AIBU to be kicking up shit in the doctors?

[Lovelyjubbbly]

since 2021 I’ve been suffering stage 4 Endometriosis and a Endometrioma Cyst (chocolate cyst) last measured 6 months ago my cyst was sitting at 30CM.

I will include a couple of photos.
im on every medication that you could think of for pain relief.

This all started due to my section when I had my child the surgeon left tissue inside of my that was suppose to me taking away a trainee was also involved in this at this time.
( I didn’t sign anything for a trainee to be involved in my surgery) it was an emergency c section.

Now I am regularly at the doctors see my GP trying to have this sorted I know there is a waiting list but I am absolutely sick and tired of the NHS they are saying they are still working behind from covid patients in the gynaecology department for surgery.
now I’ve been on the waiting list for surgery since 2021 I called last week to the secretary of the surgeon that is doing the surgery and she told me I possible have another 76 WEEKS until surgery is due.

how can I possible deal with my life is turned up side down I no longer can do anything with my kids or have a life it’s completely destroyed me in every way.

TBH, ranting and raving no matter how right one is, is never the way forward.

I worked in the public sector for years and when someone started shouting down the phone I gave them a chance to tone down as I'd just taken the call and needed to find out whats what, if they continued I ended the call telling them they can call back when they had calamed down.

When it happened face to face, I'd offer to leave their home and did leave. In all of the years I worked in the public sector all of these people apologised to me and stated that they were actually just angry about the coucil, and waiting lists and recognised the fact it was beyond my control

Most of us found that being shouted at made it more difficult to concentrate and help a person.

I'm unhappy with the NHS but I never rant etc at a single person as I know it helps no one

Yes, it is hard, but stay calm and check where you can complain and take it from there

@DistinguishedSocialCommenator
I haven’t Shouted at anyone on the phone or there face or shouted at any Gp or anyone involved in this .

I’m very frustrated you have no idea the amount of pain I’ve been in since 2021 it’s pain that’s so unbearable that I can’t even walk I feel like someone has kicked the living hell out my ribs stomach full right side of my tummy.

it’s so easy for you to say that when you don’t know what I’m going through I can’t even sleep at night with the severe swelling I’m bloody bleeding through my stomach instead of having a period it’s horrible I wish at times I’d be better of not hear than rather be going through this I’m useless for my kids there’s nothing I can do with or for them

Emergency c - section is not routine surgery.
Every consent form says they will be no guarentee that surgery will be performed by a particular surgeon.
Nearly all emergency c sections are performed by registrars ( who are trainees) ie training to be consultants. They are qualified to perform surgery and will have had competencies assessed formally .

Having said that OP , you are clearly in a lot of pain, and I’m sorry to hear you have so long to wait. This is a secondary care problem. Your GP can do nothing. Go to PALS and write a formal letter of complaint regarding the wait for surgery.

Ask your GP for an NHS Choices Choose & Book referral to your nearest private hospital. The NHS pays for all your treatment, but you get treated just like a private patient.

This is excellent advice

Ask to take a cancellation too
I'm on a referral for severe endo and it's a years wait time for all local places here
I ended up in a&e due to the pain and it's actually pushed me up the list so I'm being seen next month

I never said you did. Please read this post in conjunction with my previous one.
I was making genral comments about if people do shout at people and not only have I experienced it, I've seen it happen at hospitals as well and it never ends well for the patient/customer.

I thought you were in England and suggested you contact PALS. So I'm
only trying to direct you on the right path as frustration/suffering etc can at times make us say things that we later regret.

Therefore look up PALS in the UK and how they help and see what the equivalent is in Scotland. Good luck and I hope they move you up the list.

They won't touch endo with bowel involvement - I was sent to a private hospital v quickly but he said they can't do it as it needs a bowel surgeon in theatre and I had to go back to the NHS

op likely needs an endometriosis specialist centre which are all NHS

OP is in Scotland and may not apply. But really good point. I've already mentioned PALS but not sure if they have this in Scotland

Re cancellations - I have rang departments daily and have got moved up the list for different items. Also ensure they have the best contact numbers.

There are always cancellations as people are too unwell to attend and ome have other reasons so best to phone every do oten and ensure they have your correct contacts. This applies to any/all medial appointments.

I know it's unfortunate and doesn't help you but I wanted to be realistic about your chances with medical negligence.

Particularly overnight most emergency sections are carried out by 'trainees', as they are the registrars onsite at the hospital. No specific permission is needed.

This is a really rare but unfortunate complication and it would come down to what is on the written consent to surgery form you signed. It's highly ikely that the outcome will be you suffered a complication, rather than from negligence.

I appreciate you are in pain and struggling but I think your efforts are best addressed by trying to escalate your case with the department you have been referred to. You've got some good advice here how to do that.

I'm so sorry you're going through this.

Would it be worth asking the GP whether being put into a chemical menopause might be an option to ease the pain in the short term?

This is what you need to do OP and ignore everyone else. Though I agree 'kicking up shit' at your GP is rude and pointless.

I'm pretty sure Irwin Mitchell do medical negligence.

Secondly this needs raising as a formal complaint. All hospitals have a formal complaint department. You have two issues 1. The botched operation

1. Current waiting times is unacceptable for your condition

Do you have your notes from the op? If not I want kick start a SARS request as well, although this will likely take a mo to to come back and I think considering the pain you are in you need to action everything at once

I get that you're out of energy and sick of battling - I say this from a similar situation . But you need to. This isn't acceptable. We can talk about how hard everyone works in the NHS etc and lack of funding etc and all of that... however to leave a patient like this is wrong. Don't feel bad. They need to be accountable. It's not fair on your or your beautiful kids.

I should also say formal complaints is different department to PALS. I feel you're past the PALS stage. Who can take a long time to liaise between departments and do think this needs to be dealt with quickly. Wishing you well x

I don't think kicking off at your GP is the answer, but given that you say this was caused by what sounds like negligence I would be making a formal complaint via PALS and seeking legal advice (and making the hospital aware that you are going down the legal route).

As a HCP myself I rarely agree with people wanting to sue the already fragile and underfunded NHS but I've also seen how the threat of legal action can expedite processes in cases where there really is wrong doing and negligence.

People make legal threats over all sorts of nonsense but it sounds like you legitimately have cause to seek legal advice, I'm not suggesting monetary but either they fix their mistake or fund for you to be seen privately which is also something that goes on a lot when there are wait lists.

I hope you get the care you need and deserve soon OP.

‘Shit head reporter’. Nice 🙄

I’m a reporter and would write your story OP but you’re not local to me. I’m absolutely sure your local paper would pick something like this up. If you scroll to the bottom of their website, find the contact us section and pick a female reporter and email them with a pic.

I’d also strongly recommend getting in touch with your MP. They are often very helpful in this type of situation.

It's a bloody scandal that you've already been waiting 2-3 years and may still have to wait another 18 months, OP. I'm so sorry that you're going through this.

I thought that NHS Scotland had a "treatment time guarantee" rule, and that if treatment couldn't be delivered locally within the guaranteed time, they had to refer you to another trust that could.

Either I was under a massive misapprehension, or it's not bloody working.

I'm so sorry you're going through this.
I don't think we have PALS in Scotland.
OP you should contact your MSP. Email them, send them the timeline of how long you've been waiting, send photos, tell you you can't walk and get them to take up your case with the hospital

I would second getting in touch with your MSP, they can contact hospital etc on your behalf.
I'm so sorry for what you are going through, this is absolutely horrendous.

@Spirael well I will be having a hysterectomy I think so I probably will be going on treatment

@Catsonskis hi thank you for this information this is exactly what could help me achieve getting up the surgery list.

I will look at everything you have told me and take further action I didn’t know that after a certain amount of weeks really should be seen to and I will be hitting over the 100 weeks by the time surgery comes along I feel like I’m being fobbed of.

when I have received the information back would you be able to have a we look at it for me so I know if there being honest and just having me on with wait times. Thank you

Included some more photos.
I totally understand I’m wrong in saying I should be kicking up shit but it’s very very frustrating.

@Lovelyjubbbly youre welcome. I know it’s difficult but try to remain factual and calm in your approach, you will get more out of people by being reasonable (and probably make someone think you know what you’re talking about with some of the lingo and make them pay extra attention - not that it should take that of course.

best case scenario: they bump you up the list to get rid of you
worst case scenario: your pathway is scrutinised and checked for accuracy and missed opportunities, a clinician reviews and reassesses your clinical priority and your put in the correct position in the waiting list, being those who have legitimately waited longer than you (if any) and you get a time line of when you can reasonably be expected to be seen.

happy to take a look at what they respond to you with, just private message me on here.

I really hope my nhs colleagues don’t let you down any further and you get the answers and reassurance you need.

all the best!

@Lovelyjubbbly when was the last time you were seen and examined by a clinician at the hospital? And did they list you for surgery then? Have you had any pre op assessment?