How do I complain about terrible experience but also then find another consultant to do the op?

[MiscellaneousAssortment]

Long story that I'm too flattened to recount but trying to summarise:

Background: I'm badly disabled with a systemic condition that effects everything, from healing & operation outcomes, massive amount of pain meds and huge range of meds that my body can't absorb or am resistent to. Plus the actual physical problems of the condition itself and generally I'm very poorly, bed bound etc,

What happened: had pancreatitis severely and was in hosp for weeks. Care was 'patchy' at best, specialist pancreas/ gallbladder consultant was AWFUL, and it went beyond the general arrogance that you overlook due to good surgeon, his arrogance led to a misdiagnosis, bad treatment, wrong drugs and drugs withheld deliberately. It took the complex pain team each day to fight for me and without them the outcome would have been much much worse. But even so, they couldn't make him behave better and it had a massive effect on me & made a bad situation into a living nightmare. I have PTSD and have just started to see someone about it.

Was told I urgently needed an operation in January, and that there's a danger in leaving it beyond then.

Heard NOTHING from them until today. I know I've been gambling with my health but I've not been up to dealing with them.

Between then & now: wanted to make a complaint but took me months to recover, partly due to lack of care. Then my father died. Now am utterly alone with DS 5yrs, and every day is a struggle rely on carers to survive.

Now: the general admissions office called today and want me to go in for the op very soon. Just pitch up to be operated on and no way of contacting the consultant - I don't have any contact details, secretary or out patients clinic. Have been told he won't discuss anything prior to the op as 'his time is precious and there's no clinical need'. Clearly there is a massive clinical need!

Conclusion: I can't let this man near me again, he is dangerous to me. And his behaviour wasn't the kind of thing that leaves room for apology or a change of heart. But I do need the op.

Am worried if I try and raise this or say I cannot have the op as tjjngs are now, i'll get discharged and no way of getting another surgeon to operate. My gp isn't good so no use looking for information or advocacy from them.

Questions:
What do I do?

[gingeroots]

God how dreadful .Wish I knew what advice to give .
PALS ?
Ask one of the pain management team for advice ? Would you be able to contact one of them ?
Is it possible for you to have an advocate ? www.seap.org.uk/services/physical-disability-advocacy/

Would your GP help ? Maybe refer you elsewhere ?

Hope someone with more knowledge come along .Maybe copy your post and put it in Chat www.mumsnet.com/Talk/_chat for more traffic ?

[WaitingForEgg]

Agree with advice Ginger gave. Start with GP (hoping you have a good one), they should have records of hospital admission etc. He won't be the only Gastro surgeon in the area, you are entitled to a choice.
Definitely try to get an advocate, it can be intimidating especially when a consultant is so arrogant.
Complain via PALS, explain you still need this operation and that you simply cannot cope with him doing it, again there should be another Gastro surgeon
Hope it all works out

[EducationalWelfareMakeMeCry]

Why would you let someone who behaves like that have total control of your fragile body?

What other hospitals and consultants are there near you?

I am so sorry that happened to you. I guess you have had poor care before.

I also have a complex multisystem condition and PTSD relating to professionals.

[MiscellaneousAssortment]

Thanks all, is PALs still a thing? I thought it wasn't but have that vaguely in my mind vs an actual fact.

I feel a bit better now Ive decided there's no way I'm going to let him go near me again. It was awful yesterday hearing out of the blue, really brought everything back.

I do need to see my gp don't I. Argh. I don't have a good one, or in fact any one, as the gp practise have basically abdicated from their role when I became one of those rubbish patients with complex needs and multiple costly referrals. They might be persuaded to refer somewhere else but only if I could find somewhere....

[WaitingForEgg]

Miscellaneous They most likely won't have to actually refer elsewhere. Most teaching hospitals have more than one GI surgeon. My previous small hospital had 5! Each have a separate team, separate registrar etc. Surgeons are not notorious for having great bed side manner but I assure you most are better than you describe.
Same with GP practice, if yours is rubbish you may have another local practice taking patients? Often it's very much dependent on that individual GP, it isn't going to cost them any more, you need the surgery no matter what.
PALS is still a thing, sometimes it's given a different name but it's essentially the hospitals complaint service. Their helpfulness is up and down, but your complaint is relatively straightforward, you don't want this surgeon for good reasons, you need another

[MiscellaneousAssortment]

My whole experience was pretty awful including the ward, and I think I would be scared to repeat any of that experience. The irony is I'd originally been in another hospital which had been really good but they transferred me (at midnight) to the other hospital where the best specialist was. Worst move ever though was done out of the best of motives.

The whole atmosphere was bad, patients were definitely not the priority. I don't know if that consultant & his team were able to be so awful because of the setting, or if they led the way in creating a bad hospital culture. But Im not sure I could even walk back into that hospital, or ward.

[EducationalWelfareMakeMeCry]

You don't have to walk back in there. Where would you feel happier and safer?

[MiscellaneousAssortment]

I phoned the hospital complaints line and they said I have to make a formal complaint in order for changes in consultant (or pref hospital) to be considered.

They were nice though focused on in one part of what happened particularly, so I have to be careful to get the whole of it across when I complain properly:

A. Repeatedly refused to acknowledge that I had a pre- existing condition which impacts on:

1. my general health (v weak & poorly generally)
   
2. Efficacy & absorption of drugs esp pain killers
   
3. Opiate resistance & existing high levels of opiates in system
   
4. Surgery & post operative care
   

Resulted in bad care & treatment, which the complex pain team had to keep getting involved with to mitigate.

Eg the consultants senior registrar telling me I would be discharged shortly with paracetamol & codeine. When i pointed out that codiene stopped working 5 yrs ago and I was on heavy duty opiates even without the pancreatitis, he laughed patronisingly and said no paracetamol and codiene will be just fine (in total, not even in conjunction with existing drugs!), and when I pushed back again and suggested he talk to the pain team he said he'd confer with their own pain specialist but he knew they'd confirm the paracetamol & codiene. Fuck wit. I'm on enough opiates toand it dangerous to randomly stop them, let alone the excruitiating pain... Evil smug git.

BtW The nurses constantly refused to issue me with the drugs they had been told to by the docs and anaesthetist in the pain team. They also refused to go ask or get clarification after refusing me the medication I was prescribed (& shouted at me when I was crying in pain - needless pain that they put me in). There was a lot of awful nursing stuff which was important but I feel it may muddy the waters / make me sound less credible about the consultant complaint. I wonder if the nursing attitude came from the consultants ignorance and refusal to acknowledge my condition.

B. never treated me as a whole person, relied on looking at clinical notes kept at nurses station (which clearly didn't have anything about my condition in it, or if it did decided to ignore it). I know that's just the process these days, but they used the process to distance themselves from patients/ me. when they came round to my bed it was to dispense their decisions/ verdict, & mostly to train students, not to actually look at the patient or gather more info than what blood tests would tell them.

This resulted in a complete disconnect between their statements and what was actually happening.

Eg telling me I was well, when I was no better, trying to discharge me which the ward doctor refused to as soon as he saw me...

The hospital didn't treat my bowel before I left so I ended up with bad fecal impaction . I didn't go to the toilet for 14 days and that resulted in a very bad impacted stool. A serious situation where I was in agonising pain and too scared to go back to hospital.

C. Calling he both an alcoholic and a liar. Fuckkng evil bastard. Pancreatitis caused usually by gallstones but they did a scan the night I was admitted and couldn't see much. In a small number of cases it can be caused by alcohol abuse.

He swanned into the ward and with his back to me the whole time, he informed his students that 'this' (ie. Me) was a simple case of pancreatitis but was caused by long term alcohol abuse' I interupted and said excuse me?! I don't think so, I drink very little... He didn't reply to me but turned back to his students and said something like 'this is why you can't rely on patient reporting' and walked off as I tried to argue...

The sad thing is I don't drink as alcohol and all the drugs am on don't mix. I had drunk TWO SHERRIES that year. Am utterly dependent on carers so couldn't even get to a bar or purchase and carry bottles home. I am so ill I can barely make it through each day and all my energy goes into my little boy. Accusing me of being an alcoholic is possibly the most ludicrous and ignorant thing he could have done. As he would have known if he'd bothered to talk to me.

D. And also they were patronising, rude and arrogant, and treated me like I was worthless, stupid, scum of the earth.

[EducationalWelfareMakeMeCry]

Do you want help writing the complaint letter, as the PTSD makes it hard for me?

Bless your soul. I can identify with your experience sadly.

[EducationalWelfareMakeMeCry]

You do know the Alcoholic is him don't you?

[Twodogsandahooch]

That is not true. You do not need to make a formal complaint in order to switch hospitals or Consultant. Your GP should be able to refer you directly to a different team. I am s hospital doctor and we frequently have referrals like this. They don't necessarily need to go into details of the reasons behind your decision - they could simply say you want a second opinion or have lost faith in your original team

Good luck.

[WaitingForEgg]

As Twodogsandahooch said you don't need to complain to change. It is probably better for your GP to refer you elsewhere and then for you to make a complaint afterwards when you feel up to it. They absolutely should not delay your care/treatment because of it.
It sounds like a truly awful situation. I really hope your GP can make some headway to sort it out

[MiscellaneousAssortment]

Oh you lovely people. That's good to know. Hard enough to write complaint without it being the only way to get away from it.

Took so long just writing that last post and my neck & shoulders hurt from the crying that went with it. Can't read over it or turn it into a letter. Need to push it out of my head now I can't let it invade everything.

Stupid huh, I've had a terrible few years and yet it's this my brain decides to malfunction on? Ffs.

Anyway. I made an appointment with the gp. It's in 2 weeks, double appointment.

[MiscellaneousAssortment]

Creeping in my head still but this may be useful, I found his behaviour utterly unaccountable before but I'm thinking... Do you think the heavy duty drugs made him think I'm a drug addict? If he refused to understand my disability or systemic condition, they'd be no reason except being a druggie to take opiates? Therefore a short step to alcohol addict too?

I feel revolted. Is that what I look like? A sick druggie begging for a fix?

[EducationalWelfareMakeMeCry]

I am the same OP dealing with those traumatic experiences.

The guy has his stuff going in and is transferring it onto vulnerable people he has power and control over. That was all about him not you. What is sadder is he is training others his dysfunction behaviour and attitudes.

Have you felt up to research any where else to have the operation?

[hiddenhome]

You'll probably be reading about him in the papers in a few years. These people are often exposed in the end.

Sorry for your experiences. He is absolutely a revolting twat. Hope you manage to get this resolved. Please try to complain and seek help from someone else.

[MiscellaneousAssortment]

He made me feel like I was nothing. My words meant nothing. My feelings meant nothing. My experience meant nothing. He wiped me away with his words and actions. And left me with no way to help myself.

I hate and despise him. And he won't even have given me even half a thought again.

And I know he'll deny it all, or twist it all and I'll get one of those awful blaming non apologies that will continue to enforce his superiority - you know the kind 'I'm sorry if you perceived this to be the case but blah blah blah'

I told the person on the phone that earlier and she said I should write that in the email too, that I ve been not complaining because I don't feel able to cope with that kind of reply.

I've got nothing concrete to complain about, no evidence, no written notes, no nothing :( I suppose I have to complain for myself but oh god, I don't want to :(

I'm scared enough about going to the gp and asking them to help.

Bloody hell brain not switching off :(

[hiddenhome]

You come across well in your posts. You need to complain because, you won't be the first person to complain about this ghastly creature and his colleagues and employers will know exactly what he's like. Your complaint will be a valuable piece of the jigsaw that will go towards the full picture.

These awful doctors are slowly being identified and dealt with. There is no place left in the world for them as the culture has changed now. They're not gods any longer. The tide is turning. You will be a part of it.

Have courage and seek help wherever you can. Even if you need to change GPs.

[EducationalWelfareMakeMeCry]

Is writing helping or making you cry? Do you want to cry or give yourself a break today?

I have had that done to me too.

Basically they are talking to you in critical parent. This is a term used in transactional analysis. When they do this they make you go into child ego state.

I hope, I am speaking to you adult to adult and that it is helping you.

What do you feel your focus should be on today?

[chaiselounger]

I know complaining is hard.
I didn't want to for fear of getting that 'sorry you see it that way'....
A lawyer once said, consider why you are complaining, because little changes, they just get more adept at covering it up.
I still did it!
Wishing you strength.

[EducationalWelfareMakeMeCry]

Wise Lawyer.

[chaiselounger]

True

[MiscellaneousAssortment]

Not good crying, bad unproductive flooding collapse. Had to cancel work this avo. Hurt neck from crying. Stupid body, can't even let me be sad.

[PausingFlatly]

I'm sorry I can't offer anything except moral support, but have that anyway.

So utterly shit that you have this to deal with on top of the unavoidable problems.

[MiscellaneousAssortment]

Can't deal with it til next week now as can't be like that again, too much to do.

Would anyone mind if I took up the offer of help writing the letter that someone offered yesterday?