Who else waiting too long for time critical surgery?

[TooLate4Daughter]

Just lost our 29 year old daughter to an aortic dissection. Surgeons that night did their best I am sure but she was awaiting aortic surgery delayed since March - too long! How many others are out there that are not getting their needed surgery? Examples would be appreciated with condition, location, delay? We understood the postponement during the first wave of COVID and front-liners have been doing a great job. However, have Government, NHS, and hospital managements been reinstating and ramping up time critical surgery during the lull as they needed to to save lives?

[meadfoot]

So sorry to hear of the loss of your beloved daughter. Such a dreadful situation and loss of a young life. Sending you my condolences and a huge virtual hug. I don’t have any personal examples but know of plenty who have suffered.

[Milkfairy Heart Star]

Covid is casting a long shadow over us all.

Many operations have been cancelled and other Cardiovascular care has been affected.

The National Institute of Cardiovascular Outcomes Research (NICOR) published a report in September about this very issue

medscape.com/viewarticle/93...

The NHS has been frantically trying to catch up on cancelled operations only for the second wave of Covid to arrive.

It is all a sad desperate situation for everyone concerned with the tragic loss of your daughter.

I am so sorry and I send my heart felt condolences.

[TooLate4Daughter in reply to Milkfairy]

Thanks for link to report - very much appreciated. Hope some clearer strategy and action plans are going to come out of it.

[080311]

I can’t imagine the pain you are going through, to lose a child as got to be the hardest grief to bare. It’s the wrong way round. The situation you have found yourself in I really have no answers we all know that the NHS staff have been working so hard to try to save as many as they can.

I send you my sincere condolences.

Pauline

[TooLate4Daughter in reply to 080311]

Thanks - and yes, I know front-line NHS staff and those supporting them properly in admin and management have been doing great work. Do wonder about Government and NHS / PHE Management more generally though. Think we have been lacking proper pandemic management planning and action plans - from before the crisis, in the early stages, for the lull and now as 2nd wave develops.

[080311 in reply to TooLate4Daughter]

Must agree, though I live in Scotland so we are a wee bit different up here.

[Cliff_G in reply to 080311]

Pauline, maybe a wee bit, but I am not sure we are doing a whole lot better in Scotland. My own post-op monitoring on my aorta has been delayed and I know of many who have had serious delays on planned ops, and some other appalling cases, both aortic and otherwise.

[080311 in reply to Cliff_G]

Hi, I still haven’t had my echocardiogram due last May, to check my replacement valve, but what I meant was because we run are own health system somethings are different. Pre the pandemic I get more checks here than relatives in England.

Of course there have been serious cases of delays I wasn’t saying there wasn’t.

[Cliff_G in reply to 080311]

Yes, it's true that assumptions are made based on England without realising NHS Scotland is separate (NHS Wales & NI too)

[Rose54]

My heart goes out to you no parent should ever have to suffer the pain you are going through at present

[waylay]

I'm so sorry

[Mikedabike]

I thought long and hard about replying to this thread. This is such a good forum and I was fearful of making waves. My heart goes out to you for your loss. I have the utmost respect for the majority of NHS staff, however I do think that the government response combined with GP and NHS senior management has been poor after the understandable initial response when the virus first surfaced. I have no doubts that the Covid wards are overrun and the staff are working their hardest under very trying circumstances. What I fail to understand is how the rest of the NHS seems unable to function as normal. From my own experiences it is now virtually impossible in my area to get a face to face GP appointment. I am seeing frail and disabled people forced to wait outside the surgery in freezing cold and rain with no seating or shelter. They are then let in one by one at lengthy intervals. Whenever I make my regular visits to my local huge hospital for my INR checks I am witnessing quite simply a ghost town of a hospital. Empty corridors, empty waiting areas, it just seems so, so wrong. I genuinely fear for people who are not getting their required diagnoses or treatment. My sincere condolences for your loss.

[TooLate4Daughter in reply to Mikedabike]

Mike - I totally agree with all of your points, most poignantly about being fearful of 'making waves'. Daughter and I since July were increasingly worried, disappointed, angry she not being dealt with, not being talked to but we too felt a bit 'fearful' of making waves, being thought a pest, saying more clearly what we thought and expected, not feeling we could demand more. One of our 'too late for us' lessons for anybody else - if not getting any joy from your Consultant or Surgeon, use the hospital PALS for 'advice and liaison', they are Patient Advice and Liaison Service - they are there to help you not just to process complaints. And if that doesn't work, call Sir Simon Stevens (NHS CEO), your MP, Matt Hancock.

[Cliff_G]

Oh no, my heart sinks when I see yet another story like yours. SO sorry for your loss, my heart goes out to you, especially as I am personally more than familiar with aortic emergency.

You will find many others to talk to on our Facebook group Aortic Dissection Buddies UK&I, certainly with similar stories, and there are a fair few of us being delayed on monitoring etc due to COVID. The Facebook group is at m.facebook.com/groups/Aorti...

We (Aortic Dissection Awareness UK&I) have been keeping an eye on any reduction in standards on aortic diagnosis and surgery and it has not been encouraging. Some of the big centres are actually doing more operations, but these are emergency ones taking cases off other hospitals who have closed, otherwise there's a drop, in especially elective surgery. And almost all of us are being delayed on monitoring post-operation, and quite a few with delayed elective operations.

My condolences again

[TooLate4Daughter in reply to Cliff_G]

Thanks for that Cliff, have requested to join. Would be very interested to help collate any evidence you guys have on undue reductions in surgery. Yes, COVID obviously decimated the system during March, April into May but with the lull and the right approaches we could have, should have seen a return to and ramping up of time critical elective surgeries from June onwards. Needed to get as much in as they could before the always expected 2nd wave took away beds, equipment and front-liners back to COVID again. Sounds like from what you are saying they didn't? Who was holding back? Not the medical teams I suspect. And why? Yes need to protect the medical teams but was that the only reason for the slow and too little return to the theatres? Or am I being unfair? Trying to be objective.

[Milkfairy Heart Star in reply to TooLate4Daughter]

The British Cardiovascular Society published this report.

britishcardiovascularsociet...

Also have you contacted the Society of Cardiothoracic Surgeons?

The BBC Hospital series recently featured the story of the Royal Free trying to return their renal and liver transplant services in the summer as well as the impact of Covid.

The repeated issues were the lack of Intensive care beds and staff being off sick or self isolating meaning operations even for patients with cancer had to cancelled again and again.

The Government passed the Coronavirus Act 2020. It gave new powers to the government. NHS resolution is involved in the changes to negligence claims

resolution.nhs.uk/services/...

It is an awful situation for everyone concerned.

[TooLate4Daughter in reply to Milkfairy]

Thanks for that Milkfairy, Cardiovascular report a useful interesting reading though a little concerned about relying too much on data, remote working etc. but at least these guys do emphasise the need to be alert to and respond to the need for physical presence and face to face attention - for tests and for consultations. Good study and set of recommendations - any clear Strategy and Action Plan agreed with NHS yet? Didn't look into it in detail but changes to the Negligence System understandable - 'We can't be expecting medical staff to go outside their norms to help us all only to be hammered by the lawyers when things don't go right - as long as its not down to incompetence or corruption. Neither of these generally apply to the Front-line and let's not go to where it does apply in this forum. Cheers,

[Cliff_G in reply to TooLate4Daughter]

Hi. Great that you're joining. Best thing is I can talk to some of our committee members who are in contact with those doing the research. If you post this in that group, or PM me here if you like, it'll be picked up.

[TooLate4Daughter in reply to Cliff_G]

That could be good - awaiting acceptance into group.

[Canbe]

So sorry for the loss of your daughter l feel your devastation for your loss please reach out to possibly the Good Samaritans or friends for help and to talk 😘

[Pinky1985]

I’m beyond sorry for you this should never happen in this day and age may she be in peace bless her this is tragic you are so kind raising awareness at such a terrible time for yourself Sending you my deepest sympathies xx

[SerenK]

my sincere condolences upon the death of your daughter.

[LiveToRide]

Im so very sorry for your loss

Im currently awaiting bypass op, they cant say when they will restard ops, I am just assuming they are doing their best

[TooLate4Daughter in reply to LiveToRide]

Hi LiveToRide, Please please don't assume that - you have to check. Check they have you in their system for review and ranking. And then whether ranked as urgent or not urgent and whether risks of delaying surgery outweigh those of COVID. They should have a system for doing that now. Then - How do you monitor yourself for deterioration needing re-ranking? What can you do to look after yourself.? And watch out for any other seemingly unrelated medical conditions that could cause complications. Use your GP - they are still supposed to be there for us - you may need to update them on what your Hospital is saying. They don't always see what each other are doing and saying. And if you feeling bad and not sure - get a face to face - remotes are working great but nothing beats a doctor seeing you in person to spot and diagnose things you may not get to talk about over the phone.

[Montmax1]

So sorry for your loss, I have just lost my son due to heart failure, he had been in hospital after having a defibrilator removed because it got infected, he was sent home due to covid as they didn't want to put him at risk.He was admitted back into hospital but moved onto wards with covid even though he had already been tested 6 times and they were all negative, due to us not being able to see him we had to trust what the hospital was telling us They then sent him home again even though he couldn't stand up and when I rang the ward and spoke to the Doctor all he said was he was medically fit to return home. He was admitted again the same day but to a different hospital . My daughter who is a nurse on NICU got a phone call to say he wasn't well and to go up to the hospital because it was only a community hospital and there was no Doctor on at night they transferred him to A and E He was on there for 15 hours, and only when my daughter argued with the consultant to read he's notes did they eventually do something he was transferred to CCU at 5.00pm on the Friday and we got a phone call at 5.20 to go straight to the hospital as he was fading fast he died on the Saturday at 2.00pm. Cardiology were absolutley disgusted at what had happened. Sending big hugs your way x

[TooLate4Daughter in reply to Montmax1]

Wow! Really sorry to hear this, Montmax1, but also perplexed. From all I'm reading and hearing from hospitals, GPs and other players in my questioning of the system around my daughter's case this should not be happening even with COVID as it is now but then again I'm not believing all they tell me. Where are you, when was all this?

[Montmax1 in reply to TooLate4Daughter]

Sorry I am only just getting chance to reply, He was in Royal Blackburn Hospital admitted 24/11/2020 died 12/12/21

[JJL15]

I’m so sorry to hear of your loss of daughter. Such sad news.

My echo was cancelled in March 2020 due to COVID which is understandable, I had to chase my cArdiologist for another appt in October because wanted to see if my valve replacement would manage another pregnancy. I had my echo done on 4th Jan and now I’m having urgent CT angiogram Monday and follow up with surgeon in London Tuesday in view of doing surgery ASAP. I wonder had I had my echo sooner would I already have had my surgery . It’s the what ifs. Totally appreciate COVID is a huge problem in all hospital but I’m sure critical care and surgeries will still be taking place. I worry all the time now since my ECHO something May happen to me , with the worry of homeschooling my 5yr old and caring for my disabled daughter who’s 3. Thankfully they are seeing me next week and hope for surgery pretty quickly by all accounts.

[TooLate4Daughter in reply to JJL15]

Thanks. Sorry to hear your echo wasn't so good but sounds like you're getting pretty good support since then? Where are you, which hospital looking after you? I called up Papworth and asked for my wife to get her echo mid December. Hers was needed to monitor a new concern raised in 2019, had been due in April but understandably we were not called for it then and we hadn't chased for it during the summer. She got her echo yesterday and that indicated nothing urgent which was a relief especially considering what we are going through having lost our daughter. For you it sounds like you were not suffering any particularly adverse symptoms if you went mainly to check your heart okay for 3rd baby. To find you actually had a serious problem must have been a real shock! Illustrates that people really do need to be getting their echos in even if not suffering deterioration in symptoms. So for everybody, maybe not now for some hospitals that may not be able to manage it (Addenbrookes and Papworth have been great for us throughout all our trials btw, heartfelt thanks to them !) but once things settle, get your planned and advised but delayed echos in even if not suffering symptoms. And you do need to ask - do not wait for the hospital or your GP to contact you, the system just does not work well enough to rely on that.

[Hidden]

I am so sorry to read about your loss. That truly is devastating! The way things are at the moment scares me. I've been waiting for an angiogram since August, I've been having chest pains since spring/summer. I ended up in A&E over Christmas, initially they said heart attack based on blood tests as my Troponin levels were high. Later they said they'd only risen by 1. They sent me home with a GTN and diagnosis of Angina, but no scan to prove it. I'm now on Briscopol, Statins and aspirin and I'm questioning everything. My GP said they'd be stopping Angiograms because of covid. But what pees me off is that I did a few calls and if I go to the same local hospital privately I'd be seen in a week or two. Seems so unfair.

[TooLate4Daughter in reply to Hidden]

Thanks, SloopyLJ, Where are you, which hospital? August - just before the curve of COVID picked up again through September? NHS vs Private? Agreed, we had somebody bragging to us in December would take months under NHS but got one in a couple of weeks privately. Is becoming / should become more of an issue especially where using NHS facilities. It's one thing where Private hospitals not having to make facilities available to NHS under new contract but don't understand how local NHS hospital can't do it for NHS patients but can for private patients? Have you checked that with your Consultant - GP may not be quite right?

[Prada47]

Hello Slightly off topic but !!

Check any letter you receive from the Hospital

I have access to my records through Patient Access. I saw a letter from Cardiology Clinic to my GP. My Name, My Address, My Hospital Number, and My NHS Number only problem is it wasn't me, it referred to another patient so I now know what is wrong with him and what medication he is on etc I do believe I am in a slightly better condition than the poor soul who had been seen .

I see my GP picked it up straight away and e mailed the Hospital, what concerned me was if I should have needed A & E and someone just gave it a quick look over it could have been quite serious !!!

I have also got a letter from echocardiology " You are on our waiting list for a follow up Heart Scan, but due to circumstances outside our control , the waiting time is currently longer than usual "

It has been cancelled twice now.

So I got another letter " Unfortunately you failed to attend your Echocardiogram appointment" on the date was a blank space Contact us within 7 days if you wish to still proceed and we will reinstate you to our waiting list. So I phoned oh ever so sorry we are having Staff difficulties due to Covid.

So I have another appointment in 10 days time at the Ambulatory Cardiac Clinic for the Echocardiogram.

Good Job I can stay Relaxed !!!!

I understand things are difficult But really minor basic checks before sending out letters.

Hands Face Space Vaccinate to Stay Safe

[TooLate4Daughter in reply to Prada47]

Hi Prada47, Not really off topic! All experiences shared helps. These things shouldn't be happening, are dangerous and we do have to be watching out. Shouldn't be happening - why is it happening - who is not doing their job properly? Its all very well the doctors, nurses, consultants, surgeons, their support teams doing great things but they need proper support from management, advisors, NHS contractors, software developers etc to get the management systems and tools right. Do need to keep calm for the sake of the heart but everybody, stay alert and yes, you have to keep these things on track!. Everybody - Suggest send such letters back to hospitals with a simple note saying why they are wrong and asking them to look into why the errors are occurring. They then have your input to help them fix the problems? Ever hopeful of improvements to how things are ....