cancer national specialist advisory group national

Cancer National Specialist Advisory Group National Standards for Cancer Services for Adults with Brain and Other CNS Tumours January 2014

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

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

http://guidance.nice.org.uk/CSGBraincns/Guidance/pdf/English

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

• 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)

http://howis.wales.nhs.uk/sites3/docopen.cfm?orgid=322&id=210595

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

• 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

http://publications.nice.org.uk/referral-guidelines-for-suspected-cancer-cg27

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

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.

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

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.

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.

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

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.

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:

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.

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).

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

http://www.welshlabour.org.uk/uploads/welsh-labour-manifesto.pdf

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.

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.

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.

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.

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

http://guidance.nice.org.uk/CSGBraincns/Guidance/pdf/English

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.

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.

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.

• 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).

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


• 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


• 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

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

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



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.

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.

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

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


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.

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.

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”.




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.

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.

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


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)

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.

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.

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.

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

http://ncat.nhs.uk/sites/default/files/Service%20Specification%20Stereotactic%20Cranial%20Radiotherapy_0.pdf

http://ncat.nhs.uk/sites/default/files/Service%20Specification%20Stereotactic%20Cranial%20Radiotherapy_0.pdf

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).

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.

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.

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.

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

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.

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.

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.

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.

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

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

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

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


NSMDT meeting


post op NSMDT

NSMDT

INFO

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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

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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”

http://www.tvcn.nhs.uk/protocols--guidelines/protocols/cns/

http://www.rcr.ac.uk/publications.aspx?PageID=310&PublicationID=363

http://www.rcr.ac.uk/publications.aspx?PageID=310&PublicationID=363

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.

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

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.

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.

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.

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