Revolt as 200,000 people demand to opt out of new NHS database scheme

[Godfather77]

Revolt as 200,000 people demand to opt out of new NHS database scheme
By JAMES CHAPMAN
Last updated at 21:55pm on 31st December 2007

http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=505419&in_page_id=1774

Intimate details of the first 100,000 patients have been uploaded to the controversial new NHS database despite a mounting revolt by doctors and campaign groups.  Around 20 GP surgeries have added 110,000 individual records to the scheme, which will contain details on patients' medical history, current medication and allergies.

But the Daily Mail has learned more than 200,000 people have requested documents that allow them to demand their personal medical records are excluded from the system, which will "go live" in January.

There is growing concern about the security of the £12bn IT programme - the biggest civilian computer project in the world - which will ultimately contain the details of 50 million people. A poll showed that more than three-quarters of doctors are either "not confident" that data will be safe or "very worried" that it will leak once the system is up and running.

Some senior medics are now encouraging a campaign of disobedience against the database by supporting a campaign to urge patients to opt out. Activists in the British Medical Association (BMA) have produced a letter that people can send to their GP to stop their records going onto the database.

The letter can be downloaded from the website of the Big Opt Out campaign, nhsconfidentiality.org.
http://www.nhsconfidentiality.org/?page_id=9

Critics fear patient records could be misused if they can be accessed by NHS staff across the country. Campaigners also highlighted the Government's "appalling" record on data security, which saw the personal and banking details of 25 million child benefit claimants lost last year.

Nine NHS trusts were forced to admit losing hundreds of thousands of health records.

So far, more than 550,000 patients in Bolton, Bury, Dorset, south Birmingham and Bradford and Airedale have been asked to register with the new NHS IT scheme. It will be rolled out across the country later this year, once the pilot sites have been evaluated.

Patients were initially told they would have no choice over whether their information would be included on the database. But ministers were forced to offer concessions because of concerns over privacy and security.

Patients can now choose to opt out altogether - though they are warned this could compromise their NHS care. Alternatively, patients can choose only to allow access to NHS staff who have their explicit consent.

But NHS manager Helen Wilkinson, who is masterminding the opt out campaign, said patients were not being told of their rights. She launched her campaign in 2006 after discovering that she had been wrongly labelled an alcoholic after seeing a consultant about routine surgery. She has now forced the Health Department to wipe all of her records from NHS files.

"My concern is that patients' records are being uploaded without their consent," she said.
"The Government says every patient should be getting a leaflet setting out their options. But the reality we are finding is that many are not.
"Even when they do, we are not satisfied that the literature is clear about the risks associated with this database.
"The Government has demonstrated only too clearly that it cannot be trusted with this sort of personal information.
"Its record on keeping data secure is frankly appalling."

Joyce Robins, of the campaign group Patient Concern, said: "Our main problem is that they are doing it on an opt-out basis - we think they should ask for consent before records go up."

Dr Paul Cundy, chairman of the BMA's general practitioners IT committee, who helped compose the protest letter, said: "Some doctors are actively encouraging their patients to rebel. "This letter is an easy way for patients to express the rights that the BMA feels they ought to have by default."

Ministers insist that the current NHS records system, which relies predominantly on paper files, can lead to unnecessary delays and risks.

Marlene Winfield, head of public engagement for the NHS IT programme, said: "Patients are always surprised that their records aren't already available in other parts of the NHS - they say we thought the NHS has been doing this for years. "Patients have to go through a security process before they can set up the record.

"The NHS has always had a confidentiality culture as patient information is regarded by everyone as sensitive - it's in everyone's training and contracts."

But a poll carried out by the Doctors.net.uk website showed that only a fifth of doctors believe the system will be secure.

Another interesting site about what patients can do can be found at the below link.  It includes a template letter you can send to Whitehall and your GP requesting your records are not added to the new NHS database:

http://www.guardian.co.uk/society/2006/nov/01/health.medicineandhealth2

[Godfather77]

I have amalgamated a letter from the two sources listed above for those who wish to opt out of the NHS database.
                                                                                           

Your Name & Address

Name & Address of you GP

                                                                                             

Date

                                             

Exercising right to opt out

Dear Doctor,

I require you not to begin processing my sensitive personal data to the proposed NHS Summary Care Record on the ‘Spine’. It is likely to cause me substantial unwarranted distress because:

1. No 'sealed envelopes' yet exist to limit access
2. No online patient system yet exists to correct errors
3. Data uploaded may include genetic, psychological or sexual information
4. It is intended to make my data available to social workers, researchers and commercial firms
5. Although is BMA policy that patients should give their individual consent prior to their information being transferred on to the national database this is not being asked before beginning processing.
6. Adequate criminal penalties against abuse do not yet exist
7. Police and other agencies can gain access to a potentially unlimited range of information about me. There is abundant evidence that computer databases - including police, vehicle licensing and banking computers - are routinely penetrated by private investigators on behalf of clients, including media organisations
8. 250,000 smart cards have been issued granting access to the Spine
9. The department threatens to withhold appropriate medical care to objectors
10. Doctors say there is no necessity to design the Spine in this way

For these reasons, among others, I strongly fear that I am in danger of having false or damaging health information fall into the wrong hands. My privacy is being unnecessarily violated.  Nor do I do not believe that such a large database, with so many staff users, can be regarded as secure.   

I would be grateful if you would ensure that none of my records held by you are entered onto the national system.  Would you please also file or scan a copy of this letter in my records and also record my dissent by entering the “Read code” - ‘93C3. - Refused consent for upload to national shared electronic record.’ into my computer record. I am aware of the implications of this request and will notify you should I change my mind.

This request is itself confidential. Please do not divulge my decision, in an identifiable manner, to anyone other than to clinicians who are providing care to me and who might otherwise place information about me on the national care records service.

Further information for GPs is available online at: www.TheBigOptOut.org/for_GPs

Yours sincerely,

[Godfather77]

Smokers, drinkers and the obese beware: keep fit or risk losing NHS care
By JAMES CHAPMAN
Updated 10:29am on 1st January 2008
http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=505467&in_page_id=1774

Patients' rights are to be spelled out in a new NHS constitution, Gordon Brown signalled today. It is likely to cover core treatments to which they are entitled, minimum waiting times and the right to be treated in clean hospitals.

But with the rights will come the responsibility to lead a healthy lifestyle. There were fears last night that this could lead to smokers and people who drink or eat too much being refused treatments. Already around one in ten hospitals refuse to carry out joint replacements for obese patients or orthopaedic surgery on smokers.

The contract, first floated by Tony Blair was proposed by Gordon Brown in a New Year message to Health Service staff today. The Prime Minister believes a new focus on the prevention of ill health, rather than curing it, is essential for a modern NHS.

Downing Street sources said he was not taking a "draconian" approach that would undermine the principle of an NHS free at the point of access to every citizen. But the contract could include a "general requirement" for people to keep themselves healthy. Patients' groups fear doctors and NHS managers will see this as a go-ahead to withhold more treatment.

Katherine Murphy, of the Patients' Association, said last night: "No-one would disagree with the sentiment but we are concerned that imposing a duty on people to keep themselves healthy goes too far. "Hospitals are under enormous financial pressures and constraints. There has to be a fear that if people don't toe the line, they are going to be denied the treatment they are entitled to. In parts of the country, it's already happening."

Hospitals are currently entitled to draw up their own guidelines on access to particular treatments. Doctors say the risks of operating on obese patients are higher and the treatment may be less effective, with replacement joints wearing out more quickly, for example. Smokers also have a higher risk of complications after surgery.

Health trusts in North Staffordshire have the toughest restrictions. Patients must have a body mass index below 30 and have not smoked for three months to qualify for any routine operation.

Research last October for the ITV1 programme Tonight With Trevor McDonald found that thousands of patients needing hip replacements or non-emergency operations have been either barred from treatment or told to come back when they have "shown a commitment" to become healthier. In November, the British Fertility Society said severely obese childless women should be refused IVF treatment.

In today's message to NHS staff, to mark the organisation's 60th anniversary year, Mr Brown asks them to rally round the idea of a "more personal and responsive" Health Service. He calls for "an NHS which is able to offer the help and support that we all need to make healthy choices for ourselves and our families".

The Prime Minister - battling to restore his Government's reputation after a disastrous few months - will set out plans to expand the "prevention agenda" in a keynote speech later this month, It will include moves to tackle obesity and further reduce the number of smokers.

Opposition MPs are likely to accuse the Government of an unwarranted extension of the "nanny state". Public health minister Dawn Primarolo was criticised in November when she told the middle classes they were drinking too much. She said middle-aged couples drinking at home were a greater health concern than young people spilling out of bars.

Tory leader David Cameron will set out his party's plans for the NHS tomorrow. Last year his party proposed an NHS constitution telling patients precisely what treatment they were entitled to for all conditions. But they have also said one of their first acts on winning power would be to go further and introduce a new, independent NHS board to free the Health Service from political interference.

Shadow Health Secretary Andrew Lansley said last night: "Giving the NHS a new constitution is welcome but this Government has been promising this for over a year with far no progress. By contrast, the Conservatives have published legislation to give real freedoms to the NHS based on shared values.

"NHS staff will be disappointed that Gordon Brown's message does not provide relief from the bureaucracy, top-down control and targets that consume so much of the time and care they could be directing to improving patient care."