Strangulation, real and metaphoric. Meeting with Ward Matron (J's care, Bradgate Unít update)

I'm trying to remember what was said today in a meeting we'd called with the ward matron, except that my mind keeps straying to the fact that J tried strangle herself in her room with a towel this evening. Back in town, I missed a text from her to call and so I phoned and her voice was hoarse, so I immediately phoned the ward office and told them she was "ligaturing".  The person on on the other didn't  inspire confidence, there was no urgency, no "thanks, don't worry, we're on it". Later J tells me that the rolled towel had been around her neck for 45 minutes whilst she was in her room.  There's some confusion over the length of time at which the nurses are expected to check on her. No-one seems to be registering that we both feel she is very unwell this week.  Apparently one nurse offered to talk to her after they had taken the towel off her and checked her oxygen level, but J, declined, not feeling that that many of the staff have the skills for a sympathetic chat, and then they just left her, alone.  Later a nurse had come back regarding an issue with meds, but I don't think this was good enough. I was on the phone with her telling her to stay in line of sight of nurses, but she wanted to stay in her room and didn't trust the HCAs, because they hadn't even checked on her. I don't believe anything was taken from her room or a proper discussion about risk was had (ironic because yesterday a charger cable was removed from her  without her knowledge room without so much as a note left between staff by way of explanation). Later a nurse said he might be suggesting that she be put on a higher level of observation. Apparently when they were coaxing the towel from her he had said something along the lines of "doing this will only make them discharge you earlier" since she is terrified of the prospect of being sent home in two weeks without anything in place, or her still being too unwell.

In relation to this, some of the meeting with ward matron was useful for sharing perspectives.  Apparently the locum doctor had actually /added/ a week to the discharge date.  And since there was a belief that J was apparently doing well three weeks ago that this was all in line with their plan, the discharge date having been set in stone a long time before.  J and I have no memory of being told a discharge date, and we assume that if we had we would have written it in at least one of our diaries. Nonetheless, one would assume that a plan of recovery would be measured against this date and professionals working with Jo might have mentioned how far or not she was within this arc of recovery.  I'm pretty sure the discharge date was news to the her Named Nurse this week, and is definitely not written on our copies of the care plan.  Anyhow, J was asked to list reasons why she should stay longer than the discharge date, but yet again, we feel like we're fighting for things and having defend very basic rights to basic care.  

The ward matron conceded that there had been a communication problem regarding J's room being given away and her possessions being put into storage, apparently on the Tuesday of a week, whilst other staff told her the room was still hers right up until the moment she returned to the ward.  The plan had been not to tell J of the change, so that when they did, when she returned, they could do so in a sensitive way and control the situation.  I think we agreed (J and I, at least) that this had been the absolute wrong decision, and that even the touching of a patient's property shouldn't occur without their awareness.  The ward matron seemed disappointed by our relating of the dismissive nature in how J was told, and that she had been told she was "lucky" to still be on the same ward. She also didn't seem to understand why staff had been reassuring her (possibly lying?) that the room was still hers to use.  This explanation unfortunately is worse than my excuse for them, i.e. that they'd just screwed up at the last regrettable minute.   I think that there was actually an apology here, a brief moment of recognition of why J was aggrieved.  She said that she would be bringing up the issues with staff, especially those caused by poor communication.  This feels like a sort of "training feedback" topic, as opposed to something which might repair J's relationship with staff in the short term, which is what I wanted an outcome of the meeting to be.  

I do not get the sense that the staff are prioritising J or her risk in any way at the moment, and frankly, from what's she's quoting to me, I'm not surprised she believes the nurses just want rid of her.  One explanation is that they are very busy, but knowing this can make it much worse when trying to ask for help, which J is doing, i.e. asking for help, sharing her level of risk, or at least she is informing them that she "wants to die".

Apparently there has been some real concern about the mention of a "suicide pact" between J and I, which made me laugh, since normally they infer that J isn't even suicidal.  I pointed out to the ward matron that when I with Jo, I'm usually looking out for her safety and that this had come from a lonely and physical unwell place.  They were treating it as a "safeguarding" issue, whereby I could be perceived as coercing J into killing herself.  I told the matron that most of my own desperate thoughts had been brought on by the shitty time J was having in the Bradgate Unit.  Perhaps what I should have said is that the wards have probably coerced many patients to suicide through neglect and prejudice.  I also pointed and that giving away J's cat would take a lot of planning.  So, instead of, "her carer is unwell, how can we help?", maybe it's "the boyfriend is a dangerous influence, get him on a register".   Again, the issue of the crap time J is having in their care isn't discussed, and now they'll think she's mainly triggered by me.  Thank god we don't have children.  Can you imagine what a social worker would have made of this?  J talks about suicide, attempts suicide on many occasions and she's lucky if she can get an appointment to see her CPN; I mention (in a hypothetical context) suicide, is reported second hand by someone they don't always believe, and they hit red buttons without a second thought.  We found this funny (just very surreal), and I was surprisingly reassured by the fact that they actually have safeguarding policies.  It's a shame they don't have policies on self harm, or training, or a sense of continuity, compassion, communication, people skills, ethics, I could go on, but I'm too tired again.  

I got to chat to the lady from Rethink today about my own woes, and she had some prompts and pointers for (in the community- ) care packages.  You know, that thing the Unit thinks it can magic out of it's arse in a week, and then it fails because no-one knew the meeting was happening.

There was other stuff I need to record here, but I think that's all I can stomach to share for the moment.  

My letter to doctors re. J's possible discharge from mental health ward in two weeks (rough draft)

(Own Address)

FAO


Dr K-r (acting consultant/locum)


and


Dr A-i (ward consultant, responsible clinician) 


H-Ward, Bradgate Unit, Glenfield Hospital, Groby Road, Leicester LE3 9EJ

cc. Ward Matrons (+named nurse)


cc. J-

8th July 2015

Dear Dr… et al.

Discharge of J- (deleted) H ward

Ward rounds and arrangements for discharge.

J has told me today of the unexpected news that the date for her discharge has been set for 21st July, 13 days (8 working days) from today, as decided by Dr K-r (locum/cover). Every time J- has been readmitted to hospital, questions have been asked regarding the speed of the previous discharge. Sometimes there has been concern at the lack of an effectively gradiated discharge plan or well spaced leave, or co-ordinated support with the community team, or even a clear plan in J’s notes for readmission for when she is in crisis. I am happy to attend the next two ward rounds, or a discharge meeting, but would prefer that there will also be present professionals who are consistently involved in her care. These must include most of the following: the consultant who has been overseeing the medications overhaul, Dr A-i (ward consultant, responsible clinician); J’s CPN, the only consistent member of staff at the Community Team, S- H- (CPN and Care Co-ordinator); perhaps the community OT, J P, the Ward OT, A, and very importantly, nursing staff who know J well enough in terms of risk and understand her personally, i.e. a named nurse (N) or nurse of J’s choosing (such as Na, if N is not available). If possible, or pertinent, a senior member of the Crisis Team, so that if there is an agreement for ongoing support, or a conditional readmission plan, that it is put in writing or communicated to other staff in that team, to avoid repeat failings. I apologise if I am stating anything obvious here, but I have been to meetings in the past where there is barely one professional present who has a working relationship with J, which is not acceptable. J’s GP has also told us that even he is sometimes not kept informed by the LPT of changes in her treatment.

As well as establishing that J is in very different state to the distress she was suffering when she was first admitted to hospital, I hope topics being discussed will include making sure J is now on the absolutely right medication, and that there is a continuity of useful or new therapies, such as rape counseling and maybe pointers for the community OTs. 

Due to personal and part time work commitments I may not always be available as an escort if J is required to have sudden increase in leave-days in the next two weeks (especially at this length of notice). Since she, at this moment, is still ward based, you may need to find staff to accompany her on those extra visits. A rapid increase in leave over a short period of time right before discharge is not my preferred plan, and I’ll be happy to help with alternatives to this (given enough time to plan ahead).

Total length of stay vs. progress in treatment and setbacks

I believe that after her recent admission to the LRI for acutely painful and possibly deadly cellulitis, (a complication from her legs being swollen, in my own opinion, a side effect from her mental health medication), a clumsy and careless readmission to Heather Ward caused the second major setback in her recovery. J has detailed this in her green notes sheets, i.e. misinformation about the status of her room and possessions, manhandling and damage to possessions, the lack preparation or warning given for the room change and total disregard for her OCD upon her return, despite repeated mentions and highlighted triggers in her care-plan, which her named nurse has carefully revised with us to the letter. We are grateful that she is allowed to remain on H Ward, but I am still disappointed with utter the lack of tact and empathy, so often robotically brushed aside at the Bradgate Unit with generalised terms like “ward policy” and “acute care”. The first major setback was the depersonalizing and disempowering referral process to the out of county Cambian Service for long term residential care. J did not instigate either event, and yet there will be no recompense in time lost during this ward stay. It has taken extra time for us both to rebuild trust in the whole process of mental health treatment after one doctor allowed J to leave the ward and walked with her to the main road where J was in real danger of throwing herself into traffic (which I witnessed at first hand). Presumably that doctor didn’t believe J was suicidal (a mistake based on assumptions around her diagnosis, which we are trying to challenge). The same doctor inferred that J’s life was worth less than the seclusion gown she had been wearing, because to leave the premises wearing it constituted a theft of hospital property. After a month of not making any changes to J’s medication, as agreed at her admission, a locum doctor and a junior doctor told Jo, whilst sectioning her, that they did not believe that she heard voices (since then, Dr A-i’s increase in antipsychotics has helped with this). This would have been devastating for anyone, i.e. not to be taken seriously, realizing that you had been misled and stalled for a month, whilst your rights were being taken away and you were to being forced along a treatment path without any say. It may seem churlish, but still relevant, to mention a long period of many weeks of the bullying in plain sight of both patients and staff by an aggressive patient (on a ward for vulnerable women), when J was allowed to be targeted specifically, making even a trip to the kitchen a terrifying experience. After all these events, in this ward stay alone, I still consider Heather Ward to be one of the better wards at the Bradgate Unit, and J’s relationship with the staff to be better than most from the past.

I am hoping that these disruptive ward-caused events (and triggers) are taken into account, especially from our own perspective, when trying to take a broad view of progress from admission to discharge. Also I would like to be reassured that even when discharge dates are set that if J is not well enough to return home that she will not be sent. 

Please feel free to share this letter, if required,

Yours faithfully

(My name)


Partner, carer (part time) for J


(Address, phone email etc)

Own mental health

I think I've made a mistake.  I felt extremely down whilst I was unwell with a stomach bug a couple of days ago.  Throwing up always compounds feelings of isolation for me.  

Suddenly all sorts of very dark thoughts seem to make logical sense, when given a few days grace they seem more like delerious shadows.  I had been so knocked back by J's let downs in the hospital, possibly because whenever things don't go right they make me reflect on all the other bad experiences she's had as a patient (and I, vicariously, as her partner and carer). I didn't want her to suffer any more.  I was (maybe am) pretty unhappy with where I am in life and the only real responsibility I have is to her cat, Lucy.  I made a list in my head of people who could possibly take Lucy in, which would then allow J and I to take our lives together, thus ending her suffering (and mine). I would try never to leave her alone, and I know that this looks like a suicide pact.  This idea isn't in my head all of the time, but it does emerge partially formed when things are dark.  Like J, I never think of physically running away, for some reason my brain short circuits to the darkest thoughts, but they are merely a negative coping strategy. I.e. I wouldn't have to worry about next week if I was dead.

Somehow and at some point I revealed this to J, not as a plan, but as an example of how low I was feeling and how askew my view of the world (and her treatment) was.  It's difficult for me to get help from the local NHS because they are the ones who have fucked up so much in my personal and professional life (ex drop-in worker).  Naturally J is worried about me and has shared this with the nurses (I didn't want to add to her pain, because I'm meant to be her "rock").  Anyhow, I'm worried now that this will all confuse issues, rather than solidify the provision of any extra support (which doesn't exist).  The mistake is that they might think I'm a sort of danger around J, when in fact the act of giving away Lucy (the cat) is hard enough, the idea of my own suicide came out of a moment of frightened lonliness, which is not the same as when I am with J (when we look out for each other).

I'll find people to talk to, after all, even though I felt a little put off at a recent meeting, this is what the Rethink Carer's Support have said they are there for.

Edit/postscript: I've now called someone from Rethink and made an informal appointment in the next few days to chat and offload.

Tick box ward round ( J's care, Bradgate Unit )

J's regular ward consultant (Dr A-ia) is on holiday so this time the locum (temp) doctor is Dr K. Incidentally, Dr K was the consultant who was supposedly filling the long outstanding vacant psych post with the community team, but he too (like several before him) had mysteriously left after three meetings, to be replaced by random locums (none of whom wanted to affect real change to J's treatment or diagnosis).

With little regard to recent set backs (recorded by patients on a "green sheet" before ward round) or any discussion with regards to medication, Dr K has decided that J will leave hospital in two weeks time. This discharge date has been set with the hope that someone can attend the next ward round from the community team, to make sure that J is adequately supported at home.

J tells me that she wants to die. I've thought about ringing the ward and saying that I plan to change the locks to her house if she is released home that early.

J has mentioned the discharge date to a nurse dispensing medication, who knows her well, the nurse seemed very surprised. I can only hope that in this case putting a date on paper is a tick box exercise and that nurses will not let J come home if they feel she is too unwell. She has had three visits home so far - mainly just for the afternoon. As always her admission there was talk about "doing things properly this time", which, as always they won't. 

Not sure what to do. I'm really hoping that nurses who know J will try to get them to reconsider their decision.

J tells me she wants to die and has told a nurse recently that she plans to walk to the nearby A50 and throw herself into fast moving traffic. We know this would be easy to do because she took that route when Dr D, convinced that she wasn't suicidal (despite what nurses were saying), allowed J to leave the ward and even walked with her to the road (see much earlier entry).

She had been improving at a moderate pace, but the Bradgate Unit always seems to find new ways to trigger her. As always, I'm completely torn, but I know she wouldn't last more than a couple of days at home at the moment. One wonders what miracles can occur in fourteen days.

Everything you know is wrong

Today the deputy ward matron told J "That it was never the case" that her room was being held and that her things would not be disturbed (J's OCD can be a big issue for her as described in her care plan). I swear that I had a phone conversation with the same deputy matron last week telling me that J shouldn't worry about these things. Staff who were with Jo throughout the week she was at the LRI said that the room hadn't been given away, but when she returned to the ward at the Bradgate Unit her possessions were in carrier bags in storage and a "more unwell" patient was now in her room. 

Team decisions which go against J always have a "revisionist" spin on reality the day after. 

Is this what psychosis feels like?

She says she is feeling as suicidal as when she was first admitted to the Bradgate Unit, over 5 months ago. 

Despite what it says it your care plan ... (Bradgate Unit/ J's care update)

Quick update. After several days, nearly a week, at the Leics Royal Infirmary for a nasty painful bout of cellulitis in one leg J has returned to the familiar territory of H ward. In order to get her treated and keep her at the LRI, the Bradgate (MH unit) staff had repeatedly promised her that her room wouldn’t be given away and yet when she returned tonight it had been given to a new admission. We’d all been working hard through the week to keep her calm. Apparently the room had be held until yesterday (which is actually really impressive, because in an acute care unit you usually have to be very Buddhist about not getting attached to anything). This involved moving her things out of the room and possibly into storage and then out again to the new room (without her knowledge), and it looks like another patient has been moved off the ward. Stepping right back, I’m glad that she’s still at H ward with familiar staff, but it’s the way we weren’t given warning in which to prepare J. In fact, quite the hospital, a nurse had said the room was still safe/secure. It’s still so much better than other wards, she could have been placed in a dorm or discharged, but this was triggering for her today. It’s sort of an OCD thing, as well as her anxiety needed to be assuaged by visually events before they occur. It’s peppered through her care plan that she mustn’t be moved. I know it sounds unreasonable, but it would have better for her if we’d all been kept informed, so as to prepare for change.
(Welcome back to your short term therapeutic home of stability, oh, by the way we’ve moved you up the road.)
It’s super hot at the moment in the UK, and everywhere airconditioning seems to be broken. In the new room she says she can’t slide the window open (there’s a thick inner mesh for security, at least these windows open) because it backs onto where patients smoke in the garden. I know these are little things but when you don’t feel in control of anything it’s all the little things which trigger. 
Like I said, I’m relieved that she’s still on the same ward. Continuity always seems like such a luxury. Transition is bad for J at the best of times.

BBC Article: Emma Carpenter inquest: Anorexia girl 'manipulated' weight

http://www.bbc.co.uk/news/uk-england-nottinghamshire-33321059

“The psychiatrist added she felt "out of her depth” with the situation and was “struggling to obtain Emma’s actual weight”.
In November, the teenager was admitted to the intensive care unit at Queen’s Medical Centre in Nottingham.
She died a month later of organ failure and with a body mass index (BMI) of 10.
The NHS says the ideal BMI for an adult is between 18.5 and 24.9.“

I don’t understand why this person is dead, even if she had somehow miraculous fooled professionals who were weighing her. Even from the moment she was in intensive care (for a month), perhaps more could have been done. There’s something missing here. The article blames the patient and infers sympathy upon the community psychiatrist.