care.data – your medical records will soon be up for sale!

We are making a small but important digression from our usual themes but the information contained below is of such significance (and of particular interest to alcoholics and to addicts generally) we believe it is worth it.

The government is currently planning to create and implement two data bases: care.data and the Summary Care Record. 

“care.data and the Summary Care Record (SCR) are two entirely separate projects."

care.data in a nutshell:

• “care.data is not anonymous
• Sensitive and identifiable information is going be extracted from your GP records and uploaded to Health and Social Care Information Centre (HSCIC) databases
• Sensitive and identifiable information has already been extracted, and will continue to be extracted from your hospital records and uploaded to HSCIC databases
• You will not be asked for your explicit permission or consent before these extractions take place
• The two sets of your information will be combined into one database and subsequently released, in various formats, to organisations within and outside of the NHS
• You will not be asked for your explicit permission or consent before your uploaded data is released to these organisations
• The information is not going to be available to doctors and nurses, and so will not be used to provide direct medical care
• The HSCIC will keep your uploaded information indefinitely - it will never be deleted, but continuously added to
• Information about you will not be released or sold in just an aggregate (unidentifiable) format
• You cannot control when, to whom, for what purposes, and what specific information uploaded from your GP record the HSCIC releases about you
• You cannot specify that your information is only used for the purpose of medical research”

On the other hand the Summary Care Record (SCR) is “a national centralised database of medical information (allergies and medication, initially) extracted and uploaded from patients' GP records. This project's aims are to make this information potentially available to emergency doctors (in A&E and GP out-of-hours centres countrywide).”

The Summary Care Record does seem to serve some clinical purpose although there are still questions to be answered as to the sufficiency of data security. What safeguards are in place to ensure that this information is not leaked (or sold) to outside interested parties? Currently fraud in the NHS is estimated to cost the taxpayer up to £5 billion (yes £5 BILLION!) a year. The sale of such data might prove to be too lucrative an opportunity to pass up so easily!

The care.data scheme, however, serves no clinical purpose and merely represents a 'data mine' ripe for financial exploitation.

The good news, however, is that you can OPT OUT of both if you choose! Simply go along to your local surgery and ask for the two relevant forms. You will need to opt out of each one separately. Opting out of one does not imply opting out of the other. Both forms should be on display. If they're not, ask why not and don't be fobbed off. Alternatively you can download the two forms from these sites, fill them in and take them along to your surgery.

care.data opt out form: pdf format
                                       .doc format 

Summary Care Record opt out form: pdf format 

By opting out two codes are added to your medical records which indicate you do NOT give permission for the data to be extracted. At a later date you may choose to opt in if you so wish. So if in any doubt opt out and research the information provided in the two sources cited below. 

“How can I be certain that my opt-out has been actioned by my surgery, and the codes added to my record?

If your opt-out form, letter, or fax has clearly stated your wish to opt-out of care.data, the codes that you want added, and your name/DoB, then your surgery will action your request appropriately, otherwise it would be in breach of the Data Protection Act and you would have every right to make a formal complaint.

You do not need to confirm that your opt-out has been registered, but if you are concerned that your surgery may not fully understand the process then the easiest way would be to:

• contact your surgery's practice manager (not your GP).
• request that she/he confirms that the opt-out codes have been added to your GP record - email confirmation would probably be easiest

If all else fails, you are entitled to make a subject access request (SAR) to look at your GP records yourself.

Because:

• your GP records are not exclusively electronic records, and
• the codes should have been added to during the 40 days preceding the SAR

your GP surgery must offer you the opportunity to inspect (i.e. view on a computer screen) your records free of charge, rather than providing you with a permanent copy of the records for a fee. Your GP surgery is also obliged to help you access the information within your record that you are looking for.

Faced with having to organise all of that, most surgeries will quickly confirm that the codes have been added.”

Sources: http://www.care-data.info/

Brief version: http://brief.care-data.info/ 

Remember! Neither democracy nor the NHS are safe in the hands of any government. Both are far too important to be left to the dubious care of our elected representatives. Their security (and integrity) depends always on an ever vigilant citizenry. As always the buck stops with US!

Cheers

The Fellas (Friends of Alcoholics Anonymous)

A pdf version of this entire entry can be downloaded here. Please forward it to your family, friends, work colleagues, and indeed anyone who is interested in maintaining their right to privacy. If we work together we can despatch care.data to the oblivion which it so manifestly deserves! (Note: the pdf contains no references to “The Fellas”, Alcoholics Anonymous etc and therefore your own anonymity will not be compromised).
 

Derby City/Derbyshire IG – the missives fly thick and fast … and rather flimsily!

We've received various communications now on the subject of the ““Murky goings-on in Derbyshire” involving the current wrangle between some of the Derby City meetings and the respective intergroup. What we have so far managed to conclude from these is someone somewhere is telling rather large 'porky pies'! To date we haven't decided conclusively who is but when we do then you can be quite sure that the hammer will fall!

The latest development in this saga however relates to a letter of complaint (purportedly) sent by Derbyshire NHS to the Intergroup:

“The contents of the letter is clear, alcoholic service users of the Crisis team within Derbyshire have experienced extremely unhelpful and very abusive behaviour at the aforementioned group [Derby City] and the NHS are advising intergroup that they will no longer be recommending that their service users go to this meeting.”

But in response to a query from the Derby City meetings Derbyshire NHS (Derby Crisis Intervention Team) responded thus (allegedly):

“Letter from Mental Health Crisis Team boss [Richard Morrow]

Hi …..,

Thank you for raising this with me earlier and the further information. I have made some further enquiries today following on from our conversation earlier.

I am going to write a letter to the Intergroup PO Box address requesting that someone contact me in relation to the letter that has reportedly being sent from the team.

I will be clearly stating that to my knowledge no communication has been sent on behalf of the service and that any comments received should not be considered the representative view of the Crisis Team or Derbyshire Healthcare Foundation Trust and should be disregarded.

I will further request that a copy be made available to me so that I can raise with any potential source the upset and disharmony that this can cause.

I will send a copy to you via e-mail which you are free to retain and use as you see fit.

I would just like to add that if a member of my team has played any part in the difficulties you and your group are currently experiencing then you have my unreserved apology.

Any comments of this nature are unsolicited and in my opinion inappropriate and do not reflect the opinions of myself, my team or indeed Derbyshire Healthcare Foundation Trust.

Sincerest regards,

Derby City and County South CRHTT”

(It should be noted that in neither instance were original copies of the above communications provided hence the use of the terms “purportedly” and “allegedly”)

Furthermore an allegation has been made that the General Service Office (York) instigated a series of “mystery calls to the [local] helpline” and that on the basis of these “confirmed the unsuitability of our members [ie. of Derby City group] for service”.

Apparently when GSO was queried about this by a representative of the Derby City group they provided the following reply (or as reported):

“The general secretary tell me that GSO have in fact never so much as received a complaint about us in 15 years, let alone opened a QA [Quality Assurance] department.......GSO have promised me a letter commenting on claims made as to their actions in this matter.”

In connection with the (alleged) suspension of Derby City group members from participation in the telephone responders' service the following policy statement applies (as set out by Derbyshire Intergroup):

"The group nominates the following members who are being sponsored into telephone service, either as a responder (permanent or reserve) and/or a 12 Stepper. All people listed must be regular attenders of THIS group (that means they attend this group most weeks). By putting their names on the form, the group is saying that they believe these people are able to carry the message of recovery to newcomers under the guidelines, and that they are reliable in performing service."

and:

“The forms are available via DIG and NLIG; so by definition any group in contact with their appropriate area intergroup has access to the form and therefore into the formal service mechanism. There are no rules, written or otherwise, that exclude any specific group or members from formal service. A group would simply need to attend intergroup to collect a form, complete it and return it. The accusation that "the cult dupe "in charge of" the helpline is driving this campaign. He has decreed that no-one who attends our meeting is ever to be allowed to do helpline or 12-step work under any circumstances" is simply untrue.”

and so it continues...... so much for AA unity!

But it would seem that we're not the only ones who are taking an interest in what precisely is going on in Derbyshire AA. We've recently been contacted by a reporter from the Derby Telegraph as follows:

“Hi there,

I am a reporter at the Derby Telegraph. I have just read the posting http://aacultwatch.blogspot.co.uk/2012/08/murky-goings-on-in-derbyshire-another.html with interest.

If you could keep in touch regarding anyone that may come forward with any information regarding AA meetings in the area would it be possible to see if they would be willing to come forward, anonymously if that is how they feel most comfortable, to talk about their experiences.

Thanks very much and hope to hear from you soon.”

Comment: The above represents the shape of things to come. If Alcoholics Anonymous is unwilling to put its house in order (and this sooner rather than later!) then inevitably others will take action! If we are unable to provide a safe environment for newcomers (and here we are not referring solely to the situation in Derbyshire but nationally) then there can be no other outcome than the referring agencies will discontinue recommending us to their clients and patients. If we cannot meet the absolute minimum standards of care and respect for those who come to us for help then we really don't deserve the trust of the society within which we operate. We continue to receive reports concerning vulnerable members who have committed suicide because of pressure placed upon them to desist the use of prescribed medication (the most recent in the Bournemouth area). The controlling, intrusive and abusive 'sponsorship' styles characteristic of the cult members who operate within AA are still very much in evidence. These practices simply extend licence to those 'control freaks/narcissists' who wish to 'play God' whilst simultaneously rendering their sponsees (or rather 'victims') impotent, and even regressed into an almost infantile state of dependency on their human 'Higher Power'. These departures from AA principles are a blight on the fellowship and if left unchecked will lead without doubt to its dissolution.

And where does the responsibility for all this rest? Take a look in the mirror …..

Cheers

The Fellas (Friends of Alcoholics Anonymous)

PS Our usual thanks to our various correspondents