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South West Strategic Clinical Network Somerset, Wiltshire, Avon and Gloucestershire Cancer Services
Version 1.0 SWAG CUP SSG
Constitution
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Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer
Services
Cancer of Unknown Primary (CUP) Network Site Specific Group
Constitution
June 2015
Revision due: April 2016
South West Strategic Clinical Network Somerset, Wiltshire, Avon and Gloucestershire Cancer Services
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Constitution
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VERSION CONTROL
THIS IS A CONTROLLED DOCUMENT. PLEASE DESTROY ALL PREVIOUS VERSIONS ON RECEIPT
OF A NEW VERSION.
Please check the SWSCN website for the latest version available here.
VERSION DATE ISSUED SUMMARY OF CHANGE OWNER’S NAME
Draft 0.1 30th June 2015 First draft SWAG CUP SSG
1.0 30th June 2015 Finalised SWAG CUP SSG
South West Strategic Clinical Network Somerset, Wiltshire, Avon and Gloucestershire Cancer Services
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Constitution
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This constitution was prepared by:
Tania Tillett, Chair of the SWAG CUP SSG, Consultant Medical Oncologist, Royal United
Hospital Bath NHS Foundation Trust
Helen Dunderdale, SWAG Cancer Network SSG Support Manager
This constitution has been agreed by:
Name Position Trust Date agreed
Matthew Sephton Consultant Medical Oncologist
Yeovil District Hospital NHS Foundation Trust (YDH)
June 2015
Saiqa Spensley
Consultant Clinical Oncologist
Taunton and Somerset NHS Foundation Trust (TST)
June 2015
David Farrugia
Consultant Medical Oncologist
Gloucestershire Hospitals NHS Foundation Trust (GLOS)
June 2015
Thomas Wells
Consultant Medical Oncologist
Weston Area NHS Health Trust (WAHT)
June 2015
Paola Di Nardo
Consultant Medical Oncologist
University Hospitals Bristol NHS Foundation Trust (UH Bristol)
June 2015
Vivek Mohan
Consultant Medical Oncologist
University Hospitals Bristol NHS Foundation Trust (UH Bristol)
June 2015
Anna Kuchel Consultant Medical Oncologist
University Hospitals Bristol NHS Foundation Trust (UH Bristol)
June 2015
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CUP NSSG Constitution Contents
Section Contents Measures Page
1 Statement of Purpose 5
2 Structure and Function
6
2.1 Network Configuration 14-1C-101m 6
2.2 Network Group Membership 14-1C-102m 15
2.3 Network Group Meetings 14-1C-103m 16
2.4 Work Programme and Annual Report
14-1C-104m 16
3 Coordination of Care /
Patient Pathways
16
3.1 Clinical Guidelines 14-1C-105m 16
3.2 Network CUP Guidelines and Algorithms on the Systemic Therapy of Treatable Syndromes
14-1C-106m 16
3.3 Patient Pathways 14-1C-107m 17
3.4 Patient Pathways for TYA
3.5 Patient Investigation and Management Policy
14-1C-108m 17
4 Patient and Public Involvement
17
4.1 User Involvement 18
4.2 Patient Experience 14-1C-109m 19
4.3 Charity Involvement 19
5 Clinical Governance
19
5.1 Clinical Outcomes / Indicators and Audits
14-1C-110m 19
5.2 Data collection
19
6 Clinical Research
19
6.1 Discussion of Clinical Trials 14-1C-111m 19
7 Service Development 20
7.1 Education 20
7.2 Sharing Best Practice 20
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8 Funding
20
8.1 Clinical Commissioning Groups 20
8.2 Industry 21
9 Appendices
22
9.1 Appendix 1: Template Agenda 22
9.2 Appendix 2: SWAG User Involvement Brief
24
9.3 Appendix 3: Charity Involvement Brief
24
1. Statement of Purpose
The Somerset, Wiltshire, Avon and Gloucestershire Cancer Network CUP Site Specific Group
(NSSG) endeavours to deliver equity of access to the best medical practice for our patient
population. The essential priorities of the NSSG are to provide a service that is safe, high
quality, efficient and promotes positive patient experiences.
To ensure that this statement of purpose is actively supported, the consensually agreed
constitution will demonstrate the following:
The structure and function of the service is conducted, wherever possible, in
accordance with the most up to date recommended best practice, as specified in the
Manual of Cancer Services, CUP Measures1
An NSSG consisting of multidisciplinary professionals from across the Somerset,
Wiltshire, Avon and Gloucestershire cancer services has been established and meets
on a regular basis
Network wide systems and care pathways for providing coordinated care to
individual patients are in place. This includes the process by which network groups
link to individual MDTs
1 Manual for Cancer Services
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A process for ensuring that the NSSG clinical decision making is in accordance with
the most up to date NICE Quality Standards2 (December 2014) is in place, as are local
clinical guidelines that support the standards
There is a process by which patients and carers can evaluate and influence service
improvements that supports the principle ‘No decision about me without me’3
Internal and externally driven routine risk related clinical governance processes are in
place for evaluating services across the network, and identifying priorities for
improvement
The NSSG have a coordinated approach to ensure that, wherever possible, clinical
research trials are accessible to all eligible cancer patients
Examples of best practice are sought out and brought to the NSSG to inform service
development
Educational opportunities that consolidate current practice and introduce the most
up to date practices are offered whenever resources allow
Processes that can influence the funding decisions of commissioners across the
network are being developed.
2. STRUCTURE AND FUNCTION
The Multi-Disciplinary Teams (MDTs) within the CUP NSSG consist of consultant clinical and
medical oncologists, pathologists, imaging specialists and other health care professionals.
They meet regularly to discuss and manage each individual patient’s care.
2.1 Network Configuration (measure 14-1C-101m)
The SWAG CUP NSSG complies with Peer Review ground rules for networking by meeting
the following criteria:
3 Improving Outcomes – A Strategy for Cancer (2011)
3 NICE guidelines
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The SWAG CUP network group is the only network group for the CUP MDTs
associated with it
All hospitals in the network are associated with a CUP MDT
Relevant hospitals are associated with only one named CUP MDT
The CUP MDTs within the network are the only MDT with this role in its host
hospital
The CUP MDTs are associated solely with the SWAG CUP NSSG
The SWAG CUP NSSG Multi-Disciplinary Teams
Trust CUP MDT CUP MDT Day / Time
MDT referral deadline
Lead clinician to contact for advice
Royal United Hospital Bath NHS Foundation Trust (RUH)
RUH Thursday 10:30 – 11:30
Tuesday 09:30
Tania Tillett 01225 825 207
Taunton and Somerset NHS Foundation Trust (TST)
TST Thursday 08:30 – 09:30
No specific deadline
Saiqa Spensley [email protected] (MDT Coordinator – Emma Pugh)
Yeovil District Hospital NHS Foundation Trust (YDH)
YDH Tuesday 13:00 – 14:00
Monday 12:00
Matthew Sephton, 01935 384869
Weston Area Health NHS Trust (WAHT)
UH Bristol Thursday morning 8.30
Tuesday 08:00
Thomas Wells, 01934636363, ext. 3990
North Bristol NHS Trust UH Bristol Thursday morning 8.30
Tuesday 08:00
Anna Kuchel [email protected]
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Referral processes:
Royal United Hospital Bath NHS Foundation Trust (RUH)
Primary care referral:
2WW referral system operational
Referral from cancer site specific MDT:
Patient Name
Hospital ID
DOB
Contact Telephone Number
Source of Initial Referral Date
Initial Referring Investigation Date
Presenting Symptoms
Performance Status Date
CT Staging (Chest Abdo Pelvis) Date
University Hospitals Bristol NHS Foundation Trust (UH Bristol)
UH Bristol Thursday morning 8.30
Tuesday 08:00
Anna Kuchel
Gloucestershire Hospitals NHS Trust (Glos)
Glos CUP service is currently in set-up.
To be confirmed
To be confirmed
David Farrugia
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MRI Scan (as needed) Date
Routine Bloods Taken (FBC, U+E, LFT, Ca, LDH) Date
Relevant Tumour Markers* Date
Myeloma Screen ** Date
Endoscopy (if relevant) Date
Biopsy Site Date
Other Date
CUP MDM Date
CUP MDM Outcome
Initial Oncology OPA Cons Date
Definitive Oncology OPA Cons Date
Confirmed Diagnosis
Treatment Plan
KEY
Tumour Markers* PSA – men with primarily bone disease Ca125 – women with peritoneal malignancy or ascites AFP and HCG – men with midline nodal disease AFP – suspected primary liver cancer CEA – suspected colorectal cancer or liver only metastatsis Ca19.9 – suspected UGI/HPB cancers Ca15.3 – suspected Breast Cancers
Myeloma Screen** Serum Free Light Chains Bence-Jones Protein Skeletal Survey (if not had CT CAP)
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Taunton and Somerset NHS Foundation Trust (TST)
Primary Care referral:
To be confirmed
Referral from cancer site specific MDT:
To be confirmed
Yeovil District Hospital NHS Foundation Trust (YDH)
Primary Care referral:
To be confirmed
Referral from cancer site specific MDT:
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Malignancy of Unknown Origin (MUO) Assessment Form
Please complete for each patient referred from Primary Care or as an inpatient
Patient Name
Hospital Number
DOB
Contact telephone number
Source of Initial Referral Date
Initial Referring Investigation Date
Presenting Symptoms
Performance Status Date
CT Chest/Abdo/Pelvis Date
MRI scan (if needed) Date
Routine Bloods Tests (FBC, U&Es, LFTs, Ca2+, LDH) Date
Relevant Tumour Markers
Date
Myeloma Screen Date
Endoscopy (if relevant)
Date
Biopsy Site Date
Other Date
CUP MDT Date
CUP MDT Outcome
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Malignancy of Unknown Origin (MUO) Assessment Form
Initial Oncology OPA Dr Date
Definitive Oncology OPA Dr Date
Confirmed Diagnosis
Treatment Plan
Date
Notes
University Hospital Bristol NHS Foundation Trust (UH Bristol)
Primary Care referral
To be confirmed
Referral from cancer site specific MDT
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University Hospitals Bristol NHS Foundation Trust CANCER OF UNKNOWN PRIMARY
MDT Request Form
Date of MDT Consultant
Patient Name Referred by
DOB Referrers contact number
Patients’ location Date of Referral to CUP team
NHS No. How was patient referred to BRI
Hospital No. Referral date to BRI
Performance Status (see 2nd page for guidance)
Key worker
History and presenting symptoms
Investigation Date of investigation Place of investigation Radiology - Specify
Tumour Markers
Biopsy
Cytology
Current issue for MDT discussion:
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Guidance Notes
Referrals:
Requests for MDT discussion should be made by email to the CUP Team email address by 8am on a Tuesday, prior to MDT discussion on Thursday. Please send with any attachments that you may think the MDT will find useful, e.g. referral letters. The email address is [email protected]
Contact: [email protected] Tel: 0117 3421294
Performance Status (WHO Scale)
WHO Grade Assessment 0 Able to carry out all normal activities without restriction
1 Restricted in physically strenuous activity but ambulatory and able to carry out light work
2 Ambulatory and capable of all self-care but unable to carry out any work: up and about more than 50% of waking hours
3 Capable of only limited self-care: confined to bed or chair more than 50% of waking hours
4 Completely disabled: cannot carry out any self-care: totally confined to bed or chair
Gloucestershire Hospitals NHS Trust (Glos)
Primary Care referral
To be confirmed
Referral from cancer site specific MDT
To be confirmed
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2.2 Network Group Membership (measure 14-1C-102m)
All participants at MDTs are welcome to attend the SSG meetings.
The SWAG CUP NSSG consists of the following core members:
Name Position Trust
Alfredo Addeo Consultant Medical Oncologist UHB
Anna Kuchel Consultant Medical Oncologist UHB
Tania Tillett Consultant Medical Oncologist RUH
Thomas Wells Consultant Medical Oncologist WAHT
Vivek Mohan Consultant Medical Oncologist UHB
David Farrugia Consultant Medical Oncologist GLOS
Matthew Sephton Consultant Medical Oncologist YDH
Paola Di Nardo Consultant Medical Oncologist UHB
Saiqa Spensley Consultant Clinical Oncologist TST
Robert Pitcher Consultant Pathologist UHB
David Wilson Consultant Radiologist UHB
Colette Reid Consultant Palliative Care UHB
Rachel Royston Consultant Palliative Care NBT
Colin Binks Oncology Specialist Doctor GLOS
Bernadette Panes CUP Clinical Nurse Specialist RUH
Julia Hardwick CUP Clinical Nurse Specialist UHB
Michelle Samson CUP Clinical Nurse Specialist NBT
Samantha Wells CUP Clinical Nurse Specialist UHB
Sarah Colsey CUP Clinical Nurse Specialist NBT
Sarah Maton CUP Clinical Nurse Specialist GLOS
Suriya Kirkpatrick CUP Clinical Nurse Specialist NBT
Laura Pope Upper GI Clinical Nurse Specialist TST
Justine Lloyd Acute Oncology ANP GLOS
Janette Tucker CUP MDT Coordinator UHB
Kerry Youe CUP MDT Coordinator YDH
Carol Chapman Lead Nurse Oncology NBT
Corrine Thomas Lead Nurse Oncology WAHT
Maxine Taylor Senior Research Delivery Manager West of England CRN
Helen Dunderdale Cancer Network SSG Support Manager SWCNS
Samantha Larsen Cancer Network SSG Support Administrator SWCNS
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2.3 Network Group Meetings (measure 14-1C-103m)
The SWAG SSG will meet twice yearly. Agendas, notes and actions, and attendance records
will be uploaded onto the South West Strategic Clinical Network website:
www.swscn.org.uk
Appendix 1 is the template agenda for the CUP NSSG meetings, which is circulated prior to
each meeting to ensure that all members are aware of who is required to attend and that all
subject matters requiring discussion are identified.
Terms of reference are agreed in accordance with the paper Recurrent Arrangements for
Cancer Network Clinical Groups and Responsibilities for Peer Review, as proposed by the
South West Strategic Clinical Network (SCRN) Cancer Network Manager, Jonathan Miller
(14th July 2014).
The NSSG meetings are also conducted in line with the Manual for Cancer Services, CUP
Measures (Version1.1).
2.4 Work Programme and Annual Report (measure 14-1C-104m)
The SWAG NSSG will produce a Work Programme and Annual Report in discussion with the
South West Strategic Clinical Network (SWSCN).
3. COORDINATION OF CARE / PATIENT PATHWAYS
3.1 Clinical Guidelines (measure 14-1C-105m)
The NSSG refers to the NICE Guidelines for clinical management of CUP cancer. Further
details of the local provision of the guidelines are within the separate document as above.
This is reviewed annually to ensure that any amendments to imaging, surgery, pathology,
chemotherapy and radiotherapy practices are up to date.
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3.2 Network CUP Guidelines and Algorithms on the Systemic Therapy of Treatable
Syndromes (measure 14-1C-106m)
The NSSG plans to agree network wide guidelines, including chemotherapy treatment
algorithms, in consultation with the CUP MDT leads and the SSG Chair, for the following
treatable syndromes:
Poorly differentiated carcinoma with a midline distribution
Women with predominantly peritoneal adenocarcinoma
Women with adenocarcinoma involving the axillary lymph nodes
Squamous cell carcinoma of lymph nodes in the neck
Poorly differentiated neuroendocrine carcinoma.
Patients will be offered the opportunity to enter clinical trials whenever applicable.
The protocols will be distributed to the relevant cancer site-specific MDTs in the network.
3.3 Patient Pathways (measures 14-1C-107m)
The SWAG network site specific groups refer any patient with metastatic carcinoma of
unknown origin for discussion with the specialist carcinoma of unknown primary (CUP)
MDTs. The CUP MDT is a tertiary referral point once initial investigations have been
undertaken by the site specific MDTs.
Important Definitions:
Malignancy of undefined primary origin (MUO): this is metastatic malignancy identified after a limited number of tests, without an obvious primary site.
Provisional carcinoma of unknown primary (CUP): metastatic epithelial or neuro-endocrine malignancy on the basis of biopsy, with no primary site identified, despite initial investigations and before specialist review.
Confirmed CUP: as above, after specialist review and appropriate specialised investigations.
Patients referred to the CUP MDT will have usually undergone a CT of the chest, abdomen
and pelvis.
Patients who are unfit for treatment (or who opt against investigation) who have had partial
imaging will be discussed to advise on the merits of further investigation.
The SWAG CUP NSSG follows the patient pathways as recommended in the NICE Guidelines
here.
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3.4 Patient Pathways for Teenagers and Young Adults (TYA)
Details of TYA patient pathways for the SWAG NSSGs can be found on the SWSCN website:
TYA
3.5 Patient Investigation and Management Policy (measure 14-1C-108m)
The network group agree to the following network wide policy, which underpins the
ongoing investigation and subsequent management of all patients presenting as cases of
MUO.
Continuing investigations to find the primary should only be carried out if:
The patient is fit for treatment if the primary were found
The results are likely to affect a treatment decision
The patient understands why the investigations are being performed and the
potential risk and benefits of investigation and treatment
The patient is prepared to accept eventual treatment.
Confirmed CUP Patients without a specific ‘treatable syndrome’ (measure 14-1C-106m) who
are being considered for chemotherapy should:
Have the balance between potential risks and benefits discussed with them
If it is decided to proceed with chemotherapy, be offered entry into a clinical trial if
available
That confirmed CUP Patients with a ‘treatable syndrome’ and fit for treatment,
should be offered chemotherapy according to the network guidelines for the
management of treatable syndromes (measure 14-1C-106m).
This policy will be distributed to the relevant hospitals and cancer site specific MDTs in the
network.
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4. PATIENT AND PUBLIC INVOLVEMENT
4.1 User involvement
The NHS employed member of the NSSG nominated as having specific responsibility for
users’ issues and information for patients and carers is the Cancer Network SSG Support
Manager. The NSSG actively seeks to recruit user representatives. Appendix 2 contains the
user involvement brief that is circulated for this purpose.
4.2 Patient Experience (measure 14-1C-109m)
The results and actions generated from the National Patient Experience Survey within each
Trust in the NSSG will be reviewed in every NSSG meeting, and the progress of the agreed
improvement programme monitored. Progress will published in the Annual Report.
4.3 Charity involvement
See Appendix 3
5. CLINICAL GOVERNANCE
5.1 Clinical Outcomes, Indicators and Audits (measure 14-1C- 110m)
The NSSG regularly review the data from each MDT’s clinical outcomes, quality indicators
and audits. At least one network audit will be performed each year. The results of this are
presented at the NSSG meetings and distributed electronically to the group.
5.2 Data Collection
Patient data on diagnostics is uploaded to the Somerset cancer registry as part of a National
initiative.
6. CLINICAL RESEARCH
6.1 Discussion of Clinical Trials (measure 14-1C-111m)
Members of the NSSG discuss each MDT’s report on clinical research trials within every SSG meeting. A list of all of the open trials on the CUP NIHR portfolio, and potential new trials is
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brought to each SSG meeting by the West of England Clinical Research Network (CRN) Cancer Research Delivery Manager. Due to the CRNs mapping with the Academic Health Science Networks, Taunton and Yeovil are in South West Peninsula CRN. The Cancer Research Delivery Manager from the Peninsula CRN will provide the NSSG with the data for these Trusts. Information on clinical trial recruitment will be published in the NSSG Annual Report. Potential new trials to open and actions to improve recruitment will be documented in the NSSG Work Programme. The trials available in each Trust will be updated on the South West Strategic Clinical Network website at regular intervals so that the NSSG members can ensure, wherever possible, that clinical research trials are accessible to all eligible CUP oncology patients. The NHS staff member nominated as the research lead for the NSSG is Matthew Sephton.
7. SERVICE DEVELOPMENT
Regular reviews of major service developments and changes in treatment pathways are
conducted at the SSG meetings.
Regular reviews of Chemotherapy protocols is conducted by the NSSG.
7.1 Education
The NSSG meetings will have an educational function. Continuous Professional
Development (CPD) accreditation for meetings with multiple educational presentations will
be sought by application to the Royal College of Physicians. This will involve uploading
presentations and speaker profiles to the CPD approvals online application database. The
approvals process takes approximately six weeks, and can be applied for retrospectively.
The NSSG members will be required to complete a Royal College of Physician’s CPD
evaluation form. Certificates of the CPD points that are allocated to the meeting will be
distributed to the NSSG members.
7.2 Sharing Best Practice
Where best practice in CUP oncology services outside the SWAG NSSG has been identified,
information on the function of these services will be gathered to provide a comparison and
inform service improvements. Guest speakers from the identified services will be invited to
provide a presentation at the NSSG meetings.
Where best practice in CUP oncology services within the SWAG NSSG has been identified,
information on the function of SWAG services will be disseminated to the other cancer
networks.
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8. FUNDING
8.1 Clinical Commissioning Groups
In the event that an insufficiency in the CUP oncology services relating to funding is
identified, the NSSG will gather evidence of the insufficiency via audit and research,
together with feedback about how the provider Trusts have tried to address them. The
consequences of the insufficiencies for patients will be listed so that all key issues are
documented and the required actions made clear. This information will then be fed back to
the Cancer Network Manager for the South West Strategic Clinical Network, who will
present the evidence to the CCG clinical effectiveness group.
8.2 Industry
The Government’s paper Improving Outcomes: A Strategy for Cancer states that ‘working together with other organisations and individuals, we can make an even bigger difference in the fight against cancer’. The NSSG will forge relationships with pharmaceutical companies to seek commercial sponsorship for the meetings in order to make savings that can be fed back into the NSSG cancer services. The NSSG Support Manager will comply with the various rules and regulations pertaining to the pharmaceutical companies’ policies and with the NHS rules and regulations as follows:
Completion of a register of interest form with the NSSG support service host Trust, University Hospitals Bristol NHS Foundation Trust
Declaration of any sponsorship offers
Confirm with all sponsors that the arrangements would have no effect on purchasing
decisions
Ensure that all pharmaceutical companies entering into sponsorship agreements comply with the Code of Practice for the Pharmaceutical Industry (Second Edition) 2012
Obtain advice from the Medical Director or Chief Pharmacist for sponsorship agreements in excess of £500.00
Ensure that where a meeting is funded by the pharmaceutical industry, that this is documented on all papers relating to the meetings
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Ensure that the receipt of funding is approved by an Executive Director and recorded in the Register of Gifts, Hospitality and Sponsorship in advance
Scrutinise contracts with the assistance of Financial Services prior to providing a signature.
9. APPENDICES
9.1 Appendix 1
Template Agenda
Network group membership to attend
Chair, MDT Lead Clinicians, MDT nurse core member, Clinical oncologist, Medical oncologist,
Imaging specialist, Histopathologist, Consultant in Palliative Medicine, User representative 1
User representative 2, Administrative support
Chair to name nominated network group member responsible for users’ issues and
information for patients / carers
Chair to name nominated network group member responsible for clinical trial
recruitment function
Template Agenda
1. Review of last meeting minutes:
2. Clinical opinion on network issues:
Review of MDT membership changes / service
3. Clinical guidelines:
Review if any amendments to imaging, pathology, chemotherapy, radiotherapy, surgical
practices
Version control process
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4. Coordination of patient care pathways:
Review hospital referral processes for TYA / varying indications / investigations and
follow up
Review implementation of primary care referral pro forma
Breach example to discuss
5. Patient experience:
User representative input
Review patient experience survey / identified actions
QOL surveys
Patient information
CNS / keyworker support
6. Quality indicators, audits and data collection:
Current audits / audit outcomes
Audits in the pipeline
Data collection issues
7. Research:
Current clinical trials / recruitment / actions to improve recruitment
Clinical trials in the pipe line
8. Service development:
Early diagnosis
Training opportunities available
Sharing best practice
Innovation
Awareness campaigns
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9. Peer review:
Annual Report
Constitution
Work Programme Review
Good practice – specific areas to highlight
Are there any immediate risks?
Are there any serious concerns?
10. Any other business:
11. Date and time of next meeting:
9.2 Appendix 2
SWAG SSG User Involvement Brief
9.3 Appendix 3
SWAG SSG Charity Involvement Brief