My guide to safe care

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My guide to safe care

Communication

Follow-up

Examination

Laws and regulations

Treatment

More information

The aim of this guide is to increase the possibility for you to contribute to safe and secure care. It contains guidance and concrete advice on how as a patient you can participate in your care and treatment. The guide can facilitate communication between you and personnel that you come into contact with at, for example, medical centres, hospitals or dental clinics. It also provides information on what the legislation says about patients’ rights as well as references to where you can obtain more information about health care.

This guide belongs to Name: Address:

Telephone: Mobile: E-mail:

My health care contacts Here you can write the name, telephone number, e-mail address, etc. of any contacts you have within health care, medical care and dental care.

Participation leads to safer care This guide constitutes a part of the joint work to increase the patient’s participation and make health care safer. Upon the Government’s commission, this guide has been drawn up by the National Board of Health and Welfare in close cooperation with the Swedish Association of Local Authorities and Regions (SALAR), the Association of Private Care Providers, the Swedish Association for Non-Profit Health and Social Service Providers (Famna), 1177 Vårdguiden (Health care advice online and on the phone), the Medical Responsibility Board, the Swedish Patient Insurance LÖF, Apotekens Service AB, patient’s advisory committees, patient organisations, pensioners’ organisations, staff organisations and professional bodies.

This publication is protected in accordance with the Copyright Act. The source should be stated for quotes. Reproduction of images, photographs and illustrations requires the author’s permission. The publication is available as a PDF on the website of the National Board of Health and Welfare. The publication can also be produced in alternative format upon request. Questions on alternative format should be sent to [email protected] Article number 2015-6-64 Revised 01/06/2015, the changes relate to the new Patient Act.

Ten tips for your contribution to safe care 01. Be prepared before your health care appointments. 02. Provide information about your problems and your habits. 03. Participate in decisions concerning your care and treatment. 04. Ask about your ongoing care and treatment. 05. Ask for written information to help you to remember what has been said. 06. Feel free to have a close relative or friend accompany you, if this makes you feel more comfortable. 07. Familiarise yourself with your medication – how it works and the reasons for taking it. 08. Wash your hands frequently to reduce the risk of infection. 09. Avoid smoking if you will have an operation. 10. Inform the medical personnel if you think something is wrong.

Why have I received this guide? This guide is for people who have or may in the future have more frequent contact with health care services. The aim is to increase the possibility for you to contribute to safe and secure care. It contains guidance and advice which can help you to: • Obtain the information you need. • Provide medical personnel with the information they need. You also get to find out which laws and regulations govern your rights as a patient within health care, medical care and dental care. At the end of the guide there is information on where to find out more about health care. Your knowledge and your questions are important! By being prepared and informed about what to expect prior to and after examination and treatment, you can contribute to preventing or reducing the risk of error. You can help to ensure that you receive safer care by, for example, asking about something you do not understand or informing medical personnel if you think something is wrong. It is better to ask too much than too little. MY GUIDE TO SAFE CARE SOCIALSTYRELSEN

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Contents Communication 05 Providing and receiving information

05

Inform about your problems and habits

06

Inform about the medication you take

07

Examination 08 Before you can be diagnosed and have treatment prescribed

08

Test and examination results 09

Treatment 10 Different decisions before treatment 10 Care plan and permanent medical contact

12

Treatment with medication 13 Operation 14 Local and general anaesthetic 15 Good hygiene protects against infections

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Follow-up 17 When no more appointments are booked for you

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Assistive devices and other support in your daily life

18

Laws and regulations 19 Responsibilities of the health care services

19

Medical records are an important part of safety

22

If you are dissatisfied 24

More information 27 Some information sources 27

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Communication Communication provides the basis for safe and secure care. Providing and receiving information A good meeting and communication between you and the medical personnel provide the basis for safe and secure care. It is important to share knowledge of your problems and your habits with the health care services. The care you receive should be based on respect for your right to make your own decisions. Through a trustful discussion, you and the medical personnel can work together to decide how your care can be as good as possible. The health care services have the medical knowledge and responsibility, but you should also be informed on how you can participate. Inform the medical personnel whether you wish to receive information in a particular way or if you will need support during the meeting. You have the right to receive information in a form which enables you to understand the content. If you have difficulties understanding or speaking Swedish, you can request an interpreter. If you are deaf, deaf-blind or hearing-impaired, an interpreter will be offered to you.

The health care services’ obligation to inform The health care services are obliged to provide you with information which is adapted to you as an individual. You will receive information on your state of health and the methods available for examination, care and treatment. The dental care services will provide you with information on your dental health and the treatment methods available for you. Dental care personnel will also inform you of the cost prior to treatment, as well as if the costs change and the reasons for this.

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Communication 

Inform about your problems and habits Before the personnel can make a diagnosis and prescribe treatment, they must find an explanation for your problems. By using your knowledge of your habits and your health, the personnel can form an initial picture of what is causing your problems and symptoms. Therefore you should describe them in as much detail as possible. Prepare yourself before your appointment with the help of the questions in this section. Which questions you receive will depend on what your problems are and whether your contact with the health care services is planned or an emergency. Your current health problems • What problems do you have? • How long have you had the problems? • Have you noticed anything which worsens or eases the problems? • What do you think caused the problems? • Do you have any allergies? • What are your habits with regard to tobacco, alcohol, food and exercise? • Do you have problems with your balance or do you fall often? • Do you have any infection? • Do you use any assistive devices? Previous illness or care • Have you been seriously ill? • Have you been admitted to hospital? • Have you had an operation or received any other treatment? • Have you, for example, had operative surgery for a prosthetic limb or cardiac valve? • Are there any hereditary diseases in your family?

Notes

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Communication

Inform about the medication you take In order for your treatment to be as safe as possible, the personnel need to know whether you use any medication or herbal remedies Previously prescribed medication, certain herbal remedies and non-prescription drugs may strengthen or reduce the effect of new medication prescribed to you. Too many different types of medication or certain combinations of medication can pose risks. Inform the personnel about any medication which you cannot take. You can ask your doctor or the person prescribing the medication to provide a so-called ‘medication list’ which shows which medication you should take. At the pharmacy, you can obtain a list of the prescriptions saved in the pharmacy’s computer system (‘Mina sparade recept’/‘My saved prescriptions’). However, please note that this list may include medication which you should no longer take!

Be prepared before your visit There are different ways to prepare for your visit to the medical centre, clinic or hospital. Think about what you want to discuss and feel free to write down any questions to make it easier for you to remember to ask them. Or you could ask someone to write them down for you. Write a list of the medication you are taking or bring the medication you use, including herbal remedies and non-prescription drugs. Inform the personnel if you have an ‘ApoDos’ (Apoteket’s service for multi-dose packaging of medication).

Notes

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Examination Examinations can provide answers to the cause of your problems. Before you can be diagnosed and have treatment prescribed The discussion often needs to be supplemented with several tests and examinations in order for the personnel to be able to provide a diagnosis and prescribe treatment. Some tests and examinations require you to prepare yourself in different ways. You will normally receive verbal and written information. If you do not receive this, you can ask: • What is the purpose of the test? • What is the purpose of the examination? • Are there any risks? • Are there any other options? • When will I be examined? • Who should I contact if an appointment is not scheduled for me? • How can I prepare? • Is there anything I should be aware of afterwards? If the medical centre or clinic you are visiting cannot perform the tests or examinations, you will be referred to a specialist clinic, a laboratory or a radiotherapy department.

What is a referral? A referral is a message from, for example, your doctor to another unit, expressing that you require a specific form of assessment, examination, testing or treatment. It is important that you are informed of why a referral is being sent to another unit, where it is being sent, how long it will take before an appointment is scheduled for you and who you can contact if no appointment is scheduled or you do not receive a reply.

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Examination

Test and examination results In connection with an examination or tests, you will be informed of when and how you can find out the results of the examination or tests. It is common for many different parts of the health care services to collaborate on examinations and tests, so there is a risk that examination and test results do not reach the personnel responsible for your care. You can help to reduce the risk of this if, for example, you ask: • When and how will I receive the results? • Who has access to my results within the health care services? • Who should I contact if I do not receive the results or if I have questions? • What happens in the next stage? Inform the personnel if you do not understand the information you receive. You can also request information in writing. Are your personal details correct? The personnel will ask you for your name and personal identity number in order to ascertain that the medical records and the test or examination results they have are yours. This is done in order to avoid mixing up patients who have the same or a similar name. Please feel free to remind the personnel if they forget to ask.

Feel free to have someone close accompany you It can be comforting to have a close relative or friend with you during your examination or to receive important information concerning your care and treatment. This way, someone else has heard what has been said, and you will have someone to discuss it with after the visit.

Notes  

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Treatment The treatment normally requires a lot from you. Different decisions before treatment When the cause of your problems has been identified, the person responsible for your care can make a decision regarding the kind of treatment that can be offered to you, who can administer the treatment and when it can begin. You have the right to receive information concerning the kind of treatment that you may receive and whether you can choose between different methods. You will also receive information regarding the aim of the treatment, how it works, any side effects or other risks and which results you can expect in the short and long term. The personnel may only offer treatment which is medically justifiable and which conforms to science and so-called ‘well-tried experience.’ Participate in decisions concerning your care and treatment Your care will be carried out in consultation with you. You therefore need to receive information which enables you to participate in decisions surrounding your care and treatment. Ask questions if there is something you do not understand or if you would like to receive more information. Inform the medical personnel if you think something is wrong.

The health care services’ obligation to inform The health care services are obliged to inform you about the various available treatment options, possibilities for you to choose the health care provider and executor within government-funded health and medical care and how long you need to wait for treatment. If you have a life-threatening or particularly severe illness or injury, you will have the opportunity to receive a second opinion in your own or another county council. Within dental care, the personnel are obliged to inform you of the methods of treatment which are applicable in your case.

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Treatment

Questions you can ask If you have questions about anything concerning your treatment you can, for example, ask: • What treatment options are available? • What are the advantages and disadvantages? • What will happen if I do not receive treatment? • Does the treatment involve any side effects or risks? • How do I know if the treatment is working? • When will the treatment start? • How long will the treatment take? • What should I consider or do for the result to be as good as possible? • Who can I contact if I have any questions? • Where can I find more information on my illness and treatment? When you change care unit When the responsibility for your care is transferred from one department to another, it may be the case that some of the information concerning you, your care and your treatment is not passed on. We therefore advise that you do not assume that the new personnel have received all the information. Provide important information to the personnel and inform them if you have any questions or if something seems to be wrong.

Increased safety through written information Many different people and departments may be involved in your care and treatment. The greater the number of participants, the greater the risk of confusion and misunderstanding which can affect your security and safety. Request written information, write down what is said or ask someone to help you with this in order to reduce the risk of misunderstandings.

Notes

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Treatment 

Care plan and permanent medical contact To ensure that your care is as safe as possible when you are discharged from hospital and require further help, care planning should be conducted and a care plan should be drawn up. You, a close relative or friend or both of you together should participate in the care planning. In addition to the care plan, information from the hospital should include details of • who has been responsible for your care and treatment • your current health status and how you perceive this • any risks which your health status may involve. There are also other situations in which the health care services are obliged to draw up a care plan in consultation with you,for example, in the event of compulsory psychiatric care. If you require measures from both the health care services and social services, the county council and municipality can draw up an individual plan together with you which deals with how your needs should be fulfilled. Within dental care, patients who require more extensive treatment have the right to receive a written treatment plan. This should include information on prescribed treatments, whether you can receive compensation for the measures and the prices of health care providers. Permanent health care contact If you have many contacts in the health care services, the unit head can appoint a permanent health care contact for you so that your care is as safe and secure as possible. The appointed person may, for example, help you to coordinate different measures and procure contacts. You may also make a personal request for a specific member of personnel to be appointed as your permanent health care contact. If you receive compulsory psychiatric care, you have the right to have an aide who can, for instance, help with personal questions during the compulsory care.

Notes

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Treatment

Treatment with medication If you are being treated with medication, you should be informed of the reason the medication has been prescribed for you, how it works, the size of your dosage, how and when you should take it and for how long. You will also need information on any possible side effects of your medication and as to whether food, drink or other medication can influence the effect. With knowledge about your medication, it will be easier for you to detect any reaction on your part which is contrary to expectations, as well as any side effects. If you have been admitted to hospital or are being cared for in a special residence or at home and the personnel administer medication to you, it is advisable to mention if • any medication looks different to what you are used to taking • you receive a different quantity of medication than what you are used to • the medication is administered at a different time than usual. More about medication You can find more information about medication on: www.fass.se Information about medication approved in Sweden. In ‘Min Fass’ (‘My Fass’) you can collect information on, among other things, the medication you use. www.lakemedelsverket.se/allmanhet Information on medication that has the same effect. www.tlv.se Information on the cost of medication and articles of consumption. www.1177 Vårdguiden Information on medication for the treatment of various illnesses.

The same medication can have a number of different names The medication on a prescription does not always have the same name as that dispensed by the pharmacy. If equivalent medication which costs less is available from another manufacturer, the pharmacy will offer it. The medication which is offered must contain the same substances and have the same effect. Sometimes the medication cannot be exchanged, and in such cases this is noted on the prescription. You may oppose the exchange, in which case you must pay the difference between the cheapest medication and that which is indicated on the prescription. MY GUIDE TO SAFE CARE SOCIALSTYRELSEN

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Treatment 

Please feel free to ask the personnel at the pharmacy if you are unsure of what applies with regard to your medication. Follow-up of your medicinal treatment It is important that both you and the person responsible for your care follow-up how you use your medication and its effect. You may request a review. This involves going through how you feel, which symptoms you have and the medication that you are taking. You will also discuss the effects of the medication and whether there have been any side effects. Following completion of the review you will receive an updated medication list. If you are assigned a new health care contact or if you are admitted to hospital, the personnel need to go through your medication. This involves establishing which medication you have been prescribed and which medication you are using. You will receive information on changes and the reasons for these, as well as an updated medication list.

Take care of your teeth and your oral hygiene Many medicines cause dryness in the mouth, which increases the risk of cavities in your teeth. It is particularly important to brush your teeth regularly and take care of your oral hygiene when you are sick. It is advisable to drink water if you are thirsty.

Operation Operations are normally carried out in hospitals, community hospitals or specialist clinics. Many minor operations are carried out during the day – this is called ‘outpatient surgery.’ Leading up to an operation, you will receive information on the procedure, but you may also ask questions. You need to know why you are having an operation and what you should do before and after the operation. Ask, for example: • Is there anything I should know or think about before or after the operation? • What can I do for the operation to go as well as possible? • Does the operation entail any risks? • What results can I expect? • How long is the recovery period? • What should I do with regard to my medication in connection with the operation?

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Treatment

Review your habits To avoid complications following an operation, you may need to change your habits. It may, for example, be necessary to perform certain exercises, either on your own or with the help of an occupational therapist or physiotherapist. Before or after certain operations you may need to change your smoking and eating habits.

Avoid smoking if you will have an operation If you abstain from smoking 4–8 weeks before and 6 weeks after an operation, your wounds will heal quicker and you will have an easier recovery. You will also reduce the risk of, for example, infection in your surgical wound and pneumonia. Do not hesitate to ask for support to stop smoking. More information can be found on www.enrokfrioperation.se

Local and general anaesthetic Some operations require different forms of local or general anaesthetic. To avoid risks when administering your anaesthetic, the personnel must be aware of whether you • are allergic to anything • are taking medication • have dentures, loose teeth or body piercing in, for example, your mouth or on your tongue • have previously been under general anaesthetic, and if so, how you reacted. Before the operation, you can ask about the different anaesthesia options and their advantages and disadvantages. You could also ask how you will feel after the operation, for example, if you will be in pain or feel ill. Do not hesitate to ask questions about your concerns regarding the anaesthesia. Find out who you can contact when you are at home again, for example, if you feel pain or other problems following an operation.

Inform the medical personnel of any pain or discomfort Ensure that medical personnel is aware if you are in pain and where it hurts so that they can help you in the best manner. You have the right to be free from pain and other discomfort as far as possible. Inform the medical personnel if you need pain relief. 15 MY GUIDE TO SAFE CARE SOCIALSTYRELSEN

Treatment 

Good hygiene protects against infections The personnel should follow certain rules in order to prevent infection. It is advisable to be aware of these rules and remind the personnel if you notice non-compliance with the rules. Among other things, the personnel should • have short-sleeved work clothes • not wear watches or jewellery on their hands or forearms • disinfect their hands before and after every direct contact with a patient • use a disposable apron or a protective gown and disposable gloves if there is any risk of contact • with, for example, blood or urine. Before certain examinations and treatments, for example, an operation, you will receive information on how you should prepare by showering and washing yourself with a special disinfectant agent.

Clean hands reduce the risk of infection Wash your hands with soap and water after going to the toilet and before you eat. Dry your hands with paper towels. Cough and sneeze into the crook of your arm, not into your hands.

Notes  

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Follow-up Follow-up is an important part of your responsibility. When no more appointments are booked for you When you are discharged from hospital or no more appointments are booked for you at the medical centre or other clinic, you should be aware of the things you need to bear in mind. You need to, among other things, know what you can expect in the future and how to best manage your own care. Is there anything you can do to avoid further problems? For example, you can ask: • Is there anything I should be aware of in the future? • Is there anything I should avoid doing due to, for example, the medication which I am taking or other treatment which I have undergone? • Who is responsible for repeat prescriptions of my medication? • What should I do if I have similar problems in the future? In this case, who should I contact? • Can I receive advice on how I should exercise or change my lifestyle? • Are there any patient associations or support groups that I can contact?

Share your experience and perceptions You can contribute with your experiences and perceptions of the health care services in different ways, for example, by keeping a diary of your experiences and informing the personnel of both positive and negative aspects. You can also utilise the opportunity to influence health care services if you receive a questionnaire concerning your opinions and experiences.

Notes

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Follow-up 

Assistive devices and other support in your daily life If you have a disability, you may need assistive devices which make your daily life easier and safer. Assistive devices and other support may also be required as part of your treatment or rehabilitation. Following treatment in hospital or in outpatient care, you may require different forms of support to ensure that your daily life is as safe as possible. This could be, for example, home medical service, home-help service, mobility service or other assistive devices. Ask the personnel that you have contact with, a counsellor or a district nurse how to apply for different measures. Regulations for assistive devices may vary The county council, the region and the municipality should offer rehabilitation and assistive devices. The possibility of receiving a specific assistive device may vary as every county council, region or municipality takes their own decisions and conducts their own procurement of assistive devices. Some assistive devices are free and you need to pay for other assistive devices. You can borrow certain assistive devices free of charge and you can rent some assistive devices. It is often doctors, occupational therapists, district nurses, physiotherapists and speech therapists who prescribe assistive devices.

Information on assistive devices The health care services are liable for informing about the assistive devices available for persons with a functional impairment. When different assistive devices are available for persons with a functional impairment, patients should be given the opportunity to choose the option they prefer. Patients should receive the chosen assistive device, if taking into account their needs and costs of the assistive device, it seems to be justifiable. (Chapter 3, Section 1 and Chapter 7, Section 2 of the Patient Act and Sections 3 a and 3 b of the Health and Medical Services Act).

Notes  

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Laws and regulations Good and safe care is a fundamental requirement of the legislation. Responsibilities of the health care services Those responsible for your care and treatment must follow laws and other provisions. The laws are decided by the Riksdag. Provisions are drawn up by, among others, the Government and the National Board of Health and Welfare. The fundamental obligations of health, medical and dental care are found in the Patient Act, the Health and Medical Services Act, the National Dental Service Act, the Patient Safety Act, the Patient Data Act and the Public Access to Information and Secrecy Act. The following is an overview of the patient’s standing in these acts. Goals for health, medical and dental care The goal of health and medical services is to ensure good care on equal terms for the population. Care should be provided with respect for the equal value of all human beings and for the individual human being’s dignity. Those with the greatest need of health and medical care should be prioritised. The goal of dental care is good dental health and dental care on equal terms for the entire population. (Chapter 1, Section 6 of the Patient Act, Section 2 of the Health and Medical Services Act, Section 2 of the National Dental Service Act) Can the obligations be appealed? Sweden has no legislation on patients’ rights within health and medical care. It is therefore not possible to appeal to the court if you are dissatisfied with the exception of, for example, the right to view your medical records and certain decisions pertaining to compulsory care. However, the legislation which regulates the patient’s standing is highly governing. The health care services themselves and national follow-up measures ensure that the goals and requirements for good and safe care are adhered to. The Health and Social Care Inspectorate (IVO) checks that organisations and personnel follow laws and provisions. (Chapter 7 of the Patient Safety Act)

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Laws and regulations 

Good care The requirements for good health and medical care entail, among other things, that • your need for security in care and treatment should be fulfilled • care should be easily available • your entitlement to self-determination and integrity should be respected • good contacts between you and the personnel should be promoted • your need for continuity and safety should be fulfilled • hygiene should be good. Care and treatment should, as far as possible, be designed and conducted in consultation with the patient. (Chapter 5, Section 1 of the Patient Act, Section 2 a of the Health and Medical Services Act, Chapter 6, Section 1 of the Patient Safety Act) Good dental care Dental care should be managed so that it fulfils the requirements for good dental care. It should be of a good quality, have a good standard of hygiene, and emphasis should be placed on preventative measures. Among other things, it should • fulfil your needs for security in the care and treatment • be easily available • respect your entitlement to self-determination and integrity • promote good contacts between you and the dental care personnel • as far as possible, be designed and conducted in consultation with the patient • provide information to you on your dental health and the treatment methods available. (Sections 3, 3 a and 3 b of the National Dental Service Act) Freedom of choice within primary care and other outpatient care Primary care and other outpatient care should be organised so that you (if you are covered by a county council’s responsibility for health and medical care) have the opportunity to, within or outside this county council, choose executor of government-funded outpatient care. (Chapter 9, Section 1 of the Patient Act, Sections 4 and 5 of the Health and Medical Services Act) Permanent health care contact You should be able to feel safe and secure and your care should be as coherent and well-coordinated as possible. You have the right to get a so-called ‘permanent health care contact,’ who can help you in a number of different ways. 20

You also have the opportunity to choose a permanent doctor contact within primary care. MY GUIDE TO SAFE CARE SOCIALSTYRELSEN

Laws and regulations

(Chapter 6, Sections 1,2 and 3 of the Patient Act, Sections 5 and 29 a of the Health and Medical Services Act) Information which you can understand The health and medical care personnel should provide information concerning • your state of health • the examination, care and treatment methods available • the assistive devices available for persons with functional impairments • when you can expect to receive medical care • the expected care and treatment process • essential risks of complications and side effects • after-care • methods for preventing illness or injury • the opportunity to choose treatment option, permanent doctor contact and health care provider and executor of government-funded health and medical care • the opportunity to have a second opinion and permanent doctor contact • the health care guarantee • the opportunity to receive information from the Swedish Social Insurance Agency on care in another EEA country or in Switzerland. The information should be customised. If you cannot receive the information yourself, as a rule it should be given to a close relative or friend. Within dental care, there is an obligation to inform you of your dental health and the treatment methods available. Dental care personnel will also inform you of the cost prior to an examination or treatment, as well as if the costs change and the reasons for this. (Chapter 3, Sections 1, 2, 4 and 6 of the Patient Act, Section 2 b of the Health and Medical Services Act, Chapter 6, Section 6 of the Patient Safety Act, Sections 3 b and 4 of the National Dental Service Act) Choice of treatment When several alternative treatments exist which conform to science and welltried experience, the person responsible for your care should assist you in your choice of treatment. You should receive the treatment you have chosen if it is considered as justifiable taking into account your illness or injury and the costs of the treatment. (Chapter 7, Section 1 of the Patient Act, Chapter 6, Section 7 of the Patient Safety Act) 21 MY GUIDE TO SAFE CARE SOCIALSTYRELSEN

Laws and regulations 

Second opinion If you have a life-threatening or particularly severe illness or injury, you will have the opportunity to receive a second opinion. You will be offered the treatment which the second opinion may result in if 1. the treatment conforms to science and well-tried experience, and 2. taking into account the current illness or injury and the costs of the treatment seems to be justifiable. The person responsible for your care will assist you in getting your second opinion within the same or a different county council. (Chapter 8, Section 1 of the Patient Act, Section 3 a of the Health and Medical Services Act, Chapter 6, Section 7 of the Patient Safety Act) Contact and care within a set period County councils should offer their residents a health care guarantee. This means that within a set period you will have • contact with primary care • an appointment with a doctor within primary care • an appointment with specialised care • planned care. The health care guarantee does not regulate whether care should be given or what kind of care a patient may receive. (Chapter 2, Section 3 of the Patient Act, Section 3 g of the Health and Medical Services Act)

Medical records are an important part of safety The aim of keeping patient medical records is firstly to contribute to good and safe care. Patient medical records should contain all the information required for good and safe care. They should contain, for example, details of the information you have received and the decisions which have been made concerning your care and treatment. (Chapter 3 of the Patient Data Act)

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Laws and regulations

Your right to view the medical records The main rule is that you have the right to view your own medical records. If it is permitted to make the medical records available to you, in whole or in part, you may view them on site or receive a copy. You may have to pay for any copies. Ask someone to explain anything that you do not understand. If you feel that any information in the medical records is inaccurate or misleading, this should be noted in the medical records. You can speak to the person responsible for making the notes. Your right to view your medical records is regulated in different laws, depending on whether your care is public or private.

A denied request can be appealed Within the public care sector, you may request to receive a written decision if you are not permitted to view your medical records. You can appeal the decision at the administrative court of appeal. In the private care sector, the person responsible for the medical records should, if it is considered that the medical records or any part of the records should not be made available, transfer the matter to the Health and Social Care Inspectorate (IVO). If IVO also denies the request, you may appeal this decision to the administrative court of appeal.

Many units may need your medical records Your care and treatment may involve contact with several different areas of the health care services. To ensure that your care is as safe as possible, several different units which participate in your care may therefore need to view your medical records. However, as a main rule, you are able to decide whether or not your medical records should be transferred between different departments. (Chapter 4 of the Patient Data Act, Chapter 5, Section 1 of the Patient Act) Your information is protected by confidentiality Information about your health or other personal matters may not, as a general rule, be made available to, for example, other health care providers without your consent. (Chapter 5, Section 1 of the Patient Act, Chapter 6 of the Patient Data Act, Chapter 6, Sections 12–16 of the Patient Safety Act, Chapter 25 of the Public Access to Information and Secrecy Act)

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Laws and regulations 

Definition of health care provider and health and medical care personnel In the legislation we sometimes refer to the health care provider’s responsibility and sometimes to the health and medical care personnel’s responsibility. The term ‘health care provider’ refers to a government authority, county council, municipality and any legal entity or private company which runs health and medical care. The term ‘health and medical care personnel’ refers to, among other things, anyone with a professional qualification for a role within health and medical care, personnel working in a hospital or other care institutions and who contribute to the care of patients. Certain personnel within, for example, pharmacies, emergency service centres and health care advisory services are also considered as health and medical care personnel. (Chapter 1, Sections 3 and 4 of the Patient Safety Act)

If you are dissatisfied As a patient, you always have the right to give your opinions on care. In this way you can help to make health care safer. If you feel you have received the wrong care or treatment, in the first instance you should consult the clinic or ward where you were treated. They are liable to investigate what has happened. If you have received a care-related injury, they should explain to you what they will do in order to prevent this from re-occurring. You can also contact the Patients’ Advisory Committee or submit a report to the Health and Social Care Inspectorate (IVO). Activities of the Patients’ Advisory Committee In every municipality, county council or region, there are one or more patients’ advisory committees. They may also be referred to as ‘ethics committees.’ They are independent and unbiased bodies. You can contact them if you have any questions, opinions, complaints or suggestions with regard to the health and medical care run by county councils or municipalities, or according to agreements with these. The same applies to dental care that is run or financed by the county council. The Patients’ Advisory Committee will listen to you, investigate and suggest solutions and contacts. Contact details can be found in the telephone book or on the respective websites of the municipality, county council or region. 24 MY GUIDE TO SAFE CARE SOCIALSTYRELSEN

Laws and regulations

Information from and ethics committees of the association for private dental care providers in Sweden (Privattandläkarna) If you have questions regarding dental care, are looking for a dentist or wish to submit a complaint about a member of the trade association Privattandläkarna, you can contact Privattandvårdsupplysningen (private dental care information). There you can often receive help, advice and guidance directly. Complaints are handled by a regional ethics committee. The regional committee’s decision can be appealed to the central ethics committee. More information can be found on www.ptl.se. Activities of the Health and Social Care Inspectorate (IVO) Complaints concerning health and medical care can also be reported to IVO. You do not need to specify or know who made the mistake or what caused the injury. IVO will attempt to determine the cause of the error and what the health care provider needs to do in order to prevent re-occurrence. As a general rule, incidents which occurred more than two years ago are not investigated. If the health care provider does not remedy the shortcomings, IVO may, for example, issue so-called ‘injunctions ’or prohibit continued operations. IVO may also request that qualified personnel be subject to a probationary period of three years. If the investigation shows that the person is clearly unfit to exercise their profession, IVO can request that the person’s license be revoked without a probationary period. Probationary periods and revocation of licences are decided by the Medical Responsibility Board. More information on how you report a complaint concerning health and medical care can be found at www.ivo.se What is a care-related injury? A care-related injury refers to suffering, bodily or psychological injury, sickness or death resulting from the care received and which could have been avoided. (Chapter 1, Section 5 of the Patient Safety Act)

Information in the event of a care-related injury If you sustain a care-related injury, the health care provider should, as soon as possible, inform you about • the fact that an incident has occurred which has led to a care-related injury • what they intend to do in order to prevent the re-occurrence of a similar incident • the possibility of reporting a complaint to IVO • the possibility of requesting compensation, and • the activities of the patients’ advisory committees. (Chapter 11, Section 2 of the Patient Act, Chapter 3, Section 8 of the Patient Safety Act) 25 MY GUIDE TO SAFE CARE SOCIALSTYRELSEN

Laws and regulations 

As a rule, the health care provider should also inform you if a report has been submitted to IVO concerning an incident which led to or which could have led to a serious care-related injury (lex Maria). You should then also be given the opportunity to describe your experience of the incident. If the information cannot be given to you, it should be given to a close relative or friend. (Chapter 3, Section 5 of the Patient Safety Act, SOSFS 2005:28 ) Opportunity to participate The health care provider should offer patients and their close relatives or friends the opportunity to participate in the work towards patient safety. (Chapter 11, Section 4 of the Patient Act, Chapter 3, Section 4 of the Patient Safety Act)

Financial compensation If you wish to apply for financial compensation for a care-related injury, you should contact the insurance company with which the health care provider has its patient insurance: • For care financed by the county council, you should contact the Swedish Patient Insurance LÖF, website: www.patientforsakring.se. • For other health and medical care, you should contact the health care provider to find out which insurance company they are registered with. • If the health care provider does not have patient insurance, you can contact the Swedish Patient Insurance Association, website: www.pff.se. • If your injury was caused by certain medication, you should contact the Pharmaceutical Insurance, website: www.lakemedelsforsakringen.se. Report to the Equality Ombudsman (DO) You can file a complaint with the Equality Ombudsman if you feel you have been discriminated against and this is related to your sex, transgender identity or expression, ethnicity, religion or other belief, disability, sexual orientation or age. You can contact the Equality Ombudsman on telephone number: 08-120 20 700. More information and the report form can be found at www.do.se. Trainee personnel In a hospital, for example, you may be asked for permission to allow trainee health care personnel to participate in your examination or treatment. As a patient you can help trainees to gain practical experience, but you always have the right to refuse. 26 MY GUIDE TO SAFE CARE SOCIALSTYRELSEN

More information Here you will find more useful information for patients, relatives and close friends. Some information sources Before, during and after your contacts with the health care services, you may wish to know more about, for example, your illness, different treatments, current waiting times, the results of the care and how to make contact with others who are suffering from the same illness. Care advice around the clock – www.1177 Vårdguiden (Health care advice online and on the phone) On the website www.1177.se you can receive advice and acquire knowledge on health and medical care, ask questions anonymously and receive a personalised response from doctors or nurses and find health care services throughout Sweden. Via the e-service ‘Mina vårdkontakter’ (‘My care contacts’) you can also contact your clinic for various matters. The website includes information on • illnesses and health problems, examinations, treatments and medication • medical centres or equivalent throughout the country, compare the accessibility and view different quality assessments from patients • the patient’s rights and how health and medical care works in Sweden. There are cartoons for children about various examinations and treatments. You can also find special theme sections with in-depth information on teeth, cancer, the body, children and parents, pregnancy, life and health, as well as advice on travel and vaccinations. The website www.1177.se is the joint website of county councils and regions, with information which is easy to understand and which has been subject to quality control. Ungdomsmottagningen på nätet (the online youth clinic) – www.umo.se The website www.umo.se is for all youths in Sweden between the ages of 13 and 25 who have questions about sex, health and relationships. Here you can find up-to-date information which has been subject to quality control. Visitors to the site can also submit anonymous questions to ‘Fråga UMO’ (‘Ask UMO’). 27 MY GUIDE TO SAFE CARE SOCIALSTYRELSEN

More information  

Health care advice on the phone In most county councils, you can call the health care advisory services on the general telephone number 1177. On this number, experienced nurses are available to answer questions, assess care requirements and give advice or information on who to contact. Medical centres can also give advice over the telephone. In the case of a serious illness or injury, you should dial 112 for the emergency services. Nationell Samverkan för Psykisk Hälsa (National Partnership for Mental Health) – www.nsph.se National Partnership for Mental Health, NPMH (or NSPH) is made up of a network of organisations for patients, users and next of kin within the psychiatric field. The contact details of everyone who is a part of the network are available on the website. Rare diagnoses The National Board of Health and Welfare’s knowledge database on rare diagnoses contains information on diseases or injuries experienced by no more than one hundred persons per one million inhabitants and which lead to profound functional impairments. Patient associations Patient associations, organisations for the disabled and associations for clients and relatives do voluntary work and offer information, support discussions and other activities. You do not need to be a member to contact them. Addresses for various associations can be found on the following websites: • www.1177.se • www.hso.se • www.nsph.se You can also ask the personnel to help you to find local patient associations. Current waiting times – www.vantetider.se If you would like an estimation of how long you may need to wait, for example, for a visit or planned examination or treatment, you can visit the website ‘Väntetider i vården’ (‘Waiting times in the health care services’). Here you can view waiting times for medical centres or equivalent and various types of specialist care. All county councils and regions participate and the waiting times are updated at least once per month.

28 MY GUIDE TO SAFE CARE SOCIALSTYRELSEN

More information

Open comparisons As a part of the health care services’ efforts to improve their results and security, data from, for example, various national registries and examinations is gathered and published. Comparisons are made between county councils and sometimes also various units, for example, medical centres. These so-called ‘open comparisons’ are published on websites, including: • www.socialstyrelsen.se • www.skl.se • www.socialstyrelsen.se/jamfor • www.1177.se Nationell Patientenkät (National Patient Survey) Patients’ experiences and opinions of the health care services are an important basis for the development and improvement work of medical care. The National Patient Survey is a continuous survey of the quality experienced by patients. The written survey is sent to people who have recently been patients in, for example, primary care or specialised outpatient or inpatient care. The results are used to develop and improve health care. They are also a basis for comparisons of the quality in different units. Results and comparisons can be found on www.1177.se and www.skl.se/nationellpatientenkat. Vårdbarometern (the Health Care Barometer) – www.vardbarometern.se Citizens’ attitudes to, as well as knowledge and expectations of Swedish health and medical care, are measured in regular telephone interviews. Every year, roughly a half per cent of the adult population is interviewed. Nationella Kvalitetsregister (National Quality Registries) – www.kvalitetsregister.se National quality registries contain individualised information on problems, diagnosis, treatment and results within health and medical care, dental care and welfare. Before your details are entered into a quality registry, you must give your consent and you will receive information on how the details will be used. By being in the National Quality Registries, you contribute to improving health care services. The higher the number of participants, the better the results.

Your opinion is important At some point you might be invited to respond to the National Patient Survey or the Health Care Barometer. By answering the questions, you will provide the health care services with a valuable basis for improvement. 29 MY GUIDE TO SAFE CARE SOCIALSTYRELSEN

Notes