3CCN Three Counties Cancer Network: Gloucestershire, Herefordshire, South Worcestershire and parts of Powys.
Peninsula Cancer Network: Devon, Cornwall.
ASWCS Network: Avon, Somerset, Wiltshire.
The SWC Hub Parent User Involvement Group Terms of Reference
The HUB Parent User Involvement Group is a key stakeholders group for the South West,
covering Three Counties, Peninsula and Avon, Somerset and Wiltshire Cancer network
areas. The term user is taken to include parents, carers or other family members who has
experience of/or been affected by cancer in children and young adults.
A user involvement group is a partnership group made up of patients, carers, ex-patients,
voluntary group representatives and healthcare professionals. Together these people meet
to try to improve local cancer services. The group aims to provide a supportive framework
in which everyone is encouraged and enabled to influence the way that improvements are
made to the quality, delivery and accessibility of cancer services.
A user involvement group is not a support group, although members are supportive of
each other. Neither is it a complaints forum, but we can advise you about how to make a
complaint if you need to do this.
The purpose of the Hub Group is:
1. Influencing Services
The Group should be an executive body aiming to influence services. The Group should
identify shortfalls in services and try to address those by linking with the appropriate
groups in the three Cancer Networks as well as national and regional bodies like National
Alliance of Childhood Cancer Parents Organisations (NACCPO) or CLIC Sargent. There
are variety of regional and local groups and forums that the Group are involved with.
The Group should take specific things forward on behalf of health professionals and
service users. The Group should also act as an advocate for parents/carers who do not
wish to join a committee but wish to be represented. The group should be involved in
different aspects of improving local services – for example lobbying for picking up the cost
of CLIC nurses or finding out what has happened in the regions Hospitals as a result of the
peer review.
The Group also stressed the importance of timing of treatment and making services more
reflective to users’ needs – families do have a life outside the hospital. It is important to be
clear about how long one has to wait for blood or other test results. This may have
implications in terms of redesign of services and influence policies to make services more
responsive to user needs.
2. Education for Health Professionals
The importance of good communication skills is recognised. Communication skills training
should be available for all staff during their induction. Service Users should get involved in
the recruitment and training of staff. Service Users can provide a different perspective -
what it feels like to be on the receiving end of the service.
3. Information & Support for Parents
The Group acknowledges the importance of good information and support for parents,
siblings and children. Parents, children and siblings should be offered an opportunity to
talk to someone who has been through a similar experience. The Group should provide
information and resources for interested parties who are willing to set up local support
groups.
The Group should also be involved in improving information for children and their families.
The information should focus on different aspects of treatments as well as available local
services. This information will be available on a web site. The web site would also promote
the activities of this Group.
The Group recognises the need for increased bereavement support and empowering
parents to be able to support their children during that difficult time.
Aims
• Provide a suitable environment for users and health professionals to meet on equal terms
• Highlight important issues for families
• Involve a balance of user and healthcare/ voluntary sector members on the group
Objectives
• Establish a viable sustainable and representative membership base.
• Publicise the group within the three network areas via the website, health professionals and support groups.
• Continue membership on the regional ‘Supranetwork’ meeting and Children and Young Peoples Site Specific Groups in the relevant networks.
• Act as a communication channel between families, trusts and the network managerial structures
• Ensure the group is actively involved on network projects
Group Chair
The group is chaired by one of the parent/carer group members. This role is a two year tenure initially and then subject to review.
Equal opportunities statement: The Hub User Involvement Group is committed to give opportunities for everyone to get involved regardless of age, sex, religion, ability, ethnic origin or status.
The SWC Hub User Involvement Group ratified its terms of reference on 8 June 2010. They will
be revised in June 2011, unless the group feels the need to do so at an earlier stage.
