Any Help or Advice on next steps and ge... - Anticoagulation UK

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Any Help or Advice on next steps and getting help from Professionals Quicker

Jy1234
Jy1234

Firstly thank you for your replies to my previous post yesterday. My husband came home this afternoon 🙏and as expected is very tired, and a little anxious. Of course we all know that feeling of not being in control of what’s happened! And I would very much like us as a couple to have a degree of control in understanding and managing the fact that he has now had two episodes of PE. I also found last time that we were talked at! not ...with, by the professionals we saw and were dismissed when we inquired for more information. Somebody on here has advised an appointment with a Haemotologist Which I will ask for. Is there any other people, professionals we could ask to speak with. Finally from arriving at A/E to my husband being diagnosed with PE it took 9 hours! despite the fact I told them when we arrived at the hospital what I was convinced it was, and the fact we had experienced this once before. 9 hours delay which could have cost my husband his life. Has anybody had any experience of getting the A/E staff to act quicker and get some medication underway. I don’t want to come across as ungrateful as the team got there in the end but hours ticked by and I find that so hard to accept.

4 Replies
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One always has to wait in A&E unless one is literally bleeding to death. The staff there are trained to "triage" patients on arrival, and those who can wait have to while more urgent cases are seen. They do keep a discreet eye on you so that if you suddenly show signs of needing urgent attention, you'll get it. But they also have to do blood tests and so on, and you have to wait for the results of those, which can take an hour or so. No, if you have to go to A&E, the only thing is to take a good book or a fully-charged tablet and hope, in many ways, that you aren't seen too quickly as that can be ominous! And at that we are lucky that nobody has to worry about having enough money - or insurance cover - to pay for treatment, but that we can receive the best medical care absolutely free of charge! The NHS has its faults, of course, but when all is said and done, when you are taken seriously ill there can be no better system!

As for on-going care, the haematology department at your local hospital should have - probably will have - been informed of what has happened to your husband, and an appointment will be made for him; failing that, telephone your GP and ask whether they know what plans the hospital has made for his aftercare, and if none, what should happen next.

Cotton50
Cotton50 in reply to mrsredboots

Firstly thank you for your reply Redboots. I have given much thought to your reply and accept that there is always a wait at A/E. However, my husbands case was urgent, I knew he was having a PE as experienced before. And I certainly, or my husband ... could not have read a book! Knowing that at any time he could have lost his life. Blood test results do not take 8 hours, therefore I cannot accept that 9 hours wait when a life is at stake, is acceptable. I felt I had to reply to you as it is something I feel very strongly about. I have asked myself many times how many lives are lost by not acting on information given. My husbands story could have had a very different outcome through people who should know better not listening and gross incompetence in not acting upon the results far quicker.

I’m glad that your husband is home safely. As a couple you have experience a second traumatic event and I quite understand your need to take control. Two ways that spring to mind are to seek some kind of talking therapy for trauma if that is your bag, and the second is to learn everything you can about thrombosis. A good starting point is the Thrombosis UK website which has lots of useful information: thrombosisuk.org/informatio...

The other good source of information is NICE guidelines - google ‘NICE Apixaban’ for example and you will find a page that has recommendations on the advice that should be given to patients. cks.nice.org.uk/topics/anti...

I found that the best medical practitioner for advice was the haematologist and I would recommend you ask for a referral. Perhaps if you are due an outpatients follow up you could ask then, or ask your gp. If you didn’t have investigative blood tests after the first PE, you should have those done to make sure that you don’t have a ‘sticky blood’ condition. You might also need a scan after a few months to make sure that you don’t have pulmonary hypertension and that your heart has returned to normal. Have a list of questions to hand!

The recurrence of PEs for people whilst they are taking Apixaban is very low so if your husband continues taking it for life now, it is unlikely that he will have another PE.

I think you did absolutely everything you could have to expediate your second diagnosis at A and E. I couldn’t have sat down and enjoyed a book in the circumstances and it is very distressing watching so many very poorly people waiting for hours to receive the help they need. I won’t get into the politics of our health service but I certainly don’t think your experience was unique. x

This is why the NHS is so inconsistant.About a month ago I had bad pains in my lower left leg,shortness of breath and generally feeling crap.''I also have a history dating back to 2012 when I had multiple blood clots in my lungs and PE'',whilst living abroad.My partner phoned 999 and they were here in just over 10mins.Got took to a/e where the usual blood tests were done.I was kept an eye on until about hour and half had gone and was told by a doctor that I was to have a ct scan.that along with a dopla scan and chest xray took place in the next hour,So I had the three proceedures inside approx 2 and a half hours.

No clots were found

Is it what's refered to as the postcode lottery within the NHS....I don't know

Rather have a broken leg than worrying over whether clots will come back,at least you can see the break.

Good luck with your next step..I doknow the feeling

M

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