Download Soft Tissue Sarcoma

Peninsula Cancer Network
(North, East & West Devon, South Devon & Torbay,
Kernow)
Network Site Specific Group for Sarcoma
Constitution
Approval Date: January 2015
Revision Date: June 2018
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DATE ISSUED
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PCN Sarcoma NSSG Constitution v1.0 – January 2016
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OWNER
PCN Sarcoma NSSG
PCN Sarcoma NSSG
1
Constitution of the Peninsula Cancer Network
Site Specific Group for Sarcoma
Agreement cover sheet
This constitution was prepared by:
Toby Talbot – Chair of the Peninsula Cancer Network (PCN) Sarcoma SSG Group, Consultant Oncologist, Royal
Cornwall Hospitals NHS Trust.
Liz Boylan – Peninsula Cancer Network SSG Manager
This constitution has been agreed by:
Name
Position
Toby Talbot
Consultant Oncologist/Chair
Chris Mills
David Silver
Consultant Plastic &
Reconstructive Surgery
Consultant Radiologist
Col. Chris Taylor
Consultant Surgeon
PCN Sarcoma NSSG Constitution v1.0 – January 2016
Date agreed
Royal Cornwall Hospitals NHS
Trust
Royal Devon & Exeter NHS
Foundation Trust
Royal Devon & Exeter NHS
Foundation Trust
Plymouth Hospitals NHS Trust
2
Table of Contents
1.
Statement of Purpose .............................................................................................................................................. 5
2.
Terms of Reference for the Group 14-1C-101l......................................................................................................... 5
3. Structure and Function ............................................................................................................................................... 6
3.1
Role of the Group......................................................................................................................................... 6
4. Network Configuration 14-1C-101l ............................................................................................................................ 6
4.1
Soft Tissue Sarcoma ..................................................................................................................................... 7
4.2
Bone Sarcoma .............................................................................................................................................. 7
4.3 Network Group Members 14-1C-101l, 14-1C-104l ......................................................................................... 7
4.4
Network Group Membership ....................................................................................................................... 9
4.5
Group Meetings 14-1C-105l ......................................................................................................................... 9
4.6
Work Programme and Annual Report 14-1C-106l ....................................................................................... 9
4.7
Designated Diagnostic Services .................................................................................................................. 9
4.8
Designated Chemotherapy Departments & Practitioners 14-1C-102l, 14-1C-107l ..................................... 10
4.9
Designated Radiotherapy Departments & Practitioners 14-1C-102l, 14-1C-107l ..................................... 10
5. Pathology 14-1C-108l ................................................................................................................................................. 10
5.1
Molecular Biology/Cytogenetic Facilities 14-1C-103l, ............................................................................... 11
5.2
Designated GIST Histopathologists 14-1C-108l......................................................................................... 11
6. Coordination of Care/Patient Pathways .................................................................................................................... 11
6.1
Primary Care Referral Guidelines ............................................................................................................... 11
6.2
Referral Guidelines for Patients Moving Between Teams ......................................................................... 11
6.3
Clinical Guidelines for Soft Tissue Sarcoma – Limb & Trunk 14-1C-109l ................................................... 12
6.4 Clinical Guidelines for Soft Tissue Sarcomas Presenting to Site Specialised MDTs 14-1C-111l ..................... 12
6.5
Chemotherapy Treatment Algorithms 14-1C-112l .................................................................................... 12
6.6
Patient Pathways for Initial Referral and Diagnosis for Soft Tissue Sarcoma (Limb & Trunk) 14-1C-113l
12
6.7 Patient Pathways for Assessment, Treatment and Follow up for Soft Tissue Sarcoma (Limb & Trunk) 141C-115l ................................................................................................................................................................... 12
6.8
Patient Shared Care Pathways for Soft Tissue Sarcomas Presenting to Site Specialised MDTs 14-1C-117l
12
7. Patient Experience 14-1C-118l ................................................................................................................................. 13
8. Clinical Outcomes/Indicators .................................................................................................................................... 13
8.1
Clinical Outcomes Indicators and Audits 14-1C-119l ................................................................................. 13
8.2
Discussion of Clinical Trials 14-1C-120l ...................................................................................................... 13
9. Data Collection .......................................................................................................................................................... 13
PCN Sarcoma NSSG Constitution v1.0 – January 2016
3
9.1
Network-wide Minimum Dataset .............................................................................................................. 13
9.2
Network Policy for Collection of MDS ....................................................................................................... 14
10. Distribution of Guidelines and Protocols ................................................................................................................. 14
PCN Sarcoma NSSG Constitution v1.0 – January 2016
4
1. Statement of Purpose
The Peninsula Cancer Network exists to secure equal access to high quality care for all cancer patients; strive
for better clinical outcomes and improve the experience of patients, their carers and families throughout
screening, diagnosis, treatment, aftercare and survival.
The Network has an increasing role in the prevention of cancer and reducing health inequalities. To achieve
these goals it collaborates with all healthcare providers, commissioners, patients and their carers throughout
Devon, Cornwall and the Isles of Scilly.
The Peninsula Cancer Network serves a population of 1.7 million people and is comprised of the following
organisations:
Clinical Commissioning Groups
Northern, Eastern & Western Devon CCG
South Devon & Torbay CCG
NHS Kernow
Acute Hospitals
Northern Devon Healthcare NHS Trust
Plymouth Hospitals NHS Trust
Royal Cornwall Hospitals NHS Trust
Royal Devon & Exeter NHS Foundation Trust
South Devon Healthcare NHS Foundation Trust
Hospices
Hospiscare, Exeter
Mount Edgcumbe Hospice, Cornwall
North Devon Hospice
Rowcroft Hospice, Torquay
St Julia’s Hospice, Cornwall
St Luke’s Hospice, Plymouth
The following document outlines the constitution, roles and responsibilities of the Group.
2. Terms of Reference for the Group 14-1C-101l
In response to the publication of the Manual for Cancer Services (2004) a number of clinical sub- groups
were established to address services for specific types of cancer.
Network Site Specific Groups have collective responsibility, delegated by the Network Executive Board, for
the coordination and consistency across the Network for cancer policy, practice guidelines, audit, and
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Peninsula Cancer Network Sarcoma NSSG 2015
research and service improvement for each type of cancer.
Network site specific Groups are multidisciplinary with representation from professionals across the patient
care pathway as well as involvement and representation from patient and carers.
3. Structure and Function
3.1
Role of the Group
Network Site Specific Groups have been established to:
 Act as the Network Executive Board’s primary source of tumour site specific clinical opinion for the
network;
 Advise and consult on service planning to ensure services are in line with national guidance in order to
promote high quality care and reduce inequalities in service delivery;
 Ensure Network decisions become integrated into local practice;
 Monitor progress on meeting National Cancer Standards and ensure action plans agreed following Peer
Review are implemented
 Promote links between teams and other relevant Network Groups
The key objectives of Network Site Specific Groups will be to:
 Establish common referral and clinical guidelines for the Network
 Agree a tumour site specific minimum data set and support consistent data collection across the
Network
 Engage in service improvement by using appropriate redesign tools and techniques via process
mapping, capacity and demand measurement and redesign
 Agree and support an annual audit programme both at regional and local level
 Agree a common approach to research & development working with the Network research team,
participating in nationally recognised studies whenever possible;
 Consult with cross-cutting Groups on issues involving chemotherapy, cancer imaging,
histopathology and laboratory investigation and specialist palliative care;
 Identify emerging new cancer drug treatments and technologies which require appraisal by
commissioners through the Peninsula Health Technology Appraisal process;
 Support the development of education and training programmes for teams;
 Support effective patient and carer involvement in service planning.
4. Network Configuration
14-1C-101l
This constitution covers services delivered for adults only (i.e. over 19). Services for those 19 or under are
cared for under the South West Children’s Cancer Network, young people aged between 15 and 24 are
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Peninsula Cancer Network Sarcoma NSSG 2015
discussed with the Bristol TYA team.
4.1
Soft Tissue Sarcoma
The Network Board has agreed with the SWSCG that two Soft Tissue Sarcoma MDTs will be established to
serve the population of the Peninsula Cancer Network. The Soft Tissue Sarcoma MDTs will be hosted by:
• Plymouth Hospitals NHS Trust
• Royal Devon & Exeter NHS Foundations Trust
The two MDTs will work jointly to establish the best care pathway for patients with complex needs.
The Sarcoma MDT will deal with retroperitoneal sarcomas. Curative resections will take place at both sites.
4.2
Bone Sarcoma
The Network Board has agreed with the SWSCG that the Bone Sarcoma MDT for population of the
Peninsula will be at Birmingham (Royal National Orthopaedic Hospital) and Oxford. The soft tissue MDT will
develop its relationship with the bone MDT to further facilitate onward referral and follow up according to
the Bone MDT’s protocols.
Click here for Birmingham Bone Sarcoma agreed pathways
http://www.birminghamcancer.nhs.uk/staff/clinical-guidelines/sarcoma
Click here for Oxford Bone Sarcoma agreed pathways
http://www.ruh.nhs.uk/zz_content_include/services/clinical_depts/oncology_services/documents/sarc
oma/Primary_bone_ca_management_pathway.pdf
4.3
Network Group Members
14-1C-101l, 14-1C-104l
Sarcoma Network Site Specific Group Chairperson
Toby Talbot
Consultant Oncologist/Chair
Royal Cornwall Hospitals NHS Trust
NSSG Trial Recruitment Clinical Lead
Rory Rickard
Consultant Plastic Surgeon
Patient Champion & Information Leads
Sarah Sandford
Clinical Nurse Specialist
Patient and carer representative
Isobel Cole
Plymouth Hospitals NHS Trust
Royal Devon & Exeter NHS Foundation
Trust
Patient Representative
Plymouth Hospitals NHS Trust
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Peninsula Cancer Network Sarcoma NSSG 2015
Chris Taylor (Col)
Rory Rickard
Col Chris Taylor
Phil Hughes
David Gay
Priya Suresh
Mark Smith
Abdul Gafoor
Liz Ridgeway
Udaiveer Panwar
Ade Oriolowo
Richard Guinness
Plastic Surgeon / MDT Lead
Consultant Plastic Surgeon
Consultant Surgeon
Consultant Radiologist
Consultant Radiologist
Consultant Radiologist
Consultant Histopathologist
Consultant Radiologist
Clinical Nurse Specialist
Consultant Clinical Oncologist
Consultant Histopathologist
Consultant Radiologist
Royal Devon and Exeter NHS Foundation Trust
David Silver
Peter Bliss
Patrick Sarsfield
Chris Mills
John Renninson
Peter Froeschle
Sarah Sandford
Claire Facey
Chris Stone
Kate Allington
Mark Napier
Andrew Redfern
Paul Hughes
Rahul Anaspure
Lead Clinician
Consultant Clinical Oncologist
Consultant Histopathologist
Lead Clinician / MDT Lead
Consultant
Locum Consultant
Clinical Nurse Specialist
Clinical Nurse Specialist
Consultant Plastic Surgeon
Clinical Nurse Specialist
Oncologist
Radiologist
Staff Nurse
Radiologist
Royal Cornwall NHS Hospitals Trust
Toby Talbot
Kim Farmer
Benjamin Casey
Dinuka Kuruppu
Consultant Oncologist
Radiologist
Clinical Nurse Specialist
Radiologist
South Devon NHS Foundation Trust
Richard
Seymour
Peninsula
Cancer Network
Pam Lewins
Liz Boylan
Mel Chandler
Julie Cunningham
Consultant / MDT Lead
Clinical Nurse Specialist
Peninsula Cancer Network Manager
Peninsula Cancer Network Administrator
Peninsula Cancer Research Manager
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Peninsula Cancer Network Sarcoma NSSG 2015
4.4
Network Group Membership
Membership of the Group will be multi-disciplinary in nature with representation from professionals across
the care pathway. All core and extended members of the relevant Acute Trust MDT(s) are invited to
participate in Group activities via Group meetings, working parties and email communications as appropriate.
The Group will work towards developing patient and carer involvement into the Group and patient and carer
representative(s) will be appointed whenever possible. In the absence of patient and carer representatives the
appointed patient champion and information lead will support the group to ensure that user issues are
recognised and addressed.
Dr. Toby Talbot has been elected as Chair of the group. The term of office will be for three years.
Dr. Rory Rickard has been appointed cancer research sub specialty lead and assumes responsibility for
recruitment to trials.
4.5
Group Meetings
14-1C-105l
Meetings will be held at least twice per annum. Liz Boylan, Peninsula Cancer Network Manager and Mel
Chandler, Admin Assistant, will provide managerial and administrative support at group meetings. The group
agrees to operate under the Terms of Reference for the Peninsula Sarcoma Site Specific Group. All members
will be informed of meeting dates and location and be included in distribution of the agendas and minutes.
Minutes, actions and notes of the group meetings will be circulated to all members, trust management teams
and other interested parties. They will also be published on the SWSCN website.
http://www.swscn.org.uk/networks/cancer/site-specific-groups/peninsula-site-specific-groups/softtissue-sarcoma-ssg/peninsula-soft-tissue-sarcoma-ssg-meeting-archive/
4.6
Work Programme and Annual Report
14-1C-106l
The group will produce a Network Annual Report and Work Programme for Soft Tissue Sarcoma.
4.7
Designated Diagnostic Services
Soft Tissue Sarcoma
These clinics have been deemed able to perform biopsies of suspected sarcomas (i.e. the relevant surgical
staff of the clinic have the necessary expertise relating to the specific requirements of sarcoma biopsies).
Local Teams
MDT Lead Clinician
Locality Population
Referring CCG
Plymouth Hospitals
NHS Trust
Rory Rickard
349,481
NHS NEW Devon CCG
Western locality
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Peninsula Cancer Network Sarcoma NSSG 2015
Royal Cornwall
Hospitals NHS Trust
Royal Devon & Exeter
NHS Foundation Trust
Toby Talbot
534,503
NHS Kernow CCG
David Silver
383,040 East Devon locality
164,997 North Devon locality
NHS NEW Devon CCG
Eastern locality
286,000 South Devon locality
NHS South Devon &
Torbay CCG
South Devon Healthcare Peter Bliss
NHS Foundation Trust
Total
4.8
1,718,021
Designated Chemotherapy Departments & Practitioners
14-1C-102l, 14-1C-107l
Chemotherapy for radical (including adjuvant) and palliative treatments of soft tissue sarcoma will be only be
provided by core members of the MDTs who have specified time in their job plans for the care of patients with
the relevant sarcoma including time worked in a designated department. See local MDT Operational Policies
for details.
Chemotherapy Service
Consultant Oncologists
Northern Devon Healthcare NHS Trust
Via RD&E
Plymouth Hospitals NHS Trust
Royal Cornwall Hospitals NHS Trust
Royal Devon & Exeter NHS Foundation Trust
Uday Panwar
Toby Talbot
Peter Bliss/ Mark Napier
South Devon Healthcare NHS Foundation Trust
Peter Bliss
4.9
Designated Radiotherapy Departments & Practitioners
14-1C-102l, 14-1C-107l
Radiotherapy for radical (including adjuvant) and palliative treatments of soft tissue sarcoma will be only be
provided by core members of the MDTs who have specified time in their job plans for the care of patients
with the relevant sarcoma including time worked in a designated department. See local MDT Operational
Policies for details.
Radiotherapy Service
Consultant Oncologists
Northern Devon Healthcare NHS Trust
Plymouth Hospitals NHS Trust
Royal Cornwall Hospitals NHS Trust
Royal Devon & Exeter NHS Foundation Trust
South Devon Healthcare NHS Foundation Trust
Via RD&E (Peter Bliss)
Uday Panwar
Toby Talbot
Peter Bliss
Peter Bliss
5. Pathology 14-1C-108l
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Peninsula Cancer Network Sarcoma NSSG 2015
The Group has adopted the guidelines of the Peninsula Cancer Network Pathology Group.
Pathology Network Reporting Guidelines
Click here for Sarcoma pathology guidelines
https://www.rcpath.org/resourceLibrary/g094_datasetsofttissue_mar14-pdf.html
Pathology Network External Referral Policy
Click here for pathology network referral policy
https://www.rcpath.org/resourceLibrary/g094_datasetsofttissue-proforma_jan14-docx.html
5.1
Molecular Biology/Cytogenetic Facilities
14-1C-103l,
Cytogenetic and molecular biology investigations on sarcoma cases will be provided by the following
hospitals:


5.2
Royal Marsden Hospital: Prof. Cyril Fisher
Birmingham Hospital: Chaz Mangham
Designated GIST Histopathologists
14-1C-108l
The designated consultant histopathologists who and only who will be responsible for the final reporting and
reviewing of the histological diagnosis of GIST is Dr Tim Bracey, Plymouth Hospitals NHS Trust, who is a Lead
Pathologist for the Plymouth Hospitals NHS Trust Upper GI SMDT and participates in the EQA scheme.
6. Coordination of Care/Patient Pathways
6.1
Primary Care Referral Guidelines
Primary Care practitioners will refer all patients defined by the “urgent, suspicious of cancer”
guidelines for sarcomas to the contact point at the local designated Diagnostic Clinic.
6.2
Referral Guidelines for Patients Moving Between Teams
Referring clinicians should ensure that all relevant information is provided to facilitate the continuity of care
and avoid unnecessary delays.
Patients with synchronous sarcomas and cancers at other sites
Such patients will be discussed in the Sarcoma MDT. Lead responsibility will be shared with the other sitespecific MDT, until it becomes clear which MDT would be best to lead in each individual case.
Network clinical guidelines will be reviewed at least every three years or on the publication of new guidance.
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Peninsula Cancer Network Sarcoma NSSG 2015
It is the responsibility of the Chair of the Group to ensure that all Network guidelines are up to date and
reflect current practice.
6.3
Clinical Guidelines for Soft Tissue Sarcoma – Limb & Trunk
14-1C-109l
The Sarcoma Group has agreed clinical guidelines for the management of soft tissue sarcoma.
The Group has adopted the Peninsula Radiotherapy Guidelines and Protocols for soft tissue sarcoma.
Click here for Radiotherapy Guidelines and Protocols
http://www.sor.org/sites/default/files/documentversions/National%20Radiotherapy%20Implementation%20Group%20Report%20IGRT%20Final.pdf
6.4
Clinical Guidelines for Soft Tissue Sarcomas Presenting to Site
Specialised MDTs 14-1C-111l
Patients discussed at site specialist MDTs and are identified as having sarcoma should be referred to the
sarcoma MDT for ongoing investigation and management.
6.5
Chemotherapy Treatment Algorithms
14-1C-112l
The NSSG, in consultation with the Network Chemotherapy Group (NCG) will agree a list of acceptable
chemotherapy treatment algorithms to be reviewed bi-annually.
6.6
Patient Pathways for Initial Referral and Diagnosis for Soft Tissue
Sarcoma (Limb & Trunk) 14-1C-113l
Pathway review ongoing to align with NICE Guidelines.
Note 1: The NICE guidelines recommend General Practitioners (GPs) to consider an urgent direct access
ultrasound scan (to be performed within 2 weeks) to assess for soft tissue sarcoma in adults with an
unexplained lump that is increasing in size. If ultrasound scan findings are suggestive of soft tissue
sarcoma or if ultrasound findings are uncertain and clinical concern persists, GPs should consider a
suspected cancer pathway referral (for an appointment within 2 weeks) for adults.
6.7
Patient Pathways for Assessment, Treatment and Follow up for Soft
Tissue Sarcoma (Limb & Trunk) 14-1C-115l
Pathway review ongoing to align with NICE Guidelines.
6.8
Patient Shared Care Pathways for Soft Tissue Sarcomas Presenting to
Site Specialised MDTs 14-1C-117l
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Peninsula Cancer Network Sarcoma NSSG 2015
Pathway review ongoing to align with NICE Guidelines.
7. Patient Experience
14-1C-118l
Patients are allocated a key-worker from the Nurse Specialist team at the point of diagnosis and this
person supports the patient throughout their treatment, so facilitating continuity and consistency of
care and support.
In the RDEHT the Skin and Sarcoma Nurse Specialist team have been involved in a pilot project
supporting the Living with and Beyond Cancer initiative, initially with patients diagnosed with skin
cancer. Initiatives such as electronic health needs assessments, treatment summaries and health & wellbeing clinics are now offered to patients seen by the Skin MDT. It is anticipated that such resources will
be offered to Sarcoma patients in the coming months.
The Trusts continue to participate in the National Cancer Patient Experience Survey. Due to the small
sample of patients diagnosed with sarcoma, local surveys are also conducted to measure patient
satisfaction with aspects of their care.
8. Clinical Outcomes/Indicators
8.1
Clinical Outcomes Indicators and Audits
14-1C-119l
The trusts continue to adhere to Improving Outcomes Guidance, treatment pathways and referral
guidelines in line with previous Network agreements. Guidelines developed by the British Sarcoma
Group have been identified for potential adoption as Network-wide guidelines and are being reviewed.
8.2
Discussion of Clinical Trials
14-1C-120l
The group discusses patient recruitment into clinical trials at each NSSG meeting. A report is presented
by either the subspecialty lead, Rory Richard, or the peninsula cancer research delivery manager, Julie
Cunningham, highlighting the current and proposed recruitment status of each trust.
Latest recruitment data and overview of studies currently open can be found in ‘The Sarcoma SSG Research
Report – April 2015 on the network website: http://www.swscn.org.uk/networks/cancer/site-specificgroups/peninsula-site-specific-groups/soft-tissue-sarcoma-ssg/peninsula-soft-tissue-sarcoma-ssg-meetingarchive/
9. Data Collection
9.1
Network-wide Minimum Dataset
All Trusts have previously confirmed their compliance with data collection requirements for cancer
waiting times and the Cancer Registry which are within the Cancer Outcome and Services dataset (COSD)
implemented in January 2013. Click here for Cancer Outcomes and Services Dataset
http://www.ncin.org.uk/collecting_and_using_data/data_collection/cosd
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Peninsula Cancer Network Sarcoma NSSG 2015
Together these constitute the MDS for the Sarcoma Advisory Group
9.2
Network Policy for Collection of MDS
Responsibility for data
The Acute Trust first seeing a patient for a particular month or quarter is responsible for ensuring that the
mandated data fields are complete on the database by the national deadline.
The multidisciplinary team responsible for the care of the patient should ensure that information is made
available to allow it to be recorded prospectively and electronically. Cancer Services teams in each Acute
Trust should ensure that the information is transferred within the timescales specified and should establish
robust lines of communication with the colleagues in other Acute Trusts.
10. Distribution of Guidelines and Protocols
Once agreed by the NSSG, documents will be circulated to all core and extended members of the local
MDTs. The MDT Lead for each locality is responsible for forwarding them to relevant clinical colleagues
within their organisation and publishing on local document libraries where applicable. All network agreed
documents will be added to the Network website:
http://www.swscn.org.uk/networks/cancer/site-specific-groups
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Peninsula Cancer Network Sarcoma NSSG 2015