Today was another big day. We met with Hugo’s paediatrician to discuss everything that’s happened from diagnosis to present day. Hugo’s paediatrician is the best doctor I have ever met. He really has gone the extra mile for us and helped us through the most difficult times of our life. He did things for us that no other doctor would have been bothered about and has been there for us every step of the way. So do I trust his opinion? Absolutely 100%.
Following our appointment with the regional specialist at QMC last month, Danny and I discussed transferring Hugo to GOSH. We felt the package of care for Duchenne boys over there was miles better than QMC. However, we made this decision based on our knowledge alone and with no input from our paediatrician. This was probably a mistake. After speaking to him today, I wouldn’t say our minds have being changed, but we are in a much better position to make an informed decision.
There were three things that stood out after talking to our paediatrician. The first being that if we transferred to GOSH, Hugo would be a little fish in a very big pond. There are not many Duchenne boys at QMC, meaning he may well receive much better care than he would at GOSH, where they have a much larger number of Duchenne patients, meaning less time for Hugo. The second thing was the pen analogy that our paediatrician used. He explained that we could buy a pen from a local shop, or buy the same pen from a well known department store in London. We end up with the same pen either way. Whilst GOSH has a great reputation and is very well known, they provide the exact same thing. Finally, we have another two boys to consider. By transferring to GOSH, if Hugo was to require emergency treatment, he would have to go to GOSH. Any operations or treatment he would need, would have to be done there. More patients, longer wait. If we stay at QMC, we would have a team of specialists within an hours journey who are equipped to deal with Hugo’s condition and because there aren’t as many Duchenne patients, Hugo will be treated quicker.
These are things that I had not taken into consideration until today’s appointment. I’m not going to lie, GOSH stood out to me more due to its status and reputation for being the best children’s hospital in the UK. I do want the best for Hugo, but I completely and utterly trust our paediatricians opinion, and he has a very strong working relationship with Hugo’s specialist at QMC. The two of them together are probably a much better team for Hugo than what GOSH could provide for us.
So where do we go from here? We have decided to keep Hugo at QMC for the next few months and see how things go. Our paediatrician is more than happy to make that referral for us whenever we request, but we have a great relationship with him and we feel, at the moment, that QMC is the best place for Hugo.