The meeting raised many talking points of interest and highlighted that there was a lack of consistency in some areas of the treatment patients are receiving.
Many aspects of self-infusion were discussed in length, one couple shared 10 years’ experience of self-infusion, one positive being independence has meant they have mostly been unaffected during lockdown/shielding, so they do recommended that others give it a try. A point which was discussed is having a partner who can administer the medicine was an important aspect, some felt that not having a partner reduced their willingness to take the risk to self-infuse.
It was stated that all patients should have a yearly review to check the infusion procedures are being correctly followed. This highlighted an area which was not being carried out with some saying they have had only one review in the past 3 years, and less than 5 reviews in 10 years.
- Is it something you would be prepared to try with the appropriate training?
- If you are independent, do you receive a yearly review?
One member found issues with self-cannulation due to filter blockages and how they have experienced up to 3 filter changes per infusion, whereas other members have only had 3 filter changes in the last 5 years. It was suggested that the cause could be due to the reconstitution of the drug; filter blockages shouldn’t be an issue if it’s been mixed correctly.
- Is this something you have found to be an issue?
This discussion has since sparked an online poll to see if filter blockages are a problem for others within the Pompe community experience - See Poll here
Thank you to all within the Pompe Community who contributed to the ZiP meeting, if you have any questions about the meeting or would like additional information please contact us on hello@pompe.uk or on Facebook.