Hello Friends!
As promised, this the account of my recent 'consultation' with my Parkinson's PGMP. For abbreviations used, please see box in sidebar.
{back story}
- diagnosed with Parkinson's Sept 21
- told I would be seen F2F every six months
- there would be regular contact with a PN.
- it is now 30 calendar months since my last F2F
- appointments constantly rescheduled
- I was last seen by the PGMP F2F in Sept 23
- All appointments since have either been cancelled or happened over the phone
- I have involved the help of my local Senedd AM as to why provision of services is so poor in my area
Telephone consultations are not productive for assessing
the patient's current level of progression because you need to see the
individual to assess physical deterioration levels.
My last appointment in Dec 2025 was cancelled
with less than 24 hours’ notice and rescheduled for last Tuesday 3rd
Feb at 4:00 PM. It was at this time I contacted my Senedd AM
All consultations begin with 10 minutes spent
refreshing the PGMP with my medical history and medication regime. He does not review notes ahead of time. Telephone consultations are generally limited
to 30 minutes but Tuesdays was less than 25 minutes.
I had prepared notes to help me, but I was not
asked any questions regarding my current level, nor given the opportunity
to ask questions.
The PGMP is hell bent that I must move into
either an assisted living facility or care home as soon as possible. This from
a “professional” who has not seen me in person for more than two and a half
years, and has no idea how my symptoms are progressing, or what my needs
are.
His argument is that I live on my own, and
because I get no support from family, community, neighbours or friends, no one checks in on me, no one
visits or telephones me, and {according to him} I have lost confidence and do not attend any community events to socialize, that by moving I will make
new friends, regain my confidence and begin “socializing” with said new
friends.
He is blinkered and determined to the point
that I no longer wish to speak with him.
Not that I can speak to him, for he is so fixated he does not allow me
to speak or say why I disagree.
Here’s why I do not want to move:
1.
I am perfectly happy where I am.
2.
My confidence is not missing!
3.
I do not want to make new
friends because:
a.
I don’t like big groups
b.
I prefer my own company to a
room full of people who are not my Tribe.
c.
I am not a social butterfly
d.
I have physical limitations
that add to my discomfort when in social situations
4.
He has not considered the
negative impact that moving would have on my wellbeing, especially the stress involved.
5.
My local council will do
everything in their power to keep individuals living in their own home by
providing support as needed to facilitate independent living.
I am not stupid, I know that at some point in
the future assisted living or a care home will be a necessity, but when I am
ready I will know and it will be my decision.
He does not intend to adjust my medication at this time to alleviate my tremors. I am expected to tolerate them. He did not offer an acceptable reason for this, so I can only assume it is punishment for noncompliance over moving, or
because I have involved my Senedd Assembly Minister in my concerns, especially
given what followed next.
He actually referred to my age, pointing out that I am old {I am 68} and should accept this!!!! WTH?????? Bang out of order, inappropriate ageism!!! His final point was that if I feel so strongly,
then perhaps I should involve my Member of Parliament. My thoughts are that he
is annoyed with me and this is his veiled attempt of letting me know his disapproval. I
don't think he was expecting me to reply as I did when I said “no need to worry
about that I've already asked my assembly minister to look into things for me”
I really do feel as if I am being punished and going to be made to suffer.
I have spent a lot of time contemplating the best way forward, and by starting to collate advice.
I cannot be involuntarily forced into care as long as I have my “mental capacity”.
I have requested the correct protocols for
1.
obtaining full transcripts of
my records since Sept 2021, when I was first diagnosed
2.
requesting a second opinion
So there you have it. I wish it was better news but it is what it
is and I must deal with it or give in. it isn’t going to be easy, I am being punished
for involving my AM, and right now I have a PGMP who is determined to make me
stressed when that is the last thing I need.
To end on a happy note, there was a tap at the door yesterday afternoon and I opened the door to find the local courier with a parcel for me, but I was not expecting anything. Imagine my immense joy and delight to find that my dear cousin had sent me flowers internationally! Such a thoughtful and kind thing to do! Aren't they beautiful?
Until next time
Debbie xx
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