Our latest research project looked at the information needs of those who are newly diagnosed with MS and those who support them. Appropriate information around the time of diagnosis is important as many people know little or nothing about MS when they, or a loved one, are diagnosed. Alternatively, they may know someone who has MS and assume that everyone's experience is the same.
This research provides information about what is most important to people around the time of diagnosis and will allow us to develop better resources for people newly diagnosed with MS in the future. It also highlights to health professionals the information preferences and needs of people with MS and should allow them to work more effectively.
Key findings were:
Neurologists and MS specialist nurses were the key providers of information around the time of diagnosis
The need for information changes over time, not always in a predictable way
Information should be offered in stages or layers, so that a person can choose how much information they receive on a particular topic at any particular time
Positive, practical, up to date information is important
Information tailored to the needs of an individual is useful
Information should be delivered in a variety of formats
The evidence base, or lack of evidence, should be made clear
Information can be empowering but too much information, or information at the wrong time, can be detrimental
Some people need support to use certain information, for example, when choosing a disease modifying treatment
Charities play an important role, including signposting to other organisations
Information was lacking in some areas especially on benefits and local services
We are only able to continue providing information to people with MS thanks to the support of generous donors like you. Thank you for helping to fund our free helpline and we look forward to updating you again soon.
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