Turmoil of patient at risk of deadly brain disease after surgery at Swansea Hospital

[Beaaware]

Another terrible story in the papers about a patient who had eye surgery at the Singleton Hospital, Swansea and has been told in writing that she may now have been exposed to CJD/vCJD through possible contaminated instruments which were used on a previous patient, this previous patient has either gone onto develop CJD/vCJD or is considered high risk (but this must mean they are showing symptons for the alarm bells to be ringing).

here is the link to the news article:
www.thisissouthwales.co.uk/news/CJD-PATIENT-TURMOIL/article-3387091-detail/article.html

The surgery took place between 2 & 4 years ago according to the article and the people involved are at an 'extremely low risk'. There is no reason to believe that the original 'high risk' patient has developed the disease or is showing symptoms - that's your own conjecture only. I think the hospital has done the right thing in keeping people informed but they are also at pains to point out that transmission is very unlikely and that there is very low risk all round. I don't think this story should be blown out of proportion to suit your own political aims.

My political aims are to get our government to implement safety measures to ensure that none of us are exposed to mad cows disease, how would you like to receive a letter telling you that the instruments used during your operation are highly likely to be contaminated, we all know that prions cannot be destroyed by normal sterilisation, how would you like to live with this knowledge it must be devastating . If you watched Newsnight on Tuesday this week you will have seen that even the governments own scientist Prof. John Collinge is extremely concerned that we are not using the product he developed to clean surgical instruments of rogue prions.
I am sure hospitals do not contact patients lightly with this news, a previous patient must have either developed the symptons of CJD/vCJD or died from it otherwise what would be the point in contacting people to say that they may be at risk, does'nt make sense.
Of course Chil you really do not have to read any of my posts they seem to irritate you, hopefully you wont be one of those unfortunate people who get a letter, there are only an estimated 40,000 people walking around carrying vCJD in the UK.

What are the safety measures that you want to see implemented in addition to those already in place?

The official statement from the hospital says explicitly that the patient (who may not be identified) does not have CJD, but is at high risk (I've no idea on what they base this, but have no reason to think they're wrong). So the surveillance is picking up even very low risks of exposure.

I read there have only been 6 cases of iatrogenic transmission of CJD worldwide.

Have been looking further into this - apologies, cannot stand up that figure of 6, but it does seem that iatrogenic transmission (other than transplant, transfusion or the now replaced growth hormone) is very rare and the number of cases is always described as "few".

If your posts irritate me Beaware, it's because you're always presenting the CjD situation in a rather overblown, scaremongering way. You're still making big assumptions that " a previous patient must have either developed the symptons of CJD/vCJD or died from it" with no evidence for that whatsoever and I think, therefore, your argument is made weaker because, if you're exaggerating that, you're almost certainly exaggerating everything else.

Chil1234, tell me your theory on why 2 hospitals would send warning letters to 59 innocent patients advising them that they may be at risk of CJD/vCJD due to contaminated instruments, the decision to send devastating letters like this would not be taken lightly would it? How on earth would the prions be on the instruments if no previous patients were harbouring this? It is obvious is'nt it? But as you doubt me I'll see if I can get in touch with one of the patients for you and ask them why their hospital felt the need to tell them this.
Cant see why you think I am exaggerating I only post what I read and I do have the right to worry about this, but I can understand why some folk dont especially if it has never affected them.
No harm in informing and having views, free country.

No it isn't obvious. I think your interpretation is coloured by your own experience. What I'm reading is that someone 'at high risk' (but not confirmed as either infected or dead as you are determined to make out) could have placed others 'at very low risk'... and that it is a responsible precaution of a health service regularly beset by lawsuits to advise the people 'at very low risk' of the facts.

The article is informative. The health authority are informing patients responsibly. You have every right to be worried for yourself but you do not have the right to scare-monger and exaggerate. There's a difference.

As I said Chil I will try and find out the facts for you as it seems even you have no idea what the reasons for being classed as 'high risk' actually are. I still cant see your point about scaremongering though, did you not watch Newsnight on BBC2 on Tuesday about this very subject, would you say this programme was scaremongering?

I doubt you'll get very far with finding out more: NHS have explicitly said they are not releasing more information about the high risk patient (as it would breach confidentiality so to do). They have said the patient is high risk, but does not have diagnosed CJD. Contacts are informed, in line with NHS policy, even when the risk is very low.

meditrina, what is the role of the UK CJD incidents panel? My understanding of this incidents panel is that they are alerted when a person is suspected of having CJD/vCJD and then a questionnaire is taken from the family of the persons history i.e operations, blood transfusions. Why is the CJD incidents panel mentioned in the article if the high risk person has not been diagnosed as you say? I am still puzzled by this 'high risk' surrounding someone who we are led to believe has not been diagnosed, high risk in what sense, how could they not be infected if the CJD incident panel were involved, very strange.
Unless this is linked to contaminated blood, it is possible that the 'high risk' patient mentioned had an infected blood transfusion prior to or during their operation and their blood donor had developed CJD/vCJD in which case all recipients of this blood would have been traced somehow maybe by the CJD incidents panel resulting in the 'high risk' patient who in turn has put the surgical instruments at risk.
If there is any question that surgical instruments have prion infectivity then at some stage they would have come into contact with a patient who has the disease.

If only the risk factors were not there in the first place these stories would not be around would they, the awful thing about human mad cows disease is that there is no treatment available, so it is a death sentence, the DOH could so easily stop this problem by using the sterilising methods that the governments own scientists have developed and recommended. You would think that after 26 years since the BSE crisis reared its ugly head the government would have got to grips with this problem, but it seems they have'nt and people are still dying from the human form of BSE all these years later, shocking.

I'm quoting the information that has been publicly released by NHS about the high risk patient. I do not have any privileged insider information. Do you?

Me neither, but I do know that you are entitled to know if your blood donor is alive & well if you have had a blood transfusion so I would imagine the same applies in this instance regarding low/high risk infection via surgical instruments. There seems to be so many cover-ups over this whole business its ridiculous, what with CJD/vCJD surveillance teams, BSE experimental farms, compensation for victims, there should be more openness, honesty & transparency with the whole human mad cows disease saga. Like for instance how many people are actually being admitted to the specialist prion hospital in London each month/year with vCJD, the DOH should reveal the true statistics and not fool people into believing that this no longer exists.

Figures for CJD in UK are openly published eg here.

meditrina, would you mind me asking you if you think that the DOH & SABTO should get a grip on this and protect the public from vCJD via surgical instruments & contaminated blood, I honestly do not think that I am the only person in the UK who thinks they should.

Before I opened this thread I could guess who the OP was going to be.

WTF? Is there something here I am missing?

gold star for you stealthcat

ShipsThatPass, I doubt you are missing anything if you read the whole thread [confused as to why some people cant read wtf]

She's a bit obsessed is this beaaware....

Blimey I can think of millions of other things to worry about.

From what I read when googling the patients mother had it.

Thanks Beaaware you've got what you wanted.I 'm now shit scared,have my consultant ringing us Tuesday and we are both agonising over wether to cancel my son's long awaited op on Friday.

You've made your point.

Oh Mila, please dont take any notice of her, she only ever posts about this topic, a woman absolutely obsessed. Talk to your consultant about your fears and am pretty certain he will be able to allay them.

There have only been 6 cases in the whole of the world EVER that have been transmitted in this way, and they were all following surgery on the brain or spinal cord. And none since the 1970s.

You might as well wear a crash helmet in case a meteorite lands in your back garden. That is the reality.

Milmae, what do you mean 'Ive got what I wanted', how daft. You were the one who expressed your fears about CJD on your thread not me. Would you rather not be informed? What is so wrong with putting links to newspaper & Newsnight (BBC2 29/3) about this issue?
I can tell you one thing your hospital/consultant will not voluntarily tell you about CJD/vCJD before an operation and very unlikely to offer you a patient leaflet about the risks and why the risks happen.
If the Department of Health had nothing to hide about CJD/vCJD then why would they be sending letters to patients after their operations?
The UK is classed as a high risk nation (quote Guardian magazine 2001) for human BSE, but we do not carry out tests on donor blood or surgical instruments.
If my child was faced with a tonsil removal operation then I would insist on single use instruments, rather than be told he/she may be a low,medium or high risk of CJD/vCJD if it ever came to light that the instruments may be contaminated. I dont think any consultant could guarantee that the stainless steel instruments are 100% free from rogue prions, but please correct me if I am wrong.
What makes me laugh about comments from people like follyfoot is that they seem to be content to accept the 'risk' scenario, I dont get this when the technology is available today to prevent these risks.
Follyfoot, have you got insider info on the 6 worldwide cases? are you sure? 59+ people have just been notified that they have been put at risk (Newsnight BBC2 29/3/11) after their ops, this info has only come to light because 2 patients have chosen to speak publicily, how many may go on to actually develop CJD/vCJD nobody knows, the true facts and figures will never be known and kept under wraps for certain.
I'm afraid that people should be concerned this is nothing new, but blame the government not me.

You only ever post on this subject, and unforgivably so on Mila's thread about how scared she was for her son.

There is no evidence whatsoever that anyone has contracted CJD this way since the 70's. And those that did (over 30 years ago) were having other people's neurological matter eg dura put into their bodies.

Seriously, stop peddling this stuff.

follyfoot I'm afraid we will have to agree to disagree, but no I will not stop peddling this stuff especially when it is newsworthy. My best advice to you is dont read my threads.

I'll carry on reading and responding.