This post was shared on facebook by a desperately ill woman in Scotland. Her health authority, Forth Valley, do not seem to grasp the urgency of her perilous situation and are ignoring the second opinion she paid for. So much for patient choice and joint decision making. It really is all just hot air.
Hi folks. I am a bit lost for words so what I am here to say is HELP. I have jumped through so many hoops, undergone tests, vomit daily and now have a non functioning stoma.i have had a 19 lb growth removed from me, a black mass (found to be gangrene) and a septic appendix 5 times normal removed from me.
I was then told i required some surgery for a herniated stoma and only later found out that scan had clearly shown 7 torn areas internally. I have had information withheld from me, scan results deleted, refusal of information and even refusal of surgeons to see me. I have cried and begged for help.
i am the victim of a corrupt health system who on establishing failure initially of a gp to refer for tests ,( necessitaing the vast surgery i underwent in october 2012) when in fact early diagnosis would have meant only key hole day surgery .he then told me after my remaining bowels erupted from my wound that I had a simple prolapse and was unwilling to operate. i was in torture and pain, my care manager and stoma nurse were telling everyone who would listen i was sick. i left the surgeon and 15 mins later he advised my husband i had a huge herniated area internally, require massive reconstructive surgery and didnt realise i would be so upset by his refusal to operate!!!
I was distraught friends, I wouldn’t have let this man operate on my dog after the lies he had just told me. I felt trapped , i felt yet again I am disposable.
I fought on and found the top gastr oprofessor in Scotland. I paid privately to see him in ross hall hospital. he advised me, my mum and husband i had been mis diagnosed and had pan-enteric dysmotility a life threatening condition which means i cannot digest food and vommit constantly. he was appalled at my wounds. my initial opening from groin to mid chest has split internally and my bowel is protruding. this has torn around my right side and engulfed my stoma. my bowel pulsates and can be seen through my skin. my bowel is twisted twice under the stoma and the pain is excruciating. internally i have 7 opening with loops of intestine caught in them.
the professor wrote and urgent referral to his surgeon colleague in the royal infirmary glasgow and detaailed i would need an entire rebuilding of my abdominal cavity with mesh, the stoma resited to my left side and all the holes patched with mesh. he advised if i was mechanically put back together he could then refer to manchester to the only hospital in britain which deal with my digestive disorder. he said he could avoid having a shunt fitted to my neck for overnight feeds. he trully believed this was all do able and we waited. after several weeks we found that the referral had suddenly been changed to routine? it was lost in the system and i was eventually seen almost 12 weeks later on tuesday 3rd december.
The surgeon opened by telling me in the strongest terms of her friendship with my last surgeon the refused ANY surgical treatment. she stated she disagreed with the diagnosis the professor made and advised i was too ill to make operating worth while. she had no case notes and was writing my case history on a page of printed name labels (not mine) and looking at my scans from forth valley. interestingly she could not see any scans done this year and last which detail the internal damage i have suffered. she tried to access the surgeons post operative notes and guess what???they are gone !!! I was dismissed with the statement “i dont have 2 hrs to speak with you, i have 35 patients waiting” goodbye.
We contacted the professor at ross hall. his admin people advised this has never happened before. you get a diagnosis, the plan for surgery is made then carried out. well this afternoon we received an e mail from the professor,. he is apparantly sad at the outcome and suggests i now see a gp to ask for a referral to another specialist and to try edinburgh. he has closed my case, he is no longer offering me his opinion or a referral to another surgeon. he has removed the offer of care in ,manchester and washed his hands of me.
so it would appear that in each case the surgeon or dr involved in an attempt
to cover up past mistakes has refused care. I was a nurse , I know the power these people have but never have i seen such planned coercion, removal of information, lying to patients and family in an attempt to cover up misdiagnosis, professional arrogance and the old boys network.
I NEED YOUR HELP, to make my story go viral. I need the press, television and anyone else to shame someone into giving me the life saving treatment I need. we talk a lot these days about our right to die. I am fighting for my right to live. each of you consider the stories you have heard, the bad care and treatment you have known someone else to experience. well here it is now , this minute happening to me. i was told by the professor i wouldnt make it past christmas. i am a walking time bomb. i have had gangrene once and survived but now i am so physiucally ill i can barely walk. i lie in bed all day, i cry in agony. i am begging each and everyone of you to beg everyone you know to share this and like the page. if you have any ideas about how to get more coverage then i am listening.
please give me a chance to live, I fought to have my child, she was 3 months premature. please I beg of you all help me to see just a few more years. thats all i ask.
I will be adding some pictures I will be using. these are not for the faint hearted but they will follow. I will also be asking for your help with a public display of people power. details will follow my dear friends.
go on folks….save my life for Christmas x