Dorset Cancer Network

1
Dorset Cancer Network

• User Involvement Group
• PRESENTING THE DORSET STORY
• Noëline Young

2
Background

• NHS Cancer Plan 2000
• Patient at the centre of services
• Formation of the Dorset Cancer Network and
  Partnership Panel Group
• Commitment to User Involvement

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About The Group

• Initial meetings established in 2002
• Posters, Local Radio, Local Papers
• Invitation of cancer patients and their carers
• By Jan 2003 Group Commenced Activity
• To Date Membership Database in Excess of 80
• Terms of Reference/Chair/Vice Chair x 2
• Multidisciplinary group
• Support for volunteers - Facilitator
• CancerVOICES Training
• Core group of members
• Meetings Monthly

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How do we work?

• Different levels of involvement
• Levels 1-6
• 1 being the most straight forward
• 6 being most complex
• People can choose at what level they want to
  contribute
• Anyone can contribute as little or as much as
  they want
• Everyone has an equal opportunity to progress
  through the levels

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6
Levels of Involvement
5
National rep Peer review CHI Cancer voices
training required
Regional rep Network board meetings Executive
group PPIFs partnership panel link Cancer voices
training required
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3
Development of information Presentations NSSG
representation Participation in staff
interviews Participating in network working
groups Developing groups Cancer voices training
required
Project work Individual group Report back to main
group Confidentiality Proactive Review report
Detailed comments Integration with other support
groups ie feedback their views Cancer voices
training required
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1
Focus groups Reference groups Diaries and
journals One to one interviews Discovery
interviews
Questionnaires Telephone interviews
(receiving) Read, watch and listen to hospital
information (brochures, videos, websites, tapes)
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Activity Key Achievements

• Why and Where are we actively involved?

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Partnership Panel Representation Within
Organisations 2003-2004
Department of Health
Dorset Cancer Network
Dorset and Somerset Strategic Health Authority
Site Specific Meetings
Executive Meetings
Dorset Cancer Network Steering Group
Breast Chair Mr Tony Skene
Upper GI Chair Dr Virginia Laurence
Lung Chair Dr John Miller
Urology Chair Mr John Rundle
Dorset Cancer Research Network Steering Group
Gynaecology Chair Mr Richard Henry
Haematology Chair Dr David Oscier
Dorset Cancer Network Lead Nurses and Allied
Health Professional Forum
Colorectal Chair Mr Lamperelli
Skin Dr Dexter Perry
Dorset Cancer Network Information Group
Head and Neck Chair Dr Perric Crellin
Endocrine Chair Miss Abigail Evans
Hospices
Secondary Care Trusts
Voluntary Organisations
Primary Care NHS Trust (PCT)
Private Hospitals
Lewis Manning House
Poole Hospital NHS Trust (Cancer Centre)
Bournemouth PCT
Derwent Suite
Cancer Care Dorset
The Macmillan Unit Christchurch hospitals (NHS)
Poole PCT
Macmillan
Harbour Hospital
Royal Bournemouth and Christchurch Hospitals NHS
Trust
Marie Curie
North Dorset PCT
Nuffield
Joseph Weld
South West Dorset PCT
Winterbourne
West Dorset General Hospitals NHS Trust
Trimar
South and East PCT
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Dorset Cancer Network Partnership Panel
Representation Within Organisations 2006-2007
KEY
Representation
Department of Health
In Progress
No Progress
Dorset Cancer Network DCN
Dorset and Somerset Strategic Health Authority
DCN Lead Nurses and Allied Health Professional
Forum
Site Specific Meetings
Executive Meetings
DCN Drugs and Theraputics Steering Group
DCN Board
Breast  
Upper GI
DCN Executive Committee
DCN Imaging Group
Lung  
Urology
DCN Research Network Steering Group
Gynaecology  
Haematology
DCN Patient Information Group
DCN Primary Care Group
Colorectal
Skin
DCN Service Development Group
DCN Information Group
Head and Neck
Endocrine  
DCN Supportive and palliative care Strategy group
DCN Chemotherapy Strategy Group
Secondary Care Trusts
Voluntary Organizations
Primary Care NHS Trust
Private Hospitals
Hospices
Lewis Manning House
Poole Hospital NHS Trust (Cancer Centre)
Cancer Care Dorset
Bournemouth and Poole Teaching PCT PCT
Harbour
Nuffield
Macmillan
Royal Bournemouth and Christchurch Hospitals NHS
Foundation Trust
The Macmillan Unit Christchurch
Dorset PCT
Winterbourne
Marie Curie
Support Groups
Weldmar Cancer Care Dorset
Dorset County Hospital NHS Foundation Trust NHS
Trust
PALS
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Regional and National Representation

• Regional and National Macmillan Cancer
  Partnership Projects
• National Cancer Network Development programmes
• National Cancer Services Collaborative Events
• National All Parliamentary Group On Cancer
• National Zonal Peer Review Team

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So what have we achieved ?
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2002-2007

• AGMs
• Cancer Voices training
• Actively involved in the development of a Patient
  Information Website
• Reviewed patient information leaflets
• Participated in Patient Information Workshops
• Built Good Links With Patient Advisory and
  Liaison Services
• Considered Carers Issues
• Worked with the Trusts to look at
• transport issues, chemotherapy services,
  pathology services and breast prosthetic services
• Road Show and information stands

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2005-2006

• Network Board Activity
• Involved in the consultation process on how
  cancer services are shaped in Dorset to achieve
  National Guidance
• Enabled services users to be heard at a strategic
  level
• Development of new services
• Staffing levels and other resources
• Members Peer Review Group Established
• Review Network guidance policies
• Communication of significant news
• Patient Information- development, delivery
  content and dissemination
• Holistic patient needs assessment
• Quality control of support groups
• Members Actively been involved in Peer Review
• Developed Network Guidelines on how professionals
  can involve cancer patients in shaping services.

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Key Achievements

• Developed a three year strategy!
• Peer Review Visit
• Raised our Profile
• Gained Recognition
• Gained Credibility
• The Peer Review team acknowledged the group as
  exemplary!
• Enabled the cancer patient and carers voice to
  be heard!

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Where do we go from here what are our future
challenges
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Future Challenges

• Continue to champion concerns and issues about
  cancer services
• how do we reach the service users who need their
  voices to be heard?
• We need to ensure that we are representative of
  the local service user population
• Sustaining the relationships weve established so
  far so that people will continue to be engaged in
  the user involvement agenda

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Future Challenges

• Expanding attendance in cancer site specific and
  cancer network meetings
• Maintain membership of the partnership panel!
• Marketing to attract new members
• Ensure people feel skilled and confident
• Ensure people feel valued
• Ensure people can see what we do and how their
  contributions help
• Continued funding for our activities and our
  facilitator to help coordinate these activities.

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Future Challenges

• Need to be accessible to and in communication
  with as many of the service users, their families
  and carers, and health professionals as possible
• Build long term links with all support groups
• Show evidence that by being involved we can and
  we do make a difference!
• We need to celebrate our successes
• But we need clear direction and focus for our
  activities

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The User Involvement Strategy

• Purpose
• To provide a clear vision for user involvement in
  cancer care
• - in all of Dorset Cancer networks organisations
  for all of their professionals, and for the user
  involvement group,
• To provide a clear direction and focus for
  Partnership Panels activities over the next
  three years
• To give the Partnership Panel a voice in the
  development of services
• To Inform the planning process taking account of
  service user views.

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The User Involvement Strategy

• Aims
• To ensure the cancer patients and their carers
  voice is heard and valued!
• To increase partnership working with
  professionals in developing and reviewing
  services
• To ensure patients and their carers receive
  appropriate cancer care through appropriate
  services, at the appropriate time, by the
  appropriate person
• To ensure all patients, carers and the public
  have access to relevant high quality, up to date
  information, in formats that meet their needs

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Dorset Cancer Network

• Thank you