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South West Strategic Clinical Network Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services

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SSG Annual Report

Somerset, Wiltshire, Avon and Gloucestershire (SWAG)

Cancer Services

Haematology Cancer Network Site Specific Group

Annual Report

2014


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SSG Annual Report

This annual report was prepared by:

Sophie Otton – Chair of the SWAG Haematology SSG

Helen Dunderdale – SWAG Cancer Network SSG Support Manager

This annual report has been agreed by:

Name Position Organisation Date Agreed

Christopher Knechtli Consultant Haematologist Royal United Hospital

Bath NHS Foundation

Trust

May 2015

Deepak Mannari Consultant Haematologist Taunton and Somerset

NHS Foundation Trust

& Yeovil Hospitals

Foundation Trust

May 2015

Stephen Robinson Consultant Haematologist University Hospitals

Bristol NHS Foundation

Trust

May 2015

Anna Morris Consultant Haematologist Weston Area Health Trust May 2015


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SSG Annual Report

Haematology NSSG Annual Report Contents

Section Contents Measures Page

1 Overview, achievements and challenges

1.1 Overview of report 4

1.2 Overview of service 4

1.3 Achievements and key service improvements over the past 12 months

4

1.4 Challenges for the SSG moving forward

5

2 The Network Group Meeting and membership

13-1C-103h

2.1 Chair of the SSG 5

2.2 Network Group Membership 13-1C-102h 5

2.3 Attendance Spreadsheet 5

2.4 Extended Members of the SSG 7

2.5 Network Group Quoracy 7

3 Service Development 13-1C-104h

3.1 The National Cancer Survivorship Initiative

8

3.2 The function of the SSG meeting

8

4 Chemotherapy Treatment Algorithms

13-1C-108h 8

5 Patient Experience 13-1C-111h

5.1 User Involvement 8

5.2 The National Cancer

Experience Survey

9

6 Clinical Outcome

Indicators and Audits

13-1C-112h

6.1 Network Audits 10

6.2 Clinical quality indicators 10

7 Research


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7.1 Discussion of Clinical Trials 13-1C-113h 10

7.2 Recruitment Action Plan 10

7.3 Current Clinical Trials Activity 11

7.4 Recruitment of Teenagers and Young Adults

14

1. Overview, achievements and challenges

1.1 Overview of report

This report reflects the period of activity for the SSG from 1st January 2014 to 31st December 2014. It

contains a summary of the activity of the Haematology SSG for this period against several key

performance indicators that have been outlined in the National Cancer Peer Review Programme.

The report should be reviewed alongside three other key documents for the SSG: the Constitution,

Clinical Guidelines and the Work Programme. The Haematology SSG Constitution provides an

overview of how the SSG operates, outlining the general working processes of the SSG, the patient

referral pathways and the guidelines to which the SSG adheres. The investigational and clinical

guidelines outline the diagnostic and treatment processes agreed by the network group. The Work

Programme summarises the key areas for growth, development and improvement of the SSG over

the next financial year (and beyond where appropriate). All four documents should be reviewed

together to give a full overview of the SSG, its performance and future plans.

1.2 Overview of service

The Haematology site-specific group aims to oversee, support and bring together the viewpoints of

all the multi-disciplinary teams working within the haematological cancer services across the

Network. The group also aims to ensure the same standard of care and treatment with this type of

cancer across the Network. The SSG also serves to ensure implementation of NICE guidelines for

investigation and treatment of Haematological cancers and to provide guidelines for supportive care.

The group undertakes the process of protocol development and review. It supports a programme of

education on key developments in the field of Haematological cancer. It also aims to continue and

expand the clinical trials programmes available within individual trusts.

1.3 Achievements and key service improvements over the past 12 months

The following are noted as key achievements and service improvement of the Haematology SSG over

the past 12 months (during 2014).

The SSG has undergone reconfiguration in line with the national cancer clinical networks,

incorporating Gloucester and Cheltenham NHS Trust.

The SSG has undertaken a major review of chemotherapy protocols in 2014.

The SSG has appointed a new patient representative.

The SSG has engaged in an educational programme.

The SSG has conducted a clinical audit.


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1.4 Challenges for the SSG moving forward

The key challenges for the Haematology SSG moving forward have been highlighted below.

Ensuring the SWAG website is fully functional, with all currently used chemotherapy

protocols available.

Ensuring implementation of NICE guidance on investigational pathways.

Ensuring that all Trusts in the Network regularly contribute to the educational and audit

programmes.

Continuing to expand and support the clinical trials programme with both late and early

phase trials.

2. The NSSG Meeting and Membership (measure 13-1C-102h)

2.1 Chair of the SSG

Dr Sophie Otton has been the Chair of the Haematology SSG since 2012. A list of responsibilities for

the SSG, for the Chair, and other members of the SSG, plus the SSG terms of reference, can be

found in 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):

http://www.swscn.org.uk/wp/wp-content/uploads/2014/08/Cancer-Network-Clinical-Groups-

Recurrent-Arrangements-v5-Final.pdf

The NSSG meetings are also conducted in line with the Manual for Cancer Services,

Haematology Measures (Version 1.0):

2.2 Network Group Membership (measure 13-1C-103h)

The Haematology SSG is held approximately every five months. In 2014, meetings were held on the

10th June 2014 and the 14th October 2014.

The table below shows the core members of the SSG and their attendance.

All participants at MDTs are welcome to attend the SSG meetings.

Table 1.0 Haematology SSG core members and attendance

Name Position Trust 10/06/2014 14/10/2014

Sophie Otton Consultant Haematologist

North Bristol Trust (NBT)

√ √

Deepak Mannari Consultant Haematologist

Taunton and Somerset NHS Foundation Trust (TST) & YDH

√ √

http://www.swscn.org.uk/wp/wp-content/uploads/2014/08/Cancer-Network-Clinical-Groups-Recurrent-Arrangements-v5-Final.pdf

http://www.swscn.org.uk/wp/wp-content/uploads/2014/08/Cancer-Network-Clinical-Groups-Recurrent-Arrangements-v5-Final.pdf


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Christopher Knechtli

Consultant Haematologist

Royal United Hospitals Bath NHS Foundation Trust (RUH)

√

Stephen Robinson

Consultant Haematologist

University Hospitals Bristol NHS Foundation Trust (UH Bristol)

Anna Morris Consultant Haematologist

Weston Area Health NHS Trust (WAHT)

√

Jenny Bird

Consultant Haematologist and Clinical Director of Oncology


√ √

Matthew Beasley

Consultant Oncologist


√

Samreen Siddiq Consultant Haematologist

North Bristol Trust

√ √

Lisa Lowry Consultant Haematologist / Research Lead


√ √

James Griffin Consultant Haematologist


√

Sally Moore Consultant Haematologist / Research Lead

Royal United Hospitals Bath NHS Foundation Trust (RUH)

Julian Kabala Consultant Radiologist


Becky Bagnall Consulant Pharmacist


Georgina Holmes

Consultant Pharmacist


Andrea Preston Consultant Pharmacist


√

Gwenda Morgan Clinical Nurse Specialist

Weston Area Health NHS Trust (WAHT)

√

Graeme Butters Clinical Nurse Specialist


√


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Teresa Veale Clinical Nurse Specialist

Yeovil District Hospital NHS Foundation Trust (YDH)

Theresa Peters Macmillan Haematology Nurse


Victor Barley User Representative √

Maxine Taylor

Senior Research Delivery Manager / Organisational Development Lead

Clinical Research Network - West of England (CRN)

√

Lynne Pearson Cancer Manager

Taunton and Somerset NHS Foundation Trust (TST)

√

Catherine Neck Macmillan Survivorship Lead


Helen Dunderdale

Cancer Network SSG Support Manager / user representative support

South West Strategic Clinical Network (SWSCN)

√

Samantha Larsen

SSG Support Administrator

South West Strategic Clinical Network (SWSCN)

√

2.3 Extended Members of the SSG

The table below notes the extended membership of the SSG during 2014 and their attendance at the

meetings.

Table 1.1 Extended SSG members and their attendance at the SSGs held on the 14th October 2014.

Name Role

Lynn Pearson Cancer Manager

Catherine Neck Macmillan Survivorship Lead

David Dutton Specialist Registrar in Haematology

2.4 SSG Quoracy

The SSG meeting held on the 10th June 2014 did not have representation from all required

specialities. The notes were distributed to the core SSG members who were unable to attend. This

meeting was held prior to the formation of the SWAG cancer network SSG support service, and was

organised in the absence of any administrative support.

The meeting held on the 14th October 2014 was considered quorate. Although imaging and

pathology specialists were unable to attend, the information from the meeting was distributed and


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the opportunity to participate in the discussion after the meeting was given to all of the core

members who were unable to attend.

3. Service Development (measure 13-1C-104h)

3.1 Implementation of the National Cancer Survivorship Initiative

The Haematology SSG has agreed to conduct a review of patient follow up systems in line with the

practices recommended by the National Cancer Survivorship Initiative. Due to the ever increasing

population of patients living with and beyond cancer, the current follow up systems are not

sustainable, therefore new follow up methods need to be established to provide the support that

patients require to lead as ‘healthy and active a life as possible, for as long as possible’1. The

haematology NSSG will work to ensure that all patients have access to the recommended Recovery

Package. The Recovery Package consists of holistic needs assessments, treatment summaries and

patient education and support events. The haematology NSSG will also develop risk stratified

pathways of post treatment management, promote physical activity and seek to improve

management of the consequences of treatment.

3.2 The service development function of the SSG meeting

The SSG meeting will have an educational function, review major service developments on a regular

basis, and escalate operational issues to the Cancer Operational Group and funding issues to the

clinical commissioning groups.

4. Chemotherapy Treatment Algorithms (measure 13-1C-108h)

An agreed list of acceptable chemotherapy treatment algorithms is reviewed bi-annually

and available to view on the SWSCN website.

Any treatment algorithms that require updating are listed in the NSSG work programme.

5. Patient Experience and Feedback (measure 13-1C-111h)

5.1 User involvement

The NSSG has a user representative member who contributes opinions about the haematology

service at the NSSG meetings. The user representative has not identified any areas for

improvements to the patient experience as of yet, and has stated at the SSG meeting in October

2014 that the quality of care he has received has been satisfactory.

1 http://www.ncsi.org.uk/

http://www.swscn.org.uk/networks/cancer/site-specific-groups/aswg-site-specific-groups-2/haematology-ssg/haematology-ssg-information-secondary-tertiary-care-practitioners/


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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 further user representatives.

5.2 Feedback from the National Cancer Patient Experience Survey

The results from the National Patient Experience Survey are included as a recurring agenda item at

the SSG meetings. The results are examined by looking at Trust level best practice to be shared,

Trust / network level priorities identified for pathway improvements, and the actions required to

address identified priorities.

The feedback from the 2014 survey identified the following priorities:

Increase the information given to patients about clinical trials

Increase the information given to patients on the financial assistance available

Increase awareness of who the patient’s keyworker is

The priorities identified resulted in the following actions:

Research awareness leaflets added to patient information packs

Citizen Advice financial advice form included in patient information packs

Posters with contact details of the Clinical Nurse Specialists (Keyworkers) displayed in clinics

The Haematology SSG identified the key priority for improving patient experience as the need to

increase the number of clinical nurse specialists within the Trusts.

6. Clinical Outcome Indicators and Audits (measure 13-1C-112h)

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.

6.1 The network audit for 2014

Audit of Myeloma data collection. All five Trusts were invited to participate; returns were available as a separate attachment. The principal learning point was thepoor return of proformas with two Trusts submitting nil returns. Returns documented correctly (64%) showed evidence of documentation of haemoglobin, creatinine, calcium, paraprotein and/or serum free light chain levels. It was also noted that 72% of the proformas demonstrated documented bone marrow aspirate results. Improvements, suggested in discussion after presentation of the audit, were to continue to use the staging systems to determine the choice of therapy for individual patients. FISH analysis of marrow material on diagnosis remains controversial. There is still not international consensus as to the optimal treatment approach for different risk groups and therefore application of cytogenetics to initial


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treatment decisions remains quite variable. It was noted that when clinical trials were offered by individual Trusts there was a high uptake, but it was also noted that co-morbidities were clearly recorded on proforma information and this data is difficult to re-extract in a snapshot. A re-audit was suggested after a period of 12 months

6.2 The network audit for 2015

Dosing of Chemotherapy in Obese Adult Patients with Cancer – a survey of current clinical practice

The audit was initially discussed at the meeting on the 14th October 2014. The first set of results was

presented on the 11th March 2015. it is planned for the next set of results to be discussed in October

2015.

6.3 Clinical quality indicators

10/06/2014. A list of clinical guidelines for updating was circulated. Cancer outcomes and datasets were discussed relating to comparison of Trusts performance. 14/10/2014. There was extensive discussion of clinical practice. Many of the guidelines circulated for updating were completed in this meeting. Methods to improve cancer waiting times were discussed.

7. Clinical Trials and Research Activity (measure 13-1C-113h)

7.1 Discussion of clinical trials

Members of the SSG discuss each MDT’s report on clinical research trials within every SSG meeting.

A list of all of the open trials on the haematology NIHR portfolio, and potential new trials, is brought

to each SSG meeting by the West of England Clinical Research Network (CRN) Cancer Research

Delivery Manager.

Due to the CRN’s 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. Potential new trials to open and actions to improve

recruitment will be documented in the NSSG work programme. The NHS staff members nominated

as the research leads for the NSSG are Lisa Lowry and Sally Moore.

The SSG are currently exceeding their recruitment targets for the period April 2015

7.2 Recruitment Action Plan

Lisa Lowry and Sally Moore have agreed to jointly undertake the roles of research lead for the SSG

and subspecialty lead for the West of England Clinical Research Network. They will form links with


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the National studies groups, map trials, and increase access to research across the region by cross

referring and challenging situations where this is not occurring.

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 haematology oncology patients.

At the next SSG meeting, the research report will examine recruitment into individual trials in more

detail in order to identify methods to boost recruitment.

Potential trials to open that are in set-up on the NIHR portfolio will be discussed at the next SSG

meeting on the 14th July 205. These can be viewed via the following link:

http://csg.ncri.org.uk/portfolio-maps

Other actions generated from the SSG meetings in 2014 are to look into how funding can be sourced

for AML18, and to improve the process of expressing an interest in potential commercial trials.

7.3 Clinical Trials Activity

The following tables were compiled by Maxine Taylor, Senior Research Delivery Manager for the

West of England Clinical Research Network. They provide a summary of the clinical trial recruitment

into National Institute of Health Research trials during April 2014 – January 2015.


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Table 2 Recruitment to Haematology Oncology studies by study design type

Table 2.1 Recruitment to Lymphoma studies by study design type

Table 3 Lymphoma and Haematology oncology portfolio


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Lymphoma & Haematology Oncology portfolio for CRN - West of England + Taunton & Yeovil - SWAG for year April 2014 to end of January 2015

Sum of Count Column Labels

Row Labels

Gloucestershire Hospitals NHS Foundation Trust

North Bristol NHS Trust

Royal United Hospital Bath NHS Trust

Taunton and Somerset NHS Foundation Trust

University Hospitals Bristol NHS Foundation Trust

Weston Area Health NHS Trust

Grand Total

AML 17 9 5 5 6 29

FIGARO 2 2

LI-1 2 2 5

MAJIC 1 1 3

MaPLe: Molecular profiling for lymphoma

3

MDSBio 21 11 29 5 111

MUK five 4 4

MYELOMA XI 9 12 13 34

NCRN261 - Herpes Zoster in haematopoietic stem cell transplant (HCT) recipients

2

NCRN480 STRATUS- pomalidomide+dexa in refrectory/relapsed myeloma

1 1

NCRN549 - Ruxolitinib in Myelofibrosis

4 7 11

PACIFICO 2 1 3

ProT4 (Prophylactic Transfer of CD4 Lymphocytes)

1 1


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6.4 Teenage and Young Adults (TYA)

Five TYA patients were recruited to Haematology Trials in 2014.

-END-

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