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age related diagnosis for PE and DVTs

Posted , 12 users are following.

gillian81509
gillian81509

hi

new to this site

My son nealry died in june and naturally i was a tad upset so i have complained 

sadly the repsones are 'we didnt consider him to be a priority for a dvt/ pe as his age is inconsistant with Data' ( he was 32)

the various health professionals had not followed the NICE guidlines as reading your various posting it would appear many of you have suffered the same  

However, i would be very grateful to be able to get an average of the ages   and for this i would be so grateful for replies and ages /gender

looking forward to hearing from you 

He has recovered significantly since June but requires a life time of therapy  and compression stockings

many thanks  

1 like, 39 replies

39 Replies

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  • anyakesh
    anyakesh gillian81509

    Posted

    Hi 

    Sorry to hear about your son. My diagnosis was missed twice too even though it was obvious. Broken foot, plaster cast, return flight from Thailand and I was on the pill!! 

    When I was finally diagnosed having been sent home from A&E I had a PE. This was 2 years ago and I myself was 31. 

    I hope this helps. I think it is shocking that people are still being passed over and not considered for thrombosis. I hope your son make a full recovery. 

    Anya 

  • anyakesh
    anyakesh gillian81509

    Posted

    Hi 

    Sorry to hear about your son. My diagnosis was missed twice too even though it was obvious. Broken foot, plaster cast, return flight from Thailand and I was on the pill!! 

    When I was finally diagnosed having been sent home from A&E I had a PE. This was 2 years ago and I myself was 31. 

    I hope this helps. I think it is shocking that people are still being passed over and not considered for thrombosis. I hope your son make a full recovery. 

    Anya 

  • -.a-way_forward
    -.a-way_forward gillian81509

    Posted

    hello gillian81509,

    cc. Anya,

    I am learning to search feelings, and empathic response through reading and understanding more.

    i feel this forum is like a place to 'let it go'- smile

                   

    Like the song from 'Elsa and Anna's Frozen'

    YouTube safe filter search 'Let It Go Sing-along' 

    'ian'

    xxx_ smile

      

  • rachel63208
    rachel63208 gillian81509

    Posted

    Hi- I was 45 when I had mine and had only recently had a scan on my left leg for a DVT which i was told was basically normal. 2 weeks later I had a hernia operation and 5 days after that the PE. I was also on klow does HRT. Warfarin for a year after  and pain and repearted chest infections 8 years on. Sadly the tales don't get any better do they? I do hope your son goes on to recover well
    • -.a-way_forward
      -.a-way_forward rachel63208

      Posted

      Hello rachel63208, gillian81509 and other readers,

      The use of language and words to bring comfort solutions to individual cases of dvt and pe.

      For example, someone with with religious beliefs is in cycle/lock-step with their understanding of their beliefs imo. These beliefs are founded by themselves and environment or vice versa imo, before and during dvt and pe.

      After dvt and or pe, my experiences...

      language, therapy, and medication has resulted in new feelings and experiences. Every breath, heartbeat, movement of blood, adrenaline and or hormonal changes have increased in range. 

      'I need want my heart, lungs and blood, medication to live, I don't need reminding!

      It is obvious. I started without medicine, why should I be ' labeled ' with it, hear after? My eyes/senses are open. I am resourceful to understand and learn.

       - a guide to healing and 'learning to live better' is my wish.

      Please show me and I follow and stand tall

      on my own and 'just be' all I can. 

       'this is my time now.

      I am breathing, my heart is pumping, blood is flowing...

      .

      .

      .

      .

      Thanks for an opportunity to express.

      I hope my thoughts are sound and logical to understand online.

  • Boval
    Boval gillian81509

    Posted

    I was 52 and fit. I walked at least 4 miles everyday as a part of my job and swam one hour evening but I Was diagnosed with multiple unprovoked bilateral pulmonary embolism. Just goes to show that this condition can effect anyone at any time. 
  • sheila91262
    sheila91262 gillian81509

    Posted

    Hi gillian, I understand your frustration etc, been there, got t shirt. My son was sent home after 2 weeks post abdo surgery, no anti coagulation, no leaflet, no evidence of dvt risk assessment. He developed massive, extensive dvt requiring 2 weeks in hosp. 6 months warfarin and stockings and still has pain and swelling as diagnosed with post thrombotic syndrome, no treatment available so signed off by vascular consultant. I am mad but tenatious, so have spent ages researching and asking questions. My son  has a referral to Guys Hosp London, to see Vascular cons Stephen Black, his team are first to offer nhs treatment and minor surgery for stenting and scar removal for PTS etc. First surgery was in Feb 14, so most nhs hosps dont even know about it yet. We are hopeful that he will be treatable and he can get his life back again, and end the daily pain and swelling.

    We are on 2nd complaint to local hosp and have written to ombudsman as NICE guidelines were not even followed, we are prepared to go all the way as lessons need to be learned so others dont suffer like us and unnecessary deaths avoided. He didnt die but that was just luck not good nhs treatment.

    Look at charity Lifeblood and Mr Stephen Black at Guys, also World Thrombosis Day oct 13 2014 on internet for further info. Good luck.

     

    • gillian81509
      gillian81509 sheila91262

      Posted

      hi Sheila

      The NHS failure to follow NICE guidelines is responsible for so many problems and this needs addressing. They seem quick enough to follow them when its cost cutting like refusing a type of medication.

      The sad thing about my son was this started in January 2014 and he had every symptoms of all the cases but no one added the dots, because he’s an NHS employee. Occupational Health said they couldn’t make a diagnosis and so did the OH Gp therefore even though they noted all these obvious cardiac problem NO-ONE REFERRED HIM onto an emergency specialist.

      My son has a very high level functioning Asperger’s and isn’t the easiest of patients getting quite distressed when things aren’t explained the way his brain has in his mind already sorted them out so if the specialist decided his TIA was a silent migraine he presumed it was etc. etc. and OH allowed the diagnosis from him to cloud their judgment.

      He now has his stockings, he is developing heart problems, with SVT’s and tachycardia moments, has no thermostat regulation and is always in pain.

      However we have followed ‘complaint protocol’ and after our meeting we have received their response that every fault I brought up (and as an x AHP I certainly went to town with references etc. using NICE and Lifeblood etc.) they are now instigating this throughout Solent NHS and all PRESENTING NON SPECIFIC swellings or SOB will be looked at in detail not just whether they are old previously been in hospital etc.!

      We still have more meetings to go to and we have a solicitor looking into the possibility of negligence- rather difficult as its proving negligence rather than just ‘crap’ service etc.

      I will research the information you have given me and put it to my son and I am getting my MP involved to push this to the health minister 

      Many thanks 

  • sheila91262
    sheila91262 gillian81509

    Posted

    Hi again, thanks for reply, I have been venting my spleen to all who will listen since last December and still massively frustrated. My son Rob, who was super fit and a sports mad tennis coach developed inflamatory bowel disease in Oct14. He was 27 then and the picture of health but even though he was lucky at first and was seen by a specialist and put on strong steroids etc he soon deteriorated quickly and went into hosp vias A&E in Dec14. The local hosp was so variable in their care that we soon  became aware that luck played a part in his treatment. After 24 days he was sent home , his body and mind changed forever, lucky to be alive. He had life saving surgery 2 days before christmas and then 9 days in critical care. If only we could turn back time and ask the riight questions, but then we shouldnt hav to be more informed than the medics should we?

    DVT was mentioned on the afternoon after surgery when it was mentioned as 1 of the many conditions he might develop aswell as the the peritonitis he was battling. 14 days later he was good to go home as he was MOBILE!! No other info given, letter of discharge had empty box where anti coagulation was meant to be risk assessed and decided upon. How mobile can you be when you have just had  37 staples removed from abdo, lost 2 1/2 stone, immuno suppressed from strong steroids, almost no muscle left ,anaemic and almost completely bed bound for 24 days.

    Also we know now that the original disease, IBD, leads to sticky blood. None of these were ever mentioned and no family details were taken even though his grandad had severe DVT. I certainly consider that the medics had 24 days and hundreds of opportunities to risk assess him for DVT but the only records we have are 2 assessments done on the computer on day 1, in A&E and then on the first ward ( of many).

    As I have read so many times on other posts,  when Rob 1st had pains in the back of his calf he thought it was a pulled muscle as he was doing his best to walk each day and get fit again. It wasnt until he had been home 14 days that his leg swelled enormously and DVT was unmissable. He went back into hosp for another 14 days, it took him 3 days to straighten his leg and weight bare, walking with the help of walker. To see my boy looking like a skeleton, stooped and wasted away not able to walk was so depressing.

    He is 10 months on and so much better apart from the pain and swelling from the post thrombotic syndrome. As I mentioned in last post he will see Mr Stephen Blacks team at Guys in London on the 17th. I am so hoping that his circulation will improve and he can feel more positive over his future. If the treatment isnt appropriate now then I have faith that the future will bring us progress as these problems affect so many people worldwide.

    Seeing that there is meant to be a major national drive by the NHS to prevent DVT and VTE, especially when hosp acquired then why are there so many mistakes. My experience is that the medics dont take resposibility and so leave it to others to assess and make decisions. In my sons hosp the junior docs are meant to assess and prescribe anti coagulents if required.

    We are awaiting a reply to the 2nd formal complaint having sent in another when the response to the negligent DVT assessment was 1 sentence stating that he wasnt considered a high risk. All of the above symptoms are according to the NICE guidelines judged to be high risk.!! So even though he was supposedly risk assessed, even though there is only evidence of 2 on day 1, they got it wrong. We asked 1 consultant, 1 doctor and 1 sister on the ward when he was in with the DVT why he wasnt anti coagulated and they gave 3 different answers, he might have a bleed, he wasnt at high risk and he was mobile.

    Our major complaint is that they didnt risk assess throughout his stay, they didnt speak to him about the risk and the signs of DVT and no-one discussed his medical reasons with each other which certainly indicated he was at high risk.

    As you said they didnt join the dots and I feel bad that we didnt ask about DVT but as it hadnt been mentioned for 13 days we didnt bring it up as we thought he had dodged a bullet.

    We have 700 pages of hosp notes with not a single word about DVT. I went to an open monthly meeting to the hosp to ask questions and they couldnt explain why there was only 1 risk assessment, held on the computer which wasnt given to us unless we asked. I think we will be proven to be right about negligence but it could take ages and I want people to know that you cannot rely on the medics to protect you, you have to arm yourself with info so that you can ask the right questions.

    I feel now that Id like to speak to a junior doctor to ask what they do in practice to assess for DVT risk and who takes responsibility before discharge. There are so many questions and so few answers. Frustration doesnt cover it.

    Good luck to all!

     

    • -.a-way_forward
      -.a-way_forward sheila91262

      Posted

      sheila91262 »gillian81509 

      I feel now that Id like to speak to a junior doctor to ask what they do in practice to assess for DVT risk and who takes responsibility before discharge. There are so many questions and so few answers. Frustration doesnt cover it.

      ___________

      if junior doctors are interested in the causes of DVT, they will be better informed to accurately assess DVT risk in patients.

      Once an accurate assessment completed, responsibility can be assigned/directed to those responsible to mitigate reoccurance and possible ailments related to DVT.

      We all live in hope or just continue breathing...

    • gillian81509
      gillian81509 -.a-way_forward

      Posted

      hi

      I’m still determined this needs to be shown to the media but i have to wait until all of my sons case is finished and or solicitors get involved 

      NICE guidelines are what junior doctors are supposed to follow they do not have the knowledge to go off on their own diagnosis 

      fight it 

      get an advocate they are free provided by the NHS

      etc.

      I don’t think we are allowed to put personal emails on this site or we could all get together and start an action group

      Any ideas how we can do post or if any of us want to 

    • -.a-way_forward
      -.a-way_forward gillian81509

      Posted

      full of cold at moment...

      no energy or will to fight period.

      what purpose is there to use media to embarrass NHS? What do you expect to achieve?

      May be better to work with NHS.

      What is the point of the action group? Who benefits?

    • gillian81509
      gillian81509 sheila91262

      Posted

      It’s because they didn’t follow the NICE guidelines wherein they would have ticked all those boxes and not relied on outdated statistics concerning age and illness etc.

      Have you accessed the NICE guidelines for DVT and PE and seen the algorithms for proving a DVT or PE or at least enough proof to run tests?

       The NHS will say they are ‘not statutory we don’t have to follow them’ however, they do, because the government set up NICE as a means of stopping post code lotteries and therefore it is each NHS trusts responsibility to ensure all NICE guidelines are placed into each relevant department within three months of their printing and that each HOD must ensure all the staff have seen them and  acknowledged the NICE guidelines. So in your argument you simply argue that they  NHS[Trust] failed to follow  etc.

      This is a breach of policy and protocol and their failure to follow has led to[??????]

      It infuriates me to see there didn’t ‘appear to be a dvt’, so why? The sentence is illogical.

      to say it didn’t appear then they must either of only had a visual glance and that is not a recognised DVT test or they must have conducted the various tests for a dvt and then decided that even though there were positive signs they would subtract his age etc. in that case he did have and they made a mistake.

      Emis Moderator comment: I have removed the rest of this post as it contained personal information and details unsuitable for posting in a public forum.

    • gillian81509
      gillian81509 -.a-way_forward

      Posted

      Hi 

      it's not really to embarrass the NHS but to ensure that the numbers affected reduced.

      I would like a few of us to get together so we can present our findings in a meeting with the health ministery.

      I'm doing this as my son is like you exhausted tired and is happy for me to fight on his behalf.

      hope you get better 

      you can msg me in the private message box 

      take care 

    • titanium
      titanium sheila91262

      Posted

      Sheila, I have just read this, and my heart goes out to you for what you and your son have gone through.

      My husband died of a pulmonary thromboembolism. His name was Rob too. If you have time, maybe take a look at " Avoidable DVT Death Of My Husband." His death certificate was issued on his 60th birthday, that was his gift from the NHS. They encased his damaged leg, in a heavy plaster of paris back slab cast, only his toes were visible. He had an achilles tendon rupture. He was left like that for the first 11 days. No mobility, no risk assessment, no warnings. The website " Lifeblood " has a GOVERNMENT policy for thrombosis. Mandatory risk assessments for DVT have been actioned since 2009, they just don`t always implement them. Why ? Probably to save money..

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