It's the small things....

Many of my own health complications resulting from Duchenne's would be lot easier to deal with if the small things were done correctly.

For instance I need suction via a mini tracheotomy and in the beginning when it was first installed back in 2001, I had convenient bottles of sterile water. This water is used to clear the secretions left in the suction tube after my chest has been cleared. The bottles were easy to order and made such a huge difference, even though its only sterile water.

Sadly the pharmacy have changed supplier and I now get my water in little plastic cartons which have a metal seal on them. To get into it my mother has to use the sharp end of pen. This is a major pain in the behind and all the convenience has gone. I cannot get the suction tube in the cartons, so we pour the water into old empty bottles which used to contain sterile water back in 2006. It would mean alot if we could go back to the bottles and its one small thing that I would be very grateful for.

Another issue is the gloves used for suctioning. The health authority used to provide plastic single use sterile gloves until it decided they weren't appropriate in a hospital setting. Even though I use them at home. My mother was trained to suction using these gloves and they are perfect for my needs. When they were withdrawn we had to buy our own gloves to ensure I could still have suction. The health authority gave us the alternative of a pack containing two huge gloves, which would mean wasting an extra glove every time I suction. I was not willing to purposely waste things or use something we were unfamiliar with. I am happy with the single use gloves and would love it if we were provided with them on the NHS.

Theres many more small things to contend with. If only there was handbook to help advise us!

Take care duchennemen!