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. NHS Care Records are currently being rolled out and will form a huge national database of patient medical records and personal information (sometimes referred to as the NHS ’spine’) with no opt-in or opt-out mechanism for patients at all. It is very much akin to the government’s proposed ID database.

YOUR PRIVACY

Your medical confidentiality is at risk due to this new database, as potentially millions of 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 victim of domestic violence. Pharmacists will also be able to access this information.The only way to stop your demographic details being available nationally is to have them ’stop-noted’.

You are however allowed to ‘lock down’ your medical details. But even this can be overidden in certain circumstances—for example, if you go to Accident and Emergency. 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.

ADVICE TO PATIENTS

There are at least three things you should be able to opt out from.

First, you can opt out of having your GP data uploaded to the spine - or so ministers have promised in the past. To do this, write to your GP [link to ‘opt out’ letter].

 http://www.nhsconfidentiality.org/optoutletter

The Department of Health (DoH) have tried using the argument that by having your details uploaded to the spine, they will be available in an emergency. You may indeed wish to consider this if you have a long-standing medical condition. However A&E Departments do work to established clinical protocols for patients for whom they no medical history, and logging in to a centralised database to reference what they hope are your medical records does not happen at present - and seems unlikely to happen in the near future. If you do have a condition, e.g. diabetes, or penecillin allergy, it would be far better to wear a medical alert bracelet.

Aside from this there should be no impact on your medical care, unless DoH changes the rules to make it so. Your GP will still have access to your records, held locally on the practice’s systems, and can treat you as usual.

Second, you can opt out of having your address and contact details on the Population Demographics Service (PDS) - the NHS ‘address book’. This is prudent if you’re on a witness protection program, or fleeing an abusive relationship. If you don’t, then hundreds of thousands of NHS staff will have access to your real name, address and phone number. If you’re the sort of person who goes ex-directory and ticks the privacy box on the electoral register, then this is for you. [Link coming soon]

Third, you can opt out of the Secondary Uses Service (SUS) which stores records of all hospital treatments in the UK. This includes particularly sensitive stuff like abortions and A&E treatment for drug overdoses. To do this you must invoke section 10 of the Data Protection Act and state that the availability of your hospital records to large numbers of civil servants, etc. causes you distress. [Link coming soon]