"My parent has motor neurone disease"

My parent was diagnosed with MND in Feb this year. In March they had an operation to have a PEG tub inserted into their stomach at POW hospital as they were struggling to eat food. Unfortunately, no one told us, including the gastro specialist, neurologist, or surgeon how we go about feeding my parent via the PEG tube. We assumed that we would pick them up from the operation and be shown how to feed them.

However, when I picked my parent up I was told that we needed to see a dietitian first, and to do that we needed to have a referral from a neurologist (who is very difficult to see because they are so busy). We took my parent home with no ability to use the tube to feed them until we chased up all the referrals and paperwork, which was very stressful. This could have been avoided if we were told ahead of time. Adding to this stress, was a trip planned for a couple of weeks after the operation in Adelaide and Perth (5 week trip). Despite best efforts, we could not get an appointment with a dietitian before the trip, so we had to do our best to get my parent to eat normal food whilst on holiday for 5 weeks.

After we returned to Sydney, we were able to get my parent booked in to see a dietitian and a hospital stay where they could be monitored getting fed via the PEG tube. Mark has also been very helpful in checking my parent's wound and showing us how to care for their PEG tube etc.

Since that drama, we have been set up with the Prince of Wales Outpatient Palliative Support Care Clinic and this team has been fantastic. They have numerous practitioners that can assist my parent, which saves us so much stress. Prior to getting set up with this team, our experience was challenging in terms of having so many doctors and specialists all over the place that don't talk to one another or send referrals to each other. I was having to repeat my story to each practitioner over and over again, and chase up documents/referrals to send to one practitioner to another. Now that we have access to the palliative care team, these issues have been resolved! Thank you so much! All the team can talk to each other without us having to do this. What a blessing!

Everyone in the team are kind and patient and agile to the ongoing development of the disease that is constantly changing. Medications and tactics are ever-evolving, and we really appreciate that the team can do home visits. My parent is not well enough to go in person to check-ups so we really are grateful that the team can come to us. That has relieved a lot of distress for my parent. We are comforted to know that everyone in the team cares, and is doing their best. We know that no-one has the magic cure for my parent, but it is so powerful, as a carer, to just feel listened to with compassion. I thank all the members of the POWH outpatient Palliative Care team with all my heart.