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

[FrailWhale]

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.

@Poppins2016 Stories like this scare the hell out of me. This is exactly why I want to do this, to sort of build up an evidence base that people can rely on, or, refer to to implement changes.

@catlady45 Thank you for your post, I hope you are getting the help you need now to support you through depression.

@Poppins2016 That's awful. The MH population are more likely to experience physical health problems, especially those that come into contact with tertiary services. I hope your friend gets some good support soon.
@TheEgregiousPeach Thanks - worded much better than I did!

I have anxiety and my thyroid disease was dismissed by my GP as “stress.” I went private in the end.

@WonkyDonk87 I'm writing up some research at the moment which is why I sounded all text book-y . Funnily enough it's also on patient experiences.

@FrailWhale, I'm interested in this- have you done any preliminary literature reviews yet?

@TheEgregiousPeach No, not yet (I literally just thought of this this morning). I plan to do though, as well as creating a website where people can feed back anonymously.

I've been thinking about wonky's point on positive experiences too and think these do need to be collated and shared - learning from excellence and all that.

Good- crack on with it, it's a good idea. I need to do some work tonight instead of further procrastination but I'm going to PM you tomorrow

Echoing other posters, I have chronic pain, hypothyroidism and hearing difficulties, all of which for years have been attributed to mental health conditions. I'm gradually getting more specialist help but it's all very piecemeal and no one will communicate with each other, god forbid seeing me as a whole person and not a back or a set of ears!

I do find allied health care professionals better at seeing the full picture better though. Audiology in particular automatically understood the link between back pain and hearing issues, and how my mood can be affected by the separate issues.

Ok, so next question - if you were to feedback on these experiences (anonymously), would you like to do it via a form to e-mail, or a set of survey questions; or should both options be offered?

@Bombardier25966 Thank you for sharing your experience, I'm glad you have a good audiologist. I don't find many people speak to each other either - ITU have been really good at getting on the phone to another clinic; A and E has been mixed (depending on which hospital).

Went to GP for IVF as having probs conceiving. GP referred us, 6mths later get an appointment. Appointment cancelled by hospital 2 days before, so wait another 6mths. Get appointment, given appointment have semen analysis. Wait 6mths for appointment for discussion with consultant rgds semen. Go to appointment, they can't found results on system so have to give another sample. Yep you guessed it wait another 6mths to get consultant, who advised results not good but have a chance. So get put to IVF unit. Now more back and forth, and 5 years later to be told sorry not eligible for IVF as told old.

Was 34 when we first went to Drs regarding this. We've since been through hell i.e. losing jobs because of stress etc. and as a result struggling to raise funds to go private. Apols for short cuts in write up.

@MullinerSpec sorry to hear about your experiences, that sounds awful. Do you have any other options?

I've started a twitter account here: twitter.com/UKMental_Health

OP, yes, I would take part. PCOS, neurological disorder Dystonia actually caused by psych meds I reacted to, and ME/CFS on top of personality disorder. complex trauma, compulsive eating and OCD.

Been told my issues are caused by not doing enough and being fat and lazy.

How about sending written complaints to the NHS departments that have caused the issues and let them take action from your feedback and respond? Instead of stirring up anti NHS feeling on MN?

Tistheseason Because if i complained I might get treated worse, even blacklisted? Btw, I am not anti-NHS. Far from it. I just think improvement is needed.

FrailWhale I am happy to do either email or survey.

I don't think it's anti NHS feeling at all. It's people sharing a common experience that's actually quite isolating and distressing when it's happening to you-and as lots of people with MH issues feel like that anyway it doesn't help to have physical health issues ignored.
You don't have to be anti NHS to identify flaws in the system and practice at times-they do exist.
I work managing mental health services and it's fairly common for physical ailments to be disregarded or not considered in their own right, but rather apportioned to a patients mental health-sometimes with fairly serious consequences.

If you're just looking for the negative that's all you'll find I hope you do widen the brief to include positive experiences.

There are plenty of ways to feedback to the NHS on care you feel was good or lacking. I'm not sure it requires setting up a separate project, but agree you need to canvas neutrally for people's opinions, not only ask for poor experiences.
I've found the NHS have been brilliant at treating my mental health issues so I'd happily contribute the brilliant support and care I've received.

I deal with NHS complaints. We don't black list people
We listen and act upon the feedback. We improve processes to improve patient outcomes.
There are sometimes erroneous complaints but this does not change the way patient's are treated. You are not actually permitted to document complaints on medical records.

@Ebonyandivory - you are not going to be blacklisted by the NHS for raising a complaint! That's ludicrous!

Cross post with Tistheseason17

StepAwayFromGoogle Phew! It may be my illness which is trying to tell me that I will get blacklisted, but it is something I do worry about.

You really won't OP. You would be rightly livid if a complaint was on your medical record impacting care. Hope you get support you need

I feel you op. Gps think it's all somatic as soon as you mention mental health. I was sent to a phycologist and had an awful time because of physical problems.

The phycologists I met are the biggest gaslighters you'll meet. Ignoring you. Suggesting it's your fault. It's terrible. Turning everything to suit them. If you disagree you are not trying to get better or 'not being compliant'.

I finally got a physical diagnosis but the way the questioned me and the way it alienated family to not believe me was shattering. It was like emotional abuse... over years. I won't go into it because it's so shocking.

My mum has anxiety and she was told for months her stomach pains were due to panic. She had cancer. So there's another case.