They've pushed my son’s urgent surgery back again and I don't know what to do

[Blericka]

My son is 7 and he has Tetralogy of Fallot. He had his first repair as a baby but we were told he’d need another operation when he was older because the narrowing of his pulmonary artery had come back and he was struggling more and more. He gets blue lips when he’s running around and he tires so quickly compared to his friends. The cardiology team said this latest surgery was urgent and it’s written all over his notes that it’s life limiting if it isn’t done.

We were meant to go in last week for the surgery. We were admitted onto the children’s cardiac ward the day before so they could do all the pre-op checks. He was nil by mouth from 2 am, put in a gown, and the anaesthetist came round to explain what would happen. Then about an hour before they were due to take him down, another anaesthetist listened to his chest and said he sounded a bit rattly. He’d had a cough the week before but no fever and he’d been well in himself. They said they weren’t happy to go ahead because of the risk with the bypass machine and lungs not coping. I do understand that, I don’t want him put under if it’s dangerous, but I was floored when the surgical coordinator came in and said that because he wasn’t fit on the day, he now goes back to the bottom of the surgical list.

When we were first put on the list they told us it should be about a 12 week wait which felt long enough as it was, but at least we could count down to something. Now it feels like we are right back at square one.

This has already happened to us before. Back in June we got as far as being admitted and then they cancelled on the morning of surgery because there weren’t enough PICU beds. Before that we were given a date and then told a few days before that it couldn’t go ahead because of theatre staffing. Each time we steel ourselves for it, arrange time off work, organise childcare for his sister, travel down (we’re not local to the hospital so it means hotels and everything) and then it just gets scrapped. My son gets worked up too, he’s old enough now to ask questions and he keeps asking when the doctors are going to fix his heart. He even packed his favourite teddy and a book into his hospital bag and now it’s just sat there by his bed because he doesn’t understand why it didn’t happen.

I phoned the booking office today because I couldn’t stand not knowing and I wanted to check if we had a provisional date. The woman on the phone said quite bluntly that because he was marked down as unfit for surgery on the day, the system automatically drops him back to the bottom of the list. She said we just have to wait to be contacted again and there’s no guarantee when. I honestly felt like crying, I don’t understand how a child who was listed as urgent and life limiting can just be bumped down like that.

The consultant said clearly to us in clinic that without this surgery his heart will get weaker and he is at risk. So how on earth is it right that he’s now looking at months of waiting again. It feels like we’ve been completely forgotten.

I’m seriously thinking of putting in a complaint through PALS because this just doesn’t feel safe or fair. But I’m terrified it will backfire and we’ll be treated like awkward parents who make a fuss. I know the nurses and doctors on the ward are doing their best, they were lovely with my son, but the system feels broken. I can’t sit back while his health gets worse.

Would I be unreasonable to put something in writing to the hospital now. Or do I just wait and hope we get another call soon. I honestly feel at breaking point.

Have you phoned the consultants secretary?

Yes put in a complaint absolutely so that when your son is well he should be prioritised for surgery not put to the bottom of a pile again, that makes no sense.

Obviously with the risk to your son any sign of infection needs to be seriously considered as part of the surgery but this surgery needs to happen.

I dont have any advice as I've no experience in this area but my God, I'm so sorry this is happening to you. It's appalling. The only thing I can think of is getting onto your consultant and pleading because surely this is vital. I have had an incredibly sick baby who sadly died in his first week of life and like you, you fight tooth and nail for your children. Thinking of you xxx

I would echo the comment above about phoning the consultants secretary about this.

Another vote for contact the Consultant’s secretary and ask for a phone call with the Consultant. Consultant will not be managing the list directly and may not realise your son is now at bottom of list but will be able to request your son is prioritised if needed.
Please try this first before you complain as complaints generate a huge amount of work and stress and this may be relatively easy to resolve.
Really hope they fit your son in very soon.

Echo the others, please don’t complain at this stage, OP.

It will be easier and quicker, and much better for your relationship with the consultant, to frame this as a question.

And it sounds like you have a very valid question about what will happen next.

Definitely call the consultant’s secretary (leave a message if no answer, they often won’t pick up but will get back to you). Alternatively, email them. Ask for a phone call with the consultant to discuss the situation.

The consultant will absolutely want you
to understand what is going on and why. And if the waiting list manager has misunderstood the situation then that will come out too.

Good luck!

Certainly contact your consultant’s secretary and then follow up (in writing) what is said and copy PALS in. I personally would frame it as ‘ I am incredibly concerned that this urgent surgery has now been relegated to the bottom of the queue and bearing in mind the life limiting condition I am requesting that this decision is reviewed urgently as son is deteriorating’.

Im so sorry this has been your experience, it must be incredibly stressful.

I cannot imagine that a consultant couldn’t sort a patient into the next available slot if he deemed it appropriate to do so. Obviously, they can’t cancel someone else’s also life saving surgery to give you that time. But as a team, they can make decisions on individual patients. My cancer surgeon booked me in for life saving surgery without even telling me that’s what we were doing, because it was the last slot available for the month and he knew I wanted it done asap. I got the call with the date before I even had the appointment with the surgeon and he explained why when I finally did see him.

But I was very assertive. I called and emailed secretaries regularly with updates and new symptoms and made myself obviously someone who wouldn’t fall off the list. It meant they had to keep discussing me at the MDT and bumped me along. It probably saved my life and I’m very grateful.

I second ringing the consultant’s secretary, absolutely everything you’ve said is valid and completely understandable, it’s not being awkward at all. Then go to PALS if it isn’t resolved, you won’t be labelled an awkward parent, any parent would feel the same and I absolutely guarantee you wouldn’t be labelled, the staff would understand your point of view

My 9yr old has Truncus Arteriosis which is on a par with ToF everytime we've had to go home for a number of reasons I have always phone his cardiologists secretary to relay what we were told by admissions on the day we had to leave.

His cardiologist is always hot on his case and makes sure we are copied in and updated on the next surgery, they really try to find any kind of opening for urgent cases and can also refer to different hospitals if necessary, so please please please contact your childs Cardiologist ASAP.

Get to the consultant anyway you can. If you ring switchboard you should be able to say 'put me through to so and sos secretary' then say : we know it was postponed but in the last 10 days we feel like hes deterioted can we speak to the consultant - a telephone consultation would be fine.
I would bet when you get to the consultant and talk to them they will be like - nope it's not going to happen like that. Unfortunately alot of it is down to this nowadays. Lots of consultants get a name for being the bolshy one - not sure they care as long as 'their' PTS are seen..

That’s terrible OP, no advice but can imagine how scary this must be!

This

What you need is information which you can only get from consultant.
Get your questions prepped:
How long after chest rattled is dc deemed clear for surgery?
When they say its urgent, is it urgent as in needs done this month or within the next year.

I feel for you op. Being given little or useless information does not help you at all

This is awful, I have no practical advice other than what everyone else has said about the consultant, but do have an older child with a heart condition and can only imagine how upsetting and stress. Seems absolutely bonkers that in case of cancellation through no fault of any of you he goes back down to the bottom of the list rather than into next place down in accordnace with priority of need. Unfortunately nowadays with the NHS (and schools, and everything else) its he who shouts loudest.

Really hope you get the consultant to reprioritise him and you get a new date soon. Thinking of you all, its very draining and upsetting trying to advocate for your children in the face of mindless beauracrcy, I know.

As others have said, please contact the consultant’s secretary, and if you don’t get a satisfactory response that way, I’d go PALS (or whatever it’s called now) at that point. The consultant should be able to resolve it though, if you’re getting a computer says no type response from admin staff you need someone clinical to look at the situation and say no that’s not right, it’s an urgent surgery. I really, really hope you get it sorted!

I'm so sorry this has happened. My daughter also has ToF so I completely understand how stressful this is. I agree with the previous posters, try consultants secretary first and then if no success contact PALS- they don’t view that negatively.

I’m not sure what hospital you’re under but ours has an active charity and Facebook group who are helpful in providing contacts if you don’t have them. So could be worth looking at those.

In addition to contacting his consultants secretary you can also speak to PALS for advice & support without initially framing it as a complaint (not that you don’t have every reason to complain).
PALS are there to help & raising your concerns, including deterioration in his stamina levels should give them what they need to raise questions & ensure that you don’t get forgotten.

Your post has caused me to flashback 18 years. My son (now almost 30) was born with severe Aortic Stenosis and was in for an op age 12 - it was, at that stage a 'managed' condition (he had open heart surgery and a valve replacement a year later).
We were actually on the ward in the waiting area (all pre-ops done) when they cancelled his op and sent us home, again, emergency admissions/lack of picu beds was cited.
I really feel for you - it is the worst thing to have an important, nescessary operation cancelled - you psyche yourself up so much for it.
The only thing that tempered the feeling of anger and distress was when another parent in the room (whose childs op was also cancelled) said ' I pity more the parents whose child is the emergency admission'. In all honesty our son had also been that emergency admission 12 years earlier.
Speak to the consultant/cardiologists secretary - ours was brilliant, and helped us so much to navigate what was a really difficult time..

I have absolute sympathy for you. I am in a similar situation although my condition is not life threatening. I have now been waiting two years for an urgent knee replacement. (Knee collapses causing falls, caused a broken ankle earlier this year). I have been scheduled for surgery and then because I have a chronic lung condition they reject me at pre-op. I am then instructed to be re-referred by my GP. My lung doctor (different hospital) is appalled by this as they have an arrangement to admit me for IV antibiotics before ANY surgery and the Orthopaedic surgeon knows this.
So in essence this is the same issue of being dropped to the bottom of a waiting list when deemed unfit for surgery. They seem to be incapable of running a waiting list in an efficient manner. I would be VERY interested to hear which hospital OP is dealing with. Relatives report that their local hospitals allow patients to put off offered dates if it clashes with a holiday or other event.

Phone the consultant or their secretary. Email them. Keep going until you get an up date. This is ridiculous. They should be dropping your son to the bottom of the list if you show you can't be bothered to attend like won't cancel a holiday or a birthday party, not because he is ill.