I had not been feeling good for a couple of weeks, i.e. much tireder than usual, slurry speech, stumbling and short sharp headaches. I had already had 2 blood tests which showed low potassium so I was told to drop one of my BP tablets and get rechecked in 2 weeks. I was due to have my INR check at the doctors and the health assistant commented on my jerky speech. I explained how I had been feeling and asked if I could possibly see a doctor. I was told I would have to make an appointment. My GP surgery operates a call back system so on when I got home I phoned and asked for a GP to call. I was told that they were taking emergency calls only, the call taker didn’t even ask what was wrong, even though she could clearly hear the problem with my speech. I was told I would have to call again the next day. By this time my hubby was not only angry but really concerned because I couldn’t get my words out properly.
I had a same experience earlier in the year but I am terrified of hospitals so it took a week before I saw my GP who sent me straight to hospital with a suspected TIA. Because I had left it so long the MRA couldn’t pick up any evidence of a bleed but I was warned that, should it happen again, I should call 999.
My husband made me call 111 for advice and for them to hear the struggle I was having. I was put on to a health care nurse called Christine who was furious that I had not been able to talk to a GP so she put me on hold while she called him. When she came back she told me my GP was coming as well as an ambulance. She was so lovely and caring. As soon as I hung up my phone rang and it was the doctor saying it was no good him coming as he actually couldn’t do anything so I was to wait for an ambulance. 2 hours later I called 111 because no ambulance had come. When they checked they told me I was supposed to have had a category 2 ambulance which should have arrived within 18 minutes but, for some reason it had been cancelled!
I hung up and the phone rang again. It was Christine calling to check how I was doing and promising me the ambulance was on it’s way.
The ambulance arrived about 10 minutes later but during all this time my speech was returning to normal. They went through the usual checks like squeezing their hands, pushing my legs against them, etc. I told them I had a suspected TIA earlier in the year but it only affected my speech and balance. The two ambulance men didn’t seem to want to hear what I was trying to explain and kept cutting me off.
I was taken to hospital and breathed a sigh of relief that there was only one ambulance outside. We were met at the entrance to A &E by a doctor and when the ambulance man told him my history but that my speech had returned I was amazed to be told to sit in the waiting room to be triaged. What happened about the F.A.S.T. rule?
There were 4 people in the waiting room which included 2 drunks, one with a scratched face and another with a black eye who was indignantly stating he wanted more than f*****g paracetamol!
I sat there for an hour while the waiting room filled up and watching everyone else go before me. While sitting in the waiting room, if someone had given me a blanket, I would have curled up and gone to sleep.
After yet another person had gone in, I had had enough. I wanted to go home. I tried to find a member of staff but couldn’t find a soul so I left, came home and went straight to bed. Half an hour after I got home the hospital phoned to see where I was. I was really peed off after the catalogue of events and told them they were too late, the episode was over and I had received no help at all. All he said was “okay” which made my blood boil even more. We decided that if I became unwell that we call 999 to see if we got any help.
I know I will be jumped on with people saying I should have stayed but nobody was taking me seriously. I hate, hate, hate hospitals so I wouldn’t have been there if I didn’t know my body was not acting normally.
It seemed because my grip and leg strength was normal, that the ambulance men didn’t consider I had a TIA. Whatever happens affects my speech not my limbs or my face! When I told them I was on warfarin they said it was unlikely I had had one but when I told them about my PV (which they hadn’t heard of) they went quiet when I said sufferers were at a higher risk of heart attack/stroke.
I feel really let down by the NHS now. I am going to see my Haemo. Consultant soon so I will have to tell her what’s been happening. Hopefully she will take me seriously.
Sorry for the long post.
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jillydabrat
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So sorry to hear about your awful experiences. I tried to post a reply but it then seemed to disappear . If it turns up on your message board please forgive me for duplication.
What I basically said in my first reply was could you possibly print out what you have written here so that when you see your Haematologist you can let her read it then discuss what happened and also a plan if it happens again . This may reduce the stress of you having to verbalize it all if she can just read it . Personally I would phone 999 if ( and I hope it doesnt) happens again then the health care professionals can see and examine you whilst you have these horrible and frightening symptoms . I really hope your Haematologist is as sympathetic, approachable and kind as mine is which really makes a difference. It may also be worth making an apt with your GP to voice your concerns and again agree a plan.
Good idea Dianne. I have taken your advice and printed everything off that happened so I don't forget what happened when I see my Haemo. Consultant. Thanks for the advice x
Oh, dear...what a horrible experience. One must be well to be ill....I am glad it did return to so called normal, but still not to be taken serious or even listened to is bad enough. Yes, when you see the haemo doc. ask what to do in case it happens again and make sure it is written down that you asked and of course what you are adviced. It is unfortuneatly true that NHS is just like this now adays. I have also had an experience that lasted 9 days...
In any case, I am glad youare feeling better and hope that you never ever have to go to hospital again....! (exept appointments made beforehand)
Hi Jilly, so sorry to hear about your experience. This is what makes me cross, that when you speak to 111 they do not understand what an MPN is let alone that you might be having a TIA, These people need to have this information on their check list of questions to ask, also what an MPN is.
Really hope you are feeling better now but know just how frustrating it can be, so if it happens again make sure that you get your hubby to take you to A and E and play the C card by telling them that you have a rare blood cancer and that your immune system is comprised some what especially if you like me take Hydroxycarbamide or one of the other drugs, for me this has worked really well fast tracked all the way, so do not leave it again, or the other thing is you can always complain to the PALs dept if your hospital has one. And as for your GP well enough said, not helpful at all.
Hi Jean, I, too, am on Hydroxy and I explained everything to 111 and the less than impressed ambulance crew. I really feel that the health service is under so much pressure that they just don't try to keep up anymore. So sad considering how wonderful it used to be x
Hi Jilly. What an awful experience for you how helpless and vulnerable you must have felt. It’s so hard to believe that you were treated like this. Very concerning. I wonder if you could have called your specialist nurse , it would be worth while asking next time you go to the unit. I know some hospitals do not share you files if you are not in the same health area, which I just cannot understand. I hope you are feeling much better now, Take care
PS. I think it would be extremely useful if we had a card with info on drugs that we are on also a contact number to our haematology units. Maybe that just asking for too much !!x
You can get a card from MON Voice, I think if you contact Maz, thr administrator through this site she can send you one unless the system has changed, I have one I carry in my wallet.
How awful for you and your hubby such a terrible experience. I so agree with the comments made get a plan of action from your doc and I've often thought a print out of what our illnesses are. Make it short and concise and hand it it ambulance or hosp docs to give them an understanding of what you have. Nobody I know has ever heard of MF complicated by the fact I look so well so can't possibly b ill!!! I'm sure your consultant will take you seriously what a nightmare. Take care and I so hope you get that plan of action in place. Pat
I’m not surprised by your experience. Unfortunately after a minor experience (compared to yours) involving my mum and the ward losing her hearing aids I’ve decided that a lot of the NHS woes are because of ‘jobs worth clerical workers’.
I could list quite a few incidents. The poor medical staff are then put under pressure.
I hate to say it though yes! You should have stayed.
Did you know you could complain to P. A.L.’s can’t remember what the initials stand for.
Wow, what a performance, it doesn't give anyone reading this much confidence! When one of my nieces qualified as a nurse several years ago I asked her to let me know if she met anyone with an MPN, specifically ET like me. She hadn't heard of it in any of her training, and all these years later has still not had any experience of it in the hospital where she works. There seems to be a lack of knowledge in all NHS staff just what MPN's are, apart from the haematology department! Hope it doesn't happen again, but if it does call 999.
Thank you Maz and thank you everybody who has replied. I am now looking forward to a lovely Christmas. There is concern that I have had 2 blood tests which show low Potassium but hopefully the 3rd test will just show the previous ones as "blips".
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