This is a press release issued by Addenbrookes Hospital this morning and is also on their facebook page.
Addenbrookes is ranked the 3rd best hospital in the UK and Cambridge is seen as the Biomedical capital of the UK - so it is excellent for them to be backing the cause.
cuh.nhs.uk/news/expert-call...
Thank you Mr Julian Owen.
Thank you for posting.
For others reading this thread, MR P Julian Owen is the chair of Club B12, a group of researchers and doctors who are looking into B12.
Glad they have improved.
3 neurologists sent my daughter down the mental health route and treated like a time waster.
I can't describe how awful she was treated ( or not)
Left on the ground outside A and E thinking she was having a stroke or heart attack.
Literally crawled through the doors as couldnt stand .
Discharged after a bag of saline.
Noone thought why did that help her ??
( undiagnosed b12def. Pots caused by it )
Gastroenterologists found nothing but offered tube feeding ??
As deplete in many nutrients and severe digestive disorder.
Tests for Addisons .
Brain and spine MRI .
Spinal disc prolapse .
Labelled with fibromyalgia.
Can't count how many appointments fought for.
Can't count how many times told nothing wrong with her .
All I have is very bad memories despite its reputation.
No one joined the dots .
One listened
One kind.
Appalling care as an impatient I won't go into.
This was not a one off experience .
Humanity and basic respect and courtesy shouldn't have to be taught.
My daughter in and out of there over 3 years.
She was then an inpatient for 10 days. I blocked her discharge 3 times as physically not fit enough to be moved or in deed able to sit up without passing out.
Pysiotherapist abusive.
Later a complaint was.
taken seriously .
Totally out of her depth and somehow thought she was faking a POTS episode.
I imagine the general consultant has had little praise but certain he would be highlighting her case .
He was our hero.
Just listened and tested.
The general medical consultant arrived and finally all the tests were done including B12 ,a tilt table test and agreed to a referral to Queens in London.
About time too.
That all got in a muddle as very emotive .
But yes.
Thank you
Mr . Julian Owen
I do wonder if liaised with the 'Iron Clinic' too.
Gives us hope
Thank goodness for that general consultant. Plus, you blocking your daughter’s discharge. See these :-
I) ‘Sent my daughter down the mental health MH route’.
2) ‘Treated like a time waster.’
3) ‘She was faking a POTS episode’.
4) ‘Left on the ground outside A and E thinking she was having a stroke or heart attack.’
I am non-clinical. I am a self-employed Auditor.
I look at Patients’ notes and when I read how a Diagnosis was obtained without ANY tests, I have to take myself for a walk.
When I read that that person has repeatedly been denied tests and ignored because their misdiagnoses include Hypochondria or Medically Unexplained Symptoms then I scrub my bathroom.
I am trying to find ALL the failings in the NHS system as to why that person died. My objective and fact finding work is then passed on for a Public Inquiry.
🐳
Kindness is a lifesaver.
"...sent my daughter down the mental health route and treated like a timewaster "
- ?*! !* ??
Who was wasting whose time in that situation ?
Ignorance can be forgiven - if acknowledged at the time - but never EVER lack of compassion.
Another small step forward.
Thank you Corney23uk,
Mr Owen is indeed doing all he can in collaboration with many others.
Yes. I read this article in the week. I commented before, it's definitely worth a read. It could be extremely handy if you are struggling for your health provider/gp that don't know much on the topic.
Thank you for posting this, it is really helpful. I will take it and the link with me to the Gp. I have already given her the link to Club B12. Because of neglect and no understanding of PA I now have nerve problems in my hip, possibly scd, saw the physio on Wednesday. The gp in the new surgery had said she didn't think it was a nerve problem when I showed her I couldn't lift my leg, I had to manhandle it onto the exam table. At my old surgery I was found to feel no vibration in that hip but even though I was complaining of strong pins and needles in the whole of both legs she said it was ok. I gave the physio a link from PAS explaining about scd, it was spot on. Her sister has PA sadly but it helped me because she understood and didn't treat me like the crazy old lady with the B12 hangup dishing out leaflets. I have at last been told how often the new surgery would be giving me B12 injections, "like other patients, every 2 or 3 months " I was given 5 to last me the year. Hopefully when I give her the links she will rethink this. The coming tests will back this up. Thank you so much
What a joy to read this! Thank you for posting it. Break out the party hats!!
Got the call on Friday
Neurological question re B12 treatment
had b12 results and called in to discuss 
