by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate
I have taken steps to deny access to my medical records by 850,000 people and opted out of the NHS Spine database. If I were a celebrity my confidential medical records could be worth £10,000 to another journalist.
In the House of Commons Vincent Cable (MP Twickenham) said, “There is the looming issue of the NHS spine, containing highly sensitive medical data to which well over 300,000 people will have access. I am told that some journalists are willing to pay £10,000 or something of that order for access to the medical records of a celebrity. The temptation for somebody to use and abuse the database in that way is obvious.”
This statement, as reported by Hansard and TheyWorkForYou.com, was made of November 28 2007. In January 2007 it was stated it is estimated by 2010 there will be 850,000 users for the database by Caroline Flint, Minister for State (Public Health) Department of Health. A group supporting opting out claims it could be over 1,000,000 people who will have access.
Nothing is sacred anymore! Whatever happened to privacy? These days if you want to join an organisation, buy something on credit, sort out your finance, get a mortgage, they want to know everything there is to know about you. I have just looked up the meaning of privacy in dictionary and it claims the meaning is “a state of being free from public attention and free from being observed and disturbed by other people
If you try to buy travel insurance or car insurance and numerous other commitments you are advised they will share your information with other companies or record the information for “training purposes”. Oh yes – we have heard that one before! Travel companies also want to know about your health – will they have access to our medical records?
Now the National Health Service is going to do the same – sharing with other people. In fact in two years time your pain in the neck, or a diagnosis that you are a mad malingerer because you have fibromyalgia, could be read by 850,000 people – not all at once we hope! Even now something like 350,000 have already registered and access to the new NHS Spine.
Further more if you are well enough to hold down a part-time job, who is to say your prospective employer will not somehow have access to your records showing you have been off working for three months with some post viral whatsit? Have you noticed some companies are curious about your medical record? Will you be labelled as one of those who take a sickie for the World Cup, or the day after New Year’s Day?
Personally I feel enough is enough – I am fed up to the back teeth with government offices losing confidential information about learner drivers, people receiving child benefits, and our tax details, not forgetting the loses by nine NHS Trusts, without allowing the NHS Spine giving access to my details to all and sundry to discover if I have a pain in the butt. I sure do have a pain in the butt – it is the government.
I first heard about this proposal way back in September 2006 when I read the biggest IT project in the world was being undertaken, it was running two years behind schedule (there’s a surprise) but no-one would admit who owned it. Eventually it transpired the government were involved on behalf of the NHS – all part of their ‘Big Brother” and ID cards projects I guess.
By the beginning of 2007 Hansard reported questions were being raised in the House of Commons by Stephen O’Brien MP (Eddisbury). He asked how many people have smartcard access to the database now and in the future. He also wanted to know which non-NHS staff will be able to view the “NHS Care Records” database?
The Minister of State (Public Health) Department of Health, Caroline Flint, confirmed the responsibility would be shared between the Secretary of State for Health and organisations with access to the data.
She also confirmed that by January 2007 some 320,000 authorised users had registered for access. The database would be phased in to healthcare professionals within the A. & E. departments, primary care out of hours services, walk-in centres, and minor injury units. In time access will extend to those who care for patients outside the NHS – in the voluntary sector, from mixed teams of health and social care professionals and in the independent sector under contract to the NHS. Access will be limited to staff involved with the NHS and will only be available on a need-to-know basis. Patients will be informed of this enquiry and any objections raised will be respected said the Minister.
As privacy is swiftly becoming something we valued in the past, Stephen O’Brien MP asked the Minister how patients could opt out of having a summary of their detailed medical records uploaded to the database?
Hansard reported that Caroline Flint explained the national database of key information will include details about patients’ health care and will form the basis of the NHS care record service. Later in 2007 this was due to hold summary care records. But detailed patient records will be held electronically in a variety of NHS organisations, depending on where the patient receives treatment. These will be accessed locally and will not, like the summary records, be uploaded to the key database.
The Minister said it is open to the patient to choose not to have a summary care record through discussion with their GP. Our own doctors will be responsible for entering records onto the system. When the system is introduced GPs will know how to respond to patients’ request to be excluded from the national database. GPs will be recommended to act on patients’ preferences and keep a record.
I fear however our GPs will not have time to tell every patient this information is being uploaded. So unless you opt out your GP will opt you in. I understand there is no obligation to advise you of this action.
Caroline Flint said the database would deliver significant benefits for safety and efficient management of the NHS. It would improve healthcare outcomes and ‘prevent thousands of unnecessary deaths’. Patients whose records are not on the database would receive the same quality of care, albeit there may be an absence of the summary information about their medical background.
So the question remains – do we want to have our personal medical history available on a national “Big Brother “ database for 850,000 people to read (not all at the same time you understand) or shall we take pot luck and plod on as we have done in the past putting our faith in the old system?
It does appear we are damned if we do and damned if we don’t. Remember new passports in the future will require much more detail and input from us (fingerprints and interviews I am told), snoopers are taking secret pictures of our homes for council tax evaluation, spies live in our refuse and recycling bins, they want controllers under the bonnet of our cars and more – it is your decision.
Before you decide if you wish to take action to opt out of the NHS Spine database, or do nothing and remain in the opt in system, consider the following comments.
If you wish to opt out NOW is the time to act. You should send a confidential letter to your GP post haste exercising your right to opt out of the national database called the “spine”. The letter should request a copy of your “letter should be held by the GP “ 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”. For a suggestion regarding the wording of this letter log on to http://www.nhsconfidentiality.org where this can be downloaded.
This website is devoted to this issue and provides a template of the letter you should send immediately to your own doctor as well as lots of background and useful information and the option to receive email newsletters. I have opted out. If someone needs our records in an emergency they will do what they did before. If my details stay in the surgery I can be assured that my personal medical records will not be lost on some CD in a wheelie bin somewhere or that a rogue element will not use these details for criminal purposes. Look at: http://www.nhsconfidentiality.org
The website states, “The NHS Confidentiality campaign was set up to protect patient confidentiality and to provide a focus for patient-led opposition the government’s NHS Care Records System. This system is designed to be a huge national database of patient medical records and personal information (sometimes referred to as the NHS ’spine’) with no opt-out mechanism for patients at all. It was being rolled out during 2007, and is objectionable for many of the same reasons as the government’s proposed ID database.
The website continues, “Your medical confidentiality is at risk from this new database, as over a million NHS employees and central government bureaucrats will have access to not only your medical records but also your demographic details – name, address, NHS Number, GP details, phone number (even if it’s ex-directory) and mobile number.
There is no opt out whatsoever for your demographic details. You can only have them hidden in special circumstances if the police or social services request it – if, for example, you are a celebrity or on a witness protection scheme. Many public and private sector workers will otherwise have access to your address and phone number, from social workers to pharmacists.
You will eventually be allowed to ‘lock down’ some of your medical details (though the security mechanisms haven’t been built yet). But although you can keep some of your medical details confidential from some of the doctors involved in your care, they can override this if they think it’s necessary, and there is no way for you to keep your information confidential from civil servants. You will no longer be able to attend any Sexual Health or GUM (Genito-Urinary Medicine) Clinic anonymously as all these details will also be held on this national database, alongside your medical records. For the first time everyone’s most up-to-date and confidential details are to be held on one massive database.
The website also highlights the following recent news items.
December 23 2007 Nine NHS Trusts lose patient data. The situation can only get worse with the NHS Care Records as once medical everyone details are on a national database there will be even more scope for security disasters.
AND November 20 2007 In breaking news, Alasdair Darling will announce at 1530 that HM Revenue and Customs has lost the data of 15 million child benefit recipients, and the head of HMRC has resigned.
If you need further convincing about how your medical records will be bandied about read this: Hansard reported March 14 2007 that the Minister of State (Public Health), Department of Health) Caroline Flint said, “The spine is the colloquial name given to the national database of key information about patients’ health and care which forms the core of the care records service, and which, from later this year, will begin to hold summary care records.
“Detailed patient records are created, and can be held electronically, in a number of National Health Service organisations, depending on where patients have received treatment. It will be open to individuals to choose not to have a summary care record through discussion with their general practitioner. General practices will be responsible for entering care records on the system, and by the time the summary care record is introduced in local areas general practitioners will have been provided with guidance on what they need to do to respond to requests. GPs will be advised to record and act on patient preferences.”
Not many people realise that under the Data Protection Act, patients have the right to see their records, but this is a little publicised fact. So if your doctor is writing “It is all in this patient’s head”, at least you will know he has not got a clue what is really wrong with you.
But things are never that simple. The doctor can charge a patient for viewing his/her medical record – up to £50. So if you want to make use of the Data Protection law, you should ask what it would cost before you get carried away.
I was recently charged £10 for a letter that confirmed I had fibromyalgia and needed extra leg room on a fight. I did not get the seat with legroom as I was considered disabled by the airline and would hinder any emergency escape plan. What a waste of time that was! I could have said nothing, paid £12 and got the seat I wanted.
One GP Doctor Richard Fitton who allows his patients to look at their medical records, states that if a patient is dying of cancer, they may need to read all of the medical information. He also suggested that the information should be owned by the patients, as GPs are paid by taxpayers’ money to compile the medical records. He said if a patient asks for a complete copy and wants his/her information published on the World Wide Web he would be happy to do this for the patient.
Follow this link for news of 100 practices offering patients access to their medical records over the Internet. If you are interested print the article and take it to your own doctor.
Some of the background information written by this author was first published in FaMily magazine (ukfibromyalgia.com) in September 2006 and May 2007.