Leicester Royal IBD Nurses
Post started on 24/05/18
So, I have to moan about this, I have Crohn's disease with high-grade dysplasia likely to lead to bowel cancer if not already, I was diagnosed and treatment agreed 200 days ago, but nothing has happened, (18th April 2018) last month I saw the senior consultant Dr W, he agreed to try some autoimmune injections and asked the IBD nurses to initiate treatment, as of 16th May, I have not heard from them, I called them, they said they had meetings etc and were on the case and would have called me SOON, in between times my health is deteriorating and maybe the cancer is growing, anyway, they still can't do anything, because apparently, I need a blood test that was not ordered by the consultant at the time he asked the nurses to treat me, so I have to go into Leicester Royal Hospital, just for a blood test, so the nurses can have a meeting and maybe consider starting treatment, if I am not dead. I spoke to nurse N there, I have known her a few years, she is nice, but they are busy with nurses on Red days, toil days, personal days, sabbaticals, extended holidays, sick pay (above legal minimum), extra sick days (on top of real ones) maternity, paternity, compassionate days, paid while at the dentist etc, early retirement etc. nurse N herself had been off for 6 months because her father died, wow, its nice to be able to do this, so now I am waiting on a blood test via the IBD nurses.
Apparently, the HIV blood test is not something a local GP is capable of doing, so even though I am quite sick, and already have Dystonia, I have to travel into Leicester, to go to Leicester Royal Infirmary, because of a mistake by the part-time nurses! , in reality, it will be most of the day, again travel costs and missing work, let my customers down another time with likely knock-on permeant business consequences for me
In a way I am sorry to say that obviously cost is a factor for the NHS, but also so much politics, politically correctness, extra time off, no staff are responsible for mistakes or delays; and in any event, if a patient dies of cancer due to the long delays and errors, that save the NHS money AND they don't have to pay any pension , so errors create a win-win for the government; it’s the only industry that you can gain by messing up and having delays
Yes, sure the staff are nice face to face, but ultimately I don't think they worry about people too much, just a job with many side benefits never discussed when they are complaining about not getting paid enough; it's still a job that no private employer could offer such extra benefits
updated 23 May 2018
At the time of writing another lady has died of cancer, with a 70% chance of survival
http://www.dailymail.co.uk/health/article-5754873/Grandmother-73-died-NHS-doctors-failed-FIVE-TIMES-detect-bladder-cancer.html
Updated 23rd May still waiting
called the IBD nurses, as not heard anything, the blood test form has still not gone anywhere, she's on the case, its only been another week since she promised to leave the form in reception, this is now over a MONTH from18th April when treatment by IBD nurses was sanctioned
updated 6 June 2018
Finally, the blood test requested by the senior consultant on 18/04/18 has finally arrived, I understand it has to be fitted in between Red days, toil days, personal days, sabbaticals, extended holidays, sick pay (above legal minimum), extra sick days (on top of real ones)
maternity, paternity, compassionate days, paid while at the dentist etc, early retirement etc. but the nurses finally got the form posted out, 48 days later! now after the test results, I should be able to start my cancer treatment
11/06/18 Eventually I was in hospital for this special blood test that a GP etc can't do, after asking the blood nurse about this... apparently she can't do the test either because it requires a special kit, which the IBD nurses are supposed to send out with the form I waited 48 days for, apparently the blood nurses don't keep the kit, because its £90.00 and they don't want it out of their budget, the lovely blood nurse, went and fetched a kit and finally I had the test. Now I wait to see if I can actually have the treatment
05/07/18 I still have not had my blood test results from the IBD nurses, I am not a fan of tests, but I am not allowed to start my cancer treatment until I pass the blood test, I have called the nurses many times, because they haven't called me, but I was unable to talk to a grown-up, apparently they are busy, me too! I know they are busy, I see them on the wards and around the hospital, they socialise with every nurse they encounter, get the latest news, see what each other had for dinner last night, and the recent excellent good weather in the UK has stopped some making it into work, this combined with Red days, toil days, personal days, sabbaticals, extended holidays, sick pay (above legal minimum),extra sick days (on top of real ones)
maternity, paternity, compassionate days, paid while at the dentist etc, early retirement etc. OR do the NHS want to take their time, knowing some won't make it? I understand the treatment; if it ever starts is expensive. I understood time and urgency of treatment was very important.
13/07 Friday the 13th! Still no contact with the Leicester Royal Hospital IBD nurses, the weather in the UK has been warm and sunny, England got to the semi-finals in the World cup, and coincidentally many nurses couldn't make it in to work, and when they do, its chat and coffee first, yes, I am annoyed, I see them breezing around the wards talking to colleagues and enjoying their day, feeling good about helping the occasional patient too, its now been
86 days from 18th April, when my treatment via regular injections was sanctioned by the senior consultant, and NOTHING has started, in between times my condition deteriorates, I am now unable to work, I have two doctorates and an MBA and I am borrowing money and watching daytime TV when I should be at work!
Updated 20/07 Fri
Now over 3 months and no blood test results from the IBD nurses, apparently they are busy, yeah right!, we are all busy, but now I can't work. I think the only way I will get noticed as a white male is to go into Leicester Royal hospital A&E - they will find the results, and hopefully, start treatment BEFORE I die
updated 31 July 2018
Still no contact from the IBD nurses and they don't return my calls; I am going to have to go into Leicester Royal hospital, even though I am disabled and in pain, I will have to waste hospital A&E resources because I have waited 4 months already!
updated 23 August 2018
Finally, I have been told that my treatment will commence on 29/08/18 :-)
