Opting Out of the New NHS Database 2007

[demon_x_slash]

There is growing concern about the security of the new NHS 'spine' database being trialled and then implemented next year. This site The Big Opt Out lists the main concerns with the system and has a template letter for you to send to your GP if you share these concerns.

 

The database will contain:

 

"Anything you disclose to any doctor, nurse, midwife, health visitor, health professional, NHS employee, pharmacist, at any hospital, surgery or clinic will be stored on this massive central government database. This could include sensitive issues such as sexuality, ethnicity, genetics, mental health issues, illicit drug use, abortion, contraception, impotence, paternity, infertility, HIV, sexually transmitted diseases, infidelitity, personal relationships, emotional problems, test results, domestic violence, rape and sexual abuse.

All of this highly personal information would also then be used for ’secondary purposes’, as detailed in Hidden uses of medical records."

"Your medical records

 

There are various components to NHS Care Records:

• Personal Demographic Service - this comprises your name, address, date of birth, NHS number and GP details. These details will be available to everyone in the NHS unless you are ’stop-noted’ (your details are hidden). Even high street pharmacists will be able to access these details. You may request your data to be stop-noted if you are a victim of domestic violence or in a witness protection program, for example.
  
• Summary Care Record - this includes all your major illnesses, allergies, prescriptions, etc. Unless you specifically elect not to have these clinical details uploaded to the national database, you will be presumed to have consented to them being on the database (this is called “implicit consent”). Once again, these clinical details will be available nationally. High street pharmacists are arguing that they should have access to this record and be able to amend it.
  
• NHS Care Records - these include all your detailed medical records, i.e. all your GP consultations, all your hospital consultations, and everything you tell your GP or consultant in confidence. These records will stored around the country in regional shared hosting centres. Patients are completely unable to opt out of having their detailed NHS Care Records stored at these centres. Primary Care Trusts and Strategic Health Authorites all share these hosting centres and records."

Everything coming under these headings is intended to be stored in the Spine under the new scheme, meaning that it can be accessed at any hospital in the country by any authorised staff member. There are no guidelines at present as to who should be 'authorised'; this means that it is possible that clerical as well as medical staff may be allowed access, managers, secretaries, administrators, IT staff...

 

Please have a read of the site, with Helen's Story being a scary example of the bull-headed attitude of the government to our personal, sensitive data.

[demon_x_slash]

Blogzilla: Please do not store my medical records in your leaky information systems

[demon_x_slash]

BBC NEWS | Health | Privacy fears over NHS database

 

 

Extract:

 

Dr Thornton, a GP in Kingsbury in north Warwickshire, told Radio 4's Today programme he had concerns about the new system, which was due to be introduced by the end of the year.

He said: "The danger with this system is that there's no GP or other professional with the clear responsibility to protect the information they have collected, and therefore civil liberties are very much in jeopardy".

The danger with this system is that there's no GP or other professional with the clear responsibility to protect the information they have collected

 

 

Dr Paul Thornton

 

 

Health Minister John Hutton said patients would have the right not to have their medical records stored electronically at all.

A second option of sealing the most sensitive data in an "electronic envelope" for use only in emergencies was also being offered.

But Mr Hutton said: "I believe very few people will opt out of the records.

"I hope and believe that patients will want to be part of this because it will help to save people's lives." Harry Cayton, chairman of the National Care Records Development Board, said the sharing of patient information would remain a matter between doctor and patient.

[demon_x_slash]

Spine — NHS Connecting for Health

 

The NHS' official implementation website, with all the entailing management-speak about how this is all for our own good. Worth it for a deprecating giggle...

[demon_x_slash]

Department of Health responds to patients over electronic care records — NHS Connecting for Health

 

The NHS is trying to make us believe that the only way they will take patients' details off this new system is if they have 'individual reasons for claiming serious harm or distress.' So you have to appeal - by writing a letter setting down all the info you don't want them to see for reasons of privacy, just so that they can decide whether you have a right to that privacy...

[demon_x_slash]

A new year, a new article... rows over who is actually the 'data controller' for medical records. The BMA say it's GPs; the DoH say it's - what a surprise - the DoH itself.

 

BMA may seek NHS records system boycott | OUT-LAW.COM

 

"Doctors will be advised to refuse to use the NHS's computer system unless the Department of Health (DoH) changes its mind on behaviour which the British Medical Association says is unlawful.

 

The DoH has refused to allow a large number of patients to opt out of its controversial computerised patient records system, which is still in development. The BMA says that that refusal is unlawful and could result in a boycott of the system by GPs.

"We believe this particular suggestion by the DoH is unlawful and certainly it's outwith our understanding of the Data Protection Act," said Dr Richard Vautry, the BMA's negotiator on IT issues and a member of its GP committee." (continued at link)

[Guest Battleaxe]

Can you imagine it? I am opting out of this one also. the records they hold now are not correct and I have had to sort it out several times.

 

I know how the NHS computer system works or fails to work, so this will be interesting when the wrong test results get posted to your file.

[demon_x_slash]

Hi Battleaxe, glad you're interested in this sort of thing - I get very worried when it appears (to me) as if the public are asleep when things like this come up in Parliament. Everyone I speak to gives me what used to be the classic Gallic response - a grimace, a nonchalant shrug, a 'zey will do vhat zey vhant, no?'. The apathy in this once proud country kills me sometimes.

 

We only have to look at the current Government's track record with computer systems (hah, usually in partnership with a private company): School criminal vetting, armed forces payroll, online prescriptions, tracking of foreign national criminals... do we really need more examples? I'm sure I can find a few more. Now, take the results of those calamities, the teachers unable to start jobs because they hadn't been cleared, the servicemen and women of this country getting their already meager wages delayed by months (and we all know what happens there - charges, defaults, DCAs, etc), on and on - then apply these evidences of sterling skill and planning to a medical database, one that has an entry for every single thing you've ever said or presented to your GP, your consultants, your nurses, even your GUM clinic. They haven't even worked out who will be able to see this 'centralised database', ffs!

 

Let's go one step further and apply aforesaid sterling skill and planning...to everything. Medical records (handy for all those insurance companies); educational records (only one A level? what a shame, Mr. Smith); employment records (ooh, off sick for two weeks five years ago!); financial records (couldn't pay the mobile bill last month, eh?); criminal records (scrumped as a lad? dangerous); travel, abroad or at home? that too (what are they doing and where are they going and why?); where you've lived previously (hmm, unassigned council tax debt - ah, so-n-so lived here near that time, must be them...); oh, and your biometrics, so eyescan, fingerprint, even DNA if it gets to that fearful stage (she sneezed near the scene ten minutes ago - must've been her!); all linked nicely to your family members and everyone you've ever had a joint bill/contract with, so we can add socioeconomic status to that (ugh, look what sort of family he comes from, awful yah?).

 

All that information about you...kept in one 'place'. Handy, for all those hackers who hate to shop around for their info - now they can just pop along to the One-Stop ID Shop and do all their skimming in one useful location. Handy, for all the companies that may apply to buy certain sections of that information (no word on if that will be allowed - yet).

 

No system of correction has been designed yet - all information gathered will be assumed to be correct when the Database is first activated. So, when You, Mr. Smith, at no. 14, father of two, staying above water financially, clean bill of health, gets confused with Mr. Smmith, down the road at no. 41 - on the council's Watch List because he's possibly putting his children At Risk, an alcoholic bankrupt, with creditors calling daily at his door...? "I'm sorry, Mr. Smmith, your records appear to be correct..." How often have we heard this from companies refusing to deal with incorrect defaults, or erroneous bills, or inflated and unlawful fees? And now we're letting someone do this with every little detail of our lives. Why? Because they're The Government? and they're Allowed? Why? Because they look official? Because they wear a sharp suit and speak in closed sentences?

 

If someone screwing up your financial info can mess up your life to the nth degree, as attested to time and time again on this forum, then think of the mess screwing up your medical record, or your employment record, or your criminal record, would create.

 

Sorry if this appears to be a rant, but I foresee a lot of problems with this bug-ridden, convoluted, improperly planned Labyrinth of No Return they're going to call the National Database, and I can't be the only one. I can't be.

 

*suddenly feeling very lonely* Anybody out there?

[Guest Battleaxe]

Oh boy, I have experienced the complacent attitude you are talking about.

 

If you are not responsible for your own life and are prepared to let the autmans take control well it will be to your detriment.

 

I fought for a pedestrian crossing many years ago. I ended up painting white lines on the road, that was the only thing which stirred the authorities after many years of letter writing by various organisations. it was my act which spurred the police and the local authorities into action. they were prepared to take me to court until I reminded them about the letters, the petitions, the represtations that had preceded my action. the the local councillor took the kudos for getting the crossing installed officially. The Army was ready to discharge me for conduct unbecoming..I won, after I pointed out, I was mother who wanted her child and the other children across that road safely first and an officer second and if the Army had listened to us instead iof treating us as 'hysterical mothers', this event would not have come to pass. I must admit it did not help my promotion prospects, but I had the support of many other who were not prepared to put their careers in jeopardy.

 

I will argue for what I think is right until I am proved wrong. I am responsible for my life and as such I will fight and rail against anything which I think is detrimental.

 

I am opinionated, sometimes wrong and will admit when I am wrong and I feel the proposed ID card and NHS Data base are wrong.

 

Even if two of us feel this way and are the only ones willing to express this in an open forum, so be it, at least we are on record.

[demon_x_slash]

I also hate the knee-jerk reaction you get from some when you express valid concerns about things like the lack of independent regulation, the inability to decide whether to include, for example, receptionists, in the list of 'needed-to-know'-ers, the over-ruling of active laws and Acts when it suits them... all I get is (usually condescending):

 

"Oh, you're paranoid. Here, have a little Big Brother flag and wave it in the corner, where we don't have to see you unless we want a laugh now and again..."

 

Well, Battleaxe, here's your 'paranoid' flag, and your 'paranoid' badge, and if it starts like this then I don't want to know how it's going to end...

[demon_x_slash]

I'm trying to keep the NHS database and the Centralised Database threads seperate...hey, DoH, take note, if I can manage it...

 

NHS IT 'secrets' exposed

http://www.nao.org.uk/publications/nao_reports/05-06/05061173.pdf

 

When they can't even black-out a document properly...

 

 

NHS IT 'secrets' exposed

A National Audit Office PDF cock-up

 

By Nick Farrell[/url]: Wednesday 23 August 2006, 14:56

THE NATIONAL Audit Office has accidentally revealed details of the NHS’s troubled multi-billion-pound IT programme "Connecting for Health".

The watchdog released a PDF report with passages electronically blacked out to hide sensitive information. The only problem was that by highlighting the hidden text, and then copying and pasting it into a text editor, all was revealed.

Amongst the details were the 'estimated costs' for each part of the NHS Connecting for Health programme. It also said that EDS's contract to provide an NHS-wide email system would have cost £212m if it had not been cancelled. It also said that BT was 'fined' £11.6 million for under-performance.

The blacked out bits also contained unreported criticisms from NAO officials about the Connecting for Health.

Public Sector Forums director Ian Dunmore said that that the NAO deserved a 'Debacle Rating' of A+ for its cock-up. He added: "If anyone needs lessons in how to edit PDF documents, we know of a very reasonable training outfit."

[workingasdesigned]

Hi demon x slash,

 

A very intersting thread you have started, i am currently employed on the care records programme, (for the past couple of years) i cant say who i'm employed by for obvious reasons.

 

The companies contracted throughout the UK to deliver the care records products, in my eyes and my collegues, leave a lot to be desired and are out for a quick inplimentation for max profit.

 

Thankfully the company i was involved with, didnt bank on our team having an opinion and asking a lot of questions, usually in the guise of why does it do that? why why, why??? why cant it do this? thats not the way we do our business, we need it to do this.....etc, etc

 

Eventually, the product we where given was deemed as not fit for purpose and kicked into touch (thankfully)

 

What i just want to say, is that there is a few of us people out there that want the best for the patients and NHS staff, and have put our reputations on the line to prove this.....thankfully coming out the otherside with our heads held high.

 

Happy New Year All

[demon_x_slash]

I do realise that, working., and I'm grateful, and very glad, that there are people like you working inside the system who are prepared to ask questions. If it weren't for people like you, we'd be in a worse situation than we're in at the moment. So many managers and administrators are too willing to go along with what private consultant companies say because of the terribly English fear of looking stupid in front of others, and, IMHO, are often deliberately 'blinded by science' by the representatives of these companies, in order, as you say, to make the quickest maximum profit. I've seen it happen in retail companies I've worked for, and find it difficult to believe that the human being under pressure in retail, making bad commercial decisions, is too much different from the human being under pressure in the health service, making bad organisational decisions. The only real difference between the two is the result of the decision made by the guy in healthcare affects peoples' lives...

[Guest Battleaxe]

Until August 2005, I was senior manager in the NHS, admitteldy Post Graduate medical Education, but as such, I attended the meetings and I saw so many stuff ups being covered up. i refused to be part of this and I am sure this was part of my demise. i would sit and the boardroom and ask, are we going to be sitting here in twelve months time and still not have learned the lessons of this year? i used to be howled down, told I was not team player and had the only department in the BLACK. I refused to use the NHS purchasing system. Too expensive, and I get better rates and delivery times from local suppliers, I bought the computers for my department outside the NHS system, which meant I had to go through hoops with the IT department, but our computers never had the problems the NHS purchsed computers had. i also used a commercial accounting system, so i kept two sets of books, the NHS accounting system was never balanced and when I got my monthly reports I was always able to point out the erros of the NHS accounts. I made sure my department's money was ring fenced. i also had the lowest rate of staff turnover, because I used different management practices. Now I am gone. I keep phoned here at home for advice and my department is so unhappy now the new manager is yes man to the NHS system and run the department the same way. Of course my degrees are in Education Administration, not as an HR Practitioner.

 

My study leave budget was always balanced and each doctor got the correct allocation. The classrooms were equipemnt the latest equipment and I refurbished the clinical skills lab by begging, borrowing and stealing and with a grant everyone said that couldn't be applied for because no one in the past had got it, when they applied.

 

I am supposed to trust the NHS with my data? They can't get it right on the locval level, what chance on a National level? No way, I have seen how things work from the inside. it is all targets and if mistakes are made, so what? no-one will ever find out, just so long as the books balance. never mind the ethics.

 

Pass me that paranoia flag and badge Demon.

[Allyxia]

Pass me that paranoia flag and badge Demon.

 

 

I concur - I feel exactly the same and am on my own band wagon regarding ID cards!!!

 

I am sick to death of the majority being enforced to complay with idiosyncrasoties of this government just because it suits the needs of teh minority!!!

 

Esp as this government undertakes most of these action covertly and it is often by error that articals such as these are stubled open.

 

To draw a paralelle the articale by DTi regarding more powers to the CRA (as if they didnt think they were above the law already).

 

Where are the protests? where are the campaigns?

 

Only last week I was told that because my goods were 24 hours out of the maufacturters warrenty they would not be fixed??????

 

Now I know and you know thats not true under that sale of goods act but why on earth should I start a letter writing or legal action just to get my legal rights sorted out - it make my blood boil!!!!!

[demon_x_slash]

It's because we're frightened of saying no if they're wearing a suit, or a uniform, even if it's metaphorical - we have a real inbuilt problem with authority - not problem in the rebellion sense, problem in the 'well, if s/he's saying that, then it must be all right, because s/he's a doctor/policeman/government official/add whichever is appropriate'. It's pathetic, but we all have it in varying degrees. Perhaps it stems from that thing we're told when we're kids: "Now, if you're ever lost, little Johnny, you must find the nearest policeman, and he'll make everything better..." It infers an unearned authority...ah, I'm not up to this. You know what I mean

[Guest Battleaxe]

If more of us are prepared to stand up and be counted and so NO WAY, it just halt the politicians in their tracks. I have the psyche over her is to roll over and let them get on with it. Discuss it between themnselves but when it comes time to stand up be counted, it just doesn't happen for feasr of rocking of the boat or being seen as anti-estiblishment,

 

They tried ID cards in OZ many years ago, the population united and it didn't happen

[Allyxia]

Oh Demon *sigh* I know how you feel!!!

 

I too share this view of "respect".

 

Whilst I agree we should treat people with courtesy, dishing out unearned respect, which agreed is taught from a young age, makes my blood boil.

 

Respect should be earned and gained mutually and stumbling blindedly benefits nobody.

 

At the risk off going thread - but picking up where you last left off.

 

I work as a Child Psych both for Volantery and Statutory Sector - I work with adolescents who have been abused, in my experience, I have seen the effects of abuse which are reaching from a high ranking civil servants, to policemen to teachers (now before anybody gets on their high horse - this is evidenced and fact and I am not infferring for one minute that everybody in these professions is - this mearly an example to what I have come across), all people which automatically are told to be treated with respect.

 

There is nothing wrong with teaching ouryoung to treat people as they wish to be treated and be to be polite, but we are often taught to wander in without question and when it comes to the area of work I am in, it is this automatic right of respect and unquestioning that is the bigist contributor to the epidemic of sexual abuse and organised child pedophillia.

 

What we need to be teaching our children is the correct way to challenge and question in a nonconfrontational and nonagressive way - these are the skills we need to be pervading!!!

 

But back to the orginal post - I do wonder!!

 

I myself am fighting to get a fridge freezer repaired which broke 1 day after it was 12 months purchased. Now we all know my Statutory Rights in this matter but why on earth should I have to spent 4 hours today drafting and quoting various leglistaion - these companies should already be acting lawfully and without extra work on behalf on of the comusmer.

 

In the same way our rights to privacy whether it be ID cards or Data Sharing under the NHS, should be automatic and the government should be petitioning to have change not draft some flipping White Paper, and sneak it through the back door!!!

 

Dispondant - yes maybe - but tomorrow just another day!!!

[MollieUK]

This is the first I have heard of this! I have filled in my letter but could someone advise me as to what you do for your children under 18, do I fill in the same letter as the guardian/parent, the letter does not allow for this so am unsure or do minors not have any rights with regard to this?

 

Any help is gratefully appreciated.

 

Mollie

[Guest Battleaxe]

I would imagine, if you have to sign for the child to have surgery, you can sign the letter on their behalf. At least the letter would be on record and if you found out later that their names have been included on the data base, you have proof that it was not authorised. Once the child attains majority she/he can make her/his own decision about this

[maybelline]

ok my family (but not me) received a patients survey thing which I think is really some kind of forerunner to putting the records on the new database as I had a quick look at the nhs web which makes me think this, strangely they dont seem to want my records but then I have complained strongly this last year to my GP, and my PVT who have false information (speculatively opinions and totally false info - which they were already sharing i.e my ex husband was in prison!!!???) no such thing, total confusion but a very serious error on their part, and misdiagnosis or life threatening conditions, I digress, I do not want to be on the new database. does anyone know if the patients survey is indeed related?

[demon_x_slash]

BUMP - perhaps a medical professional on here could let us know whether the 'patient survey' is anything to do with SPINE?

[whirlybird]

Sorry Im not a health professional but when i asked my GPs office about the database, i was told nothing was happening in my area until 2008.

When the time comes, we will be sent info through the post which would include opt out details.

I agree totally,its bang out of order we should have to write to patricia hewitt explaining in detail the precise nature of what we dont want revealing to all and sundry!

[demon_x_slash]

There is a very good report on the NHS IT fiasco from its inception in this fortnight's Private Eye - if there's interest and I can get my scanner working, I may post it up here.

[demon_x_slash]

My scanner's playing up, so I could only do them as images. Since I have no permission to post attachments, they're on my myspace page - direct links below:

 

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