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Service
Brain Cancer Services
Commissioner Lead
Name
Provider Lead
Name Integrated Cancer System
Period
2012/2013
Date of Review
Annually
1. Purpose of Service
1.1 Aims and objectives of service
The overall aim of the service is “to improve cancer outcomes through seamlessly delivered
pathways, providing high quality care to patients with brain cancer throughout their journey”.
The service will have the following objectives:
 Enhance the management of patients within the system, and actively manage the
demand for secondary care and follow-up services ensuring patients have speedy
access to appropriate treatment.
 Reduce variation in access to and experience of care through consistent application
of best practice.
 Improve the patient experience.
 Provide clinical assessment and treatment within an Integrated Cancer System.
 Monitor and review agreed models of care and pathways for brain cancer patients
across the Integrated Cancer Systems.
1.2 Whole pathway commissioning
Improving cancer outcomes through seamlessly delivered pathways that run from prevention
through to end of life care remains an important vision for commissioning cancer. It is
important, therefore, that cancer site specific pathways are collaboratively commissioned and
delivered by providers working in partnership in an integrated system. This requirement is
covered in Schedule 20 of the NHS Contract.
The nature of the disease and its treatment means that there will be a plurality of providers.
This approach ensures that all parties, commissioners, service users and providers recognise
the whole patient pathway, the duty for partnership working and the need for seamless care
across organisational boundaries.
The ICS pathway groups will be responsible for managing the whole pathway, agreeing the
approach to delivering clinical best practice pathways, and providing clinical leadership to
coordinate delivery across the Integrated Cancer Systems.
2. Scope
The output specification includes tumours that start in the brain (primary tumours) and those
which occur as a result of cancer spread from other parts of the body such as the breast or
lung (secondary tumours). The pathway does not include extracerebral lesions, brain tumours
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in children, central nervous system (CNS) lymphomas, pineal tumours or the very rare brain
tumours. The service specification covers low grade tumours including meningiomas and
high grade tumours including malignant gliomas and covers the patient pathway from point of
referral to follow – up / end of life care.
The treatment of brain metastases are included in the best practice pathway description for
high grade tumours because 20-40% of all cancer patients develop brain metastases.
Providers will have in place co-morbidity assessment pathways to all relevant specialities that
demonstrate minimised pathway delay. Co-morbidity pathways are not covered in the service
specification.
3. Service description – Low grade brain tumours
3.1 Service model - general
The required service model is outlined in the clinically effective pathway on map of medicine.
In addition to this specification, there are a number of other criteria set out in NICE guidance
that must be met by any provider offering services for patients with brain tumours.
Different elements of the cancer treatment might be delivered on different provider sites.
Ref. Appendix 1 Commissioning best practice pathway for low grade brain tumours including
meningiomas.
Ref.1-3. Presentation and referral
Most primary tumours will be identified in primary care or through A&E.
Referral processes should follow the current NICE guidelines for brain cancer symptoms
ensuring that all patients with suspected brain cancer are seen within 14 days of the referral.
For patients with suspected brain cancer, treatment must commence within the 62 day
deadline specified in the cancer waiting time targets for an urgent referral. This is calculated
from the date of the decision to refer for assessment.
Ref.5. Diagnostic imaging
Magnetic resonance imaging (MRI) is the first line choice for all patients with suspected
brain tumours. In cases when a Computed tomography (CT) scan of the brain is also
required, this should be done with contrast.
There will be rapid access diagnostic clinics with access to MRI and CT. Such clinics could
be run under the care of neurologists.
Individual centres must have access to molecular neuropathology and sub-typing.
Ref.4,7. Outpatients appointments (nb. The majority of diagnoses are made as an
inpatient following emergency presentation)
Patients should attend two outpatient appointments pre-surgery unless further appointments
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are clinically required. Patients requiring more psychological support and reassurance may
warrant several pre-op outpatient appointments.
A holistic needs assessment must be undertaken whereby the patient will have an agreed,
written care plan, recorded by a named healthcare professional (or professionals), with a
copy sent to the GP and a personal copy given to the patient.
All patients should be offered prompt access to specialist psychological support / psychiatric
services. Referral to the rehabilitation MDT must be made within 1 week of diagnosis.
Neurologists will be have a central role in managing patients, both pre- and post-operatively.
Ref.6. Multidisciplinary team (MDT)
Multi-professional assessment is required and the core and extended specialist MDT
membership should include a full team of medical, nursing, rehabilitation, and psychology
experts.
ICSs will ensure that all MDTs are given a central role in coordinating patient care.
The MDT should record tumour grade and percentage of new patients entered into clinical
trials. The fitness of the patient and the presence or otherwise of co-morbidities is of far
greater importance when making treatment recommendations. The issues of patient fitness
and co-morbidities should become a routine part of the multidisciplinary team discussion.
The MDT should record disease grade, and correct this if necessary after repeat surgery
and pathological analysis of the specimen.
Providers should serve catchment populations of at least 2 million, with neuro-oncology
services located on these sites and strong links with local acute hospitals for referral.
Ref. 8-10. Surgery
50% of the named neuro-surgeon’s programmed activities should be neuro-oncology.
For both stereotactic guided biopsy and mini-craniotomies, when appropriate, intra-operative
histopathology will be used to inform whether the tumour has been adequately sampled to
avoid a second operation.
Specialist surgery service co-dependencies
The specialist surgical service for brain cancer must meet the optimal collocation
requirements, as set out in the cancer co-dependencies framework: Ophthalmology, clinical
psychology; paediatrics and young people; neurology; pathology; interventional radiology;
specialist imaging; ICU; HDU; CNS support; multidisciplinary rehabilitation; and dietetics.
Given the rarity of brain cancer, research infrastructure to enable entry of patients into
clinical trials is required.
There are a number of additional desirable service collocation requirements for the specialist
surgical service and the ICS will agree service configuration and location with
commissioners.
Ref. 11a-b, 12a-b. Adjuvant treatment
Ref. section 4. High grade gliomas
Ref 13-15. Follow-up, survivorship, end of life care
Providers will participate in the Inpatient Management Programme outlined in the Cancer
Reform Strategy. This includes access to enhanced recovery programmes, reduced length
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of stay for surgery, and initiatives to reduce follow up in acute settings.
With the emerging national guidance cancer care pathways must include new models of
long term follow up and survivorship care. The supportive and palliative care IOG, and
NCAT rehabilitation measures (2008) will be implemented in London. All patients must be
offered a range of supportive care including psychosocial support and individualised patient
information.
There is a shortage of neuro-psychologists nationally: this expertise should be present at
neuroscience centres.
The ICS will ensure integrated delivery of rehabilitation by hospital and community
therapists. Collaboration between health and social care is also required to develop
appropriate placements for those people who need ongoing institutional care. Where local
patients have had an operation on their tumour at a tertiary centre, they should have the
option of return to their local acute hospital for elements of their rehabilitation, where this
makes clinical sense.
Referral to neuro-rehabilitation must be made within 1 week of diagnosis. Rapid access to
appropriate levels of neuro-rehabilitation is required for those patients with palliative care
needs and those with shorter prognosis tumours.
Where appropriate, and in line with national guidance, all patients will have access to End of
Life Care Services. All pathways and specifications will be assumed to link to the separate
pathway and specification for End of Life Care.
4. Service description – High grade gliomas
Ref. Appendix 2 Commissioning best practice pathway for high grade gliomas
All service structure elements described for low grade brain tumours and relevant to the high
grade glioma pathway must be followed. In addition:
- A clinical summary from the diagnosing clinician should be received by the
neuroscience MDT without delay (within 2 days of the imaging report).
- Individual centres, as a baseline, must have the ability for MGMT marker and 1p 19q
analysis. Newer markers (such as EGFR receptor markers) may be required as
targeted agents become clinically useful.
- Adjuvant radiotherapy (or in fewer cases concurrent radiotherapy and chemotherapy)
must commence as soon as clinically possible within 31 days of completion of
surgery.
- Centres should have all the appropriate radiological investigations available at the
relevant stages of the pathway. Access to stereotactic radiotherapy facilities
consisting of either linac-based stereotactic, gammaknife, or cyberknife facilities.
50% of the named radiologists programmed activities should be neuro-radiology.
- For cerebal metastases (Ap.2.ref.17), investigations for the primary malignancy, if
unknown, should be chest x-ray, CT scan of the thorax, abdomen, and pelvis, and /
or Whole body FDG-PET.
- For cerebal metastases (Ap.2.ref.17), treatment options include one or a combination
of stereotactic radiosurgery (SRS), whole brain radiotherapy (WBRT), surgical
resection, and hormone therapy.
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5. Quality Requirements
2.1 Service Description
There are a number of criteria that must be met by any provider offering services for brain
cancer patients ensuring high quality cost effective care and in accordance with NICE
Guidance.
1.1. There must be an established weekly MDT meeting, where all patients have their
treatment and care agreed, including any significant change to the treatment plan.
MDTs will consider each patient for the potential of entry into clinical trials.
1.2. Providers will formally adopt the agreed best practice clinical pathway and the
underlying clinical guidelines within their organisations’ clinical governance process.
These pathways will represent the key elements of the service being commissioned
and, together with guidelines and protocols, demonstrate the quality required.
1.3. All patients will have a named key worker to provide support at each stage of the
pathway.
1.4. Each patient must have their holistic needs assessed at key stages of the pathway
including survivorship and/or end of life care with formal care plans developed that
are communicated to all teams/professionals involved in the patient’s care and
shared with the patient (who will be free to share this with their carers/family)
1.5. The service must meet all current national quality standards, the recommendations
set out in the cancer model of care, and the relevant NICE Improving Outcome
Guidance. The service must be fully compliant with peer review measures.
6. Key Service Outcomes
The key service outcome of this service specification is to “deliver high quality clinical
services for patients with brain cancer, following the agreed best practice brain cancer
pathway to ensure cancer survival rates in London are equal to or better than the best rates in
Europe”.
Any patient presenting with brain cancer will be placed on an agreed clinical pathway, to
receive the most appropriate care for their condition. The implementation of these pathways
will not only provide the best possible outcomes for the patients, but also allow NHS London
to use resources effectively within the health economy.
The key performance and quality indicators are listed below:
Pathway
→
Measure
Percentage patients seen within 2
weeks for urgent ef rral
Percentage patients treated within 31
days (from diagnosis to treatment)
Percentage patients treated within 62
days from urgent referral
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Data source
CWT
Reporting
Quarterly
Benchmark
tbc
CWT
Quar erly
100%
CWT
Quarterly
100%
MDT
→
Surgery
Radiotherapy
Chemotherapy
Follow up
Survivorship
System
Number of new cases seen by MDT
per annum
Percentage patients entered into
clinical trials
Patient findsit easy to contact their
CNS / keyworker
Survival 30 days after surgery
Trust data
Annual
tbc
NCRN
Annual
tbc
NCPES
Annual
100%
HES & ONS
Quarterly
tbc
Percentage patients who undergo
elective v emergency surgery
Percentage of pts undergoing
maximal or gross total resection as
opposed to biopsy or partial
resections
Percentage of patients receiving
radiotherapy delivered within 45
minutes of home
Percentage of patients receiving
IMRT
Door to needle for neutropenic sepsis
Trust data/
HES
Trust data
Annual
tbc
Annual
tbc
HES
Annual
tbc
HES
Quarterly
tbc
Trust data
Quarterly
tbc
Percentage patients undergoing
holistic needs assessment
1 year survival by stage
5 year survival by stage
10 year survival by stage
Percentage patients and carers given
clear and understandable written and
verbal information at relevant stages
of the pathway
Patients reporting always being
treated with respect and dignity
Trust data
Quarterly
tbc
Trust data
TCR
TCR
CMC
Annual
Annual
Annual
Annual
tbc
tbc
tbc
100%
NCPES
Annual
100%
7. Service structure – Informatics requirements
Recording and collection of high quality data is essential to commissioners and providers. It
allows the quality of care to be assessed and determines the improvements required.
The providers within the Integrated Cancer Systems will provide agreed performance
monitoring data against the metrics below on a quarterly basis. Where any elements of this
deviate from the agreed plan, the service will provide a brief explanation accompanying the
submission of the report.
The provider shall ensure that standards of performance are routinely monitored and that
remedial action is promptly taken where these standards are not attained.
Providers, and their MDTs, will collect and submit data in line with both national and locally
agreed requirements and as per the requirements of Section 29 and Schedule 5 of the NHS
Contract.
In 2012/13 ICSs will be required to ensure the data collection systems and protocols are in
place to provide the following information to commissioners:
 Informing commissioners for new patients:
o the date a patient is diagnosed with brain cancer
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o
o
the tumour grade at diagnosis
their NHS number or an agreed pseudonymised alternative.

Informing commissioners for existing patients:
o the date the tumour grade is diagnosed as having changed
o the new tumour grade.

Informing commissioners for all patients:
o the date a MDT ceases to have overall responsibility for the care of the
patient
o the reason for this (e.g. death/move away/patient chooses to stop having
treatment etc).

In addition:

Providers within the ICS will complete the Cancer Registration Dataset
(CRDS) for all patients.

Providers within the ICS will submit the CRDS to the Thames Cancer
Registry, commissioners and local cancer network quarterly seven weeks
after the quarter end.

MDTs will be responsible for the completeness, quality and timeliness of
data.
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Appendix 1 Commissioning best practice pathway for low grade brain tumours including meningiomas.
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Appendix 2 Commissioning best practice pathway for high grade gliomas
Grade 3
9. Debulking/partial
resection
14a. Radical
radiotherapy
±
10. Biopsy
14b. Chemotherapy
inpatient diagnosis
6. Emergency
decompression
/ shunt
insertion
1. A & E
7.
Neuroscience
MDT
5. Diagnostic
imaging
2. GP (direct
access)
3. Internal
referral
10a. Stereotactic
guided biopsy (for
deep lesions)
10b. mini-craniotomy
and open biopsy (for
superficial lesions)
5a. MRI brain
±
±
10c.* intraoperative
histopathology
Week ly MDT
13. OPA:
Oncology
14c. Palliative
radiotherapy
15a. Chemoradiation
5b. CT brain
with contrast
Cognitive
rehabilitation
20. EoL
Physical therapy
15b. Palliative
radiotherapy
12. Carmustine
implants
outpatient diagnosis
ref. 5.
Diagnostic
imaging
ref. 7
Neuroscience
MDT
Vocational therapy
Speech therapy
±
4. 1st OPA:
Neurology
18*. Follow-up
Grade 4
11. Maximal surgical
resection
ref. 2 GP / other
19. Palliative
care
8. 2nd OPA:
Neurology results
PNET Adult
medulloblastoma
16. Cranio-spinal
Radiotherapy
±
10c* Intra-operative histology can inform whether the tumour has been adequately sampled
Treatment of cerebal metastases
18.* Some patients may be candidates for further treatment (ref.9-16) if they are doing well after a period of follow-up / surveillence
17. Investigations
for primary
malignancy if
unknown
17a. Stereotactic
radiosurgery (SRS)
Chest X-Ray
±
CT scan of
thorax/abdomen/pelvi
s
Whole body FDGPET
17b. Surgical
resection of brain
metastases
±
17c. Whole brain
radiotherapy
(WBRT)
±
17d. Hormone
therapy
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21.
Survivorship