Surgery cancelled again. WIBU to turn up to the hospital regardless?

[Wndof]

I've been waiting over a year for life saving surgery. I was finally given a date for 31st August then they changed the date twice, switching my appointment with somebody else and then telling me they'd made a mistake with dates. Finally, 14th September (so tomorrow) was confirmed and I've undergone all of the pre operative tests and assessments, made arrangements for the children, XP secured the time off work.. only for them to text me just now and say the surgery has been cancelled due to a bed issue.

I called the admissions coordinator who has been absolutely terrible throughout and told him that I plan on turning up tomorrow morning and won't be leaving.

I read on here thats what somebody's father did in the same situation and he got his operation.

WIBU to give it a go?

Sorry if I seem dramatic, I just cannot endure this utter shit any longer 😭

My dad had similar with heart surgery - 4 cancellations before he was admitted. The unfortunate truth is the majority of (in his case) heart patients are admitted as emergencies as they have heart attacks and need seeing too immediately its more rare for people to present prior and have surgery scheduled....I imagine its the same for aneurysms, people get admitted and need surgery as they rupture rather than "finding out" in advance and being scheduled.

Honestly OP, I can understand why you are so frustrated and upset- anyone in your shoes would be. Is there no way you can go private? Credit card, remortgage? Possibly of going aboard if its cheaper?

I know you shouldn't be paying out of your own pocket as you do via tax etc but seeing people's awful experiences makes me tell my kids (14&11) get private healthcare soon as you are adults. It's not a new thing my SIL died at 40 from BC that was missed several times and she wouldn't pay privately even though she was very well off and I think she would be here today if she had. (This was under Lab government before it turns into some political debate). Nhs has been abused for decades and only when you use it do you find out its a shit show.

Credit card isn't a possibility as I don't have good credit. I don't have ownership to remortgage as I rent. I'm at the mercy of the NHS unfortunately 😔

Oh OP I'm so sorry you're going through this. I have no magic advice I'm afraid but you're not alone. My son, 6 years old at the time, was scheduled for a right hemispherectomy (he has drug resistant epilepsy) and it got cancelled and rescheduled 4 times due to bed shortages. All the while he's having up to 40 seizures a day, with rescue meds given and admission to hospital at least once a week. I was losing my mind. We never got our rescheduled surgery, he ended up in status epilepticus for over 3 hours one day, no amount of rescue meds working, had to put him in an induced coma where he was still seizing on and off. They did an emergency hemispherectomy the next day. There are always beds for emergencies. I thought he was going to die. I'm still so angry about it and that is after I complained and recieved compensation. What I wanted from my complaint was for it to not happen to anyone else, but sadly I think it's only happening more.

I hope you get your surgery soon 🤞

Can you get transferred to another Trust? I read somewhere that its possible as obviously some are in demand then others? Maybe ask your consultant his honest opinion as you don't want to be at the bottom of the list elsewhere. (If you do manage to get hold of him)

What about going a&e to another hospital that does that op and having rupture symptoms? I know as horrible as that sounds but I won't lie, I would give anything a go. It's OK for people to say hold tight, I've been near death after multiple organ failure and being turned away several times before everything packed up - obviously I'm OK but it's exhausting having to be chasing all the time.

All that is doing is wasting time for someone who may of ruptured and clogging up a&e 🤷‍♀️ she would be consulted, scanned and there would be no rupture. Total waste of resources.

rupture symptoms would be hard to fake since she would have to present with altered state of consciousness

Soundoflettinggo, that's so sad. Your poor little boy 😔 I hope he is OK now?

I spoke to PALS in person at the hospital and all they're able to do is chase up admissions for me which she tried to do there and then but they're not answering the phone, or emails.

Radio silence from the consultants P.A too.

My DH had a brain tumor and despite it making him blind as pressing on his optic nerve he had his operation put back 3 times as he needed an intensive care bed for 2 days after operation and emergencies kept presenting. On the third attempt he was in hospital, in gown and had pre-med, then a motorcycle emergency came in and he was sent home again. He finally got it on the forth attempt and just before Covid first hit. He was discharged after 7 days instead of 12 as they told him staying in the hospital he risked catching Covid. Going in and sitting there won't help you if there is no bed.

I work in a hospital and don’t recognise the dire conditions people are talking about here. The hospital where I work is in a small town but still carries out elective and non elective surgery ( though mostly elective).
my husband needed a hip replacement and it was 6 weeks from seeing the GP to having his op.

Then you and your husband are most fortunate.

honestly, what do you expect PALS to do? Kick out patients who are in much more emergency situations? It’s rubbish and sorry to hear, but they have to prioritise based on clinical need. You sitting there will not help

And the consultants PA isn’t responsible for bed allocation, which is clearly the reason why it’s cancelled

I don't know what I expect PALS to do. All I know is that my life is at risk and I need my surgery. Wouldn't you try every avenue you could?

I have asked whether being transferred to another trust is possible in my email, no response yet so I'm not sure what the options are for that.

The nurse would know what the bed status is or if any ITU patients will step down to the ward , or if any patients from the ward will be discharged home. All the consultants push for their own patients to be admitted but there are not the beds for all of the patients.

I don’t know how it works although it’s certainly a possibility. However I would add that Neuro services are normally in the major hospitals with trauma centres (due to the nature of neuro surgery) therefore your likely to encounter similar issues.

The significant issue here is the requirement of an ICU/ critical care bed. This won’t change regardless of trust.

King’s and some of the other London hospitals have a lot of bed pressure due to having a large a and e and being a major trauma centre. Also they get patients needing to be transferred over from local hospitals as an emergency.

I’m sorry it was cancelled. Such a scary condition to live with. For those not being very sympathetic, I’m sure if they had a time bomb stuck to them they would be desperate too. I hope your emails work and a bed is found asap for you and this time your surgery goes ahead. I’m thinking of you. Keep us updated and look forward to hearing you’ve safely come out the other side of this

If you want to be seen in another trust , you can ask your GP to refer you. This add further to your wait. Speaking to PALS and Neuro surg secretaries to keep reminding them you have been cancelled / are waiting is your best bet.

The only thing in addition I think you haven’t considered is getting a consultation with a medical negligence solicitor and seeing if they have any advice? I don’t think it’s likely to be negligence (in legal terms) at the moment but they might have some ideas, or things they’ve seen work. You are likely to have to pay though. Maybe if they wrote a letter setting out your case and the consequences, plus the hospital’s duties this might help keep your case at the top of the pile.

Honestly I think that what is most likely to happen is that you’ll get a new date, and if you try to keep yourself at the top of the pile it will happen, but I know that it’s so difficult when you’re in the waiting stage.

I was told when pushing for dates to make yourself known - secretaries etc. Keep phoning and re PALS I was also told that they need to know what is happening to patients in the Trust. After zero contact with the department, after a complaint to PALS we finally got a phone call and contact. People saying why complain, what's the point - there is every point when you are frustrated, requiring life saving treatment and want communication. You should not have to keep chasing for appointments when you already been cancelled many times. I would try every avenue I could. This is not unusual now.

I'm definitely going to keep calling and emailing every day, talking of which the admissions coordinator told me this morning that he'd call me back once he had spoken to my consultant.. but hasn't. That's another phone call to make then.

All hospitals are under the same pressure so don't think it will help

Lying about rupture symptoms definitely won't work as surgeons won't operate without a ct and can see very clearly the bleeding tht occurs with rupture so they'll know she's lying...which won't do her credibility any favours

King's is a regional trauma/neurosurgical centre so has a lot more to deal with beyond little dghs

The hip replacement can't have been recently most patients I'm doing are at the 2y wait mark. After 18m with my nan on the list and being told at least another 6m we gave up and paid private

Do you not think the surgeons that deal with ruptured aneurysms daily know what the consequences of potential delays maybe without a lawyer writing threats about something that is yet to happen? Please don't waste the consultant time having to reply to such letters. If I'd spent the night begging for a bed on behalf of my patient to then receive some solicitor threat it would be somewhat disheartening. Noone is doing this out of spite to the op. It's crap everywhere and I just wish it was better

It was in December last year. I just wanted to make the point that not all hospitals have such long waiting lists. Maybe we are lucky here.