thrombosis after dvt

That's terrible. A&E have a lot of answer to. I hope you are able to find a haemotologist to help.

Hi I read your story and I am so sorry for your loss. I believe you have read about our story and I feel now I have loads of info about how these problems arise.

The NICE guidelines on VTE assessment are adopted by the Hospitals as their policy for VTE assessment and prevention for in hospital acquired VTE. They are required to assess all patients at A&E or when they are entering hosp on a ward for pre arranged procedure. The junior doctors ( we were told ) are responsible for the questions to be asked and there is a form to be completed. My son was not asked these questions.

The hospital has a target to assess at least 95% of all inpatients and is fined if they dont. They then anticoagulate all patients during their hospital stay by daily Heparin injections unless they have a blood problem which means it would be dangerous. Records by the bed record the injections for each patient.

The VTE assessment is meant to be done on arrival and at each point there is a significant change such as when treatment changes and if the patients health changes. This is done on the ward computer by junior doctor seeing that patient and each page has a space for date, name and comment, such as operation. It is meant to be completed so that a trail can be seen. My son had 2 identical pages with lots of dates which didnt make sense, no names by the comments etc so no audit trail also as it didnt make sense it couldnt be used to make an informed decision as to whether the blood thinners should be continued after discharge. The discharge forms also had no names or decisions recorded but he was sent home without blood thinners or info given to avoid DVT.

We have spent 17 months researching and asking questions, following the expected route. We spoke to PALS, sent a formal compliant to hosp, read the appalling answers, sent 2nd formal complaint as we were so disgusted with the first reply, got the 2nd reply and then requested a formal meeting with the Trust. We asked for it to be recorded, it was by an employee in long hand! We were able to request Director of Vasc Medicine to be there.

Long story short, we all looked at copies of VTE assessment and asked for explanation, none was given as it was inexplicable. They argued that there was an informed decision not to send him away with blood thinners but did concede that it wasnt recorded nor was there info given to the patient. They have changed their policy now so that patients with Ulcerative colitis are discharged with several weeks of anticoagulation so hopefully there wont be any more problems like ours. So a result, but it took a lot of perseverence to get there.

We sent our complaints to the Ombudsman who has informed us after 4 months that they will now investigate as they agree that the hospital needs to be looked at. We are hoping for Negligence to be found and we will ask for compensation, but we still think we will go to court afterwards. We want people to know that mistakes are happening all the time and it is important to educate and protect yourself.

Good luck

I am almost 3yrs in with this nightmare Sheila, and that is my aim also.To warn people of the dangers, so that they have the knowlege to protect themselves.

I have contacted PALS, CQC, Health Ombudsman, Sir Bruce Keogh, my local Labour candidate, and recently, The Clinical Commisioning Group. I also have a solicitor. Without medical backup, someone on your side, a court case is unlikely. That`s why I need the support of a Haemotologist, and time is running out. If these hospitals could see the knock on effect of the human devastation, lives ruined, families broken, maybe then, they would take more care. Good luck to you too.

It really isn't right that the NHS can get away with such negligence and a very uncaring attitude. I would be interested (if it's allowed) to know which Trusts are involved. I live in East Sussex and it's the South East Healthcare Trust that I am fighting with over the care, or rather lack of care, for my Mum (though not because of a DVT and very different circumstances) and hitting my head against a brick wall. I hope the Ombudsman will agree with me, but its more than likely that, down to more lies, they will believe the trust.

I saw my GP regarding the pain in my calf this morning and I was just told that I had PTS and that, as I was taking Warfarin and my INR levels were OK, it was very unlikely I'd had another DVT. That was it, apart from prodding my leg. I've come home feeling anxious and do I just accept what I'm told. I had my INR level checked as well and the nurse told me, more or less, the same thing. So I have to take it they are right. I don't understand why a further ultrasound isn't taken. I could come off warfarin now (it's been 3 months since the DVT) but have decided to keep taking it for longer, especially as I have this current calf pain. It seems that all the time doctors can give you a "pill" they just send you home. Tomorrow I'm having an MRI on my left knee (same leg as DVT), Consultant Surgeon has already told me he doubts he'll operate because of the DVT. Do I just spend the rest of my life in pain? Still will wait to see what he says after MRI and then worry!!

Hello. I live in the Northwest on the outskirts of Liverpool. I so wish I could tell you the Trust involved, but really don`t think it`s a good idea at this moment in time.

The fact that you are on Warfarin, is a plus in your favour, but I can tell that you are concerned. Not entirely sure how much an MRI Scan shows, but you could voice your concerns tomorrow when you go. Even though it is for your knee, they may be able to give you some information. Don`t be afraid to ask questions, this is your health at stake. You have a right to answers.

Re. an ultrasound. If you feel that it would ease your mind, then I personally would demand one, especially in light of your recent problems. Please let me know how you get on.

There is an advocacy service which might be of use. Have you spoken to your GP about having a second opinion of your husband's case? I don't know how it works but I'm assuming that the CQC or Ombudsman would have had Medics look at the records. What does the solicitor say about an expert opinion?

We have hundreds of pages of hosp notes and I had a meeting with a Matron at the hosp to read, interpret and explain the bits we were unsure of. Some pages were not automatically included eg computerised notes such as the VTE assessment and the front pages of the nursing observations. So we went back and asked for them. We also have copies of any meeting notes where the patient or circumstances were discussed. It took 3 months to get these. Thank goodness for the Freedom of Information act. I have also attended the monthly hospital Trust meetings which are open to the public and the dates are published on line on the hosp website. Their minutes of meetings are also available to read online and you can ask questions at the public meetings.

I have made myself pretty noticeable but kept polite so as not to get asked to leave. More information is important, I reminded the Chairman that part of his role is his Duty of Candour, so he must answer questions and find out answers even if he cant at that moment. He tends to be more helpful when the rest of the board are listening!

The All Party Parliamentry Group has a VTE prevention committee, I havent written to them yet but I had pages of their findings as part of my notes when I went to see the Trust.

I hope you get the answers you need, I was in so much pain because we almost lost our son because of a preventable DVT that I pretty much lost it for a while, counselling helped. Now I want to see this through and reach a conclusion that satisfies us all. I don't care how long it takes.

Hi, I have written a lot on here about DVT and post thrombotic syndrome as my son has PTS. He has been seen by Mr Stephen Black at Guy's and St Thomas Hospital and is a candidate for stenting to help with his leg swelling and pain. He will have that soon, but he has had one 3 hour opertion recently and is due another as he is having a reversal of his original bowel operation, which was the reason he was in hospital in the first place. The new hosp he went to for surgery were fully aware  of previous DVT and treated his blood accordingly so operations are still possible it just needs careful monitoring and warfarin afterwards.

My son has ongoing pain in his leg and still wears a stocking all day.

Stenting is now available in London, Manchester and York. Go to DVT May Thurners syndrome facebook for more info.

Hope this helps.

 

When my husband had that first horrendous cast on his leg, I struggled to get him into the car to take him to our GP for a doctors note for his work. He drove for a living. There is no record to the nature of that first cast, other than witness statements of family and friends. When I spoke to GP and receptionists, surprise, surprise, they ALL seemed to suffer from amnesia. Also, the GP had not made any records either. I recently spoke to her regarding my desperate need for a Haemotologist, was told she couldn`t help, CCTV at A/E , when I enquired, is overwritten after 2 weeks.

Via the solicitor, it is the orthopedic expert who says to find a Haemo. I also have so much paper work but barely any hospital records, as hardly any were made. What I do have, are my husbands medical records, transcript from the inquest, tons of other stuff, and his Autopsy report.! I understand a mums need to protect a child, no matter how old they are. Keep fighting, ..... as I will too.

You may already know this. Limitation is 3 years. That`s how long you get to bring Legal Action against a Hospital Trust. I noticed that you said 17 months have gone by, just thought I would mention it.

Also, apparently,no judge can make a doctor or hospital apologise,or implement changes within that Hospital Trust.

It`s a disgrace.

Maybe they won`t. There has to be somebody with a scrap of humanity, who will empathise with you and realise that the treatment of your mum was wrong. Don`t give up hope, your mum will be willing you on. x

Thank you Sheila. Will look at the facebook page.  I hope your son will be OK and recover quickly from surgery.

I will certainly ask when I have the MRI tomorrow if anything like a DVT can be detected.  It was reported as being behind my knee in February, so in the right area.  I think that, at some stage, I will get more demanding about another ultrasound. I understand why you don't want to mention the hospital trust.  Will let you know how things go tomorrow.

 

Thanks and let me know how you get on.

He is glad that there is something to look forward to, he considers himself lucky to be where he is now and I'm grateful for that.

Hello, just got the usual standard answer when putting questions to radiologists .... you'll have to ask the Consultant at your appointment!!  Hopefully I'll get that soon and will bring you up to date then.

It was worth a try. I hope you don`t have to wait too long.

My name is Lyn by the way. Take care.

Thank Lyn, Janis.

I dont tink the care is good enough anywhere. Ive just been told I have to wear stockings forever as I have PST thanks to lack of primary care. The haematologist I saw asked me to write a letter of complaint so she can compile an order of care for all gp surgery's. Without patients helping out sometimes, I guess there is no moving forward. It is just a shame when it's a patient's expense.

You already have the Haemotologist on board Karen, you could take this further. Your lifestyle has been altered for ever, due to their lack of care.

Sometimes the expense that we pay ..... is too much.

Thankyou for the info. Lyn.

Thank you Lyn. Yes you are right. Part of me feels it should go further and I should be compensated. The other part feels there isn't enough money in the system as it is. Taking more out won't help others at all and deprives the NHS of much needed funds. Besides that, it won't give me the quality of life I so took for granted back will it?

Regards to you.

 

You are right Karen, compensation won't necessarily give you back the quality of life you had but it will help.  All Trusts have insurance to cover medical negligence so you wouldn't be taking funds away from anyone else who needs it.  I do think that Trusts make it so difficult to get answers, help and compensation and you reach a point where you just can't go on anymore hitting your head against a brick wall.  This is what they want so, if you can, persevere and get some help.  Good luck.

So agree, raising the awareness of avoidable medical errors is important for everyone, we need  to educate ourselves and fight the Trusts so they don't make the same mistakes. Yes it is the Insurance companies who pay up and the Trusts who are the ones who need to say sorry!

Medical Ombudsman has agreed to investigate on two counts and will request compensation but still want to go to Court! Want to see them wriggle.

No it won`t Karen. However, if we don`t speak up and challenge what we know to be wrong......everything just carries on as it was.

People die, some are disabled for life, and the NHS cover these facts up.

My last image of my husband is when I walked into our bedroom that dreadful morning. I heard him come out of the bathroom and called him to see if he felt like some breakfast, he hadn`t eaten much over the previous few days. He didn`t answer me. A few minutes later I went upstairs and found him on our bed. The shock and horror of the events that followed are indiscribable. The ongoing trauma, and the devasting effects it has had on my daughter and grandchildren, is only part of the reason why I am fighting this.

The main reason ....is justice for him.

This is not about money. This is about accountability.

That hospital wiped him off the face of the earth......with the proper care, it is my belief that he would still be here.

There is also the matter of falsified ambulance records..

I told the paramedics that morning, about the forced manipulation of his foot two days before, which was 30th July , and the cast was changed.

Records read " wife said cast changed on the 2nd of July "

No I didn`t..

They know that forced procedure should never have taken place, and have chosen not to record it. But I have a letter that was sent from the hospital to our GP which proves it did happen.

I know our situations are very different, but I hope this information clarifies why I have to fight with every ounce of strength that I have.

To ignore it...... is not an option.

You do not need for one second to justify your actions at all. Of course you need some answers and you are right, to fight it is to maybe change things. I hope you manage to find some answers, an apology and some peace. My thoughts are with you. x

Thank you Karen.

Take good care of yourself.

Lyn. x

Hello Lyn

Just thought I'd update you on my knee/DVT.  I definitely need a left total knee replacement and it really needs to be done now. However, the surgeon wants to wait for a year after the DVT was diagnosed so looking at March/April 2016.  If it gets worse and I can't wait, will have to have an "umbrella" inserted above the knee to stop any clots travelling. In the meantime my right knee (already has had 2 athroscopies and have been told it'll need replacing in 5-10 years) is getting worse as its compensating for the left!

I hope you have been able to make some progess. Were you able to find a haemotologist to help?

Best wishes, Janis.

Hello Janis,

I am so sorry that they weren`t able to give you better news.It`s a long time for you to have that worry. Yes, your other leg and knee will take all of the strain. How are things going about your mum? Have you heard anything?

No progress this end, and no Haemo.

My local MP is now writing to The Secretary of State For Health.

I am almost knocking myself out against that proverbial brick wall, but you know how that feels.

Surely someone has to care about what is happening to our loved ones.!

Keep in touch.Lyn. x

Nice to hear from you Lyn.

Latest from Ombudsman was an apology for taking so long, but they have a "very high workload"!!!!  Not surprised with all the complaints about the NHS.  It's frustrating, but I'll keep persevering. 

Sorry you've not had better news, but I hope your MP will be able to help.

I'll let you know when I get a reply from Ombudsman and please let me know how things go for you.

Janis x

Hi

Hows it all going for you?