MPN Voice
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Change, don't you hate it?

Some people face a family tragedy by setting up a charity or doing sponsored events to make something good come out of something bad. Others want to kick out and hurt everyone they can possibly find to blame, except themselves.

We have suffered the latter; a campaign of hate against our County Hospital, encouraged by the media for a long running story.

The hospital has lost funding and has been cherry-picked of the best departments including Haematology, where we had built up trust and a relationship with the team of Doctors and specialist nurses, and met others with the same condition.

I got an appointment eventually and had my first visit to a satellite clinic in the local cottage hospital with a visiting doctor from another hospital. It was strange to sit with antenatal and other patients. The auxillaries did the routine stuff and a phlebotomist took bloods. The doctor seemed unsure and suggested unnecessary, extra bloods by the GP, though my results remain stable and have been checked 4 monthly for years, 'if in doubt do more tests.'

No one knew which forms for chemo drugs, so I was back and forth to pharmacy until I got angina, and then no-one knew where to find the right forms. At least the doctor had not left. The senior pharmacist had to check the doctor's registration, re-check my blood results, give consent for me to have the tablets? and they have to order more as they hadn't enough. With the postponed appointments I had run out of hydroxy.

Everyone I met was pleasant and tried to be helpful. They have had extra, discontented patients dumped on them at short notice so there will be a period of adjustment.

In future I will have to have a copy of my blood results and monitor them for small changes. Any idiot can just look for an asterix on a blood result for 2 seconds and say it is normal.

1 Reply

Hey Borage...

I hear you loud and clear...

Being blessed with a blood cancer that is among the rarest of the rare, usually finds that most GPs do not know much about it at all until they are educated through our presence etc... (I did say most, not all...)

I can only suggest that you manage the the stress of this situation as best as might be possible. I am sure that I would also find it a challenge... There is much about this condition I personally find a great and growing frustration.

Best wishes and I hope a new door opens soon...

Steve in Sydney


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