CJD warning at Romford Hospital Friday 1st April 2011

[Beaaware]

heres the link

www.romfordrecorder.co.uk/news/cjd_warning_at_romford_hospital_1_847940

keeping you upto date, Bea

What a crap, badly spelled, scaremongering article.
Who is calling for a change in DOH policy? It doesn't say.

All it does is say that the hospital sent out 21 letters LAST YEAR, as a precaution, to tell people that they have had operations using instruments that were used on the child of someone with CJD and that no one has ever caught CJD in this way.

Then they interview a 35 year old chap, as far as I am aware CJD occurs in the elderly.

precautions maybe but think about the knock on effects, life insurance, mortgages, these poor innocent people have basically just been given a death sentence via their hospital and can no longer lead normal lives like you & me, how would you like to receive such devastating news especially when hospitals can actually de-contaminate instruments of rogue prions, it really is bonkers imo they they don't do this.

Can I ask what your obsession with cjd is about?

nikki1978, what I fail to understand is that so many people have no idea as to what they are being exposed to, for instance blood is not screened for human mad cow's disease (vCJD), so anyone in the UK who is given a blood transfusion is being put at risk of transmission, also we do not de-contaminate surgical/dental instruments for this either. What we are currently seeing is media coverage of what has been going on for years, ever since the whole saga of BSE started, many innocent people are told after their operations that they may have been exposed to vCJD. My aim is to raise awareness, human mad cow's disease has most definitely not gone away but it is kept very quiet so that the vast majority of the British public 'think' it will not effect them. Hopefully you will not be faced with the dilemma of ever receiving contaminated blood or contact with contaminated surgical/dental instruments but I hope I have alerted you to something which is very serious. Did you know that dentists have to keep seperate instruments for people whose relatives have died from CJD/vCJD? Did you know that anyone who has lived in the UK since 1980 - 1996 is deemed to have been exposed to human BSE and cannot donate their blood or organs anywhere in the World except in the UK.
Obsessive maybe but I think I have a point.

fredapayne are you the same poster as Beaaware?

yes name changed

nikki, excellent question.

I dont know if Beaaware / Fredapayne has shares in decontamination equipment or just a weird obsession with an ongoing major disaster that no one seems to have noticed and seems to have no victims. Also it should be pointed out that CJD and vCJD are different diseases and affect vastly different ages of people. And as far as I am aware, you can only confirm the diagnosis after the patient has died, by examining the brain tissue.

Scaremongering / paranoia / business opportunity... not sure which.

Another person who I agree with wholeheartedly.

Right - so now I am wondering about safety of my dental hygiene visit next week. [Always blood involved cos I don't always floss and they are 'thorough'].
Bloody hell something else to worry about!

much more likely to give you problems

I'll floss my teeth tonight and go to my hygiene visit next week Grumpystiltskin! Thanks for the article.. guess I asked for that!

So as not to confuse you all I have switched back to my original name as I know you all like to read my posts. I would just like to make it clear to those who come on here to try make out that what I am saying is a load of rubbish, I don't particularly care if you believe me or not, my aim is to raise awareness & not to scare anyone, you can choose whether to believe what is out there in the public domain about BSE/CJD/vCJD all I am doing is posting the same info on mumsnet. If you are happy to go to your dentist/hospital and not be informed about vCJD prion risks in blood & stainless steel instruments that is your choice. At least by informing you on this website of the risks you have better knowledge which you will not be given by the Department of Health or your GP/Dentist. For the sceptics out there I would like to ask you why some private hospitals use disposable instruments for certain tests? if there is no risk of contamination then why is this? I would also like to ask you why are British citizens are not allowed to donate blood & organs overseas? All of these precautions must mean something or are there other reasons, enlighten me please.

2BoysTooLoud, I bet your dental hygenist will be well protected from your blood coming into contact with their face/hands, ask if the instruments they will be using have been decontaminated from vCJD prions and if any previous patients are relatives of vCJD victims. They will probably tell you that you are at very low risk of contamination but they will be unable to tell you that you are 100% risk free.

mmm... I hate having something else to worry about Beaaware.

Well my dentist doesn't ask if any of my relatives have died from CJD so how can they keep seperate instruments?

VivaLeBeaver, not sure what the procedure is with dentists, whether you should volunteer the information about relatives who have died from CJD/vCJD or if they are required to ask you. I have read that they do keep separate instruments though for certain people who have been exposed to lethal prions. I am sure if you dig around on the web you'll find this information. Another useful website is justiceforandy.com.

I think it would help your cause if you were to link to peer-reviewed scientific / medical articles that back up your claims. Directing people to "dig around on the web" is not very useful, not does it build credibility.

Right ds just had his op and the consultant has been fab spending a lot of time to put our minds at rest after being scared witless by Beaa's posts.

Basically there is a huge difference in quality between single use and re-usable instruments.Single cost around £60 the others £3000.When surgeons tried single use complications/bleeding etc rocketed.There is no plot in the use of reusables they're just massively better.

He also said the risks of getting CJD are absolutely miniscule.He said as a parent he wouldn't even give it a moments thought,there are plenty more worrying things to consider with surgery which themselves happen in very small numbers.CJD is the last thing you need to worry about.Dp spoke to him not me so can't quote the exact words.

Hardly anybody has actually contracted CJD through surgery.

I've learnt my lesson when worried, speak directly to the expert not obsessive posters or Google.

Many,many thanks all who posted on my other thread.It helped a lot at a difficult time.It also gave dp the confidence to ring said surgeon. They're surprisingly human and very approachable-another lesson learnt .

Ds is doing well tucked up in my bed-tonsil free!!!!!

MilaMae, Glad your fears were put at ease by your consultant and that your DS is well. My consultant said exactly the same thing to me before a major operation, not 100% risk free but miniscule. If only they would use the technology available to decontaminate all surgical instruments then operations would 100% risk free to everyone and people like you & me would have no reason to be worried, but as it stands we are exposed whether we like it or not. As I have said there are several routes of transmission and nobody can be sure how people who develop this disease actually get it, not even consultants know this.
There are still unanswered questions here, why are people receiving letters in 2011 from their hospitals telling them that they may have been exposed to CJD/vCJD via the surgical instruments used (as in the newspaper articles posted) if the risks are miniscule?

Some facts on vCJD:
FACT: Every one over the age of 13 has eaten at least 50 BSE infected meals/ingested toxic BSE material via medicines/vaccines (including vegetarians). One in a thousand of the UK populationn is probably carrying vCJD (Prof.John Collinge world expert UCL May 2008)

FACT: We currently filter/lecuodeplete donated blood, (costing millions since 1998) its not working as one of the current victims of vCJD had a blood transfusion in 2003. All blood donors should be individually screened before giving blood, development of highly sensitive tests are being blocked by Whitehall.

FACT: All blood bags/components since July 2007 have the disclaimer 'RISK OF ADVERSE REACTION/INFECTION INCLUDING vCJD'. This is not widely known.

FACT:Government statistics are failing to record the true numbers of vCJD accurately, figures are being deliberately manipulated. UK herds are still affected by BSE.

FACT: 133 UK children some just days/months old have lost a mother or father to vCJD.

FACT: Blood screening tests for individuals would show prevalence in the UK population, screening would also trace back the source of vCJD infection. This is something the government and architects of BSE are trying to block.

FACT:vCJD has not gone away and continues to kill on a regular basis. There are victims continually dying of vCJD across the UK/globally, some as young as 21 years old.

FACT: The most effective way to transmit the rogue prions that causes vCJD to a human being is intravenous.

FACT:One blood donor can give blood over 120 times during a life-time. Without screening individuals one donor could put thousands at risk. Organ donors can also pass on vCJD.

FACT: Every year about 2.4 million blood donors give blood in the UK. 'Thousands of blood donors may be carrying vCJD' (statement from SABTO committee member October 2008).

FACT: Experts believe that the incubation period for vCJD can be between five & fifty years.

FACT: Three mothers in the terminal stages of vCJD gave birth by caesarean section in UK hospitals. these mothers have sadly since died but their children survived, two of these youngsters remain healthy but the third child a girl suffers severe brain damage/all the symptons of vCJD/. Mothers and patients that used the same delivery suites/theatre equipment after these tragic births, now live with the prospect of being 'at risk' of developing vCJD.

FACT: Two young men from Southampton died within weeks of each other of vCJD. Both had received polio vaccines from the same batch. This batch was one of over 80,000 doses used throughout the UK during the 1990s. Vaccines are processed using material from blood donors & cattle.

FACT: At least 22 UK blood donors have died of vCJD, recipients of those 22 blood donors have also died of vCJD, many never traced.

FACT: The rogue prions that cause vCJD are not alive so cannot be killed, freezing, radiation, sterilsation, burning are unable to kill these lethal pathogens. they adhere to metal and medical equipment and can remain deadly and active for years.

FACT: We face an epidemic of dementia cases, experts believe there is a link between many cases of vCJD/dementia and BSE. Thousands of these individulas have been life long blood donors.

FACT:The DOH have developed a diagnostic blood screening test, why is'nt this public knowledge and available to families who have been affected? Why is the development and mass use of this diagnostic test being veoted by Whitehall?
Our blood supply and donated organs must be safe/free of vCJD.

Mila sooo pleased your lovely DS is doing so well, you have been in my thoughts. Your Consultant sounds like a bit of a star, and hopefully your anaesthetist was equally reassuring.

As for Beaaware

follyfoot

Quite a good article here explaining the relative facts/risks/concerns about transmission.

onlinelibrary.wiley.com/doi/10.1111/j.1423-0410.2009.01161.x/full

Summary: 219 cases (in 50 countries) of vCJD, of which almost 80% were in the UK

4 cases are known have occurred as the result of blood transfusion from people with disease. (before their disease been diagnosed)

None known to have been transmitted from instruments.

Thanks for your summary sausagerolemodel. Article not the most digestible thing to read at this time of day! Glad all went well milamae.
[Beaaware your 'facts' are scary....].