Do people think we should be told by our Consultants / Surgeons if we have any tests that identify us as getting worse, at higher risk? My daughter was due elective surgery for dilating aortic root in March/April 2020 in London. That was obviously delayed and we were content to wait - she wasn't urgent. She had an echo in early August 2020 at our local hospital organised by her Lung Specialist when he said might be her heart rather than her lungs causing her discomfort and fatigue. That Echo was sent to the Surgeon meant to be caring for her heart at the London Hospital. That should have ranked / perhaps did rank her as "P2, Urgent, Needing consideration for surgery within 4-6 weeks". They scheduled her for her surgery in late October and advised her of that but did not tell her the results of the Echo and that they had re-ranked her. London Hospital now saying they had no responsibility to do so and it wouldn't have made any difference if they had. We say they should have told us of the results of the echo and that perhaps there were things we could have done things to protect her. Should they have warned us?
Should we be warned if they see we ge... - British Heart Fou...
Should we be warned if they see we getting worse
I am so sorry for the loss of your daughter.
There is an obligation by medical professionals to make shared decisions with their patients.
In normal circumstances, I would have expected your daughter to have been made aware of her echocardiogram results and change in priority for surgery.
Also informed about any precautions and preparations required.
However 2020 were not usual times in anyway. The Co**d pandemic sadly impacted negatively the care of many patients.
Have you been given any support in making your complaint?
The Trust involved should have given you the contact details of the organisations who provide this support in their formal written response to you.
If you and the Trust cannot resolve your complaint you have the choice to take your complaint to the Parliamentary Health Service Ombudsman.
You can discuss your case with them informally and they may be able to advise you further.
I hope you are able to find the answers you need.
Hi Again Milk Fairy, and thanks for your messages re. my original post and I remember you had good input, advice on my previous posts year or so ago. Yes, the Trust through their PALS, Investigation Team and Senior Management have been supportive and I think, hope genuine in their identification of 'Missed Opportunities' and 'Improvements'. Have been and hope to continue working closely to get things fixed for the future. Also I think they as human beings agree the Surgeon concerned should have warned us but legally they disagree but have asked us to be more specific and particular about what we mean. He had ample opportunity to tell us what the echos meant and he was not answering our emails to him and phone calls via his secretary asking for results and advice. We and the Trust agree C****D was not a valid excuse. Indeed they as a Trust were doing great things through C****D including good mechanisms for spotting those in urgent need for their delayed surgeries - Sarah just did not get looked after properly within that. One big lesson which we learnt too late is for anybody is to ask the Hospital PALS for help if struggling to get medical personnel to answer your enquiries.
Have you considered approaching the General Medical Council?
This situation sounds to be more about an individual healthcare professional's practice rather than the hospital Trust.
Hi Milkfairy, You're right and yes, I have a GMC case on hold awaiting any progress from me also approaching the Police/CPS. However, my post and for us here and for the hospital, I'm wanting to see if our contention that if he knew he should have told us is valid. Hospital currently formally saying no responsibility to tell us and would have made no difference if he had but at the same time they are giving us opportunity to be more specific and particular on that, hence gathering other people's input, and hinting that we should get our own medical input. Cheers, Paul.
So hard to reply to your post, but I wanted you to know that I did read it even if I can't give you any answers.
It sound to me that you are slowly finding out your own answers to your own questions over the treatment of your daughter and your words will haunt me for a longtime as I try to understand just a small part of what you are going though.
My thoughts are, yes they should have warned you about every step in the proposed treatments, possible delays, certain outcomes etc the list is endless, but did they have to? that I do not know the answer to, I am so sorry.
My thoughts and love are with you all over this sad time.
Hi Blue, Thanks for that and hope things good with you. Have had a quick look through your profile and couple of your posts where you looking to help others. And your intro to Nixie and memory of your previous dog. Did I read that right? Sorry if not. We still have Sarah's little white dog, Buddy, and we think he is missing her at times, He is much a comfort and respite for my wife and myself. I even accept he is 'so cute' as Sarah used to say. You take care and again, Thanks. Cheers, Paul.
I’m so sorry for your loss. I just cannot imagine how hard this situation is for you, my thoughts are with you and your family. Absolutely, I feel that patients should be fully informed of all information surrounding their care - this includes getting copies of the test reports, and accompanying consultant notes and letters. We deserve to be fully informed throughout.
Hi Julie, Thanks for that. Had a quick look at your profile and post. Hope things going okay for you. Regards, Paul.
I am so sorry for you and the sad situation you are in. When I sued the hospital about the death of my husband which I believed was caused by negligence my solicitor found both a medical and a nursing expert who agreed with me and if you have not found a medical expert who will consider your case then it might help to do so. The GMC will not be any help. If you take on the NHS you need dogged determination and the ability to type all the endless correspondence. I wish you the best of luck.
I should add that if the NHS was more honest they would save a lot of the money they pay out in legal fees etc. All I wanted at the start was an apology and reassurance that such an unnecessary death would not happen again, but my response to their high handed and arrogant attitude made me even more angry. In the end I won, but the fact that they quietly altered the pathway of care which covered my husband was more important to me than money.
Hi Mountwood, Thanks for that and your points noted and understood. Actually the hospital management have I think genuinely been very apologetic and have been improving things within the hospital and they remain I am sure an excellent hospital and team (mostly). But they have drawn the line in sharing anything on action against the surgeon that was responsible and with the lawyers getting involved am half expecting things to get harder. But even then they actually noted we had not had a medical expert advise us (so hinting that we perhaps should) and that I needed to be more specific and particular in our accusation that they should have warned us, saying (almost repeating said surgeon's own words) it would have made no difference. Am compiling my own summary of medical evidence for the first point and have posted this on here and other places to gather others' thoughts on whether we should have been warned. So for me the apology and improvements from the hospital are there but I strongly feel that where people have really failed us they should at least accept they were wrong, perhaps then be given a chance to correct themselves, but if not be held accountable. Hey, I thought Matt Hancock (among others in the hierarchy) was mainly to blame until I read the hospital's draft report. And yes, am hoping we can draw a line under the legal fees and put more into getting the NHS managed better and fully supporting the front-liners there. You take care and again, Thanks, Paul.
YES YES. I lost my elder sister to and aortic aneurysm, because they were ‘watching’ it get worse. She was a tiny 4’ 11” woman and they were using measurements for men! My mother also died with an aortic aneurysm! It seems it’s inherited condition so both me and my sister have been scanned. Apparently they won’t scan you past 65!!!! My sister was 70.
my youngest brother died by neglect and negligence in July and I’m waiting for an inquest, not an aneurysm but suffocating
Hi LaceyLady, Thanks for that and had a quick read through your profile and history, you've certainly had your own history not hinted at in your reply to me but hope things good for you. And then Wow!! seeing your second reply about your brother, really sorry to hear that and yes, I would say chase for knowing the what's and why's. And if necessary the who's. You take care! Thanks, Paul.
I’m being monitored for an ascending aortic aneurysm that doesn’t quite meet the threshold for surgery, and I’ve met people who have survived aortic dissections and also people who have lost family members, so your experience is close to home.
I have also struggled with issues around reporting of scans and transferring data and information from one NHS trust to another. At one point, I did launch a ‘complaint’ through PALS as friends told me it was likely to be the only way to get the system to work in the way that anyone – including those working in the system – would think it should. I am afraid they were right, even though the two trusts involved are both major London teaching hospitals.
There is a particular issue with echos, which are very good at assessing valve function but can be seriously misleading – I have direct personal experience of this – when it comes to measuring aortic dimensions and rates of growth. I also have experience of two professionals looking at the same scans – CT and MRI in my case – and coming to very different conclusions about what they show. But this doesn’t justify failing to answer questions, share information, or engage in discussion. I have had two experiences of professionals going out of their way to give me credible and timely assessments of scans, and am profoundly grateful for them having done this. I’ve also had the opposite ... which was one reason I changed consultant ...
In an ideal world, especially where people with Marfan and other high-risk genetic aortopathies are concerned – there are 11 validated markers in the genetic panel (which I know about, because I have been tested and am negative on all of them) – I would hope that surgery, especially when it is as low-risk as PEARS, could be delivered in a timely way to everyone who needs it. I know the NHS isn’t in that place.
That said, I can’t disagree with you that the team could and should have responded better to your need for information. When aortic dilation becomes symptomatic, the risk level escalates regardless of the measurements. They could have discussed how your daughter’s blood pressure was managed and also perhaps looked at how to ensure there would be no avoidable hold-ups on the path to surgery.
On a daily basis, I’m balancing risks in relation to levels of physical activity needed to maintain my physical and mental well-being against the risk that one false move could make me dependent on an unreliable ambulance and emergency medical system for my survival and for the quality of my life after that: neurological issues after dissection are not trivial. I currently believe my medical team are as good as they get, and that if or when I qualify for surgery – hopefully, PEARS – I will be able to benefit from it. But there are no absolute guarantees for anyone in this situation.
If it would help to talk to other people in the same situation, there are two aortic dissection charities in the UK: Aortic Dissection Awareness UK and Ireland, and the Aortic Dissection Charitable Trust. I’ve found both of them very responsive, supportive and realistic. Very best of luck in getting what answers you can, and I hope we can all work together to make things better for others.
Ah - on the point about difficulties of measurements of aortic roots from echos - Yes, agree and indeed Daughter's consultant at Papworth in her 2019 annual check explained in depth about those difficulties as part of explaining that she, being new to the team and specifically good at imaging, wanted to do a review of all of my daughter's past scans. However, she said that yes, it was time to be planning for her surgery and referred her to Surgeon there. Yes she had Marfans and so yes, she had reached the 4.5cm for surgery to be indicated. Papworth doesn't do PEARS so surgeon there referred us to the London Hospital. And yes, the London Hospital has mentioned the difficulties in interpreting echos, different machines etc but I stop them there with, "Your own people have said 5.5cm on the echo from local hospital should have indicated P2" and whatever the technicalities of echos getting that result should have got some attention from the surgeon concerned and we should have been told!" Your point about becoming symptomatic is also crucial. Sounds like you are well informed for yourself but please - make sure you follow that through with effective action to protect yourself. Again, please take full care of yourself, and again PM if you would like more. Thanks, Paul.
Julian, Thanks for all of this, and yes have been with the Aortic Dissection Facebook pages albeit too late for my daughter 🙁. And just last night had a really helpful talk with one of their seniors. Looked at your profile and other posts. You say 4.5cm ?4 years ago? If you don't mind me asking - What about now? How old are you? Any progress on you getting your PEARS? My wife beating herself up for even mentioning PEARS but as I keep responding it wasn't going for PEARS that cost our daughter her life. And on that night it was losing the option of the PEARS and deciding the type of valve we might need for the MVR that was occupying my daughter's mind not a regret on PEARS. PM me for any additional info, advice I might be able to offer. Thanks, Paul.
Hi Paul - thanks for that, and very glad you've made the contact with AD people. I'm 63, and my aorta was 4.8cm earlier this year (by echo). I'm due my next full (MRI) scan early next year. I'm told I'll be offered surgery at 5.0cm, at which point I would push for PEARS: I've met the surgeon I'd hope could do the operation on me. I'm fully aware that in case of emergency, I might well be faced with the same options your daughter was. I'm on low dose irbesartan - an 'off-label' prescription, supported by my consultant - with no real evidence it will protect me. PEARS, on the other hand, does have evidence. But the one is cheap, the other quite costly, so I completely understand why I am waiting and will have to wait some more!
Aw in so sorry to hear about you lossing your daughter 💔. I can't understand why you weren't fully informed of how bad her health was 😔.
Hi Yumz199725, Thanks Yumz ... and indeed that's what we're trying to get to the bottom of. We know what was not done but not why?
Sorry for your loss. I had an aortic dissection whilst on a plane landing at Bournemouth airport in 2017. I was taken to Royal Bournemouth Hospital A&E, then to Southampton Hospital for emergency OHS. I still have annual CT scans so am under So'ton. At the end of June this year I had a mini stroke and was treated in Bournemouth Stroke Unit. I also had an Echocardiogram there. I was absolutely shocked that none of this regarding the mini stroke or echo report, was forwarded to So'ton as I was still under their supervision re the dissection and valve replacement. I would have thought this should have been automatically done! I sent a copy of my discharge report from the stroke unit and the results letter of the echo from B'mouth, to my Cardiac consultants team in So'ton. Surely, (although different authorities), as B'mouth knew I was under So'ton still for the dissecton etc they should have updated them re the mini stroke and findings? I was amazed this didn't happen which is why I sent So'ton copies re the mini stroke.Something is terribly amiss with the system that they don't communicate these things.
Best wishes
Denise
Hi Denise, Thanks for this and I remember you provided some good input to me a year or so ago. Actually, the Bristol lung specialist organised and sent the Echo report to London in early August and London admits a delay in uploading it onto their system to last few days August but also that contrary to their 'system' that was without the customary Consultant signature. No excuse there as Sarah and I were both emailing Surgeon and his secretary and phoning the secretary through September asking about the echo results. In their latest note, the hospital said the Surgeon did review that echo on 3rd September and so scheduled her surgery for 28th October. Yes a nurse did contact Sarah and told her the date but that it was very tentative, date could slip. No mention of the echo result and re-ranking. Should Sarah have been told about that? Hope things good with you, You take care, Thanks again, Paul
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