Your understanding touched me. Thank you.
I rang the Consultant's secretary today. She's on holiday and all the poor woman in her office could say was that she remembered me ringing last Monday but that they are so short staffed that she would have to look through a mountain of paper to find my original query! I will call again tomorrow and do as you suggest, this time asking for an appointment with either the consultant or the PD nurse.
I called choose and book only to find that there are ' no appointments' The pain clinic have put me on a list and say they will call me when they have an appointment. Again, as you suggest, I will call them again and ask if they have any cancellations.
I am just beginning to realise how important it is to look after my own needs and how easy it is to be prescribed the conventional Co-beneldopa or similar and then be sent on your way, imagining you will have so much support around you. Yeh right!
I used to be a manager in the NHS and I am not averse to putting on the pressure. But I find, even though I can assert myself, it's a very different matter when you are a patient!
I worry for those that will fade into the background, as you say. But even with my awareness not to let that happen, one gets tired and I have started having moments of accepting my lot, thinking I am being unrealistic,
I'm back on track again now! Getting my second wind!
But just to add, our area advisor for Parkinsons UK has been a great help but he's been on holiday for the last few weeks, so unavailable.
Thanks for the suggestion to call the help line and good luck to you also.