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

3. 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

4. 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

5. Levels of Involvement 6 5 National rep Peer review CHI Cancer voices training required Regional rep Network board meetings Executive group PPIF’s partnership panel link Cancer voices training required 4 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 2 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)

6. Activity & Key Achievements Why and Where are we actively involved?

7. Partnership Panel Representation Within Organisations 2003-2004 Department of Health Dorset Cancer Network Dorset and Somerset Strategic Health Authority Executive Meetings Site Specific Meetings Breast Chair Mr Tony Skene Upper GI Chair Dr Virginia Laurence Dorset Cancer Network Steering Group Urology Chair Mr John Rundle Dorset Cancer Research Network Steering Group Lung Chair Dr John Miller 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 Voluntary Organisations Secondary Care Trusts 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

8. 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 Urology Lung 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 Hospices Primary Care NHS Trust Private Hospitals Cancer Care Dorset Poole Hospital NHS Trust (Cancer Centre) Bournemouth and Poole Teaching PCT PCT Harbour Lewis Manning House 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

9. 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

10. So what have we achieved ?

11. 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 Trust’s to look at: transport issues, chemotherapy services, pathology services and breast prosthetic services • Road Show and information stands

12. 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.

13. 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!

14. Where do we go from here & what are our future challenges

15. 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 we’ve established so far so that people will continue to be engaged in the user involvement agenda

16. 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.

17. 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

18. The User Involvement Strategy • Purpose • To provide a clear vision for user involvement in cancer care - in all of Dorset Cancer network’s organisations for all of their professionals, and for the user involvement group, • To provide a clear direction and focus for Partnership Panel’s 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.

19. 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

20. Dorset Cancer Network Thank you