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To start an anonymous project where patients and staff share poor experiences of mental health in the NHS

(62 Posts)
FrailWhale Tue 13-Mar-18 10:10:10

Specifically, when they have had physical health conditions ignored or denied because a small number of doctors and nursing staff cannot see past a mental health diagnosis?

I have been affected by this quite badly; I am starting to think it's much more common than I realised. I also have started to think that the effects don't only impact the patient, but the staff who, in EM/GP/AAU tend to have higher levels of stress and mental health conditions.

I want to give people a space to talk, and start collecting anonymised data - a bit like an investigative journalist would - in the first instance.

Eltonjohnssyrup Tue 13-Mar-18 10:15:03

Yes, I suffer from depression and had massive problems getting my fertility issues (PCOS) diagnoses for exactly that reason. And arthritis too.

FrailWhale Tue 13-Mar-18 10:16:56

Thank you for the reply @Eltonjohnssyrup. I'm sorry you've also had poor care due to mental health. I really want to try and change this somehow, particularly with all the "Staff Wellness" that EM are focusing on... How can staff be well when they hear their colleagues referring to patients as "fucking nutcases"?

Eltonjohnssyrup Tue 13-Mar-18 10:39:45

The PCOS was quite distressing. I met DH at 20 never used contraception and no pregnancies despite regular sex.

Went to the doctors at 24 and said I was concerned. GP made it really obvious they didn’t believe me and made references to anxiety and intimated they thought I probably hadn’t got pregnant the first month of trying so was panicking. Were really unhelpful.

Went back again when I was 26. Again, really unhelpful. Clearly disbelieving, made it clear in their opinion it was impossible a woman of 20 could have wanted a baby so refused to believe I’d had six years of unprotected sex. Blamed it on anxiety. Thought we’d probably been trying for a month. Got fobbed off by being told regular unprotected sex for six years without pregnancy could not be counted as infertility unless we’d actively labelled it as ‘trying’ and were doing things like tracking basal body temperature. Told to do that for 2 years and come back.

Did it for two years. Went back. Was again disbelieved and told I was exaggerating because of anxiety. Concerns raised on the two previous visits hadn’t been noted and I was told they would not believe I had been trying for two years unless a doctor officially recorded that I had started trying and 2 years had lapsed. Asked them to officially record it.

Finally when I went back at 30 they extremely reluctantly referred me on. Diagnosed with PCOS and anovulatory infertility when I was 31. Seven years after first raising concerns.

It was really, really horrible. They would take one look at my notes and see I had anxiety and depression then just start completely disbelieving what I said.

needtogiveitablow Tue 13-Mar-18 10:45:10

I’ve had experience of the opposite actually - a family member is an alcoholic and suffers from a number of physical illnesses directly attributed to this. The alcoholism is due to self medicating for a number of mental health issues which are unresolved and untreated. The local hospital is very good at detoxing and then sending the person home but there is never any mental health team involvement in resolving the mental health issues at the root of this. This is largely due to cuts in the service but even so, a lot of money would be saved in the long run by doing this than 6 weeks + stays in hospital each time.? Unfortunately I think it’s a sign of the times

FrailWhale Tue 13-Mar-18 11:01:28

@needtogiveitablow Thank you for sharing your experiences. I hope your brother recovers for a long-term period soon and the access to mental health services in you area improves.

FrailWhale Tue 13-Mar-18 11:04:11

@Eltonjohnssyrup The looking my notes and completely disbelieving me is what happens to me. I've spent 23 days in critical care because the clinic that need to do the testing refuse to do it... I am now paying privately, but the more I speak about this, the more I realise I am not alone.

WonkyDonk87 Tue 13-Mar-18 12:07:20

Would it not be more balanced to ask for people's experiences without the slant towards negative? I'm sorry you felt your health needs weren't addressed appropriately, but seeking only negative experiences from others seems a bit.... vendetta like?

FrailWhale Tue 13-Mar-18 12:16:23

@WonkyDonk87 No vendetta at all - it would improve services and improve staff morale (it really can't be pleasant to be a member of staff with a mental health diagnosis in these conditions).

Physical ailments not being treated or investigated when they should be due a clinician not seeing past a MH diagnosis are a huge drain on resources. It's a small minority of doctors, but I actually think it's scandalous. It only takes on more senior doctor to act in this way for juniors to start behaving like this too.

Qvar Tue 13-Mar-18 12:21:13

My Gp ignored my adult onset asthma for years. Why? He thought I was having panic attacks.

rinabean Tue 13-Mar-18 12:23:50

Of course YANBU, it would be really valuable. It's especially bad for women with mental health problems past and present, I have heard some absolute horror stories. I have also heard terrible stories from doctors in particular with mental health problems, they are basically being bullied on a mass scale by their bosses. It's not surprising that this is mirrored in poor mental health services in general. It's a very big problem and it would be great for someone to try to expose some of its roots like this.

Please don't worry about being fair or balanced or whatever, how could you? Who is going to take the time to say "despite my mental health problems, everything was fine" - no-one is going to do that because there would be no point, there's nothing to change there, there's no problem to tackle. Asking to not be discriminated against for being diagnosed with mental illnesses also isn't a "vendetta", it's amazing what some people will say.

TheQueenOfWands Tue 13-Mar-18 12:24:46

I have depression and anxiety.

I had a severe chest infection ignored because they thought it was 'stress'.

Had to go to A&E that night, couldn't fecking breathe. Got some proper treatment though. Suspect it was because that doctor didn't know my medical history.

FrailWhale Tue 13-Mar-18 12:26:38

@Qvar Flippin' heck. Have you changed GPs? All of these are the reasons I am starting to think this needs discussed - I thought it was just me having this experience until recently when I was in a hospital ward and saw the nurses leave a lady with mental health conditions lying in her own poo whilst saying she was bitching to me about what a "head case" she was [they were unaware at this stage that I have a severe and enduring mental health problem]...

I don't think people can fully understand how awful it is unless they have experienced it.

iloveruby Tue 13-Mar-18 13:58:56

I went to the doctor with an ear infection - he took a quick look and then asked me what was 'really the problem'. Two days later my ear drum burst.

x2boys Tue 13-Mar-18 14:05:42

It works both ways unfortunately when I was a staff nurse on acute psychiatry whenever somebody needed to be admitted to a general ward they would be declared medically fit often and discharged back to the mental health wards often before they were well enough (most mental health nurses are not general trained )

FrailWhale Tue 13-Mar-18 15:01:08

@rinabean Thank you for the supportive post, you managed to write what I was trying to say a lot better than I had managed to in my posts.

@TheQueenOfWands This echoes my experience. Treatment was fine until A and E got hold of my Summary Care Record which 1) I have never consented to having one, and I have actually opted out of three times now, and 2) No one in A and E asked my permission to view it, which is supposed to happen (And what my GP are covering their backsides with saying it doesn't matter because they have to ask permission). I'm furious. No one will even tell me what's on the SCR.

@x2boys That's kind of where I am coming from, physical health conditions not being treated adequately in patients with mental health difficulties.

lljkk Tue 13-Mar-18 15:02:36

It would help morale more to also praise NHS when they get it right. If morale is what one cared about.

FrailWhale Tue 13-Mar-18 15:05:19

@lljkk There are plenty of routes that the NHS can be praised, NHS choices springs to mind immediately.

LifeBeginsAtGin Tue 13-Mar-18 15:17:09

OP, do you think starting this thread will be in your best interests?

TheEgregiousPeach Tue 13-Mar-18 15:19:17

I think what Wonky is saying, is that to make this study viable you would need to look at experiences as a whole, not just negative. If you start out with the implication that experiences are negative it wouldn't be considered valid or reliable results.
So consider looking at what makes experiences positive or negative, and how these factors are handled clinically; do mental health diagnoses complicate diagnosis of physical ailments? etc, rather than assuming they do based on anecdotal evidence. And then gather the factors that increase positive experiences with clinical recommendations.
Sounds interesting, are you an academic or clinician? There's probably funding in that research idea!

FrailWhale Tue 13-Mar-18 15:20:38

@LifeBeginsAtGin Turns out that quite a few people have had similar experiences. Couple those with the experiences that have been shared with me in real life, I've got no issues with starting this thread.

Having a mental health condition should not disqualify you from receiving the same standard of physical health care that any other patient would at all times.

FrailWhale Tue 13-Mar-18 15:23:16

@TheEgregiousPeach Ah, I see. Fair point wonky. To me the focus is on negativity right now - but yes, I do think it would be important to look at what makes it a positive experience too.

catlady45 Tue 13-Mar-18 15:23:50

Yes go for it. I left gp practice because of it.

FrailWhale Tue 13-Mar-18 15:25:05

Academic, but this is based on personal experience. I just have gotten a bit frustrated with my experience at the moment and wanted to turn it into something positive. I've met lots of wonderful medics who have fought hard for me to get the proper health care (as well as fought for my life). Apologies, I posted without including that bit.

catlady45 Tue 13-Mar-18 15:25:19

Not in the scenario umyou say though more they were offering me adequate care that i needed to help treat depression.

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