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**Trigger warning** Advice needed. Previous MH problem means HCPs aren't taking me seriously.

11 replies

AndYouMayAskYourself · 07/05/2019 15:23

Some years back I was seriously sexually assaulted.
As a result I suffered PTSD. I was under the care of the crisis team for some time.
Aside from crisis care I have never received help for my MH going forward.
I have done my best to manage my own recovery using many different approaches but I'm not entirely recovered even now.

Fast forward to now.
Life is much better, I still often have PTSD flashbacks when life becomes stressful as it invariably does and I find it difficult to control my panic/worry.

In addition I have a physical problem that is proving difficult to diagnose. It is thought to be one thing but the symptoms don't entirely fit.
I'm being bounced between different tests which add another piece of the jigsaw puzzle.

I have been admitted to hospital twice as a result of the physical symptoms.

My concern is that I feel that I'm not being taken seriously by the NHS.
I worry that my medical notes say MAD in big letters.

Usually I communicate well but very often HCPs aren't listening to me.
A clear example of this would be a hospital admission last month where the nurse was trying to cannulate me. I'm one of those people who doesn't have good veins. Made worse because when my physical symptoms increase I can go into shock, my temperature drops and my veins 'hide'.
I clearly, calmly, without criticism told the nurse the cannula had blown.
He ignored this. My hand was bleeding but nothing could be drawn from or put into the site. Saline in the cannula didn't go in but made the back of my hand bulge with fluid.
I asked him, again nicely, to please remove that cannula and try again. He ignored me and walked off.
Throughout I was calm and reasonable.

Another example is the difference when I take DH with me. He is white, middle aged, middle class and the difference in HCPs listening to concerns when DH is there is remarkable.

Some HCPs have tried to dismiss my physical symptoms as psychosomatic. This is fair enough but for the fact that there are clear test indications that there is something wrong.

Yet another example there are many is the HCP who said a CT scan would be a waste of money because in his opinion my symptoms are psychosomatic.
At a later date a different HCP referred me for a CT scan which did show a cause of my physical pain.
In the interim I had been left in months of significant physical pain.

If it was someone else I could advocate for them but I can't seem to assert myself when it's me in the surgery or hospital bed.
If I object again, clearly and kindly I'm told that my symptoms are psychosomatic or discharged or sent away.

Today I'm waiting for further test results, my GP surgery have them but they won't share them with me until tomorrow because my own GP isn't in until then I've never met my own GP. And no-one else in the large practice can give me the results.

How can I get HCPs to disregard my previous history of MH problems and take me seriously?

Thank you for reading Thanks
Apologies that this is so long.

OP posts:
greenberet · 07/05/2019 15:39

Don’t know the answer to this but just wanted to say I get this. I don’t think it’s restricted to the nhs either. I suffer with depression previously PTSD too I have gone through an extremely acrimonious divorce where I was seen as too emotional ( because when people don’t take me seriously when Im stressed I always end up in tears) and too suspicious by my lawyers over what I said my ex was capable of - they didn’t believe me - thought they could hood wink me and as a result lost out financially - I’ve now got complaints with regulators.

Also had experience of this with nhs - needed a back op - been in pain for over 6 months had to fight to get seen - had to fight to get op when admitted to have op done as was going to cancel all because I didn’t have full symptoms of cauda equine ie still had bladder control. After op I was told that the disc intrusion was so severe they were surprised I still had bladder control!

I’m in bed today symptoms of depression quite high - had enough of being doubted all the time and seen as stupid, or imagining things just because I have MH

Flowers
greenberet · 07/05/2019 15:43

By the way - Clearly and kindly didn’t work for me - it was only when I got emotional and a bit shouty that I got listened too - you know yourself best - if I hadn’t had that op that afternoon my situation could be completely different.

AndYouMayAskYourself · 07/05/2019 16:24

Thank you greenberet, I'm sorry you are feeling low atm and I'm sorry about your experience too.

I hear you when you say you're in bed at the moment but you are not alone. Responding to my post made me feel like I wasn't alone.
Even if you haven't been able to get out of bed to brush your teeth today you've made a big improvement to my day, just by sending an anonymous message to a stranger on the internet.

Feel better soon Thanks

To anyone else reading my post this is not an anti NHS thread the NHS saved my life and one of my DCs. I cherish the NHS and I have met some incredible and dedicated HCPs, I'm referring to specific experiences I have had lately. Unfortunately it just takes an over rushed person, having a bad day and we all have those to make a decision, that they probably don't register, which has an impact on the patient.

At work my bad days don't impact lives. Despite my OP I am firmly pro NHS.

OP posts:
onetwofive · 07/05/2019 16:33

Don't think I can be of any help but just wanted to say that sounds really hard and I hope you get somewhere with it all. Although you shouldn't need to, maybe taking your DH along to appts will get you where you need to be?

AngryWolf · 07/05/2019 16:40

I'm sorry, I haven't much to contribute but have you tried speaking with your local PALS (Patient Advice & Liaison Service)

https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/

Good luck Thanks

AndYouMayAskYourself · 07/05/2019 18:17

Thank you and I agree, DH comes to as many appointments as possible and he is brilliant onetwofive but he works so can't come to all of them.

Hmm I did wonder about PALS AngryWolf but I'm worried that they'll either dismiss me as mad or have me down as a troublemaker and that would make things worse for myself. Besides, I don't want to complain about anyone in particular, as I say I do appreciate how much strain the NHS is under.

I've tried being firm but ime if they're not listening, they're not listening. I don't dare get properly mardy in case I give them cause to say 'see we said she was mad' you know?

OP posts:
greenberet · 07/05/2019 18:56

Op your last statement has really got my goat - just because you have MH issues there is no reason that you should be treated any differently from anyone else - in some circumstances MH warrants special treatment but this is not it and for you to feel that this is why you are not being listened to is not on.

In my case I did threaten PALS and this is what got everything moving - when I first saw consultant I was told I needed surgery within 4 weeks - it was 6 months - I had a right go at him saying don’t tell me my back needs surgery urgently and then backtrack due to shortages whatever. That’s not my responsibility that’s there’s.

I’m not knocking NHS either but this is your life in question your health - you are just a number to them and if they want to say see we said she was mad - I’d be throwing this at them too. Because if those working in the medical profession cannot treat MH issues with the respect it deserves then what hope is there!

Get mardy! Make them hear you!

AndYouMayAskYourself · 07/05/2019 19:33

For a minute there I thought I'd upset you myself greenberet I agree that there shouldn't be discrimination against people with MH struggles, but there is and plenty of it too.
I'm lucky that, even though I'm not being taken seriously and no-one is taking an overview of my physical care I do have a voice, however small it is.

It doesn't seem to matter how many campaigns raise awareness of MH the message doesn't seem to be getting through.

OP posts:
TigerBreadAddict · 07/05/2019 19:40

I just want to add, I don’t think it’s necessarily due to your MH diagnosis because I can totally relate and I have never had MH problems.
Being a woman. Being assertive. Asking questions. Being well informed about your own health. All of these seem to work against us sometimes.

AndYouMayAskYourself · 07/05/2019 22:07

Absolutely TigerBreadAddict I bloody love tiger bread Being a woman. Being assertive. Asking questions. Being well informed about your own health. All of these seem to work against us sometimes.
Yes this ^

When I was at my worst with PTSD and being passed from the crisis team to the community I know that the the way I looked; eg I was always showered, had clean hair, tidy nails and was neatly dressed etc all went against me. I know this because one of the community team told me I couldn't be that ill as I appeared so capable, she knew this because of my appearance Confused I was assigned another worker after that.

I do think that anyone struggling with their physical or mental health can find that this is an additional barrier to communicating their symptoms, problems and needs.

In my own case I'm not sure whether there really is a big, red flag on my notes saying 'crazy' or whether the significant pain and the medication I am taking are contributing to my inability to communicate my concerns and information about my condition.

Sadly one of the results of the assault I suffered is that my self esteem has taken a dip whilst my suspicion of others has increased.

OP posts:
greenberet · 08/05/2019 12:28

I get the impact on self esteem and suspicion of others - but you know what maybe you are right on this - maybe your gut is trying to tell you - after what I have been through my head tells me I should never trust another human being again - not a lawyer or anyone linked to the legal profession, not a man and a relationship - but you cannot live like this.

I had 3 team members and the back nurse in my room before I went down for op - they were trying to gage whether they could get away with sending me home - it was only when I said - very emotionally - that I couldn’t even lift a basket of washing that I think something clicked and they realised I was serious - within 5 mins anaesthetist was there.

In relation to being a woman generally this stinks - and also something I can relate too - and as for asking too many questions - this has got me into trouble my whole life - and is currently where I’m at now - legals must have thought I was stupid - once I got myself together and started asking questions whole attitude changed and when I refused to accept what I was being told I was ditched by my solicitor. This has happened three times now - people telling me something that doesn’t make sense and the more questions you ask the more it does not make sense until they effectively tell you to shut up,

How do you deal with this when you are facing professional bureacacy and it’s not just from men from other women too - there was a thread on this somewhere

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