This non-commercial website represents the personal views of Dr Neil Bhatia, GP and Caldicott Guardian for the Oaklands Practice.

This site provides information on the Summary Care Record (or NHS Database). The information on this site will be of use to everyone, not just patients registered at our practice.

I am happy for any GP practice to download and use the information/handouts/leaflets and documents on this site for their own surgery use, amended as appropriate.

Much of the information and guidance on this site was extracted from sources via the Freedom of Information Act.

The Oaklands Practice does not believe that patients should be automatically opted-in to have a Summary Care Record uploaded.

The Oaklands Practice believes that, as a patient, you should have the right to actively choose what should happen to your medical records and whether we should transfer information in these records to other organisations.

We are honest and upfront about how we will (or will not) process your data when it comes to the Summary Care Record.

No, if you are registered at the Oaklands Practice then you do not need to opt out to ensure your medical records are not uploaded until you say so.

Yes, you can opt in - or back in - to the NHS Database at any time.

GP practices can do one of only three things.

They can upload their patients' data to the NHS Database under the current Connecting for Health model, that is under assumed consent.
Unless patients successfully opt out, their records will be uploaded.

Practices who do not believe that their patients' data should be uploaded in this way can refuse to have anything to do with the Summary Care Record programme.

Finally practices can run an opt-in programme, whereby they will only upload the records of those patients who have given their explicit consent to have a Summary Care Record.
This is the approach that the Oaklands Practice has taken since 2006.

We ensure this by adding a read code (an electronic "red" flag) to all our patients' GP records. This read code (93C3) has just one purpose only - to prevent the automatic uploading of sensitive medical data to the NHS Database.

You can opt in, or back in, to the NHS Database at any time and have a Summary Care Record created. There is no deadline to opt in by.

If and when you opt in, you can choose to have a Basic Summary Care Record or an Enriched Summary Care Record (see later for the differences between the two). The choice is yours.

If you opt in then we will remove the flag from your records, or override it.

Opting in will allow your data to be uploaded whenever the Summary Care Record goes live in Hampshire.

The read code serves no other purpose - your GP can and will still share information about you with other health professionals when necessary.

We have produced a detailed factsheet about our opt-in approach to the Summary Care Record.

Our SCR Policy document, detailing the steps that we have taken as regards ensuring an opt-in scheme, can be downloaded here.

Any GP practice is free to download, amend and use any or all of the documents, policies, leaflets or web pages that we have produced in order to run an opt-in scheme for the Summary Care Record.

For the vast majority of children, teenagers and young adults - that is, the generally healthy population with little or no relevant medical history that would prove useful in an emergency - there is unlikely to be any material benefit from making their medical information widely available, whether by uploading their records to the NHS Database or otherwise.

For a few, perhaps those with complex medical problems or chronic diseases, there might be benefit in making their information more available. That is a discussion that can be held between the patient and their GP, and if the Summary Care Record is felt to be warranted and the most approriate option (of many) then explicit consent for an upload can be recorded.

There are many ways to make medical information more available to medical staff - the NHS Database is not the only way (see later in this site).

GPs see the very people that might possibly benefit on a regular basis. Patients with diseases such as asthma, COPD, heart disease, kidney disease, diabetes, epilepsy, dementia and those who have had a stroke are seen at least yearly. The majority are seen more often than that. Some, such as those with heart failure, high blood pressure, those women on hormone replacement therapy and those taking complex medication are seen at least every six months, often every 2 - 3 months.

The opportunities for GPs, Practice Nurses and other surgery-based health professionals to initiate discussions about making medical information more widely available, including via the NHS Database, are plentiful and will easily allow informed, explicit consent to be sought, obtained and recorded before any data is uploaded.

The Secretary of State for Health is the Data Controller for all data stored on the NHS Database, including the Summary Care Record, the Detailed Care Record and the Secondary Use Services.

As the Data Controller, he and he alone decides the purposes for which your uploaded data is, or will be, processed and the way in which your uploaded data is, or will be, processed. He alone decides who has access to your records, and whether or not to seek your consent for any such release.

Whilst your GP controls your medical records as held by your surgery, your GP is not the Data Controller for any records uploaded and stored on the NHS Database. He/she has no control whatsoever over that data.

• Your GP will not be able to control who has access to your uploaded records
• Your GP will not be able to control how your uploaded records will be shared or disseminated
• Your GP will not be able to control whether your consent is sought for any sharing or distribution of your uploaded records
• Your GP will not be able to control which other databases your uploaded records may be linked to
• Your GP will not be able to control what other information will be stored or linked with your uploaded records
• Your GP will not be able to tell you who has accessed your uploaded records, and when
• Your GP will not be able to monitor or investigate who has inappropriately or illegally accessed your uploaded records
• Your GP will not be able to get your uploaded data completely deleted from the NHS Database should you wish

The Personal Spine Information Service (PSIS) is the central database on the Spine (the overall NHS central service or network that PSIS and PDS run on) that stores clinical patient information. The PSIS holds the Summary Care Record.

At first, the data uploaded from your GP records to the PSIS will comprise of "core" data, and this phase is known as the initial summary. This will occur if you have either opted in to the SCR, or have not specifically opted out.

If you have opted out, no clinical information whatsoever is uploaded and a completely blank record is created instead.

Demographic data (your name, address, DOB, telephone number, GP details etc) has already been uploaded as part of the PDS (see later in this website).

"Core" data consists of:

• All repeat medications which have not been discontinued and are not more than 18 months past their review date. This also includes items which are recorded on the system but which are prescribed elsewhere (e.g. hospital or special clinic) or OTC (Over The Counter) drugs taken by the patient and recorded on the system
• All repeat medications which have been discontinued in the last 18 months
• All acute medication prescribed in the last 6 months. This includes medication prescribed elsewhere and OTC drugs
• Suspected adverse reactions and allergies including allergies to drugs, foods and any other substances

This core data has not changed, despite any suggestion that the government's 2010 "review" of the Summary Care Record has "scaled back" the information being uploaded. Nothing has changed.

Core data is the minimum data that will be uploaded to the Summary Care Record.
More data can and will be uploaded to it if you're not careful.

The Summary Care Record was never - ever - going to be just a "summary".

Immediately after this initial upload further data can and will be added, such as major diagnoses, past operations and procedures, hospital letters etc. This process of uploading further data to your record is known as "enrichment" or "enhancement".

There are two components to enrichment. Firstly, additional (or "supplementary") data from your GP record can be uploaded to the SCR. This will then result in an enriched GP Summary.

The additional data that can be uploaded to the SCR by your GP is vast.
The GP Summary can hold data under some or all of the following headings:

• Allergies and Adverse Reactions
• Repeat Medications
• Acute Medications
• Discontinued Repeat Medication
• Risks to Care professional or Third Party
• Diagnoses
• Problems and issues
• Clinical Observation and Findings
• Treatments
• Investigations
• Provision of Advice and Information to Patients and Carers
• Personal Preferences
• Social and Personal Circumstances
• Services and Care Professionals and Carers
• Lifestyle
• Family History

In addition, when you attend a hospital, specialist clinic or out-of-hours surgery or clinic, details of your attendance can be uploaded to your Summary Care Record. This is termed "SCR Release 2 information", and can be uploaded in addition to your GP Summary.

The data that can be included from sources other than your GP practice include:

• Accident and Emergency department discharge summaries
• Inpatient discharge summaries
• Outpatient clinic summaries
• Out of Hours encounters
• Health and Social Care Common Assessment Framework Plans
• Ambulance and paramedic attendance reports

Before October 2010, as far as the government was concerned, GPs did not need your permission to upload any details about you to the NHS Database.

There was no "Permission to Enrich".

The initial upload still remains the foothold required to enable more and more data to be uploaded.

Since October 2010, the government has stated that patients must give their explicit consent before any enrichment by their GP occurs.

Exactly how that will work in practice, and how such explicit consent can be enforced, remains uncertain.

If you are asked by your GP before further information about you is uploaded, then you can request that the information is not sent. You may wish for sensitive information, for example relating to mental or sexual health or certain infections, to be witheld from your enriched summary care record.

Be careful though. Neither you nor your GP can stop certain information from being uploaded automatically if you choose to have an Enriched SCR.

There were two emergency departments that were planning (as pilots) to upload Release 2 information to the Summary Care Record.

The Royal Bournemouth Hospital was one pilot site.
They have now abandoned plans to upload R2 data.

The Pennine Acute Hospitals NHS Trust was the other pilot site.
They too have now abandoned plans to upload R2 data.

But have no doubt. Once enough inital uploads have occurred, uploading of R2 data by hospitals and clinics will be back on the table.

Already, Connecting for Health is setting up new SCR Content Governance groups with the sole purpose of authorising further enrichment of uploaded records.

There exists a setting or flag that controls what data, if any, is stored within a given SCR. This is known as the National Summary Preference, or SCR Preference flag. The settings are shown below.

The flag can be set in a number of ways. It can be set by your GP (using the existing surgery software) if your surgery is enabled to do so, or it can be set by your GP adding a specific code to your GP-held electronic record.

Not all GPs can set the flag directly at present, this is limited to those GP practices who are currently in the process of preparing and uploading data to the Summary Care Record. All GPs can add the specific codes though.

The remaining settings determine whether GP enrichment can take place or not. Both these settings allow a basic SCR with core data.

The default setting is Implied Consent. Whilst this setting remains in force, only a basic inital summary is uploaded and your SCR cannot be enriched by your GP. If you say or do nothing as regards opting out of the SCR then your preference flag may remain on this setting.

This is also known as Implied consent for core SCR dataset upload.

It is possible that whilst your preference flag remains at this setting, your SCR cannot be enriched by R2 data from hospitals and clinics.
However, no one knows and the Department of Health will not say.

The other setting that prevents enrichment is Express consent for medication, allergies and adverse reactions only. Whilst this setting remains in force, only a basic inital summary is uploaded and your SCR cannot be enriched by your GP.

This is also known as Express consent for core SCR dataset upload.

The final setting is Express consent for medication, allergies, adverse reactions, AND additional information.

This is also known as Express consent for core and additional SCR dataset upload.

If this setting is set then:

• The initial summary is created ready for upload
• The SCR will be enriched by your GP
• Enrichment to a GP summary can occur before the initial upload occurs, so an enriched GP Summary may be uploaded right from the start
• Enrichment by R2 data from hospitals and clinics can occur

Express consent to have an enriched SCR can be set in a number of ways:

• The flag may be set by your GP using the existing GP software, if the surgery is so enabled
• The flag may be set by the presence of the specific electronic codes 93C2 or 9Ndn in your GP-held elctronic record

The 93C2/9Ndn codes are absolutely critical to the Summary Care Record.

Without them, your SCR will remain a core one, protected from being enriched by your GP (and probably by hospitals and clinics).

But once the code is in your GP records - whether you have asked for it or whether your GP has added it without your knowledge or consent - then the foothold is created for further enrichment of your record.

Whilst your explicit consent should be sought and recorded before any further information is added beyond core data, sensitive diagnoses, conditions and procedures will be uploaded nevertheless - and automatically.

And it gets worse.

If your GP is running TPP SystemOne, yet more data is automatically uploaded if the 93C2/9Ndn codes are present.

When a GP stops prescribing (or cancels) a repeat medication, they have to select a pre-defined reason why the medication is being stopped. For example, the patient may have had a surgical procedure, or a new diagnosis, that results in certain medication no longer being required or tolerated.

If the patient has explicit consent for an enriched SCR set (i.e. the 93C2/9Ndn codes are present) the stoppage reason will be uploaded to the SCR including the pre-defined reason and any free-text entered.

This is known as Reason for Medication Cancellation.

And - yes - it cannot be stopped.

You will not be asked for your consent to upload Reasons for Medication or Reasons for Medication Cancellation to your SCR. Such uploads will happen automatically and cannot be stopped.

Remember - the 93C2/9Ndn codes will permit enrichment of your SCR by hospitals and clinics. You may not be asked before such data is uploaded.

Think very, very hard before having an enriched SCR.

If you want a Summary Care Record then you need to decide whether you want your SCR limited to basic core data (allergies, medications and bad reactions) only, automatically updated from your GP surgery, or whether you want your SCR to be enriched with further data from your GP record.

The choice is yours - take control of your medical data.

Be aware of the implications of having the 93C2/9Ndn code in your GP records.

Make sure your GP knows what type of Summary Care Record you want. Do not leave it to chance.

If you already have a Summary Care Record, then the 93C2/9Ndn code might be in your records without your knowledge (or your consent).

Your GP might have added that code to allow additional information to be added to your SCR without your explicit consent.

In Bradford & Airedale, more than 9500 patients had their SCR set to enriched, almost all without either their consent or their knowledge.

In Leeds, more than 1300 patients had their SCR set to enriched, again almost all without either their consent or their knowledge.

Your GP might have added that code if you have now opted in to the SCR having previously opted out.

Or it might be there in error.

If you want to know whether the code is in your records then all you have to do is ask your GP.

If you have a SCR then ask what setting your preference flag is at.

And if you are not happy that the code is there then ask for it to be removed. That is your right.

It is easy to make your basic (core) SCR into an enriched one. Just ask your GP.

Your GP will simply change your preference flag, or add the 93C2/9Ndn code to your records.

It is easy to revert your enriched SCR back to a basic (core) one. Just ask your GP.

• Ask your GP to delete all instances of the 93C3/9Ndo codes (if your have previously opted out), and
• Ask your GP to delete all instances of the 93C2/9Ndn codes, and
• Ask your GP to set your preference flag to Express consent for medication, allergies and adverse reactions only

Be aware however that this procedure will not delete your previously uploaded, enriched data.

As mentioned above, you need to get the 93C2/9Ndn codes removed from your GP records in order to revert to a basic or core SCR.

If you have previously opted out (and therefore have the 93C3/9Ndo code in your records) and wish for a basic SCR, then the opt-out code must be removed as well.

Either code can be removed from your records.

GPs are perfectly entitled to remove either code from your records to achieve the desired aims.

Do not accept anything less. It is your GP record and your data.

The government is uploading everyone's medical records, no matter how young or old you are.

No, absolutely not.

You do not need to see, discuss with or seek the permission of your GP (or anyone else for that matter) before opting your children out of the NHS Database.

The decision to opt out your children from the NHS Database (or opt in to it) is yours to make, after discussion with your children as appropriate.

In exceptional circumstances, your GP might contact you, as a parent/guardian, to discuss whether opting out is in the child's best interests. But (in my opinion) this would be extremely rare.

If your child's medical history was so complex, serious or life-threatening then almost certainly other methods of making your child's medical information available to others will already have been considered.

If you are uncertain about opting your children in to, or out of the NHS Database then you are welcome to discuss it with your GP. But you are under no obligation to.

New babies will automatically get a Summary Care Record when they register at the GP practice.

You will need to opt out your newborn if you do not want them to have an NHS Database record.

Once your medical data has been uploaded to the NHS Database, it will be extremely difficult to get your data completely deleted.

If you decide you no longer want your medical records on the NHS Database, or if you discover that your records have been uploaded without your knowledge or your understanding or your consent, you will find it virtually impossible to get your data deleted. Your "visible" record can be blanked out or masked, but your medical records - and your childrens' records - will still be stored intact and indefinitely on the NHS Database.

If your records are "accidentally" uploaded, your GP will not be able to get them deleted for you. Your GP will not be able to put things right.

When your children are old enough to understand about the NHS Database, they will not be able to get their uploaded data deleted if they want.

At first, the government said:

• that "the data could not get deleted"
• they "have to retain the record since it may be required to demonstrate the reasons behind a clinical decision"
• that "the record is retained for medico/legal purposes"
• that "what has to be maintained is what was seen, not what was intended to be sent from other systems"

The government can in an instant, effortlessly and for free lose 25 million child benefit records but appeared to have neither the funds not the technological capability to delete an individual medical record uploaded to the NHS Database.

Following a complaint to the ICO, the government appears to have performed a u-turn on deleting certain uploaded data.

The government briefing on this matter spells out their "spin" on the u-turn.

But the devil is in the detail.

But the Department of Health has produced no guidance to indicate when a SCR "should have been accessed".

The Summary Care Record Deletions process is detailed in this document.

You will have to opt out of the NHS Database (if you haven't already) by stating this to your GP.

You GP will send your SCR Deletion form to the local PCT who will initiate the deletion assessment with Connecting for Health.

The extent that your SCR had been "used to support care" will need to be determined by analysis of audit information by the local Primary Care Trust together with officials from Connecting For Health.
Remember, there is no guidance available for this.

If it is established that your record had not been "used to support care", then the SCR Programme staff will raise a service request for the Department of Health to physically delete your SCR record.

If a GP practice decides it no longer wishes to be part of the NHS Database/Summary Care Record after it has uploaded its patient's data then the uploaded records become "frozen" but remain accessible and viewable.
The records will no longer be updated or enriched but the data will not be deleted automatically and will remain indefinitely on the NHS Database.

You will not be able to change your mind about a SCR once it has been created.

You will never be able to get your uploaded data deleted.

Just opt out (see below). The same code that is added to prevent the uploading of medical records to the NHS Database in the first place is used to "blank" or "mask" a "visible" NHS Database record (so called "logically deleted").

Your GP will either add the appropriate read code to your GP-held records or your GP can set your decision to no longer have a Summary Care Record directly via the surgery GP software (the so-called "NHS Summary Care Record consent flag").

This will limit those who could clincally access your data, but all your uploaded data will remain intact and archived on the NHS Database forever (i.e. not "physically deleted").

If you agree to have your records uploaded to the NHS Database then you will not be informed each and every time anyone accesses your medical record, or informed at regular intervals as to how many times your record has been accessed and by whom. The NHS will not volunteer this information to you. You will have to ask.

The Data Protection Act gives you the right to find out this information. But it will be time consuming, and you will have to do this regularly if you wish to monitor and protect your uploaded data.

The from that you need to use to make your request is available here.

You will provide your name, date of birth, current address and possibly your previous address.

You will need to provide for identity purposes a copy of any one of the following documents:

• Photocopy of passport
• Original copy of electricity bill
• Original copy of gas bill
• Original copy council tax bill
• Original copy of any other bill in your full name

You will need to send your request to:

The Data Protection Manager
Department of Health
Room 334B Skipton House
80 London Road
London SE1 6LH

It may take up to 40 days for your requested information to be received from the DoH.

Whilst you may find out if and when your SCR has been accessed (and by examining the dates and times discover if your data has been inappropriately accessed) you will not be told if and when your uploaded data has been shared with other government departments or made available via SUS or to researchers.

In September 2008, the government announced that people accessing data uploaded to the NHS Database were "required" to seek that patient's permission before doing so, so called "permission to view".

In reality, all this means is that a simple additional mouse click on the 'Yes' button will be needed. People will be able to inappropriately access uploaded patient data simply by claiming to have their consent. There are no measures that can stop people falsely claiming to have consent and clicking on the 'yes' button.

In fact, your permission isn't even required, as long as whoever is accessing your data states that they feel that is is "in the public interest" not to ask you.

When your Summary Care Record is looked at in an Accident and Emergency department (or other hospital department running the Ascribe Symphony software) a copy of your SCR (as it is at that moment in time, a snapshot) is downloaded and stored indefinitely on the organisation's local computer system.

You cannot prevent this download nor can you get this downloaded copy deleted should you wish.

Be aware : PERMISSION TO VIEW = PERMISSION TO DOWNLOAD AND STORE.

If your Summary Care Record is accessed, for example at a GP out of hours centre, be very careful that the permission to view status for your record is not accidentally - or deliberately - changed without your knowledge.

By default, assuming you have a SCR, your consent status is set for "permission to view":

But even before you are supposed to be asked for your permission before your SCR is viewed, the software will invite a mouse click to change your consent status so that in future you will not be asked before your SCR is viewed:

When this setting is chosen, your consent status changes from permission to view to need not be asked again for permission to view:

And your consent status displays "Access Granted":

"Permission to view" changes nothing when it comes to your medical data:

• "Permission to view" will not stop your medical data being uploaded to the NHS Database in the first place
• "Permission to view" will not stop your children's medical data being uploaded to the NHS Database in the first place
• "Permission to view" will not stop your Summary Care Record from being "enriched" without your knowledge and your explicit consent
• "Permission to view" will not stop your medical data being inappropriately accessed
• "Permission to view" will not stop your medical data being sold, misused or passed to third parties
• "Permission to view" will not stop your medical data being disseminated via Secondary Use Services without your knowledge and your explicit consent
• "Permission to view" will not stop your medical data being made available to researchers or pharmaceutical companies without your knowledge and your explicit consent
• "Permission to view" will not stop your medical data being made available to insurance companies without your knowledge and your explicit consent
• "Permission to view" will not stop your medical data being made available to commercial organisations without your knowledge and your explicit consent
• "Permission to view" will not stop your medical data being made available to other government departments without your explicit consent
• "Permission to view" will not stop your medical data being made available to the police or security services without your explicit consent
• "Permission to view" will not stop your medical data being linked to other government databases
• "Permission to view" will not stop your medical data being accessible to hundreds of thousands of people working in social services, voluntary and private sector organisations, pharmacy, dental and optical services
• "Permission to view" will not stop your genetic data being stored on the NHS Database with your medical data
• "Permission to view" will not stop the SoS for Health being the Data Controller for your uploaded records
• "Permission to view" will not enable you to get your uploaded records completely deleted from the NHS Database
• "Permission to view" will not stop your medical data being lost or misplaced

The government states that "Permission to view" has “put to bed the practical issues around consent”.

But nothing could be further from the truth.

The biggest myth of all when it comes to the Summary Care Record is that "the information is only accessible by staff directly involved in a patient's treatment".

In order to view a Summary Care Record, the user has to just declare that they have a reason to access the record - that is, that they have a "Legitimate Relationship" with the patient.

The SCR is supposedly policed by means of "privacy alerts", sent to an organisation's privacy officer when, for example, a self-claiming legitimate relationship is generated. The privacy officer is then supposed to investigate all such alerts to see whether any unwarranted access to the SCR has occurred.

When a SCR is accessed, the user is asked to declare that they have a "self-claiming" Legitimate Relationship. They then have access to the patient's record.

In reality, this just means clicking the mouse, for example on "Best interests of patient". Nothing can stop a user from doing that.

And they then have unrestricted access to that record for a further 5 days. They do not need to declare a "self-claiming" Legitimate Relationship again.

And that means no privacy alerts.

When a legitimate relationship is set up (by a receptionist) for an entire department - for example, when you attend Accident & Emergency - then everyone in that department (who has an appropriate smartcard) can access your record without needing to self-claim.

And they then have unrestricted access to your record for THE NEXT 6 MONTHS.

No one needs to declare a "self-claiming" Legitimate Relationship.

And that means no privacy alerts.

Your GP does not add the B0085 activity to smartcards - PCTs, hospital trusts and organisations do. Your GP cannot stop that activity code been added to any smartcard.

Your GP has no control whatsoever over who can access your Summary Care Record.

A list of Summary Care Record viewing sites as of December 2010 (only some of which are actively looking at SCRs) can be found here.

The PDS is the national electronic database of NHS patient demographic details. It is an essential element of the NHS Database and contains demographic information (such as name, DOB, address, NHS Number) on every single person in England.

The complete information that each PDS record holds can be found here.

Many would argue that the information held on the PDS is "sensitive". However, the PDS does not store certain sensitive personal information such as ethnicity and religion.

The PDS is accessible to a huge number of people, all capable of looking up the details of anyone in England. All that is required to access a PDS record is a surname, forename and date of birth.

There are currently some 831,000 registered smartcard holders.

The PDS is available to the following:

• Strategic Health Authorities
• Special Health Authorities
• Primary Care Trusts
• NHS Trusts
• Mental Health Trusts
• Foundation Trusts
• General Practitioners
• Registered Dentists
• Dispensing opticians and ophthalmic opticians
• Pharmacists
• Independent Sector organisations providing health and social care on behalf of the NHS
• Any Government body providing health or social care
• any other Government body or organisation which performs any of the functions listed above

You will not be informed each and every time anyone accesses your PDS record, or informed at regular intervals as to how many times your record has been accessed and by whom. The NHS will not volunteer this information to you. You will have to ask.

The process for finding out if, when and by whom your PDS record has been accessed is exactly the same as for the SCR, as detailed earlier. Just specify to the DoH that you are requesting information about your PDS record.

Flagging a record as sensitive means that the following information is not sent between the NHS Database and local NHS IT systems (such as GP surgeries and hospitals):

• Addresses - This includes the home, temporary and correspondence addresses
• Telephone, fax and email details
• Registered GP Practice
• Alternative contacts, such as next of kin

The only demographic details visible on a flagged PDS record will be the NHS Number, name, date of birth and gender.

No other demographic details will be displayed, including the ones listed above.

The demographic information is still held, just not visible.

As at the end of July 2010, some 2170 PDS records were flagged as sensitive.

If your demographics record is restricted then your GP will not be able to do the following:

• Refer you to a specialist via "Choose and Book"
• Send and receive your electronic GP records to or from another GP surgery via GP2GP
• Issue you with a barcoded-prescription via the Electronic Prescription Service (EPS)

However your GP:

• Can still refer you to a specialist by all the other more usual methods (letter, fax, phone, email)
• Will send and receive, and read through your GP records as necessary (just not electronically), and will summarise the information onto the surgery computer system
• Can and will issue you with prescriptions as you need it (just not barcoded)

(Many GP practices do not use Choose and Book anyway, many cannot use GP2GP and some do not use EPS)

Setting your PDS flag as sensitive:

• Will IN NO WAY affect the medical care and treatment that you receive from your GP surgery
• Will IN NO WAY affect the ability for your GP to refer you to a specialist for further care, should this be necessary
• Means you remain FULLY (and legally) entitled to all the NHS care that you require, either from a GP, hospital A&E department or a hospital specialist, wherever you are in the UK
• Means you will NOT be opting out of the NHS in any way

GP surgeries and hospitals have their own patient administration systems (PAS) for maintaining patient details such as addresses and telephone numbers. The PDS synchronises one to another, although GP surgeries rarely update their own systems from the PDS.

If your demographics record is restricted then it is advisable to do the following.

At your GP surgery:

• Always let your GP surgery know if you change your name, address or telephone numbers
• Remind your GP that your PDS record is blocked if your GP intends to refer you to a hospital specialist. Your GP can then point out that the hospital need to ensure that their records match the demographic details given on the GP referral letter

If you do use hospital or NHS services other than your GP surgery:

• Ring or write to them to ensure that they have your current and accurate demographic details
• Ring or write to them every time that your name, address or telephone numbers change

The process is as follows:

• Complete the request form - this can be downloaded here.
• Hand this form to your GP or surgery, together with a copy of the Guidance for healthcare staff if you wish
• Your GP will fax the form to the National Back Office, or scan it and then email it via the NHSnet
• The National Back Office will set the sensitive flag as a matter of urgency and then confirm in writing with your GP once the process is complete

Yes, of course we do. Every day. GPs share information about patients all the time. But it is selective information, appropriate information, and only shared amongst relevant NHS staff.

If your GP has to admit you to hospital, they will discuss your case with the on-call hospital doctors, and often write a letter as well giving your relevant medical history. But it is selective information, appropriate information, and destined only for the hospital doctors.

GPs discuss patients with other members of the primary health care team - other GPs in the surgery, practice nurses, district nurses, midwives, health visitors, counsellors, psychologists, dieticians etc. We share information with our secretaries and admin staff so they can organise referrals, appointments and obtain test results. Again, selective information, relevant information and only with those who need to know.

Very rarely, GPs share information without informing the patient when it is a matter of life and death or there is a serious risk to the health and safety of patients or it is overwhelmingly in the public interest to do so.

But:

• We don't make your medical records available to hundreds of thousands of people
• We don't make your medical records available to the Department of Health, or any other government agency
• We don't make your medical records available to the Primary Care Trust or Strategic Health Authority
• We don't make your medical records available to medical researchers or pharmaceutical companies (unless we have your explicit consent)
• We don't make your medical records available to journalists or commercial organisations
• We don't sell your medical records to anyone
• We don't upload your medical records anywhere without your explicit consent
• We remain the Data Controller for your surgery records

The ability or need for your GP to share your medical information appropriately and when required does not change whether you opt out of, or opt in to, the NHS Database. Opting out does not mean refusing to allow your GP to ever share your information, it simply means refusing for your data to be uploaded to the NHS Database - and nothing else.

The NHS Database is often touted as "lifesaving". That is, if you were to fall ill in Torquay (instead of Yateley) then medical staff (e.g. in A&E) would have access to your medical history (assuming the IT worked). And this might just save your life.

Perhaps:

• If you fell ill with a life-threatening illness or condition, and
• You actually suffered from any significant medical conditions or had any serious (anaphylactic) allergies, and
• If you were not in your local hospital A&E, or at your local out-of-hours GP surgery, and
• If you were unable to convey your own medical history, medication and allergies yourself, and
• You were unaccompanied, or accompanied by someone who did not know your medical problems, and
• If you were not already carrying any form of medical documentation (e.g. repeat prescription), and
• If you were not already carrying any other form of medical information device (e.g. MedicAlert, SOS Talisman, Alert card, Zaptag), and
• If your condition was such that it would be impossible to wait until medical staff could contact next of kin or family members for information, and
• If your condition was such that it would be impossible to wait until medical staff could contact your GP surgery for information, and
• If the highly-trained A&E staff were unable to treat you appropriately based on any history (e.g. from witnesses or passers-by), examination and immediate investigations, and
• If you were able to be positively identified (without which staff could not look up your NHS Database record)

then maybe, just maybe, access to your NHS Database information might make a life-saving or material difference to your immediate treatment.

In Hampshire, just 1 in 500 attendees to the few enabled A&E departments have their "Hampshire Health Record" (Hampshire's local version of the NHS Database) accessed and checked.

At Frimley Park Hospital (the local NHS hospital to us here in Yateley) staff who have access to the Summary Care Record only have access to demographic data (name, address, DOB etc) held within the system. They do not have access to the clinical record itself.....

No doctor in A&E will ever ignore a MedicAlert bracelet or SOS Talisman.

Within hospital outpatient departments and clinics, the Summary Care Record is hardly used at all. Across England, fewer than 20 summary care records are accessed per week.

For some people, making relevant medical information available to emergency medical staff can be very beneficial, for a few possibly life saving. For the vast majority it will be of little or no use.

If you think that you might really benefit from making your medical information available to others if you ended up in A&E, or if you needed to see an out-of-hours GP, then discuss this the next time that you see or speak with your GP.

The Summary Care Record is not the only way to make such information available. Other ways (see later in this website) are capable of providing information that :

• Is far more comprehensive than that stored in a Summary Care Record
• Allows you to provide information on non-prescription medication that you take, and medication prescribed by a doctor other than your GP
• Ensures that you remain in total control of the information
• Ensures that you control who sees your information, and when
• Ensures that the information will be available to medical staff instantly
• Ensures that your information is guaranteed to be seen by medical staff
• Ensures that your information is available even if the IT/computers/phones aren't working
• Ensures that your information is available even if the A&E, or out-of-hours GP, isn't yet connected to the NHS Database
• Ensures that your information will be available world-wide should you choose so
• Ensures that you (+/- your GP) decide the information that you want to be made available, or ought to be available
• Ensures that you (+/- your GP) can keep the information accurate, up to date and relevant
• Ensures that your information will not be widely shared or disseminated
• Ensures that your data will not be uploaded to yet another gigantic government database

And after considering everything you still decide that a Summary Care Record really is the best option for you, then tell your GP and give your explicit consent for your records to be uploaded.

The NHS Database is now being touted as the miracle answer to communicate patient wishes and end-of-life care plans, particularly in terminally ill patients. The assumption is that the wishes of people approaching the end of their life are not always conveyed to those who might need to know them (principally A&E departments). The NHS Database is, apparently, the answer.

If you ask any GP, the main problem with patient wishes and end-of-life care plans is that they are not commonly discussed (even among families), formulated and recorded, let alone disseminated and shared. In fact, less than one in three people have discussed how they would want to be cared for at the end of their life with friends/family/loved ones. Many terminally ill patients (understandably) seek to avoid such discussions, and it can be hard for health professionals such as District Nurses and GPs to broach the subject.

The Gold Standards Framework (GSF) is a systematic evidence based approach to optimising the care for patients nearing the end of life in the community, and is used by many GP surgeries. The GSF Home Pack can be given to patients to help enable better sharing of information and to keep important documents together. To this pack could be added shared medication records, as well as the all important care plans.

Advance care planning is about patients expressing their wishes and preferences about their future care, such as a choice to die at home. It can also include, but does not have to, advance decisions to refuse treatment. There are basically two aspects to advance care planning.

Advance Statements (these are not legally binding) convey people's preferences and wishes about their future care. These statement are dynamic and designed to be adapted and reviewed as needed. The GSF provides one such template, but others, such as Preferred Priorities for Care (and patient guidance) are also used.

Advance Decisions (formerly known as Living Wills) clarify refusal of treatment or what patients do NOT wish to happen to them in the future. These can be legally binding, and may include a Do Not Attempt Resuscitate order (DNAR). One such example is available here, but others exist from the Patients Association (here), The Alzheimer's Society (here, and form), and Age Concern (here).

All of these can be kept together at home (in a safe place where they can easily be found), available to family, friends and any health professional (GP, Nurse, Consultant, Paramedic) who visits the patient. The folder can be taken with the patient if they go for a hospital or hospice appointment, if they visit their GP or if they are admitted to hospital by ambulance. Copies of the documents should be provided to your GP and Consultant together with any updates. Family or close friends should be informed of the wishes and the location of any documents. Carry a card or statement on your person, explaining that you have made an Advanced Decision to Refuse Treatment and where it can be found.

A copy of the form(s) can be placed in a "message in a bottle" container which can be placed in the fridge (if this is the case then a sticker bearing a green cross on a white background will have been placed on the inside of the front door and on the door of the fridge).

Advance Statements and Decisions can be sent to local out-of-hours GP organisations and be available when necessary. In some parts of the country, Advance Decisions are sent by GPs (with the patient's permission) to the local Ambulance Trust as well. And there's nothing stopping these documents being sent to and kept by local A&E departments.

Adastra also offers their End of Life Care Register, a more detailed version of their Web Access software (see later in this website) but specifically for terminally ill patients. This may allow Advance Statements and Advance Decisions to be made available in detail to local out-of-hours clinicians by uploading them (in full) to the local out-of-hours database via a secure web portal (the out-of-hours database is only accessible by staff working in the local out-of-hours centre, and has nothing whatsoever to do with the NHS Database).

Wishes and preferences, statements and decisions can already be made available and communicated widely.
The NHS Database is not necessary for that.

But the plans have to be dicussed, thought about and recorded in the first place, and so often this does not happen.
Uploading everyone's medical records to the NHS Database will not change that.

The NHS Database is touted as a solution as "any coded information and associated free text entered in the GP IT system could be sent as part of the GP summary to the Summary Care Record". But GPs do not enter vast amounts of free text, and very few (if any) fully transcribe Advance Decisions or Statements into this sort of free text (we would scan the whole document into the record). The free text on the NHS Database (and that's assuming that everyone dealing with the patient will have a smartcard, be able to logon and read the database record in the patient's home) will simply not be able to convey the level of detail that either a comprehensive home pack folder or sending/uploading the plans to the local OOH database could.

GPs who oppose the Summary Care Record object to the advancement of IT in medical care...
Not true. UK GPs have been, and remain, at the forefront of the innovative use of IT and electronic records.

GPs who oppose the Summary Care Record object to medical research and audit from patient records...
Not true. The Summary Care Record contains (at first) very limited information, and the core data is of no value to researchers. The data so desperately demanded by researchers lies within the detailed, GP and hospital-held electronic records. It is not held, and never will be held, within the Summary Care Record.

We need the Summary Care Record to prevent the frustration of incomplete or lost patient records...
Not true. The SCR won't prevent this - but the safe and secure electronic storage of detailed hospital records almost certainly will. The SCR is a poor, untrustworthy and potentially dangerous substitute for lost detailed care records.

Patients believe that their GP data is already widely shared in this way so the Summary Care Record creates no problems...
Not true. Patients understand that their GP will share information when necessary and appropriate, but patients do not believe that their GP information is accessible nationwide by hundreds of thousands of NHS and non-NHS workers.

Opting out of the Summary Care Record means that your GP cannot share any information about you...
Not true. Opting out means that your data is not uploaded - and that is all. Your GP can and will still share information about you with other healthcare providers when required and if appropriate.

We need the Summary Care Record to enable computerisation of medical records in General Practice...
Not true. UK GPs have been world leaders in the computerisation of their patients records, using some the of the most advanced software available.
The Summary Care Record has no bearing on this.

We need the Summary Care Record to enable computerisation of medical records in hospitals...
Not true. UK hospitals and trusts continue to move towards electronic medical records.
The Summary Care Record has no bearing on this.

We need the Summary Care Record as the way in which the NHS stores and manages health records is changing...
Not true. Whether the Summary Care Record project continues or stops, whether it remains an opt out or becomes and opt in scheme, and no matter how many people opt out of having a Summary Care Record, GPs and hospitals will continue to hold and strive to improve the safe and secure implementation of electronic patient records.
The Summary Care Record is irrelevant to this aim.

The Summary Care Record will be restricted to essential information for emergency care, that is only a patient's demographic details, medications, allergies and adverse reactions. ...?

FALSE: The "core"data - which has NOT been "scaled back" - is the MINIMUM that will be uploaded to the Summary Care Record.

Your Summary Care Record is capable of near-limitless enrichment by your GP and by hospitals and clinics.

Uploading your medical records to the NHS Database is the only way to make your demographic information available to doctors if you were admitted to Accident & Emergency or needed to see an out-of-hours GP...?

FALSE: Your demographic data (name, address, DOB, telephone number, GP details etc) hs already been uploaded as part of the PDS. Those details are available to anyone with an NHS Smartcard.

You do not need to upload your records to the NHS Database to make demographic information available to medical staff in an emergency. That data has already been uploaded and is available to medical staff whether you have a Summary Care Record or not.

Uploading your medical records to the NHS Database is the only way to make your medical information available to doctors if you were admitted to Accident & Emergency or needed to see an out-of-hours GP...?

FALSE: There are a many other ways for you - or your GP - to make information available to medical staff in an emergency, should your medical circumstances warrant it (see later in this website).

You do not need to upload your records to the NHS Database to make information available to medical staff in an emergency.

Uploading your medical records to the NHS Database is essential to help medical research...?

FALSE: The Summary Care Record neither is nor ever will be a worthwhile source of information for medical researchers. However, your detailed GP records, as held by your surgery, is, and many GP practices already participate in medical research, inviting their patients get involved if they wish to.

You do not need to upload your records to the NHS Database to help medical research.

You will have to upload your medical records to the NHS Database for your GP to refer you to a specialist for further care, should this be necessary...?

FALSE: Opting out will IN NO WAY affect the medical care and treatment that you receive from the Oaklands Practice (or any other GP surgery), or affect the ability for your GP to refer you to a specialist for further care, should this be necessary. You remain fully (and legally) entitled to all the NHS care that you require, either from a GP, hospital A&E department or a hospital specialist, wherever you are in the UK.

You do not need to upload your records to the NHS Database for your GP to refer you to a specialist for further care.

You will have to upload your medical records to the NHS Database for your GP to be able refer you to a specialist by secure email or online...?

FALSE: Opting out will IN NO WAY affect the ability of your GP to do this, if your GP wishes to do so. Some hospitals and specialists are happy to receive referrals from GPs by nhs.net email (which is the only BMA and Department of Health approved email service for securely exchanging clinical data between NHS users). Hospitals are now receiving referrals from GPs online via secure encrypted portals.

You do not need to upload your records to the NHS Database for your GP to be able to do this.

You have to upload your medical records to the NHS Database before you can email your GP or your surgery...?

FALSE: Many GP surgeries, and/or individual GPs, are happy to receive emails from patients. If you are unsure whether your GP or surgery allows this, just ask them.

You do not need to upload your records to the NHS Database to email your GP or surgery.

You have to upload your medical records to the NHS Database before you can request a repeat prescription by email or online...?

FALSE: Many GP surgeries are happy to receive email repeat prescription requests from patients. Some GP surgeries have an online prescription ordering facility. If you are unsure whether your GP or surgery allows this, just ask them.

You do not need to upload your records to the NHS Database to request a repeat prescription by email or online.

You have to upload your medical records to the NHS Database before you can book an appointment with your GP online...?

FALSE: Some GP surgeries are already offering patients the ability to book GP appointments securely online.

You do not need to upload your records to the NHS Database to book an appointment with your GP online.

You have to upload your medical records to the NHS Database before your GP can use GP2GP, Choose & Book or the Electronic Prescription Service ...?

FALSE: Many practices are already using GP2GP electronic transfer of GP records and the Electronic Prescription Service. Some practices are still using Choose & Book. Patients who have opted out of the NHS Database can still be referred through Choose & Book.

You do not need to upload your records to the NHS Database before your GP can use GP2GP, Choose & Book or the Electronic Prescription service.

You have to upload your medical records to the NHS Database before you can look at your medical records...?

FALSE: The Data Protection Act already gives you the right to access your own health records as held by your GP surgery - you just have to ask.

In fact, some GP surgeries are already offering patients the ability to access their surgery-held medical records securely online.

The NHS Database is being touted as a way to:

• "see summaries of other episodes of care, for example a discharge summary from a hospital"
• "remind yourself about important things said to you about your treatment"
• "inform NHS staff about your needs and how you want to be treated"
• "be able to access an electronic copy of your records and pass this, in standard format, to any organisation or person of your choice"

Well, all of these are easily achieved by asking your GP:

• Your GP can instantly print off a discharge summary or hospital clinic letter for you. You just have to ask.
• Many GPs will print off factsheets and summaries for patients during a consultation. If not, you just have to ask.
• Your GP can record any particular needs or wishes that you have about your medical care. You just have to ask.
• Your GP can create an electronic copy of your medical records - with as much detail as you wish - and give this to you (for example, as a .doc or .pdf file exported onto an encrypted CD-ROM).

And all without the NHS Database.

You do not need to upload your records to the NHS Database to access your medical records.

My GP will be angry if I opt out...?

FALSE: Your GP will not be angry, annoyed, irritated or in any way bothered if you opt out (or indeed, opt in).

Many GPs and their families have already opted out of the NHS Database.

The decision to opt out of or opt in to the NHS Database is yours and yours alone to make.

My GP surgery is obliged to upload medical records to the NHS Database...?

FALSE: GP Practices can choose not to take part in the Summary Care Record programme.

GP practices are under no obligation to upload medical records to the NHS Database (or Summary Care Record).

If I have a Summary Care Record, and apply for an Advanced HealthSpace account, then I will be able to view my entire GP record or my hospital records online...?

FALSE: You will only be able to see what's in your Summary Care Record (which might not be very much).

Having a Summary Care Record will not give you online access to your GP or hospital records.

You have to upload your medical records to the NHS Database before you can register for, and use, a Department of Health's online Advanced "HealthSpace" account...?

FALSE: If you really want to use Advanced HealthSpace (and not many people want to) then you can do so whether you have opted out of the NHS Database or not.

You do not need to upload your records to the NHS Database before you can register for, and use, a Department of Health's online Advanced "HealthSpace" account.

I have to wait until the NHS Database goes live in my area before I can opt out...?

FALSE: You do not have to wait until the Summary Care Record goes live in your PCT, or until you receive the public information programme mail out. You will not have to opt out a second time when the database goes live in your area.

You can opt out of the NHS Database at any time, right now if you wish. And you can opt back in at any time in the future.

I have just 12 weeks from receiving the information pack to decide whether to have a Summary Care Record or not...?

FALSE: Not if you opt out.

If you opt out of the NHS Database then you can opt in - and have a Summary Care Record - if and when you decide, at any time in the future. You will not be under any deadline if you opt out.

If I wish to opt out of the NHS Database then I have to contact my PCT to do so...?

FALSE: Absolutely not. Do not send your opt out form/letter to the PCT and do not telephone, email or opt out in person to your PCT. You opt out through your GP surgery.

Your GP is the data controller for your medical records, not the PCT.

You have to opt out in person and make an appointment to see your GP or the local Primary Care Trust to do so...?

FALSE: Absolutely not, although you can opt out simply by asking your GP the next time that you see him or her.

You do not need to opt out in person - you can opt out verbally if you wish. You do not need to fill in an opt out form if you do not wish to. You do not need to make an appointment with your GP to opt out and you most definitely do not need to discuss opting out with anyone first.

If you opt out of the NHS Database, your GP will send your details and the fact that you have opted out to the Primary Care Trust, the Strategic Health Authority or the Department of Health...?

FALSE: Your GP will not - and cannot - do this if your opt out form (such as the one downloadable from this website or The Big Opt Out) states that your opt out is given in confidence.

Your GP will not inform the PCT, SHA or DoH if your opt out is given in confidence.

My children's medical records will not be uploaded to the NHS Database until they are at least 16 years old...?

FALSE: Everyone's medical records will be uploaded to the NHS Database, no matter how young or old. Children will not be told that their records are being uploaded; it will be up to their parents or guardians to inform them.

Your children's medical records will be uploaded to the NHS Database unless you opt them out.

If my children's records are uploaded to the NHS Database then in the future they will be always able to get their data deleted if and when they want, when they are old enough to understand and make that decision...?

FALSE: They will never be able to get their uploaded data deleted.

Your children will never be able to get their data deleted from the NHS Database if you allow their medical records to be uploaded. They will not be able to place themselves in the position that they would have been had you prevented their records from being uploaded in the first place.

I need my GP's permission before I can opt my children out of the NHS Database...?

FALSE: Absolutely not, the decision to opt out, or opt in, your children to the NHS Database is yours to make, after discussion with your children as appropriate.

You do not need to see, discuss with or seek the permission of your GP before opting your children out of the NHS Database.

You cannot check that your medical data is accurate before your GP uploads it to the NHS Database...?

FALSE: You have the right to see a copy of your medical data before it is uploaded by your GP surgery to the Summary Care Record (NHS Database).

You can check that the summary data that your GP holds and will send to the NHS Database is complete and accurate before any data is uploaded. You just have to ask your GP surgery to do this.

Just like your surgery records, your GP will be the Data Controller for your records uploaded to the NHS Database...?

FALSE: Your GP will not be the Data Controller for your uploaded records. The Secretary of State for Health will be in total control of your data.

Your GP will not be the Data Controller for your uploaded records. He/she will not have any control over your data whatsoever.

If you agree to have your records uploaded to the NHS Database then you can change your mind at any time in the future and get your data deleted...?

FALSE: If you allow your records to be uploaded then it will be virtually impossible to get your data completely deleted from the NHS Database. You can get your "visible" record "blanked" or "masked", and this will limit those who could clincally access your data, but all your uploaded data will remain intact on the NHS Database forever.

It will be impossible to get your data deleted from the NHS Database if you allow your medical records to be uploaded. You will not be able to "change your mind" and place yourself in the position that you would have been had you prevented your records from being uploaded in the first place.

The information in a Summary Care Record is only accessible by staff directly involved in a patient's treatment...?

FALSE: Anyone with an NHS smartcard and the appropriate permissions (RBAC roles) on the card can access any Summary Care Record, anytime, anywhere.

Hundreds of thousands of NHS and non-NHS workers will have access to every single Summary Care Record.

My GP can control and limit those who can access my Summary Care Record with a smartcard...?

FALSE: Anyone with an NHS smartcard and the appropriate permissions (RBAC roles) on the card can access any Summary Care Record, anytime, anywhere. Your GP does not control - in any way - who has that activity role.

Your GP has no control over who can access your Summary Care Record.

If you agree to have your records uploaded to the NHS Database then you will be informed each and every time anyone - anywhere - accesses your medical record, or informed at regular intervals as to how many times your record has been accessed and by whom...?

FALSE: The NHS will not volunteer this information to you.

You will have to request this yourself and directly from the Department of Health - your GP cannot provide you with this information.

If I am unhappy with any medication that my GP prescribes for me being automatically uploaded to my Summary Care Record then I can stop that from happening...?

FALSE: You cannot stop a record of the medication that your GP prescribes from being automatically uploaded to the SCR, even if this is medication clearly used to treat sensitive or embarrasing conditions, and nor can your GP stop this upload .

It is often easy to deduce a patient's diagnosis from the medication being used to treat him or her. Ask any doctor what the diagnosis is (place mouse over drug name) when the following are prescribed:

• Viagra®
• Methadone
• Asacol®
• Scheriproct®
• Oxazepam
• Priadel®
• Amisulpiride
• Edronax®
• Strattera®
• Xenical®
• Aricept®
• Sinemet®
• Rilutek®
• Campral EC®
• Retrovir®
• Zithromax® 1g stat
• Clomid®
• Canesten 10% VC®
• Depo-Provera®
• Xatral®
• Arimidex®

A record of any and all medication that your GP prescribes for you will be automatically uploaded to the SCR and your GP cannot prevent this. If you are not happy about this then you should opt out.

If I have an Enriched Summary Care Record then no information beyond allergies, medication and adverse reactions will be uploaded without my explicit consent...?

FALSE: The 93C2/9Ndn codes allow diagnoses, procedures and operations to be uploaded under the guise of Reasons for Medication and Reasons for Medication Cancellation.

Your explicit consent for this will not be sought. And you cannot stop this upload from happening.

If I have opted out, or my GP has added the 93C3/9Ndo code into my GP records, then I cannot change my mind and have just a basic (core) Summary Care Record...?

FALSE: All your GP has to do is to delete the opt-out codes from your GP records, ensuring that the reason for the deletion is clearly recorded.

You can have a Basic Summary Care Record or an Enhanced Summmary Care Record, whether you have previously opted out or not.

If I have an Enriched Summary Care Record then no information from my hospital records will uploaded to my Summary Care Record...?

FALSE: The 93C2/9Ndn code will almost certainly be the foothold required to allow uploading of Release 2 data from hospitals and clinics to the Summary Care Record.

An Enriched Summary Care Record can be enriched by your GP and hospitals and clinics.

My explicit consent will always be sought before any information from my hospital records is uploaded to my Summary Care Record...?

FALSE: Your permission may not be sought. No one knows, and the Department of Health will not say. Details of hospital clinic and A&E attendances, and in patient summaries, may be added automatically. It is entirely up to the hospital or clinic to seek your permission.

Your explicit consent for this may not be sought.

You will have to upload your medical records to the NHS Database to continue being registered with an NHS GP...?

FALSE: Absolutely not.

You do not need to upload your records to the NHS Database to continue being registered with an NHS GP.

You will have to upload your medical records to the NHS Database to continue being in the NHS...?

FALSE: You will NOT be opting out of the NHS in any way if you do not allow your records to be uploaded.

You do not need to upload your records to the NHS Database to continue being in the NHS.

In a Freedom of Information response, Frimley Park Hospital have confirmed that thay have no intention of refusing to provide, or of refusing to continue to provide, medical treatment to patients who have either opted out of the NHS Database and/or chosen not to have a Hampshire Health Record.

There are approximately 8300 GP practices in England.

Pulse Today have created an excellent Google map of the Summary Care Record rollout, which I have added to with information gleaned through FOI requests. This shows how many practices are uploading per PCT.

Please click on the image below to open the interactive map in a new window.

If you opt out then your medical records will remain under GP–control and not be uploaded until you give your explicit consent for that to happen.

Opting out does not mean that your GP will keep your medical records on paper instead of electronically.

The Summary Care Record is not changing the way in which your GP or your hospital health records are stored.

Some GP surgeries have pledged not to upload their patients' records without their explicit consent by adding the 93C3/9Ndo read code to all their patients' records (as The Oaklands Practice has done). But others have not clearly and openly done so.

• Your records cannot be uploaded if you have opted out, no matter what pressure a government or PCT may apply to coerce or force GPs to upload patients' records
• Opting out will ensure that your wishes are recorded in your notes and clearly visible should you have need to register with a new GP surgery (perhaps one that is planning to upload records to the NHS Database)
• Opting out will go a long way towards ensuring that your records will not be "accidentally" uploaded
• Opting out will ensure that your medical data from hospitals and specialist clinics cannot be uploaded
• Opting out will give you the time to discuss your medical history with your GP, verify that your GP-held data is complete and accurate, and decide whether or not you wish to have a Summary Care Record

Please don't allow this to happen to your family's medical records.

If you opt out now then this will ensure that your family's records are not uploaded UNTIL YOU OPT IN AND GIVE YOUR EXPLICIT CONSENT FOR THIS TO HAPPEN.

And if you are certain that your actually want your records uploaded to the NHS Database, then tell your GP and give your explicit consent for this to happen.

Download the " DO YOU WANT A SUMMARY CARE RECORD? " algorithm, below, as a pdf

Download the " READ CODES AND THE SCR " factsheet, below, as a pdf

If you are certain that you want a Summary Care Record (if you are unsure then please discuss it with your GP) then you can opt in by giving your explicit consent to your GP.

You have the right to see a copy of your medical data before it is uploaded by your GP surgery to the Summary Care Record (NHS Database).

ANY communication (in person, by letter, email, fax, or telephone) to your GP stating your wish to opt in is valid.

Remember to tell your GP whether you want your SCR to be a basic SCR (consisting of core data only) or an enriched one.

• You can hand your opt in form in to your GP surgery
• You can post your opt in form to your GP surgery
• You can fax your opt in form to your GP surgery
• You can email your opt in form to your GP or GP surgery (if they have an email address)
• The same form can be used for your children (or for any children under the age of 16yrs for whom you have parental responsibility)
• If you prefer, just write a letter to your GP stating that you are giving your explicit consent for a Summary Care Record to be created from your medical records.

Do NOT send your opt in form to your local PCT. The PCT is not the data controller for your medical records, your GP is.

• Stating your wish to opt in to your GP the next time that you see him/her
• Stating your wish to opt in to your GP the next time that you speak with him/her on the telephone
• Stating your wish to opt in to your GP the next time that you email him/her

Your children may be of an age and of sufficient maturity to be competent to decide for themselves whether they want a Summary Care Record or not.

Remember - if you opt in and consent to a Summary Care Record then you may be consenting to it being enriched with further data from your GP record unless you tell your GP otherwise.

Remember - if you opt in and consent to a Summary Care Record then your medical data from hospital or clinic visits (so called Release 2 information) could be uploaded to the NHS Database.

The Summary Care Record that you might consent to now will almost certainly will be very different to the Summary Care Record that will roll out in your area in the years to come.

And on the Isle of Wight, there are no plans to rollout the Summary Care Record in 2010/11.

A lot can and will change with the SCR in years to come and you may not have consented to such changes if you do opt in now.

Opting out of the NHS Database is quick and easy.

You do not have to wait until the NHS Database goes live in your area to opt out. You can opt out right now and your wishes will be recorded by your GP and will ensure that your data is not uploaded when the programme does go live for your surgery.

ANY communication (in person, by letter, email, fax, telephone or text) to your GP stating your wish to opt out is valid.

• You can hand your opt out form in to your GP surgery
• You can post your opt out form to your GP surgery
• You can fax your opt out form to your GP surgery
• You can email your opt out form to your GP or GP surgery (if they have an email address)
• The same form can be used for your children (or for any children under the age of 16yrs for whom you have parental responsibility)
• If you prefer, just write a letter to your GP stating your wish to opt out of the NHS Database
• Ensure your GP knows that you do not want anyone else to be informed of your decision to opt out

Do NOT send your opt out form to your local PCT. The PCT is not the data controller for your medical records, your GP is.

• Stating your wish to opt out to your surgery in person
• Stating your wish to opt out to your GP the next time that you see him/her
• Stating your wish to opt out to your GP the next time that you speak with him/her on the telephone
• Stating your wish to opt out to your GP the next time that you email him/her

Do NOT ring, email or attend your local PCT to opt out. The PCT is not the data controller for your medical records, your GP is.

• You do not need to wait until the NHS Database goes live in your area to opt out. You can opt out right now
• You do not need to opt out in person
• You do not need to make an appointment with your GP (or practice manager) to opt out
• You do not need your GP's permission to opt out
• You do not need your GP's permission to opt out your children (or any children under the age of 16yrs for whom you have parental responsibility)
• You do not need to ring the NHS Care Records Service information line (0845) number to opt out
• You do not need to give any reasons why you wish to opt out
• You do not need to state your ethnicity in order to opt out
• You do not need to state whether you work for the NHS in order to opt out
• You do not need to justify your right to privacy
• You do not need to need to make a formal request under the Data Protection Act to opt out
• You do not need to "discuss" your opt out with your GP, your surgery, your PCT or with anyone else

Alternatively, you can download a standard opt out form from The Big Opt Out.

If you prefer, here is the offical Connecting for Health Summary Care Record opt out form.

If you are registered at the Oaklands Practice you do not need to opt out of the NHS Database.
We will not upload your records without your active and explicit consent.

There is no doubt that some patients are finding it very difficult to opt out. Once you have opted out, however you have done so, then there are a number of ways that you can check that the opt out code has actually been entered into your GP records (especialy if you have doubts as to whether your practice is actually recording opt outs from the Summary Care Record).

You can simply ask your practice. You could ask a receptionist, or contact the practice manager, or contact your GP. It takes just seconds to confirm that the code has indeed been added to your records.

You can ask your GP, or a nurse, to check that the code has been added when you next have need to attend for an appointment at your practice.

You could write to your practice and ask them to confirm this to you (enclose a SAE if you prefer).

Any of the above informal methods should ensure that you are confident about your opt out status. However, some practices are being difficult and obstructive when it comes to Summary Care Record opt outs.

The last resort is to use your rights under the Data Protection Act. You have the right to confim what information an organisation (such as your GP practice) holds about you, and this includes your health records. This is known as a Subject Access Request (SAR).

If you want to see your health records, you don't have to give a reason.

You can ask your practice to allow you to inspect your records (that is, view them at the surgery but not have a copy of the records). This is simple and you can ask the practice manager or receptionist to point out to you the opt out read code in your records. Accessing your records in this way can be free (if your records have been updated or added to in the previous 40 days), or at most a fee of £10 can be required by the practice.

You can ask for your practice to provide you with a copy (printout) of all computerised entries relating to the 93C3 opt out code, clearly indicating the date that the code was entered in your GP records. This is likely to be a one line printout. Accessing your data in this way will incur at most a fee of £10.

Finally, you can ask your practice for a copy (printout) of your detailed computerised medical records (all entries). Make sure you specify that you only wish for records stored on the computer, not held on paper. If you are simply confirming your opt out, you could ask just for records from the day before your submitted your opt out to the present day. This will greatly limit the size of the printout (and possibly the fee). When you receive the printout, you should be able to see the opt out read code recorded amongst the other information. Accessing your records in this way will incur at most a fee of £10.

Useful information on submitting a subject access request can be found in this leaflet from the Information Commissioner.

If you are registered at The Oaklands Practice and you have any questions whatsoever about the Summary Care Record then please do contact me.

Dr Neil Bhatia
Caldicott Guardian for the Oaklands Practice

The Hampshire Health Record is the local version of the NHS Database.

Just like the NHS Database, the HHR is a massive, centralised database of GP records, accessible to many hundreds (and soon, thousands) of people across Hampshire.

Just like the NHS Database, you have to opt out to prevent your (entire) GP records being uploaded.

That's assuming that you even know about it, and many hundreds of thousands of Hamsphire residents do not know about it or have any idea what has happened to their GP records.

You can find details of the Hampshire Health Record here: www.hampshirehealthrecord.info.

If you are registered at the Oaklands Practice you do not need to opt out of the Hampshire Health Record.
We will not upload your records without your active and explicit consent.

This non-commercial website represents the personal views of Dr Neil Bhatia, GP and Caldicott Guardian for the Oaklands Practice

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