Appendix 9: Neuro-Psychological Pathways for Neuro-oncology Patients Consultant Neuro-oncologist or Neuro-oncology CNS to fax referral form to Neuro-psychology team at UHCW Coventry Patients Referral to Dr Ruth Telfer Consultant Neuro-pyschologist at UHCW. Referrals for non-coventry Patients Consultant Referral for patients outside Coventry to be faxed by Neuro-psychology secretary at UHCW to one of the following Neuro-psychologists North Warwickshire Dr Louise Price South Warwickshire Dr James Parker Worcester Dr Dene Fokias Tamworth Dr Chris Plowman Leicester Dr Declan McNicholl 21

22 Appendix 10: Diagnosis, Treatment and Follow-up of Spinal Tumours Discuss case at Neuro-oncology MDM In suspected emergencies contact neuro-surgical Reg on 2300 Any further imaging with MRI that may be required. Angiography may be required in few patients Intradural lesions Surgery to prevent further neurological deterioration Intramedullary glial lesions Surgery possible but risk of further damage to cord. Diagnosis Discuss case at Neurooncology MDM Refer to Neurooncologist if appropriate for further management If radiotherapy not required follow up by surgeons Refer if appropriate to Rehab Refer to palliative care if appropriate e.g. high grade glial tumour 22

23 Appendix 11: Diagnosis, Treatment and Follow-up Patients Diagnosed with Brain and other CNS Lymphomas All patients with suspected lymphoma discussed at Neuro-oncology MDM Ensure patient on high dose dexamethasone 4mg qds? re-scan after 2/52 Biopsy/debulking of tumour If chemoradiotherapy inappropriate supportive management e.g. titrate steroids according to need and any other symptom control required Diagnosis of lymphoma Discuss case at Neurooncology MDM Refer to Haemato-oncologist and/or Clinical-oncologist for further management radiotherapy and/or chemotherapy dependent on patient s performance status 23