After waiting since Jan for my urgent priority surgery for.my recurring aneurysm, I got a phone call late on a Friday to tell me I was booked for Tuesday.
I spent the weekend getting ready cleaning the house, and mentally I found it tough. I had a conversation with my hubby about my wishes if things did not go to plan and even wrote a letter to my son, in case the worse happened. I know it might seem a bit over the top but just the way my brain works, I am positive about the outcome of the surgery but I am realistic as well. Having survived the rupture nearly 2 years ago, I know nothing should be taken for granted.
So yesterday we got up at 5 am to get to the hospital on time, it is an hour’s drive away. We sat in the admissions lounge watching all the other patients being called in and nothing happened for me. After sitting there for nearly 6 hours my surgery was cancelled as there was no bed. No idea when it will be now and even if it will get cancelled again.
I feel really nauseous today, I am guessing it is the drop in adrenaline and lack of sleep, food and fluids yesterday but I am now thinking that I might just.not have the surgery at all, and just take chance with it all. I have to start another complaint with the hospital and I am just tired with it all. I do not have the energy to fight anymore.
Thank you for reading this, I feel a.bit better now I have written this down.
Hi Sue. I completely get it. There’s a lot of mental preparation for any operation but one where you’re not sure you’ll get through better than you are is something that you do a lot of preparation for.
And I think doing that sort of preparation is normal and necessary. I’ve got a document called [Dad’s] Rules Of Life which I started to write when I first suspected I had something amiss with my blood vessels. I’ve dumped fewer practical things into that but I’ve got all of the things that I’ve thought of so far about who I am, how I’ve approached different things in life, my philosophy, exactly for sharing with my son.
As you say, it’s good to write the frustrations down, express it.
Christ on a bike! Give yourself a couple days, rest, take some walk abouts and hydrate. When you’re feeling better i bet you get a bit peeved and that’s perfectly understandable. I’ve had some long delays because of other people having the need for emergency surgery but at least I was called up or one of my surgeon’s team members came and told me. One time I was hanging out in the procedure room all hooked up with the IV. Part of her team and I were listening to music, joking around for about a hour whilst mine was finishing up with a little 5 year old boy. The first thing I asked was if he was okay. I didn’t ask what he had needed emergency surgery for because I didn’t want to go down that rabbit hole.
The audacity of your hospital not telling you what was going on is unacceptable in my book. A very strong complaint needs to be made. They may not have had a bed but they certainly should not let you sit for six hours without some form of communication! Regardless if you decide to have another go at getting your aneurysm occluded, a hospital should never treat a patient the way you were. If no one lodges a complaint, there’s nothing written down. As a Social Worker, we were taught if it’s not written down it didn’t happen. Hospitals are the same way, it’s one of the reasons we all need to check our notes from specialists we see. It’s one of the positives of having a portal, we can check the notes and immediately let the person who wrote them know there’s something wrong which then becomes part of our medical record. Asking questions is also a great benefit.
Dad always said the only thing guaranteed to us is death and taxes. I don’t see anything untoward about telling your husband your wishes or writing a letter to your son. Another thing you might want to think about is making recordings about your life for him. I wish I had recorded more of my parents stories. I did interview a woman for a college class for several hours. When she passed away, I was able to pass it on to her adult children. They said it was an unexpected gift and every time we saw them, they would tell me they’d never heard the stories I had to ask about and it helped them understand their mother better. Having been in my field, I’ve seen a lot of death. I’m sure each child would’ve wanted something to hold on to knowing how much a parent loved them. For some of those, nasty custody battles ensued. Grandparents actions can be very surprising. Grandparents have no legal rights to children in North Carolina and they can become afraid that they’ll never see their child’s child(ren) grow up. I would encourage you and your husband to have a visit with a solicitor and get your plan in writing.
Please keep in contact with us. We’re always here. Big hugs!
Phoned PALs again to complain and they were shocked. The ironic thing was while we were waiting the TV in the admissions lounge had news reports about a huge report in NHS maternity care and it’s failure in the UK , with alot of the criticism being lack of communication with patients about their care. The woman I spoke to at PALs was laughing as I told her this and then she apologised for that.
I am appalled by treatment of patients in the UK but I do not know what the answer is. It is not just a case of throwing money at it, the system needs a reboot and staff need training on how to deal with patients and to imagine what it must be like to be vulnerable. I think that is something that is generally lacking now.
Well done. The Patient Advice & Liaison Service is the only place to go when this happens. When I first had a diagnosis of a brain arteriovenous malformation (for which we have a separate support forum) I had to wait a whole month for an “urgent” MRI and then a further month for the report to go back to the consultant, all the while I was expecting to go pop in much the same way as you brain aneurysm people worry. It only moved forwards when I rang PALS. So it’s a necessary evil.
Who knows what the underlying reason for you being bumped from surgery is but I do think the NHS is constantly challenged by limited funding. Some of that limit probably drives a bit of efficiency – a drive to see as many patients with the funds available – but then sometimes it seems that that constant pressure is too much for the staff and they have to just ignore the fact they can’t help everyone. I’m sure they have to numb themselves against the failures else they wouldn’t look after the ones they can look after as well as they should. New money can just flood back into inefficiency. Somewhere there’s an appropriate balance but it is awful when you’ve psyched yourself up for possibly-not-making-it and then get let down like that. That’s as rubbish as rubbish gets.
If you don’t get action pretty quickly, I’d put the heat on again quite soon. Nobody should have to go through this.
I am just so so so sorry to hear this development. I cannot even begin to imagine how frustrating and disappointing it was for you and your family!
I am hoping that PALS can get to the bottom of this and get it scheduled for you soon. I am sending that energy out into the atmosphere for it to happen! Well, that, and for you to get your own tv spot as to what happened to you as that will help add a little heat.
Please continue to keep us posted and vent as you need. We are here for you!
I am so extremely proud of you for calling PALS and being heard! Well done you! So did the person say what the intent on addressing your issue will be?
I’ve been following your NHS system because of you! I sure see a lot of news articles complaining but no one is suggesting how to fix it. Perhaps Parliament needs to hirer an efficiency expert to overlook everything and a forensic accountant. I often see where neurosurgeons aren’t making the money they should, apparently they feel it’s not worth it to practice. I also wonder if there’s still some backlash from the pandemic. There were a lot of people in the medical field who quit during that time here and I’m told there’s still a need to fill some of those spots. My PCP just told me at my last visit, they’ve finally hired enough RN’s. They don’t hire CMA’s, just 4 year RNs and up now since another university is offering a four year program and the community college stopped their 2 year program.
Let us know whenever you get another appointment. I’m keeping you in my daily thoughts…
Hi everyone thank you for your message I really do appreciate you all and your messages of support .
No news from PALs or the hospital in general but I know from previous conversations with them that they meet on Friday to decide who is on the surgery list for the following week. So I am hoping to hear something tomorrow, I will let you know.
I have contacted my MP because this is a ridiculous situation it is awful for any elective surgery to have this wait, but for urgent surgery just seems totally wrong to me. So we shall see what he says and what he can do, I have asked him to investigate how many “urgent” cases have to wait at my hospital and how many across the UK. Rather than just telling him it is awful thought it might be more productive to get him to do something which might benefit patients in general. So I will let you now how it goes, but apparently he receives over 300.emails a day so I am not holding my breath for any there either.
Good for you letting the proper folks know. Ok don’t laugh, we’ll do laugh. When I read MP, I thought why is she contacting the Military Police​. Then I thought it might be a Medical Provider so of course I went to the Internet and discovered, nope neither of those, must be your Member of Parliament! If your politicians are like ours, they’ve got staff that reads those and brings some to the attention of the boss, others they just send a form reply. Basically a file 13 which is a trash can. You might get a better response if you can do a face to face with him or a staff member. People often times get heard better when they’re seen. Our politicians occasionally meet with their constituents in the district, sometimes they have what they call “town hall meetings” which is over the phone and you get put in a queue to ask a question. In my experience, it’s much better to actually see them and push your point. Doesn’t mean they’ll do anything. Word of warning, I made my Federal Congressman mad on one of his town hall meeting calls and I never got in the queue again. To be honest, he asked me the question and I replied. Not my fault he didn’t like my answer and it pinned him. He should have known better, we’d met a few times up in DC for Lobby Day. I haven’t met the new one, I am avoiding politics now on advice of BH and friends. But do be careful, my stent has allowed me to be a little more careful with what pops out of my mouth but not where it should be when dealing with them.
. Then I thought it might be a Medical Provider so of course I went to the Internet and discovered, nope neither of those, must be your Member of Parliament! If your politicians are like ours, they’ve got staff that reads those and brings some to the attention of the boss, others they just send a form reply. Basically a file 13 which is a trash can. You might get a better response if you can do a face to face with him or a staff member. People often times get heard better when they’re seen. Our politicians occasionally meet with their constituents in the district, sometimes they have what they call “town hall meetings” which is over the phone and you get put in a queue to ask a question. In my experience, it’s much better to actually see them and push your point. Doesn’t mean they’ll do anything. Word of warning, I made my Federal Congressman mad on one of his town hall meeting calls and I never got in the queue again. To be honest, he asked me the question and I replied. Not my fault he didn’t like my answer and it pinned him. He should have known better, we’d met a few times up in DC for Lobby Day. I haven’t met the new one, I am avoiding politics now on advice of BH and friends. But do be careful, my stent has allowed me to be a little more careful with what pops out of my mouth but not where it should be when dealing with them.