Friday 23 September 2011

cjd deaths up year on year !

CJD Statistics


CJD Figures

These figures show the number of suspect cases referred to the NCJDRSU in Edinburgh, and the number of deaths of definite and probable cases in the UK, from 1 January 1990 up to 5th September 2011

REFERRALS OF SUSPECT CJD

DEATHS OF DEFINITE AND PROBABLE CJD

Year

Referrals

Year

Sporadic

Iatrogenic

Familial

GSS

vCJD

Total Deaths

1990

[53]

1990

28

5

0

0

-

33

1991

75

1991

32

1

3

0

-

36

1992

96

1992

45

2

5

1

-

53

1993

79

1993

36

4

5

2

-

47

1994

119

1994

54

1

5

3

-

63

1995

87

1995

35

4

2

3

3

47

1996

133

1996

40

4

2

4

10

60

1997

163

1997

60

6

4

2

10

82

1998

155

1998

64

3

3

2

18

90

1999

170

1999

62

6

2

0

15

85

2000

178

2000

50

1

2

1

28

82

2001

179

2001

58

4

4

2

20

88

2002

163

2002

72

0

4

1

17

94

2003

162

2003

79

5

4

2

18

108

2004

114

2004

50

2

4

2

9

67

2005124200567485589
2006112200669163584

2007

119200764291581

2008

150200888523199
2009153200978235391
2010149201084361397
2011*108201149261260

Total Referrals

2841

Total Deaths

1264

67

89

44

172

1636

*As at 5th September 2011

Summary of vCJD cases

Deaths

Deaths from definite vCJD (confirmed):

Deaths from probable vCJD (without neuropathological confirmation):

Number of deaths from definite or probable vCJD:

119

53

172

Alive

Number of definite/probable vCJD cases still alive:

3

Total number of definite or probable vCJD cases (dead and alive):

175

(Table updated 9th September 2011)

The National Creutzfeldt-Jakob Disease Research & Surveillance Unit (NCJDRSU)


The incidence of Creutzfeldt-Jakob disease (CJD) is monitored in the UK by the National CJD Research & Surveillance Unit (NCJDRSU) based at the Western General Hospital in Edinburgh, Scotland. The Unit brings together a team of clinical neurologists, neuropathologists and scientists specialising in the investigation of this disease. This document is intended to summarise the research in progress at the NCJDRSU and also provide some background information about CJD and other human spongiform encephalopathies. We have also provided some links to other resources and contrary points of view available on the Web.


Creutzfeldt-Jakob Disease Surveillance.

  • Figures for the number of CJD cases and referrals of suspected cases of CJD to the NCJDRSU since 1990.
  • NCJDRSU protocol for CJD surveillance across the UK.
  • National Referral System. From July 2004, a new national reporting system was announced by the Chief Medical Officer. This is centred on the National CJD Reporting Form to be faxed, by the notifying clinician, to the National Creutzfeldt-Jakob Disease Research & Surveillance Unit (NCJDRSU), the National Prion Clinic (NPC) and the local CCDC.
  • Interim guidance on incidents involving inherited prion disease - this document sets out how inherited prion disease incidents should be reported to the CJD Incidents Panel and complements the guidance on local reporting by clinicians of CJD cases to public health departments (above).
  • Text and figures of the latest annual report of the NCJDRSU covering the period 1990-2009 (published 11th March 2011).
  • Archive of previous NCJDRSU annual reports (1992-2008).
  • National CJD Research & Surveillance Unit Scientific Report 2007/08 (published 13th November 2008).
  • Reporting CJD cases to public health departments - Guidance Document. - (updated November 2006)
  • Potential treatments for Creutzfeldt-Jakob disease (updated July 2006).

Information on variant CJD.

  • Reproduction of the complete Lancet article published by the NCJDRSU in April 1996.
  • Text of a letter written by Dr Robert Will to every Neurologist in the UK. This letter describes in some detail the clinical and pathological variants observed between sporadic CJD and the new variant of the disease which has been identified here at the NCJDRSU.
  • The original statement issued by SEAC, the government's advisory committee on spongiform encephalopathies, about these ten cases of the new variant of CJD.
  • Protocol for the investigation of geographically associated cases of variant CJD
  • Incidence of variant Creutzfeldt-Jakob disease diagnoses and deaths in the UK compiled by N J Andrews at the Statistics Unit, Centre for Infections, Health Protection Agency.(updated 18th May 2011)
  • Figures for the number of vCJD cases worldwide [data courtesy of the European and Allied Countries Study Group of CJD (EUROCJD/NEUROCJD)]

Care and Support.


Practical information about CJD.


Creutzfeldt-Jakob Disease research.

    .....SECTION UNDER DEVELOPMENT .........

  • Complete reference list of scientific research articles produced by the NCJDRSU since 1990.

Other links


About ourselves

  • The people involved in the research being undertaken at the CJD unit.
  • The setup, details of the funding of the CJD and the collaborative projects we are involved in.
  • Our address should you wish further contact.

For enquiries contact:

Call for more training to improve blood tests in A&E

Call for more training to improve blood tests in A&E

Blood test Can doctors take a blood sample?

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Scientists say doctors need better training to avoid mistakes in blood samples taken in hospital A&E departments.

The warning from the Association for Clinical Biochemistry follows an audit at Birmingham City Hospital.

The trust has put in place extra training, but the ACB says this is a problem across the UK.

The College of Emergency Medicine says it is essential that staff use the right technique to collect blood.

Blood test results are often key to assessing patients when they arrive in A&E. But staff are frequently working under extreme pressure.

The ACB is worried that this contributes to errors when they take blood samples.

The concerns are highlighted by the Birmingham audit of samples collected by a range of junior doctors and nurses.

Urgent cases

In the study, published in the Annals of Clinical Biochemistry, the researchers followed the collection of 50 samples from some of the most urgent cases, over a two week period.

More than half were taken using the wrong equipment. They should normally by collected into vacuum tubes with special needles rather than using syringes which can damage fragile blood cells.

The researchers also found that about half the samples were mishandled for testing, raising the risk of contamination.

Start Quote

It sounds a bread and butter procedure but it is very important that it is done correctly, safely and consistently. We need to ensure there is the right level of expertise. ”

End Quote Dr John Heyworth President, College of Emergency Medicine

The trust has arranged extra training and guidance for its A&E staff. The director of pathology at the hospital, Dr Jonathan Berg, who helped to carry out the study, says good technique is vital to ensure the tests reflect the true status of the patient.

"Junior doctors have surprisingly little training in taking blood and have a love of still using syringes which cause major problems and this is very easy to correct with a simple training programme. This is an issue right across the country".

The director of scientific affairs at the ACB, Dr Robert Hill, says there is a need for better training.

"The compromises to specimen quality made in A&E when attempting to rush through investigations clearly put some patients at risk, so fixing the problem requires more than just identifying a culprit.

"Solutions must include monitoring the competence of those taking blood during their training period and discouraging those whose lack of practice prevents them from doing it properly."

'Bread-and-butter' procedure

The study is being presented at the annual conference of the College of Emergency Medicine, which represents A&E doctors in the UK and the Republic of Ireland.

The college's president, Dr John Heyworth, says the paper is "universally relevant" to all A&E departments.

"It sounds a bread-and-butter procedure but it is very important that it is done correctly, safely and consistently. We need to ensure there is the right level of expertise.

"I think it is always seen as so routine, there is not enough focus on it as a technique for formal review and training."

The chairman of the BMA's Junior Doctor Committee, Dr Tom Dolphin, also welcomed the study.

"Emergency Departments are high pressure environments where junior doctors have to take blood in an efficient, timely manner.

"Bloods can be taken in a variety of ways and this study highlights some consequences of the choices faced by junior doctors when taking blood.

"Incorporating the findings of this research into training for junior doctors and medical students would be helpful if we are to reduce some of the issues that can arise from blood sampling."

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Wednesday 21 September 2011

London hospitals: Hundreds die 'due to weekend staffing'

London hospitals: Hundreds die 'due to weekend staffing'

Surgery "Stark" differences in consultant hours at weekends were identified

Hundreds of people die every year in London due to a lack of hospital consultants available at weekends, according to NHS London.

A report from the strategic health authority showed there were more than 500 avoidable deaths in emergency care in the capital every year.

It found: "Reduced service provision at weekends is associated with this higher mortality rate."

Under the review, NHS trusts were asked to rate themselves on key indicators.

The report, Acute medicine and emergency general surgery - case for change, was compiled for NHS London in the spring.

It focused on the care adult patients receive on a general ward after being admitted for emergency treatment.

'Inadequate access'

The review found: "If the weekend mortality rate in London was the same as the weekday rate, there would be around 520 fewer deaths."

It identified "stark" differences in consultant hours across the capital's hospitals at evenings and weekends.

Across London, consultant emergency general surgeons were on site for an average of four hours a day at the weekend, compared with 10 in the week.

The report said: "In London there is significant variation in the number of hours that a consultant is expected to be on site.

"There is inadequate access in almost a third of London's hospitals to an emergency theatre - this is detrimental to patient outcomes and can increase mortality and morbidity," it warned.

But John Appleby from The King's Fund, a charity which shapes NHS policy, said the reasons behind figures were much more complex than consultant cover alone.

However, he said: "Patients are entitled to expect high quality care whatever day of the week, or time that they are admitted and that includes safe levels of appropriate staffing."

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Health Protection Agency fears student measles outbreak

Health Protection Agency fears student measles outbreak

MMR vaccine The HPA says measles can be fatal and is urging students to get vaccinated

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Students are being urged to make sure they have been vaccinated against measles, as health experts fear an outbreak of the disease.

Data from the Health Protection Agency (HPA) shows the number of confirmed cases so far this year is already more than double the total number for 2010.

By the end of July this year, there were 777 confirmed cases, compared with 374 cases for the whole of last year.

GP practices in university towns and cities have been alerted.

The HPA fears outbreaks are likely as students return to university campuses at the start of the new term, with the majority of cases so far being among children or young adults under the age of 25.

The organisation said these cases have been associated with small clusters in universities and schools, with many of the patients unvaccinated.

Dr Mary Ramsay, head of the immunisation department at the HPA, said: "Measles and meningitis are infections that can both be fatal, it is absolutely vital that all students ensure they are completely up to date with all their vaccinations, especially the MMR and Men C vaccine.

"University bars and campuses where lots of students are in close proximity is an ideal place for bacteria and viruses to spread which is why we may see more outbreaks of these infections in this environment.

"The MMR will protect against measles, mumps and rubella - all serious infections that can lead to many complications."

The HPA is an independent organisation, set up by the government in 2003, to protect the public from infectious diseases and environmental hazards.

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Sunday 18 September 2011

Culture, medical standards and language are all issues

GMC says more support needed for overseas doctors in UK

Culture, medical standards and language are all issues
The General Medical Council says some overseas doctors come to the NHS with "little or no preparation" for working in the UK.
It says those trained under different cultural and professional standards need more support.
StethoscopeThe GMC is planning a basic induction programme for all doctors to help them understand how healthcare is practised in the UK.
Doctors' representatives say the scheme will help to protect patients.
More than one in three doctors registered in the UK qualified abroad. The GMC says the NHS has relied heavily on their skills and dedication, and could not have kept going without them.
But it says they need better support in order to practise safely. The recommendation for an induction programme comes in its first State of Medical Education and Practice report.
This presents a profile of the medical profession and outlines challenges for the future.

Experiences of three foreign doctors

  • "In my country, the doctor is a kind of king who can do everything that he wants to, so there were no actual dilemmas because I was brought up in a way that whatever was decided was the right thing."
  • "The whole approach of explaining every aspect of treatment and giving the patient the option to actually make her own decisions, it was something totally new to me."
  • "I have come to know that that the important things in the UK which I didn't really take seriously is confidentiality which is different… in our culture, confidentiality is important but in the UK it is very, very important."
It says last year there were 239,270 doctors on the medical register. Just over 150,000 qualified in the UK, a further 23,000 trained initially in the European Economic Area (EEA), and 66,000 completed their medical undergraduate education overseas.
Cultural attitudes
Drawing on a wide range of data including doctors' surveys and patients' complaints, the report concludes that many overseas doctors have problems adjusting to a different cultural, ethical and professional environment in the UK. The GMC says these differences become particularly important in handling the doctor-patient relationship.
The report also says doctors should have specific advice about what will be expected of them, how the health service works and how they will be regulated. It recommends training in communication skills to help them handle sensitive situations and avoid misunderstandings:
"While there are some good local schemes for supporting doctors who are new to this country, there are too many examples of new doctors undertaking clinical practice with little or no preparation for working in the UK. There have also been accounts of locum doctors being sent to undertake duties for which they have not been appropriately trained."
The GMC restates its worry that it is prevented under European law from providing language checks on doctors from the EEA. This became a central concern in the case of Dr Daniel Ubani, an out-of-hours doctor from Germany who killed a patient, David Gray, with an overdose of a painkiller.
The report confirms that the GMC is working with the UK government to change this restriction.
The GMC's chief executive, Niall Dickson, said the regulator was preparing an induction scheme with doctors' employers and professional bodies:
"Developing an induction programme for all doctors new to our register will give them the support they need to practise safely and to conform to UK standards. This will provide greater assurance to patients that the doctor treating them is ready to start work on day one."
Protection for patients
Dr Tom Dolphin from the British Medical Association's Junior Doctor Committee welcomed the move.
"Being a doctor in the UK requires much more that just clinical expertise. It is also important to have highly developed communications skills, knowledge of UK medical ethics and culture, and an understanding of how the NHS works.
"The development of an induction course which helps doctors coming from overseas would do much to help them as they make the difficult transition to practise medicine in another country."
The President of the Royal College of Surgeons, Prof Norman Williams, also gave his support: "Guiding doctors who are new to the UK on how to practise within our professional, language, ethical and legal boundaries is a positive role for the General Medical Council to take on and one the Royal College of Surgeons would strongly endorse.
"We want to see any potential problems headed off before situations develop that might harm patients."


Friday 9 September 2011

“new vaccine offers hope of a tuberculosis breakthrough”

A “new vaccine offers hope of a tuberculosis breakthrough”, reported The Independent today. The newspaper said that the existing vaccine against TB (the BCG vaccine), “provides some protection against childhood forms of the infection, but is unreliable against the adult lung disease, which is steadily spreading”.

In this laboratory study, researchers genetically engineered non-TB bacteria so that when they were injected into mice they primed the mouse immune systems to recognise and fight off the tuberculosis (TB) bacteria that cause disease. The modified bacteria, which were less virulent than TB bacteria, had some of the genes that enabled them to cause disease removed, and replaced with the corresponding genes of the TB bacteria. These bacteria were then found to trigger an immune response that allowed the mice to fight off subsequent infection with the TB bacteria, without causing infection itself.

This is promising early research, but the researchers highlight that more research is needed to understand the underlying mechanism of how this immune response works. Much further testing in mice is needed before this vaccine could be considered for testing in humans.

Where did the story come from?

The study was carried out by researchers from the Howard Hughes Institute and the Albert Einstein College of Medicine, New York in the US. Funding was provided by the US National Institutes of Health, and the Bill and Melinda Gates Foundation Collaboration for AIDS Vaccine Discovery.

The study was published in the peer-reviewed journal Nature Medicine.

The research was covered comprehensively and accurately by BBC news and The Independent gave a good review of the research. Both highlight that it is not yet known whether this vaccine would work in humans.

What kind of research was this?

The aim of this research was to develop a vaccine in mice that could protect them against the tuberculosis TB bacterium Mycobacterium tuberculosis.

The only vaccine that is in current use to protect against TB is the BCG vaccine. BCG is not always effective, and in some countries that have the highest rates of the disease, the researchers say the vaccine actually has a “low or immeasurable efficacy”. In addition to this, any benefit to be had is further limited by the fact that the live vaccine, a weakened form of cow TB, can cause an infection in babies with HIV. As areas with a high rate of TB also often have high rates of HIV, this is another serious limitation of the BCG vaccine.

What did the research involve?

The researchers were interested in a group of genes called ESX-3, which are thought to be partly responsible for the high virulence (ability to cause disease) of tuberculosis bacteria (Mtb). Previous studies in which TB bacteria have been grown in petri dishes in the laboratory have shown that these genes are essential for growth. Bacteria that had these genes removed through genetic engineering could not grow.

How vaccines work

Vaccines work by stimulating our immune system to produce antibodies (substances produced by the body to fight disease) without us actually becoming infected with the disease.

Vaccines trigger the immune system to produce its own antibodies against disease, as though the body has been infected. This is called active immunity. If the vaccinated person then comes into contact with the disease itself, their immune system will recognise it and immediately produce the antibodies needed to fight it.

The researchers therefore developed a different bacterium that shares some similar features with Mtb called Msmeg. They developed it to grow without its versions of these genes. They called this genetically modified bacterium that did not contain the ESX-3 genes ‘IKE’ (immune killing evasion) as it was not able to evade the mouse immune response that could kill this bacteria. The researchers then put the ESX-3 genes from Mtb into the IKE bacteria, and called the new bacterium ‘IKEPLUS’. The idea was that the IKEPLUS bacteria would still be killed by the mouse’s immune system, but as they contained the ESX-3 genes they would also prime the mouse against the Mtb bacteria that cause the disease.

The researchers then compared the ability of the IKEPLUS bacteria to protect mice against Mtb with the ability of the BCG vaccine and a sham vaccine. Testing of the effectiveness of the vaccines took place at one month and eight weeks after infection with the disease.

What were the basic results?

The researchers first injected the mice with normal non-genetically modified Msmeg. This bacterium is generally not considered pathogenic (disease causing) but giving the mice a high dose through an intravenous injection proved fatal within seven days. They then injected other mice with IKE (the genetically modified version of Msmeg that had its ESX-3 genes removed). All of the mice injected with IKE managed to clear their bodies of the IKE bacterial infection.

The researchers then injected the mice with IKEPLUS. Although the ESX-3 genes from the Msmeg bacteria and the Mtb bacteria were similar (between 44 and 85% homologous), the IKEPLUS bacteria (which contained ESX-3 from Mtb) were rapidly cleared from the tissues of the mice. This showed that the addition of the ESX-3 genes from the Mtb bacteria to the IKE bacteria did not restore its virulence.

The researchers then wanted to see whether the IKEPLUS bacteria would protect mice against subsequent exposure to Mtb. They injected one group of mice with IKEPLUS, another with a sham vaccination and another with the BCG vaccination. Eight weeks later they exposed all of the mice to a high dose of Mtb. The average time to death was 54 days for the sham vaccinated mice, 65 days for the BCG-immunised mice and 135 days for the IKEPLUS-immunised mice.

In the previous experiments, the researchers had injected the vaccines directly into the blood stream of the mice. In this study, they wanted to see whether IKEPLUS could be used as a vaccine that was injected under the skin. They were also interested in trying to mimic a more natural acquisition of the TB bacterium (up until this point they had injected the mice with Mtb). They therefore gave the mice either injections with BCG or IKEPLUS under the skin and a month later exposed the mice to Mtb using an aerosol spray.

The mice immunised with IKEPLUS had an average (mean) survival of 301 days compared with 267 days with BCG, but this difference was not significantly different. The researchers did find, however, that after 25 weeks the bacteria level in the IKEPLUS-immunised mice remained the same as at the time of infection but it had increased in the BCG-immunised mice.

How did the researchers interpret the results?

The researchers say that their research demonstrates a major role for the ESX-3 genes of the Msmeg bacterium in modifying the mammalian host immune response. They claim to have “generated a new and highly effective candidate vaccine for tuberculosis”.

They say that the effect of IKEPLUS was most apparent when it was administered intravenously, but said that this is not a feasible way of carrying out standard vaccinations. They also say that after the intravenous inoculation only a small fraction (10- 20%) of IKEPLUS-immunised mice achieved long-term survival after being exposed to Mtb. Because of this, the researchers say that “further improvements will be needed to optimise the efficacy of IKEPLUS vaccination for the translational development (from animal to human) and implementation as a vaccine in humans”.

Conclusion

This encouraging research shows that a new genetically modified bacterial vaccine could prompt the mouse immune system to attack the usual TB bacteria that cause disease in humans. The researchers have pointed out that further research is needed before this vaccine could be tested in humans. In particular, they say that they need to understand fully how their vaccine stimulates the mouse immune system before knowing whether IKEPLUS could be a candidate vaccine.

This research is important as it might allow a new approach to the increasing problem of drug resistant strains of TB. It could also be used as a treatment for infants with HIV who, in areas with high HIV rates, cannot be offered the usual live BCG vaccine.

This is promising research, and what is required now is a great deal of testing and optimisation to determine whether this vaccine would be safe and effective in all groups of people, including those with HIV who are at particularly high risk of acquiring TB.

Links to the headlines

Tuberculosis relative could be new vaccine. BBC News, September 5 2011

New vaccine offers hope of tuberculosis breakthrough. The Independent, September 5 2011

Links to the science

Sweeney KA, Dao DN, Goldberg MF, et al. A recombinant Mycobacterium smegmatis induces potent bactericidal immunity against Mycobacterium tuberculosis. Nature Medicine 2011, Published online September 4 2011

'Opportunities missed' in Alina Sarag's TB death


Alina Sarag Alina Sarag lived life to the full, her family said

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Opportunities were missed to diagnose a 15-year-old girl who died of tuberculosis (TB), the BBC can reveal.

Alina Sarag, a pupil at Golden Hillock School in Sparkhill, Birmingham, died on 6 January.

A simple phlegm test which could have shown she had tuberculosis was never carried out at one West Midlands hospital, a clinical review of the case revealed.

A chest X-ray could also have indicated TB but the condition was not picked up.

The review, by Heart of Birmingham Teaching Primary Care Trust, concluded there must be a Birmingham-wide review of all standard procedures for TB after no-one considered the possibility in Alina's case, a high-risk patient.

Alina had been treated for TB and was seen at Birmingham Chest Clinic, in October 2009.

She was treated with antibiotics but the clinic failed to follow up her treatment.

After a visit to Pakistan in July 2010 she was sick upon her return.

Her mother, Farhat Mahmoode, said: "We took her to every hospital.

Treatment timetable

  • On 26 August 2010 Alina referred to Heartland Hospital but given all-clear
  • On 5 October referred to Birmingham Children's Hospital, but history of TB not picked up and hospital queried typhoid or an infection
  • A week later, transferred to Sandwell Hospital after going to City Hospital in Birmingham. She remains there for five days and TB is noted but sputum test not carried out
  • Chest X-ray carried out but deemed most likely to have picked up chest infection
  • Alina attended Birmingham Children's Hospital on 30 October where it is suggested that it was a psychological issue
  • On 14 December she saw a clinical psychologist but was in such extreme pain that the psychologist could not complete the assessment
  • Second appointment was arranged for 6 January, the day of her death

"If Heartlands Hospital didn't pick up something, maybe City Hospital.

"We took her to the Children's Hospital.

"We thought maybe another doctor would find out what was wrong, but we were failed at every turn."

After doctors at Heartland and City hospitals did not detect TB, Alina was admitted to Sandwell Hospital where she stayed for five days.

TB was picked up but no sputum test was carried out and a chest X-ray was thought to have found a chest infection.

She later saw a clinical psychologist at Birmingham Children's Hospital but was in such extreme pain that the psychologist could not complete the assessment.

A second appointment was arranged for 6 January, the day of her death.

The medical director of Sandwell and West Birmingham Hospitals, Donal O'Donahue, accepted there were mistakes with her care, but denied there was any need to change the systems.

'Clinicians devastated'

Mr O'Donahue said TB was very difficult to diagnose and when the reader of the chest X-ray decided it was unlikely to be TB, the phlegm test was cancelled.

He said not diagnosing TB from the X-ray was reasonable.

"All the clinicians involved in Alina's case were devastated that we had missed an opportunity to diagnose TB.

"Other than the need to bear TB in mind, there is nothing in our systems that we felt that we needed to improve on the basis of Alina's care."

The review decided the chest clinic should have followed up her treatment and it should have ordered X-rays to ensure her treatment had been successful.

Heart of England NHS Foundation Trust (HEFT), which runs the chest clinic, said it had put an action plan in place.

It said: "HEFT is the centre of excellence for infectious diseases in the West Midlands and saw and treated over 350 patients last year with TB.

"We have completed an internal investigation into the care provided to Alina Sarag by Birmingham Chest Clinic and an action plan has been developed with our clinicians."

The review team has recommended training to increase awareness about TB for all Birmingham GPs and other clinicians.

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