OK, this is a rant!! After 19 years in limbo I was finally diagnosed with MS late last year. I never pushed for a diagnosis because my symptoms have, fortunately, been managable. But some new symptoms made me go back to my GP to see what was going on. After my diagnosis I was refered to my local neuro science department and after as they put it “falling thrugh the net” a few times, I finally got an appointment for the midle of April. Letter sent out, date, time, everything you need in an appointment letter, put it in my outlook calandar at work so I wouldn’t forget, job done. Then last week my wife called me to say the hospital had called, or a machine had called to confirm my appointment. But the thing is my wife only got the phone off my young daughter after she heard it say confirmation of a hospital appointment. My wife confirmed my appointment I assume by pressing the telephone keys, and answering the not very difficult security question of my date of birth. The thing is, only my wife knows, the kids don’t know, my mother who is regularly in the house when we are out doesn’t know, but you know what? I am pretty sure they all know my date of birth!! I am absoulutely livid abot this. I think my daughter, who jokingly asked her mother if I was dying, is ok, she is only 11 so her mind has probably moved on to something else. But what if it had been my very smart, tech savy university bound 19 year old son who had answered the call? You can bet your life he would have got to the part which mentioned Neuro science department. I have prepared a letter to send to the hospital next week. Is this a regular thing now with hospital appointments? Maybe they do it because they know people with MS sometimes forget things, which is certainly true in my case, but reminding me 10 or 11 days before my appointment is pointless, I can forget things in ten minutes never mind ten days!! Sorry there are no paragraphs to this post but the return key isn’t working. OK, rant over but I still have steam comming out of my ears.
First of all sorry to hear about your diagnosis, Im sorry this has caused you so much stress.
We also have the automated telphone confirmation service in our area (surrey). It was set up to reduce the amount of missed appointments, which apparantly cost the NHS millions every year. According to a letter that was sent to me If you dont wish to receive the service then ring the hospital and ask to speak to the appointments dept , tell them you are not happy to use this service. They should do this for you, especially if you explain it makes you worry about confidentiallity.
I gave the hospital my mobile number so there is less chance of the kids picking it up as there very young, although in a few years might be different!
Hope that helps
Hi Laura,Thanks for the information. I am sure the service works well for the hospitals who use it and I understand about the missed appointments costing a fourtune. But I would have liked the option to opt in or out of this, surely the system should be based on opting in. I didn’t mention in the post that last year when I was diagnosed I thought long and hard about not telling my wife, but given that she is a nurse practioner I thought she would be very pleased if I didn’t tell her, just as well I did.
I understand that if you were trying to keep the information to yourself it could cause a few issues. I was sent a letter explaining it all with my appointment letter, so i had a chance to opt out. Sorry you didn’t have the same chance.
For what it’s worth i told my oldest what was happening (or at least as much as he can handle right now) and now i don’t feel like everything has to hush hush all the time and it has taken a huge weight off my shoulders. The MS trust does some great publications about explaing MS to kids. Obviously everyone is different and we all have to do what works for us, I agree it’s just as well you told your wife as everyone needs support. Good luck and hope you get it all sorted out. x