How can hospital administration be so bad? Someone please explain it to me.

[HospitalHassler]

I'm waiting for surgery as I have severe endometriosis, a large ovarian cyst and complications due to adhesions. As is common with many endo sufferers, it took me years to get a diagnosis (thanks to my GP and that good old IBS diagnosis), before a trip to A&E finally got me seen by the right people. I had surgery last year, but the cyst has returned and I've been referred to an endo specialist for extensive surgery.

I'm in constant pain, it impacts my life daily, and I'm nearly 40 and have been trying to conceive for years. So it's a shit situation which I'm desperate to sort out.

But I'm being held up and tripped over at every hurdle, seemingly by a combination of incompetent staff and a clunky administration system which has allowed me to fall through the cracks. My experience so far:

Cockup #1 - Secretary panics, delays my referral, and then forgets to send it

I saw the consultant in August, and was told I was being immediately referred. After several months of patiently waiting, I called and asked a couple of questions about my referral. The secretary panicked, and decided that my questions warranted a further appointment with the consultant (they didn't), told me that I had to see the consultant because he needed to talk to me about something (he didn't, she totally lied) and that he wouldn't send my referral until he had seen me (another lie).

I complained to the hospital and spoke to the consultant, who agreed with me and apologised that the secretary was a 'low grade staff member who didn't understand the questions I was asking'. Which begs the question how the fuck was she able to make decisions which directly resulted in further delays to my treatment.

I was then told that the hospital 'forgot' to send my referral to the specialist. The consultant had in fact dictated my letter within days of seeing me, but that secretarial staff never typed it up and it didn't get written or sent until I reminded them to do so.

I finally saw the surgeon in December, and was referred to a second surgeon for investigations (I need multi-disciplinary surgery so both surgeons have to see me). I saw surgeon #2 in February. I was told that all that remained was for surgeon #1 and surgeon #2 to liaise and come up with a date.

Cockup #2 - Fallen to the bottom of the in-tray?

I have been calling regularly to ask for progress, and there has been none. Until a couple of weeks ago. I spoke to yet another secretary who reviewed my notes, put me on hold for a few minutes, then came back with "All I can say is I'm so sorry, we'll be writing to you asap". I took this to mean that there had been a cock up, they had forgotten me and were about to rectify that immediately.

Cockup #3 - You've done WHAT with my file?

I waited for that imminent letter, it didn't arrive. So I called again... spoke to a different secretary who told me that they were trying to get my case reviewed but were having trouble locating my case notes. Yes, my case file was currently missing. They. Had. Lost. My. File.

I immediately contacted the customer complaints department, spoke to a wonderful man who made it his mission to find my file. He found it within a few hours. It was the day of the Jr Doctors strike, and I apologized to him for hassling him on what was surely a busy day. He said that it was a bit bonkers that day, but he couldn't do much about it, so he was happy to be able to focus on the things he could help with and felt that helping me was a job well done. I could have cried.

Cockup #4 - it takes how long to sign a form?

So my file has been located and I spoke to the secretary again this week. She said all that was needed for the consultant to sign my form and then it could go to the team to schedule a date for me. Yes that's right, it has taken 2 months (and counting) for a consultant to sign a form.

Then she launches into this spiel about how there are thousands of other women in the same position as me, and some of them have waited years for diagnosis (you don't say!) so I just need to be patient!

Please could someone come and explain to me how hospital administration works, how files can go missing, how a secretary can make decisions on whether you ought to be referred or not, and how it can possibly take so long to get a man to sign a form? And can someone please explain how the listing system works - is there a queue, and will I go to the bottom of it as of next week when they hopefully, finally, receive the instruction to put me on the list?

I'm exasperated. I am extremely grateful for the NHS and I have no doubt that many of the issues are caused by under-resourcing and clunky systems (I work in civil service, I get it). I think if I could just understand how the system works, it might help me calm down a little.

[PerspicaciaTick]

The NHS is very good at gaslighting patients into thinking it is their own fault that their treatment isn't happening as they expected. The implication is always that the patient is too dim, too confused, wasn't listening properly, is panicking, is too demanding etc. etc. and this is why treatments are postponed and referrals delayed. It is never the institution's fault, always the patient's.

[HospitalHassler]

I think you've hit the nail on the head there, I'm being gas lighted by the secretary into believing that I'm being unreasonable for having to ask where my appointment is 2 months on. The fact that I got the exact same script from her on 2 occasions "well there are 100s of other women in the same boat you know" suggests it's her standard approach.

Thanks to this thread I realise it's not unreasonable for me to expect to have been listed by now, in fact they are in clear breach if the 18 week pathway rule, and I'll be saying exactly that when I call them again tomorrow.

[stopfuckingshoutingatme]

Kudos for mamadoc for their Honesty
Op just keep at it - keep chasing and keep a diary -I do hope you get your treatment soon X

[HospitalHassler]

Update - I rang the secretary at the beginning of the week. She said "Didn't I tell you to give it a week?" I said yes, I was just checking whether the Dr had signed off the necessary paperwork yet. He hadn't.

She said "Well it will take at least a week for them to list you once they receive the paperwork". Yup, I know, I was just ringing to put the necessary rocket up your arse to get the dam thing signed love, given that it's only been sitting on your desk for two fucking months.

She told me to ring back in a week. I said I would. And then I lodged a complaint with the complaints dept. I detailed the date of my referral (October!) and all the dates that I have rung since.

And I'm going to ring the appointments clerk tomorrow, because they've now had 2 months and one week to receive the paperwork, so i don't think it's unreasonable to expect it to have been signed by now!!!!

I have been patient, I have been polite. I have apologized for 'hassling' with phonecalls. And I have reached the end of my tether.

Weekly phonecalls from now on until I get my date.

[HospitalHassler]

I rang the appointments clerk today. No sign of my file.

She told me that it does take longer to arrange the multi-disciplinary surgery that I need, which I fully understand. But I'm not even on the waiting list for it yet.

My file has been sitting on a desk, waiting to be signed off for over 2 months.

So I rang the patient liaison service again to ask for help, but they said they're dealing with my case and haven't got anything to report yet.

Can someone please tell me whether the secretaries will hate me for ringing them on a weekly basis? Will I be penalised for it, like subtly shoved to the bottom of the pile? Is there anything else I can do?

I'm considering contacting my old consultant to originally referred me, to see if he can follow it up - is there any point in doing that?

I cried all the way to work. I'm at the end of my tether.

[Turbinaria]

I would contact the trust's chief executive and the CQC with details of your patient experience cc in both Consultants and the PAL manager. It's time to go to the people who have the power to get things moving

[TreaterAnita]

That's utterly ridiculous OP. I would complain again and tell them you're going to take legal advice. In reality there's not a lot that a lawyer could do in your situation (though you have certainly experienced additional pain as a result of the cock up, and probably loss of some chance of a successful pregnancy) but generally those are rocket up the arse words, so it might help you. I'm really sorry they've made such a mess of it.

[GooseberryJam]

That is beyond poor. Ring PALS again and say that if they can't get back to you with some practical help within 24 hours now, your official letter of complaint will be emailed to the chief exec of the trust that same day. They never want you to officially complain and that is often the point to press home. When my elderly mother was being poorly dealt with in hospital, I emailed the chief exec after repeated attempts to address the problem on the ward. The next morning I had a phone call from the head of complaints, desperate to be helpful. Summon up your anger and get tough now. Sadly it tends to be what works.