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All about what self care means

Do you want Real-time Digital Medicine?

Imagine you feel unwell and then collapse in the chair whilst you are on the train with some kind of brief fit. You don't have time to call your partner and then become unconscious. You change quickly colour as it drains from your face and you have this horrible grey look about you as though there is impending doom. What would happen next? Another passenger on the train raises the alarm with the train guard who puts out a call wondering if there are any trained health professionals who may be able to help.


Fortunately there is a doctor on the train who answers the call and comes to see what help he can provide. By the time he arrives you seem to be coming round, your colour is coming back but you still seem "groggy". He asks what is wrong with you and whether anybody knows anything about you. "No" comes a quick reply. Somebody says that prior to the collapse you were trying to get into your briefcase but didn't manage to. The briefcase is locked so nobody can access it. Anyway that's personal and strangers shouldn't be going through a briefcase (or your wallet for that matter) - all sorts of accusations could be made afterwards by you or others.


The doctor asks the passengers to check if you have a phone on your person. he wants to check if there is a contact in your phone called "ICE" which stands for "In Case of Emergency". There isn't. You still look unwell. The guard is asking what we should do and whether we should stop the high speed train from Manchester to London at the next train station for paramedics.


"Yes of course". The doctor still doesn't know what the problem is. Do you suffer with epilepsy and have just had a fit in which case we need to get you out of the chair and onto the floor away from any sharp objects that may harm you OR have you suffered with a hypoglycaemic attack and need urgent sugar in your blood stream to get your sugar levels up. Putting sugar or something sweet like jam may save your life if it is the latter but actually could make things worse if you are fitting. What does he do? Have you got a bracelet or a necklace indicating that you suffer with a life threatening illness? No! Decisions! Decisions! Decisions! The doctor asks for a chocolate bar, some jam or orange juice and sugar. He asks for help to move you onto the floor away from the chairs where there is more room.


As the train pulls in to the next train station, you gradually come round and are able to say that you suffer with insulin dependent diabetes mellitus, had a hypoglycaemic attack and that you were trying to get into your briefcase to get a glucagon injection to help bring your blood sugars up but "ran out of time".


The train stops, the paramedics take you away for further assessment and treatment and the doctor goes back to sit down in the chair wondering why that happened. The staff on the train are thankful for the help provided and hope we don't have any further delays. Another patient on the train comments "fancy sitting on a train and not having anything on your person to tell others what you suffer with". The doctor thinks "what could we as a society have done better to help you so that things ran a bit more smoothly"


The patient could have a contact in his phone called "ICE" which anybody could call if he is found collapsed and unable to speak. That would ring to his next of kin who could then determine whether further life saving information needs to given to the other person, doctors, nurses, paramedics, fire crews and police. The general public needs to know about this too because they are more likely to get to somebody before any of the others and seconds can often count!


The patient should have access to his GP electronic health record so that he can understand his health better, why he is suffering with hypoglycaemic attacks and what to do to try to prevent them as much as possible.


The patient MAY CHOOSE to give the passwords to his next of kin for access to his GP electronic health record. This is a personal choice and not everybody would want to do this. But clearly if he had done this then perhaps the next of kin could check in the records or allow the doctor to access the patient's records to find out what treatment he is on, who is treatig him, what has been happening. This would require either the next of kin or the doctor on the train to have access to the internet. Whilst this is not always possible, many train journeys including this one do have the internet now and hence vital life-saving information could be made available even if a doctor was not on board and people are waiting for the train to stop to let paramedics on board. Once the patient is better, he could always change the passwords for access to his records so that nobody can access his records inappropriately. And of couse he can ask the practice when his records have been accessed (even though the system does not record who has accessed it). This is a choice that ONLY the patient can make. Nobody else. Period.


Some areas have now implemented the Summary Care Record which is accessible via the NHS Smart Card by clinicians that have a legitimate relationship with the patient to do so. This is still being rolled out slowly as the NHS learns how best to do this. It means that doctors with a smart card and appropriate smart card reader can access summary information about the patient including what conditions they suffer with, what medicatin they are on, what allergies and adverse events they have. Soon there will be discharge summaries from hospitals and other information avaiable on there too. The doctor in this case would not have been able to access the Summary Care Record on the moving train but the paramedics may be abe to in the future. As they are blue lighting to the scene, the information about the patient could be beamed into the ambulance. They could be getting ready with the glucagon as well as the blood sugar machine so that they can instantly make the diagnosis (of low blood sugar) and instigate emergency treatment. It's at times like this when the Sumary Care Record could prove invaluable. Hopefully this will be available in all parts of England by the end of 2010. This system does record who has accessed the records and when and whether there was a legitimate relationship with the patient or not. In an emergency when the patient is unable to give "permission to view", access may be granted but there is a warning for the person accessing the record that an unauthorised access is taking place and that this will trigger an alert for somebody else to be aware that the record has been opened.


Access to the Map of Medicine. The doctor may not be somebody who usually deals with diabetes and hence may not know the latest advice on how to deal with a hypoglycaemic attack. If he had easy access to the internet via his SmartPhone or from another passenger who has the internet, he could access the Map of Medicine pathway which gives advice on how to deal with a hypoglycaemic attack. As the patient came round, he could ask the patient what their e-mail address is and then e-mail a PDF of the pathway to him to help him understand his diabetes better and to share with his family too so that they understand it better. If they don't understand what diabetes is then this can help them to udnerstand it better. Perhaps they could then ensure that he eats regualrly and appropriately. Or perhaps they might help him to remember to go to his review appointments with the diabetes nurse or the doctor. Or perhaps see the pharmacist to advise about keepign glucose tablets or even how to self care better to help manage his diabetes better. He may have other gadgets that help him to remember his food, medication, exercises etc. Or maybe he might just say that the patient really does need to go back to his doctor and not continue to try to self manage when clearly he is putting his life at risk especially after the patient allows him to see his blood test results which show his blood sugars are all over the place and either very high or very low.


Diabetic with suspected hypoglycaemia Diabetic with suspected hypoglycaemia


The patient, his next of kin, the pharmacist, the nurse, the GP and the paramedic all helping the patient though real-time digital medicine.


This scenario was a real scenario that Dr Hannan experienced when he was travelling to London with a patient. The passenger who was unknown to him fortunately survived and he never got a chance to find out who he was but the outcome could so easily have been much worse. We now have the technology and the know-how to avert such potential disasters. Self care on the part of the patient is key to all this whilst the NHS modernises and further IT systems are deployed to help us deliver better care! We are all on the same side and by helping each other we can all benefit.


Real-time Digital Medicine!


Send an e-mail to htmcpatient@nhs.net if you would like access to your GP electronic health records too and ask the receptionist for your PIN numbers now!

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