As previously reported our survey in 2016 was initially being used to support the patient and carer perspectives of living with short bowel syndrome (SBS) and other types of intestinal failure.
We initiated this report to support the approval process for a potential new drug for those on HPN with SBS / Intestinal Failure. We wanted to ensure the patient and carer voice would be heard. Sadly the initial process was halted. We continued to prepare the results in the hope that we can use this information once a new process is outlined and possibly to support any further research in this area.
PINNT continue to advocate that patients must have information to make an informed decision in relation to the potential introduction of growth hormones.
This belief does not negate clinical advice and guidance; always discuss your own care and treatment with your own healthcare professionals.
PINNT continues to work with professional bodies / groups to, where possible, provide your perspective and to hopefully have a united voice.
Here is the report: PINNT-Short-Bowel-Syndrome-Survey-2016.pdf
If you would like to receive a printed copy please let us know.