The accompanying folder supports you in living with a chronic illness in the long term. It offers you the opportunity to note what has been discussed, sort your documents and keep them within easy reach. It is also intended to give you suggestions about where and who can help you and how you can, for example, prepare for and follow up your appointments (see also what you need to know before, during and after the treatment appointment).
How was the portfolio created?
The accompanying folder was developed by a team of experts from different
disciplines (e.g. medicine, psychology, health sciences), those affected and
their relatives. The Johannesstift Diakonie gAG and the Tumor Centre Berlin
e.V. are the publishers of the accompanying folder.
We tested the accompanying folder:
Your opinion is still important to us: We are continually collecting your feedback and experiences with the accompanying folder.
With your help, we can update the folder regularly and tailor it even better to the needs of patients, relatives, and those treating and advising them. The folder is distributed to patients in health authorities, hospitals and medical practices, for example, and is mainly used in Berlin but also in other federal states.
Since the end of 2023, there have been translations or partial translations of the folder into easy language and some foreign languages (see download area). If the existing translation offerings are not sufficient, please give us detailed feedback on what you think is needed. We will check to what extent we can implement adjustments within our financial means.
Who is the folder for?
Patients and their relatives can bring the folder with them to all
appointments and use the folder to prepare and follow up. Patients and
specialists can use the folder to get an overview of the current situation
and the progression of the disease.
How is the folder structured?
The folder is divided into seven subject areas with brief information,
suggestions and tips. You can file documents and notes according to the
subject area. The folder contains sheets for recording your questions,
notes, appointments and data from your treatment or advisory team. In the
folder you will also find sheets for recording complaints, self-measured
values and medication. Checklists support you in your precautionary
planning. The last section summarises important addresses and websites.
How is the project funded?
The project is funded by the Senate Department for Science, Health and Care
and Sparda-Bank Berlin eG. It does not receive any revenue from advertising
or similar sources.
What happens next from 2024/25?
We are currently striving to perpetuate the accompanying folder project. In
addition to ensuring the financing of the folder, this also includes
ensuring that the folder becomes even better known and can be used by even
more patients and target groups. We will also check whether the 2024/25
folder can also be offered digitally in cooperation with health insurance
companies. Please visit our website regularly. We will keep you up to date
on when, where and how you can use the folder digitally.
How do I contact the accompanying folder team?
For example for orders, suggestions or questions:
Give us a call: 030 762 891 110
Mail us: begleitmappe@tzb.de
Your current general and health complaints, as well as your self-measured values are important for your treatment. It is therefore important that you keep a record of yourself, your illness and your treatment.
During the course of your treatment, you will be given regular records of your treatment. Keep these in a safe place for future reference. This includes your medication schedule.
If you have regular symptoms such as pain, it is important to write them down. This way, when you visit your doctor, you can describe exactly what you are experiencing and discuss what might help. You will find the form Health complaints in the download area.
It is often important for you to measure and record values yourself. For example, your blood pressure or body weight. You can use the form Self-measured values from the download area for this.
A medication plan will help you remember when, how much and how often to take your medicines. It is also important to keep track of any remedies you buy yourself, e.g. herbal supplements.
You can read about side effects and interactions in the leaflets that come with your medicines. Write down any questions you have and discuss them with your doctor.
You will often be given a medication plan by your doctors or after a stay in hospital. You can find a simplified example here. This is based on the standard national format in accordance with § 31a SGB V.
You will often also find a list of your medications in doctor's letters.
In the long term, regular follow-up examinations are important to monitor the success achieved after treatments. For tumor patients, these are the aftercare examinations. For this, you can also bring the notes about your health complaints..
There are many different ways to treat an illness. Also, the goals of treatment - what can and should be achieved - can vary. Discuss these regularly with your healthcare provider.
Treatments and examinations have different risks and benefits. You and your doctor will need to decide together what limitations you are willing to accept in order to plan your treatment. This is sometimes called " Shared Decision Making" (SDM).
Family or close friends can help you make difficult decisions. Decision aids may also be helpful.
Blood tests may be an important part of your treatment. Keep your laboratory findings in a safe place. These may include:
You will receive reports from your doctor on a regular basis. It is important to collect these as they will help in the long term management of your disease.
After hospital treatment or a specialist examination, you will receive a doctor's letter or case discussion. This documents diagnoses, test results and recommendations for further treatment. Make sure you get the doctor's letter to file in your folder.
You will usually receive the results of an examination in the form of a report, e.g. the result of an x-ray with the images on a CD (computer tomography or magnetic resonance imaging). Keep your reports in a safe place in case other doctors need them.
Ask your doctor if you would like a printed copy of the findings.
Also ask your doctor if there is anything in your documents that you do not understand. For example, you can ask to have terms explained to you.
Rehabilitation is designed to help you return to everyday life and/or live with your condition in the long term.
Outpatient rehabilitation: You are only at the facility during the day for treatment. This means that you do not need 24-hour medical care. Daily transportation must be arranged by the facility or privately.
Inpatient rehabilitation: You are usually at the rehab facility around the clock for two to four weeks. Intensive physical and mental therapy is planned with you and carried out.
Mobile rehabilitation: In certain circumstances, rehabilitation can take place in your home
Outpatient or inpatient rehabilitation may be an option for you after you are discharged from the hospital, for example. This is called aftercare rehabilitation. It usually starts within two weeks of your discharge from the hospital.
Assistance with organizing and applying for rehabilitation may be available from:
Your doctor at home, in the hospital or at the rehabilitation facility will request the rehabilitation treatment. This may need to be approved by your health insurance or pension fund.
Free, specialized programs, e. g. for mental or physical strengthening, will help you consolidate the gains you have made after rehabilitation and transfer them to your everyday life.
Acute and chronic illnesses may mean that you and/or your family need temporary or long-term assistance at home. You may also need financial support.
Your illness may also mean that you are temporarily unable to work or can only work part-time or in a limited capacity in the long term, or not at all. Depending on the severity and duration of your illness, you may be entitled to sickness benefit, unemployment benefit, or a special type of pension. This is called a reduced earning capacity pension (“Erwerbsminderungsrente”).
As a result of your illness, you may be entitled to various benefits from your health and long-term care insurance, the Federal Employment Agency, your pension insurance or the social security office.
Make sure you get comprehensive advice.
You can find an overview of the different
support, services and advice available and who
to contact here.
Information and calculations for the benefits to which you are entitled can be found in the care benefits help guide and in the online health insurance guide.
Aids are technical products or other objects that you can use yourself. Aids include e.g. wigs, compression stockings, shoe inserts, prostheses, wheelchairs, and hearing aids.
Remedies are non-medical medical services that are provided in person. They must be prescribed by your doctor and approved by your health insurance company. Remedy services include e. g. physiotherapy, occupational therapy, speech therapy or nutritional therapy or advice. You can find out more about these services in the section on improving quality of life.
During the course of an illness, you may sometimes no longer be able to take care of yourself and need help from or for others, e. g. for your children. If it is likely that care will be needed for more than six months, the care grade for what is required should be assessed.
Home nursing care consists of basic care, treatment care and domestic help. It must be prescribed by a doctor and approved by the health insurance company. It is provided for a short period of time.
Patients who require temporary intensive care can use a fully inpatient short-term care as a form of care. This may be used, for example, in the event of an excessive demand for home care or after a stay in the hospital.
The care degree determines which long-term care insurance benefits you can receive. The care degree depends on how severely your independence or abilities are impaired. There are five care degrees, ranging from minor to the most severe impairments.
To receive a care degree, you must apply for care services from your care insurance company. Specialist medical experts from your health insurance company will then come to your home. They will assess your care needs and determine which care grade you fall into.
There are various support services and forms of assistance available from the care insurance for family caregivers. These include, e. g. financial and/or in-kind benefits, as well as counseling services or free training courses on practical caregiving. To find out more, contact your care insurance provider or a care support center.
Depending on the nature of your disability, you may be able to apply for a severely disabled person's pass. With this pass, you can claim support services to help you cope with your everyday life.
The degree of disability is a classification ranging from 10-100 that indicates the severity of your disability. The assessment of your own GdB is carried out by bodies such as the pension office as part of a medical examination.
A disability is a health
impairment that is expected to
limit a person's participation
in society for more than six
months. For this, the degree of
disability must be at least
20.
A severe disability is a degree
of disability of 50 or more.
Those who meet this criteria can
then apply for a severely
disabled person's pass.
A disability pass states the degree of disability and sometimes also contain "flags". These indicate a walking disability or other restrictions. People with a degree of disability of at least 50 may receive a severely disabled person's pass.
People with disabilities often experience disadvantages in their daily lives. They can take advantage of disability compensation for this – e. g. reduced fees or free use of public transport, additional vacation allowance and protection against dismissal at work.
Support your physical and mental health with activities and therapies that you enjoy and that improve your wellbeing and quality of life. These services are called support services. Try some out to find out what works for you.
Many of these services are offered in clinics, rehabilitation and treatment centers or doctors' offices. Services for the home can be prescribed by doctors and are often covered by health or pension insurance.
Exercise, alone or in a group, can have a positive effect on the course of your illness, as well as on your mind and quality of life. Yoga, for example, can help you to relieve stress and recharge your batteries.
You can receive physiotherapy, occupational therapy or speech therapy at home or in doctors' offices.
Physiotherapy can help to reduce pain, make breathing easier, maintain or improve mobility and your general well-being.
Occupational therapy can help you cope better with everyday activities and maintain or improve your concentration.
Speech therapy can help to maintain or improve speech, language, voice and swallowing.
Illness or therapy can sometimes affect how food tastes and how well it is digested. A nutritionist can give you personalized recommendations for a balanced and more easily digestible diet.
Counselors or psychologists, for example, can help you cope with stress, worries, and fears. These professionals can also advise you on existential issues. If you have children, you can get support to help them cope with your illness.
Creative therapies such as art, music, writing and dance therapy can help you express feelings or thoughts that you may not be able or willing to talk about. Be creative with colors, pictures, sounds, melodies, and rhythms.
If you wish, our chaplain will contact you at the hospital and support you and your relatives. At home, you can contact a chaplain from your church community or the local church community. If you wish, you can also be supported by a visiting service from the community.
These services are offered in the clinic, in doctors' offices and in counseling centers.
Self-help groups often provide additional space for sharing experiences. People with the same illnesses and life situations can meet to exchange experiences and support each other with advice and help.
A wide range of art, music and movement activities are available. These include drama, dance or music therapy, yoga, painting, writing, cooking together, acupuncture – to name just a few. Creative therapies can help you to actively express feelings or thoughts in a variety of ways.
A serious illness can significantly change your life, either in the long term or very suddenly. It is important to make arrangements in advance to make things easier for you and your loved ones if this occurs.
A serious illness can significantly change your life, either in the long term or very suddenly. It is important to make arrangements in advance to make things easier for you and your loved ones if this occurs.
Use the "Checklist-My advance care planning". This will help you to complete your advance care planning documents step by step.
If you have a chronic illness, you may become less able to express yourself, so it is important to make arrangements and plans early on.
Advance care planning aims to ensure that you receive the medical and nursing care you want. It is a shared decision-making process that identifies your individual wishes. For example, you can set out limits for life-prolonging treatments. Advance care planning not only makes life easier for you, but also for your loved ones.
Care documents, such as advance directives and powers of attorney, are used to put your care wishes into writing. For example, they can be used to state your treatment wishes. This is particularly important if you are unable to make decisions for yourself. These documents can be changed at any time. Important advance care documents include an advance directive, organ donor card, a power of attorney and a will.
An advance directive is a document that lets you decide whether and how you want to be treated if you become unable to express your own wishes. You can also state your wishes for your care and where you would like to be cared for (e.g. at home, in a hospice or nursing home). It is important that you discuss your advance directive with your doctor.
You can also include information about organ donation in your advance directive. This can save lives. Please discuss with your doctor whether you are eligible to be an organ donor.
Here you can access the "Bundeszentrale für gesundheitliche Aufklärung (BZgA)" website to order information material and an organ donor card, or you can fill one out and print it directly from the website.
A power of attorney allows you to appoint someone you trust. They can make important decisions and carry out tasks on your behalf if you are unable to do so. This could include matters relating to your medical care or financial affairs.
A health care proxy allows you to name someone you trust to be appointed by the court as your legal proxy if, for example, you are no longer able to manage your medical or financial affairs. The proxy should act in accordance with your wishes and needs regarding, for example, whether you want to live at home or in a care home. The proxy is only used if a court has to make a decision about your care.
Care planning should include your will. A will can, for example, determine who receives your inheritance and specify how or where you would like to be buried. Taking care of your affairs and your estate can give you and your loved ones peace of mind.
In a serious emergency, you may no longer be able to voice your wishes, for example, on the question of whether you want resuscitation in the event of cardiac arrest. Emergency documents allow the emergency services to see at a glance how they should act in such situations. You can use them to enter details of your pre-existing conditions and medications, and specify which people should be notified. Emergency documents are binding for the emergency team and require your signature and the signature of your doctor.
Emergency documents at home: Key information can be kept, for example, on a note in a plastic box in your refrigerator. It can be helpful to put a note at your front door with information about the location of an existing emergency box or emergency directive.
Emergency card for travel: If you have an emergency while out and about, an emergency card containing the most important information, for example, about your medications, illnesses, phone numbers of people to be notified, whether you have an advance care directive and the location of your care documents can be useful. Keep it with you at all times, for example, in your wallet.
You can download templates for the various sheets in your folder here and print them out yourself in colour or black and white.
Tip:
We recommend that you use free translation services on the Internet if
the folder is missing translations.
If you do not understand a term, ask for a definition and have the
words explained to you.
The "Instituts für Qualität und
Wirtschaftlichkeit im Gesundheitswesen (IQWiG)" website,
for example, provides brief explanations of medical and scientific
terms.
Here you can also have your
doctor's letter or findings translated into simple language.
It can be difficult to distinguish between good and bad information
online. Trustmarks such as HONcode can help you judge a
site's trustworthiness. However, they are not a guarantee of
complete and correct medical information. Tips, checklists and
instructions on how to evaluate websites can be found here,
for example.
Important: Good information on the internet is not a substitute for
a conversation with your doctor. It only supplements it.
It can be useful to write down questions before the appointment and to make notes during a consultation. Alternatively, you can ask a close friend or family member to accompany you to important appointments. Feel free to use the sheets Your questions and Your notes.
As a patient, you are entitled to clear explanations of diagnoses and medical conditions. This includes information about the advantages and disadvantages of an examination or treatment. So if there is something you do not understand, ask a lot of questions and ask for more detailed explanations. Not understanding something afterwards can be very frustrating.
You can find a list of possible questions for your doctor, for example, here. You can find further questions in the blue guide "Patienten und Ärzte als Partner".
After a consultation or treatment appointment, it can sometimes be helpful to summarize in your own words what you were told about a diagnosis or treatment recommendation. This allows you to make sure that you have understood everything correctly and that you are aware of possible alternatives to your treatment.
These can support you in difficult decisions, for example, when faced with different examination or treatment options. You can write down the decision in question, the options available, and the information you still need to make up your mind. You can find templates for decision aids, for example here.
Important: These aids can help you prepare for a conversation with your doctor or relatives. It can also help to have someone from your family or a close friend accompany you to the appointments. Then you can decide together how to proceed.
Care support centers provide free information and advice to you or your relatives. They can provide support on topics such as care, care needs or possible assistance and services. You can receive advice by phone or in person at a local center. If necessary, the staff will also come to your home. You can find an overview of all care support centers in Berlin here.
You can download and print a detailed overview of helpful contacts with addresses, telephone numbers, websites and brief descriptions of the services they offer here in color or black and white.
Stiftung ZQP (Zentrum für
Qualität in der Pflege)
German
Federal Ministry of Health
Unabhängige
Patientenberatung Deutschland gGmbH
(UPD)
Care
support centers in Berlin
Kompetenzzentrum
Pflegeunterstützung (KPU)
Wege zur
Pflege
(Bundesministerium für Familie, Senioren, Frauen
und Jugend)
compass
private pflegeberatung GmbH
Berliner
Mobilitätshilfedienste
Berliner
Hausbesuche (Malteser Hilfsdienst e.V.)
Landessportbund
Berlin e.V.
Sport-Gesundheitspark
Berlin e.V. und Zentrum für Sportmedizin
Deutscher
Fachverband
für Kunst- und Gestaltungstherapie e.V.
(DFKGT)
Deutscher
Arbeitskreis Gestaltungstherapie / Klinische
Kunsttherapie e.V. (DAGTP)
Tumorzentrum Berlin
e.V.
Psychoonkologie
in Berlin (Tumorzentrum Berlin e.V.)
Netzwerk
OnkoAktiv e.V.
Onkomap - „Ihr
digitaler Onkolotse für Berlin“
Krebsberatung
Berlin
Krebsberatung
Berlin-Brandenburg e.V.
Krebsinformationsdienst
(Deutsches Krebsforschungszentrum – dkfz)
OnkoRat
Berlin e.V.
INFONETZ
KREBS (Stiftung Deutsche Krebshilfe)
Härtefonds der
Deutschen Krebshilfe
Berliner
Krebsgesellschaft e.V.
AG Lungensport
in Deutschland e.V.
Atemwegsliga
e.V.
Lungeninformationsdienst
(Helmholtz Zentrum München & Deutsches
Zentrum für Lungenforschung)
Deutsche
Lungenstiftung e.V.
Berliner Gesellschaft
für Prävention und Rehabilitation von
Herz-Kreislauferkrankungen e.V. (BGPR)
Deutsche
Herzstiftung e.V.
Deutsche
Diabetes Gesellschaft (DDG)
Deutsche
Diabetes-Hilfe (diabetesDE)
Sponsors:
Senatsverwaltung für Wissenschaft, Gesundheit
und Pflege
Sparda-Bank Berlin eG
Publisher:
Johannesstift Diakonie gAG
Tumorzentrum Berlin e.V.
Cooperation partner:
Beratungsstellen der Berliner
Gesundheitsämter
Project management:
Dr. med. Karin Barnard (Johannesstift
Diakonie gAG)
Authors:
Dr. med. Karin Barnard (Johannesstift
Diakonie gAG)
Dr. Annette Reinecke, M.Sc. (Tumorzentrum Berlin
e.V.)
Laura Schilz, M.Sc. (formerly Johannesstift Diakonie
gAG)
Antonia Repsch, M.Sc. (Johannesstift Diakonie gAG)
Concept, design, programming:
Meyer Misgin Media GmbH
Design:
Dipl.-Des.
Josephine Rank
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General right to object (Art. 21 para. 1 GDPR;
Section 25 DSG-EKD))
You have the right
to object, for reasons arising from your particular
situation, at any time to the processing of personal data
concerning you that is carried out on the basis of Art. 6
para. 1 sentence 1 e) or f) GDPR or Section 6 Nos. 1, 3, 4
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The controller within the meaning of data protection law
is:
Johannesstift Diakonie
gAG
Siemensdamm 50
13629 Berlin
kontakt(at)jsd.de
Executive Board:
Andreas Mörsberger (Board
Spokesperson)
Prof. Lutz Fritsche
Christoph Dürdoth
The responsible body has appointed a data protection
officer. Their contact details are as follows:
datenschutzbeauftragter-pgd(at)pgdiakonie.de
