Update: The rewriting of care-plans. Speaking up and being listened to.

This is a follow up on a previous post where I said that J was being but into a position of risk because she was expected to simply "choose" not to kill herself and wouldn't be stopped by staff if she tried to leave the ward. A few days back we were presented with a care plan and were invited to add our own comments. 

One of my requests was that where I didn't agree with statements that they could be rephrased in such a way that was positive and involving for J.  We also pointed out that in order for J to agree to the care plan it had to be, well, agreeable, realistic and practical.  We both sent back handwritten notes to the nurses' office on the ward. J again reinforced the notion that the template diagnosis of BPD, with all it's "cooperate or leave approach", was not helpful and that she was suffering from depression and anxiety (with OCD and Bulimia) and did not currently have the resilience and self esteem to repel the overpowering thoughts of suicide and worthlessness. I concentrated my response on overturning the premise that by not actively keeping J safe the ward staff created an incentive for her to act safe (hardly mentioning the negative message conveyed by implying a lack of responsibility on behalf of the 'Trust when it came to duty of care to vulnerable patients). I would be calling the police myself if she left the ward whilst suicidal, and pointed out that I did not believe that expressing a desire to leave  and expressing a desire to kill herself constituted the "ability to make decisions" or  "full mental capacity" because she was unable to entertain alternative scenarios (previous example of this: begging a policeman to take her to a motorway bridge because it was "logical" to let her die).  

Anyhow. The nurses we were talking to on this occasion were pretty smart, inciteful and sympathetic to Jo's needs. Despite what the doctor had been suggesting, they reassured J that at the very least a duty doctor would be called to assess J if she tried to leave, and yes, maybe a temporary MHA Section would be used to keep her safe. 

 Another positive in all of this is that is that J and the doctor are prepared to change her medication.  Previously J's anxiety and a string of "don't rock the boat" locum shrinks had made this difficult to implement in an effective or measured way.  I'm pretty sure that the one thing the Bradgate Unit can just about do right is to monitor inpatients whilst changing drugs in a relatively secure environment. Certainly that's all they seem to do with some of the more "hyper" patients, who literally arrive shrieking and leave with quieter demeanors. One of the nurses has also been writing new sections in the care plan detailing ways they might be able to help with each aspect of J's condition (one-size-fits-all BPD umbrella aside), i.e. a paragraph and action points on anxiety, another on OCD and so on.  The nurses seem to be finding time to talk one-to-one with her as well. 

 It's been a really tough couple of weeks, but J has been trying to be honest with staff about thoughts and plans she has about suicide and self harm.  I won't go into details but there's been a couple of creative near-misses, which have led to J agreeing to have her room stripped, leaving her with an unfoldable "seclusion blanket" and she is currently wearing an indestructible "seclusion gown". The heating was broken in her room and another ward demanded the borrowed seclusion blanket back.  J chose to be cold for a few hours, not trusting herself with normal blankets.  It was returned and the other ward was admonished because J's legs still have odema which make them an "infection" issue.  There are many odd institution-centric stories to tell just from the last handful of days, but thankful, in terms of day to day ward care it's so much better than some of our previous experiences at the Bradgate.

  The doctor, who at times, has a very human side, hasn't challenged our alterations to the care plan and is praising J for recognizing and communicating her levels of risk.  Also she is proud of J for committing to the plan to change medication during a 6 month voluntary stay.  

J is very scared and still suicidal, but both of us, no matter how cynical or skeptical we are, seem to be happier with a plan from which we can add flexibility, if that makes sense? Like the first draft of the care plan - it's easier to change once it's in writing.  J has been reassured that she will not be moved from her room. It's normal ward practice to swap and move patients around depending upon many factors which make perfect sense to nursing staff, but for many patients this can be almost traumatic and triggering emotionally. Even if this does happen to J, at least we know she can't be moved into a shared dormitory, because there are none on this ward.

Also, I'm surprised at how much the nurses and the doctor seem to be valuing my own input regarding her care.  My name appears on the paperwork as the partner and carer and I'm seen as an important aspect of support in aiding her recovery.  It's like a strange moment in a dream when you've been shouting forever and they actually turn and look directly at you, and stranger still, they are listening. Again, unprecedented! 

(Posting this now, may return to edit later) ;)

NHS mental health care ‘pushed to breaking point by lack of beds’ (The Guardian 01.02.15)

NHS mental health care ‘pushed to breaking point by lack of beds’ The Guardian 1st February 2015

http://www.theguardian.com/society/2015/feb/01/mental-health-care-pushed-breaking-point-lack-beds-psychiatrists-nhs-hospitals

Low Point of Week / The patient is free to go (and kill themselves)

Low point of the week:
My partner ringing me from a locked mental health ward begging me to bring in paracetamol so that she can take an overdose. She believes totally that killing herself is the right thing to do.

Absurdly, a few days on from this, her doctor has gone back to the stance that she must be free to leave the ward if she asks to, even if she is stating to the nurses that she intends to kill herself. Apparently this is to empower her and imbue a sense of responsability. The nurses are not to stop her and she is to sign a form absolving the whole service of any further duties towards her. This has been written in her care plan. I will be adding my own comments tomorrow. I will be requesting that she is to be kept safe, especially when the treatment is failing. Perhaps she can be kept safe until alternative care can be provided. Also I am considering writing on the care plan that I will be calling the police if I know she is suicidal without supervision, i.e. released from care without sufficient community care provision. Naturally this may invalidate what they are trying to achieve, but J is very scared of herself and what she might do. Considering the days leading up to admission, I am also terrified of what she will do. The psychiatrist has said on three occasions that “no-one can stop suicidal people from killing themselves”. I have pointed out that locked doors stop suicidal people and that since I cannot legally imprison my partner or take away her pills this is one of the few things a mental health unit is good at. Unfortunately this is the Bradgate Mental Health Unit (Leics PT NHS) and they are also rather good at getting into the newspapers whenever there is an inquest about a patient who absconded to kill them-self or a patient who died on the premises.
Remember that this is the better ward and that so far the nurses have doing their jobs well (as opposed to the triggering negligence we have witness at first hand on other wards).
Strangely (to me), this doctor is not a fool and I respect some of her opinions, but I resent her the gambling with J’s life, with what is a cynically shallow minded behavioral contract and the implication that J’s ability to “make a decision” means that she is “well” and not vulnerable. Decision making does not equal unclouded full mental capacity. These professionals at this unit believe their job is only to treat the cases with predictable turnarounds, and they don’t acknowledge that all of the other services see mental health units as places of safety, regardless of treatment results. J has finally agreed to a change in meds. I guess one thing these units are also good at is monitoring meds. Sometimes you hope that you can just phrase something in the right way that perhaps the world of the psychiatrists and the mental health service might respond in a way that mimics would you would expect of a caring profession. I never thought I’d be typing a phrase like that. I used to be so suspicious of critics of therapists, psychiartrists, or even NHS mental health care. Hopefully my next post will not be my partner’s obituary. Hopefully.

High Point of Week / A bit like a book club (carer support)

High point of the week:
I managed to attend a Carer’s Support Group. It was less formal than I feared. It was a bit like a book club, but without the books, and more emotional pain.
It didn’t feel too clichéd either. No Alcoholics Anonymous self-introductions and confession. “Hi I’m ___ and I struggle with trying not to murder the person I care for…” That’s a joke, people, a JOKE. Besides, she’s too busy trying to kill herself, to give me the pleasure. * snare drum *
Actually, I’m still at odds that I’m allowed to cash in emotionally on just looking out for my partner. It feels a bit wrong for lots of reasons, obvious to anyone who is used trying to put someone else first.

January 16, 2015: Tough Love for the Suicidal

Scary times for J and I. Bad crap has been happening. After a dramatic few days, J was finally readmitted against her will to a mental health ward (assessment/containment; the monitors are from when we were in A&E) There’s almost too much to go into here. Again there was a struggle and delay in getting her onto a modern, safe ward. But even when the staff are nice/human I still don’t understand why they talk to her a certain way, like she’s a naughty school girl. She’s depressed and in a lot emotional pain and they seem to think she can just switch off the suicidal thoughts. Even if the diagnosis was correct, it’s like institutional racism. Every piece of history is used against her, no responsibility is taken by the service for flaws in the treatment (or lack of) they provide. Imagine if every part of your being was already a mixture of painful feelings of guilt and desperate apologies because you feel you don’t deserve help but then you were expected to not blame yourself whilst being told that all actions are down to your own choosing, and that all you have to do is to decide not to do things. Imagine trying to take your life repeatedly because the intensity of those feelings is too great, the depression overwhelms you, the OCD and anxiety cripples you, only to be told that you are not actually suicidal, and that you can decide not to self harm or try to kill yourself. Imagine being that person’s partner, who, when trying to prevent catastrophic events you have to physically fight with them and call the police, only for it later to be implied that you are complicit in this illusory dance of attention seeking. It’s like the professionals switch off the empathy and sympathy and “tough love” is the only way forward, and this is before they read the aging notes and ask you what /you/ think the problem might be.

Bosworth Ward Bradgate Unit still specialising in poor care

I had to ring J's ward today to demand that that give her requested PRN medication, after they'd been triggering her all day with general fuckwittery, including withholding important parts of her lunchtime medication. I stopped listening to the explanation about lost keys and incidents, because whilst they were talking to me was yet more time taken up when they could have been calming her down verbally or with medication. She was told that she was being moved from her room to another ward at 8.30am and was still distraught without being moved with packed bags at 4pm. She was repeatedly moved out of the lounge and communal areas because her crying "was upsetting other patients". Again, the dysfunctional staff seemed baffled by suicidal feelings and anxiety. Eventually they move her and she has walk along ridiculously long corridors to the other side of the unit (I'm pretty sure there are shortcuts and wheelchairs) carrying heavy bags - neither of two accompanying nurses offered to help, in full knowledge that anxiety makes her back and legs give way. She can barely walk 20 yards on a good day. There's no seats in those long corridors. if only, I'd been there. Yesterday they seemed okay, almost redeeming themselves, but today, it was just like last year when we had all the problems on this same ward.

Apart from tweeting about these idiots, I've been ranting on Facebook and other social networks, because lets face it, the CQC is utterly ineffectual, Customer Services just delay complaints and the Press just rewrite the story how they see fit and miss the point. There is no immediate recourse. The best I can hope for is a continuous naming and shaming of these bad wards. I'll be recording the odd thing here also for reference later, but mainly to stop myself going insane.

(Fb rant...)
This may seem a little dark, after today, now she's off Bosworth Ward (where she was admitted again recently) and now in a better ward. If Bosworth was burnt to the ground and some of the staff were scarred for life and perhaps treated in a hospital where no one gave a fuck, I would stand and be counted with the arsonists. Things just for a moment were going okay, naturally she is still very unwell, and then the shitty dysfunctional robot staff just keep making one amateur mistake after the next, almost like they want her to freak out and do terrible things. (I reserve the right to delete this rant later to protect the innocent whilst damning the incompetent)
When I got shit at my job, (and amongst other reasons) I left.

That ward needs a big sign above the door "May contain triggers" perhaps with a list of the number patients who were allowed to kill themselves and self injure whilst in their care. Ha, like a fucking league table in comparison with the other wards. (I can provide links to newspaper articles relating to the inquests)

Incidentally, her community care had been improving, but I'm in no mood today to sing the praises of Leics NHS Trust's today.

Accident & Emergency

(Own photos 9.1.15)
Believe almost everything they say in the news. The A&E departments are not getting any better. We were there again yesterday. So many issues and problems with the NHS as a whole, but at the same time, well paid qualified manpower on the ground-floor would make a massive difference. Again it was sickening, horrible, disorientating, lots of unnecessary distress. The paramedics queuing for ages with trolleys off the ambulances - and that’s the rapid way in. One thing you notice in the daytime, is the high numbers of old people, the vulnerable and disabled, but yes, at night there’s more loud injured drunks. Don’t believe all this crap about people going to A&E for the wrong reasons. If the service or support isn’t there in the community and your walk-in centre has been closed down, you certainly don’t go to your GP with a broken leg, a gaul stone or smashed face. Pressure on A&E from what I have seen has nothing to do with people with flu or hypochondria. All that triage happens way before you hit the assessment bays. No-one in there didn’t need help. Even with fast-track resuss’ you sometimes have to wait. But, hey. Even if they are listening, the trust boards, commissioners and politicians shrug. “Austerity” they say, “we must do our bit”. There isn’t a war here! The hospitals are not being bombed, and yet you all still talk like Churchill fending off the Nazi menace, as though plucky resilience will see us through. “Quick, get the porters to wheel these people to EDU, they can languish there but they won’t counted against our failed waiting targets…”

In the hospital proper, finding a doctor today, just to get discharged from a ward was nigh on impossible. Finding a wheelchair was just as hard.  All the meds were wrong. Because it’s the weekend. There’s so many stupid retrograde working practices. Privatization and outsourcing arguments aside, so much could solved with intelligent investigation on a busy night in A&E. Dear God, save us from all this idiocy!