NICaN Teenage & Young Adult Project Steering Group
Amended Terms of Reference for Agreement from Meeting 14 March 2014
NICaN TEENAGE AND YOUNG ADULTS PROJECT STEERING GROUP
TERMS OF REFERENCE
Purpose
The purpose of the Teenage and Young Adults Project Steering Group is to work together to
ensure equitable access to high quality, age appropriate treatment and care, and to ensure
the best possible experience and outcome for the teenager and young adult’s patient group,
with a cancer diagnosis, and their families.
The TYA Project Steering group will oversee and lead on the development of a regional
project plan which aims (within current resource constraints) to implement the relevant TYA
Service Framework for Cancer Prevention, Treatment and Care1, Standards 31 & 32 and the
NICE, Improving Outcomes for Children & Young People with Cancer Guidance2.
Scope
Teenagers & Young Adults with a cancer diagnosis are defined, for the purpose of the NICaN
TYA Project Steering Group, as any person from the age of 14 years of age up to the eve of
the individuals 25th birthday.
In order to ensure high quality person centred care for TYA’s with a cancer diagnosis, the
Steering Group will:
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Provide steering to the Network Teenage & Young Adults Project Manager and give
expertise opinion to assist progress with the fixed term project;
be the authoritative source of expertise and guidance to planners, commissioners and
providers of services;
make recommendations as to how all aspects of care for TYA’s with a cancer diagnosis
in NI should be coordinated to ensure there is a balance of service provision and
allocation of resources to address the needs of this unique group of service users;
support the identification of good practice for recommendation and dissemination;
review current practice and recommend service/pathway redesign which will result in
improved patient outcomes and patient experience; and
build on the findings of ‘Shaping the Future of TYA Services in NI’3 to inform teenage and
young adult service developments.
Core Membership
Membership will be by invite to those deemed to have a vested interest in the planning,
development and delivery of Teenage & Young Adults Cancer Services in Northern Ireland.
The following core member constituencies were identified as central to the development of a
robust project structure to lead and implement improvements in Services across Northern
Ireland for Teenagers & Young Adults with Cancer.
1 Service Framework for Cancer Prevention, Treatment & Care
http://www.dhsspsni.gov.uk/sqsd_service_frameworks_cancer
2 NICE, Improving Outcomes for Children & Young People with Cancer Guidance
http://guidance.nice.org.uk/CSGCYP
3 NICaN, Shaping the Future of Teenage & Young Adults Cancer Services in NI, 2011
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NICaN Teenage & Young Adult Project Steering Group
Amended Terms of Reference for Agreement from Meeting 14 March 2014
Constituent
Constituent Secured
Clinical Lead
Agreed as Dr Anthony McCarthy
Chair/Consultant Paediatric Oncologist
NICaN
Lisa McWilliams – Network Manager
Darren McKinley – TYA Project Manager
Public Health Agency
Mary Jo Thompson – Nurse Consultant
Partner
Laura Clarke – Teenage Cancer Trust
Cancer Centre
Joanne Cullen – Assistant Cancer Services Manager, BHSCT
Cancer Unit
Pat McClelland – Cancer Manager, NHSCT
BHSCT
Renee Reid – TYA Clinical Nurse Specialist
BHSCT
Dr Michael Quinn – Consultant Haematologist
BHSCT
Dr Heather McCarty – Consultant Clinical Oncologist
BHSCT
Simon Darby/Laurena Kane – TYA Social Workers
Richard Hardy - Social Work Manager BHSCT
RBHSC
Dr Robert Johnston – Paediatric Consultant Haematologist
RBHSC
Katherine MacAleese – Children’s Haematology Staff Nurse
RBHSC
Lorna Stevens – Paediatric Macmillan Nurse
Department of Health
??????????
Commissioning
??????????
Patient Representative
Renee Reid/Pat McClelland to identify possible candidate
Parent Representative
??????????
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NICaN Teenage & Young Adult Project Steering Group
Amended Terms of Reference for Agreement from Meeting 14 March 2014
Meeting Frequency & Arrangements
The TYA Project Steering Group will meet quarterly in its first year, and to be reviewed
thereafter. Secured dates for meetings in 2014 are detailed below:
Meeting
One
Two
Three
Four
Date
Friday 14 March 2014
Friday 20 June 2014
Friday 19 September 2014
Friday 23 January 2015
Venue
Jim Elliot Room - RVH - Belfast - 9.00am
Jim Elliot Room - RVH - Belfast - 9.30am
TBC – 9.30am
TBC – 9.30am
Venue confirmation will be circulated at the earliest opportunity; papers will be circulated no
less than 5 working days before meetings. The TYA Project Manager will be responsible for
the timely distribution of agenda’s, minutes/notes and papers relating to the work of the TYA
Project Steering Group.
Accountability and Reporting
The TYA Project Steering Group’s authority will come from its credibility. The credibility will
be evidenced by the application of the Group and its member’s knowledge and expertise.
Individual members will be accountable to their own profession. Core members are
responsible for reporting back within their professional group and to ensure adequate
consultation and involvement in key areas of work.
The Lead/Chair of the group will be held accountable to the NICaN Board, via a member of
the NICaN management team, for the delivery of the agreed work plan. The Lead/Chair will
be responsible for reporting to the NICaN Board annually.
Attendance
In order to keep up to date with the progression of the TYA Project Steering Group it is crucial
members attend regularly. If a nominated member fails to attend 2 consecutive meetings
contact will be made to establish reason for non-attendance.
TYA Project Steering Group Support
Darren McKinley – NICaN TYA Project Manager
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