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Cancer National Specialist Advisory Group National Standards for Cancer Services for Adults with Brain and Other CNS Tumours January 2014
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TABLE OF CONTENTS 1. INTRODUCTION TO THE NATIONAL CANCER STANDARDS ................................. 2 2. SCOPE OF THE STA NDARDS .................................................................................. 3 3. METHODOLOGY ........................................................................................................ 4 4. FORMAT ..................................................................................................................... 5 5. KEY REFERENCES .................................................................................................... 5 6. EPIDEMIOLOGY ......................................................................................................... 6 TOPIC: ORGANISATION .......................................................................................... 10 TOPIC: PATIENT-CENTRED CARE ......................................................................... 17 TOPIC: MULTIDISCIPLINARY TEAM ....................................................................... 22 TOPIC: INITIAL INVESTIGATIONS AND TIMES TO TREATMENT ......................... 31 TOPIC: DIAGNOSIS, STAGING AND TREATMENT ................................................ 35 APPENDIX 1 -Membership of the Cancer NSAG Brain and Other CNS Tumour Standards Group ........................................................................................................... 54 APPENDIX 2 - List of acronyms used in main document .............................................. 55 APPENDIX 3 - Definitions and morphology codes ........................................................ 56 APPENDIX 4 - Diagnostic pathways and investigations (all suspected CNS tumours) . 57 APPENDIX 5 - Imaging Guidelines For Brain Tumours, ................................................ 58
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1. INTRODUCTION TO THE NATIONAL CANCER STANDARDS
1.1 The Healthcare Standards for Wales1 set out the Welsh Government’s (WG’s)
common framework of healthcare standards to support the NHS and partner
organisations in providing effective, timely and quality services across all healthcare
settings. The Healthcare Standards are used by Healthcare Inspectorate Wales as part
of their processes for assessing the quality, safety and effectiveness of healthcare
organisations across Wales.
1.2 To complement the Healthcare Standards, the National Cancer Standards define
the core aspects of the service that should be provided for cancer patients resident in
Wales. Planning departments should use these standards to form the basis of care for
Welsh residents whether provided by Welsh or English providers. The standards should
be used in conjunction with other requirements, for example the recommendations and
guidelines that cover patient care, facilities and staff from the Health and Safety
Executive, NHS, Royal Colleges and the National Institute for Health and Clinical
Excellence (NICE). Local Health Boards2 (LHBs) may provide or aim to provide
additional services and work to more rigorous and/or wide-ranging standards. This
should be encouraged.
1.3 A series of National Cancer Standards were published in 2005. This latest set of
standards for the management of brain and other central nervous system (CNS)
tumours follows the format of the 2005 standards, and incorporates the key principles
recommended by the NICE Service Guidance published in 2006 Improving Outcomes
for People with Brain and Other CNS Tumours3.
1 Welsh Assembly Government (2005) Healthcare Standards for Wales: Making the Connections Designed for Life, NHS Wales 2 In all cases, the term LHB includes Velindre NHS Trust 3 Web link: http://guidance.nice.org.uk/CSGBrainCNS/Guidance/pdf/English
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1.4 Ongoing implementation of the Cancer Information Framework4 will support the
implementation of these new Standards as it focuses on the clinical information required
for cancer teams and discussed at the team meeting.
2. SCOPE OF THE STA NDARDS 2.1 These standards cover adults and young adults5 with tumours of the brain and
CNS. In light of differing approaches in the management of brain tumours occurring in
children and young adults, they should be implemented in line with the National Cancer
Standards for Teenagers and Young Adults with Cancer (published 2012) covering
ages 16 to 24. Young adults suffer from a wider spectrum of brain tumours ranging from
adult to paediatric type tumours requiring different treatment strategies. The standards
cover both primary tumours and metastases from other primary sites that require
complex neurological or neurosurgical interventions. Metastases from other primary
tumour sites are extremely rare diagnoses in young adults.
2.2 Primary CNS tumours are uncommon with the majority being brain gliomas,
meningiomas or metastatic tumours. Other rarer tumours are also included in this
category and are:
• Spinal cord tumours
• Skull based tumours
• Pituitary tumours
• Pineal tumours
• Primary CNS lymphomas (PCNSL)
• Optic Pathway Glioma
• Primitive Neuroectodermal Tumours (PNET)
• Tumours associated with genetic predispositions
2.3 Paediatric type brain tumours in young adults are:
• Pineoblastoma 4 Cancer Information Framework WHC(2000)40 Apr 2000 5 Throughout this document young adults will be taken as persons aged between 18 and 24
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• Pilocytic astrocytoma
• Primitive neuroectodermal Tumours (PNET) – supratentorial or Infratentorial
• Intracranial Germ Cell Tumours (secreting and nonsecreting)
• Craniopharyngioma
2.4 The standards also take account of the NICE guidance for adults who have, or are
at risk of developing, metastatic spinal cord compression because they have cancer
elsewhere in their body that has spread to their spine.
2.5 Brain injury whether as a result of malignancy or the treatment to treat malignancy
may cause co-morbidities particularly related to the motor and sensory activities of the
brain. Reflecting this, rehabilitation of the patient post treatment is an important aspect
of the patients care and as such these standards should also link with the National
Standards for Rehabilitation of Adult Cancer Patients (2010). There are also appropriate
links to Welsh Government standards regarding stroke care.
2.6 Assessment of compliance to the National Standards for Cancer Services for
Adults with Brain and Other CNS Tumours should be measured alongside that of the
National Standards for Cancer Rehabilitation Services 2010 with a view to ensuring the
needs of patients requiring neuro rehabilitation are met.
3. METHODOLOGY 3.1 WG requested the National Specialist Advisory Group for Cancer (Cancer NSAG)6
to oversee the development of National Cancer Standards for the management of Brain
and other CNS tumours. A group was convened involving clinical and patient experts
from each of the Welsh Cancer Networks, the Neurosurgical Centre at the Walton
Centre NHS Foundation Trust, Liverpool and representation from Welsh Health
Specialist Services Committee. Membership is listed in Appendix 1. The generic
National Cancer Standards issued in 2005 formed the basis of these standards.
6 Formerly the Cancer Services Co-ordinating Group (CSCG)
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Additional standards have been added that take account of the recommendations of
‘Improving Outcomes in People with Brain and other CNS tumours’ published by NICE
in 2006.
4. FORMAT 4.1 The standards are presented as a series of key Topics with one or more objectives
and specific standards. These address the organisational and service requirements that
are key to effective delivery of care and the main stages in the patient journey.
4.2 Within each Topic, a Rationale is presented that provides the context to the
specific objectives and standards that follow.
4.3 Mapping to the Healthcare Standards has been undertaken at the level of the
objective. The associated Healthcare Standards are listed after the rationale for each
objective.
4.4 Attached to each standard are monitoring criteria. The monitoring criteria are
included in this document as indicative of the monitoring required. A separate and more
detailed self assessment monitoring tool will be developed and piloted in 2012 for the
2003/14 financial year.
5. KEY REFERENCES • National Cancer Standards for Children with Cancer (2011)
• National Standards for Teenagers and Young Adults with Cancer Aged 16 – 24
Years (2012)
• Draft Brain and CNS Measures for the Manual for Cancer Services, Department of
Health (2011)
• National Standards for Rehabilitation of Adult Cancer Patients (2010) Welsh
Government.
• Department of Health & Macmillan Cancer Support (2010) National Cancer
Survivorship Initiative
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• Metastatic spinal cord compression: diagnosis and management of adults at risk of
and with metastatic spinal cord compression, NICE, CG75, (November 2008)
• The Joint Collegiate Council for Oncology. Principles to underpin the delivery of
radiotherapy and chemotherapy services to NHS cancer patients. Royal College of
Physicians and the Royal College of Radiologists (2007)
• Improving Outcomes in People with Brain and CNS Cancers, Manual. National
Institute of Health and Clinical Excellence (2006)
• Improving supportive and palliative care for adults with cancer (2004) National
Institute for Health and Clinical Excellence
• Improving Quality in Cancer Care. Reducing Delays in Cancer Treatment. A Report
of the Joint Council for Clinical Oncology (1994)
• NICE Referral Guidelines For Suspected Cancer (2005)
6. EPIDEMIOLOGY 6.1 These standards apply to patients with primary or secondary brain and other CNS
tumours. The data in this section however are limited to patients with primary brain and
other CNS tumours as patients with secondary brain and other CNS tumours are not
registered7.
6.2 Considering all ages, the mean age of diagnosis of a primary brain and other CNS
tumours for persons is 56.8 years, with an average of 260 registrations per annum for
the period 1995-2009 (145 males, 115 females)8. These cancers are relatively
uncommon, being the 13th most common cancer accounting for 1.6% of cancer
diagnoses. The mortality:incidence ratio for persons is high at 65.2% reflecting generally
poor outcomes. Comparisons with other countries with published incidence and
mortality data, show that Wales has the highest rate for incidence but lower than
average rate for mortality.
7 WCISU Triennial Report 2011: section 10.3 Brain and Central Nervous System Cancer 8 WHO codes included are C70, C71 and C71; list of all WHO Brain & Other CNS Cancers in APPENDIX 3 – Definitions and morphology codes
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6.3 Over the time period 1995 to 2009 there has been a significant decrease in the
percentage annual change in the European Age Standardised Rate (EASR) for
incidence in persons (-0.9%) with no change in relation to the percentage annual
change in the EASR for mortality (Figures 1 and 2).
Figure 1: Trends in incidence of primary brain and other CNS Cancers in Wales, for patients diagnosed between 1995 and 2009 (all ages)
Data source: WCISU Figure 2: Trends in mortality of primary brain and other CNS tumours in Wales, for patients diagnosed between 1995 and 2009 (all ages)
Data source: WCISU
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6.4 There has been a decline in age-specific incidence rates in the elderly population
(data not shown). Interestingly, unlike many other cancers, there is no clear impact of
deprivation on either incidence or mortality.
6.5 Table 1 summarises by LHB data on prevalence of brain and other CNS tumours
for 1995 to 2009 and shows this to be between 0.02% and 0.03% of the population.
Table 1: Prevalence of brain and other CNS tumours in Wales, for patients diagnosed between 1995 and 2009 (all ages) Local Health Board
Number alive Rate per 100,000 population
% prevelance in population
Males Females Persons Males Females Persons Males Females Persons Betsi Cadwaladr University Health Board
88 101 189 26.5 29.1 27.8 0.03 0.03 0.03
Powys Teaching Health Board 16 11 27 24.5 16.6 20.5 0.02 0.02 0.02
Hywel Dda Health Board 52 42 94 28.5 21.8 25.1 0.03 0.02 0.03
Abertawe Bro Morgannwg University
67 68 135 27.2 26.5 26.8 0.03 0.03 0.03
Cardiff & Vale University Health Board
64 68 132 28.5 28.8 28.6 0.03 0.03 0.03
Cwm Taf Health Board 42 36 78 29.7 24.2 26.9 0.03 0.02 0.03
Aneurin Bevan Health Board 88 72 160 32.2 25.1 28.6 0.03 0.03 0.03
Data source: WCISU
6.6 These tumours comprise of a heterogeneous mix of diagnoses ranging from low-
grade gliomas with prolonged survival through to glioblastoma multiforme, one of the
most clinically aggressive cancers. Considering all brain and other CNS tumours
together, one, three, five and ten year survival for persons diagnosed between 1995
and 2009 are shown in Figure 3. The latest one year survival for patients diagnosed
between 2005 and 2009 was found to be 37.5% (Figure 3). Table 2 shows data
comparing survival by LHB at one year over the three five year time periods and shows
no significant change.
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Figure 3 Trends in survival for brain and other CNS tumours in Wales, for persons diagnosed between 1995 and 2009 (all ages)
Data source: WCISU
Table 2 Trend 1 year relative survival by LHB (all ages)
Local Health Board One year survival (95% confidence interval) 1995-1999 2000-2004 2005-2009
Betsi Cadwaladr University Health Board 29.0 33.0 38.5
(23.7,34.5) (27.5,38.6) (32.3,44.7)
Powys Teaching Health Board 33.0 31.5 35.8
(21.5,45.0) (19.4,44.3) (22.3,49.6)
Hywel Dda Health Board 30.5 29.0 26.8
(23.7,37.6) (21.9,36.4) (20.1,34.0)
Abertawe Bro Morgannwg University Health Board
30.3 26.3 31.9 (24.3,36.5) (20.6,32.4) (25.6,38.4)
Cwm Taf Health Board 28.9 25.9 40.4
(20.2,38.1) (17.9,34.6) (30.7,50.0)
Aneurin Bevan Health Board 32.1 30.8 31.9
(25.6,38.8) (24.7,37.1) (26.1,38.0)
Cardiff & Vale University Health Board 33.2 39.5 40.3
(25.7,41.0) (31.2,47.6) (32.6,47.8) Data source: WCISU
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TOPIC: ORGANISATION OBJECTIVE 1: TO STRUCTURE CANCER NETWORKS SUCH THAT THEY BRING TOGETHER KEY STAKEHOLDERS IN BOTH PLANNING AND PROVIDING CANCER CARE, WITH AN OPEN AND TRANSPARENT MANAGEMENT STRUCTURE Rationale: Because of the number of potential diagnoses and the fact that patients with
brain or other CNS tumours often present with a range of physical, cognitive and
psychological symptoms, there can be long delays in reaching a diagnosis. Good co-
ordination and communication between the specialists involved will help speed up the
diagnostic process and reduce anxiety experienced by patients and their carers. It will
also support patients living in rural areas remote from major centres.
The National Standards for Cancer Rehabilitation Services require there to be a
Network Rehabilitation Advisory Group (NRAG) and as such it should be the case that a
formal link is made between the NRAG and the Neuroscience Multidisciplinary Team
(NSMDT). Rehabilitation should be configured as appropriate with effective
communication pathways between secondary and primary care assured. Oversight of
rehabilitation services may be via an MDT structure discrete from the NSMDT, however
operational links are essential and continuity should be assured through the key worker,
records and joint MDT membership.
The Chief Executive of the organisation on whose premises care is being delivered
remains the accountable officer for the quality of care. Where the NSMDT provides care
to more than one organisation, clear agreements will be required between organisations
about how clinical governance responsibilities are to be carried out. In relation to team
working, the recommendations made at the team meeting are advisory, and the
responsibility for clinical decisions and actions always rests with the senior clinician
under whose care the patient is at that point in their journey.
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1.1 STANDARD The management arrangements and accountability for the host Cancer Network
are documented.
MONITORING CRITERIA The establishment agreement detailing host Cancer Network management
accountability is held by WG.
1.2 STANDARD Agreements on clinical governance lines of accountability for the NSMDT and its
associated, referring cancer MDTs are clearly documented if provided by more
than one organisation.
MONITORING CRITERIA Documentation is available detailing agreements on lines of accountability for
clinical governance.
1.3 STANDARD The host Cancer Network in collaboration with its stakeholders produce a Service
Development Plan for the NSMDT, which takes account of the requirements of the
National Cancer Standards for Wales and is updated annually.
MONITORING CRITERIA a. The host Cancer Network Service Development Plan for the NSMDT is
approved by the Network Board and all stakeholders of the service and is
available for external peer review.
b. The host Cancer Network reports to its Board on implementation of the
service plan.
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OBJECTIVE 2: CARE PROVIDED BY TEAMS ARE WELL CO-ORDINATED TO PROVIDE AN EFFICIENT, EFFECTIVE SERVICE TO PATIENTS Rationale: As with the previously published National Cancer Standards, effective
management of patients with brain and other CNS tumours requires a coordinated
multidisciplinary team approach. To effectively work as a team, particularly across
Departments within a Health Board, co-ordination and clinical leadership are required.
Access to an identified key worker will be provided to every person diagnosed to
support them and their families9.
The LHB Cancer Lead Clinician (CLC) is accountable to the Board via the Medical
Director or Executive Lead for Cancer and is responsible for identifying requirements to
ensure cancer teams comply with the cancer standards. The CLC needs to be
supported by a senior management team and is expected to ensure care pathways are
in place, understood by the relevant clinical teams and followed.
The healthcare of patients with brain and other CNS tumours is complex necessitating
care often being provided at different locations. A designated lead in every acute
hospital, reporting to the CLC, is required to make sure that all patients with or
suspected as having brain and other CNS tumours are referred promptly to the NSMDT.
There will be a limited number of NSMDTs across England and Wales. Patients in North
Wales will be expected to continue to be referred to the NSMDT at Walton. In South
Wales, patients will be referred to the NSMDT in Cardiff. It will be important that
effective communication is established at all levels to ensure continuity of care and
appropriate service developments. Prompt referral to the NSMDT is also required for
those patients where their cancer has spread to the brain or CNS and who may benefit
from surgery or stereotactic radiotherapy.
9 http://www.welshlabour.org.uk/uploads/welsh-labour-manifesto.pdf
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2.1 STANDARD Each LHB has an identified Cancer Management Team that reflects the manner in
which cancer is treated across the management structures. Each team includes at
a minimum:
a. A Cancer Lead Clinician
b. A designated Lead Manager
c. The lead Cancer Co-ordinator
d. A nominated Executive Lead
e. A designated Lead Cancer Nurse/Allied Health Professional
MONITORING CRITERIA
Documentation is available detailing names and designation and a description of
how the hospital cancer management team relate to internal management
structures.
2.2 STANDARD
The CLC is appointed by the Chief Executive and will have recognised dedicated
sessional time with administrative and senior management support.
MONITORING CRITERIA Job plan details role, sessional time and management support for CLC.
2.3 STANDARD
The CLC attends both LHB and Network cancer meetings as appropriate.
MONITORING CRITERIA Detail available in Job Plan.
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2.4 STANDARD The network Medical Director/Lead Clinician is confirmed by and has clinical
responsibility to the host Cancer Network Board in consultation with their
respective CLC and Medical Director or Executive Lead.
MONITORING CRITERIA Host Network documentation is available.
2.5 STANDARD The network NSMDT lead clinician will be a core member of the team and will;
a. Have overall responsibility for team working, the team meeting, clinical audit
and communication with referring units.
b. Provide clinical advice and co-ordinate any modernisation projects that are
associated with working of the MDT
c. Have dedicated administrative and secretarial assistance to support the
functioning of the MDT
d. Attend both LHB and Network cancer meetings as appropriate
MONITORING CRITERIA
Responsibility detailed in job plan with evidence provided of
a. Regular team meetings with attendance register
b. Clinical audit undertaken
c. Service modernisation e.g. process mapping and capacity/demand studies
d. Dedicated administrative and secretarial staff
e. Attendance at LHB and Network meetings
2.6 STANDARD The network NSMDT Lead Clinician will work with the cancer management team to
ensure the team:
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a. Provides rapid diagnostic and assessment services for patients referred with
suspected primary or secondary Brain or other CNS Cancer.
b. Develop management plans for patients at first presentation, to include initial
supportive care needs, diagnostic, surgical and oncology interventions,
treatment of symptoms and follow up.
c. Review and advise on patients referred back to the NSMDT on disease
progression or relapse.
d. Has worked with the referring units, cancer MDTs and GPs to produce and
disseminate evidence-based referral protocols that detail the investigations
required dependent on the patient referral pathway.
e. Has formal working arrangements with the following to review care pathways
and protocols:
i. referring designated diagnostic clinics;
ii. cancer MDTs managing patients with secondary cancers in the
brain.
f. Provides information, advice and support to patients.
g. Liaises with the primary care team and ensures clinic letters reach the patient’s
GP within a week of the MDT meeting.
h. Adequate provision is made for rehabilitation in terms of referral and specialist
skills.
MONITORING CRITERIA The network NSMDT Lead Clinician provides evidence that there are active,
written, working policies and protocols detailing the requirements of the standard.
2.7 STANDARD
All patients with brain and other CNS tumours are allocated a key worker
confirmed by the NSMDT or primary care team dependent on who is managing
care at each point in the care pathway including rehabilitation. Initially, this is done
at the MDT meeting where the management plan is agreed. The key worker
contacts the patient within 7 days of being first allocated to a new patient.
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MONITORING CRITERIA a. Each MDT to detail arrangements for ensuring that a key worker is assigned to
each patient with a clearly defined role10 that includes liaising with the primary
care team.
b. The key worker to provide evidence from audit that initial contact with each new
patient was within 7 days.
2.8 STANDARD
The LHB hosting the NSMDT adopt a process involving representatives from the
host Cancer Network and associated stakeholder organisations, by which the
Cancer Management Team report to their Board at least annually on compliance
with the National Cancer Standards for brain and other CNS tumours.
MONITORING CRITERIA a. Outline of process for annual assessment.
b. Minutes of Trust Board meeting covering report on compliance to standards.
10 The key worker is the person who, with the patient’s consent, takes the role of coordinating the patient’s care and promoting continuity, ensuring the patient knows who to access for information and advice. The key worker may come from any of the disciplines involved in the MDT (standard 4.2).
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TOPIC: PATIENT-CENTRED CARE OBJECTIVE 3: TO ENSURE THAT PATIENTS AND/OR THEIR CARERS HAVE
SUPPORT AND ALL THE INFORMATION THEY REQUIRE REGARDING THE
DIAGNOSIS, TREATMENT OPTIONS, TREATMENT AND REHABILITATION CARE
PLAN
Rationale: Appropriate information, whether provided via face-to-face communication
or in written form, is required to support patients and their carers throughout the cancer
journey. All healthcare professionals need to be sensitive to potential communication
problems 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. Every
person diagnosed with cancer should have their own care plan which includes clear
milestones for rapid diagnosis, treatment and rehabilitation11.
The psychological needs of patients are often not addressed12. 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.
11 http://www.welshlabour.org.uk/uploads/welsh-labour-manifesto.pdf 12 National Service Framework No 1. NHS Cancer Care in England and Wales, Commission for Health Improvement, 2001
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3.1 STANDARD The network NSMDT agree an operational policy regarding:
a. Communication between the NSMDT, the diagnostic clinician/team at the
referring hospital and the GP13,14
b. Communication between members of the team
c. Communication between the team members and the patient and their carers
d. Communication skills training15 for team members with direct patient contact
especially those involved in breaking bad news
e. Adequate time for patients to consider treatment options
MONITORING CRITERIA
Detail of communication policy to include:
a. Evidence of communication skills assessment
b. Evidence that the MDT has considered the views of its patients or carers
regarding the appropriateness of communication
3.2 STANDARD
Written information in an appropriate language and format is offered to each new
cancer patient. This covers:
a. General background information about the specific cancer
b. Detail of treatment options, specific local arrangements including information
about the NSMDT and support services and whom the patient should contact if
necessary
c. Details of self-help/support groups and other appropriate organisations
MONITORING CRITERIA The NSMDT to provide evidence that information covers:
a. General background information about the specific cancer 13 Key information points are included in APPENDIX 4 – Diagnostic pathways and investigations (all suspected CNS tumours). 14 NICE: Referral Guidelines for Suspected Cancer (2005) http://guidance.nice.org.uk/CG27 15 The level of training required should be determined by the LHB.
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b. Detail of treatment options, specific local arrangements including information
about the MDT and support services and whom the patient should contact if
necessary
c. Details of self-help/support groups and other appropriate organisations
d. Identify the source of information
e. When information was last reviewed/ updated
f. What languages are provided
3.3 STANDARD
The NSMDT will nominate a person to be responsible for ensuring written
information is offered to all new patients.
MONITORING CRITERIA Name of responsible person and detail of provision of written information within the
communication policy.
3.4 STANDARD
A designated person(s) is responsible for ensuring that written information is
generally available in appropriate wards/outpatient areas and is checked and
replenished when necessary.
MONITORING CRITERIA
Name of responsible person.
3.5 STANDARD The LHB hosting the NSMDT ensures all communication with patients with special
needs in relation to language, culture and physical or learning disabilities is
addressed.
MONITORING CRITERIA Detail audit of LHB’s communication policy.
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3.6 STANDARD There will 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 NSMDT.
MONITORING CRITERIA
Details are provided of facilities available.
3.7 STANDARD
The NSMDT ensures that patients are assessed and referred for ongoing support
following treatment. Specifically this addresses:
a. Psycho-social support
b. Spiritual support
c. Rehabilitation
d. Palliation
MONITORING CRITERIA The NSMDT to detail the arrangements for assessment of ongoing support
following treatment.
3.8 STANDARD Patients found to have significant levels of anxiety and/or depression are 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.
MONITORING CRITERIA
Detail access arrangements.
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3.9 STANDARD Cancer Networks and service planners facilitate a Network wide approach to
psychological support services as recommended in the NICE Supportive and
Palliative Care Guidance.
MONITORING CRITERIA
Cancer Networks/service planners to detail access arrangements.
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TOPIC: MULTIDISCIPLINARY TEAM
OBJECTIVE 4: TO ENSURE THAT CARE FOR PATIENTS WITH BRAIN AND
OTHER CNS TUMOURS IS PROVIDED BY A SPECIALIST MULTIDISCIPLINARY TEAM
Rationale: Patient care needs to be provided by a team of specialists with a range of
expertise within different specialties to ensure provision of high quality care. NICE
guidance16 is based on the expectation that the NSMDT will meet on a weekly basis
and manage at least 100 new patients a year.
For brain and other CNS tumours, Improving Outcomes Guidance recommended
referral to an NSMDT that works closely with a non surgical Cancer Network MDT as
the configuration to effectively utilise resources to achieve best clinical outcomes for
patients and carers. Since then, the National Standards for Cancer Rehabilitation
Services 2010 require much more co-ordinated rehabilitation than previously. Each
patient will have a key worker and care plan and each Cancer Network a Rehabilitation
Advisory Group. In light of this it is recommended that access to appropriate
rehabilitation services should be overseen by the NSMDT. This may be through
integrated membership or referral to a recognised Rehabilitation MDT that has the skill
set and resources to deliver neuro rehabilitation in all settings.
Brain metastases occur in 20-40% of systemic cancers and pathways for referral to the
NSMDT are in place where cases need consideration by the neuro-oncology team:
• Where tissue diagnosis is required
• Where resection would improve quality of life or survival
• Where stereotactic radiosurgery or stereotactic radiotherapy is considered
16 NICE Service Guidance Improving Outcomes for People with Brain and Other CNS Tumours 2006, http://guidance.nice.org.uk/CSGBrainCNS/Guidance/pdf/English
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In light of differing approaches in the management of brain tumours occurring in children
and young adults, the standards in this topic should be implemented in line with the
National Standards for Children with Cancer aged 0 to 15 years (published 2011) and
the National Cancer Standards for Teenagers and Young Adults aged 16 to 24 years
(published 2012).
A programme of national clinical audit, defining performance against the National
Cancer Standards, will provide service planners, the public, and WG with the
information needed to maintain and improve cancer services. Identifying and rewarding
areas of strength are important for morale and motivation. By developing an effective
audit programme for all cancers, it is important to benchmark outcomes across the UK
and this is particularly important for the less common and rare cancers such as those
included as brain and other CNS tumours. As a result of audit, Cancer Networks hosting
a NSMDT can define whether any weaknesses are due to organisational factors or to
resource issues, which is a distinction that is of the utmost importance in seeking the
appropriate remedy.
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4.1 STANDARD An agreed area-wide referral pathway is in place to allow access to the age
appropriate, Teenage and Young Adult Multidisciplinary Team (TYA MDT).
MONITORING CRITERIA Compliance with standard referral pathway to TYA MDT for 16 to 24 year olds17.
4.2 STANDARD
All cases of suspected new brain and other CNS tumours are reviewed at the
NSMDT meeting and/or allied MDT meeting18 and a treatment plan agreed and
documented.
MONITORING CRITERIA
Data and treatment plans for all new patient referrals per year to be provided by
the NSMDT.
4.3 STANDARD Where urgent treatment of a newly diagnosed brain or other CNS tumour is
required the case is discussed at the next NSMDT meeting and the further care
plan agreed at that stage.
MONITORING CRITERIA
Audit of care plans:
a. Number of TYA cases offered access to paediatric brain tumour treatment
strategies.
b. Time to final agreed care plan for urgent cases requiring to start treatment
prior to care plan.
17 Monitored as part of the National Cancer Standards for Teenagers and Young Adults with Cancer (2012) 18 For example MDTs for pituitary tumours, spinal tumours of CNS origin and skull base tumours.
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4.4 STANDARD All clinicians treating brain and other CNS tumours are designated members of a
NSMDT with the team managing at least 100 new patients a year.
MONITORING CRITERIA
Detail of designation status
4.5 STANDARD The NSMDT includes the following core specialists with a particular and declared
interest in brain and other CNS tumours. All will have time allocated in their job
plan to attend the MDT meeting. There are two members from each specialty to
ensure specialist cover at all times.
a. Neurosurgeons19
b. Neuroradiologists20
c. Neuropathologists21
d. Oncologists
e. Clinical Nurse Specialists
f. A health professional member of the specialist palliative care team
g. Specialist Allied Health Professionals (AHPs) with responsibility for liaison with
neurorehabilitation services, including physiotherapists, occupational therapists,
speech and language therapists, and dieticians
h. MDT co-ordinator/data clerk
Extended MDT members
Representatives from:
• Neurology
19 Each member should spend at least 50% of their clinical programmed activities in neuro-oncological surgery and be regularly involved in dedicated specialty clinics caring for these patients. 20 Each member should spend at least 50% of their clinical programmed activities in neuro-radiology. 21 This must be an accredited neuropathologist who has specialist expertise in neuro-oncology, and takes part in NEQA scheme for neuropathology organised by the British Neuropathological Society.
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• Neuropsychology
• Psychology/psychiatry
• Neuropsychiatry
• Epilepsy nurse specialists
• Consultant Paediatric Oncology Representation
• Liaison Worker with Teenage Cancer Unit
MONITORING CRITERIA
a. Detail names of NSMDT clinical members and their sessional commitment22 to
the MDT23 confirmed by a copy of their current job plan. Evidence of appraisal
in the specialty and the settings of outcomes related to brain and other CNS
tumours.
b. Histopathologists to detail evidence of participation in histopathological External
Quality Assessment (EQA) for brain and other CNS tumours.
c. Detail evidence that expert cover is provided when a core MDT member is
absent.
d. Detail arrangements for coordination and secretarial support.
4.6 STANDARD For Pituitary tumours, spinal tumours of CNS origin and skull base tumours, either
the core team meeting as detailed in standard 4.5 is supplemented by additional
specialists or a separate MDT meeting is held.
Pituitary tumours:
• A neuro or Ear, Nose and Throat (ENT) surgeon with a practice in pituitary
surgery
• An endocrinologist with a practice in pituitary disorders
• Oncologist
22 Sessional commitment is defined as direct clinical care or supporting professional activities. 23 Direct Clinical Care (DCC) or Supporting Professional Activities (SPA).
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Extended MDT members:
• Consultant ophthalmologist with expertise in management of patients with visual
disturbance associated with a CNS tumour
• AHPs including prosthetics, speech and language therapists, dietetics and
others who have knowledge and expertise of dealing with this patient group
Spinal tumours of CNS origin:
• AHPs including occupational therapists, physiotherapists, dietetics and others
who have knowledge and expertise of dealing with this patient group
• An AHP with responsibility for liaison with neurorehabilitation services
Extended MDT members:
• A healthcare professional who is a member of a specialist palliative care team
Skull base tumours
• Neurosurgeon plus at least one other surgeon from ENT, maxillofacial,
ophthalmic or plastic surgeons24. The skull base team will include or have
access to surgeons proficient in reconstruction, including microvascular
techniques
• Clinical oncologist specialising in head and neck cancer
• An AHP with responsibility for liaison with neurorehabilitation services
Extended MDT members:
• AHPs including prosthetics, speech and language therapists, dietetics and
others who have knowledge and expertise of dealing with this patient group
• Consultant audio vestibular physician
24 Each surgeon is expected to dedicate a defined contractual element of their time to skull based cancer and participate in specialist skull base clinics
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MONITORING CRITERIA
a. For each cancer site team detail names of clinical members and their sessional
commitment to the MDT confirmed by a copy of their current job plan. Evidence
of appraisal in the specialty and the settings of outcomes related to brain and
other CNS tumours.
b. Detail names and access arrangements for the extended team
members/services.
c. Attendance at NSMDT.
d. Number of TYA cases discussed with consultant paediatric oncologist involved
during NSMDT.
4.7 STANDARD
A weekly team meeting forms the basis of the NSMDT’s clinical patient
management and inter-team communication. Each core member attends at least
50% of the team meetings and, together with their cover, ensures that no more
than 10% of meetings take place without input from their specialty.
MONITORING CRITERIA
a. Detail team meetings held and attendance of individual team members
b. Provide confirmation that the MDT documented working arrangements include
discussion at the MDT meeting of all newly diagnosed patients, all patients
following tumour resection and all patients with first recurrence
4.8 STANDARD The NSMDT must ensure that all patients are assessed for their rehabilitation
needs and a care plan agreed for delivery of this care. This care may be delivered
via the NSMDT or via referral to an established generic Rehabilitation MDT
capable of meeting the needs of neuro -rehabilitation
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MONITORING CRITERIA
a. Audit of patient care plans with details of the arrangements for assessment of
ongoing support needs.
b. NSMDT compliance with the National Standards for Cancer Rehabilitation
Services 2010
4.9 STANDARD Specialist AHPs25 skilled in addressing needs associated with dysfunction in
relation to communication, cognitive function, perception, physical ability and
emotion, are available throughout the LHB and that patients have rapid access to
them as and when appropriate.
MONITORING CRITERIA Detail access arrangements to the AHP services providing specialist rehabilitation
for complex needs.
4.10 STANDARD Multidisciplinary rehabilitation teams are available for the continued management
of patients with CNS tumours at home or in the community. This includes rapid re-
entry to rehabilitation services for late onset conditions and slow onset dysfunction
experienced irrespective of residual disease status. Where non-specialist services
are relied upon to provide these ongoing services, access to specialist cancer
rehabilitation professionals for support, education and training is available.
MONITORING CRITERIA Detail access arrangements to rehabilitation services available to provide ongoing
support to people with Brain and CNS cancers at home or in the community.
25 Working at level 4 according to the NICE Guidance for Supportive and Palliative care model of rehabilitation
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4.11 STANDARD The NSMDT ensures that all relevant sections of the all Wales Cancer Data Set
are completed for each new patient diagnosed with brain and other CNS tumours
so that the MDT is able to participate in national/UK clinical audits as specified by
the Cancer NSAG and the Healthcare Quality Improvement Partnership.
MONITORING CRITERIA
Detail the number of new brain and other CNS tumours referred to the MDT (or
members of the team) per year and recorded on the all Wales Cancer Data Set.
4.12 STANDARD Trusts ensure that expected registration of incidence is submitted to the Welsh
Cancer Intelligence and Surveillance Unit within 3 months of calendar year end.
The data submitted should be from all available sources including appropriate data
from Canisc, the Patient Episode Database for Wales (PEDW) and pathology
reports.
MONITORING CRITERIA WCISU to monitor registrations received against expected registration.
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TOPIC: INITIAL INVESTIGATIONS AND TIMES TO TREATMENT
OBJECTIVE 5: PATIENTS WITH BRAIN AND OTHER CNS TUMOURS SHOULD BE
REFERRED, DIAGNOSED AND TREATED 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. There is also
evidence that patient anxiety contributes to worse clinical outcomes26. Prompt access to
see a specialist will lessen this anxiety. Patients and/or their carers may want to discuss
the diagnosis and treatment with their GPs. The GP needs adequate information
transferred rapidly in order to support such patients at a time of great distress.
There are three main referral pathways for patients subsequently found to have a brain
or other CNS tumour from:
• a general practitioner
• an emergency admission
• an oncologist
The referral and diagnostic pathway is summarised in Appendix 3.
Timely access to modern diagnostic radiological, neuropathological and neurosurgical
services will improve the speed and accuracy of diagnosis
26 Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer. The National Institute for Clinical Excellence, 2004.
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5.1 STANDARD The NSMDT agrees referral guidelines for investigation and for use in primary and
secondary care for patients suspected of having a brain or other CNS tumour.
MONITORING CRITERIA The NSMDT lead clinician to confirm that
a. Referral guidelines follow NICE guidance for suspected brain and other CNS
tumours.
b. There is an agreed referral pro forma in place
c. A copy of the referral guidelines agreed by the NSMDT is held by the Network
Directors
d. Cancer Network Directors have made these referral guidelines available within
their Network.
5.2 STANDARD
Written referral pathways to diagnosis are drawn up by the NSMDT. This is done in
collaboration with the referring cancer MDT and primary care and details the
diagnostic investigations required and time to reporting the findings from whichever
point patients access the system27.
MONITORING CRITERIA
Confirmation that Network Directors have a copy of the agreed referral pathways.
5.3 STANDARD Cancer Networks ensure that referral pathways to the NSMDT are adhered to
particularly where pathways cross Trust or Network boundaries.
MONITORING CRITERIA Network Directors to provide evidence of review of agreed referral pathways.
27 Access as referral from the GP, via emergency admission, via oncologist
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5.4 STANDARD Patients referred as urgent with a suspected brain or other CNS tumour by the GP
to the NSMDT28, if diagnosed with cancer, start definitive treatment within 2
months of the receipt of the referral at the diagnostic clinic or hospital unless
emergency therapy is required
MONITORING CRITERIA Waiting times from receipt of confirmed ‘urgent suspected cancer’ referrals to start
of definitive treatment.
5.5 STANDARD
The GP is informed if the specialist downgrades an urgent suspected cancer
referral to non-urgent.
MONITORING CRITERIA Detail audit of downgraded referrals.
5.6 STANDARD Confirmation of the diagnosis, treatment plan and contact details of the key worker
reaches the GP within 24 hours of the patient being informed.
MONITORING CRITERIA Detail audit of timescale for required information to reach the GP.
5.7 STANDARD When diagnosed with a brain or other CNS tumour, patients not already included
as an urgent suspected cancer referral start definitive treatment within one month
from diagnosis regardless of referral route.
28 NICE Referral Guidelines For Suspected Cancer (2005) http://guidance.nice.org.uk/CG27
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MONITORING CRITERIA This standard is monitored centrally.
5.8 STANDARD Patients undergoing radiotherapy are treated within the maximum waiting times as
recommended by the Joint Collegiate Council for Oncology (JCCO).
MONITORING CRITERIA Detail audit of waiting times from receipt of the request form by the radiotherapy
department, or verbal request, to the date of the first radiotherapy fraction.
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TOPIC: DIAGNOSIS, STAGING AND TREATMENT
OBJECTIVE 6: PATIENTS WITH BRAIN OR OTHER CNS TUMOURS SHOULD BE
DIAGNOSED, STAGED AND TREATED PROMPTLY AND IN-LINE WITH BEST PRACTICE
Rationale: Clearly defined clinical policies will improve the consistency and equity of
care for these patients and the appropriate use of resources. For patients with brain and
CNS Tumour, NICE guidance recognises that early detection of recurrent disease and
hence follow up is of benefit.
There is good evidence from clinical trials that patients treated within a clinical research
trial setting fare better than those treated outside of a trial setting, and this is thought to
be due in large measure to the benefits of treatment according to documented
protocols, with details of action to be taken in case of adverse affects, dose escalation,
etc. Standardisation of therapy protocols/guidelines across the Network will enable
outcome assessment to be performed in a uniform manner, and staff gain expertise by
concentrating on a lesser number of well-defined protocols.
The percentage of teenagers and young adults accessing clinical trials is lower than for
children or adults. Teenagers and young adults are eligible for most clinical trials in the
paediatric neuro-oncology portfolio. Access occurs via the TYA MDT and should
become standard practice through the engagement with paediatric neuro-oncologists
during the early diagnostic stages.
In relation to rare cancers such as brain and other CNS tumours it is essential that the
NSMDT participates in European and other National or multinational clinical trials and
routinely refer patients to supraregional networks i.e. acoustic schwannoma in NF2.
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6.1 STANDARD Clinical management of patients follows written agreed clinical policies, in line with
the latest NICE guidance29 and other associated National Cancer Standards30 and
Clinical Guidelines.
These clinical policies are developed and implementation audited by the NSMDT
MONITORING CRITERIA Documentation detailing:
a) the agreed clinical policies including imaging for high risk patients on follow
up
b) access to genetic counselling
6.2 STANDARD Each NSMDT provides a written programme of audit to assess adherence to
clinical policies.
MONITORING CRITERIA Documentation of the audit programme of clinical policies, results and resulting
action plans is provided by the NSMDT lead clinician.
6.3 STANDARD A core member of the NSMDT is delegated to take responsibility for recruitment to
clinical trials. Patients are given the opportunity to enter all approved clinical
trials31 for which they fulfil the entry criteria. If a specific trial is not available the
patient is informed and given the choice of opting for treatment with another
NSMDT participating in the required trial.
29 NICE Service Guidance and NICE Health Technology Appraisals 30 Specifically National Standards for Cancer Rehabilitation Services 2010 and National Standards for Children with Cancer aged 0 to 15 years 31 The Cancer Delivery Plan defines and approved clinical trial as being “in high quality studies on the NISCHR portfolio or commercial research register”.
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MONITORING CRITERIA The NSMDT designated Clinical Trials Lead to provide documentation of all open
trials, trials that could be opened but have not, numbers of patients entered per
trial per year, and reasons for not entering into clinical trials. Close working
between adult and teenage and young adult research/data management staff is
required to avoid duplication and other errors.
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OBJECTIVE 7: THE MDT SHOULD HAVE ACCESS TO HIGH QUALITY IMAGING
SERVICES
Rationale: Imaging is important in the diagnosis and staging where appropriate of
patients with suspected brain and other CNS tumour. 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 and
particularly the teenage and young adult cohort who compared to adults suffer from a
higher number of malignant brain tumours that grow fast and are amenable to
aggressive treatment options. In this patient group early referral for specialised imaging
and investigations to the primary neurosurgical centre is required.
As a result the key objective is for any patient with a suspected brain or other CNS
tumour to access a rapid pathway to radiological diagnosis and, where this is confirmed,
prompt referral for management to the NSMDT.
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 and outcomes possible.
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7.1 STANDARD Imaging departments provide clear, written information to MDTs on the range of
investigations provided and their availability. To avoid delays in reaching a
diagnosis, where availability is limited or intermittent, particularly for complex
investigations, there are written alternative referral pathways agreed with the
Cancer Network.
MONITORING CRITERIA Copy of documentation to be provided by the appropriate clinical head of imaging
services.
7.2 STANDARD All Departments of Clinical Radiology have written policies on the referral and
imaging investigation of patients with cancer or suspected cancer by cancer site32.
MONITORING CRITERIA Detail of written policies to be provided by the appropriate clinical head
of imaging services.
7.3 STANDARD
Any patient fitting the guidelines for urgent referral33 or with any other clinical
concern that may indicate a brain or other CNS tumour, has rapid access to the
NSMDT.
MONITORING CRITERIA Audit of waiting times along with the referral pathway.
32 Appendix 5 - Imaging Guidelines For Brain Tumours 33 NICE Referral Guidelines For Suspected Cancer (2005) http://guidance.nice.org.uk/CG27
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7.4 STANDARD Where a brain or other CNS tumour is suspected there is a protocol in place for
rapid communication with the NSMDT. Standardised imaging protocols for staging
and tumour imaging for brain and other CNS tumour are agreed between the
NSMDT and the referring cancer MDTs34. All images are available for electronic
transfer and review by the NSMDT radiologists and discussion at NSMDT meeting.
MONITORING CRITERIA a. Cancer Network Directors to have copies of standardised protocols. Local
copies of documentation including details of electronic image storage, retrieval
and transfer protocols to be provided by the appropriate clinical lead of imaging
services.
b. Audit number of patients not imaged according to protocol requiring reimaging.
34 Current imaging protocols in APPENDIX 4 – Diagnostic pathways and investigations (all suspected CNS tumours)
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OBJECTIVE 8: THE MDT SHOULD HAVE ACCESS TO HIGH QUALITY
PATHOLOGY SERVICES.
Rationale: Neuropathology is pivotal in the diagnosis of CNS tumours. 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.
Specialist neuropathologists should preferably be members of the British
Neuropathological Society and participate in the relevant specialized national EQA
scheme.
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8.1 STANDARD All pathology laboratories participate in Technical EQA and Clinical Pathology
Accreditation (CPA).
MONITORING CRITERIA Certificate of participation in EQA/CPA
8.2 STANDARD
Reports on resection specimens comply with all items of the pathology component
of the all Wales Cancer Data Set.
MONITORING CRITERIA Audit of completeness of pathological reporting
8.3 STANDARD The NSMDT pathologists have ready access to in-house molecular
pathology/cytogenetics.
MONITORING CRITERIA Detail laboratory arrangements.
8.4 STANDARD Samples from retrospectively consented patients to the Wales Cancer Bank (WCB)
or the Children's Cancer and Leukaemia Group (CCLG) Tumour Bank for the
younger age group are made available when required by the pathology
department, once enough material has been assessed for diagnostic purposes.
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MONITORING CRITERIA a. Percentage of suitable cases that have been consented.
b. Percentage of requested samples supplied to WCB/CCLG Tumour Bank.
c. Audit of samples not supplied.
d. Audit of reasons for non-participation in WCB.
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OBJECTIVE 9: 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.
For several types of localised brain tumours (and benign brain conditions) Stereotactic
Radiosurgery35 is standard treatment. Stereotactic Radiotherapy35 e is a means of
delivering a high local dose to the tumour and reduced dose to normal brain. It has
advantages over conventional radiotherapy for some localised brain tumours.
There are circumstances where evidence exists for the superiority of one form of
technology over another and if such radiotherapy/radiosurgery is not available, referral
to the appropriate facility outside Wales should be considered. Stereotactic radiotherapy
should be available as an alternative to surgery in patients with low volume metastases
in the brain when the histopathological diagnosis is known.
Access to proton therapy is required according to the Referral Guidance of the National
Proton Referral Team.
35 Service Specification: Stereotactic Radiosurgery and Stereotactic Radiotherapy 2009 http://ncat.nhs.uk/sites/default/files/Service%20Specification%20Stereotactic%20Cranial%20Radiotherapy_0.pdf
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The general quality of procedures in the radiotherapy department will be reflected in
externally modulated quality schemes as originally specified by Quality Assurance in
Radiotherapy (QART).
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9.1 STANDARD Radiotherapy centres jointly agree definitions to monitor major long term morbidity
following radical radiotherapy.
MONITORING CRITERIA
Documentation of definitions of radiotherapy-related morbidity agreed by
radiotherapy centres and provided to Network Director.
9.2 STANDARD Major long-term morbidity rates following radical radiotherapy are monitored.
MONITORING CRITERIA
Audits of radiotherapy-related major morbidity by cancer. Results of audit to be
sent to the Network Director.
9.3 STANDARD
All radiotherapy centres have a recognised quality system accredited by an
authorised standards institution to a recognised standard.
MONITORING CRITERIA
Documentation of accreditation certification.
9.4 STANDARD Equipment capable of delivering conformal radiotherapy is available to each
Network.
MONITORING CRITERIA
a) Detail type and location of planning equipment.
b) Detail type and location of multi-leaf collimator-equipped linear accelerators.
c) Detail availability of treatment verification facilities.
d) Accreditation certification.
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9.5 STANDARD Equipment capable of delivering Intensity Modulated Radiotherapy (IMRT) is
available to each Network.
MONITORING CRITERIA Documentation of implementation of/or plans to implement IMRT.
9.6 STANDARD
Fractionated or hypofractionated stereotactic radiotherapy and single fraction
radiosurgery are available for patients with localised brain tumours when selected
by the MDT as the most suitable treatment.
MONITORING CRITERIA MDT protocols and documented patient pathways (including outside Wales).
9.7 STANDARD Patients receiving radiotherapy are treated according to a documented policy as
agreed with the NSMDT or in a formal clinical trial.
MONITORING CRITERIA
a. Radiotherapy centres to work to written clinical policies.
b. Clinical audit of compliance to policies to be undertaken with deviations from the
policy documented and reviewed.
9.8 Standard Patients have access to proton therapy where indicated.
MONITORING CRITERIA Documentation of the number of eligible patients for referral and treatment.
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OBJECTIVE 10: TO ENSURE PATIENTS RECEIVE CHEMOTHERAPY WHICH IS
PLANNED, PRESCRIBED, DELIVERED AND SUPERVISED IN A SAFE AND
EFFECTIVE MANNER
Rationale: As with all other forms of treatment, the results of chemotherapy are likely to
be optimum when it is delivered according to a formal written policy. 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.
Chemotherapeutic agents include other complex, systemic therapies such as biological
agents and cytokines. Chemotherapeutic agents are potentially dangerous and fatalities
have occurred due to the inappropriate administration of some chemotherapeutic
agents via the intrathecal route. It is therefore essential that chemotherapy is provided
by trained specialist staff in a safe environment with appropriate facilities. Teenagers
and young adults should be offered chemotherapy in age appropriate facilities in a
TYAC unit. Standardisation of protocols across the Cancer Network will enable outcome
assessment to be performed in a uniform manner and staff gain greater expertise by
concentrating on a lesser number of well-defined protocols.
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10.1 STANDARD There is an overarching Trust chemotherapy policy, compatible with the latest
guidance from NICE or JCCO, covering generic issues pertinent to chemotherapy:
a. Staff grading, training and competencies
b. Prescribing
c. Preparation and dispensing
d. Administration
e. Disposal of waste and spillage
MONITORING CRITERIA Documentation of the Trust chemotherapy policy detailing the following
a. Staff authorised to initiate chemotherapy.
b. Documentation of the on-site facilities for the preparation of chemotherapy and
of compliance with NHS standards for aseptic preparation.
c. Job description of designated pharmacist responsible for overseeing pharmacy
services to the ward/outpatient area where chemotherapy is administered.
d. Facilities for the administration of chemotherapy plus any dedicated areas for
administration of intrathecal and intraventricular chemotherapy if this is
undertaken. To include details of policies and equipment for the administration
of chemotherapy plus the management of emergencies such as anaphylaxis,
extravasation, spillage of cytotoxics and cardiac arrest.
e. Training and post-registration qualifications of chemotherapy nurses.
f. Confirmation that the Trust chemotherapy policy is available and complied with in
all areas where chemotherapy is administered.
10.2 STANDARD
Detailed written chemotherapy protocols, agreed with the NSMDT are used for the
management of patients with brain and other CNS tumours. These protocols
include:
a. Regimens and their indication
b. Drug doses and scheduling
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c. Pre- and post-treatment investigations
d. Dose modifications
MONITORING CRITERIA a) Detail of Trust chemotherapy protocols by cancer site.
b) Details of patient information leaflets.
10.3 STANDARD
Intrathecal/intraventricular chemotherapy is 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.
MONITORING CRITERIA Annual monitoring by All Wales Principal Pharmacist Quality Control.
10.4 STANDARD
Major morbidity following chemotherapy in patients treated with curative intent is
monitored.
MONITORING CRITERIA Detail audit of chemotherapy-related major morbidity for patients treated with
curative intent by cancer.
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OBJECTIVE 11: 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
Rationale: The palliative approach may be applicable at any stage of a patient's illness
and incorporates the particular needs of the dying patient. This is the responsibility of all
health professionals caring for those with progressive life-threatening disease, informed
by knowledge of palliative care principles and practice and supported by a specialist
palliative care team. Teenagers and young adults especially will have different needs
during the palliative phase and referral to the palliative care team with an interest in this
age group is paramount.
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11.1 STANDARD All health professionals engaged in caring for patients with brain and other CNS
tumours receive training to allow adequate assessment and delivery of general
palliative care.
MONITORING CRITERIA
Detail arrangements for staff education and training in palliative care principles and
practice.
11.2 STANDARD There are arrangements to access age appropriate specialist palliative care
services.
MONITORING CRITERIA
a. Details in MDT guidelines of access arrangements to specialist palliative care
as defined in the CSCG National Cancer Standards for Specialist Palliative
Care.
b. Percentage of teenagers and young adults referred to age appropriate palliative
care.
11.3 STANDARD
Palliative care needs are rapidly addressed, and specialist palliative care advice
available, in all settings 24 hours a day.
MONITORING CRITERIA
Community documentation of patient records of:
a. Responsibility for out-of-hours medical care.
b. Detail of access to nursing care if no 24 hour district nursing service available.
c. Trust and Cancer Network documentation on accessing out-of-hours palliative
care advice.
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11.4 STANDARD An integrated system is 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.
MONITORING CRITERIA
a. Detail in the MDT guidelines on use of the end of life care pathway.
b. Audit of patients on the All Wales Last Days of Life.
11.5 STANDARD All profession-specific teams engaged in palliative care provision such as nursing,
physiotherapy andoccupational therapy have at least one member who has
undergone post-registration education and training in palliative care.
MONITORING CRITERIA
Details of:
a. Availability of post registration education and training programmes.
b. Trust identification of staff training priorities in palliative care.
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APPENDIX 1 -Membership of the Cancer NSAG Brain and Other CNS Tumour Standards Group
• Professor Robert Mansel, Chair, Cancer National Specialist Advisory Groups (Chair) • Ms Nikki Andrews, Rare Cancer Information Specialist, North Wales Cancer
Network • Mr Andrew Brodbelt Consultant Neurosurgeon, The Walton Centre NHS Foundation
Trust, Liverpool • Mr Shafqat Bukhari, Consultant Neurosurgeon, University Hospital of Wales, Cardiff • Ms Sarah Flowers, Clinical Psychologist, St Woolos Hospital, Newport • Ms Claire Garman, Clinical Nurse Specialist, Velindre Cancer Centre, Cardiff • Mrs Eleri Girt, Patient Facilitator, South Wales Cancer Network • Mr Pablo Goetz, Consultant Neurosurgeon, University Hospital of Wales, Cardiff • Dr Jane Hanson, Head of Cancer National Specialist Advisory Group Core Team • Miss Caroline Hayhurst, Consultant Neurosurgeon, University Hospital of Wales,
Cardiff • Mr Richard Hayward, Palliative Care Representative • Ms Emily Hazel, Clinical Psychologist, St Woolos Hospital, Newport • Mr Damian Heron, Cancer Network Director, North Wales Cancer Network • Dr Alistair Lammie, Consultant Pathologist, University Hospital of Wales, Cardiff • Dr Andrea Liu, Consultant Radiologist, University Hospital of Wales, Cardiff • Ms Melanie Mills, Clinical Nurse Specialist, University Hospital of Wales, Cardiff • Dr Jim Neale, Neuropathologist, University Hospital of Wales, Cardiff • Ms Elaine Penaluna, Clinical Nurse Specialist, Singleton Hospital, Swansea • Dr Kath Rowley, Consultant Oncologist, Singleton Hospital, Swansea • Dr Vijay Sawlani, Consultant Neuroradiologist, Morriston Hospital, Swansea • Ms Maxine Simmonds, Therapy Radiographer, Velindre Cancer Centre, Cardiff • Professor Roger Taylor, Professor of Clinical Oncology, Singleton Hospital,
Swansea • Dr Owen Tilsley, Consultant Clinical Oncologist, Velindre Cancer Centre, Cardiff • Dr Heidi Traunecker, Consultant Paediatric Oncologist, University Hospital of Wales,
Cardiff • Dr Phillip Webb, Specialised Planner Cancer Services, Welsh Health Specialised
Services Committee • Ms Wendy Wilkinson, Occupational Therapist, Singleton Hospital, Swansea
Page 55
APPENDIX 2 - List of acronyms used in main document AHP Specialist Allied Health Professional Cancer NSAG National Specialist Advisory Group for Cancer CCLG Children's Cancer and Leukaemia Group CLC Cancer Lead Clinician CNS Central Nervous System DCC Direct Clinical Care DTI Diffusion Tensor imaging DWI Diffusion Weighted imaging EASR European Age Standardised Rate ENT Ear, Nose and Throat EQA External Quality Assessment IMRT Intensity Modulated Radiotherapy JCCO Joint Collegiate Council for Oncology LHB Local Health Boards MDT Multi Disciplinary Team MRS Magnetic Resonance Spectroscopy NICE National Institute for Health and Clinical Excellence NRAG Network Rehabilitation Advisory Group NSMDT Neuroscience Multi Disciplinary Team PCNSL Primary CNS Lymphomas PEDW Patient Episode Database for Wales PNET Primitive Neuroectodermal Tumours QART Quality Assurance in Radiotherapy SPA Supporting Professional Activities TYA MDT Teenage and Young Adult Multidisciplinary Team WCB Wales Cancer Bank WCISU Welsh Cancer Intelligence and Surveillance Unit WG Welsh Government
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APPENDIX 3 - Definitions and morphology codes
WHO classification
Description Morphology
C70 Malignant neoplasm of meninges
C70.0 Cerebral meninges C70.1 Spinal meninges C70.9 Meninges, unspecified
C71 Malignant neoplasm of brain
Excluding cranial nerves (C72.2-C72.5), retrobulbar tissue (C69.6) C71.0 Cerebrum, except lobes and ventricles,
including supratentorial NOS and corpus callosum
C71.1 Frontal lobe C71.2 Temporal lobe C71.3 Parietal lobe C71.4 Occipital lobe C71.5 Cerebral ventricle, excluding fourth
ventricle (C71.7) C71.6 Cerebellum C71.7 Brain stem, including fourth ventricle;
infratentorial NOS C71.8 Overlapping lesion of brain C71.9 Brain, unspecified
C72 Malignant neoplasm of spinal cord, cranial nerves and other parts of central nervous system
Excluding meninges (C70.-); peripheral nerves and autonomic nervous system (C47.-) C72.0 Spinal cord C72.1 Cauda equina C72.2 Olfactory nerve, including Olfactory
bulb C72.3 Optic nerve C72.4 Acoustic nerve C72.5 Other and unspecified cranial nerves,
including cranial nerve NOS C72.8 Overlapping lesion of brain and other
parts of central nervous system, including Malignant neoplasm of brain and other parts of central nervous system whose point of origin cannot be classified to any one of the categories C70-C72.5
C72.9 Central nervous system, unspecified, including nervous system NOS
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APPENDIX 4 - Diagnostic pathways and investigations (all suspected CNS tumours)36
36 Text in italics indicates recommended best practice waiting times in addition to the current mandated 31 and 62 day cancer waiting times.
1. If CT scan suggestive of CNS tumour further MR imaging to be arranged prior to referral (see Appendix 4) 2. Patients to be admitted to local hospital by referring GP where necessary 3. Tel. no. 02920 747747 bleep 6464 4. NeurosurgeryWales.com - in development 5. Fax no. 02920 742560
NEUROSURGERY
ONCOLOGY/ RADIOTHERAPY
PALLIATION
REHABILITATION
SURVEILLANCE
Referral within 1 working day of
NSMDT meeting
Referral within 1 working day of
NSMDT meeting
Referral within 1 working day of
post op NSMDT
NSMDT
INFO
RM
ATI
ON
D
ISSE
MIN
ATI
ON
1 week
UHW ON-CALL NEUROSURGICAL TEAM2 Telephone referral3 if urgent/emergency
with online referral form4 available to fax5 if not urgent/emergency
PRIMARY GP
SECONDARY Acute
Hospital Clinician
TERTIARY Neurologist Oncologist
Other Specialist
DIAGNOSTIC RADIOLOGY1
REFERRER
GP
CANCER NETWORK
REHABILITATION GROUP
PATIENT RELATIVES
With
in 5
wor
king
day
s of
N
SM
DT
mee
ting
With
in 2
wor
king
day
s of
NSM
DT
mee
ting
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APPENDIX 5 - Imaging Guidelines For Brain Tumours37,38 INTRODUCTION Imaging in patients with brain tumours occur in three clinical settings:
1. Part of the initial diagnostic workup
2. For surgical planning/navigation
3. Follow-up imaging
The choice of the initial imaging modality is largely dictated by local availability but in
general, an unenhanced CT scan is sufficient to exclude most intracranial mass lesions.
Exceptions include:
1. Suspected brain metastases (contrast enhanced CT or MRI required)
2. Vestibular schwannoma (high resolution axial MRI)
CT can provide unique information not readily available on MRI (e.g. the presence of
calcification).
In general terms, all patients with intracranial tumour will require MRI. Ideally, a post-
contrast T1-weighted sequence in addition to diagnostic post-contrast scans should be
performed for surgical guidance at the referring hospital.
INITIAL DIAGNOSTIC WORKUP When an initial CT or MRI examination demonstrates an intracranial mass, the imaging
protocol should be adapted to extract as much information as possible.
Unenhanced CT or MRI scan demonstrates an intraaxial, supratentorial mass: 1. Intravenous contrast material should be administered and post-contrast images
acquired.
37 Adapted from the Thames Valley Cancer Network Imaging Guidelines For Brain Tumours: http://www.tvcn.nhs.uk/protocols--guidelines/protocols/CNS/ 38 Reflecting the latest advice from the Royal College of Radiologists Guidance “Evidence-based indications for the use of PET-CT in the United Kingdom 2012”
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2. For lesions affecting midline structures (hypothalamus/chiasm region, pineal
region), sagittal T2 and contrast enhanced T1-weighted images is advised if MRI
is used.
3. In a patient with multiple ring-enhancing lesions or a solitary ring enhancing
lesion with clinical features suspicious for abscess, a DWI sequence on MRI
should be performed if possible since this has a role in excluding abscess.
4. If brain metastases are suspected, an age- and sex-appropriate imaging search
for the primary tumour is indicated.
Unenhanced CT or MRI scan demonstrates an intraaxial posterior fossa mass: 1. Intravenous contrast material should be administered and post contrast images
acquired.
2. Sagittal T2 and contrast enhanced T1-weighted images on MRI are useful in
demonstrating the extent of brains stem invasion.
3. In children, sagittal T1-weighted contrast enhanced MRI of the whole spine to
look for meningeal “drop” metastases should also be acquired before surgery
and this should be performed as part of the initial examination if this happens to
be an MRI scan (especially if examination is performed under general
anaesthesia).
Unenhanced CT or MRI scan demonstrates an extraaxial mass: 1. For anteriorly situated posterior fossa masses, e.g. cerebellopontine angle
lesions, high resolution T2-weighted axial imaging such as FIESTA or CISS is
indicated to demonstrate the relationship of the tumour to the cranial nerves.
2. In cases where there is doubt about whether a mass is truly extraaxial, post
contrast MRI with imaging in all three planes is advisable.
IMAGING PERFORMED FOR SURGICAL NAVIGATION AND PLANNING 1. The imaging protocols for surgical navigation is dictated by the navigation
equipment used in a specific case.
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a. At UHW, a frame-based stereotactic technique requiring a CT scan can be
used as well as non frame-based (optical tracking system) techniques which
require CT or MRI.
b. Contrast administration is considered if the initial imaging proves that it
improves lesion visibility.
2. Additional sequences that aid in surgical planning may need to be performed.
Theses will include CTA, CTV, MRA and MRV.
3. Advanced imaging including spectroscopy, perfusion imaging and DTI in selected
cases at the discretion of the neuroradiologist. Spectroscopy will usually be
required for low grade gliomas.
FOLLOW-UP IMAGING General principles
1. MRI is preferable to CT for cranial imaging due to the higher sensitivity in
demonstrating change.
2. CT is a reasonable alternative in emergency cases.
3. Contrast should be administered unless contraindicated, the exceptions are
vestibular schwannomas which do not generally need contrast administration on
MRI to be diagnosed.
4. Spectroscopy, perfusion imaging and DTI (on brain MRI) should be used when
the supervising neuroradiologist thinks that it may add useful information in a
particular case.
5. Vascular imaging (CTA, CTV, MRA and MRV) may add useful information in
selected cases but are not routinely performed.
Specific scan protocols Protocol 1: Intracranial tumours (other than those specified in protocols 2 – 4 below)
MRI All patients:
1. Axial T1 + T2 + DWI
2. Axial or Coronal FLAIR
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3. Coronal T2 if axial rather than coronal FLAIR obtained
4. Axial, coronal and sagittal T1 Post Gadolinium or T1 volume (e.g. FMSPGR)
with 3 plane reconstructions at 2mm slice thickness.
Selected cases at the discretion of the neuroradiologist:
1. MR spectroscopy
2. MR perfusion imaging
3. DTI
4. MRA
5. MRV
For lesions affecting midline structures (hypothalamus/chiasm region, pineal
region), sagittal T2 and contrast enhanced T1-weighted images is advised.
CT 1. Helical acquisition of the whole head pre- and post-contrast.
2. Axial, coronal and sagittal reconstructions at 5mm slice thickness of both the
pre and post contrast acquisition.
3. Include high resolution thin (1mm or 2mm) bone algorithm reconstructions for
tumours involving the cranial vault or skull base.
Protocol 2: Imaging of pituitary tumours
MRI All patients :
1. Axial T2 whole brain.
2. Sagittal and coronal high resolution (3mm slice thickness) T1 through
pituitary.
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Selected cases:
1. Sagittal and coronal high resolution (3mm slice thickness) T1 post Gadolinium
through pituitary in selected cases e.g. suspected Cushing’s disease.
2. Dynamic contrast enhanced T1 coronal images through pituitary in selected
cases where a pituitary microadenoma is strongly suspected but not seen on
standard imaging.
3. Post-contrast SPGR T1-weighted volume imaging through the pituitary gland.
CT (when MRI is contraindicated): 1. Helical acquisition of whole head with reconstruction in all three planes at
3mm slice thickness using a soft tissue reconstruction algorithm.
2. Use IV contrast at discretion of radiologist.
Protocol 3: Imaging of tumours that involve the skull base, orbits or paranasal sinuses
MRI All patients:
1. Axial high resolution (3mm slice thickness) T2 and T.
2. Coronal high resolution (3mm slice thickness) T1 and STIR.
3. Axial and coronal high resolution (3mm slice thickness) T1 post gadolinium.
Fat saturation is indicated when the orbits are involved and potentially for
other tumours as well (at discretion of radiologist).
Selected cases: (at discretion of radiologist)
1. DWI.
2. Axial T2 and/or FLAIR and/or whole brain T1 post gadolinium
CT (when MRI is contraindicated): 1. Helical acquisition of whole head with reconstruction in all three planes at
3mm slice thickness using a soft tissue reconstruction algorithm and at 1mm
slice thickness using a bone reconstruction algorithm.
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2. Use IV contrast at discretion of radiologist – it would usually be indicated.
3. CTA / CTV at discretion of radiologist
Protocol 4: Imaging for vestibular schwannoma
MRI Depending on scanner manufacturer, perform high resolution heavily axial T2
weighted images through IAMs (e.g. Balanced FFE, CISS or FIESTA)
CT (when MRI contraindicated) 1. Helical acquisition through the posterior fossa.
2. Reconstruction in axial and coronal planes at 3mm slice thickness using a
soft tissue reconstruction algorithm and at 1mm slice thickness using a bone
reconstruction algorithm.