What Should I Ask?

Taking Control Ways to take control
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Sorry this is long, please read to the end as that’s where I ask my questions.

I have a Zoom appointment with my Parkinson’s General Medicine Doctor this coming Tuesday 3 Feb. IF it goes ahead, and is not cancelled yet again, it will be 30 months since I have been seen in person face to face. I think this is disgraceful, but I am now in a position that I have not been seen for so long by him that I don’t know what to ask or say. For two and a half years now, I have been more or less drifting and self-treating and I have deteriorated in many ways since my last face to face. I no longer know what symptoms are Parkinson’s and what might or might not be something else.

I think this Zoom appointment is scheduled to be no more than 30 minutes. That’s not a lot of time to cover everything that needs to be addressed. If this appointment is anything like previous ones, ten minutes will be wasted by me having to clarify and repeat my medical history pre Parkinson’s, my medication regime, and including my medical history since my last appointment. This, imo, are things he should bring himself up to speed on BEFORE he phones me.

I have drawn up a spreadsheet of symptoms and my interpretation of how bad/good/do not have on a scale of 1 to 10 as pertains to me and also prepared a document of bullet points that I wish to cover and have emailed it ahead.

I think, I hope I’ve covered everything I want to address, but am going to be seriously {mad as a rabid dog} assertive if I do not get enough air time. I think he will be mad at me because in December I reported the inadequacies of my region to my Senedd representative and he is now fully on board with me.

So, my fellow Parkies, is there something specific that you think I should be asking? I know it’s not easy to say because you don’t know how my smorgasbord of symptoms but you might just suggest something I have overlooked or not thought of.

oh, and btw, my letter of appointment is a standard letter issued for FACE TO FACE appointments, NOT Zoom appointments. There is NOTHING, not diddly squat, to indicate that this is Zoom not F2F. I found this out by chance, so imagine if I had not found out and showed up at reception with my meds AND THE LETTER for a non existent appointment. The NHS is in enough trouble as it is without incompetent secretaries making this kind of mistake.

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Got morning,

Found this document that I am going to use for my next consultation, hope you find it useful too.

Good luck

Dawn

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Thank you for sharing, @Artgeek.

You’ve clearly put a huge amount of thought and effort into preparing for this appointment – that in itself is really positive! Having a symptoms spreadsheet and sending notes ahead is exactly the right thing to do, especially with limited time.

You might find this page helpful before Tuesday – it has a clear list of questions, which can help you prioritise what matters most to you in a short appointment.

Some people also find it useful to start the appointment by saying what they most want to get out of it (even just 2–3 key points), ask directly what symptoms are likely Parkinson’s-related vs what should be checked separately, and clarify the next steps and how to get support between appointments.

You can also call our free and confidential helpline if you want to talk things through with our trained experts: 0808 800 0303 (available 9am and 6pm Monday to Friday, and 10am and 1pm on Saturdays).

You’re absolutely not wrong to feel upset about the delays and confusion, and it’s okay to be firm and advocate for yourself. Hopefully others in the forum will also chip in with ideas you may not have thought of! You’re not alone in this.

I really hope Tuesday gives you the space you deserve to be heard. Keep us posted with how it goes :blue_heart:

Parkinson’s UK Moderation Team

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Thank you so much Dawn, I feel this is going to be very useful!

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Thank you, Candice, I shall most definitely make good use of that sheet. Yes, I will keep you up to date on how it goes.

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