Come on Healthunlocked, what happened to my post????

[coolpolitealex]

I am at a loss as to what happened to my post, please can you let me know or are you still mulling over it ? thank you.

[coolpolitealex]

still waiting Healthunlocked

[Bananas5]

What's the problem Alex? It has nothing to do with HU. You should be able to read as you write then edit and post. Doesn't get checked by anyone only you.

Pat x

[coolpolitealex in reply to Bananas5]

Well I'm baffled because I wrote a post that I know will be possibly not well received and I pressed post, and I can't seem to work out where it went, but hey' I can re-post it if that is the case I've made a mistake, but I just can't think how it could have disappeared , Hmmm, best Alex

[Bananas5 in reply to coolpolitealex]

I've never known it removed before posting no matter how contravertial.

However if you think some people might not like it maybe you should think about why you are posting it?

Remebering HU guidelines about helping and supporting others.

Ooh this was a sign Alex. Spookily warning you!

Seriously though once you have written and pressed submit it is there. Then you can go down and press the little drop down bracket and edit.

Pat x

[Hidden in reply to coolpolitealex]

i had the same happen.i wrote a post and received an email from HU notifications when another member replied but when i opted to read the reply my post or the reply did not appear.post wasnt deleted by me and didnt contain anything that would be a breach of HU guidelines.

[Bananas5]

Doesn't work like that Dan. We are trusted to abide by the rules which we do and if we don't then they come inn and remove.

The only person to see what you post when first submitted is...you

Pat x

[coolpolitealex in reply to Bananas5]

Well due to the point, and points I raised around Legal matters about wrongful Diagnoses, but that said it was because during my last appointment I was told that they could not know because another consultant said something and missed (a whole lot) and so after many years was told that I had Cauda syndrome, or something to do with the Cauda ,as never do they ever put it in writing so that I know exactly what it is, so instead am reduced to Googling it, and then can't get past a lawyers add , and my point was that trying to get help around missed chances by doctors, but not nesecarilly (sorry about spelling, never get this word right) about taking action that is not about money but about airing and getting shot of my anger in the right direction, so that it will not happen again to someone else, but because of the way things are in the NHS around mistakes, it ends up a bloody mess as everyone takes defensive measures, due to legal advice (I assume) .

Especially if you have problems around things going on in your brain, you would have thought that there could be a place within the NHS who could help you work out everything, because they do make bloody mistakes especially if those mistakes are compounded by attitudes and collusion leading to, well let's just say places and areas that make things a whole lot worse.

Maybe there are conspiracies and not just in peoples head, anyway best Alex

[joannie1964 in reply to coolpolitealex]

Hi Alex just been reading your posts and just a suggestion, but if you are unhappy about the way you have been treated by the NHS you could approach Pals with a complaint (Patient advice liaison service) every trust should have one. You may then feel a little less angry to have someone impartial listening to your concerns?

Jo

[coolpolitealex in reply to joannie1964]

Thanks Jo have thought about it best Alex

[Hidden in reply to coolpolitealex]

Hi Alex,

It looks like there might be a bit of an issue with HealthUnlocked's system losing posts. As others have pointed out, Pain Concern do not vet posts before they go up.

If it's Cauda Equina Syndrome you've been diagnosed with, it should have been treated as a medical emergency. You're right that there's not a lot of info online. This is from the NHS website:

"Cauda equina syndrome is a rare and severe type of spinal stenosis where all of the nerves in the lower back suddenly become severely compressed.

"This causes a range of problems, including numbness in the skin around the anus (back passage), not being able to pee or control your bladder (urinary incontinence), and a loss of bowel control (bowel incontinence).

"Cauda equina syndrome requires emergency hospital admission and emergency surgery, because the longer it goes untreated, the greater the chance it will lead to permanent paralysis and incontinence."

If you've not been treated appropriately and this has led to the worsening of your condition, you should certainly consider making a formal complaint (at the very least). The Citizens Advice Bureau website has some good info on how to do this.

All best for 2016,

Tom

[coolpolitealex in reply to Hidden]

Thank you Tom ,But I don't know if it is as I can't get them to put it in writing, it's just that the last visit to my pain clinic the consultant said to me when I asked what was causing certain problems he said it was my cauda root, I know it was Cauda but I can't remember if he said root, as my memory is bad, I don't know where the word root came from , but I do think it was him, and the thoughts I'm having when they diagnosed me with Chronic Pain and registered me disabled, I thought it was odd, and even when they went on to treat me for prostrate cancer and my pain and problems in that area has never changed, at least the numbness and pain in the testicles , and if I stay on my feet or walk too far I become spastic like.

After the bike accident, I started to get a very odd feeling when I placed my head on my pillow at certain angle, but the sensations I had I stupidly ignored, but my lifestyle at the time made me ignore it, But eventually I was told by one neurologist (who told me he was retiring but he said you have one of four things and all are untreatable) but The pain consultant said I do not have any ataxia , so am left in a quandary as to what to do, as the Hosp I go to are saying I must have fallen since they diagnosed Chronic pain, so it is complicated as I have been going to this place for years.

But it was only after I asked for a second opinion that things changed, because I have not fallen, and I knew that chronic pain must have a cause to what is causing the pain.

But a few things have fallen into place as to the whole way that I have been treated by my Health Professionals, who I suspect may have known all along or at least suspected.

But I will talk to the CAB because I do not want other people to get treated like I have.

[coolpolitealex in reply to coolpolitealex]

To add a postscript to this, when I typed in cauda, all that came up was this Cauda Syndrome, and so when I looked it up, this site kept flashing this lawyers site and was very insistent , so I gave him my number and he rang me and he want's me to send him some letters.

Which I have not done, but am researching and looking at getting help as to what I want to do , it's very difficult as I am getting worse and I missed my last appointment due to mixing up where I was to go, and don't want to antagonise the Doctors and others as I am hoping they will send me another appointment without waiting month's.

We shall see, best Alex

[coolpolitealex in reply to Bananas5]

Well a lot depends on what is and isn't related to help, and what is and what isn't help to you personally, and can it come under health related and be of use to others, I would think, best Alex

[dtech]

Now we are all intrigued as to what you were going to post! Is it a Christmas mystery? Lol

[Bananas5]

It has to go up first Dan and nothing showed.

x

[coolpolitealex]

I would have thought that it was taken down, but working out what happened is not the point, it is to the matter why it was surreptitiously done, is the most relevant fact, methinks.

[Bananas5 in reply to coolpolitealex]

No No No it isn't.

It can only be taken down after it has been posted and someone has read it and complained. Pain Concern admin don't work like sneaky beaky. They mostly let us run the forum - only intervening when complaints go in or they find something against HU guidelines. Which incidently is rare.

Computers are strange things and maybe theirs didn't recieve your post.

Just put it up again if you want and stop trying to fathom out what happened.

Computer ate it!!

Pat x

[coolpolitealex in reply to Bananas5]

Yes yes , only joking, Just a little fun, are you trying to tell me computers make mistakes ??

[Bananas5 in reply to coolpolitealex]

Whats was that saying from 40 yrs ago?

To err is human.

To completely mess it up takes a computer.

And that;s the clean version!!

Oat x