Being faced with a new diagnosis (or the possibly of a new diagnosis) for a child can be overwhelming, and knowing where to turn to for help makes all the difference. Never be afraid to reach out for help and advice and trust your parental instincts if you feel something is wrong.
This is a lesson we have learned along our own path and something the Little Echoes founder Tracey always says to all parents who are not sure. Her family has gone through the diagnostic process in two countries and noticed the differences in how certain conditions are managed and even diagnosed. The family focus is however on how to seek help here in Sweden. The Little Echoes team hopes to create a useful library of resources and advice, and put it into the once place for you.
This page is an ongoing process, and if you feel we could add information, please do not hesitate to contact us with ideas. This is your organisation and we very much value our member experiences and input
General Health and Diagnosis
Sometimes a diagnosis is given very soon after birth, in which case you will usually be kept in the hospital until initial tests are over (as was in our own case in the UK) You will then be referred to the relevant team of professionals who will support you. At this point you may be given the opportunity to speak with a Genetic Counsellor who can answer any questions you may have.
The system here is really quite confusing, with some organisations such as BUP and Prima accepting self- referrals without the need to go through your usual Dr. If your child is at school, the nurse can make referrals for you if you suspect a life limiting or life threatening illness or a disability.
Generally speaking, if you have any health concerns about your child, perhaps the first step would be to speak with the nurses or a paediatrician at your local BVC (for developmental concerns up to age 5) or Vårdcentral (for illness)– they can then usually write a referral to the relevant diagnostic team.
BVC (Barnavårdscentral) – This is where you take your baby (from age 0-6) for vaccines, well-baby clinics, growth and development check -ups, and monitoring.
Please note: if your baby is sick, you should not take them to the BVC as they do not deal with illness. In this instance you should take your child to the hospital or your local vårdcentral. You can also call 1177 for advice and also the location of your nearest health-care provider at that time of day
Vårdcentral – This is basically your ‘primary care’ facility where you can make appointments to see a family Dr, general practitioner and organise to have blood tests taken. You can click the link to find the one closest to where you live. You will usually need to complete some paperwork to register.
Habilitering (habilitation/rehabilitation) – You will usually be referred to a Habilitering centre after a diagnosis is made and you have a medical certificate. If you already have a certificate, you can contact the centre yourself. The most important thing to note is that you must have a medical certificate as proof of diagnosis. Here you can expect to meet with a social worker who can help you with issues such as school placement, assistance in school, and form filling for financial assistance. You will also meet with Speech and Language, Occupational Therapy and Physiotherapy. Some centres also have a Nutritionist, Leisure Educator, Nurses, Orthopaedics and Dr; these services are also generally free of charge
A care plan will be formulated with your input. From here you may also be given information on the Disability Information Centre where you can self-refer for counselling or education classes (in Swedish)
Here are 2 useful PDF’s (in English) to give you more information on services:
BUMM (Child and Youth Medical Clinics) – Specialist clinics for children and adolescents up to age 18. It is usually faster and easier to get an appointment if you have a referral, but you can contact your nearest clinic yourself. Usually, you can go here if you suspect problems with development or growth, if your child has stomach problems or urinary problems, or chronic diseases which cannot be treated at your local health centre (vårdcentral), for example, an allergy, asthma or eczema.
Clinic list for the Stockholm area
Child and Youth Mental Health – These clinics also have the facilities to receive children and young people aged 0-17 years for the assessment and treatment of mild to moderate mental illness. Examples include; headaches and stomach aches, anxiety and depression, or aggressive behaviour. Click the link to find your nearest clinic.
Försäkringskassan (Social Insurance Agency) – This is the benefit awarding organisation and where applications are sent for financial assistance for many different types of social security. The most relevant here for parents would be barnbidrag & vardbidrag.
Vårdbidrag (Care Allowance) – Care allowance is a benefit for parents who need to care for a child with a disability or chronic illness. The rate will depend on the amount of extra care your child needs and their diagnosis. Your consultant or paediatrician should give you the medical information/certificate you need to help you to answer the questions.
Unfortunately, we have been unable to find a useful link for information in English. Applying for this type of benefit should be guided by your social worker.
Disability Policy & Law
Socialstyrelsen (The National Board of Health and Welfare) – A Government Agency which falls under the Ministry of Health and Social Affairs.
LSS – is an entitlement law and which allows for supplementary support for persons with significant and long-term functional disabilities. For example, the right to personal assistance, housing etc. and is (generally) free of charge. The amount of help you will receive is determined by diagnosis and need.
Home Adaptions - Bostadsanpassning
Equipment and Aids