Shocking letter from cardiology - British Heart Fou...

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Shocking letter from cardiology

Darkshades profile image
72 Replies

I’ve just had a shocking letter from the cardiology department of my local hospital which has really shocked and upset me. It was from a telephone conversation I had with them some weeks ago having been transferred to their care after having a mitral valve replacement on the 7th of October 2020 At Barts hospital in London that went terribly wrong - spending 3 months in hospital and 6 of those weeks in ICU completely sedated!! and also ended up losing 2 stone in weight and muscle loss, tracheotomy and a very serious infection in my wound! Id been critically ill

There are a number of errors in the letter! They state the operation was in December 2020 it wasn’t, that’s when I was discharged having spent 3 months hospitalised. It states I’m on Losartan 30mg - I’m not! But should I be?

It states I attended A&E 23rd February 2020, (I didn’t, it was this year 2021) with general weakness and decreased appetite as well as shortness of breath … I didn’t! I attended the A&E as instructed by my GP as they thought I might be bleeding internally due to a blood test result.

After spending 24hrs in A&E, numerous checks, 2 blood transfusions, they said I wasn’t and discharged me.

But the thing that has really shocked and upset me is that they state I have, which no one has mentioned to me; that my past medical history after post-surgical complications, atrial fibrillation, left ventricular systolic dysfunction!!!!

Not knowing what they meant I looked them up 🙄. AF states fast and irregular heart beat, as far as I’m aware I don’t but perhaps that’s due to the drugs I’m on. Looking up LVSD it says that only 50% live less than 4 years … I’m so worried 😥

I’m feeling what is the point!!!!

I’ve tried calling the Cardiac doctors secretary, but the voicemail says she’s out of the office till next week and if any concerns about condition, treatment or medication to call my GP. Called the GP but can’t get a telephone till next week

😭😭😭😭

Can anyone help me with reassurances or anything to put my mind at ease

(Sorry for the long post)

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Darkshades
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72 Replies
Lezzers profile image
Lezzers

The first thing I can reassure you about is the 4 years life span, that's a load of tosh!! My husband has lived with lsvd since at least 2012 & I know of many many others who've lived with it far longer & live relatively normal lives, with meds, life style changes etc.

It's shocking but not surprising the hospital has given so much incorrect information, I've also seen incorrect info on hospital letters including the wrong year my husband had his cardiac arrest!

Can you contact your GP's secretary and ask him/her to find out what is going on here or could you phone the cardiac department you were under and ask to speak to the cardiologist you spoke to last week or another cardiologist so that you can discuss your concerns.

The other option is to contact PAL's and complain to them, has the hospital got the diagnosis right if they've got just about everything else wrong!

Please try not to panic, though that's completely understandable.

Good luck

Milkfairy profile image
MilkfairyHeart Star in reply toLezzers

I agree with Lezzers contact the Patient Advisory Liaison Service PALS of the hospital. You should find their contact details on the hospital's website.

Darkshades profile image
Darkshades in reply toMilkfairy

Thank you I had thought of it but due to the events of the operation - please see my lengthy reply to Lezzers

x

Milkfairy profile image
MilkfairyHeart Star in reply toDarkshades

I have read your reply to LezzersI am so sorry that you and your family have been through so much.

I can understand now why you might not at the moment wish to contact PALS. You do have upto a year after an event to contact them.

I would also suggest you write everything down.

Perhaps also ask for a face to face appointment with a senior member of staff such as one of the Matrons.

You are a remarkable person to be still with us despite everything.

I send my very best wishes to you and your family.

PS.

I also agree with Lezzers regarding Pumping Marvellous they are a great source of support.

in reply toLezzers

This requires formal letters of complaint from yourself to the GP and to the cardiac department, naming the doctor who wrote the letter.Work your way through the issues which are wrong as you have done with us.

Point out the confusing new information in the letter.

State that you require the innacurate infirmation to be corrected and a proper explanation of the new issues in a face to face meeting.

Make it very clear that you wish this comlaint documented and that you are prepared to escalate the complaints process if you are not satisfied.

There is no point in talking to one secretary or receptionist after another. They do not know what is going on and are mainly there to provide a firewall between you and those responsible for this nonsense. Good luck.

Lezzers profile image
Lezzers in reply to

I think you've replied to me by mistake but I think the poster will still see it.

Darkshades profile image
Darkshades in reply to

Thank you Littlepom and I did see it 😃👍

I’ve now written back to the named Dr in the cardiac department of my local hospital and have questioned and queried and corrected his letter, paragraph by paragraph. I’ve done a further copy for my GP to read and my husband will drop them in by hand to each tomorrow

I also asked to be contacted ASAP

Thank you again. X

in reply toDarkshades

Well done you! I hope that this concentrates their minds to report accurately and to give you all the information that they should.

LBCdance profile image
LBCdance in reply toDarkshades

Good for you, that needed doing, And don't forget PALS as a resource if you need it (though sincerely hope you won't). I was never a "poor me" person and fully understand the pressures put on all workers in the NHS, but it never was a soft option and the rewards in job satisfaction can be great, but you can feel so alone at times when nobody seems to care very much or listen to you. My mantra is always that even when doctors can't cure you their first tool is always kindness (not the sentimental kind) listening and respect, makes you feel like a human being! Hope all goes well from now on with your husband and you, you need some TLC too.

Darkshades profile image
Darkshades in reply toLezzers

Thank you Lezzers, you have given me some reassurance - thank you x

I managed to get through to the surgery today but could only speak to the receptionist. I explained what had happened and she checked, they haven’t even received the letter yet though it was put in the internal mail and the letter is dated the 4th June! The earliest telephone consultation is next week and after the cardiac secretary returns to work

I had been considering contacting PALS in regards to the operation itself! All anyone ever told me was that I’d been very very ill!!! I remember getting on the trolley on the 9th of October, but nothing else until sometime in the middle of November! My husband had been called into the hospital ICU and even whilst Covid was in full swing as they didn’t think I would make it. He’d been told by someone that whilst I went into ICU, I’d coughed and opened up what they had done, causing me to bleed and was taken back into the operating theatre again and recut open etc

He was told by someone else that they hadn’t put the mitral valve in the right place and had left a gap… causing me to bleed internally … I had to have a massive blood transfusion…

So we don’t really know the truth except for I had to have 2 OHS on the same day and because they didn’t want to have to cut me open again, left the wound open (which became seriously infected) I also caught pneumonia in there too! and also had a tracheotomy. Also something else happened, not sure what but I had to be operated there and then in ICU …

I of course was totally unaware but the stress my family was under was enormous and of course now I’m finding things out I find it all very distressing. I found out some weeks ago that I’d also had a cardiac arrest!

Best shut up now as I’m near to tears again …

Thank you for your help, and sorry to bend your ear so much x

Lezzers profile image
Lezzers in reply toDarkshades

Oh my , you have been through so much and so have your family. Don't worry one iota about bending my ear, you are absolutely amazing to have gone through all that and still be sane! If your diagnosis of lsvd is correct, under NICE guidelines you should be referred to a specialist nurse who will be able to sort out medication, advice support & counselling, which really could help you deal with everything you're going through.

If you do Facebook, I would recommend joining the Pumping Marvellous closed Facebook support group. It really is a lovely, friendly supportive group who will really understand what you're going through. It's good to know you're not alone xx

Darkshades profile image
Darkshades in reply toLezzers

Thank you So much for your kind words, support, encouragement and the extra information - it’s really helped thank you x

Do you happen to know what sort of medication should be given for LVDS, as perhaps I’m already on it

When I was in hospital I was on 17 tablets a day!!! 😱… but just had a count up and I’m now down to 8 👍

Yes I’m on FB and will look that group up

Lezzers profile image
Lezzers in reply toDarkshades

HF meds usually consist of an ARB/Ace, beta blocker and diuretic but all meds are individual & it would depend on symptoms etc. There is also Entresto and dapaglafloxin ( I may have spelt that wrong!), These are fairly new meds, dapaglafloxin was only licenced for HF last November, only your cardiologist or specialist nurse would be able to say what meds would be suitable for you My husband is only on a lowish dose of candesartan because it affects his blood pressure & potassium, he also takes a beta blocker. He cannot take diuretics as again these affect his potassium and/or blood pressure. He's very reactive to medication! As an example he's recently been put on iron tablets as he has iron deficiency anaemia, but he had an allergic reaction to the tablets and has now had to stop taking them. He also takes a statin and considering how he reacts to meds he's never had a problem with these. Good to know your meds have been reduced to 8 a day, that's a lot easier to remember!!

Darkshades profile image
Darkshades in reply toLezzers

Thank you again and good information… and can Happily report that I Am on Entresto 24mg twice a day!!! 👍

My cardiac nurse who is so good and knowledgeable, put me on them a few months ago! He did it through his boss? As he said a GP wouldn’t sign it off as they are so expensive. I believe there are 3 strengths to Entresto and they try to put you on the strongest. He tried to put me on the next strength, but that didn’t agree with me as I kept feeling dizzy, so am back on the lower dose!

Thank you again for this information as it’s relieved me some what to know I’m already on this medication

x

Lezzers profile image
Lezzers in reply toDarkshades

I don't think GP's are allowed to prescribe Entresto at the moment, though that is being looked at.

From what I can gather you're usually started on a low level and then titrated up if you can tolerate it. Not everyone can tolerate it but those that can, even if it's at only the lowest dose, it really does help with symptoms.

Darkshades profile image
Darkshades in reply toLezzers

Thank you again, you’ve been invaluable to me.

My cardiac nurse really sung Entresto praises and so glad he put me on it. Perhaps at a later date he might try me out again on the next strength ? … maybe the stronger dose was too stribf for me due to my weight loss and if I can get it back it might work better … who knows

Thanks again … I can rest a bit easier tonight

Soppybat profile image
Soppybat in reply toDarkshades

I really do feel for you. Be determined to make them accountable. I am so glad my heart attack happened in Greece on holiday rather than in the UK. I would have been terrified if NHS were treating me…. Far too careless and sloppy in my opinion and rarely called to account

Lizbeth61 profile image
Lizbeth61 in reply toDarkshades

So sorry to hear of your distress, shocking really. Wishing you good health and best wishes for the future, hope things get better soon x

MelB51 profile image
MelB51 in reply toDarkshades

Your case is horrific. As you say, your family must have gone through so much. I really hope you get some sort of explanation from the hospital. I am a great admirer of the NHS and worked for that organisation as a Clinical Scientist for many years but I do know of instances where there are less than competent surgeons, who seem to get away with tragedies/near misses when they should be brought to task. I hope you keep us all updated on this forum. In the meantime, I send you all my best wishes and all my sympathy.❤️

LaceyLady profile image
LaceyLady in reply toDarkshades

You have the right to request your medical records to see what’s been written.

Splodge60 profile image
Splodge60 in reply toDarkshades

I really feel for you and have been there myself Indeed I am still there, false, inaccurate information permeates the liver community so much. I discovered this week, that medics do not just make serious mistakes but, they also tell patients lies I have no trust or faith in any of them. I am going away for a week’s vital break I have no idea if I can manage it. However, my time of relaxation will also be spent giving serious consideration to going to the media with my story. There is nothing to be done to help me now but, I feel very strongly, if only ONE person can benefit from my ‘story’ it then will have been a very useful exercise in helping you, my fellow liver sufferers

I'm sorry. I hope that they see it.

Lezzers profile image
Lezzers in reply to

Hopefully they will

Magicfairy profile image
Magicfairy

I had similar to this, but was a phone call not a letter for my upcoming ablation for AF that I don’t have , it turned out to be someone else’s notes mixed up with mine, it was scary as they were telling me I should be on two meds that I hadn’t heard of, and I should go and have an ecg, my GP sorted it out for me, I got a personal apology from my cardiologist, the specialist nurses at that hospital are really helpful, give them a call, they phone you back the same day and deal with any questions you have, hopefully all this will be sorted out quickly x

Lezzers profile image
Lezzers in reply toMagicfairy

That what I was thinking that perhaps the notes have got mixed up, still shocking though.

Magicfairy profile image
Magicfairy in reply toLezzers

Yes it is, a letter would scare the life out of you

Lezzers profile image
Lezzers in reply toMagicfairy

Kevin once had a letter from a pharmaceutical company saying his name had been put forward by the hospital for a trial as he was on medication to stop fluid entering his lung's!! That was the first we knew about it. We showed the letter to someone at an ICD support group who took it off to ask a cardiologist about it, came back & very gently told us Kevin had heart failure!! They then arranged for the HF nurses to contact us, was a complete shock to us!

Magicfairy profile image
Magicfairy in reply toLezzers

😳, it’s not good is it, no one told me I have heart failure, I read it in a copy of my cardiologists letter to the GP x

Lezzers profile image
Lezzers in reply toMagicfairy

Sadly, that happens a lot!

Darkshades profile image
Darkshades in reply toLezzers

OMG! This is all so shocking. I’m so sorry to hear this.

When I eventually went to a rehabilitation hospital closer to home, a doctor told me that my heart was now worse than it was before the operation. It was me that pointed out that my chest wound surely should have healed by now which they ran blood tests and found I had a very serious infection … they did all they could even with Barts advising but nothing worked. They then returned me back to Barts to deal with it (that’s another horror story too!)

I hadn’t even known I had a heart problem until June 2020

Nettekin profile image
Nettekin

Hi darkshades. So sorry to hear about this upsetting situation. I can't offer any help in terms of the medical issues you have been confronted with,. Milkfairy and lezzers are far more qualified to do that than me. I can, however, entirely understand how upsetting it can be to receive letters that make mistakes. I remember one of the first letters I received after my heart attack referred to me as a "he" (my name was surely a clue?), I was so upset I burst into tears! Now it seems amusing and trivial, but at the time I was so vulnerable it really affected me. I felt as though they had no idea about me at all. I hope you can clear all this up with your GP and if you need to speak to them sooner, then press for an appointment. With best wishes x

Darkshades profile image
Darkshades in reply toNettekin

Thank you so much for commenting x

They really should check their information properly and correctly and right down exactly what was said in their conversations

I just feel so angry about this letter and felt compelled to write back and

Point it all out …. So slap dash and you can understand why people end up having the wrong operation!

Nannyjenny profile image
Nannyjenny

I have had a similar experience. I suggest you write to them listing all the errors and await their response. You really need this documented. Good luck!

I have several errors in my medical record over many years. Even recent reports of conversations do not say what I remember being said - especially by me. One especially which sounded like a rather petulant child. I will write at some point to my GP to try to get the record set straight. A few years ago I spent 3 moths in hospital so I am no longer scared of doctors and am more than happy to call them out. They are, after all, only human it turns out

daisypainters profile image
daisypainters

No resources, but I can tell you that every one of my NHS and consultants letters has had major mistakes - proof that they should bring back secretaries and that no, they can’t do it all. My main NHS medical summary that they send out to consultants with the gp referral even states that I have had 2 children and I have had 3 - by c-section and they are registered with the gp. I have learned to accept it and make sure my gp knows what is correct. He has a habit of booking an appointment if anyone in the family is in hospital now to clarify what actually is going on and what the letter means.

Tink35 profile image
Tink35

Hi you need to contact PALS. Patient liason service and complain.

francesw47 profile image
francesw47

Hello Darkshades. Yours is a dreadful story, but as Milkfairy says, you are strong and here with us to complain loudly about what sounds like pretty shoddy treatment. I too have had heart surgery that went badly wrong and has left me with heart failure. I also had an incorrect letter from the cardiac rehab team containing loads of mistakes and also informed the GP that I had had an operation I have never had! I wrote a cover letter to the GP pointing out the errors which is now on file. It took two years of detective work to find out exactly what happened in theatre - and now I know it all makes good sense and I can deal with it. Obviously I would have hoped for a different outcome, but I cannot change it and now have to learn to live with it and make the best of what could have been a worse story. Lezzers has covered most of the points about heart failure and I have found the support from the Pumping Marvellous Foundation to be so helpful. Its clear, well written and patient led....so it makes sense to people like me!

It takes time to get over the shock, trauma (and I use the word in the correct sense) and the cardiologist said it would take two years to fully recover....he pointed out that my heart has had a dreadful shock and will only slowly regain function. He was spot on, btw, its now exactly two years and I am slowly beginning to feel much much better.

But, you should complain. Really. There is absolutely no excuse for such shoddy reporting - and could have implications for your future treatment.

As for the medication - I too take Entresto. My GP does prescribe, but I understand that many won't as it is so expensive. It is a brilliant drug - if you can tolerate it. Its taken a while (I started taking last November) and it knocked my BP for six. I did persevere and am now on the middle dose (49/51) but with fairly low BP there is not much room to titrate up - although the cardiologist remains hopeful that I may yet be able to. It has made such a difference - as have the lifestyle changes - exercise (walking in my case), diet and rest.

If you get nowhere with PALS (some do, some don't) try Healthwatch or the hospital complaints procedure.

Sorry about long post - I just wanted to say, it takes time to get through this, but you can do it....

Frances

Spangle14 profile image
Spangle14

This probably isn't going to be the most helpful of replies but I think this is absolutely outrageous and we seem to be expected to take these things on the chin more and more these days - it is totally unacceptable. Yes, we are still in a pandemic and hospitals have struggled, but there is no excuse for such incompetence.I am so sorry that you have been through such an ordeal and now this!!! I wonder if it is worth contacting your local MP or seeking legal advice. We are frequently encouraged to big up the NHS and this really does make me wonder...

Good luck in getting answers and reassurance and I'm sorry for my rant - I just felt flabbergasted when I read your post.

Silvasava profile image
Silvasava

Just wanted to add that if you are on Entresto it may help to have the higher dose at night and a lower dose in the morning. Doing it this way has helped me move to a higher overall dose. HTH as I cannot offer any other help for you Dark shades. Just enormous sympathy for all the awful issues you and your family have had to experience.

Scho1 profile image
Scho1

So sorry to hear what you have been through. You have had a terrible time. I have had letters from my cardiologist twice now with incorrect information. It's very annoying and as you have found it can be frightening too. I contacted the cardiologists secretary. I left a message expressing my concerns and left my NHS number and contact details. The secretary did get back to me and it was corrected. If you do not get a response contact PALs. Whatever you do don't give up trying. Good luck. Here if you need a chat.

Wooodsie profile image
Wooodsie

Hello Darkshades, I have read everyone else's comments and support what they say. For what it helps, my 2 penny worth is to advise you request from each hospital and GP a copy of your records NOW, don't allow the opportunity to suddenly have them go missing in part or in whole. Milkfairy advises to ask PALS for copies of your records and notes. Do this before you escalate or there may be a cover up operation instigated.

We are all human, I doubt any of the Drs or surgeons intend for things to go wrong, so it isn't personal and I'm certain they do what they can to rectify any errors. It is the fear of litigation that makes them close ranks, which is a sad state of affairs.

Regarding the letter containing the errors, that is also produced by a human admin, they just do there job, and rarely check the facts.

I'm not excusing anyone, I think you have been extremely unlucky compounded with more bad luck. Well done for coping with such trauma, I wish you all the very best.

Steve

SingingT profile image
SingingT

Hi, how distressing. I feel for you. My first reaction was that they have confused you with someone else. This happened to my sister and isn’t an uncommon occurrence. Sincerely hope you get things sorted soon. Take care. Tx

MaggieSylvie profile image
MaggieSylvie

If that was me I would be furious that people who are supposed to be caring for us can make such basic mistakes and then show such a lack of tact. I would write an email to PALS. It's a disgrace after all you've been through. At least you should get a reply from PALS and it might speed up someone phoning you to explain. Let's hope the admin support enjoys her days off.

Thanksnhs profile image
Thanksnhs

Hi that all sounds an absolute nightmare, bad enough your operation going wrong never mind the rest of it, I had lvsd and I was on entresto but could only tolerate the lowest dose, I got a transplant last year, something went wrong apparently I moved or pulled something and my lung collapsed and I ended up in surgery for 8 hours, but it was nothing compared to yourself, I had more problems after discharge, my gp of 54 years refused to prescribe my meds leaving me in tears trying to find a new practice, I live alone and didn't have the strength to complain, all my letters say op was 31st July it was the 26th, and sometimes the clinic letters don't arrive or don't get to my gp as my meds keep changing it has caused confusion, the admin in the NHS is shocking, nearly a year on and everything has improved so much, new heart is truly amazing and I can't thank the jubilee in Scotland enough, its just everything else has caused me so much stress, I really hope you can get everything sorted out I just didn't have the will power or any help to do it, but they should not get away with it my gp should have been taken to task treating patients with serious illness in that way, I wish I could have done something about it, take care and I wish you all the best with your recovery char

tigerlilygarden profile image
tigerlilygarden

wow thats all I can say. My friend came out of hospital in March this year and the family didn't understand what my friend was going on about until they looked at the discharge papers which was for a differently named person. So hang on till you have spoken to cardiologist.

Kelling profile image
Kelling

I would have thought the most apropriate thing to do would be a visit to the GP surgery asking for an emergency appointment with a doctor - to discuss your heart problem - no more no less information to he receptionist or showing letters or medications. They have no alternative but to give you an emergency appointment "that day" but be prepared to have to wait.

This action will assure you answers. however if you get the slightest smell of a fob off ask for an emergency appointment to see your heart specialist, but hopefully this will not be needed if the doctor you see is any good.

Darkshades profile image
Darkshades in reply toKelling

I didn’t think to actually go to the surgery as feel physically unable and not confident to walk out on my own yet and it’s also uphill 😬

I’ll just have to wait for my booked telephone consultation next week

Retirement65 profile image
Retirement65

Just wanted to say so sorry to everybody on here that have had so much trauma with health issues that should have been managed so much better and clearly haven’t -we put so much faith into our health system and when it fails us we are understandably devastated having worked in general practice I know some of this -we do all make mistakes BUT we also have to make those mistakes right everybody has given so much good advice on here please act on it as this is the only way it’s taken onboard and nine times out of ten will be dealt with I wish you so much luck and everybody else with there experiences that you all get sorted soon and find some peace so you can all recover well take care ❤️

Darkshades profile image
Darkshades in reply toRetirement65

Thank you for your kind comments and to others that have suffered the same x

Harrison4 profile image
Harrison4

I would suggest that you contact your solicitor and ask for advise.

Darkshades profile image
Darkshades in reply toHarrison4

I don’t have one 😬

in reply toDarkshades

Most Solicitor's give you free advice for an hour. Looking at your Post, you MAY have a Case for 'Medical Negligence on a No Win/No Fee basis'. Depends what you want from all of this really!

Darkshades profile image
Darkshades in reply to

Ok thank you and I’ll bear this mind

Like you, I had a bad time with OHS last year. Was put out at 08:46 on 31/7/21 and woke up some time in mid September. Apparently my operation went extremely well, then post surgery I had a Stroke, developed Sepsis and a virus that ate away half my top lip (right side).

I was given a Tracheotomoy and put on an NG Feed system for the next 3 months - though I woke up some 6 weeks later with total muscle wastage on all limbs and unable to eat, drink or talk.

What actually happened during those 6 weeks is still a mystery and only a copy of ALL my notes will answer what went on. I've gained a general idea of what happened (as detailed above) and like you, was not expeced to live, with family visiting to say their farewells.

Like you, I now have AF and probably LSVD, and at this moment in time suffering depletion of my iron stores and have a Ferritine Count of 28 (should be 100+). Whilst I was expecting to be pretty much on the mend by the end of Year 1, a recent check up at hospital of surgery has advised that I can expect to need at least 2 years to recover.

Communication seems to be the big issue, and it doesn't help that my Cardiology/ HF situation is being managed by the hospital performing the surgery, my local Cardiology Clinic, my GP and Community Cardiology Nurses - none of whom seem to do much talking to each other!

The Stroke, Sepsis and damage to upper lip are 'other departments' problems - none of which I have been introduced to - though my GP is now referring me to Maxi Facial (for my Upper Lip Damage) and it has been suggested that maybe I will need further help from various Physio Therapy teams (I still struggle to walk & make use of a wheelchair when out of the house - I have also acquired a speech impediment that keeps us all amused).

My wife has sent some pretty strong e-Mails to various parties with varying effects about communication and the facts as they are being conveyed. It doesn't help that my main heart procedure is so rare that many I speak to locally have either not heard of it or remember it from training and have to Google it - so I am having to instruct them on my situation!

I feel extremely sorry for you with your situation. It is not good enough to give so much incorrect information - lack of information like my case is bad enough, but incorrect information etc is requiring of a letter of complaint, or at the very least to bring the situation to their attention to make sure that no one else has to suffer like you.

In respect of my AF and possible LSVD, apparently I can expect to live a full and normal life without any real impact from them, with the correct medication and lifestyle of course. All I need to do is get all the other issues sorted out first 😆

Yes, I do smile and laugh about it much of the time, because it's the 'British Way'!

Good luck with your endeavours.

Darkshades profile image
Darkshades in reply to

Thank you so much for your reply - you’ve had such a similar experience to me (I’m now following you 😃). I think I saw a comment elsewhere you posted about there’s no where to talk about when their operation didn’t go according to plan and when they’ve had complications after.

Have you thought about opening a FB group for this? I’d certainly would join it 👍 or is there somewhere within here that you can make a group? I’m only new here as such, joining up before my operation as was petrified of being intubated ha! 🙄 if I knew then what I know now, intubation is the least of my worries.

Strangely enough I have no recollection of having any food after the operation (op 7th October 2020) at all up until 24th Nov 2020 (perhaps I was fed like you, but I have no idea as I see no record of that in what information I have received. I presume that due to not having food for 7 weeks caused the dramatic weight loss and muscle wastage of 2 stone. Because I was so weak I couldn’t get myself out of bed and didn’t even have any strength to stand up! I had to have 2 nurses either side and a zimmerframe every time I needed to go to the bathroom and when they started wanted me to exercise and struggled even then. I do see (as I keep going over the information I’ve received that 13/11 there were concerns over me swallowing. When I was transferred to the rehabilitation unit (24/11)near to me I had to go on a special diet of Minced/Moist foods and was watched carefully while I ate and drank for the first couple of days. Like you I too had to and still keep a wheelchair in the car! When I used to have to keep traveling back to Barts to attend the wound clinic we’d use it as I knew I couldn’t walk the distance from the car Park we found and then walk through the hospital. I didn’t actually like being pushed around (first time ever! 😄) but it was quite scary lol, as my husband nearly tipped me out a couple of times and told him we need ‘L’ plates on this thing 🤣

I didn’t know I’d even had a tracheotomy till nearly 2 months later as I happened to see a large dressing on my throat and asked my husband if it had one and he said yes. I did however notice prior that when I had to talk it was quite difficult and was aware of a feeling in my throat - the sound of my voice had changed too and made me not even want to talk

I wasn’t allowed to have any visitors at all due to Covid but as I’ve said my husband was called in had to wait 2 hours as I was still in theatre for my 2nd operation. He was actually allowed into the ICU and sat with me.

Recently on a blood test result it was mentioned that my liver reading was excessively high, so I looked it up and read that this could be due to blood transfusions! (On my notes I see I had “Massive transfusion: total units given peripherally- 10 RBC, 6 FFP, 3 cryo, 3 platelets. Further 4 RBC on CPB … (I have no idea what that all means) but since the op I’ve had quite a number of blood transfusions since

I’m so sorry you have experienced problems too

I wish you well with your recovery again like you I have been told it will be a 2 year recovery

❤️‍🩹

DJK99 profile image
DJK99

Hi Darkshades -

I just wanted to write and firstly say I am so so sorry for you having gone through all of that - and then received a letter with so many dreadful errors. I have had this a couple of times (the letter part) and sometimes it's even a mis-mash of another patient's health issues altogether. I received a letter from Eye A&E after a visit and a copy went to my GP stating I was blind in one eye and about to lose sight in the other... er, thankfully that isn't me. Another one from my rheumy said I'd had pleurisy.. which I really hadn't! It's so upsetting, and in your case so worrying as what they state is potentially very detrimental to your health - but sadly shows how truly stressed, exhausted and utterly overworked they are. However, it's utterly upsetting to receive letters like this. I hope you can get clarification asap!

Regarding your letter - if you do have AF it could be you do, and that you can't feel it. I've had it all my life and I'm 58 now. I had ablation (procedure where they sedate you and pop a catheter up your leg and into your heart to freeze bits of it to stop the misfiring) but this was only when it was very very bad, constant and my heart coming out of my chest and nearly passing out all time. Some people have it all their lives and it just comes and goes.. as mine still does now and then, albeit just for a few minutes at worst - but clearly you need to know if this is YOUR diagnosis and what the severity or otherwise it is. And regarding the left ventricular systolic dysfunction, I don't have this (but I do have mod aortic regurgitation). Again I so hope you get urgent response from your cardiologists to confirm whether you have it and also the level both diagnoses are at. I can see you've had a lot of responses here.. I hope they are comforting and helpful.

Big hug and wishing you (positive) clarity asap.

D

Darkshades profile image
Darkshades in reply toDJK99

Thank you so much for your reply - yes it’s so upsetting when you receive these letters and with errors. I have to say I’ve really started to get annoyed (sign I’m improving 🤣) about them when you’ve told them something and the get it completely wrong in the letters they send.

Another example I have is that I’d got a follow up call (from the ITU) asking how I was doing and the copy letter I received stated I’d lost my job! where in-fact, they’d asked me do I work and I replied no, I had been made redundant some years ago and hadn’t worked since.

The wording on the letter inferred I’d just lost my job!! 🙄(which to me could possibly make them think that’s why I have problems (eg. Wait loss .. etc))

(Unfortunately from what I’m reading now, the diagnosis is Mine ☹️)

DJK99 profile image
DJK99 in reply toDarkshades

So sorry Darkshades...did they come back to you then?

Darkshades profile image
Darkshades

… sorry, but the link doesn’t seem to work

Lezzers profile image
Lezzers

You have posted this product across several of the HU forums. I have reported your profile and the links as spam

GreenMonday profile image
GreenMonday

My husband has had various treatments over the past year regarding his heart and the lack of information has been a constant frustration for us causing lots of anxiety. We also received incorrect letter's from the hospital which caused immense worry. Like you we couldn't contact secretary's to discuss our situation. The only thing we felt we could do was to go through Pals, this worked and we had conversations with a consultant within a couple of days. Like you we were given a diagnosis which due to not being able to initially talk to anybody I turned to Google, this was the worst thing I could have done. This and other groups were far more informative and supportive. I wish you well.

Mountwood profile image
Mountwood

I've read all the replies to your horrendous experience and I won't comment on the medical side. I agree with Woodsie (23 hrs ago) that you should immediately request an up to date copy of your notes. Cover up is one thing the NHS is really good at trying as I know from my own experience. You should also consult a solicitor who specialises in medical negligence. I contacted a charity called Action for Victims of Medical Accidents - this was 25 years ago so I hope it still exists - and they gave me the names and addresses of 2 such solicitors in my area.Keep records of everything you do and say and what is said to you because the people you deal with will not hesitate to lie to you. They will fob you off, lose papers, and delay, delay and delay again.

I have every reason to be grateful to the NHS and we all admire and support it, but the people who work in it do make mistakes. The problem they have is in admitting this. Your experience should be something that never happens, and if it does then it should be sorted without you needing to resort to possible legal action.

I learned that the other side of the NHS is contempt for the victim if a mistake is made. If you do go down the legal route (and it sounds like you really do deserve some compensation) then be prepared for a lengthy experience. To take on the NHS you need dogged determination and, ideally, the ability to type. One reason why some mistakes are never satisfactorily sorted is because it all takes so long, people give up, and the NHS gets away with it.

Good luck, I hope you keep us up to date.

Darkshades profile image
Darkshades in reply toMountwood

Where would I ask for all my notes from? … Barts or my GP

thank you for your reply and suggestions x

Milkfairy profile image
MilkfairyHeart Star in reply toDarkshades

To obtain a copy of your medical notes and test results you need to contact PALS.

Or see below

bartshealth.nhs.uk/health-r...

The Trust has a month to produce the documents and there is usually no charge except if there is a large amount of documents.

Mountwood profile image
Mountwood in reply toDarkshades

Sorry for my late response Darkshades. In addition to Milkfairy's advice I would suggest you also write to the Chief Executive of Bart's. The hospital is his responsibility.Good luck.

bantam12 profile image
bantam12

Taking on the NHS is not easy ! I've been in a dispute with a leading heart hospital for over a year following the death of my husband whilst in their care.If I could turn back the clock I wouldn't have taken this on, it's got to complicated and honestly worn me down, it's just not worth it and there's no end in sight.

I would see your GP or consultant for an explanation and then move on with your life.

Darkshades profile image
Darkshades

I see the person who was spamming the site yesterday has now changed their name … they are Now calling themselves Hidden 😡😡

Milkfairy profile image
MilkfairyHeart Star in reply toDarkshades

Anybody who is removed or remove themselves from the forum become ' hidden' profiles.

Darkshades profile image
Darkshades in reply toMilkfairy

Ohhh I C …. 🤭 … lol I thought they’d set up again under a diff name .. ha! I didn’t know, how embarrassing 🙈

Thank you x

Prada47 profile image
Prada47

Hello

The admin in the NHS is awful. I recently had a clinic letter sent to my GP which was for another patient, it had all his Medication etc and Diagnosis !!!

When I moved house and Hospital the new Cardiologist wanted a Angiogram and just told me they haven't bypassed your LAD (which was in a letter ) only a part of it and missed the diseased part !!! He went on to fix it with stents. So these problems do occur, most seem to be cut and paste errors, but agree not good enough. Probably Staff working on Covid issues under stress !!

Twice Vaccinated to try to Stay Safe

Sue-Ann11 profile image
Sue-Ann11

Nothing to add to the already brilliant suggestions made by other posters, just wanted to send a virtual hug 🤗 Sometimes the NHS is brilliant and sometimes not…it’s made up of human beings…they aren’t all perfect as in every other walk of life, and some need reminding about the effect of their crass behaviours.

Elephant-1 profile image
Elephant-1

I would also contact the care Quality Commission, whilst they won’t investigate an individual complaint. They will include what you tell them when assessing outcomes and ratings. Not enough people know of its existence. Their webpage provides a form for you to provide feedback on your experience. cqc.org.uk/

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