The Lost Souls Lounge - falling through the cracks of the MH system

[swisscheesetony]

Been "escorted" to hospital by the police chasing your ambulance?

Been told by the psych team you're fine and there's nothing they can do?

Pull up a pew and have a w(h)ine. No judgement.

My name's swiss and I'm borderline. 2 weeks ago I was taken to hospital with a police escort and discharged 12 hours later. A follow-up appointment with the clinical director of the mental health services ticked a box or two but they've no plans to see me again.

I'm off to see my new GP tomorrow to ask for help (attention seek bien sur).

Wow services are sooooo shit for those with bpd aren't they, this is so sad. I only see my GP as cmht discharged me as I'm on "appropriate meds".

Sooooo anyone else up for working out BPD Bingo? (I referred to it on another thread and made me think!) Or maye it shoud be Bullshit BPD Bingo!

So far I have:

• Attention-seeking
• Manipulative
• "Inappropriate" (ha!) anger
• "Reliant on services" referring to needing help that would be given without a thought if you had a different dx

Any more of the lovely judgemental phrases to add?

It's not just borderline though. I was told I was becoming "deskilled from using mental health services" and I have bipolar. It's just that the person I was talking to was an arse.

There is no help out there as there's no money. Out of my circle of friends I have one chap with schizophrenia who has been discharged from MH services as he's on appropriate meds, has had therapy and hasn't relapsed in a while. He broke his legs from jumping off a bridge last year. Hardly stable.

Another friend has been discharged back to the GP as he's stable on meds. He has bipolar and some real issues, but they need to reduce their caseload as in our area front line staff are about to be cut by 25%

Recovering isn't about being out there with the right support, it's learning how to deal with it yourself. It sucks, but there's no service to support anyone really.

I rely heavily on the voluntary sector for support. God knows what I'd do without them.

Conversely, a lovely and very dear person I know has borderline and has weekly CPN visits, has been given lots of support, did 'recovery college' and is now waiting for DBT, as in her area, services are decenty funded, it seems.

One of the loveliest posters there was on the MH boards, whose loss I still feel deeply had borderline, but had community support and inpatient treatment. I could weep still that it wasn't enough to save her.

It's funding, all funding, and the more beleaguered the NHS trust you belong to, the less likely you are to get anything, regardless of your diagnosis.

nananina oh I know where this mythical city is - but it's not in the UK! I am indeed the one who was told to fix myself by reading the royal college psychiatrists website. Instead I've dug out all my old borderline books and have arranged my bookcase with unread fiction. I've also deleted Facebook as I found that very triggering. I seemed to know an awful lot of people (fibbers) with seemingly-perfect lives... Information overload and I'm just trying to simplify my life.

How are you feeling today? Anything positive?

Today was a good day. Children back at school and plenty of bracing fresh air helping a friend on his farm. Also burned a lot of old paperwork which is a small weight lifted.

Also I had to face all the school mums who would've seen/heard about my emergency services spectacle a fortnight ago. Went ok. Felt so safe in hospital. Sometimes I wonder how they can let me out in a house/to drive/care for children.

Tonight I'm going to watch the panorama programme from between my fingers.

I like mental health bingo! aside "move to a big city" and "read the psychiatrists website" I've not had too much crap yet. The ambulance staff, hospital and hv have been wonderful. The psychiatric team were the ones I felt let me down...

Tonight is wine, TV and travel expense to hospital claim form. I did it so hard to do "admin" tasks, I can only really handle a couple a week. This morning was a mad dash to print permission slips for school which I'm positive I handed in before hold. I know it sounds pathetic, but it's a battle for me.

Panorama observations:-

1. The trust chose to close beds... and then pays out for private. Typical "management" short-term savings view. Idiots. My trust actually gets a thumbs up for this as they are in the process of building a ward for MH

2. The noise OMG! When the woman wants her 15 minutes outside and everyone's shouting. I heard screaming in my head.
   I'm super-sensitive to noise - anyone else?

3. "Least Unwell Patient" is shocking. :( There are things I'd like to comment on about that but would be severely against the rules of this board... mental health bingo would probably feature though.

Sorry clock, I disagree. It's not just funding. I suffered so much at the hands of MH services and their cruel treatment of me, as well as the neglect (read page one of this thread for an idea), and there was much more money around then.

I'm finding it really upsetting people saying "Oh, it's funding" when us people diagnosed BPD have suffered like this for years. Funding is just an excuse, they treated me like shit anyway.

ps. Bolded "diagnosed" because I dont think I had it/have it. I almost certainly am on the autistic spectrum though which has been missed.

I'm not really coping right now and have nowhere to turn. I wih I had all that support and a loving partner like others.

I was told by a psychiatrist to move to USA because no one in the UK could cope with me, then they told me that PTSD and depression are not a mental illness they're just another type of being borderline and apparently I must eat only organic foods and get off benefits as benefits shouldn't be allowed for people like me.

I don't know my diagnosis as the consultant wrote to my gp, nine months after seeing me and put at the beginning and end of the letter under no circumstances is this to be discussed with becca or anyone else without my written permission (it was in bold and in caps!)

Its left a huge strain on my relationship with my GP, the letter was ten pages and I can't know what was said, all I'm allowed to know is I am discharged. It's not my GPs fault but the ban is clear.

It's totally unprofessional but when I complained I got told it was up to the consultant. I tried a subject access request : denied (reason would cause severe mental distress). Not knowing is far far worse.

I had my cpn and gp meeting the morning.
Gp was first said he doesn't think the ad I was started on 6 weeks ago will work for anxiety and depression so will probably stop them.
Then cpn discharged me as all I am is over tired and need sleep but will speak to a band 6 person to see if there's a ad with sedative effect they can try.
They don't think my eupd is my problem atm
She also said I should seriously think of giving up breast feeding and while writing this the hv called he's coming out to talk about everything between 4-5.
I just feel I've been written off and useless now.

That is horrific Becca
People like that consultant are the real personality disordered people! Seriously, BPD is highly correlated with childhood abuse... who the fuck can look at an abused child who's understandably grown up with problems and blame them? How can anyone be so unspeakably cruel?

Obvs you don't have to have suffered in this way to be diagnosed BPD but as so many are that's what it amounts to - a sickening, gobsmacking lack of humanity and desire to bully.

I'm sorry I can't say anything useful, just fuming at the... the evil that is people like that! (They'd call my reaction "unreasonable" anger and black-and-white thinking, of course...)

I have also been criminalised due to this diagnosis. Fuck it, I'm still fighting! I had a physical health appt today (endometriosis) and it was so lovely being spoken to like a human being by a medic for a change. I'd like to start a commune or something for us all :)

Monkey What the hell do they think is wrong then? Sleep deprivation? And, d'oh, isn't that triggering the BPD in that case? Why are they suggesting giving up bf'ing? So you can sleep through and someone else feed little one? Sorry if I'm being dense!

Swiss So true about closing beds then paying in private sector. Who thought that was a good idea? There seems to be such incompetence around - I always feel a bit that I'm unemployed, yet these idiots are in positions of power.

cloak I didnt mean to come across as rude before - wasn't really aimed at you just so tired of the bullying system who wrecked my life when I asked for help over a decade ago. I was still a teen then. You're right about a postcode lottery. How are you doing today?

Lovely Nana, and Hug - how are you both getting on today?

LEM, Heaven and KeepCalm too - how are things?

Un MNy hugs all round - come and join my commune

I feel really guilty now, hearing everyone else's stories. I have BPD, DID, complex PTSD, bipolar traits and anorexia. I was very badly abused as a child. I've had at least weekly contact with secondary MH services for a decade. I have a care plan and a cpn. I have a psychiatrist (and metric fuckton of medication) and a social worker. I have weekly psychodynamic psychotherapy with a clinical psychologist and have done for 18 months. My CMHT is now applying for CCG funding so I can have more intensive psychotherapy from the London clinic for dissociative studies. I don't deserve this much input. How crap am I if I have this much support and still can't function? I must be a hysterically bad human being. for everyone else. You deserve better, so much better.

The cpn said she didn't really know much about it but breast feeding could be causing dd to be up and the hormones could be an issue and maybe if they change medication, I also have an Autistic 4 year old so he doesn't sleep either.
She says its sleep that I need and maybe an ad with a sedative but the gp wants me off the ad I've been on for 6 weeks as he says anxiety and depression is the problem but medication isn't the best thing.
I'm just feeling really confused I don't blame anyone i just wish the system was different I don't see how I will get better I feel broken beyond repair I just want to curl up in bed and never wake up but who else would take my dc they are the only reason I don't do anything stupid.
I don't know what I was expecting but feeling written off does make me feel completely worthless.

unweaved Please try not to feel you don't deserve the amount of input you are having or guilty. It's not your fault services vary so hugely throughout the country. I'm sure you are doing your best and regardless of diagnosis whether mental or physical, BPD or anything else you should never feel guilty for having support and especially not if you are still struggling. You are trying. That's amazing!!

Ive been criminalised because of my diagnosis (which changed every five minutes but was always 'basically bpd with different criteria' . The only time I met a therapist it turned out they weren't registered (they were training) and got very defensive when I bought it up. They refused to accept I hadn't been very severely abused as a child (the abuse I did suffer didn't count because I was too old) and, then told me why I self harmed 'really' and why going to a&e was always only for 'attention' (my reply being I went for medical attention nothing else but he refused to accept that). He did not have a clue. That was years ago.

Thank you for the apology. You did come across as rude and on a thread that's meant to be inclusive and supportive, it raised my eyebrows.

I can't comment on your personal experiences, but am aware of the pejorative way in which some HCPs view borderline. I'm sorry you've been so badly affected by poor care.

However bad care from people who should rethink working in MH isn't reserved only for people with BPD, nor is lack of care, early or inappropriate discharge or refusal of services. My neighbouring NHS trust has a PD community unit where people can go long term for DBT and intensive treatment. In my Trust there's nothing for PDs at all. People from my trust tend to fall through the cracks a lot more.

Don't feel guilty unweaved, it's actually lovely to know that someone out there is getting really good help and treatment.

Is there any way of checking online the services provided in the different boroughs, I wonder?

Thing is, cloak, it's not just me who's had those experiences. (I was apologising for coming across abruptly, but still maintain the same POV, if that makes sense.) As mentioned, pre-2007 people diagnosed BPD were not considered to be mentally ill, not offered services, and also excluded from other services.

It takes a long time for those sort of perceptions and discrimination to change. Even a few years ago (say 3-5yrs) there was still an obvious difference between how people diagnosed BPD were treated and how other service users were treated - even though the "official line" had by then changed. This included obvious things such as some areas not even having services, but also the threshold for receiving services as well as the general perception of people diagnosed BPD and how professionals relate to them/us.

It's only now services are so sparse/appalling that they don't even exist for a whole bunch of people, that peope with other diagnoses are receiving the same shoddy non-treatment. (I bet they don't get the judgemental bile thrown at them to the extent people dx'd BPD did pre-2007 though.)

To explain what I mean I suppose you could compare it to other discrimination. For example, although the official line/law etc is against racism, it doesn't stop people making judgements based on race, or low-level discrimination happening. It's like that with BPD - they changed the law in 2007, told the NHS they had to provide services, but it didn't make staff suddeny see them/us as humans, and there's still all the subtle things like how behaviour is interpreted etc.

Ok will stop the essay now, hope that makes sense!

My original issues are bsically resolved, the trauma I went through at the hands of those who should have cared still haunts me. So, yeh, to me it is a vital distinction to make that even when times were better for MH care, people dx'd BPD suffered - it was not about the money.

Sorry, Im not really taking things in clearly, I see you addressed a lot of that in your post. I dont know how to cope with what they did, the prison thread in chat set the memories off sorry x

... Although when you mention poor care i'm interested to know what you mean. Nurses buddying up with abusive partner to slag you off? Being kicked by a psychiatrist? Lied about - said you were violent, and pressing the panic button when you were just sat quietly crying and begging for help? Not letting you leave A&E (whilst refusing to admit you to ward) until they've forced someone you know to get you, taken them off into a side room - you're not allowed in - and said things that mean the person never speaks to you again? (more than once). Had a good laugh at you and told you you're a waste of space, in those exact words? When the police have taken you to A&E. Come to your house and told you what a crap person you are and bullied you until you have to self-harm? Meanwhile no treatment is offered and bar the two visits from bullying CPN no more input at all? When you witness someone trying to kill your partner and become homeless shortly aferwards it is all dismissed as "being attention seeking"? Even the police are put off believeing you (though much kinder than the nurses.)
It's not just a case of saying something a bit off or general neglect - it was serious abuse and pure fucking evil. Dont tell me thats due to money.

I've got another psych appointment, it's in December. Not sure I'll last that long.

Mental health nurse cancelled on me again. I'm not with the effort.

Am very low again today - day 15 when I've felt like crap. Sorry I can't reach out to people. I've nothing to give - it's a lovely sunny autumn day when I would have been out walking in the woods in another life, whereas it's taken me till now to get up, showered - already had 2 crying bouts and a few more to go - I've had enough, but there's nothing I can do. I had 40 mins with a lovely psych on Thursday and he was trying so hard to help but all he could do was increase my lithium from 300 to 400. I'm not bipolar - it's just that sometimes lithium can help in unipolar depression.

Sending warm wishes through cyberspace to all other sufferers.

Nana so sorry your feeling low, I can't be much help either right now but have some and tea

NanaNina You got showered! Go you! That's a huge achievement when you feel as low. I'm happy to hear you had a good session on Thursday too.

You know there will be other beautiful days you will enjoy again. x

Oh bless you swisscheese only someone with MH issues would know what an effort it is to get out bed get showered, wash hair, get dressed, go downstairs. My DP walks 12 miles every Sunday with the Ramblers, takes me all my time to walk 12 steps some days! Thank you Monkey for your post.