The whole shebang....

[Kangaro]

Hi. We are all f****d. Excuse the language, but we are. It's a fight to get to see anyone. Then when we do, they mostly treat us abominally. Most doctors I have seen are uncaring, incompetent, patronising, arrogant, money driven - basically up their own backsides. A disgrace to their profession.

Then when you go through the hospital complaint processes, it's all covering up for each other, deliberately not replying to your difficult questions, not complying with their own complaint process rules - doing everything they can to delay and obfuscate. If you keep complaining (making yourself more ill in the process), they refer you to the Parliamentary Health Ombudsman - who are as much use as a chocolate teapot.

I know I've said this before but think of the Dead Parrot Monty Python sketch - you're the customer, the shopkeeper is the NHS/PHSO.

I'm writing this because I am so upset and I just don't know how to keep going. Being so ill and yet having to fight daily to try and get help just isn't right. I just want to sit and do nothing - but that means the ba*t**ds have won, and I can't allow that to happen.

SHAME ON THE NHS.

THE NHS DOESN'T CARE.

Whatever you're going through, please don't give up trying to get answers from them. How dare they treat us like this. Buy a small voice recorder and take it to appointments to record the crap they come out with (if they don't like it, point out that you have memory/cognitive problems and need the recording to remember what is said. My local hospital is changing it's policy to accommodate voice recordings after my complaints of being told "no" by one particularly vile consultant) keep records, make the complaints. We have to keep challenging them.

Next step for me, type everything up for a solicitor and see if help can be got from them. May or may not work, but can't back down.

Lots of love

x

[Lady4]

Sadly, we have to advocate for ourselves, stick together. I complained about how a letter was worded but I did receive a call back off Specialist who justified it. Then another letter from Camhs had errors in it (I recorded this as usually forever making notes, interrupting my son, filling in the gaps, so I could just sit back and listen and absorb as much as possible).

We are here to help each other, what FND symptoms are you currently experiencing? Maybe the Community can offer some suggestions.

[Kangaro in reply to Lady4]

Hi. Thanks for replying - makes me feel a bit supported.

Part of the problem is I don't think that I have FND and I am challenging the diagnosis.

As soon as cliniceans see FND on your record, it's been my experience that they put everything down to FND and don't investigate for any physical causes, which is a dangerous business.

[Lady4 in reply to Kangaro]

Totally agree with you there and FND is common with other illnesses and vice versa, so anything new should be investigated.

[Van604 in reply to Kangaro]

Yes, that happened to me too. I needed follow up for an enlarged thyroid with a nodule (found on an MRI), but as soon as the internal medicine specialist saw FND on my file she said I was "well-served by a neuropsychiatrist"! I couldn't yell at her because that would have just confirmed the crazy lady diagnosis I walked out and haven't been near a doctor for three years. My insides may be falling apart but my mental health is so much better!

[Kangaro in reply to Van604]

Well said Van604. Agree completely. Staying away from NHS is MUCH better for mental health. It's just so sad and so wrong though - they're supposed to be there to help and support us.

I am personally frightened of the NHS in all its forms. They seem to have their one set way of approaching matters and that's it - very archaic. From the research that I do, other country's healthcare is far advanced in current medical understanding/knowledge than that of the NHS.

x

[Van604 in reply to Kangaro]

My bad experiences were in Canada, which also has "free", universal healthcare like the NHS, and similar problems. I can't even get a GP - I moved to a new city and have been on a waiting list for 2 years! Although, as I said, I'm extremely wary of exposing myself to one again!

[Westie_1]

Hi Kangaro very well said. I wish you strength and I’m right behind you. As soon as it’s on our records we are well and truly fobbed off. Good job that we have other proof though before the FND dx. I’m tired but trying to fight this system myself. It’s horrendous but thank you for actually saying what is happening to us. You would have to see it to believe it!! I might start recording all my appointments that’s such a great idea 👍take care

[Van604]

I completely understand your anger and frustration. I do wish now that I had made formal complaints about several people involved in my "care"; I didn't think it was worth it because I'd been through a hospital complaints process before (after back surgery) and they just denied everything. Great idea to record appointments - I wish I'd done that too with one particular, totally bonkers neuropsychiatrist. The stuff he said to me was crazy, but of course he didn't put it in my notes. I did sue my employer, for not letting me go back to work. Didn't get much out of it because my lawyer advised me to settle (for a pitiful amount) when it became clear they were going to play hardball. It's a difficult dilemma because fighting back is good for your self esteem, but totally exhausting when you're already unwell. I wish you all the best.

[Van604 in reply to Van604]

Forgot to say, have you read "Doing Harm" by Maya Dusenbery? Very good book on bad medicine/science

[Kangaro in reply to Van604]

Thankyou. I will look into that.Medical gaslighting is rife. Too easy for clinicians to put symptoms down to FND. It's so upsetting to read all the different stories on here - so many seem to be told that they have FND with little/no physical investigations. This is what happened to me.

Shame on you doctors with your cavalier diagnoses and attitudes. You don't deserve any respect.

[Lady4 in reply to Van604]

I think sometimes its best to let some little battles go and reserve the energy for the more important ones and remember to do something fun that replenishes your levels 😊

[Van604 in reply to Lady4]

I would agree with you if these were little battles but fighting to save your livelihood is a big battle. Fighting to be respected and given a sensible diagnosis and to not be fobbed off or gaslighted is a big battle. These things are worth fighting for.

[Lady4 in reply to Van604]

Yes I know, I have been reading about how our brains have a body-budget that is responsible to keep us alive, our organs working etc, so when we experience stress, over exertion etc we make a withdrawal from the budget and when we eat, drink, relax etc we make a deposit, so its a tough balancing act.

[tabey]

Agree with everything had the same treatment at Guys hospital London they could not even call me by my correct name and said it waa ment to be a joke Shame on them and yep went to the health omb which i agree they are as much help as a chocholate teapot on a open fire

Its so sad we are treated this way but as long as the NHS have there % figures to show at end of the month for that bonus all is good

[Nansea]

Just saw this in my feed, slow to check my emails. I want to let you know, I was originally diagnosed early on with FND. I have been ill for 5 going on 6th year. Was treated terribly, was told have to believe diagnosis to get better, told I needed cognitive behavior therapy, tried to send me to neuropsychiatrist. That diagnosis was very damaging to my medical chart and my emotional well being. I believed the diagnosis was incorrect. Turns out I was right. It was very difficult to keep going feeling so ill, test after test( which were all read as normal) eight different neurologists, and a few other specialties. I finally found the right docs, and I am being treated for a spontaneous CEREBRAL SPINAL FLUID LEAK. Since it had gone on for so long, you can have a whole bunch of “neurological weirdness”going on, but guess what….IT IS TOTALLY FIXABLE! If you don’t agree with the diagnosis, trust yourself, do your own research. Believe me, I have been majorly depressed, it was hard not to give up. I had great family support, and finally a great team of docs. Hang in there. I know there are more on this website with CSF leak, I hope this post helps someone out there.

[Van604 in reply to Nansea]

Good for you - we can't let ourselves be fobbed off by careless doctors any more. One of my friends had chest pain last week and was told by the doctor that she had digestive problems and was "stressed" because her husband had cancer. The next day she had a massive heart attack and died. It is beyond upsetting.

[Kangaro in reply to Van604]

That's unbelievable - but sadly it's probably happening everywhere with all the cavalier attitudes to diagnosis. So sorry about your friend. x

[Lady4 in reply to Van604]

Thats awlful, sometimes we have to go with our gut instinct and demand further answers. I am sorry for your loss.

[Kangaro in reply to Nansea]

Did they remove the FND diagnosis and did you get any apologies? x

[Nansea in reply to Kangaro]

Unfortunately the FND diagnosis remains attached to my medical record. I am going to write letters to all previous docs about diagnosis of spontaneous CSFLeak. Hopefully at least one of them will care, and hopefully help future patients.

[Lady4 in reply to Nansea]

Thanks for sharing, hope it can help others. Some of the symptoms like Chronic Pain are so general that they could refer to a whole myraid of conditions.