As a cancer patient in Sweden, you have a number of rights and it is important that you are aware of them. On this page we will bring together the available information and links to deeper knowledge on the subject. More content will be added to the site gradually.
Podcast – Your rights in healthcare
Listen to our podcast below, where we talk about your rights as a patient and family member in healthcare. (In Swedish)
Right to a new medical assessment (second opinion)
The right to get a second opinion is enshrined in Swedish law, but in practice few cancer patients are informed about it. Only about 10% of cancer patients are informed about the important right to a second opinion, or new medical assessment as it is also called. Roger Henriksson, professor and consultant in oncology at Norrland University Hospital, says that an independent reassessment can be crucial for the patient.
He estimates that for up to 10-15% of patients in Sweden it can lead to a different diagnosis or treatment. As a patient, you should not feel embarrassed for asking the question. It is your right and it is about your safety. In cases where the healthcare system has made mistakes, doctors also learn something new that can help others.
As a patient with a life-threatening or particularly serious illness or injury, you have the opportunity to have a new medical assessment by another healthcare provider in Sweden.
Ask your doctor to send a referral to another hospital or healthcare provider. This can be done in different ways depending on the illness or injury.
- A medical team reviews the referral with X-rays and test results to make a medical assessment and recommendation for treatment, which is fed back to your doctor. Your doctor will then get back to you.
- You will be invited to a doctor’s appointment to discuss your illness or injury and receive recommendations for treatment. As a patient, you are entitled to reimbursement of any travel and accommodation costs from your region of residence.
- You can also send a self-referral to another hospital via the app Alltid öppet (Stockholm) or 1177 if you want a new medical assessment. In this case, you will pay for any accommodation and travel. You are invited to a doctor’s appointment where your disease or
The injury is reviewed and you receive a recommendation for treatment.
Questions & Answers
I have been to a doctor and found out that I have a terminal illness, but am wondering if the diagnosis is correct. Can I see another doctor?
You have the right to a new medical assessment in case of a life-threatening or particularly serious illness or injury. You can either discuss it with your doctor who will send a referral to another doctor within or outside your region. If the doctor sends you a referral, you are entitled to reimbursement of travel expenses. You can also contact another hospital and send a self-referral and pay for your own travel to the hospital.
Right to a contact nurse
The law states that you have the right to a permanent health care contact if you request it, or if it is deemed necessary for various reasons. So be sure to ask for it as it can make a big difference with someone who has a duty to monitor your care. This is particularly important in the case of cancer, where patients often have to see several doctors, and patients are often in a vulnerable position with little energy for anything other than the disease itself.
Right to information
In terms of information, accessibility to healthcare is very important. Even if you’ve had a long conversation with the doctor where lots of good information has been given, it’s not uncommon for questions to arise afterwards from the patient and family.
There should be someone at the reception/clinic who is easily accessible and can help answer the questions. All clinics that examine and treat patients with cancer must therefore have named contact nurses who can be contacted.
It is often an advantage if information is provided both orally and in writing, and the right to receive it is also enshrined in the Patient Act. Feel free to write down your own questions, for example for the interview with the doctor.
You may also want to bring a family member with you. Two people together often hear and perceive more than one. If you are too ill to receive the information yourself, it should be given to someone close to you.
Right to participation
The law states that care and treatment should, as far as possible, be planned and carried out in consultation with the patient.
As a cancer patient, you have the right to know first what the treatment options are in your case and then to be involved in discussing the best choice. You also have the right to know where to go for a certain type of surgery, for example.
It is not enough for the doctor to simply list the available treatments. You have the right to get help in evaluating them, and to know the advantages and disadvantages of different methods. If the doctor considers that there are several equivalent treatment options that can help the patient, the patient’s choice should be decisive.
Right to choice of health care
As a patient, you will now be able to choose where and by whom you receive care. You should also be able to influence the choice of treatments.
The new patient law gives the right to choose a health care center anywhere in the country, but also the right to choose an outpatient specialist anywhere. However, some regions still require a referral to see a specialist in another county.
Possibility to write a self-referral
Here’s how to do it:
- Find the clinic of the hospital or health care facility you want to apply to.
- Find the clinic on Alltid Öppet (Stockholm) or 1177 and fill in the self-referral form. If you do not have BankID, Freja eID+ or do not have a Swedish social security number, there are forms to use, check with the clinic you want to apply to.
Questions & Answers
What information do I need to fill in the self-referral form?
All relevant information related to what you are applying for must be included. This could be, for example, medical records, test results or X-ray reports. You can always find information from previous visits/treatments in your medical record on 1177.
All regions in Sweden have separate
medical record system so the hospital you send your self-referral to cannot automatically see your medical record. Record systems also differ between public and private actors.
Why can't I just email the hospital?
It is not possible to send a self-referral by e-mail, as it does not meet the requirements of the law.
Can I send a self-referral for X-rays and blood tests?
No. X-rays and tests can only be done at the discretion of a doctor.
I have sent a self-referral and had a recent visit to a hospital in another region and now I want them to perform surgery, am I entitled to that?
If the surgery is an outpatient procedure, you have the right to choose this. The Patient Act does not give you the right to choose inpatient care.
The home hospital in the region where you are registered will decide whether they can operate on you or send you to another hospital.
If you don’t receive your surgery within the 90-day guarantee, you can always contact your region and ask to be treated in another hospital.
How much does a doctor's visit in another region cost?
The patient pays the same patient fee as those registered in the region.
Right to a care plan
Every cancer patient has the right to an individual treatment plan. It should state who the responsible doctor is, where to go with questions, including the number of the contact nurse, and where to go in an emergency.
The care plan should also indicate the type of cancer, the planned investigations/treatments and their timing. The timetable may sometimes be provisional, but the reasons for this should be explained.
You have the right to a written care plan. A care plan includes setting goals, planning, implementing and evaluating your care. If you are not offered one, it is important to ask for one. It provides structure and makes it easier to see if something has been missed, both during the treatment and afterwards. Cancer often involves complex treatments and a personalized care plan is important for both patients and health professionals.
Right to read your medical record
You have the right to read your medical records. It should always say who made a journal entry and when it was made. If you want to read your medical records, ask your doctor. The record belongs to the health service and is the staff’s working tool, but you can always ask for a copy of it.
Right of relatives to receive information
If you are a family member of a person who is ill, you can ask to be informed about their condition and the care they are receiving. But it is up to the person who is ill to decide whether you should receive the information. Relatives should be informed if the person who is ill is unable to receive the information at all.
If you are not satisfied with your care
If you are unhappy with the way you were treated, the information you received or the care you received, it is usually best to first try to talk to the staff involved.
If this doesn’t help, or if you don’t want to talk to the staff on your own, you can turn to the region’s patient committee, sometimes called a board of trustees.
Patients’ committees exist in all regions and are independent of the healthcare system. You can contact Patientnämnden (the Patient Committee) both as a patient and as a family member and it is completely free of charge.
The Patient Committee also cooperates with the Swedish Health and Social Care Inspectorate (Inspektionen för vård och omsorg – IVO) and will inform the authority if there is something it should investigate.
We will continuously add more information to this page on rights. In the meantime, for the time being, you can read more at Cancerfonden where there is a lot of information.