My daughters surgery has been cancelled within 12 hours of admission for the second time just now - AIBU to think this is so cruel for her to keep being subjected to?

[jugof]

My daughter was booked to have an operation 6 weeks ago, was cancelled the night before and it has just happened again tonight, lots of preparation and sacrifices (cancelled driving test, delaying new job start, not booking trips with friends that would clash etc) husband works away and has come home twice for a week at a time, doesnt get paid if not in work, I am self employed and have twice booked out time to be caring for her in recovery

We were heading out to get her something nice to eat before nil by mouth started, bags packed (mine and hers as ill be staying with her), dog sitters sorted etc etc

Its such a horrible, helpless feeling, even though, the reason (not enough intensive care beds) is understandable, I cant comprehend keep going through this over and over again.

Do you think theres any chance they will take seriously the inconvenience and emotional upset to a young girl and put something in place to have it rebooked quickly or are we just back in the queue?

Presumably everyone who needs intensive care afterwards is also hugely inconvenienced by cancellations, so I would have thought you'll be back in the queue based on medical need. It sucks though 😢

I'm sorry. It is an awful position to be in but as you said, it is understandable. Just a few emergency admissions to PICU and that would've done it.

I really hope that she can have her surgery soon.

Im sorry I've been in this situation many times and its awful the cost, the time of work, childcare, anxiety, emotions. Its really hard x

How upsetting for you all.

I imagine that they will prioritise her surgery as much as possible over others with the same degree of urgency and who haven’t been postponed twice already, but as bed capacity runs so high it doesn’t take much for planned space to suddenly be taken.

Fingers firmly crossed for third time lucky xx

I'm really sorry, that's awful, my dad similarly had an extremely important op cancelled 12h before 4 times and he really struggled so I imagine its very hard for your DD, I hope she gets what she needs very soon x

The actual number of ICU beds is really low compared to other countries and this is the impact. I’ve been cancelled twice on the way in and really feel for your daughter and family…it’s so difficult when the beds are needed for unpredictable emergencies

How old is she and what's the surgery for? It's upsetting for her. Might help for context.

You won’t go to the back of the queue. Cancelled surgeries should be rebooked within 28 days of cancellation date. It’s a national KPI

Can you give any indication how long she’s been waiting and if it’s a routine/urgent referral

I am so sorry. It must be frustrating and soul destroying.
I had an ambulance diverted to me and after a night in resus, I had a life saving procedure that somebody else probably had their elective procedure delayed for.
I feel desperately sorry for whoever the ambulance was going to and the person who got bumped down the list, I hope they are ok. I am so, so grateful to be alive. It is awful that these choices have to be made.

Her driving test or yours?

Realistically she’ll be no higher in the queue than anyone else who's been cancelled. Also unlikely to be treated differently to someone who was cancelled with slightly longer notice.

The scheduling will be based on best available given the requirements for the particular surgery and fitting those to staff and facility availability.

To minimise future disappointment, recognising that it’s heading into winter which is generally more challenging on capacity for everything. It may be helpful to treat it as a ‘planned for’ rather than ‘confirmed booking’ date until actually been admitted and seen the surgeons smiling face. So take a more contingency plan ‘what we’ll do if it goes ahead’ view than assuming it definitely will.

Just want to say I absolutely understand that if a child is sicker and needs icu that absolutely they should have priority - she is 17 and it’s for a spinal fusion for severe Scoliosos and “rib trimming” can’t think of the correct term!

She will be triaged on medical need ….it must be an awful time for you all

Oh that’s so disappointing for you both! Hospitals absolutely hate cancelling people so close to admission (and if it’s this short notice they’ll have been working all day to prevent it).
you don’t go to the bottom of the list for being cancelled the day before, you retain your position of priority based on clinical priority and length of time waited. There used to be a metric that we had to get patients back in within 28 days but I think it’s 6 weeks now.
bed pressures at the moment are horrific. If you’re in the north west, speaking from experience ICU beds in the region are particularly challenged with high levels of unplanned admissions and elongated lengths of stay.

you can certainly put in a PALS concern about the impact and effect it’s had on you all being cancelled twice but it won’t change your position or get you in any quicker sadly.

hoping your daughter gets her procedure soon

We're in the North East

It is really really shit but then as you know only a finite number of beds and the sickest will take priority. Doesn't mean it isn't really hard for you all though. I hope she gets her surgery really soon.

Usually it will be for an emergency or much sicker child OP. I understand it's frustrating but they're not doing it on purpose.

Yes, I know this and have stated it twice, I absolutely understand and feel grateful we are not the family with the child who has the most urgent need for an ICU bed, that goes without saying - but it is valid to have some feelings around it, especially seeing my daughter so upset - she's really scared for the surgery and aftermath and it takes its toll preparing for it to be let down twice in quick succession.

My child was the one rushed to intensive care at 4am last year and then had two emergency surgeries within 2 days followed by another 2 emergency surgeries in that same month. I know for a fact that it likely caused chaos for scheduled surgeries and of course he was rightly the priority but it's going to also be upsetting for families when their child's surgery is cancelled even though they know it's for a good reason and there's nothing wrong with feeling that way at all.

I've also been on the other side, with my child having scheduled surgery and though he didn't need intensive care on this occasion, his surgery was cancelled until the following morning because an emergency surgery came up. I completely understood but it was frustrating as well.

You can feel both upset and frustrated that the surgery didn't go ahead but also thank your lucky stars that it isn't your child who suddenly needs an intensive care bed.

Hopefully 3rd time will be the charm xx

Or sickness of the HCP/consultant/anaesthetist etc….
Loads of people off dick in hospital (NOT arguing that this is a bad thing!M) but it’s putting another layer of pressure on the whole system.

It used to be that someone much sicker went first. I’m not sure this is still the main reason now

My DSs OHS was postponed and cancelled 3 times over 2 months and we ended up being put on ward waiting for 4 days for an ICU bed to become available as we had travelled far for his surgery.
Ask if you can stay or if they think it's possible so your DD is ready and waiting asap.

I'm sorry to hear this OP. If it is any consolation, having been the ICU Consultant who has had to make the "no bed" call on many occasions and the theatre anaesthetist pushing for a ICU bed for a patient on many others, the staff do understand how traumatic it is for patients and their families and it is never a decision we make lightly. I am sure that every possible solution will have been explored before your daughter's surgery was postponed. Nobody ever likes to put patients and families through something like this and from an operational point of view it's bad for the hospital too as it often leaves a lot of resources unused. There will almost certainly have been a lot of robust discussions between the involved clinicians and managers before the final decision was made. One of the key factors in the decision will have been your daughter's safety. Nobody likes to cancel an operation and we do recognise the distress it causes, but often it is better to have a longer wait and the optimum care when the operation does go ahead than to proceed when there's a risk that the level of post op care that's needed might not be possible.
We know it is awful for families like yours and staff do really try to avoid multiple cancellations but demand outstrips resource so often, particularly in the Winter. I really hope your DD gets her surgery very soon and I am sure her surgical team will be making every effort to facilitate that, but at this time of year I'm afraid it could happen again. Pressure on critical care services in the Winter is immense I'm afraid. I hope you get good news soon though.

Oh wow, I'm so sorry @jugof that is bad news! I have had this happen with several family members, and several friends, and also my DH. His surgery was put off twice in 2023. (Third time lucky!) Each time it was only put off to about 3 weeks later though, but he had booked the time off work and someone was already rostered on to cover his shifts. He had taken unpaid leave, so he lost 4 days pay, THREE times. It was tough going!

Both times it was cancelled, we got the call 8pm on the evening one time, and then 7am on the morning of the op the next time. We were only 15 minutes away from leaving the house for the hospital the second time. (Then the third time it wasn't cancelled!)

As @AgeingDoc said above though, they don't do it for shits and giggles, it is out of necessity, but it is so frustrating and upsetting isn't it? When you get that 'cancellation call' you start fantasising that they will ring back a couple of hours later and say things have changed, and it's back on!

I really hope it's rescheduled for next week, and it's done then! And I hope your daughter's surgery goes really well.

Hi, sorry to hear that. My Dh had 10 cancellations in a year for heart surgery and one meant being on the way to the operation after anaesthetics' had been given. Sometimes we both ended up being depressed. I hope her operation is sorted quicker than that!

Does she definitely need a PICU bed? We now nurse scoliosis repairs on the wards. As long as they are assessed as suitable to do so. (Very strict criteria for it)