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Thames Valley Cancer Network
Berkshire, Buckinghamshire, Oxfordshire & Swindon
Would you like to become involved in the TVCN
Children’s Cancer Tumour Site Specific Group (TSSG) as a User Representative?
“Site” in a Children’s Cancer (Paediatrics) TSSG refers to all types of children’s
cancer; leukaemias, brain tumours and solid tumours, they are put together into
one group because they are so rare, whereas in adult TSSGs “site” refers to a
part of the body e.g. lung or skin.
What is the Thames Valley Cancer Network?
- It covers all cancer services in Berkshire, Buckinghamshire, Oxfordshire and Swindon – hospitals, community services and palliative care
- Its purpose is to deliver consistent, high quality services in line with NHS Cancer Reform Strategy – to avoid variations in service
- TSSGs (Tumour Site Specific Groups), CCGs (Cross Cutting Groups), the Research Steering Group and other Network Groups are all part of this effort to get services to work across boundaries.
- User Involvement, (defined as parents of children with cancer, patients or carers who’ve had experience of cancer taking part in shaping cancer services), is integral to the work of the Thames Valley Cancer Network
What is the Paediatrics (Children’s) Cancer Tumour Site Specific Group (TSSG)?
This is a group of cancer related health professionals who link with, or specialise in paediatric cancer that meet quarterly to; ensure paediatric cancer services across the network are being delivered and monitored utilising consistent and appropriate clinical protocols and guidelines in accordance with Improving Outcomes Guidance* and Peer Review**.
This group should have user representation.
What is a User Representative?
A cancer patient, a parent of a child with cancer, a carer or other person affected by cancer (in this case paediatric or children’s cancer), who represents the views of ‘users’ of these services. This representation normally comes in the form of attending meetings, but it may be through other means. In this case, the person(s) would attend the quarterly TVCN Paediatrics TSSG as a full member; they would need to read the background papers participate as and when appropriate during the meeting and feedback to other groups as discussed with the Paediatrics TSSG and the TVCN User
Involvement Lead.
This meeting is NOT for campaigning or for complaints but is a platform for constructive partnership working between user representatives and health
professionals about a variety of issues, including service improvement.
Being a user representative is a voluntary role, travel expenses will be reimbursed.
Training and support would be offered by the TVCN User Involvement Lead and other members of the Paediatrics TSSG. You will also be introduced to other User Representatives already involved in other non paediatric tumour site groups across the Thames Valley.
Who can be a User Representative?
Ideally we would like to have representation from both the child and the parents’
perspective. You would need to be able to commit to attending these quarterly
meetings, reading papers beforehand, objectively contributing to group discussion and
feeding back to other groups as mentioned above. There will be a selection process
used by the Paediatric TSSG Chair, TVCN User Involvement Lead and one other
Paediatric TSSG member to decide and offer the role(s) to potential candidates.
How can you apply for this Role(s)?
Please complete the Application Form to be a Paediatrics TSSG User Representative and return to Sarah Pyne. Details below.
For clarification or any queries relating to this role, please also contact Sarah Pyne.
Sarah Pyne
Macmillan Lead for User Involvement and Patient Information
Thames Valley Cancer Network
TVCN, Block 8
Nuffield Orthopaedic Centre NHS Trust
Windmill Rd, Headington
Oxford, OX3 7LD
Email: sarah.pyne@tvcn.nhs
Tel 01865 857 166 / 07785 341 234
TVCN Macmillan User Involvement Lead
This is a post whose role is “To co-ordinate the involvement of users, patients and
carers in improving and developing cancer services across the Thames Valley”.
What is the Improving Outcomes Guidance?
This is Clinical Practice Guidance produced by the National Institute for Health and Clinical
Excellence (NICE), on the appropriate treatment and care of people with specific diseases and
conditions within the NHS. NICE is the independent organisation responsible for providing
national guidance on the promotion of good health and the prevention and treatment of ill
health.
What is Peer Review?
Peer Review is a process by which peer user reviewers review compliance of a cancer network
and the services within it against a set of detailed measures (Manual of Cancer Standards). The
National Cancer Peer Review Programme supports quality assurance of cancer services and
enables quality improvement.
TVNC Application Form
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