Would you google?

Even the medics “google it” ?

Tish
Yes, but they're medically trained so they're coming at it from a different angle. One of my daughters (and it comes from a place of love but she tends to catastrophise) will turn me having toothache into jaw pain from a heart attack and will be ready to call an ambulance. It's far too easy to be scared witless unneccessarily.
My new GP googled my eye condition while I was in the surgery but because he said he'd never encountered it in the flesh only as a passing comment from a senior doctor when he was training.

We have had 3 letters go astray, first was a change of appointment which we attended only to find it had been cancelled from that date, 2nd was an appointment for me, only knew when had a letter saying they were disappointed I didn't bother to attend, and 3rd a scan for my husband, told they wouldn't be sending any more appointments. Not sure whether the fault is with the hospital or the postal service because they have the correct address.
Yes, I always google, I like to be well informed.

That sounds good, kircubbin.

I don’t understand all this aversion to Googling. It’s only the same as reading an NHS leaflet for heaven’s sake! why the drama?

Now, when our GP refers us to a hospital dept, the hospital sends a letter asking the patient to phone to make an appointment. After the call, they send a letter confirming the appointment. I assume that if patients negotiate an appointment which best suits them, there is less chance of missed appointments. My dentist and optician now send text reminders.

vickymeldrew the aversion to googling is that you have no guarantee that the information is accurate. You need to stick to reputable sites like the NHS ones or, if you know what your illness is then use specific sites for that illness, Bloodwise for instance if you have a blood cancer. There is a lot of information bandied around on the internet which is either years out of date or just plain wrong, and that's before you start on the anecdotal stuff about "natural" cures.

Just yesterday, my DGS (aged 13 ) had an outpatient appointment. His GP referred him because, apparently, the problem might be a symptom of a particular group of medical conditions, which he did not name. Needless to say, DD and I googled, and we were somewhat concerned by what we read. However, much to our relief, the specialist didn't think it was anything to be concerned about.

Kircubbin2000 If I were you, I would be absolutely furious. They should have given you another priority imminent appointment, having sent several letters to the wrong address. There’s the issue there of the data protection act, because whoever did receive those letters, should at no cost to themselves, have had those letters redirected to the addressee. I know that every hospital letter always have their address on the back of the letter. If the hospital had received those redirected letters it would have alerted them to the fact that they were being sent to the wrong address. So, as the letters weren’t redirected, whoever lives at that address could very well have opened them, and seen that you were seeing X department, which could well have been of a delicate nature. So this person, of whom you know nothing about, now knows your address, date of birth, hospital number, your NHS number, an address that could have been confused with yours, for instance something simple like ‘Drive’, instead of ‘Street’. Now they know that you’re also seeing X consultant, in W department. Also, depending on which department you’ve been referred to, that your problem is serious.. They have enough information to commit identity theft. I would be extremely peeved to say the least, and I’d most definitely point that out to Patient & Liason Services. You should expect an apology at the very least. I would also include in my letter any losses which you have incurred as a result of inadvertently missing appointments. In this letter, I would definitely cover the points that I’ve made in paragraph 3 and any other points that come to mind, as you’re reading this post or anyone else’s. I’ve also given you tips on how to get the most of your hospital appointment because I find it really useful.

I would also write a strongly worded letter personally addressed to the CEO of the hospital. Use the letter that you wrote before, but just change any words applicable.

I’m presuming that because this situation has been going on for quite a while, that you’re feeling very concerned and in pain. You, understandably, may not be sleeping properly for worry/anxiety &/or due to your symptoms? Maybe you’re having to continue to experience your other symptoms too? As a direct result you feel that you cannot wait any longer for some idea of a diagnosis (word your letter strong enough with these points, and you may get a refund for the private appointment). Personally, I would make all of this extremely clear (written down on my list which I’ll explain next, so I don’t forget any relevant points) when I see the consultant tomorrow and tell them how this fiasco has actually affected you. This should then be recorded in your notes and you will be able to use it, for whichever action you wish to take in the future. Whatever you’re diagnosed with and if the delay has affected the outcome, it may very well affect your future actions, understandably. A word of warning though, I would make it clear at the outset that you have a brief issue to mention, which you explain in a crystal clear fashion, that you want to make it concise and brief, and that you’re very keen to actually get onto the appointment and not waste any further time. So, *be sharp, be brief and be concise*; your list will enable you to do this. You’ll feel so much better for making your list too.

Personally, I definitely would google, and I always have done. It’s definitely paid off big time. It’s quite possibly saved my life. At least it gives me more up to date information, especially about drugs for serious chronic conditions. For me, it was definitely the right thing to do. But I am careful at which websites that I look at, and I do take some of it with a large pinch of salt. It enables me to ask the multiple questions that I have. Sometimes Google also actually prompts me to ask more questions too. Be it about the medication, the diagnosis, any operations I need, conflicting advice and the general outlook itself. I prefer to be really well educated about the medical problems that I have.

I would strongly recommend that whenever you go to the hospital (or wherever), I always make a list of problems (on my IPad as it makes me look organised) that I’m experiencing, no matter how mundane they might seem to you. It is crucial to enable the consultant to make a diagnosis. A list is absolutely imperative I feel, in my experience. I’ve had far, far more than my fair share of consultant appointments too. So I would start to write a list of symptoms usually a week before, because I find that I add to it as that week goes by. My post might help you there though, to think of questions. Your list will really enables you to make the absolute maximum of the time allotted to your appointment. To just sit, and um and arh loses you really precious time! enabling the consultant to wrap it up. Plus, whenever you’re under that kind of pressure your mind does have a tendency to go blank. I know! So the other part of my list would be questions galore. I’m sure you have many, and during the appointment, more will come to your mind. However embarrassing you feel the question is, it’s never anything that they haven’t heard of before.

I make my lists every time I see any of my consultants too, even those I’ve seen before. I always look at previous lists too, to see if there’s anything that I need to comment upon, such as whether a medication is working, such as side effects, or if I mentioned a problem before and it hasn’t been resolved, whether I’ve had questions that I haven’t quite understood before, etc.

To be totally truthful, the consultants definitely prefer my approach 100%, and every consultant has actually expressed gratitude because of my organisation and they really respect me for it. It does make the consultation very intense as you end up talking a lot faster and you’re both really focused, which is precisely what you want from your consultant. You want 100% of his concentration!You want to maximise your allotted time. I actually ask to see the X-ray, or the MRI, or the test results from the laboratory. I even ask them what my results are whenever they take my blood pressure, temperature, my oxygen saturation levels, my pulse, my urine test, absolutely everything. If nothing else, it means that I have a sense of how healthy my body is. They might not worry if my blood pressure is a bit on the high side and they haven’t commented, but I damn well want to know because it’s my body. It means that I can take the relevant action, as soon as, to try to reduce it in this case. They don’t give a toss, but I do.

Very interestingly, several times when I’ve asked to look at MRI results, and I’ve been shown the write up by the clinicians, I’ve actually prompted the consultant that I actually want to see the actual MRI pictures themselves, we’ve both picked up discrepancies between the actual scan and the report. My consultant has then told me that they are going to “have a chat” with the authors of those results!

I hope this helps? Good luck today!

Bear in mind that PALS is paid for by the local NHS trust. Often promises such as “this won’t happen again” are made but not often acted upon.

I did have one young PALS employee call me from a call box in his lunch hour to advise me as he felt strongly that I was being given misleading advice.

There is a real problem in Leeds where they have half a dozen roads adjoining Smith Lane, Smith Avenue, Smith Road etc. Fortunately when her breast screening came back with a potential problem the inhabitants dropped it round to her. Some people wouldn’t bother.

Last post for now. Dress as if for a business appointment but be aware clothing might have to be removed. You will be taken more seriously. Carry a file so the doctors know that you keep records. I also have a brief diary version as a potted medical history that I print off and give to the doctor. Some make notes from it and others put it on my file. If you are in a lot of pain and have had a long wait it’s easy to get confused.

Google is my friend. I like to be informed.