Concerns about patient records

Back on 21st November last year on this blog I raised concerns about patient records. I have now come across the NHS Confidentiality campaign which 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 basically 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 is already being rolled out and is objectionable for many of the same reasons as the government’s proposed ID database. Here is what Helen Co-Founder of The Big Opt Out, wrote:

YOUR PRIVACY
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.

Every time you attend any hospital appointment or are admitted all your identifiable clinical details are sent to BT, without your consent. Yes BT the people who send you your phone bill! These details include your full demographic details, diagnosis, treatment, GP details, Hospital, Consultant details, whether you will be seen again, how long you were in hospital etc etc. Even your most sensitive details such as gynaecological surgery, sexual problems, prostate problems, cancer treatment etc are sent to BT. These details are put on a database that BT runs called SUS. BT then sends these clinical details out to the DH, PCT’s, Strategic Health Authorities and even Dr Foster. When the NHS Care Records go live this will include everything you tell your GP too, even your marital problems will be sent to BT.

This is nothing new it has been going on for years but the DH does not want patients to know it. Prior to BT taking over the database it was run by a private company in Warwick. The DH fully acknowledge that there is no secure basis in law for the use of this highly sensitive data without patient consent yet they are continuing to refuse to allow patients to opt out of this database. In one set of DH minutes the DH state they do not want a patient to legally challenge them over this.

See Helen’s story http://www.nhsconfidentiality.org/?cat=2 this is how I was labeled as an alcoholic. My MP had to get a debate in Parliament to get this completely incorrect data removed.