Patient support groups
For many patients, a cancer diagnosis is an existential threat that they are often suddenly confronted with and torn from their lives. "What happens now?" is one of the most frequently asked questions after the diagnosis. Self-help groups offer advice and support for those affected by those affected (and not only) in this situation. You can learn from the experience of other sufferers and receive valuable information and support on how to take the next steps.
The resolution of the cancer self-help organizations "Psychosocial support for people with cancer" from September 2009 states: "The support services offered by cancer self-help organizations should be included in care from the time of diagnosis. This primarily involves discussions with trained, equally affected employees of the cancer self-help organizations and authentic and patient-oriented information, both written and spoken, on living with the disease and, if necessary, disability."
Your path to self-help
As the Hubertus Wald Tumor Center - University Cancer Center (UCCH), we see it as a matter of course to support our patients in their contact with self-help groups. The contact details of the self-help groups cooperating with the UCCH and other supra-regional self-help groups can be found further down on the page.
A range of flyers and information material from the individual groups based in Hamburg and Schleswig-Holstein can also be found in the waiting areas of the Oncology Outpatient Clinic and the Central Contact Point at the UCCH. As the needs and direct cooperation with the self-help groups are also important to us, we offer special services, support with projects and events for self-help group leaders and members.
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Conversation and group management training
We offer communication training for self-help group leaders at regular intervals, in which dealing with stressful situations or "special" group members, group leaders and dynamics, as well as dealing with hope, grief and uncertainty are worked out together and practiced in role plays.
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Patient support group room at the UCCH
A room in the central contact point of the Hubertus Wald Tumor Center - University Cancer Center Hamburg (UCCH) is available for consultations with our cooperating self-help groups at fixed times.
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Joint projects with patient support groups
We also offer self-help groups active support in carrying out their own projects: For example, we are happy to advise on event planning and organize these in coordination with the self-help groups on our clinic premises or provide medical professionals as speakers. If you have ideas for a joint project, please contact us and we will work out together how we can implement it.
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List of cooperating patient support groups
Note that these are German-speaking groups. Please contact the groups directly to find out if consultancy in English is possible.
Aktion Pink Deutschland e.V.
www.aktionpink.deAllianz gegen Brustkrebs e.V.
www.allianz-gegen-brustkrebs.deAmyloidose Selbsthilfe
www.amyloidose-selbsthilfe.deAplastische Anämie & PNH e.V.
www.aa-pnh.deArbeitskreis der Pankreatektomierten e.V.
www.bauchspeicheldruese-pankreas-selbsthilfe.deback2life - Interessengemeinschaft stammzelltransplantierter junger Menschen in Hamburg
www.back2life-hamburg.deBRCA Netzwerk e.V. - Hilfe bei familiärem Brust- und Eierstockkrebs
www.brca-netzwerk.deBundesorganisation Selbsthilfe Neuroendokrine Tumoren e.V.
www.net-shg.deBundesverband der Kehlkopflosen e.V.
www.kehlkopfoperiert-bv.deBundesverband Prostatakrebs Selbsthilfe (BPS) e.V.
www.prostatakrebs-bps.deDeutsche Sarkomstiftung, regionale Patientengruppe, GIST Hamburg
www.sarkome.deDeutsche ILCO e.V. Hamburg
www.ilco.deDeutsche Leukämie- und Lymphom-Hilfe e.V.
www.leukaemie-hilfe.deDeutsche Stiftung für junge Erwachsene mit Krebs (TREFFPUNKT Hamburg)
www.junge-erwachsene-mit-krebs.deFörderverein für Knochenmarktransplantation in Hamburg e.V.
www.foerderverein-kmt.deFrauenselbsthilfe nach Krebs
www.frauenselbsthilfe.deKopf-Hals-M.U.N.D.-Krebs e.V.
www.kopf-hals-mund-krebs.deKraniopharyngeom-Gruppe Nord
www.kranio-nord.jimdo.comLungenkrebstherapie ZielGENau e.V.
www.zielgenau.orgMultiples-Myelom Selbsthilfegruppe Hamburg
www.plasmozytom-myelom-selbsthilfegruppe-hamburg.deNetzwerk Neuroendokrine Tumoren (NeT) e.V.
www.glandula-net-online.deNetzwerkStatt Krebs
www.netzwerkstattkrebs.deOvarSH - Selbsthilfegruppen Eierstockkrebs
www.ovarsh.deProMann Hamburg
www.promann-hamburg.deProstatakrebs-Selbsthilfegruppe Altona
http://www.prostataselbsthilfe.de/Prostatakrebs-Selbsthilfegruppe Hamburg
www.prostatakrebs-shg-hh.deProstatakrebs-Selbsthilfegruppe Heidekreis
www.prostatakrebs-sfa.deSelbsthilfegruppe nach Krebs Süderelbe
Selbsthilfe Speiseröhre Hamburg
www.speiseroehrenkrebs-hh.deSherpa-Initiative im Förderverein für Knochenmarktransplantation e.V. in Hamburg
www.foerderverein-kmt.deSHG Blasenkrebs Hamburg
www.blasenkrebs-shb.deSHG Hamburg - Leben ohne Schilddrüse
www.sd-krebs.deSHG Hautkrebs Buxtehude
www.shg-hautkrebs-buxtehude.deSHG Hautkrebs Hamburg
SHG Hirntumor-Betroffene
www.hirntumor-betroffene-hamburg.deSHG Lungenkrebs
www.selbsthilfe-lungenkrebs-hamburg.deSHG Prostatakrebs Diepholz
SHG Prostatakrebs Pinneberg
www.prostatakrebs-selbsthilfe-pinneberg.de/SHG Prostatakrebs Verden
Vereinigung Akustikus Neurinom e.V.
www.akustikus.deVulvakarzinom-Selbsthilfegruppe e.V.
www.vulvakarzinom-shg.de
UCCH self-help group spokesperson
The UCCH self-help group spokespersons are the first point of contact for questions about self-help, maintain contact with the various self-help group representatives throughout the network, work with us to organize the task forces and take part in audits and hearings.
In the download document, we would like to introduce you to the current self-help group spokespersons Heide Lakemann and Jürgen Martens. We asked them both a few questions about their personal journey into self-help and their wishes for the future.
Coordination
PD Dr. med. Andreas Block, MBA
Avin Hell, Consultant for communication and patient involvement
Further information on the services offered by the self-help groups can be found at:
ucch@uke.de