The big opt out

[admin]

Hi all,

It was suggested that I link to the big opt out campaign because some people are very concerned that centralised computerised medical records will be used as a stick to beat drug users with and that people should know that they are within their rights to opt out of having their data uploaded.  More details here: http://www.nhsconfidentiality.org/?page_id=3
 
U

[Tony.B.]

Spot on.
Very interesting and thanks for a great link. I feel this should be shouted from the hilltops.
Best
Tony B

[Jules]

Yes, me too Tone.  I've already printed off the letter for several users round my way and will be doing more of the same.  Thanks for raising it Ursula.

Julie

[Jim]

how exactly are they going to be used as a stick?  I can see some positives though.  It will amke moving locality far easier.  It will make form filling much easier for GPs and might encourgemore of them into the field.  When going to hospital, prison or police custody they will automatically know your dose etc which can often cause untold harm.  Ditto leaving prison

[admin]

I completely see your point, Jim, and in a perfect world it would be a no-brainer, but the Alliance has heard from people who have been denied basic care because their doctors have made a moral judgement about them as a result of their drug use.  Often, the care they've needed has been completely or largely unrelated to their drug use, but because some medical professionals think "oh, they're drug users, this will be wasted on them", they don't get the treatment the rest of us take for granted. 
 
This is an exception, rather than the rule, but until the day that people can be sure they're not going to encounter prejudice when they go to the doctor about their athlete's foot or the flu or vibration white finger or pregnancy or diabetes or a suspicious lump, then they need to have the opportunity to make the decision not to have their files automatically accessible by medical staff.  I'm not suggesting for a second that everybody should automatically opt out - the benefits of a centralised system are very apparent - but people should know that it's an option.
 
Ursula

[simon]

If this does ever eventually work it will save a huge amount of work at each GP practice.
 When someone registers those records from birth need someone a Doctor or a Nurse to go through every bit of information and enter it onto the new practices computer system which is very time consuming and GP practices are performance managed on how well they do this.
Our practice no longer writes in the old style records, we use the computer system but still retain the old notes which take up a lot of space. Every hospital letter has to be computer coded and then scanned on to the system and in time these old records will be destroyed.
Blood tests from hospital come through a phone line (or something similar)encrypted at both ends and go straight into the patients records correctly coded so the system knows what tests have been carried out and nobody in our area needs to manually input the data. In time hopefully all hospital letters will be the same and just whizzes onto a patients records. Presently every member of staff inputs some hospital letters manually be it cardiology, mental health, or whatever and we all divvy the work out.

As regards treating patients who are on opiate substitutes won't it make life easier if someone moves or misses a pick-up. I wonder if an out of hours service would be more likely to prescribe for example to a patient on a bank holiday if they could see the records and know that that patient had maybe missed an apointment and had not had some medication and actually were not trying to blag a script ?
I think I can see more positives than negative, if it works.

[leecollingham]

With serious questions being asked about confidentiality and the quality/ability of the person entering the data, it gives great cause for concern.  However, if you were to opt for "The Big Opt Out", this would then mean you are unable to receive NHS care anywhere in the UK, so on this basis alone, i think people need to consider long and hard before they act. It could become very expensive,  for healthcare provision within a GP setting, let alone for someone in treatment for substance misuse or someone receiving specialist care.

[admin]

Lee, it's not a question of opting out of being able to receive NHS care - it's only about whether the records of that care are available to anyone with an NHS login who wants to know about your medical history.  Nothing can take away your entitlement to care on the National Health Service, and the NHS has well-established procedures for dealing with people with missing case records.  In addition to which, your records could still be kept by your GP (and I believe on a local information spine), and just not uploaded to the national spine.  They could still be passed from GP to GP in the event of you moving.  It's not about not having records at all, it's just about who can access them.
 
Also, if you look at the campaign, there are two other major points to look at - the fact that demographic details are going to be available (unless the police have asked that they be removed) and that sensitive data (abortions, overdoses etc.) will also be uploaded.

Both the RCGP and the BMA's ethics committees voted that the system should be opt-in rather than opt-out: that patients should explicitly have to agree to have their summary details uploaded to the information spine, so this campaign is not just some tinfoil hat-wearing crackpot scaremongering. 
 
Personally, I would opt in.  I would have some reservations about the nature of the data collected and I'm really pissed off at the fact that case notes from formerly confidential services like sexual health clinics will now appear your main record (surely this will discourage those people who need GUM clinics to be anonymous from accessing them, and lead to a rise in risky sexual behaviour).  Speaking as someone who has experienced an instance of discrimination on the grounds of sexuality in the NHS, I would worry that moral judgement on the part of medical staff might make it more difficult to access treatment for those being judged.  In the case I mention, what should have been a fifteen minute doctor's appointment for a smear test turned into eight hours of running around London trying to find a GUM clinic which was open that day, all because my doctor decided that it was "inappropriate" for me to have a smear test at the GP surgery after the routine sexual health questions flagged up the fact that I was gay.  She'd been warming the speculum up until that point, so I assume that she'd have been happy to do it for a straight woman.  This was in 2001 in central London.  Apologies for too much information, but it's an illustration of the fact that service provision is not always equal and that sometimes medical professionals let their own prejudices inform their practice.
 
For the vast majority of us, this is going to be a huge improvement on the previous system and lead to more linked-up healthcare.  But people need to know what information is going to be available, and to whom.
 
U

[Claire B]

Out of Hours Services
I would work really hard with whoever/whatever it took, to enable/persuade out of hours services to prescribe methadone or subutex. As a Pharmacist I have very often been on the phone , on a Saturday,to an out of hours  doctor pleading for a script for someone who picks up without fail, only to have had a child/relative admitted to hospital on the Friday, and missed the weekend script... no instalment stamp on(some areas do not use this).. or some scripts still start on a Sat, yes they do! and it has been incorrectly written. I even had one script that came to  me on a Sat that required a Sun pick up, and we were not open, and the correct wording was not on to pick up on the day before Chemist closed days. we keep records to say when they have picked up, that the person is regular,what dose they are on... and I see the person every day, I even had the incorrectly worded  script in front of me... but I am apparently not to be trusted. What am I to do?
If this system gives doctors the confidence(which I obviously havent been able to do!) to care for  people then bring it on!
(but I take on board the possibility of discrimination)

[Maddy]

Although I don't have massive issues with responsible healthcare staff viewing my records, I don't care about my past in many ways, I refuse to feel ashamed about anything that I have done, ( I worry about old friends of mine that suspect that something has been going on and may be bored on a nursing nightshift..we all know that confidentiality isn't what it should be) but I do have worries about part of the link that states that central government bureaucrats have access as well. How long will it be until the DWP can validate your claim for Income Support by looking you up? Maybe this would speed up your claim but if ever a service makes moral judgments in my opinions it's the DWP....."so you CLAIM to be drug free then do you"....

My concern is not how it will work, there are many benefits, if it ever get going without an enormous amount of glitches, but how it could be misused. I'm going to think very carefully about my opting-options!

Maddy x

[mcdermott]

Claire B makes a brilliant point, and I think that this is something that we, as an organization, should be working on. I've certainly fallen foul of this situation myself in the past, it's one of the issues that made me an activist, and it's something that I'll be agitating for in the future.

[mikey]

The NHS is proven to be totally unable to implement any computer system within 15 years of when it should go live and even then there is no possibilty that it will work properly. So its all theoretical anyway.

[Jim]

you make a very fair and valid point Mikey

[mcdermott]

I was talking to a Doctor who has taken over the notorious Dr. Shipman's practice last week, and he's been involved with this new system. He also works as a specialist GP prescriber, and he tells me that the system that he uses gives patients access to all of their case notes on-line. He also suggested -- without any prompting from me -- that such a system would be very useful in cases where people have lost their script, need emergency treatment, etc. etc. for enabling rapid and reliable replacements.

According to him, it will be a tiered system where access is on a need-to-know basis (though at which level someone's drug treatment is revealed is currently undetermined), but the patient can override that if they decide to share their details with a family member, health care worker, etc.

[simon]

Yes the access has to be anabled by the GP and I understand from our practice manager that on the training they had they cited a chap in america (On holiday)who had some complex heart problem, couldn't explain what it was. The patient was able to let the american surgeon look at his records and see what operations/treatments he already had.