Been waiting over a year for a referral to a haematologist

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Had a large saddle P/E in January 2015, (previous history of DVT), and been on warfarin and now on rivaroxaban for lfe.  I was told on discharge from in-patient treatment that I would be referred to a haematologist as part of my ongoing care.  I'm now 16 months on from diagnosis and still waiting for this appointment.  My pulmonary specialist is supposed to have chased up the appointment as has my GP.  I have also contacted the secretary to the haematologist myself but have heard nothing and am still waiting.  I really feel it is time to escalate matters but have no idea where to begin.  Any suggestions please?

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12 Replies

  • Posted

    I recently had a poor interaction with a haematologist (in fact most of the Haematology department)

    i went on the NHS choices website for my hospital and posted a poor rating, setting out what I was unhappy about. I had a reply two days later from the head of patient care asking me to phone her and wishing to discuss the problem. I noticed that the previous person who did this also had a similar reply and he was complaining about the lack of an appointment.

    i suggest this might be a good route to take - I've not called her back yet but I plan to.

    you really should have had your appointment much earlier. I am quite angry for you.

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    • Posted

      Hi steve

      Thanks for that,  I have just posted some comments as you suggested - now to wait for a response.  Hope you get somewhere with your complaint.  I do appreciate that NHS resources are somewhat stretched these days but it is too important to just let things slide.

      Best wishes

      Alex x

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    • Posted

      Steve....thank you so much for your suggestion re NHS Choices.....it worked!!!!  Someone responded to my poor rating and negative comments suggesting I get in touch with PALS.  I did this and 6 days later I got an appointment letter through.  Then later that day I had a telephone call from the hospital apologising for the long delay saying that there had been a communication failure and I should not have had to wait so long.  Also saying that they are about to appoint an additional doctor in the department to deal with the back log of patients.  Of course, with my luck, the appointment they gave me is for when I will be away on holiday so it has been re-sheduled for mid June now.  Anyhoo. many thanks for your help...I am just so relieved to finally have it sorted!

      Alex x

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    • Posted

      Super, well done for keeping at it. I made a list of questions ready for my appointment with the Haemotologist. It helped me get a few more answers than if I'd gone in unprepared. I also asked to see my CT scan and results. At first she was reluctant to show me as she didn't see the point but I told her that it would help me mentally deal with the situation if I knew what it looked like and the extent of the PE's so she relented.

      good luck with the appointment x

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  • Posted

    Hi

    I have just had my second lot of bilateral PE's. Rivaroxaban for life. No mention of a haematologist however I have had a blood test taken at my own GPs they are checking for any underlying causes such as genetics/hereditary stuff. They are also doing blood test and CT scans looking for cancer as I'm told that can be a precursor for blood clots. Good they being thorough but scary waiting for results. Has anyone else been checked for cancers if had second PE

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    • Posted

      Hiya,

      I was referred for the tests you mentioned after I was first diagnosed. Fortunately they found nothing and are still unable to pin down the reason for my PE.

      The tests were tedious but I was grateful for my full MOT. Good luck try not to worry. Xx

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    • Posted

      My hematologist just took 13 vials of blood to see if she could pin down a reason for my first PE.  No family history, I'm thin, eat very healthy and exercise when I can.  I have little stress at home, no kids and pets so I am very lucky to be able to try to recover tat my own pace and not feel guilty(a huge problem for sick people overall).  I get my results in 2 weeks but don't really expect any bombshells.  I do not travel and my dot came from my left arm going to the bottom of my right lung.  Jeez, these things are painful.  It is less than thrilling to know this pain may or may not go away in the future.  I was scanned in the hospital for cancer and was cleared.  They also tested everything I've never heard of via blood work.  It all came back fine.  Don't stress out about your impending results 'cuz you change what they are going to say.  Sounds easy, huh?  I know it is difficult but after 28 years of chronic illnesses, I tend to take what I have and make the best of it on the days I can and on the days I can't, I stay in bed.
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    • Posted

      Hi there and thanks for your reply.  Pleased to say that I now have my appointment, (see my latest reply to Steve 1966).  Good luck with your results....would be interested to hear more if you would care to share when you get them.  I'm a bit like you in that no family history, not overweight, eat healthily, walk a lot, no stress, no worries (apart from this health scare).  I do travel a lot, or did!  To see more of the world was built into my retirement plan....now put on hold apart from short haul flights within Europe sadly.  Hope to get my confidence back eventually tho for the long haul trips.  Onwards and... er.....onwards!!
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  • Posted

    Hi, Your GP can refer you to a consultant at any NHS hospital. Have you had blood tests to find out about underlying causes? Have you any symptoms that bother you or do you just want to see a specialist to get reassurance?

    Good luck. Sheila.

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    • Posted

      Hi there

      My pulmonary consultant arranged for some blood tests about 3 months ago as they felt there was a possibility of an unrelated auto-immune disease, (been having lots of weird symptoms - face rashes, muscle weakness, hair loss, chest pain, leg pain etc etc).  I was supposed to get the results from the elusive haemotologist!  My GP did have a look at some of the results and told me my iron and vit D levels were very low so I've now been prescribed supplements.  It clearly says in my notes that I should have been referred to a haemotologist over a year ago.  It is supposed to be the policy of my Health Authority for anyone prescribed NOAC's (eg rivaroxaban) to be referred to haemotology.  My P/E is supposed to have been provoked by a long haul flight.  I also had a DVT many years ago and have had cancer previously...hence being a lifer on rivaroxaban.

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    • Posted

      To everyone that is on blood thinners;  get a medical alert bracelet or anklet that says "BLOOD THINNER" on it. In case you have some sort of emergency and can't speak for yourself.  It is also best to carry an ICE ( in case of emergency) list of 3 contacts who know your medical history.  Have your list of meds on you always, just in case.  You will be treated differently if you are on warfarin vs Carleton, for instance.  Be proactive and protect yourself.

       

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    • Posted

      fixing a mistake.  I meant warfarin vs Eliquis or any other blood thinner.
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