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Tips on how to communicate with your healthcare provider

It is very important to communicate with your healthcare providers to get all the information you need about which examinations and treatments are available. You often have a choice in which treatment or examination you think is right for your child. Your healthcare provider can tell you about the pros and cons so you can discuss which option is best for your child. If a treatment is suggested, you usually don’t need t say ‘yes’ or ‘no’ right away. You can think about it at home or ask for another appointment. You don’t have to make these difficult decisions by yourself. You can do this together with your healthcare provider and you can always bring someone you confide in for support.

What if your healthcare provider isn’t properly informed about the Marshall-Smith Syndrome?

You can kindly refer them to the Standards of Care Marshall-Smith Syndrome. This describes what good care is for people with MSS. Healthcare providers and near ones of people with MSS have made these agreements together. The healthcare providers at the expertise centre AMC in Amsterdam are well informed of this standard of good care for MSS. Healthcare providers in other institutions may not be aware of this standard. They can find it in the library of the Dutch Healthcare Institute http://www.zorginzicht.nl or on the MSS Research Foundation’s website: http://www.marshallsmith.org. It is also important for the healthcare providers of the treatment centre in your area (who do not have extra knowledge on MSS) to communicate with the expert team at the AMC.