National Peer Review Report: Brain and CNS Cancer Services Report 2012/2013

National Peer Review Programme National Peer Review Report: Brain and CNS Cancer Services Report 2012/2013 www.nationalpeerreview.nhs.uk

Brain and CNS Cancer Network (Non-Surgical) MDTs) Overall Performance Of the 21 reviewed against the 26 measures 1 team was on the IV cycle and 20 were on the Peer Review cycle. 100% Overall Compliance Ranges Brain and CNS MDTs (11/12 and 12/13) 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% x2 Brain and CNS MDT 11 12 Brain and CNS MDT 12 13 Red vertical lines: complete range Blue box: inter-quartile range Orange horizontal line: median value Team below 50% (If more than one team, number in brackets) 7 were selected for a cancer peer review visit in 2013/2014. 7 networks do not have a service. The table below shows the outcomes against the measures for 21 reviewed in 2012/2013; Teams Compliance IV PR 100% 0 0 90-99% 0 0 80-89% 0 1 70-79% 0 5 60-69% 0 7 50-59% 1 2 40-49% 0 1 0-39% 0 4 Median 62% Range 0-88% Interquartile Range 54-73% 2

Immediate Risks and Serious Concerns with IRs (SA) with IRs (IV) with IRs (PR) Total no of IRs Percentage of with IRs with SCs (SA) with SCs (IV) with SCs (PR) Total no of SCs Percentage of services with SCs 0 0 0 0 0% 1 0 12 13 62% The main focus of these were: Lack of long term funding for CNS posts and cover for CNS. Core members of the MDT such as oncology and radiology not attending the MDT due to being stretched across multiple MDTs and study/sick/annual leave, with no cover arrangements in place. Also lack of cover for MDT coordinator which has resulted in MDT meetings being cancelled and ad-hoc discussions taking place which are not truly multidisciplinary. Gaps in the extended team membership of the CNMDT, struggling to promote the value of the CNMDT to the wider neuroscience community. One member of a surgical team has performed more than 25 brain tumour operations but has not been attending the Neuroscience MDT, therefore patients management decisions are bring made outside of the MDT. Lack of robust arrangements to access timely decisions regarding neurological surgical intervention for patients presenting with MSCC is raised as a serious concern. Lack of robust and timely communication from Neuroscience MDT. This results in potential delays in treatment. Lack of attendance at the Cancer Network MDT by the lead clinician for the combined Neuroscience and CNMDT, this means that there is a lack of formal leadership for this aspect of the MDT s work. Other immediate risks and serious concerns related to: The timing of the MDT not being practical and does not allow patients to be fully discussed. Not all patients are being referred to the CNMDT, patients are therefore not benefiting from the knowledge, skills and expertise of the CNMDT. Lack of AHP involvement in MDT, which results in delays to patients who require access to rehabilitation services. Not all pituitary patients are benefiting from a full multi-disciplinary discussion by the Specialist Pituitary MDT, this is not compliant with the IOG. Good Practice There are many examples of good practice, these particularly focused on: Radiotherapy techniques have been developed to ensure all patients receiving radical radiotherapy are planned using conformal techniques with image fusion using MRIs. Use of treatment techniques including: awake craniotomies; motor cortical mapping and good recruitment into clinical trials. Chemo-radiation toxicity and outcome audit demonstrating an overall survival rate comparable to published trials with low toxicity from treatment. Dedicated palliative care support aligned to the brain service. Building and opening of the first dedicated inpatient unit for patients with brain tumours. Establishment of a Vocational Rehabilitation Service for patients with brain tumours. Expanding the remit of the Brain Tumour Unit office by offering patients direct telephone access to a CNS for triaging of symptoms, advice on medications and signposting to community services. 3

Measures with below 50% compliance: Measure Number and Short Title PR (21 ) 11-2K-101 - Lead Clinician and Core Team Membership 20% 11-2K-102 - Extended Team Membership 30% 11-2K-105 - Cover Arrangements for Core Members 10% 11-2K-106 - Core Members Attendance 0% 11-2K-112 - Attendance at the National Advanced Communications Skills Training 20% 11-2K-125 - Agreed Participation in Area Audit 40% Neuroscience MDTs Overall Performance Of the 54 Neuroscience MDTs reviewed against the 41 measures 3 were on the SA cycle and 51 were on the PR cycle. 100% Overall Compliance Ranges Neuroscience MDTs (11/12 and 12/13) 90% 80% 70% 60% 50% 40% 30% x2 x2 x3 20% 10% 0% x4 Neuroscience 11 12 Neuroscience 12 13 Red vertical lines: complete range Blue box: inter-quartile range Orange horizontal line: median value Team below 50% (If more than one team, number in brackets) 4

Teams Compliance SA PR 100% 0 0 90-99% 1 2 80-89% 1 7 70-79% 0 7 60-69% 1 13 50-59% 0 13 40-49% 0 6 0-39% 0 3 Median 60% Range 20-94% Interquartile Range 52-73% Immediate Risks and Serious Concerns with IRs (SA) with IRs (IV) with IRs (PR) Total no of IRs Percentage of with IRs with SCs (SA) with SCs (IV) with SCs (PR) Total no of SCs Percentage of services with SCs 0 0 6 6 11% 0 0 38 38 70% The main focus of these were: Core MDT members such as oncologists, radiologists and surgeons not attending the MDT and lack of appropriate cover. This could result in some patients not receiving a full multidisciplinary discussion which would have an effect on clinical outcomes. Unclear pathways between different neuroscience MDTs resulting in some patients being re-discussed with different outcomes or some not being discussed at all. Surgeons who are operating on Neuroscience patients are not core members of the Neuroscience MDT, this is not IOG compliant. It has been documented at one trust that not all surgeons on the Emergency Surgery on call rota are cranial neurosurgeons and as a consequence non cranial neurosurgeons may operate on brain cancer patients without a formal protocol as to how they might proceed. This could ultimately result in poor outcomes for patients. Dysfunctional MDT with a disproportionate focus on surgical and oncological interventions without sufficient emphasis on other elements of the patient s pathway. Lack of palliative care attendance at the MDT and access to AHP services. Demand for imaging often exceeds capacity and therefore surgery taking place without MRI. Workload for CNS when there is lack of cover, in order for the CNS to provide the appropriate level of support for patients, cover needs to be put in place. The satellite MDT is not part of the Network configuration which means that decisions are being made without the benefit of a full MDT discussion. Core members do not have DCC programmed activities for skull case work. 5

Lack of endocrinology attendance at MDT resulting in pituitary patients not having their cases discussed with the appropriate MDT members. Patients who require ocular plastic specialist knowledge are being discussed with the maxillofacial surgeons instead of being discussing cases with the specialist ocular plastic surgeon. MDT clinics are held for patients with acoustic neuroma, which does not appear in the Network configuration and is not compliant with the allowable configuration under the cancer measures. Lack of clear out of hours endocrinology cover for pituitary emergencies. Lack of ITU beds for surgical patients. Good Practice There are many examples of good practice, these particularly focused on: Use of treatment techniques including awake craniotomies, motor cortical mapping and good recruitment into clinical trials. Patients have access to state of the art radiotherapy techniques including intensity modulated radiotherapy, image guided radiotherapy and stereotactic radiotherapy. Development of fluoresceine-guided resection service for high grade gliomas. The regional roadshow is a rolling programme of educational evenings in which team members including neurosurgical and neuro-oncology consultants along with the CNS travel to a host Trust, GP practice or hospice to deliver introductory lectures outlining the neuro-oncology service. The focus is on the patient experience and useful information for referring clinicians and support professionals. Introduction of a pre-operative assessment clinic that manages the patients and carers expectations in their care pathways and allows everyone in the team to meet the patient and start their care plan. This means that, particularly in relation to AHP support, the team can start to discuss patients needs with local services to ensure this is available in a timely way. This aids discharge and reduces length of stay as well as helping to avoid unnecessary/inappropriate admission to a neurosurgical bed. Development of a facial nerve multidisciplinary meeting which provides a coordinated approach to the care of this group of patients. Measures with below 50% compliance: Measure Number and Short Title 11-2K-03 - Lead Clinician and Core Team Membership for a NSMDT Dealing with Pituitary Tumours SA (3 ) 11-2K-15 - Cover Arrangements for Core Members 33% 11-2K-16 - Core Members Attendance 0% 11-2K-21 - Attendance at the National Advanced Communications Skills Training 33% 0% 6

Measure Number and Short Title 11-2K-01 - Lead Clinician and Core Team Membership for a NSMDT Dealing with Brain and Other Rare CNS Tumours 11-2K-02 - Lead Clinician and Core Team Membership for a NSMDT Dealing with Brain and Other Rare CNS Tumours which is being reviewed as a combined CN and NS MDT 11-2K-03 - Lead Clinician and Core Team Membership for a NSMDT Dealing with Pituitary Tumours 11-2K-04 - Lead Clinician and Core Team Membership for a NSMDT Dealing with Spinal Tumours 11-2K-05 - Lead Clinician and Core Team Membership for a NSMDT Dealing with Skull Base Tumours 11-2K-06 - Lead Clinician and Core Team Membership of NSMDTs Dealing with Combinations of Tumour Groups 11-2K-11 - Extended Team Membership for an NSMDT Dealing with Skull Base Tumours 11-2K-12 - Extended Team Membership of NSMDTs Dealing with Combinations of Tumours PR (51 ) 11-2K-15 - Cover Arrangements for Core Members 25% 11-2K-16 - Core Members Attendance 13% 11-2K-21 - Attendance at the National Advanced Communications Skills Training 11-2K-22 - Specialist Training for Core Nurse Members 41% 11-2K-28-50% Specified Surgical Programmed Activities 34% 11-2K-30 - Specialist Clinic Attendance by Core Oncologist MDT Members 41% 11-2K-39 - Agreed Participation in Area Audit 42% Brain and CNS localities Of the 153 services reviewed against the 11 measures 91 were on the selfassessment cycle, 38 were on the internal validation cycle and 24 were on the peer review cycle. The table below shows the outcomes against the measures for the 153 services reviewed in 2012/2013; Teams Compliance SA IV PR 100% 53 7 2 90-99% 7 6 4 80-89% 20 11 7 70-79% 2 2 5 60-69% 3 2 1 50-59% 1 0 1 40-49% 1 1 1 0-39% 4 9 3 Median 90% Range 0-100% Interquartile Range 82-100% 22% 13% 37% 25% 27% 19% 46% 27% 0% 7

BRAIN AND CNS NETWORK There are many examples of good practice at network level, these particularly focused on: Access to state of the art radiotherapy techniques including intensity modulated radiotherapy, image guided radiotherapy and stereotactic radiotherapy. A Pituitary trials portfolio has been created. Active patient feedback surveys with actions when highlighted by patients/carers. Web Based Referral System shared with over 600 GP Practices Education/ Training in collaboration with Hammer Out. Pilot project of communicating the MDT outcome to referring units through participating cancer services has facilitated the achievement of targets in the area wide communication framework. Increasing patient and public involvement work including agreement of revised patient satisfaction questionnaire to reflect the complex needs of this patient group. 8

Appendix 1 OVERALL PERCENTAGE COMPLIANCE AGAINST THE MDT PEER REVIEW MEASURES Network MDT Measure Number and Short Title SA (0 ) IV (0 ) PR (21 ) 11-2K-101 - Lead Clinician and Core Team Membership 20% 11-2K-102 - Extended Team Membership 30% 11-2K-103 - MDT Attendance at NDSG Meetings 65% 11-2K-104 - Patient Management Meeting 80% 11-2K-105 - Cover Arrangements for Core Members 10% 11-2K-106 - Core Members Attendance 0% 11-2K-107 - Specialist Nurse Attendance at NSMDT Meetings 11-2K-108 - Dual MDT Core Membership of CNMDT Oncologists 11-2K-109 - Operational Policy Meeting 75% 11-2K-110 - Indications for Patient Discussion by the CNMDT 11-2K-111 - Key Worker Policy 65% 11-2K-112 - Attendance at the National Advanced Communications Skills Training 11-2K-113 - Specialist Training for Core Nurse Member 55% 11-2K-114 - List of Responsibilities for Core Nurse Members 11-2K-115 - Patients' Permanent Consultation Record 55% 11-2K-116 - Patients' Experience Exercise 65% 11-2K-117 - Provision of Patient Written Information 80% 11-2K-118 - Patient Management Review 80% 11-2K-119 - Clinical Guidelines 85% 11-2K-120 - The Diagnostic Pathway 60% 11-2K-121 - The Treatment Pathway 55% 11-2K-122 - The Follow Up Pathway 70% 11-2K-123 - The Communication Framework 60% 11-2K-124 - Data Collection 55% 11-2K-125 - Agreed Participation in Area Audit 40% 11-2K-126 - Agreed List of Approved Trials 65% 60% 60% 70% 20% 80% 9

Neuroscience MDT Measure Number and Short Title 11-2K-01 - Lead Clinician and Core Team Membership for a NSMDT Dealing with Brain and Other Rare CNS Tumours 11-2K-02 - Lead Clinician and Core Team Membership for a NSMDT Dealing with Brain and Other Rare CNS Tumours which is being reviewed as a combined CN and NS MDT 11-2K-03 - Lead Clinician and Core Team Membership for a NSMDT Dealing with Pituitary Tumours 11-2K-04 - Lead Clinician and Core Team Membership for a NSMDT Dealing with Spinal Tumours 11-2K-05 - Lead Clinician and Core Team Membership for a NSMDT Dealing with Skull Base Tumours 11-2K-06 - Lead Clinician and Core Team Membership of NSMDTs Dealing with Combinations of Tumour Groups 11-2K-07 - Extended Team Membership for a NSMDT Dealing with Brain and Other Rare CNS Tumours 11-2K-08 - Extended Team Membership for an NSMDT Dealing with Brain and Other Rare CNS Tumours which is being reviewed as a Combined CN and NS MDT 11-2K-09 - Extended Team Membership for an NSMDT Dealing with Pituitary Tumours 11-2K-10 - Extended Team Membership for an NSMDT Dealing with Spinal Tumours 11-2K-11 - Extended Team Membership for an NSMDT Dealing with Skull Base Tumours 11-2K-12 - Extended Team Membership of NSMDTs Dealing with Combinations of Tumours SA (3 ) IV (0 ) IV (56 ) 22% 13% 0% 37% 100% 25% 27% 19% 50% 57% 50% 70% 100% 50% 11-2K-13 - MDT Attendance at NDSG Meetings 100% 82% 11-2K-14 - Patient Management Planning Meeting 100% 84% 11-2K-15 - Cover Arrangements for Core Members 33% 25% 11-2K-16 - Core Members Attendance 0% 13% 11-2K-17 - Operational Policy Meeting 100% 64% 11-2K-18 - Policy for Patients to be Discussed by the MDT 46% 27% 100% 84% 11-2K-19 - Informing the GP of the Diagnosis 100% 52% 11-2K-20 - Key Worker Policy 67% 51% 11-2K-21 - Attendance at the National Advanced Communications Skills Training 33% 0% 11-2K-22 - Specialist Training for Core Nurse Members 67% 41% 11-2K-23 - List of Responsibilities for Core Nurse Members 67% 62% 10

11-2K-24 - Patients' Permanent Consultation Record 100% 85% 11-2K-25 - Patients' Experience Exercise 67% 50% 11-2K-26 - Provision of Patient Written Information 100% 76% 11-2K-27 - Patient Management Planning Decision 100% 88% 11-2K-28-50% Specified Surgical Programmed Activities (Applicable to NSMDTs dealing with brain and other rare CNS tumours and/ or spinal tumours) 11-2K-29 - Specified Surgical Programmed Activities (Applicable to NSMDTs dealing with pituitary tumours and NSMDTs dealing with skull base tumours) 11-2K-30 - Specialist Clinic Attendance by Core Oncologist MDT Members 11-2K-31 - Specialist Clinic Attendance by Core Nurse MDT Members 11-2K-32-50% Specified Radiological Programmed Activities 100% 34% 100% 54% 67% 41% 67% 61% 100% 77% 11-2K-33 - Clinical Guidelines 100% 66% 11-2K-34 - The Diagnostic Pathway 100% 67% 11-2K-35 - The Treatment Pathway 100% 73% 11-2K-36 - The Follow Up Pathway 100% 77% 11-2K-37 - Area Wide Communication Framework 100% 60% 11-2K-38 - Data Collection 100% 70% 11-2K-39 - Agreed Participation in Area Audit 67% 42% 11-2K-40 - Agreed List of Approved Trials 100% 55% 11-2K-41 - Joint Treatment Planning for TYAs 100% 75% 11

Appendix 2 BRAIN AND CNS TEAMS: IMMEDIATE RISKS, SERIOUS CONCERNS AND OVERALL COMPLIANCE Network MDTs Team Network % Stage IR SC MDT - RMH Sutton SWLCN - South West London 88 PR SC MDT - North Bristol ASWCN - Avon, Somerset & Wiltshire 77 PR MDT - Royal Berkshire TVCN - Thames Valley 77 PR MDT - RSCH SWSHCN - Surrey, West Sussex & Hampshire 77 PR SC* MDT - Mount Vernon Cancer Centre MVCN - Mount Vernon 73 PR SC MDT - Newcastle NECN - North of England 73 PR MDT - Christie Hospital MDT - Hull And East Yorkshire Hospitals GMCCN - Greater Manchester & Cheshire NEYHCA - North East Yorkshire and Humber Clinical Alliance 69 PR 65 PR SC MDT - Leeds Teaching YCN - Yorkshire 65 PR SC MDT - BSUH SCN - Sussex 62 PR SC* MDT - Charing Cross NWLCN - North West London 62 PR MDT - Sheffield NTCN - North Trent 62 PR MDT - Southend ECN - Essex 62 PR MDT - Lincoln County Hospital EMCN - East Midlands 54 SA SC MDT - Poole DCN - Dorset 54 PR SC MDT - Walton MCCN - Merseyside & Cheshire 54 PR SC* MDT - Gloucestershire Hospitals NHS Foundation Trust 3CCN - 3 Counties 42 PR SC MDT - Addenbrookes AngCN - Anglia 27 PR SC MDT - Maidstone Hospital KMCN - Kent & Medway 19 PR SC MDT - National Hospital for Neurology and Neurosurgery NCLWECCN - North Central London and West Essex CCN 15 PR SC MDT - University Hospitals Southampton NHS Foundation Trust CSCCN - Central South Coast 0 PR * = Resolved 12

Neuroscience MDTs 11-2K-200 Team Network % Stage IR SC MDT - St George's SWLCN - South West London 94 PR SC MDT - Queen's NELCN - North East London 87 PR SC* MDT - University Hospitals Birmingham Foundation Trust PBCN - Pan-Birmingham 83 PR SC MDT - Charing Cross NWLCN - North West London 80 PR MDT - Newcastle NECN - North of England 80 PR SC MDT - National Hospital for Neurology and Neurosurgery MDT - Salford NCLWECCN - North Central London and West Essex CCN GMCCN - Greater Manchester & Cheshire 77 PR IR 77 PR SC MDT - Walton MCCN - Merseyside & Cheshire 73 PR MDT - Hull And East Yorkshire Hospitals NEYHCA - North East Yorkshire and Humber Clinical Alliance 71 PR SC MDT - University Hospital North Staffordshire NHS Trust GMCN - Greater Midlands 71 PR SC MDT - Sheffield NTCN - North Trent 67 PR SC MDT - University Hospitals Southampton NHS Foundation Trust CSCCN - Central South Coast 67 PR SC MDT - South Tees NECN - North of England 65 PR SC* MDT - BSUH SCN - Sussex 63 PR SC* MDT - Oxford University TVCN - Thames Valley 61 PR SC MDT - Lancashire Teaching Hospitals LSCCN - Lancashire & South Cumbria 60 PR SC MDT - University Hospital Coventry and Warwickshire NHS Trust ArCN - Arden 60 PR SC MDT - Leeds Teaching YCN - Yorkshire 58 PR SC MDT - North Bristol ASWCN - Avon, Somerset & Wiltshire 58 PR SC MDT - Kings College SELCN - South East London 53 PR SC* MDT - Plymouth PCN - Peninsula 53 PR IR SC MDT - Barts & London NELCN - North East London 52 PR SC* MDT - Nottingham University Hospitals NHS Trust EMCN - East Midlands 51 PR IR* SC MDT - Walton - Pituitary MDT MCCN - Merseyside & Cheshire 50 PR SC* MDT - Addenbrookes AngCN - Anglia 47 PR SC * = Resolved 13

11-2K-300 Team Network % Stage IR SC MDT - Charing Cross NWLCN - North West London 93 SA MDT - Oxford University TVCN - Thames Valley 90 PR MDT - BSUH SCN - Sussex 86 SA MDT - Salford GMCCN - Greater Manchester & Cheshire 83 PR MDT - Sheffield NTCN - North Trent 63 PR MDT - University Hospital North Staffordshire NHS Trust GMCN - Greater Midlands 62 SA MDT - National Hospital for Neurology and Neurosurgery MDT - North Bristol NCLWECCN - North Central London and West Essex CCN ASWCN - Avon, Somerset & Wiltshire 60 PR 60 PR SC MDT - University Hospitals Birmingham Foundation Trust PBCN - Pan-Birmingham 60 PR MDT - Leeds Teaching YCN - Yorkshire 57 PR SC MDT - Kings College SELCN - South East London 53 PR SC* MDT - Newcastle NECN - North of England 50 PR SC MDT - University Hospitals Southampton NHS Foundation Trust CSCCN - Central South Coast 47 PR SC MDT - Addenbrookes AngCN - Anglia 43 PR SC MDT - Hull And East Yorkshire Hospitals NEYHCA - North East Yorkshire and Humber Clinical Alliance 43 PR IR SC * = Resolved 14

11-2K-400 Team Network % Stage IR SC MDT - Salford GMCCN - Greater Manchester & Cheshire 80 PR MDT - Sheffield NTCN - North Trent 73 PR MDT - University Hospitals Birmingham Foundation Trust PBCN - Pan-Birmingham 70 PR MDT - BSUH SCN - Sussex 63 PR SC* MDT - Charing Cross NWLCN - North West London 60 PR SC MDT - Addenbrookes AngCN - Anglia 57 PR SC MDT - National Hospital for Neurology and Neurosurgery NCLWECCN - North Central London and West Essex CCN 43 PR SC MDT - Kings College SELCN - South East London 40 PR MDT - Nottingham University Hospitals NHS Trust MDT - University Hospitals Southampton NHS Foundation Trust EMCN - East Midlands 31 PR SC CSCCN - Central South Coast 23 PR IR SC* * = Resolved 15

11-2K-500 Team Network % Stage IR SC MDT - Newcastle NECN - North of England 83 PR MDT - BSUH SCN - Sussex 57 PR SC* MDT - National Hospital for Neurology and Neurosurgery NCLWECCN - North Central London and West Essex CCN 50 PR SC MDT - University Hospitals Southampton NHS Foundation Trust CSCCN - Central South Coast 20 PR IR SC * = Resolved 16

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