More than 3 million doctors have downloaded a 59p application – invented by Prof Peter Bentley, a researcher from University College London – which turns an Apple iPhone into a stethoscope.Last week, Bentley introduced a free version of the app, which is being downloaded by more than 500 users a day. Experts say the software, a major advance in medical technology, has saved lives and enabled doctors in remote areas to access specialist expertise.

“Everybody is very excited about the potential of the adoption of mobile phone technology into the medical workplace, and rightly so,” said Bentley, who initially developed the app “as a fun toy”.

“Smartphones are incredibly powerful devices packed full of sensors, cameras, high-quality microphones with amazing displays,” he said. “They are capable of saving lives, saving money and improving healthcare in a dramatic fashion – and we carry these massively powerful computers in our pockets.”

Bentley’s iStethoscope Pro application is not the only mobile phone programme lightening doctors’ bags and transforming their practices: there are nearly 6,000 applications related to health in the Apple App Store. The uptake has been rapid. In late 2009, two-thirds of doctors and 42% of the public were using smartphones – in effect inexpensive handheld computers – for personal and professional reasons. More than 80% of doctors said they expected to own a smartphone by 2012.

The trend looks likely to gain pace as younger doctors enter the workplace. Some medical schools issue students with smartphones. In America, Georgetown University, the University of Louisville and Ohio State University are among those requiring undergraduates to use one.

However, experts say they are being prevented from exploiting the technology’s opportunities. Bentley says that he is unable to launch a new range of applications because of out-of-date regulations.

“It’s much easier to develop technology than it is to get permission to use it,” he said. “I could create a mobile ultrasound scanner and an application to measure the oxygen content in blood, but the regulations stop me. We’re not allowed to turn the phone itself into a medical device, and what that precisely means is currently a grey area in terms of regulation. That’s the only reason we’re not seeing a flood of these devices yet.”

Professor Ian Wells, head of the scientific computing section in the department of medical physics at the Royal Surrey County hospital in Guildford, agrees that innovation is being hindered by regulations that are “still in their infancy”.

He said: “The approach of the regulators is not well worked out yet. There’s a wonderful new world out there but we need to find a way for regulators to protect patients and doctors, while not impeding innovation, research and development.”

The Medicines and Healthcare products Regulatory Agency (MHRA) – the government body with responsibility for standards of safety, quality and performance in healthcare – recently set up the Medical Device Technology Forum, a group of industry representatives, regulators, users and scientists, to help establish how to regulate novel technologies.

“This is such a complex area that we are currently looking at every application on a case-by-case basis,” said an MHRA spokesman. “We want to ensure that these new technologies are effectively regulated – thereby protecting health and avoiding unnecessary deterrents – while at the same time removing any unnecessary obstacles to manufacturers who wish to exploit new technologies for the benefit of patients.”

European regulators are also striving to bring their guidelines up to date. A group of regulators from Austria, Belgium, Denmark, France, Ireland, Sweden and the UK was set up last December to develop guidance for software under the European Medical Device Regulations. They are expected to report at the end of the year.

• Star Analytical Services has developed an app that allows patients to cough into their phone, and tells them whether they have a cold, flu, pneumonia or other respiratory diseases.

• OsiriX lets doctors look at x-rays, ultrasounds, CT and MRI images on handheld devices or mobile phones with special software, enabling radiologists, for example, to diagnose acute appendicitis from remote locations.

• ERoentgen Radiology Dx helps radiologists identify the most appropriate radiology exam for a patient by searching a large database of signs, symptoms and diagnoses to help them make quick assessments.

• Instant ECG is just one app that analyses the most common ECG results. It distinguishes the difference in various myocardial ischemia or injury patterns. Using the iPhone’s interactive touch screen, the app offers “real-time” films to make rhythm analysis similar to the clinical setting.

• AirStrip OB, an iPhone app, gives obstetricians real-time remote access to foetal heart tracings, contraction patterns, nursing notes, and vital signs. Obstetricians can monitor different stages of labour even when they are not by a patient’s side.

From: http://www.guardian.co.uk/technology/2010/aug/30/iphone-replace-stethoscope

The government has confirmed it is planning to scrap the NHS Direct telephone service in England and replace it with an alternative service.
Nick Chapman, chief executive of NHS Direct: “The new helpline will be better and more cost effective than NHS Direct” A new 1-1-1 helpline is already being piloted in north-east England.

It was previously reported that the new service may replace NHS Direct, but now the Department of Health has confirmed it will definitely do so.

The move comes as the government curtails public spending, even though it has promised to protect the NHS.

The change will not affect existing NHS helpline services in Scotland and Wales.

Health Secretary Andrew Lansley announced the plan to scrap NHS Direct in England during a hospital visit.

NHS Direct currently employs more than 3,000 staff, 40% of whom are trained nurses. It is understood the ratio on the 1-1-1 helpline is “slightly less” in the pilot, but no figures are yet available for what will happen when the scheme is rolled out nationally.

Critics claim the change would undermine the quality of the service by reducing the number of qualified nurses answering calls, but chief executive of NHS Direct Nick Chapman told the BBC the new helpline would be better and more cost effective than NHS Direct.

In June GPs urged the government to get rid of NHS Direct, claiming it was not cost effective.

Roughly 14,000 people a day call NHS Direct for medical advice, with the service costing £123m a year to run.

Dr Peter Carter, chief executive and general secretary of The Royal College of Nursing , said reducing the number of specialist nurses who worked on the new helpline was “short-sighted.”

He said: “We urge the government to consult fully and look at all the evidence before enacting changes which could leave people without expert advice from trained nurses.”

From: http://www.bbc.co.uk/nhs-direct-to-be-scrapped

NHS hospitals have quietly created banks of DNA from blood taken from millions of newborn babies without the proper consent of their parents.Freedom of information (FOI) requests to hospitals around Britain have established that the blood samples, taken in heel-prick tests to screen for serious conditions, have been privately stored by parts of the NHS since 1984.

According to guidance obtained by The Sunday Times, the DNA can be looked at by police, coroners and some medical researchers. They are able to identify named individuals.

This weekend Andrew Lansley, the health secretary, was under pressure to order an inquiry into why the NHS appeared to have acted without securing proper consent from parents.

Mothers of newborns are given a leaflet that academic experts say fails to make clear the distinction between consent for vital clinical tests to safeguard a baby’s health and for the use of the baby’s DNA in medical research and police inquiries.

Dr Helen Wallace, director of GeneWatch, a pressure group, said: “Giving mothers a leaflet does not amount to informed consent. No one who has just given birth is in a state to understand the full implications of how their baby’s genome might be used in future.”

The standard leaflet simply explains that the stored blood samples can be used “for research to help improve the health of babies and their families in the UK”.

Up to 4m samples are being held at four of the 16 centres licensed to hold newborns’ bloodspots in the UK, according to the FOI responses. More than 700,000 babies are screened each year.

The police and coroners can apply for access to the infant blood samples, which contain individual DNA, to identify people involved in crimes.

Private medical companies and researchers working for the NHS are also able to access the samples, although most of the research is anonymous and done by the NHS after approval by an ethics committee. The bloodspots have been used for genetic research and mass screening for diseases such as HIV in babies’ mothers.

The UK Newborn Screening Programme Centre, which oversees the use of samples, says that some of the bloodspots can be linked to other information, such as hospital admission records, which identifies the individual.

Government guidance says the bloodspots should be kept for at least five years, but hospitals vary widely in their practices.

Central Manchester University Hospitals Trust has 1m samples in storage dating from 1984. About 250,000 further samples are stored in the hospital’s laboratory. It plans to store them indefinitely.

Cambridge University Hospitals Trust retains samples for 18 years. It stores 400,000 samples at Endex archives in Ipswich, with a further 62,800 samples kept in hospital labs.

Great Ormond Street hospital in London began storing samples in 1990 and preserves them for at least 20 years. It screens and stores the samples of about 120,000 babies a year.

It confirmed that it had occasionally handed samples to coroners but not to the police.

Alder Hey children’s hospital in Liverpool, which was at the centre of a scandal over the retention of children’s organs, has 145,000 samples in storage. It receives about 29,000 samples per year. It destroys all samples after five years.

Dr Jane Kaye, director of the centre for health, law and emerging technologies at Oxford University, said: “It is very difficult to get samples like this to do public health screening. It is an enormous resource. But the problem is that this needs to be done properly and with proper consent. At the moment people are not being asked to sign a consent form or make a distinction between what is for their own child’s health and the fact that this may be used for other purposes.”

The samples are taken from babies, aged 5-8 days, to test for conditions such as sickle cell disorders, cystic fibrosis and phenylketonuria.

Shami Chakrabarti, director of Liberty, the pressure group, said that hospitals might face legal claims.

“As someone who gave consent for my own baby to be tested, I’m horrified that anyone would breach my trust, keep my child’s sample for years on end and use it for all sorts of extraneous purposes.

“If they think that thrusting a leaflet in an exhausted new mother’s hand creates informed consent, they can look forward to a flurry of claims under article 8 of the Human Rights Act.

“Liberty is writing to the new health secretary to ask for an urgent investigation.”

From: http://www.timesonline.co.uk/tol/news/uk/health/article7134061.ece

The NHS’s Connecting for Health CfH, NPfIT continues to push forward its plan to nationalise and centralise all medical records in England.

This despite a misleading announcement from the Department of Health that uploads to the Summary Care Record (SCR) aka Snoopers Charter are ‘on hold’.

In just the last few days, the medical press has reported that:

• NHS East Riding of Yorkshire began sending out notification letters to patients the day before election day;

• GP practices in Hastings, East Sussex have uploaded records over the past 2-3 weeks, despite patients complaining they hadn’t received a notification letter;

• At least 9 other Primary Care Trusts are working towards upload, and practice managers – not GPs – may already have given the go-ahead for upload at some practices in South West Essex.

Clearly, whatever deal was agreed between the British Medical Association and the NHS, there is no effective barrier to upload. And CfH is desperate to create a ‘critical mass’ of records, which it thinks will make the system impossible to scrap.

Health Direct warns that you need to act quickly.

30 million ‘Patient Information Packs’ were sent out in the run-up to the general election. No-one knows how many failed to reach their intended target. Both parties that now form the new government pledged to scrap the Care Records system but, every day that uploads continue, people’s medical confidentiality is being put at risk.

Please take a few minutes now or today to write to your new MP, urging him or her to call for an immediate halt to Summary Care Record uploads. POWER2010 has very kindly built an online letter-writing tool to help
you do this: http://www.power2010.org.uk/Halt

On the subject of the Nanny State’s Snoopers Charters- Home Information Packs (HIPs) were announced in the Queen’s Speech in November 2003, so were plans for a national ID scheme. The introduction of HIPs was subject to delays and plans were scaled back – just like the ID scheme.

In 2009 HIPS were finally issued and so were ID cards. The scrapping of HIPs was a manifesto pledge by the Conservatives and the Liberal Democrats, so was scrapping ID cards.

Yesterday Eric Pickles MP, the new Communities Secretary announced that “HIPs are history” and “laid an Order suspending HIPs with immediate effect” (pending primary legislation for a permanent abolition).

Meanwhile ID cards are still being issued and the UK Identity and Passport website states: “Until Parliament agrees otherwise, identity cards remain valid and as such can still be used as an identity document and for travel within Europe.” Alas we still await a Pickles style announcement from the Home Office.  See http://www.communities.gov.uk/news/corporate/1591777

The NHS has been accused of scaring patients into agreeing to have their personal information included on the controversial NPfIT electronic records database.

The agency charged with rolling out the new system is warning of “adverse consequences” if people choose to opt out of the computerised network, which has been criticised as chaotic by doctors.

It is also claiming that the NHS currently has “significant problems” with lost records.

A document posted on the website of NHS Connecting for Health lists several dangers to patients if they continue to have their medical information stored on paper files.

It states: “Health-care staff treating you may not be aware of your current medications in order to treat you safely and effectively.

“Health-care staff treating you may not be made aware of current conditions and/or diagnoses leading to a delay or missed opportunity for correct treatment.

“Health-care staff may not be aware of any allergies/adverse reactions to medications and may prescribe or administer a drug/treatment with adverse consequences.”

While acknowledging confidentiality risks over the digital database, the document continues: “It is … misleading to suggest that not having such a record is risk free.”

The computerised record system, also known as the care summary record, is intended to make it easier for doctors and nurses to get access patients’ medical histories.

But the programme has been beset by technical problems and criticisms. Last month the labour Government halted the national roll-out after it emerged that data could have been logged on the system without patients’ knowledge.

Information about more than 1.25 million patients have already gone on to the database, which eventually could hold up to 50 million records.

The Big Brother Watch lobby group accused Connecting for Health of overstating the risk to patients if they opt out of the system, after a Department of Health spokesman said the problem of lost paper records was not “significant” as the agency claimed.

Dylan Sharpe, the Big Brother Watch campaign director, told the Daily Mail: “If you value your privacy ignore these false and misleading warnings and opt out.”

From: http://www.telegraph.co.uk/NHS-scaring-patients-into-accepting-electronic-records-database

Health Direct urges you to opt out of labour’s snoopers charter NOW- WHILST YOU STILL CAN!

The NHS is sending millions of patient records and confidential medical notes to India for processing — despite a pledge by Labour that personal information would not be sent overseas.
It is the first time that databases of names, addresses and NHS numbers of patients have been sent abroad, along with private information about medical appointments.

NHS managers, under pressure to cut costs, are implementing the changes despite warnings about poor security in some offshore centres.

The Sunday Times has identified seven primary care trusts in northeast London, serving more than 1.5m people, that have begun to send patient details overseas. The databases are administered by about 200 workers in Pune, western India.

Although companies handling the records in India said security was “paramount”, there is a risk of patients being identified if the NHS numbers are matched with anonymised clinical notes carrying NHS numbers, already being sent to India by more than 30 trusts.

Typically, a set of clinical notes will be based on a consultant’s findings during a session with a patient, which he will read into a voice recorder during or after the appointment.

The recording is then transferred to a computer and sent to India, where it is transcribed. One source involved in processing the information said patient names can crop up during the appointment and may then inadvertently be included with the clinical data.

Workers in India are also producing letters for patients with appointments for cervical smear tests and breast screenings.

Pilot schemes for NHS offshore transcription services began more than four years ago and have rapidly expanded. The Royal Free hospital in London, the Derby hospitals trust and the Newham University hospital trust are among those sending clinical notes overseas.

Labour ministers have been anxious to allay concerns about the confidentiality of patient information since the launch of a £12 billion scheme to computerise health records.

In January 2007 Caroline Flint, then health minister, told parliament the project would “expressly preclude the transfer of patient information outside the United Kingdom”.

Trusts, however, believe they may send patient information outside the UK if it does not come under the electronic records project.

John Hemming, the Liberal Democrat MP for Birmingham Yardley and an expert on IT projects, said: “Given the government’s track record of losing data in this country, it is worrying that data are being sent overseas. Every transfer of information adds to the risk of it being lost.”

The possible risks of transferring patient data overseas were exposed last year when undercover reporters from ITV1’s Tonight programme were able to buy health records from a private hospital in London, processed in India. The sellers claimed to have access to thousands of UK medical records.

The transfer of primary care trust records is being handled by NHS Shared Business Services, a joint venture between the Department of Health and the IT company Steria.

From: http://www.timesonline.co.uk/tol/life_and_style/health/article7086816.ece

Health Direct urges you to opt out of labour’s snoopers charter- whilst you still can!

The NHS reported the highest number of serious data breaches of any UK organisation since the end of 2007, the Information Commissioner’s Office says.

David Smith, deputy commissioner at the ICO told the Infosec security conference the NHS had highlighted 287 breaches to it in the period.

That accounts for more than 30% of the total number reported.

The NHS – the UK’s largest employer with 1.7m staff – has only started the process of rolling out digital patient records.

Most of the breaches (113) were the result of stolen data or hardware, followed by 82 cases of lost data or hardware.

Mr Smith said the problems were not confined to the public sector and that results could be skewed because the public sector has a culture of reporting all breaches whereas not all private sector firms did.

Richard Vautrey, the deputy chair of the British Medical Association’s GPs committee thinks the number of breaches reflect the size and complexity of the NHS as well as its culture of openness.

“So many people have access to data and often human error is to blame. There is an increased attempt to be open and honest about what happens to data,” he said.

He added that he was not aware of a specific case where a data breach had affected patient privacy or care.

“We need to keep their breaches in perspective,” he said.

As part of its plans to digitise patient records, the NHS is asking patients if they want their data stored on national databases. It is important that people are given the chance to opt out, said Mr Vautrey.

Currently the reporting procedure for data breaches in the UK is voluntary although the ICO is “moving towards” a compulsory system.

In April the ICO introduced fines of up to £500,000 for serious data breaches.

The European Union’s Telecoms Package requires telecom firms to report data breaches and Mr Smith said he expected this requirement to expand beyond telcos.

Data encryption firm PGP welcomed the tough new approach to data security.

“Finally the ICO, which has long demanded greater powers, will be able to severely punish those in serious breach of the Data Protection Act. For too long, organisations have continued to ignore the warning signs – risking both the privacy of their customers and the reputations of their brands,” said Jamie Cowper, European marketing director at PGP.

He anticipates “severe fines” for the next private sector company to be involved in a serious data breach although he does not imagine the ICO will pursue the NHS.

PGP calculated that data breaches cost companies, on average, £67 per piece of data lost.

From:

http://news.bbc.co.uk/1/hi/technology/10089066.stm

Health Direct asks- given that the NHS has the worst record of data security and that labour politicans have already sent 250,000 political letters to cancer sufferers- are you CERTAIN that your medical records will be safe on the Snoopers Charter database? If not OPT OUT NOW- whilst you still can!

The National Health Service’s £12.7bn scheme to create an electronic patient record will “no longer provide the comprehensive solution” originally promised, says a top NHS executive.

Until now, health ministers and officials have acknowledged that the world’s biggest civilian information technology project is running four to five years late, and have said they want to make £600m savings on the £4bn-plus worth of contracts held by CSC and BT to deliver it.

Up to now, however, no one has conceded that the programme will fail to deliver everything that was promised back in 2003 when the contracts were signed.

Following a revamped deal with BT – the London supplier, which has cut £112m or about 12 per cent off its contract – Ruth Carnall, the chief executive of the London strategic health authority, has said the spending reduction means “it will no longer be possible to provide the comprehensive solution that was anticipated in 2003″.

Not all NHS organisations in London will now receive the software needed to deliver the records, Ms Carnall makes clear in a letter to London chief executives.

Meanwhile, Christine Connelly, the health department’s chief information officer, has said that only about half of London’s 32 big acute trusts will now get the full solution. Others will be able to add clinical systems to existing patient administration systems.

In place of a dedicated means of sharing records across hospitals, and between hospitals and primary care – a key goal of the programme – London will have to rely on the national summary care record, Ms Carnall says. However, this contains little other than allergies and current medication, and does not yet carry referral or discharge information.

On top of this, the Tories have said they will scrap the national record if they win the election.

BT will no longer have to deliver new systems to London’s ambulance service or GP practices. And London can afford to pay for Map of Medicine, a decision support tool for treating patients, for only one more year, says Ms Carnall.

In much of the country, installations in acute hospitals are stalled after CSC missed a deadline to get its solution running at Morecambe Bay NHS Trust. The supplier risks being fired, but is likely to sign a similar, more restricted, deal if it does hit a new deadline for a successful installation.

Glyn Hayes, president of the UK Council for Health Informatics Professions, said it had been clear for some time that the programme was to be reduced. “But this is the first official admission that there are things it will not do that it was intended to do.”

It was unclear, he said, whether the Conservatives would in fact scrap the national record if they won. “But if they do, it knocks a hole in London’s plans,” because without it the capital had no easy means of transferring patient information between settings.

From: http://www.ft.com/cms/s/0/fba8e660-436d-11df-833f-00144feab49a.html

Labour has become embroiled in a row about the use of personal data after sending cancer patients alarmist mailshots saying their lives could be at risk under a Conservative government.

Personalised cards addressed to sufferers by name warn that a Labour guarantee to see a cancer specialist within two weeks would be scrapped by the Tories. Labour claims the Conservatives would also do away with the right to be treated within 18 weeks.

The offending mailshot
Cancer patients who received the personalised cards, sent with a message from a breast cancer survivor praising her treatment under Labour, said they were “disgusted and shocked”, and feared that the party may have had access to confidential health data.

Labour sources deny that the party has used any confidential information. However, the sources admit that, in line with other political parties, it uses socio-demographic research that is commercially and publicly available.

The postal campaign started last month before the general election was called. This is the first election in which parties have been able to use internet databases and digital printing to personalise their mailshots.

Labour has sent out 250,000 “cancer” postcards, each addressed to an individual, asking: “Are the Tories a change you can afford?” Many of those receiving the cards have undergone cancer scans or treatment within the past five years.

- In the Labour constituency of Sherwood, Nottinghamshire, two of a group of eight women friends received the breast cancer card. They are the only two to have undergone cancer treatment. One of them, Phyllis Delik, 80, described it as “callous” and “despicable”. The second woman, Shirley Foreman, 58, who received the card a fortnight after undergoing surgery, said: “It is bad taste after what I have been through.”

- In the marginal east London constituency of Poplar and Limehouse, the card was sent to a 44-year-old television producer who had a potentially cancerous lump that turned out to be a cyst. She appeared to be the only person who received the mailshot among 50 neighbours. She said: “It’s crude and insensitive.”

- A card was sent to a woman who has died of breast cancer. Her 33-year-old husband was so upset that he sent a message to the Facebook page of Diane Dwelly, the woman whose case is featured in the mailshot, accusing her of being a pawn for the Labour party.

This weekend Dwelly, 48, from Rugby, admitted she had “probably been used by Labour”. She believed her photograph had been taken for use in a magazine for the National Health Service, not as part of Labour’s election campaign.

The cards are being distributed by Ravensworth, part of Tangent Communications, which has won accounts sending out mail for the Department of Health and Cancer Research UK.

Tangent claims that it specialises in “highly targeted marketing”.

The cancer cards are part of a wider postal campaign targeting various groups. Others are aimed at parents whose children attend Sure Start centres, pensioners and the owners of small businesses.

Labour has so far sent out 600,000 cards. It plans to distribute 4.5m during the election campaign.

Janet Arslan, 40, a graphic designer who also lives in the Sherwood constituency, said: “When I received the breast cancer card at first I thought it was from the hospital.

“I did not think Labour would be that crass to deliberately target a terminal cancer patient like me.”

Damian Bentley, managing director of Tangent, said: “Our company does a lot for the Labour party but I don’t work on that side of the business.”

He failed to respond to a list of questions on how the addresses of the cancer victims were obtained.

Emilie Oldknow, 29, the Labour candidate in Sherwood, worked for the NHS before she became the regional organiser of the East Midlands Labour party. She is the fiancée of Jonathan Ashworth, Gordon Brown’s deputy political secretary and a member of his “kitchen cabinet”.

Oldknow has denied all knowledge of the cards.

“I had not seen the mailshot before and it wasn’t sent out by my campaign,” she said.

In an email to Arslan’s mother, she said her details had been “obtained from the electoral register, which is available to political parties”.

Experian, the data management company, confirmed that both Labour and the Conservatives use its Mosaic database, which divides voters into 67 groups. The databases can use anonymised hospital statistics, including postcodes and the diagnoses of patients, to identify the likely addresses of those with particular illnesses.

It cannot identify potential breast cancer sufferers because the disease affects adult women of all ages and backgrounds.

Andrew Lansley, the shadow health secretary, said: “For Labour’s campaign to deliberately distress or scare sufferers from breast cancer is shameful. Because we are going to increase the NHS budget in real terms and cut bureaucracy and waste, we will have the capacity to ensure that cancer patients are seen sooner than they are at the moment and to meet the quality standards that they expect.”

From: http://www.timesonline.co.uk/tol/news/politics/article7094308.ece

Health Direct doubts labour spin about this approach being a “one off” as they have given themselves the right to snoop on all of your medical data- as well as their nightsoilmen at the Deptament of Health.

Highlighting once again the need for you to opt out of their expense white elephant that is the NPfIT propgram.

Private companies get access to millions of NHS medical records

September 29, 2008 By: Dr Search- Principal Consultant at the Search Clinic

The confidential medical records of millions of NHS patients could be handed over to private companies under controversial plans being drawn up by labour ministers.

Patients’ postcodes, medical conditions and treatments – and in some circumstances, their names – could be passed on to third parties without their consent.

http://www.healthdirect.co.uk/2008/09/private-companies-get-access-to-millions-of-nhs-medical-records.html

Bereaved families are being told that organs were removed from their loved ones without consent after a blunder affecting Britain’s donor register.

The records of 800,000 people were affected by an error that meant their wishes about the use of their organs after death were wrongly recorded.

An investigation has found that 45 of those for whom wrong records were stored have since died – and in approximately 20 cases organs were taken where consent had not been given.

Donors can give permission for any of their organs to be taken, or provide more specific agreements. A glitch in the IT system more than a decade ago removed the distinctions expressed by people.

Many donors have strong views about what can be taken. Often consent is not given for eyes to be removed, while some people who agree to donate organs are uncomfortable with the idea of their body tissue being used in research.

Joyce Robins, from the pressure group Patient Concern said: “This Government has got an absolutely dreadful record when it comes to data, but it is absolutely horrific that such sensitive details were handled in such a careless way.”

The NHS is about to contact approximately 20 families who allowed organs to be taken from their relations after being misinformed about what consent had previously been given.

It is illegal to remove organs without prior consent from the person who died or their next of kin.

A view is sought from relations before decisions are taken. In the cases where errors were made, it is understood that families were asked for permission, but their decisions were based on misinformation about the wishes of their relations.

After detecting the fault last year, NHS Blood and Transplant, which holds the organ donation register, was able to correct 400,000 of the flawed records. But 400,000 more people will shortly be contacted to be told that the wrong information may be held about them, and asked to provide consent again.

Until fresh consent is obtained, organs will not be taken from any of those people in the event of death.

The error occurred in 1999, when data held by the Driver and Vehicle Licensing Agency, which includes a request for consent in applications for a driving licence, was transferred to the organ registry.

The mistake came to light when NHS Blood and Transplant (NHSBT) wrote letters to new donors thanking them for joining the register, and outlining what they had agreed to donate. Respondents wrote back to say the information was wrong.

A spokesman for NHS Blood and Transplant, said: “We are taking it very seriously and are urgently investigating the situation.”

From: http://www.telegraph.co.uk/Organs-removed-without-consent-after-IT-blunder