I have now decided it's time for me to write our story and try to get it published. I will not be silenced or bullied anymore.
Everyday you read of millions of pounds in investigations, coverups, and the blame games. Whether it be the police, medical or government. Your very rarely hear about the sufferers who are the victims, their struggle of life afterward.
Luckily enough I have kept reports and information to back me up.
My beloved is on the road to recovery, still in pain and may take many months to recover.
At least his death certificate is on hold for now !!!!
Martin hooper asked me 17 years ago if I would do an interview, at that time I was some what shellshocked at the NHS's behaviour, changing medical records etc, no thought to what they had done. I did meet him at Westminster along with Sally. I didnt have any fight in me left as you all know how draining this condition is.All they wanted to know was I going to sue them.
Looking after mother and fighting her corner, fighting to get my injections back, frozen shoulder from injection and now my partner. It could be months before he is back, walking impossible.
So 45 years of hell, so if nothing else writing a book will at least give me satisfaction of expressing my pent up feelings, how I was treated.
I wish you all the strength you need to write down what you have been through . All for the lack of / sufficient injections of very cheap B12 , which has to be administered by a nurse . I am convinced that if the treatment for P.A. were a pharmaceutical drug , there would be no problems for us in getting what we need. . I feel that I can’t enlarge on that ………. …. … Very best wishes .
Not sure you would even get it if it were a pharmaceutical drug. Many of us with PA also have thyroid problems and those of us that need T3 have to source it privately ouselves. I am so grateful for the HU forums as GP's are totally useless.
I don’t have very much knowledge about the pharmaceutical industries, but I have wondered whether the lack of a lucrative commercial outcome for the big pharmaceutical companies means that no-one is really interested in exploring the role, impact and efficacy of B12?
It amazes me that more work on this is not being commissioned / funded by (for eg) research councils. I suspect that underlying B12 deficiency probably results in a massive health burden to the NHS (not to mention to society / families / and at an individual level) across the board, and in a number of branches of medicine..
I believe that you have hit the mail on the head with your conclusion . THERES NO MONEY IN IT FOR “BIG PHARMA” and no kudos for GP surgeries. The PAS is doing what it can with limited resources . It’s also difficult for the PAS , which has to be careful not to tread on the medical establishments’s toes. ( And their toes are very sensitive)
There is no doubt in my mind that if PA were treated with the respect it deserves , the NHS could save millions . The poor health that results from B12d from what ever cause, costs the NHS dearly. Reading members experiences on this forum reinforces my belief
But i will be eternally grateful for this forum Thank you all and especially Martyn Hooper, who is in our thoughts especially now that he is unwell .
Really pleased your partner is now on the mend and I hope your nightmare is coming to an end for you.After 6 years of being denied B12 injections and 8 months back on them I feel happy/sad. Ill/well all mixed emotions especially because none of us on this forum should suffer because the medical profession don’t listen or take us seriously .
Please write your book. I wrote mine for another reason. I was a young battered wife and when I got away I campaigned for better rights for victims and I’m now Patron of our Women’s Aid. I campaign and wrote my book not just to help others but myself also.
Start today, write things down, keep a pad next to the sink, the toilet , next to your bed and write things down as they come into your head. It will do you so much good mentally and also help others. You sound a real inspiration. Well done !. X
I have been very fortunate in that my partner has never been that way in fact the opposite.
Again you have had the strength to overcome past misdemeanors in putting your story out there for all to read, no doubt have help thousands of people in the same situation. I am sorry that you have had to go through such an awful experience,
And nobody will ever be able to erase this from your memories,.
Just knowing that you took the opportunity to put pen to paper , that the tears flowed in writing this
And I take my hat off to you to for your formidable strength. I look forward to reading your book one day which will help so many people move forward and hopefully yourself also. Best wishes. X
Good luck with all you decide to do Sallyanni👍 and I hope your partner keeps improving
You could try writing to Sajid Javid ,secretary of state for health,as apparently one of his relatives has M.E / CFS. You could point out that it’d be a good idea if he arranged a trial of loading doses of b12 to see if any improvement because so many of us here suffer with b12 deficiency /Pernicious Anemia which gets wrongly labelled with these illnesses,along with MS or Dementia because gps are too lazy to investigate properly and we don’t get the treatment with b12 supplements that we so desperately need.You could vent a lot of those justified frustrations you suffer from to him and maybe get a half decent response,if you have that fight in you I’d say use it wisely and try and make yourself feel heard,it may just get that result you need.
I wish you all the luck in the world xx
in reply to
Thankyou,I noticed one of your comments whilst I was taking a back seat, regarding an operation you had as a child, leaving you with a scar across the tummy. (I believe it was you!) I can confirm my partner also has this, it was picked up by the GP, but dismissed . Is their a connection?
in reply to
Hi Sallyanni sorry for the delay.Yes I did write that it seems that I had a bowel operation as a 3 week old baby as I wasn’t thriving,projectile vomiting of feed and diahorrea .My elder sister told me about it but she’s passed now and mums passed so I’ve no one to ask so I’m just researching what I can now,it’s funny cause I was discussing it this week with a lovely young private gp I’m seeing just now. Have a google at resection of the ileum in babies and it makes interesting reading,you cannot absorb b12 amongst other things,it all makes sense to me now.I always had a brown scar running down my front of lower tummy but never knew what it was so now I do and of course I want to know more lol.
I do hope sincerely things lighten up for you both it’s so weary battling day in day out and if we are honest it’s rare to find one sympathetic family member isn’t it.best of luck xx
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Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance
seeing neurologist, advice on b12 injections welcomed…
