Volume 6: Human Health, 1989-96
5. Human health developments: 1 January 1991 to 31 March 1995
Government pronouncements, media concerns and public reaction
Public statements by Dr Calman following reports of CJD in farmers and teenagers

Public statements by Dr Calman following reports of CJD in farmers and teenagers

First farmer and Dr Calman's statement of 11 March 1993

5.314 On 4 August 1992, Dr Wight minuted Mrs Lynda Lockyer (Head of the Administrative Branch, Environmental Health and Food Safety Division, DH)and Dr Roger Skinner (Principal Medical Officer, DH ¹) informing them that Dr Robert Will from the CJD Surveillance Unit (CJDSU) had, confidentially, reported a case of probable CJD in a farmer who had had a dairy cow with BSE on his farm. ² She said that:

The current concern is that I understand the staff looking after him are aware of his probable diagnosis and of the fact that he had a cow with BSE, and the case could become public.

5.315 She added that the diagnosis had not been confirmed and that there was no direct evidence to link BSE and CJD. She said MAFF had not been made aware of the matter due to 'sensitivity and uncertainties' surrounding the case and because Dr Will would be put under immediate pressure to provide more information to MAFF Ministers. In a handwritten note on the minute Mrs Lockyer advised Mr Murray that MAFF should be alerted to the case.

5.316 On 13 August 1992, Dr Wight minuted the CMO informing him of the case of probable CJD in a 60-year-old farmer. ³ She suggested that DH take the following line:

We are aware of the development of probable CJD in a farmer, though the diagnosis has not been confirmed. To date, there is no scientific evidence to link BSE with the human illness CJD and the information available in this case does not change the situation.

5.317 Dr Wight also advised that DH and MAFF Ministers and the DH press office should be alerted and suggested that Sir Kenneth Calman speak with the CVO personally 'in view of the sensitivity and the need for confidentiality'. ⁴

5.318 On 21 August 1992, Mr Thomas Murray minuted Mrs Virginia Bottomley (Secretary of State for Health) briefing her about the background of the case and the official line to take in case of media interest. ⁵ Mr Murray recommended that no action was required pending investigation by the CJDSU and that he had spoken to a MAFF official to ensure that their Ministers were suitably briefed. He also stated that the facts would be presented to SEAC, who would 'advise on the implications for Government policy'. On the same day, Mr John Maslin (Animal Health Division) minuted Mr Soames (Parliamentary Under-Secretary, MAFF) stating that DH had informed MAFF about the case and that any queries were to be referred to DH. ⁶

5.319 SEAC discussed the farmer's case at their 13th meeting on 15 October 1992. ⁷ Dr Will, presenting the case, noted that the farmer's cow was confirmed as having BSE in 1989 and that the farmer had developed CJD two years later. Dr Will advised SEAC that he intended to publish a report of the study that would probably conclude that 'there was no evidence that this was not a chance occurrence of normal disease'. Dr Will also reported that his study at the CJDSU had failed to reveal a correlation between occupational backgrounds and CJD to date. ⁸

5.320 On 22 October 1992, Mr Murray again minuted Mrs Bottomley with an update on the case of the farmer. ⁹ He informed her that he had since died and the case had now been confirmed through pathology. He also noted that Dr Will was going to report the case in the medical press in line with normal practice and that the line to be taken with the media had changed to reflect the new developments. The new revised line to take was:

We are aware of a confirmed case of CJD in a farmer, who has had a cow with BSE. To date, there is no scientific evidence to link BSE with the human illness CJD and the Tyrrell Committee have advised that the information available in this case does not change this situation.

5.321 On 15 February 1993, Mr Kevin Taylor minuted Mr Lowson and the SEAC secretariat after reading the article which Dr Will was intending to publish in the Lancet. ¹⁰ He concluded that 'I don't think we should be too upset if it isn't published'. He did, however, suggest three amendments if still possible:

1. The CJD case should be dated, as the BSE case already is, to indicate the time interval which separated the two cases.
2. ...The sentence 'He had drunk pooled milk from the herd which included that from the affected animal' will mislead the uninformed. It needs to be made clear that milk from a cow, which is suspected to be affected with BSE, cannot be drunk or added to the bulk milk produced by the rest of the herd.
3. ...The phrase 'and a casual link with BSE is at most conjectural' should be deleted so that the first part of the statement would stand as a clear statement that the CJD case was likely to have been a chance phenomenon.

5.322 None of these amendments appeared in the published version of the letter.

5.323 On 6 March 1993, the Lancet published the article by Dr Will and others under the title 'Creutzfeldt-Jakob Disease in an Individual Occupationally Exposed to BSE':

This is the first report of CJD in an individual with direct occupational contact with a case of BSE and raises the possibility of a causal link. About 120 000 individuals work in dairy farming in England and Wales and over one-third of farms have had at least one case of BSE. The national incidence of CJD is about 0.5 cases per million per year and a crude calculation suggests that in the 2 ½ years since the start of our survey, we would have expected about 0.05 cases in dairy farmers with a BSE-affected herd. This calculation takes no account of other groups with increased exposure to affected animals and we have found no case of CJD in other potentially 'at-risk' groups, such as abattoir workers or veterinarians. We have identified individuals [with CJD] with occupations (eg, vicar, art teacher) that are statistically less likely to have occurred by chance than potentially less 'at-risk' occupations.

The course of symptoms and signs in our case, the investigations (including electroencephalography) and the necropsy findings are consistent with previous experience in CJD. Risk factors for CJD, including iatrogenic transmission and genetic predisposition, have been largely excluded by the history and gene analysis. The Southwood Committee recommended surveillance of specific occupational groups because of the risk of direct inoculation of bovine tissue. The history suggests no such occurrence in our case and the only possible direct route of cross-contamination was by drinking milk. Milk does not contain detectable titres of infectivity, even from animals clinically affected with natural diseases and epidemiological evidence (eg, the absence of vertical transmission in kuru after breastfeeding) largely precludes milk as a route of transmission in spongiform encephalopathies.

CJD in our case is most likely to have been a chance finding and a causal link with BSE is at most conjectural. ¹¹

5.324 The letter became the subject of much media interest. It was reported in The Times in an article entitled 'Farmer in BSE case dies of dementia' ¹² and discussed in an article, 'Eating People is Wrong'. ¹³ Today newspaper published an article entitled 'Mad cow disease and the dairy farmer: Is this the link the world dreads?' and quoted 'one of Britain's leading neuro-pathologists' (who was unnamed) as saying the farmer's death was a 'disquieting development'. ¹⁴ The Daily Express published an article entitled 'Mad cow link to death of farmer' ¹⁵, and the Daily Mail published an article entitled 'New "mad cow" fears after BSE farmer dies of brain illness'. ¹⁶

5.325 On 9 March 1993, an article in the Daily Telegraph entitled 'Farmer dies of rare brain disease after BSE hits herd' quoted Dr Will as saying that it had not been possible fully to assess whether the farmer had inhaled contaminated dust from the suspect cattle food or had been infected through cuts or grazes. ¹⁷ He was also reported as saying, 'This case could just be a coincidence. We felt it was right to be open and report what we had found.' In the same article Mr Kevin Taylor (Assistant CVO) was reported to have said: 'I don't think that a link between this case and BSE is even conjectural.' He also rejected fears that the farmer may have contracted the illness from milk.

5.326 On 10 March 1993, the BBC Radio 2 presenter Jimmy Young interviewed Professor Richard Lacey, who commented:

The good news is that this farmer, I think, got it too soon. If BSE produces this disease in people it will take, perhaps, another five or ten years. So I think this is a one off coincidence and I don't think this farmer got his disease CJD, from BSE. But nevertheless the underlying worries remain and I think it's reasonable that this issue should be discussed. ¹⁸

5.327 On 10 March 1993, a briefing was prepared for the Prime Minister and the Lord President by Mr T Hepburn of HEF(A), ¹⁹ with clearance from DH officials, regarding the issues surrounding this case and the line to be taken by the Government. ²⁰ The briefing repeated the line to take which had been suggested in previous minutes relating to the death of the farmer:

The Government are aware of a confirmed case of CJD in a farmer, who had a cow with BSE. To date, there is no scientific evidence to link BSE with the human illness CJD and the Tyrrell Committee have advised that the information available in this case does not change this situation. ²¹

5.328 On 11 March, Mr David Naish, President of the National Farmers Union (NFU) from 1991 to 1998, called for a statement from the CMO. ²²

5.329 Sir Kenneth Calman told us that he had met Mr Gummer to discuss a possible press release on the farmer's death, given the press speculation:

In view of the fact that this event resulted in intense media interest, I met with Mr Gummer to discuss the release of a Press statement to allay public fears . . . We both agreed that it was necessary to reassure the public that previous advice had been reconsidered and remained unaltered . . . ²³

5.330 Mr Gummer also referred to this meeting in his statement to the Inquiry:

I subsequently met with the CMO, Dr Kenneth Calman, to discuss these reports. We agreed that given the press speculation it was important that the CMO should issue a press release making it plain that the Tyrrell committee had considered this case, which had been reported to the National CJD Surveillance Unit in August 1992, and had advised that it did not alter the advice that had previously been given. ²⁴

5.331 On 11 March 1993, Dr Calman issued a public statement on CJD which repeated the assurance about the safety of beef given by his predecessor, Sir Donald Acheson, on 16 May 1990. ²⁵ Dr Metters was involved in discussing drafts of this statement and agreed with the wording selected by the CMO. ²⁶ The statement read:

Following the death of a farmer from CJD I am aware of media reports that have speculated about a link between this rare human condition and BSE.

I wish to emphasise that there is no scientific evidence of a causal link between BSE in cattle and CJD in humans. The Tyrrell Committee have considered the details of this case and have advised that this does not alter the advice that has previously been given.

That advice issued on 16 May 1990 by my predecessor, Sir Donald Acheson, that beef can be eaten safely by everyone, both adults and children, including patients in hospital, remains valid.

The Department continues to monitor developments in this area closely and will carefully consider all new evidence as it emerges. I am confident that all necessary action has been taken to safeguard public health.

NOTES FOR EDITORS

Cases of Creutzfeldt-Jakob Disease (CJD) are notified by Consultants to Dr R G Will of Edinburgh. Dr Will is running a long-term study of CJD funded by the Department of Health: this should allow detection of any spread of infection to humans, although this possibility is considered remote. In June 1992 Dr Will submitted a report to Parliament on the results of his study into the incidence of CJD in the UK, the conclusion of which is as follows:

Descriptive epidemiological data is now available on CJD in the UK between 1980 and April 1992. There has been no significant change in the incidence of CJD, the clinical features of CJD, or the graphical distribution of cases. Analysis of the occupational distribution of cases in the first two years of the prospective study, including a case-control study, shows no significant increase in the risk of CJD in relation to specific occupations. There is currently no evidence of any change in the epidemiological characteristics of CJD following the advent of Bovine Spongiform Encephalopathy (BSE). ²⁷

5.332 After the release of Dr Calman's statement, on 13 March 1993, the Daily Mirror reported:

A top scientific expert yesterday slapped down Government claims over 'mad cow' disease.

Chief Medical Officer Dr Kenneth Calman had insisted BSE could not cause a related brain disease in humans.

But Professor Richard Lacey said he was wrong. Evidence suggested BSE was highly contagious and could infect different species, including man.

The warning came after it was revealed that farmer Peter Warhurst, 61 - whose cattle had been infected by BSE - had died of the brain disease Creutzfeldt-Jakob (CJD). ²⁸

5.333 On 23 March 1993, Mr Robert Lowson wrote a minute to Miss Houghton (Assistant Private Secretary to the Minister) in preparation for a 'Minister's Meeting to Review Progress on BSE' the following day. Mr Lowson suggested points that might be covered, including the following:

(v) liaison with DOH. It was not easy to get the CMO to make a statement in response to recent press speculation about a possible link between BSE and human disease, and it might be worth considering how to ensure that in future they move more quickly. ²⁹

5.334 In his oral evidence to the Inquiry, Sir Kenneth Calman defined his understanding of the word 'safe' as follows:

I think this is an issue which is undoubtedly central to this Inquiry, the meaning of the word 'safe'. If you look at 'safe' in if you like ordinary speech, and this is the way which perhaps is the best way to explain it, if we talk about a 'safe driver' we do not mean that that driver will never have an accident. If you talk about a 'safe pair of hands' you do not mean to say that that person will not have a problem. In ordinary usage 'safe' does not necessarily mean no risk. Indeed we quite often use words to qualify 'safe' like 'completely safe' or 'absolutely safe' or 'reasonably safe', so that 'safe' is a word not always associated with zero risk. In some of the reading around this, and I have not tabled it for the Inquiry, there is an Institute of Standards documentation which was published really beginning in the 1980s, moving through to recent editions which describe 'safe' as free from unacceptable risk or harm. So that in ordinary usage 'safe' does not mean no risk. And of course in relation to this particular Inquiry many people recognised that 'safe' did not mean no risk and actually stopped eating beef for example. So, in ordinary parlance I think 'safe' certainly to me did not mean no risk. ³⁰

5.335 Sir Kenneth was asked:

. . . whether, as far as the public were concerned, the message they were getting is you cannot catch BSE from beef, period. Not: we are making quite sure that the bits which might possibly infect you are being removed.

5.336 He replied:

I think it - for me it was the latter, because that is why we had taken the action. Therefore it was implicit if not explicit that because of the possibility that beef might transmit the disease to humans, it was important to take action, feedstuffs, SBO ban and all the other things that have been introduced, that is why we did it. But having done that, we think that beef is safe, safe in these terms, in those terms not necessarily meaning zero risk. ³¹

Discussion of Dr Calman's statement of 11 March 1993

5.337 We have already criticised the terms of the public statement made by Sir Donald Acheson after the discovery of a case of SE in a cat (see Chapter 4). We consider that both the circumstances and the terms in which Dr Calman repeated that public statement in March 1993 leave him open to a similar criticism. The essence of that criticism is that the unqualified statement that beef could be eaten safely was liable to be interpreted by the public as reassurance that BSE could not be transmitted to humans.

5.338 We consider that this misinterpretation was particularly likely having regard to the fact that Dr Calman's statement was made in the context of concern as to the possible transmission of BSE to a farmer. On 13 March 1993, the Daily Mirror sought to summarise Dr Calman's statement as follows:

Chief Medical Officer Dr Kenneth Calman had insisted BSE could not cause a related brain disease in humans. ³²

5.339 This demonstrates that Dr Calman's statement was indeed misinterpreted in the manner that we have suggested was likely.

5.340 Sir Kenneth Calman sought to meet our concern about the terms of his public statement. ³³ He said:

31. As the Inquiry will be aware, the press statement was specifically prepared following intense media speculation surrounding the first reported case of CJD in a dairy farmer published in the Lancet on 6 March 1993. ³⁴

32. At the time that this statement was issued, in 1993, BSE was a known entity and had been with us for a number of years. Successive expert advisory committees had been established by Government to advise on all aspects of transmissible Spongiform Encephalopathies relevant to both animal and human health, with emphasis in the areas of surveillance, research and operational issues. In all of these discussions and reports produced, the possible transmission to humans was considered, hence the action taken to remove any known possible transmissible material from the human food chain.

33. As a result of these committees' detailed considerations of developments in the spread of BSE and research reviews, recommendations were made to Government which were adopted and published within a short period. This process commenced at the time of the establishment of the Southwood Working Party in May 1988, who published their findings in February 1989. ³⁵ The Inquiry will be aware of the conclusions reached by the Southwood Working Party at the outset, not least the acknowledgement by them that the spread of BSE had potential implications for human health.

34. As a result of those initial (and indeed subsequent) recommendations, extensive legislation was introduced through Government which sought to reduce (and ultimately stem) the spread of infection between cattle and reduce the acknowledged risk of any remote possibility that BSE could be transmitted to humans.

35. Both the Tyrrell Committee, and since 1990 SEAC continued that process based upon the same premise. As a result, by 1993, extensive legislation had been implemented based upon a series of recommendations by the various Government expert advisory committees, with the ultimate purpose of providing adequate safeguards to protect human and animal health and designed ultimately to protect against an acknowledged remote possibility of transmissibility.

36. It is only against this background that my 11 March 1993 statement can be viewed. ³⁶

37. As is evident from the background set out above, the possibility of transmissibility to humans was never discounted by anyone, not least the Government's expert advisory committees nor myself nor the Department of Health. There were a number of specific events which meant that the possibility of transmissibility to humans could not be discounted. Evidence was given by me at the Phase 1 oral hearings on this issue and the impact of these specified events influencing my thoughts on the remote possibility of transmissibility.

38. The press statement I made ³⁷ sought simply to set out my advice as Chief Medical Officer as to the position at the time, taking into consideration all the measures presently in place and having consulted with the Government's expert advisory committee SEAC. I emphasised in that press statement there was no scientific evidence of a causal link between BSE in cattle and CJD in humans. I confirmed that SEAC had considered the case in question and had advised that this did not alter the advice that had previously been given. I went on to state that the advice issued on 16 May 1990 by the previous Chief Medical Officer ³⁸ - that beef could be eaten safely by everyone, both adults and children, including patients in hospital, remains valid. The Inquiry will recall, however, that I went on to say that the Department continued to monitor developments in this area closely and would consider all new evidence as it emerged. I added that I was confident that all necessary action had been taken to safeguard public health. ³⁹

5.341 It seems to us that the points made by Sir Kenneth serve merely to underline the reasons for our concern. Since the Report of the Southwood Working Party a number of events had occurred which, as Sir Kenneth recognises in his statement, 'meant that the possibility of transmissibility to humans could not be discounted'.

5.342 When Sir Kenneth gave evidence in Phase 1 of the Inquiry he remarked that the transmission of BSE to zoo animals, to a pig and to cats:

. . . no more than strengthened my view that the potential for BSE to move from cows to humans was certainly real. ⁴⁰

5.343 In his first statement to the Inquiry Sir Kenneth had also referred to experimental transmission to a marmoset as:

Another bit of evidence, albeit experimental, which simply confirmed the fact that transmission was possible. ⁴¹

5.344 Dr Calman's contemporary appreciation of the risk that BSE might be transmissible to humans was sound. The range of species to which BSE transmitted, both experimentally and, more significantly, naturally through oral ingestion, was rightly seen by Dr Calman and by other scientists who were aware of these matters - including SEAC - as events which increased the likelihood that BSE might be transmissible to humans. This, however, was never made clear to the public. The repetition of the same message - 'it is safe to eat beef' - as a response to what were legitimate public concerns was misleading.

5.345 On 23 March, Mr Lowson commented in a minute for Mr Gummer's attention:

It was not easy to get the CMO to make a statement in response to recent press speculation about a possible link between BSE and human disease. ⁴²

5.346 The reason why MAFF wished the CMO to make a statement was, no doubt, because of the damage that public concern about BSE might cause to the beef industry. The evidence suggests that Dr Calman had reservations about complying with MAFF's request for assistance. Having decided to comply with that request and make a public statement, he should have taken great care to ensure that his statement fairly reflected his appraisal of the risk posed by BSE.

5.347 Dr Calman's statement (see paragraph 5.331) referred first of all to speculation about the possibility of a link between BSE and CJD following the death of a farmer from BSE. After emphasising that there was no scientific evidence of a link between BSE in cattle and CJD in humans, he went on to say that the case of the farmer did not alter the advice previously given, namely that 'beef can be eaten safely by everyone . . . including patients in hospital'. ⁴³ Any reader could naturally infer from his statement that it was safe to eat beef because there was no link between BSE and CJD - ie, that BSE was not transmissible to humans. The reader would not be likely to deduce that the statement that it was safe to eat beef was premised on the assumption that the tissues which were potentially most infective had been removed from the food chain. The sentence 'I am confident that all necessary action has been taken to safeguard public health' ⁴⁴ is not adequate to convey that fact.

5.348 Sir Kenneth Calman has emphasised to us that he was indeed confident that the SBO ban was being effectively implemented. This is no answer to our concern. He should have made it plain that it was on this basis that he was prepared to advise that it was safe to eat beef.

5.349 We bear well in mind the difficulties facing those called upon to make statements about BSE and the natural anxiety not to alarm the public. It was, however, important that a public statement by the CMO should deal with the risk posed by BSE clearly and accurately. DrCalman erred in not painting the full picture and, in consequence, gave a picture that was misleading. In so doing he fell short of the standard reasonably to be expected of the CMO.

DH response to the second report of the CJDSU, and the second case of CJD in a farmer

5.350 The CJD Surveillance Unit (CJDSU) published its second report in July 1993 referring to the death from CJD of the first dairy farmer, whose herd had included a cow affected by BSE. This is discussed in vol. 8: Variant CJD. Around the same time as the report's publication, it became known that a second farmer had CJD.

5.351 A minute from Dr Wight on 12 July 1993 to Baroness Cumberlege, DH Parliamentary Under-Secretary, and the CMO ⁴⁵ said:

DH were informed last week by Dr Will of the CJD Surveillance Unit in Edinburgh of a case of CJD (confirmed by brain biopsy) in a 64 year old dairy farmer, who is presently hospitalised near his home in the West Country. The farmer is thought to have had at least two cases of BSE in his herd, which were diagnosed in 1992. The farmer is reported to have assisted in calving and to have drunk the milk from his herd. The history does not suggest that this is anything other than a sporadic case of CJD.

. . .

We are taking expert advice with respect to this further case, and we will keep you informed. At the moment, the existence of this case is confidential. We therefore suggest the following line to take in case of enquiries:

'DH is aware of a second case of CJD in a dairy farmer who has had BSE in his herd. We cannot comment on the details of the case, but we know of nothing to suggest this is anything other than a sporadic case of CJD. The Department continues to monitor the incidence of CJD in humans.' ⁴⁶

5.352 On 14 July, Mr Kevin Taylor minuted the Minister, advising her of the case. He said:

We remain of the view that there is no evidence of transmission of BSE to man. It is pertinent that the clinical symptoms of CJD in this farmer became evident in May this year and the first evidence of BSE was apparent only 12 months before. In view of the long incubation period of this group of diseases, there is no evidence to suggest transmission from his cattle.

We propose to take no further action in this case unless details of the CJD case, and the BSE situation on the farm, became public knowledge. If they did we would need to reconsider the situation. ⁴⁷

5.353 Mr Taylor sent a further minute to the Minister, with copies to Mr Jack, Mr Soames ⁴⁸, Mr Packer, Mr Capstick, Mr Meldrum, Mr Eddy, Mr Lister and Dr Wight of DH (among others). He said that neither Dr Will nor the CJDSU intended to disclose the existence of the case or make any comment on it unless it attracted media attention. Information on the case would be included in the third annual CJDSU report, which would not be published for a year.

5.354 The minute included a briefing for Ministers based on the CJDSU's second annual report and noted:

. . . current information does not suggest that occupation is linked to an increased risk of developing CJD, and this includes occupations which might involve an increased exposure to the BSE agent. ⁴⁹

5.355 SEAC held a meeting on 20 July 1993, and Dr Will reported on the case of the dairy farmer. A fax from Professor Peter Smith (epidemiologist ⁵⁰) was read; he had concluded that 'the observation of 2 cases in workers in dairy farms with BSE-infected herds is disquieting, but the evidence is insufficient at this stage to draw any definite conclusions'. ⁵¹

5.356 The conclusions of SEAC were recorded as:

- there was no evidence that inoculation of BSE tissues from affected animals had occurred in this case;

- the fact that the illness in the cattle and the patient were incubating together indicated that it was very unlikely that there was a connection between the two;

- no conclusions could be drawn from the available statistical information.

It was agreed that:

- DH would draw up a statement on the basis of these conclusions. This would be used by DH in response to media enquiries about the case.

- transmission studies should go ahead on the two cases of CJD in dairy farmers. ⁵²

5.357 The statement by DH said:

The Government's expert advisers have considered this case and have agreed that there are no features that give cause for undue concern. The symptoms of CJD in this case were entirely consistent with the development of the sporadic form of CJD, and there was no evidence that the patient had been exposed to animals associated with BSE, or to their products, any more than many other farm workers involved in animal husbandry. Since the illness of the cows and the patient occurred within months of each other, the animals and the patient had presumably incubated disease in parallel for some years. It is most unlikely therefore that there is any direct link between the cases of BSE and the occurrence of disease in the patient.

Although CJD is a rare disease, and the total numbers of cases in the UK remain low, two cases might occur in dairy farmers by chance. It is therefore not possible to reach any conclusions about a connection between BSE and CJD as a result of these two CJD cases.

However, the Government's expert advisers have emphasised again the importance of continuing to monitor all cases of CJD in the UK particularly with a view to establishing any link through occupation or in any other way.

This case does not suggest that there is any need to revise the measures already taken to safeguard the public health against occupational and any other possible route of exposure to the BSE agent. ⁵³

5.358 The farmer died in early August, and an article then appeared in the Daily Mail on 12 August 1993 entitled ' "Mad cow" farmer dies'. It noted that the CJDSU had concluded that the second farmer's death was a 'chance occurrence'. A DH spokesman (unnamed) was quoted as saying that the Government's expert advisers had considered the case and 'agreed that there are no features that give cause for undue concern'. The DH spokesman also stated:

There was no evidence that the patient had been exposed to animals associated with BSE or to their products any more than many other farm workers involved in animal husbandry.

The animals and the patient have presumably incubated the disease in parallel for some years.

It is most unlikely therefore that there is any direct link between the case of BSE and the occurrence of disease in the patient.

Although CJD is a rare disease, and the total number of cases in the UK remains low, two cases might occur in dairy farmers by chance. It is therefore not possible to reach any conclusions about a connection between BSE and CJD as a result of these two CJD cases. ⁵⁴

5.359 The Today newspaper also published an article on 12 August titled 'Mad Cow fear as second farmer dies', repeating the statement from the Government spokesperson. ⁵⁵

5.360 In a minute advising DH of the press attention, Mr Lister provided an additional Question and Answer brief to DH officials to answer media or public queries about the case. Question 2 referred to the conclusions of the CJDSU:

Isn't it too much of a coincidence that two dairy farmers with BSE in their herds died from CJD?

The symptoms of CJD in this second case are entirely consistent with the development of the sporadic form of CJD. The occurrence of CJD in specific occupational groups with a theoretically increased risk from exposure to the BSE agent (eg farmers, vets, abattoir workers) is being studied by the National CJD Surveillance Unit in Edinburgh, set up on the recommendation of the Southwood Committee. The Unit's second annual report, presented to Parliament in July 1993, states that 'current information does not suggest that occupation is linked to an increased risk of developing CJD and this includes occupations which might involve exposure to the agent of BSE'. There is nothing about this latest case to justify changing that view. ⁵⁶

5.361 The case study of the second farmer was published in the Lancet in September 1993. SEAC reconsidered the case on 7 October 1993 and agreed that if a third case of CJD in a farmer appeared, an immediate full Committee meeting would be required. ⁵⁷

Dr Calman's statement on CJD in a teenager

5.362 On 13 January 1994, Today newspaper featured a headline article entitled 'Mad Cow Disease: The Human Link?'. ⁵⁸ This reported that 'a previously fit and healthy teenage girl' had contracted a fatal illness that could provide the link between humans and mad cow disease. The unnamed girl was Victoria Rimmer, a 16-year-old suspected of having CJD.

5.363 On the same day, Mr Roy Cunningham (Branch Head, HEF (A), DH ⁵⁹) sent to the Parliamentary Branch of DH, a paper entitled 'Briefing for No.10: "Today" article about BSE'. ⁶⁰ In the covering letter Mr Cunningham stated that the briefing incorporated suggestions from MAFF. A copy of the article from Today newspaper was attached and a background note explained that a 16-year-old girl was alleged to be dying from CJD; her mother had been reported as speculating about a possible link between her illness and eating hamburgers. He added that this was 'likely to fuel speculation about a connection between BSE, the disease in cattle, and CJD, a Spongiform Encephalopathy in humans'. ⁶¹ The briefing gave the following bullet points:

No link between CJD and Bovine Spongiform Encephalopathy (BSE) has been shown

Each case of CJD is monitored by the CJD Surveillance Unit in Edinburgh which is funded by DH and the Scottish Office. The Government is advised about BSE and other Encephalopathies by an expert committee which publishes reports regularly

The incidence of BSE in cattle is beginning to decrease. The number of suspect cases in the last three months of 1993 shows a 15% fall for the same period in 1992. ⁶²

5.364 On 25 January, Today newspaper published another article on Victoria (Vicky) Rimmer, entitled, 'Why is my girl dying?'. The article said:

. . . Today, at 16, Victoria Rimmer is dying of a cruel disease that has made an old woman of her . . .

And her despairing mother, helplessly looking on, believes that the sickness slowly killing her was caused by eating meat infected with 'mad cow disease'.

. . .

Yet even when doctors at Liverpool's Walton Hospital decided Vicky had CJD, the verdict was kept secret. Staff were ordered not to discuss it.

5.365 The article noted that Vicky Rimmer's grandmother believed Vicky contracted the disease through eating beefburgers and also reported an opinion on the case by Dr Stephen Dealler, a consultant microbiologist:

It is an inescapable conclusion that Bovine Spongiform Encephalitis has got into our food chain . . . I suspect there will be other cases involving young people.

We may find that a new form of CJD is developing out of the cattle disease - with slightly revised symptoms but with the same fatal effect. ⁶³

5.366 The Daily Mail and the Daily Mirror also reported on the case, with articles entitled respectively 'Mad Cow meal destroyed my daughter's life' and 'Give me back my life'. ⁶⁴

5.367 On 25 January, Baroness Cumberlege (Parliamentary Under-Secretary, Lords) wrote to the editors of the Daily Mail, the Daily Mirror and Today newspapers and said:

I should be grateful if you would give as much prominence to this letter as you gave to reports in today's edition of your newspaper of a teenage girl said to be suffering from Creutzfeldt-Jakob disease (CJD).

CJD is, as your story makes clear, a dreadful disease. I can understand and sympathise with the distress of the relatives of anyone who may be suffering from it. Apart from anything else, it is almost impossible to diagnose CJD except after an autopsy on the brain. So relatives of possible sufferers have the additional distress of not knowing whether the patient is suffering from the disease.

While I understand why you wish to report something which you may believe is evidence of a new and horrible risk to health, I do wish you had given much more prominence to the scientific facts than to the relatives' fears.

- You report the suggestion that eating hamburgers might cause CJD. No expert in the field has found evidence to support the idea that eating beef may be a cause of CJD.

- Whilst there has been speculation that there may be a link between CJD and the cattle disease Bovine Spongiform Encephalopathy (BSE), there is no scientific evidence of such a link; neither is there evidence of any link with scrapie, a disease of sheep which has been known for over 200 years.

I do not think you should have allowed your sympathy for very distressing circumstances to have led you to publish something which will obviously have alarmed people - and quite unnecessarily.

5.368 The letter concluded by referring to the previous 'beef is safe' statement made by Dr Calman in March 1993 (see paragraph 5.331). Baroness Cumberlege said:

The Department continues to monitor developments in this area closely and will carefully consider all new evidence as it emerges. I am confident that all necessary action has been taken to safeguard public health. ⁶⁵

5.369 On 26 January, Dr Will described the case to SEAC and advised that the 'tests were inconclusive and the surveillance unit had classified the case as "possible CJD"'. ⁶⁶

5.370 Media interest continued on 26 January 1994, when several newspapers reported on the Victoria Rimmer case. Today newspaper followed up the article of the previous day with an article entitled 'Will the Time Bomb Explode?'. They reported that 'Vicky Rimmer loved burgers and is now believed to have a form of mad cow disease. The next five years should tell whether many more are in danger'. ⁶⁷

5.371 An article in The Times on the same day entitled '"Infected meat" threatens the life of girl, 16' reported that the case of Vicky Rimmer was causing concern among medical experts, some of whom feared it could provide the first link between CJD and BSE. ⁶⁸ The article quoted Professor Richard Lacey as saying:

We know the most likely food is processed food, the burgers and sausages. We have to assume it was these products, from cows, that caused the disease and we think this is the first certain case of BSE infecting a member of the human race by this method.

5.372 Also on 26 January 1994, an article in the Guardian entitled 'Woman's illness fans beef fears' reported again on Vicky Rimmer. The article went on to quote Dr Helen Grant, a consultant neuropathologist, as stating:

The ministry still permits use of calves brains in pies, pates, stock cubes and the like. In my view this is highly irresponsible. ⁶⁹

5.373 On the same day the Daily Mirror printed two articles. The first was entitled 'Tragic diary of girl doomed by Mad Cow beefburger', and gave a detailed account of Vicky Rimmer's symptoms. ⁷⁰ The second was entitled 'Act Now or Face Deadly Epidemic', which quoted Professor Lacey as stating:

I am convinced CJD can be caused by eating meat from cows infected by Mad Cow Disease. The only explanation for this 16-year-old girl's condition is that it came from contaminated beef . ⁷¹

5.374 In response to the media attention Dr Calman released a statement on 26 January 1994. This stated:

I am concerned about the recent spate of irresponsible scare stories in the press suggesting that people are at risk of contracting the fatal Creutzfeldt-Jacob disease from eating beef. These sensational and alarmist reports must inevitably frighten large numbers of ordinary people - and for no good reason.

The facts are clear. Creutzfeldt-Jacob disease is extremely rare - only one person in a million gets it - and those unfortunate people who do get it have contracted it for a variety of reasons. There is no evidence at all that eating infected meat is one of them.

Newspaper reports have been commenting on the sad case of one sixteen year old girl - yet no one knows what illness she is suffering from.

We do not ignore any suggestions about the causes of diseases of this seriousness, and the Government have invested considerable resources on the research issues in recent years looking at:

- the incidence of CJD;

- the causes of each individual case;

- any possible links with BSE.

On the basis of the work done so far, there is no evidence whatever that BSE causes CJD and, similarly, not the slightest evidence that eating beef or hamburgers causes CJD.

My position as the Government's Chief Medical Officer means that I must provide the best advice to the public, whatever the consequences. If there was any evidence that suggested a link, then I would regard it as my responsibility to bring it to public attention. ⁷²

5.375 In his statement to us Dr Calman said:

On the 13th January 1994 a national newspaper reported on a 16 year old girl who had developed a CJD like disease and linked this to hamburgers. As a result I released a statement on 26th January 1994 reiterating the view that on the basis of the work done so far there was no evidence whatsoever that BSE causes CJD and similarly not the slightest evidence that eating beef or hamburgers causes CJD. ⁷³

5.376 Sir Graham Hart, the Permanent Secretary for DH (1992-97) discussed his reaction to the case of Vicky Rimmer in oral evidence:

Well, I made a judgment that the world had not, you know, as it were changed catastrophically at that point. One obviously had at the back of one's mind at this time that there was a possibility here; still relatively remote, but real, but we had not reached the point at which, you know, one's balance of judgment tips over into it looks as though it is really bad news.

MR FREEMAN: Looking at that possibility that it might be something catastrophic, what action did you take, if any?

SIR GRAHAM HART: As I say, as we have just said, I discussed it with Sir Kenneth, and we agreed, the Department, you know, what needed to be done, which was to continue with very careful surveillance, consideration, to keep SEAC fully in the picture and so on and so forth. But we did not conclude that it was necessary to take any additional safeguarding action, given that we believed that safeguards were already in place. ⁷⁴

5.377 On 27 January, Dr Calman's statement was reported widely within the media. An article in the Guardian entitled 'Health chief rejects "scare stories" linking CJD and beef' quoted Dr Calman's statement. ⁷⁵

5.378 An article in the Independent on 27 January 1994, entitled 'Statistics that leave a bad taste in the mouth', discussed a television programme about BSE on a Channel 4 documentary series 'Dispatches', which had reported on the case of the 16-year-old girl. Professor Lacey was quoted as saying (in the television report): 'the only way she could have got this was by eating something'. The 'official spokesperson' (who was unnamed) was reported as saying the case 'isn't statistically significant'. The article noted:

Both parties are whistling in the dark for the moment but with one crucial difference - the penalty for believing the calmers, if they get it wrong, is rather more severe than that for believing the alarmers. ⁷⁶

Discussion: Dr Calman's statement on the case of Vicky Rimmer

5.379 It is possible that Dr Dealler's and Professor Lacey's conclusions that Vicky Rimmer had contracted CJD from eating contaminated beef was correct.

5.380 Her case had, however, been considered by Dr Will. His conclusion, which had been communicated to Dr Calman, was that it was uncertain whether she was suffering from CJD (see vol. 8: Variant CJD, Chapter 5).

5.381 In these circumstances we consider that it was reasonable for Dr Calman to make a public statement to counter the media reports which suggested that the link between Vicky Rimmer's disease and eating beefburgers was established. We feel that his statement:

On the basis of the work done so far, there is no evidence whatever that BSE causes CJD and, similarly, not the slightest evidence that eating beef or hamburgers causes BSE. ⁷⁷

was somewhat more emphatic than was desirable, but not to the extent that it would be right to criticise Dr Calman for his choice of language.

The joint MAFF/DH press release on calves

5.382 As discussed earlier in this chapter, the preliminary results of a pathogenesis test in June 1994 had revealed BSE infectivity in the small intestines of calves (see paragraph 5.210 above).

5.383 MAFF and DH, after seeking the advice of SEAC, decided to extend the SBO ban to cover the intestine and thymus of calves under six months old on 27 June, and the Bovine Offal (Prohibition) (Amendment) Regulations came into force on 2 November 1994 (see paragraph 5.210).

5.384 The decision and the proposal to make an announcement to the public on the pathogenesis results were discussed at a Cabinet meeting on 30 June 1994. The Cabinet minutes noted the following discussion points:

a) there was a risk that a Parliamentary announcement would provoke reactions among the public and the European partners which would be out of all proportion to the significance of the scientific findings. In these circumstances it might be better simply to leave it to the CMO and the CVO to give a purely technical briefing, as was done in the cases of other risks to human health.

b) on the other hand the Government's entire policy in relation to BSE had rested on the reputation it had built for openness about the infection. In current circumstances, given the level of public concern in both the United Kingdom and Germany, a parliamentary announcement was politically essential; and a written Parliamentary Question had already been arranged. Moreover, in the absence of a Government announcement, news of the research findings would inevitably come out after the meeting of the Scientific Veterinary Committee in Brussels and was likely to be presented in a much more unfavourable light. The balance of advantage clearly lay with the course of action proposed by the Minister of Agriculture, Fisheries and Food . . .

e) it was essential that in their press briefing the CMO and the CVO should make it unambiguously clear that there was no risk to human health from the consumption of beef and not use terms such as 'minuscule risk'.

5.385 The Prime Minister, Mr John Major, when summing up the Cabinet discussion, said that Mrs Shephard should proceed with the public announcement as planned. ⁷⁸ 'It was important that both the Government announcement and the joint briefing by the CMO and the CVO should emphasise that eating beef presented no risk to human health.' ⁷⁹

5.386 On 30 June 1994, MAFF and DH released a joint news release entitled 'Results of Further BSE Experiment Announced'. ⁸⁰ The news release was based on Mrs Shephard's written answer to a Parliamentary Question, and included a copy of a background document which gave more detailed information about the experimental results and the advice of SEAC, the CMO and CVO. The news release opened with the following remarks:

The Government has announced preliminary results of an experiment to trace the biological routes through which BSE develops in cattle. These confirm that, following the feeding of calves with a large dose of BSE-infected material, traces of the disease can be detected in animals' small intestines.

The results have been assessed by the independent expert advisory committee chaired by Dr David Tyrrell and by the Government's Chief Medical Officer Dr Kenneth Calman. Although they consider that the risk to human health is minuscule, the existing ban on the use of specified bovine offals is to be extended to include the intestines and thymus of calves under the age of six months, in line with the Government's policy of extreme caution in dealing with BSE. ⁸¹

5.387 The news release continued with Mrs Shephard's Written Answer, which opened with the comment: 'The Government's Chief Medical Officer continues to advise that there is no evidence that humans can contract Creutzfeldt-Jakob Disease (CJD) from an animal with BSE.' It continued with the results of the experiment and the advice from SEAC. Her concluding remarks included the following:

We have concluded while the assessment of SEAC and of the CMO is that any risk to health is minuscule, the Government's policy of extreme caution in relation to BSE requires us to ensure that the tissues in which infectivity might potentially occur are removed from the human and animal food chain. We accordingly propose to extend the scope of the existing ban on the use of specified bovine offal to the intestines and thymus of calves under the age of six months. An exception will be made for calves which die before two months of age which cannot be used for human consumption under other existing legislation. The necessary Orders will be duly made with the minimum of delay. This action is purely precautionary and will be kept under review. ⁸²

5.388 The background document issued with the news release gave a brief history of BSE, outlined the existing control measures, and gave information on the incidence of CJD and the results from the new research. It also included the advice given by SEAC at their meeting on 25 June and the statements from Dr Calman and from Mr Meldrum (who also held a joint press conference):

Advice from the SEAC

13. In view of this new evidence, SEAC was asked to meet as a matter of urgency on 25 June to consider any possible hazards the finding might pose for man. The conclusions of the committee on 25 June were as follows.

(a) On human health

The committee considered that the theoretical risk of infection of man via food derived from infected calves is minuscule if it occurs at all but information on calves is still very limited and as the experiment is still in progress and further information is expected it will be necessary to monitor these results carefully to see if this basic conclusion is correct and to see whether further action is needed.

(b) On animal health

The Committee considered that no further action was necessary on the basis of the scientific evidence.

It was also noted in relation to these conclusions that at this stage one cannot give a definitive answer. There is a theoretical risk and the Government could respond by a limited SBO ban for calves to exclude the intestines. The committee was also concerned that other tissues might carry infectivity and be used for human food but there was no evidence of this at the moment. The situation should be carefully monitored.

Action proposed by the Chief Medical Officer in agreement with the Chief Veterinary Officer

14. Following receipt of the advice from the SEAC we have thoroughly considered the matter. We have concluded that it would be consistent with the Government's policy of extreme caution on BSE, and would be appropriate in the light of the latest information, to extend the definition of specified bovine offal to include the intestines and thymus of calves under 6 months of age.

15. Although no finding of infectivity has been made in the bovine thymus this is an organ which is sold for human consumption as sweetbreads, and which is a permitted ingredient of meat products. Inclusion in the definition of specified bovine offals will ensure that any risk of transmission of BSE by this route is closed off. The remaining offals of calves which are defined as specified bovine offals in the case of cattle over 6 months - the brain, spinal cord, spleen and tonsils - are not considered, in the light of the available information, to present any risk. A specific exemption is considered appropriate in the case of calves under two months of age which die, accidentally or as a result of a disease, on the farm or in transit. The carcasses of animals which have died in this way are not permitted to go for human consumption. The pathogenesis study has detected no infectivity within two months of experimental challenge, so the risk of transmission from the intestine or thymus of such calves may be considered negligible.

Statement by the Chief Medical Officer on eating beef

16. I can reiterate what I have said previously.

17. On the basis of the work done so far, there is no evidence whatever that BSE causes CJD and, similarly, not the slightest evidence that eating beef or hamburgers causes CJD.

My position as the Government's Chief Medical Officer means that I must provide the best advice to the public, whatever the consequences. If there was any evidence that suggested a link between BSE and CJD then I would regard it as my responsibility to bring it to public attention. ⁸³

5.389 The day after the press announcement the Guardian newspaper, in an article entitled 'Minister admits calves are hit by mad cow disease', included a comment from Dr Helen Grant on the extended ban. Dr Grant had been 'urging a ban' on calf brains and other suspect organs since 1988:

Now it is proven that the infection can arise in a calf, there is no question that many infected young beef animals without symptoms are being slaughtered and eaten.

5.390 The article also reported Gavin Strang, Opposition agriculture spokesman, as saying:

We repeatedly called on ministers to extend the ban on offal to calves ever since the Agriculture Select Committee recommended this in July 1990. ⁸⁴

5.391 On 7 July 1994, the MAFF Consumer Panel ⁸⁵ met, and a panel member, Ms Suzi Leather, raised the extended SBO ban as an issue. The minutes of the meeting reported:

Ms Leather asked the Minister whether, in the light of recent developments in policy on BSE, the Government should not ban all offal from animals under six months old entering the food chain as recommended by the Commons Committee 4 years ago. She did not think that an incremental banning policy was either sensible or inspired much confidence. Mrs Kimbell agreed that this advice seemed sensible. Mr Soames disagreed and said that we must act on scientific advice. He also said that the figures for suspect cases were showing an overall decline . . . ⁸⁶