Yesterday was an interesting day

[nellietheelephamt]

I had a face to face meeting with the Health Board CEO. To start with he quoted the Patient Experience answers to my concerns but I soon stopped that showing photographic evidence that they were lying. As the meeting progressed he became very quiet and obviously shaken. His PA took a lot of notes and he has promised a full and extensive investigation. I told him I had lost all confidence in his organisation having been treated so appallingly and was being forced to seek private treatment. Again he was visibily shaken at this.

A couple of hours after I got home there was a knock on the door and the test results I had requested and that the hospital were being difficuly over were delivered by courier.

The test results appear to be filed by specialist area so anything requested by GI is in the GI section, Anything requested by respiratory medicine in the RM section and so on. Until I finish my spreadsheet no one will have ever had a full overview. I have a lot to tabulate, sort and chart but even to a layperson it doesn't look good.

I have the issues found on the films. Anisocytosis, hypochromia, microcytosis, macrocytosis, neutropenia with toxic granulation, atypical and reactive lymphocytes, giant platelets, anispoikilocytosis, polychromasia, oval macrocytes, pencil cells and target cells.

The JAK2 V617F test was indeterminate as the sample was old and stale when received at the lab. There was a note that rarer mutation tests had not been requested and MPN could not be excluded.

The discharge letter from the hospital gives my diagnosis as "unwell".

[hunter5582]

I am glad to hear that you followed up on your complaint about the poor care you have received. It is unfortunate that you had to push that hard to get your own data. It is worth the effort though, This will allow you to begin the process of sorting out what is going on. Note that "unwell" is not a formal diagnosis.

I hope that you will get a more clear answer from the private consultation. Please let us know what you learn.

[nellietheelephamt in reply to hunter5582]

When I read "Diagnosis: unwell"

I thought "no s*** Sherlock!!"

But that is my discharge from the NHS system so now 3 weeks on Monday until I am seen privately. I am planning to send all the data (hard lab facts) I have in advance with a letter asking for that to be looked at before I meet the consultant even if the reading takes 20 or 25 minutes of the consultation time. I don't want a hurried reading but time for the test results to be read and considered without the doctor feeling rushed because I am there looking for an answer.

[DiveGoddess in reply to nellietheelephamt]

Nellietheelephamt,

I am chuckling here with your reply to Hunter, “no —- Sherlock” 😂😂😂. Thank you so much for that. Most importantly, I am truly sorry you are experiencing such difficulty trying to move forward in your health care. That institution has the abilities to make this a distress free time on their part. I am hoping you find someone knowledgeable soon who helps you obtain a Diagnosis so you may begin treatment and the healing process. Glad to be here in this Community, sending you my thoughts and prayers. Christy

[RoundTheWorld]

Glad things are moving for you at last. The Private Consultation will also move things forward, although hopefully with the recent developments you will also be promptly offered meaningful care locally.

One of the obvious questions is why they didn't repeat Jak2 if the first sample failed.

[nellietheelephamt in reply to RoundTheWorld]

I don't want to be seen at the local hospital now as the relationship has broken down irretrievably. I can't trust them and there are too many oversights and errors then lies and cover ups.

[Mostew]

Well done . Amazing a courier was sent . Shows what can be done . .I hope private appointment goes . I'm looking forward to hearing of your experience...

[Mishie14]

Good job standing up to right the wrongs. Your distrust is totally justified. Very glad you are soon going to get review and hopefully clearly stated conclusions of your tests at last. Appreciating your courage and fortitude which is helping others who likely were subject to the same poor care. You are making a positive difference! Thank you.

[william-Indo]

You could try GROK 2.0 AI provide by Elon Musk to get the answers of your CT films.The AI will give the diagnose with 93% accurat as Elon promised.

Since it is beta version, the service is free

Cheers

[nellietheelephamt in reply to william-Indo]

I don't have the films or photos of the films but do have the lists of findings. Is that enough for the AI? I will investigate!!

[Cassandra61]

Thanks for letting us know, this sounds like the most terrifying and exhausting ordeal. Having an MPN is enough without having to fight for care. However, Hunter is right, at least you have the information now and a place to start to get the right care. I hope this is a turning point, let us know how you get on. We are always here for you.

[nellietheelephamt]

I am not brave, I am not one for making a fuss and I don't get angry quickly but after over 2 years of being messed around I am now furious at what has happened. I am also very depressed and the boiling anger is keeping the black dog under control.

Having worked with data all my life I am also astounded when data is ignored or misused or not used.

As a senior manager in a multi-national (and the first woman to break the glass ceiling and having no respect for status for more senior plonkers which used to cause a few ripples and a reputation of being difficult) I used to say "In God I trust. Everyone else needs to bring me hard data." Another useful quote with various attributions is "time spent in reconnaissance is seldom wasted" So look long and hard at all the data long before coming to a conclusion. In my experience and with a few exceptions I have found doctors find one possible cause of illness and make the facts fit their theory. If facts don't fit then ignore the facts. Oh and check the data is accurate several times lol.

[light]

Good for you. Success! Wishing yo well.

[saltmarsh]

You are a breath of fresh air. Sorry about all the nonsense but you're making progress. Best wishes going forward

[Cja1956]

After all that and only getting a diagnosis of unwell, I’m sure that was very frustrating. I would be fuming. 😡

[nellietheelephamt in reply to Cja1956]

More resigned to to hopeless inadequacy of my local hospital.

[Pam81-]

really loving this story and so glad you got to the end of it and the truth came out.

Gives us all hope that advocating for yourself is the right thing to do 😍