Internet research and rare illnesses
We encourage our clinicians (doctors, nurses and allied health professionals) to work together with patients and their families to make well-informed judgments based on local and international guidance, supported by their training and experience, so that the best care and treatment decisions can be reached based on what is right (at that time) for individual patients.
We support our patients and their families to access and research information about health conditions and latest available treatments on the internet. However, we ask that this information is treated with some caution, as much online information can be unverified and unmoderated and may not be specifically applicable to an individual patient's care.
The NHS (and NUH) cannot offer every possible treatment that may be described on the internet or via social media (including treatments available in other countries in other health systems).
Our clinical teams will endeavour to signpost patients and families to appropriate online resources, support groups and clinical trials where these are available.
We understand that being diagnosed with a rare illness can be very frightening for patients and their families. Information on rare conditions is often extremely limited and can leave patients and carers feeling isolated.
We recognise the importance of good communication between patients and clinicians under these circumstances. Very often patients can become experts in their condition, through their own research. Our clinicians will endeavour to work in partnership with patients to share, exchange and discuss all available knowledge. We will do all we can to offer and support the best, evidenced-based information to our patients and their loved ones so that the right decisions about care and treatments can be made.