You haven’t been ill enough so we assumed you were dead

According to this morning’s news too many of us in the UK are bothering GPs with minor ailments such as coughs and colds (BBC News – Too many visit GPs with minor ailments, campaigners say A report by the  “Self-Care Campaign” says common ailments account for nearly one fifth of GPs’ workload.

I was feeling rather pleased with myself for not having bothered my doctor for about 12-15 years but then remembered the slip that has just been returned by my GP surgery with my NHS summary Care Record opt-out form:

“Please find enclosed your ‘opt-out’ form which I am returning as I cannot find a current registration for you at our surgery, so assume this was sent to us in error.”

I had not bothered my GP and thus, it seemed, my GP was not bothered about me!

This is not the first major faux pas that the NHS has made regarding my medical records. When we moved to Caversham in 1982 I registered at the local surgery. My new NHS card arrived – in those days we had nice little buff cards with a coat of arms in the top left hand corner  – and I tucked it away in a file marked “Medical/NHS”. I should have checked it there and then because 8 months later when I needed to go to the doctor for some vaccinations I discovered a serious problem. The address on the card was correct but the name and NHS number belonged to someone else. I finally received a correct card from the local Family Practitioner Committee but in the meantime my records had been lost.

I should at this point explain to those of a younger generation that aeons ago doctors scribbled your symptoms,diagnosis and treatment in illegible handwriting onto cards. Computers were not even a twinkle in the Practice Manager’s eye.

Fast forward 28 years and my husband, as well as many of my friends, recently received letters from their GPs about the NHS Summary Care Record together with a form enabling you to opt out. Mine never arrived but the post is sometimes unreliable in this neck of the woods so I assumed it was “lost in the post”. Not to worry. I simply downloaded the form from the web site, filled it in and delivered it by hand to the surgery. Then it was returned.

So today I tried to find out what had happened to my records.

I must say that the surgery building and facilities have much improved since I last had to use them. They even have computers now. The receptionist tried to be helpful and tapped away at the keyboard searching by various criteria but each time she hit enter I could see her thinking “Computer says no”. There was no record of me at all on their system. Was I sure I had registered with them? Yes – and waved my NHS card with the doctor’s name and surgery on it as proof. Had I registered somewhere else as temporary resident? No. And so the questions went on. She gave up and went to refer to someone “in admin”. Had I actually seen a doctor at the surgery? Yes, about 12-15 years ago. It will be on my records…..but of course you don’t have my records any more! Off she went again.

It transpires that because I haven’t visited the surgery for so long my records may have been sent back “to base”

“Which is where?”

“Where the records are stored”

“Which is where?”

“Back at base”

“Which is …. oh forget it”

But they were confused that there wasn’t a single trace of me on “the system”. What now? They might possibly be able to track down my records “at base” but I have had to register with them from scratch. This was no simple one page form. I had to work may way through six pages of questions, most of which where not applicable and the rest impossible to fill in because I could not remember dates or even years of vaccinations and childhood illnesses. Don’t worry, I was told, we’ll find it on your records. BUT YOU DON’T HAVE MY RECORDS!!

I have filled in the forms to the best of my ability and await the results with interest. I confess that I find it worrying that I am a “non-person” as far as the NHS is concerned. What happens if I have an accident, am rushed to hospital and they try and contact my GP? I apparently don’t have one, nor do I have a medical history of any sort.I was hoping that other official and government bodies no longer knew of me but alas Inland Revenue and the VAT office remain firmly convinced of my existence.

During the search process, one of the staff made an interesting comment: “If you haven’t been ill enough to visit us in the last few years then we assume that you’ve moved away or died”. So forget about the “Self-Care Campaign”, make sure you pester your GP with every little ache, cough and blister. Otherwise you’re dead.

12 thoughts on “You haven’t been ill enough so we assumed you were dead”

  1. This would be funny if it wasn’t so tragic. Or tragic, if it wasn’t so funny, I’m not entirely sure which. I had something a little similar – I got a prescription a while back and noticed my date of birth was the 7th, not 1st. I think what happened was that someone wrote it down on an official form with too much flair. Anyway, I said to them that my birthday was wrong. Receptionist said ‘how do you know?’ Because it’s *my* birthday? She wanted me to get a birth certificate, give it to them, so that they could send it off, to this mythical ‘base’. I said that since I couldn’t trust them with the date, I certainly couldn’t trust them with the certificate! Eventually they took a copy of my driving licence, which seemed to sort it.

    So if we both have data horror stories about the NHS, how many other people do?

  2. As I mentioned on twitter, I also had an exasperating experience when changing dentists (see for my blog about that). The sheer misunderstanding of good information management principles in crucial mainstream public services such as health is frightening. I am guessing that is why you wanted the opt-out form in the first place, or do you have other reasons for opting out (if that’s not a personal question!)?

  3. A year or so after moving to my present address I got a letter from my GP telling me that I was overdue for a smear test. It was quite true – I hadn’t actually ever had one. The letter had my name right but addressed me as Ms rather than Mr. I guess it was just a tick in the wrong box. I phoned to check but they said I didn’t need to bother.

  4. Hi Phil,

    Lots of other horror stories out there judging by Twitter and Facebook responses to my posting, as well as the three comments so far in here. What really got to me was that they kept repeating the same questions over and over again and the manner in which they asked them – a bit like your “How do you know that’s your birthday”. I kept getting “But are you sure you really did register here?”. “Yes – the name of your surgery and the doctor are on this card!”.

    What really concerns me is that there may no longer be any record of the severe allergic reactions I have to some vaccines. When I raised this with the staff on the desk they told me not to worry – it will all be in my notes, which they don’t have and don’t know for certain if they still exist!

  5. Hi Fiona,

    I read your blog posting and must confess that I have never thought about dental records, but there could be serious reactions to anaesthetics for example that out to be transferred from one practice to another.

    You are right about the poor records management history of the NHS being a factor in my wanting to opt out. But I also sometimes work with programmers who have experience of trying to sort out various messes on NHS systems. They say it is a complete shambles and security so pathetic they might just as well put it all on an open web site.

  6. Hi Frank,

    “So Mrs Norman the operation was obviously a success”

    or perhaps that should be “So Mr Norman, the operation was a failure”

    It really does not inspire confidence.


  7. This is all quite worrying! To Fiona’s point “The sheer misunderstanding of good information management principles in crucial mainstream public services such as health is frightening” – I think it’s probably a mix of specific misunderstandings and culture that doesn’t give importance to such things. In this respect, it’s probably symptomatic of large organisations in general. It doesn’t excuse it at all, but to me, it’s re-emphasising that influencing the culture of my organisation with regards to information management should be a big part of my job. With competition for resources so strong, organisations prefer to take the risk of putting out a possible fire (metaphorically) instead of installing smoke alarms to help prevent them.

  8. Hi Phillip,

    I am still waiting to hear if they have found my records and re-registered me at the practice. So while I wait I asked my husband, who went to the surgery about two months ago to get a general check up that was needed for a possible trip to Antarctica, about his status at the surgery. He is on the computer – just. Only name and address, a totally new NHS number, and the doctor commented that he obviously had not visited them before because there were no notes on the system (computer says no!). His previous visit had been in 1989 and mine was about 1995 so why was there a record for him, even if it was only contact details, but not me:-( Human error is the obvious conclusion. But we are now thinking why wasn’t any previous medical history available to the doctor either on the computer or on the old buff coloured cards? My husband or myself could be given a treatment or a vaccination to which, in the past, we have suffered an adverse reaction and there would no record of it available to the doctor. The consequences for them would be fire-fighting on a serious scale i.e. major legal proceedings – if we had survived of course!

    In reality, both of us are well aware of past allergic and adverse reactions and would make them known very vociferously to the doctor. But the fact remains that in transferring records to the computer system it seems that they are not including vital information that could mean life or death to the patient.

    I originally found the incident highly amusing. After receiving so many comments and horror stories from others, and thinking through the potential harm that could befall my loved ones and myself I am now angry at the total shambles of the system and incompetence of those who have devised and implemented this system.

  9. Hi Karen,

    I work in the healthcare sector – not the NHS, but in the private sector. Records Management practices are generally a key component of some of our regulatory inspections. We can be shut down and/or fined for not getting it right. I’ll probably open up a huge argument here, but I suppose you can’t shut down a GP surgery for poor records management – if you could, it might be a different story.

  10. Hi Phillip,

    Judging from the public and private comments I’ve had from people on this. Shutting down GP surgeries for poor records management would result in there being hardly any surgeries left! But the threat would concentrate their minds wonderfully.

  11. A bit late coming in on this one. Have you thought of the serious consequences of your not being able to say, vociferously or otherwise, “hold the pencilin – it’ll kill me”. A medalert bracelet is the answer even if you DO have proper records “on the system”.

  12. Hi Hazel, the “big one” for me would be “hold the typhoid vaccination”.

    I’m still waiting to hear from the surgery. No information on whether or not I am now registered there and no update on the location of my records.

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