Wanted Please - Harrogate / York / Leeds area

[patsylabrador]

Recently got the info pack about this. I'm not quite happy that it will be efficient or secure, plus I have no confidence in any scheme brought about by the present government. I'm thinking I might opt out, but I'm not sure. I would be interested to hear the views of anyone else.

[Space Chick]

I work for the NHS in Wales, where we do things slightly differently but I am aware of the concepts in England and Wales. Is this about GP out of hours or is to for you to see your own information, as this will affect how I respond

[quickcluck]

I also work for the NHS. I have NOT opted out. It will enable Key Health Care professionals to access your records when you are in need of hospital attention anyway in the the country. This could provide essential information about your medical needs especially if you are unable to give them the information yourself.

 

It's very frustrating trying to treat patients who are unable to give a clears history or remember which medications they are taking on a daily basis.

[patsylabrador]

Is this about GP out of hours or is to for you to see your own information, as this will affect how I respond

Your health record will be kept online so that people that need it have quick access to your health records. On the face of it, it seems like an excellent idea but there have been scare stories about wrong details being stored and reports questioning the security. My main concern is that they say in the leaflet that over the years more bits of personal information will be added - that worries me. Lots of my family are diabetic, how can I be confident that information like that won't eventually go the way of Insurance companies or recruiters?

We've had so many examples over the last few years of private details, held on laptops going missing, that I have doubts.

In theory it's a brilliant idea and as Quickcluck states, it should improve service, but that's why I asked the question because I just can't decide whether I trust it.

[Space Chick]

OK, its the GP and other health provider one. In my opinion, I think everyone should opt in, it makes sense.

 

There was a high profile case a few years back, where a woman had seen 7 Dr's in out of hours and hospital before she died in the night on the bank holiday Monday. She was a young woman in her 40's. The cause was linked to a condition she had several years previously that her and her family did not mention to these Dr's. If they had seen her summary record they would have been able to treat her appropriately.

 

Also, when there is an emergency, you really don't know how you will react. My friend recently had to take her little one to out of hours and was in such a panic her mind went blank on a drug that he had previously had a negative reaction to. Again, this would be solved by a summary record.

 

Personally, I would NEVER opt out, it is as secure as it possibly can be, and even if there were minor risks attached (which there shouldn't be), I would take my chances. There are such strict Information Governance guidelines that the NHS has to adhere to, that there is NO WAY they would be able to sell the information on. I would rather clinicians have all the information they have to treat me, wherever they need to treat me.

 

Hope this helps

[sadietoo]

As I understand it this new system should actually be more secure since apparently you have to log on and give a reason why you are accessing records. I have heard of one nhs employee being sacked already for looking at someone's details inappropriately. All my friends who are health professionals applaud the system and say you should opt in and so although I too hate the idea of my records being out there online we are all staying in the scheme.

 

I have no confidence in any scheme brought about by the present government.

 

I very much doubt any different incoming government would change the system.... to be fair, it's not intended for the government's benefit it's for the patient's.

[Snowy]

I've worked on both sides - as a ward nurse trying to treat patients with no information (young girl on holiday in our area, no records, brought in unconscious, only the personal info given to us by her friends) where this would have saved hours of unecessary and invasive tests; to my current situation trying to obtain health information from an individuals GP for employment reasons. It is not easy to get that information, and the individual has the option to block it at any stage of the process. The same applies to insurers - they don't always offer you the option to see your reports before they are released by the GP, but they should, and you have a right to see them. So in theory it is a good thing. In practice, there is always the chance that information will be lost or inadvertantly divulged, but I think the benefits outweigh the risks.

[patsylabrador]

I have to say my swingometer is edging towards remaining opted in. Thank you for your views, it has been good for me.

[Lesley]

We've received these as well and I must admit I was a bit worried about the safety of any information held, but with all the frequent visits to A&E that my granddaughter has had over the last 3 years, the most frustrating thing was the lack of joined up care. Some weeks she has been into Warwick A&E up to three times and nothing is held on computer - each time we've had to give her history to a doctor with a blank sheet on a clipboard

 

I think that on the whole it will be beneficial.......

[shoura]

i work for the NHS and it is extremely frustrating when patients are unable to give a coherent account of their medical history and medicatiosn etc, not to mention dangerous for the patients!!! Please opt in, it's for your own safety!!

[hilda-and-evadne]

I would be interested to hear the views of anyone else.

 

I have opted out because I work in IT and know how this can, will, does and has already gone wrong.

[hilda-and-evadne]

i work for the NHS and it is extremely frustrating when patients are unable to give a coherent account of their medical history and medicatiosn etc, not to mention dangerous for the patients!!! Please opt in, it's for your own safety!!

 

You - and not just you - talk as if the NHS never makes a mistake. Being able to give a coherent account etc etc does not even now protect you from the NHS (especially in A&E) being very weak at "cross-disciplinary" assessment; I have recent experience of this at a big London teaching hospital. Had I gone along with A&E's course of treatment (I was attacked by a strange dog in a local park), I would now very likely be unable to work - and my own GP agrees.

[hilda-and-evadne]

I think the benefits outweigh the risks.

 

Thing is: all and sundry can see your summary care records - they are not access-restricted on a strict "need to know" basis. Information is extremely valuable: some years ago, in a neighbouring PCT, all the records of people suffering from AIDS in the south-east were stolen, and why? Because, perhaps, that sort of data is useful to people who sell insurance.

 

Why does it seem that so many people will not begin to be concerned about their privacy until their privacy has all gone?

[hilda-and-evadne]

to be fair, it's not intended for the government's benefit it's for the patient's.

 

Why do you believe that?

[Snowy]

I think the benefits outweigh the risks.

 

Thing is: all and sundry can see your summary care records - they are not access-restricted on a strict "need to know" basis. Information is extremely valuable: some years ago, in a neighbouring PCT, all the records of people suffering from AIDS in the south-east were stolen, and why? Because, perhaps, that sort of data is useful to people who sell insurance.

 

Why does it seem that so many people will not begin to be concerned about their privacy until their privacy has all gone?

I do agree with you! I have major worries about the security of information - no matter how good the systems (and they are not foolproof) there will always be someone who will abuse it either for malice or personal gain. And sadly mistakes are always made in health care, either computer generated or through practitioner incompetance. But I still think that, for a medical practitioner to have access to a patients full medical history will be, on the whole, beneficial.

[Happy chickens!]

I think it's a great idea in theory, but clearly relies a lot on the system being reliable, ie information inputted correctly (my fave expression from way back, put garbage in you get garbage out!) and in a secure format. That said, I think it is the way forward, so I'm opting in. My elderly parents have many health problems, and just an accurate list of medications can take forever when they go to hospital.

 

With regard to insurance, it's so easy to find yourself un-insured when you claim because you forgot to put something down that didn't seem relevant, that I would rather they were sent the complete medical record and then you know you're covered!

[Space Chick]

All accesses to systems like this are logged automatically so they can be audited, so any access would be able to be traced. These systems are on a consent basis, so you would need to consent at the time for your record to be accessed (unless you were incapable in an emergency eg. unconcious).

 

 

Thing is: all and sundry can see your summary care records - they are not access-restricted on a strict "need to know" basis.

 

That is inaccurate, these systems ARE restricted access, there are strict processes in place for user registration based on job need.

[hilda-and-evadne]

you would need to consent at the time for your record to be accessed ... there are strict processes in place for user registration based on job need.

 

Well, I have seen with my own eyes and own records that these strict processes don't seem to work, and your consent is being sought in advance - that's what this Summary Care Records stay-in/opt-out exercise is about - so you won't be asked "at the time".

[hilda-and-evadne]

My elderly parents have many health problems, and just an accurate list of medications can take forever when they go to hospital.

 

I have opted my mother out, acting on her behalf in what I believe to be her best interests. She is in a nursing home and has no memory any more, does not understand conversation, and probably does not have many years left to live, but there are many many things in her records that she would not want Uncle Tom Cobbley and all reading about. So I made the decision to opt her out because that is what she would have done, were she still able to do anything about it.

[Space Chick]

you would need to consent at the time for your record to be accessed ... there are strict processes in place for user registration based on job need.

 

Well, I have seen with my own eyes and own records that these strict processes don't seem to work, and your consent is being sought in advance - that's what this Summary Care Records stay-in/opt-out exercise is about - so you won't be asked "at the time".

 

Your consent is being sought in advance to extract the data from your GP practice, your consent will be sought again when it is accessed by other health professionals.

 

That is if the system is the same in England as it is in Wales. I have previously worked on project implementation of the Welsh system, and so I know 100% that this is the case in Wales, and would have thought the same governance model would need to be in place for England.

[Tiggy]

I work in GP land and cannot make my mind up about this one, it can be very frustrating & possibly dangerous when new patients join or are temporary when we have no idea what their allergies are or medical history is. Often people are taking lots of drugs & cannot remember doses or even what drugs they are on. So I can see the advantage of a central record system, However, I'm not sure I would want my whole medical history available to anyone who could log in to the system, I'll have to take a closer look and see if we are able to only allow what we want on view, people may have things in their past that they are embarrassed about or ashamed of that they do not want on their ' public record' I will have to take a closer look before I decide what I want to do. This is where hand held records may be a btter idea, when you carry a card with a pin number for the health proffessional to have access to your relevent details such as allergies & meds etc

[hilda-and-evadne]

I work in GP land and cannot make my mind up about this one, it can be very frustrating & possibly dangerous when new patients join or are temporary when we have no idea what their allergies are or medical history is. .. This is where hand held records may be a btter idea, when you carry a card with a pin number for the health proffessional to have access to your relevent details such as allergies & meds etc

 

Tiggy, the documentation for this

 

http://www.connectingforhealth.nhs.uk/systemsandservices/scr/staff/impguidpm/scrgolive/adastra

 

makes it clear that you will be given a card that is programmed to over-ride the patient's dissent and even enable you to see the full health records of people not just the summary care records. But the NHS is not telling people this.

 

In case of interest, I was one of two people interviewed on the Jeremy Vine show (BBC Radio 2) today about the NHS Summary Care records - I spoke from an IT/data security perspective (eg I said that smart cards, web and mobile technology are being used for this, and we all know how secure they are), and the other speaker was a GP - will be on-line sometime later today

 

http://www.bbc.co.uk/radio2/shows/jeremy-vine/

 

The item on the Summary Care Records was just after 12:30.

 

The programme makers got my name from a comment I put on the Daily Telegraph web site a short time back, on an article about the Summary Care Records. The software "solution" I referred to - how this is being "delivered" - is Integrated Adastra. Everyone needs to read up on this. The central NHS database is A Very Bad Idea, in my view.

[Tiggy]

thanks H&E I will have a look at that -

[chickenNutter]

I like to know as many of the facts as possible before I decide and researched quite a lot of views both in and out of the medical profession, before I decided that I wanted to opt out, as it appears that many GPs do not agree with this for a wide variety of reasons. I needn't have bothered filling in the opt out form as when I took it our practice they told me that the practice itself was opting out and did not support the initiative.

 

When my own doctor thinks it is a bad idea, that is enough for me. My medical records are confidential between my doctor and myself. The NHS sometimes passes on patient lists/details to drug companies etc, a friend of my sister's was approached by a drug company for a drug trial after having her chronic condition details passed on without her consent. Computerised data is not and never will be secure, as there is a human element in the system. There will always be human error.

 

Opt out now while you can. Once you are on the system, you cannot opt out again, you are in for good. (They don't tell youthat in the info leaflets either).