Im feeling very angry, frustrated and let down today. Iv had an appointment with a hospital medical director and pals worker because i disagreed with the content of a letter from a consultant. Basically what ever is said in his professional opinion can not be changed or challenged.
Are we then to accept that when you have a hurried appointment and do not get the chance to fully explain all your symtoms that their word is final despite the patient having the fullest of information of their symptoms.
Pals are paid by the Trust in this instance and i do not accept that they are there to support the patient, but merely to move the complaint along to the dead end.
The medical directors parting words to me were just be youself when going to see a consultant, if only that was true....and possible.
Thanks
Christine
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yorkshiregirl44
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So sorry you've had this experience too, but it is almost exactly what happened to me when I 'dared' to complain! Close ranks & accuse the patient of lying!!
Im sorry also that you had to expereince this...i dont know about you but i came away from the meeting feeling hyper with all these thoughts of what i was and what i was not going to do. A few hours later i realise there is nothing i can do. Iv no fight in me at the moment, maybe tomorrow i will have.
How did you manage to get heard and move on from it? if you did that is.
Christine, I think the problem is that he is the 'specialist and trained'. We, on the other hand are the sufferers and untrained but due to our experiences eventually know and understand more than the 'specialists' with regard to our autoimmune condition, but aren't allowed to voice our opinion.
I doubt also that they have any idea of clinical symptoms and are directed that the TSH is 'king' when a diagnosis is, if ever, made.
Sometimes if feels like the fight has become bigger than the cause if you know what i mean.
Just the other day i was sorting out my blood test results which was long before i knew anything about thyroid. I came across a TSH of 14, no action was taken even though id been going to the doctors with most of the classic thyroid symptoms.
It is disgraceful you weren't diagnosed with a TSH of 14, and they don't even take into account nowadays of any clinical symptoms because of their ignorance about them, so the patients, who once relied fully on their doctors to diagnose and treat, are left clinging to a raft like a drowning man. Eventually, if they are lucky they come upon a site like this one and clamber aboard. At least we have our experiences to share and some are able to get their health back as I hope you do. It's not a small number who have joined this site never mind those who have no access to a computer. What a waste for the want of a decent thyroid hormone replacement. I think the members have now reached approx 24,000.
I requested my medical notes from 2011 and noticed that my TSH has been above 4 since then and no action taken despite being symptomactic and changing GP surgeries 2 years ago. I hate to think if I had asked for further back what my TSH would have been before because when I think back to what health issues I have had since I had my second child 30 years ago it frightens me. Especially since GPs always seemed to think it is all in my head. Gentle hugs Joolz.x
Is is any wonder we sometimes do feel anxious or scared, our expereinces are what stays with us and damage us. If we had more positive expereinces then we would not feel like we do.
But we dont get positive feedback from the medics and as you say they are ready to label with what ever they can see from weight, smoking or if all else fails its in your head....
Sadly this sounds about right. When I complained about a consultant haematologist who told me that my blood was as good as his when my ferritin was 16, his response was that I had made up the substance of my complaint because I didn't like the advice I had been given!
It is time the NHS stopped covering its @rse and had an open and transparent complaints procedure.
I dont think that going to happen do you? complaints mean change and why would they change when according to them there is nothing wrong with the system...
I once had a consultant who actually tried to make me change my symptoms to match his diagnosis (not thyroid but could have been thyroid related). Trying to fight our cases individually is like trying to move a mountain a spoonful at a time. That is why organisations such as Thyroid UK are here. They represent thousands of us.
I have learnt from this, that i will never go through this procedure again. I will still voice my opinion and coplaint but i wont be drawn into a meeting i was told would be beneficial to myself.....
I have to agree about PALS: utterly useless and lack any independence. Their job is to manage away complaints and steamroller the patient in the process. I remember the Community Health Council, which was a genuinely independent national network of organisations acting in the patient's interests. If your local Chief Officer was a good one - and mine was - they had a lot of clout within the regional NHS. They were abolished, without consultation, by Alan Milburn.
That is exactly how i felt yeaterday, the steamroller was there in force, the targets me and my daughter, we did put up a fight but the steamroller is quite a heavy ugly imposing object....
The NHS never takes on board any complaints. I complained in writing about a midwife my daughter had, long story. A meeting was set up between head of midwifery and PALS who were quite shocked at my daughter's treatment and even said there had been other complaints. Well 8 years down the line I'm still waiting for an update of how they disciplined this person. You won't get anywhere other than getting it off your chest in writing.
I have tackled consultants before face to face, and all that happens is they get their own back. My gastro didn't give me anywhere near enough sedation for a procedure! I couldn't understand why there were other patients "sleeping it off" when I just walked up to reception and said I'm going now.
Even whistleblowers within the NHS get pushed out, it happened to my sister who is a consultant nurse and the consultant she was working with was killing patients with inappropriate treatment. My sister got disciplined and eased out of that hospital even after 30 years of loyal service. She ended up working on NHS Direct. Save your energy and sanity, you won't win. Hugs.
Hi Helcaster, how are you? Horrified but not surprised by what happened in your own PALS story. They're very good at handwringing and sympathising with you in person about your bad experience(s). But then nothing happens. I, too, have had experience of 'revenge' tactics by medics, used when patients dare to stand up for themselves.
With regard to your sister, I'm sure I heard yet another similar story on an R4 programme a few days ago - can't remember which, but it may have been You And Yours. Stories about NHS whistleblowers are so common and they all seem to get the same treatment from their employers. I'm so sorry to hear your sister's career was disrupted so badly.
Hi Hillwoman, very unstable still, gaining weight at an alarming rate I started hydrocortisone just over a month ago, I felt I had reached the stage where I hadn't got a choice I felt so ill. 20 mg I didn't even notice, I'm taking 25 mg now and I've perked up a little. I've given up on Mexican T3, I ordered just before Christmas and honestly felt there was no T3 in them! I went on a downward spiral, all my skin dried out and cracked again and I put on 1 1/2 stones in weight very rapidly. So I'm now taking Tiromel and doing a little better. Still a massive dose though, and I still have low temperatures, even a 35.9 last week. Extremely baffled by it all. I'm dosing every 4 hours. One good thing though is I'm now sleeping better than I have for years, so that's a positive. I've also during this time weaned off cimetidine for my bladder, it's given me low stomach acid for 12 years now, it also alters liver enzymes that affect using thyroid meds. I'm sure it will take a while to leave my system. I've trebled the dose of the other drug for my bladder hydroxyzine and so far it's just about holding the pain, although I'm now very aware of my bladder again. Hydroxyzine is sedating, so even more tired
My sister was a ward sister on an ITU ward originally, she's highly skilled. She did teaching too at the university, outrageous how the staff are treated if they dare to speak up. That consultant is still working, and still probably killing people, he certainly wasn't damaged by the allegations.
Hydroxyzine is sometimes used as a pre med for surgery, it dries your mouth and helps with anxiety too. I take 75 mg now, the first evening I keeled over, but now I'm used to it. It does stop me remembering quite a lot of the evening which is scary. But it damps down mast cell activity so reduces swelling and pain.
You just can't win with the NHS I have complained so many times and you just vet glared at or ignored. I had to take my youngest daughter off a ward so I could care for her better and I insisted a doctor come down to me so I could tell him why. After surgery none of her consultant's instructions were followed, she didn't get fed for nearly 3 days. I had to prove she could eat and drink, so I brought suitable food in to show them. She had waited 3 hours for a dry sandwich that was in a fridge on the ward. She was the only patient, as it was supposed to be a day case but Daisy had had a bleed and they kept her in. Two nurses with one patient couldn't deliver a sandwich that was a few feet away. When I got there they were giggling on the nurses station, unfortunately for one of the nurses she was the one who had the instructions from her surgeon so I launched in to her, there was nothing she could say. They had been giving Daisy paracetamol for severe pain. I made them bleep a doctor who came to the day ward and I told him why I had come to take her home. Once I get started you can see people's colour drain! When we discussed where the nearest A&E was if she started bleeding again I said she would get better care with me nursing her. Which I did. I have no absolutely no tolerance where there is any degree of neglect. Having been left disabled because of a nurse who couldn't be bothered to take a urine sample to the lab, I just can't hold back.
Yorkshiregirl44, I greatly admire you (and anyone else) for at least attempting to get something done. I could probably make a list of problems I have had within the system, from “lost” referrals to incorrect treatment (which I didn’t know at the time), all of which have severely impacted my health.
A GP at my surgery suggested I contact our local PALS to complain that I am still on a waiting list to see a cardiologist (referred Nov 2013, appointment is May 2015, it will have been 18 months – let’s hope I’m not ill, eh), but I just don’t want to rock the system for fear that I will get labelled as a trouble-maker. I am still under the care of several specialists, and I want them to be on my side.
People who have never had to struggle with their health within this system really have no idea. I hate that my illness has actually given me a very jaded view of how the medical profession works overall, and the “closing ranks” doesn't surprise me anymore.
Your philosophy is right..try to keep them on board. The problem is what do we do when that does not work....When you expereince abuse time and time again its hard to keep the lid on things. I remember saying to a doctor that i had visited Dr P she laugheed openly sniggering in my face.
I totally agree Miggy, and Patients Association advised me on contacting him when I was told by one hospital I might wait 8mnths for first apt-it certainly got them moving, still had to wait 6wks but huge improvement!
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Horrified but not surprised by what happened in your own PALS story. They're very good at handwringing and sympathising with you in person about your bad experience(s). But then nothing happens. I, too, have had experience of 'revenge' tactics by medics, used when patients dare to stand up for themselves.
I started hydrocortisone just over a month ago, I felt I had reached the stage where I hadn't got a choice I felt so ill. 20 mg I didn't even notice, I'm taking 25 mg now and I've perked up a little. I've given up on Mexican T3, I ordered just before Christmas and honestly felt there was no T3 in them! I went on a downward spiral, all my skin dried out and cracked again and I put on 1 1/2 stones in weight very rapidly. So I'm now taking Tiromel and doing a little better. Still a massive dose though, and I still have low temperatures, even a 35.9 last week. Extremely baffled by it all. I'm dosing every 4 hours. One good thing though is I'm now sleeping better than I have for years, so that's a positive. I've also during this time weaned off cimetidine for my bladder, it's given me low stomach acid for 12 years now, it also alters liver enzymes that affect using thyroid meds. I'm sure it will take a while to leave my system. I've trebled the dose of the other drug for my bladder hydroxyzine and so far it's just about holding the pain, although I'm now very aware of my bladder again. Hydroxyzine is sedating, so even more tired 
Post-Dr GRB Skinner: here’s one way forward
In consultations with Dr S he always sought the same clinical information 
We depend on TSH because "your brain knows the best"
Former patients of the late Dr Gordon Skinner
Liothyronine removal scare 
