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.

Tumblr Query: Which ward is J in?

What ward is your wife in?

Anonymous

I only name wards when I want them to be shamed. ;) Bosworth Ward at Bradgate Unit needs raising from the face of the Earth based on the two admissions she had there. J is currently in H- Ward, which specialises in care for vulnerable women. Apart some bullying from other patients who have now been moved, generally it’s the best ward I’ve seen to date at the Bradgate Unit, some of the main nurses are pretty clued up on day to day issues which were rarely addressed on other wards without a lot of pressure from both of us. She actually has her own room. Some of the wards at the Bradgate still have dorms. There’s confidentiality issues here when it comes to even naming the Bradgate Unit and Leicestershire Partnership Trust, but I still don’t understand why they are such slow learners in the face of so many deaths and absconscions (see news articles). Anyhow, it’s a better ward, when the doctors and agency staff aren’t being jerks. ;)

Crisis Care "inadequate" (BBC / CQC report)

The Care Quality Commission has published a report of the state of MH crisis care in UK.
BBC Article: http://www.bbc.co.uk/news/health-33071069
CQC Report: http://www.cqc.org.uk/sites/default/files/20150611_righthere_mhcrisiscare_full.pdf

Also Guardian article:  http://www.theguardian.com/society/2015/jun/12/ae-staff-attitudes-to-patients-in-mental-health-crisis-often-shocking

J's care at Bradgate Unit - response and update

I’m having some trouble responding/reblogging this post http://belis86.tumblr.com/post/120194385411/i-wanted-to-thank-you-for-your-blog-its-not-news by @bellis86
But also this is a general entry about J’s care which I find useful to record my thoughts on here on Tumblr. It stops me from completely detonating at the wrong moment in front of professionals trying to help her.

Apologies if I’ve double posted - will fix in the morning.

–
I’m still very confused about BPD, because of the all the mixed messages from staff. Then when I read descriptions myself, only one of two points match J, out of fifteen or so symptoms, which is is the basis for us challenging the diagnosis. 

I was just about to respond to your message about specialist care (sorry for the delay), but it might help me to share the thoughts here as well, and provide a bit more background to J’s recently planned referral to a specialist unit away from her home area.

I totally agree that some sort of specialist is required, the Bradgate Unit doesn’t even have therapists or counsellors (apart from very occupational therapists who have the broadest of remits, cooking and colouring etc). However her possible transfer to a specialist private PD unit in Birmingham for up to two years, for mainly DBT, which she has done a lot of, just didn’t add up. We were being faced with too many “what ifs” and the assessment itself was poorly implemented, and decisions were being made without her consent. Her self harm increased during this process because she was terrified of being sent away whilst under section, but also wasn’t being consulted. This compounded the view that somehow this /acute/ care ward could not cope with her behaviour. We recently acquired the patient notes for the assessment and they were peppered with contradictions. An explanation for this might be that they (the private unit) were making her match a template or nudging a point score. Strange things like, (paraphrase) “poor presentation and hygiene” (J’s OCD means that she wants to shower at least two times a day, but she’s cut back to one shower with rituals, she’s squeaky clean), “mismanagement of medication” (yes she ODed, but her phone bleeps reminders for meds with an efficiency which puts the ward clinic to shame, very little prompting required). They were references to very old notes and quotes which we found unrecognisable and unsourcable - negative anecdotal statements from nurses from previously disruptive ward stays when she was highly triggered (on a crapper wards perhaps?). This shit is worse than a criminal record because they don’t have to delete it after several years, it all just stays there, as does the diagnosis of BPD - which somehow becomes perjorative when she is in crisis. Even though J is supposed to see this part of the assessment, the doctor kept it from her until the last minute because she knew it would be upsetting and wanted to talk to the private unit first. The implication being that the doctor wasn’t too impressed with the way it had been written either. 

The consultant decided (in a closed door meeting) that it would be better if J stayed at the Bradgate (where she currently was). This was a relief to J, myself and a couple of the nurses who had been investing time in J and had also been to some extent locked out of the referral decision process. During this time J has even started to challenge the MH section. I think by the time the tribunal occurs , there’s a chance that she’ll be a voluntary patient again. My point here is that at the start of her stay, and now, I’m desperate for the wards to keep her safe, and Mental Health Act Sectioning was a way which allowed them to do that, especially when J didn’t trust herself (she’s fairly honest about risk, it’s just getting staff to believe her). The locum doctor who set this process in motion also said he didn’t believe that she heard voices (she had been begging for an increase in anti-psychotics). That feeling of powerlessness means that the level of trust with the doctors and her own ownership over her recovery were reduced to a stage where she has to challenge this power legally. Get this. She’s challenging the Section, not because she wants to be released back into the community and home, she’s challenging the Section because it’s the only way she can guarrentee that the doctors won’t force treatment upon her, like being transported against her will to somewhere else, or ECT. That’s like having to divorce your husband to save the relationship. It’s crazy.

A few months back I had hoped that maybe this private unit (which she is now not going to) would have something new to offer (perhaps skme skills, perhaps for a short stay), but all impressions and gut instincts are now saying otherwise. I mean I’m not much of a fan of the Bradgate, but these guys had screwed up two assessments so far and the doctors weren’t even telling us why they thought J would be better there - just felt like clear-the-bed maths. J is a challenge because she may have a complicated diagnosis (depression, OCD, Bulimia, GAD), but she’s not “challenging”, not like some of the other psychos I’ve seen screaming at patients and staff. 

We’re still waiting on some phone counselling for rapes. It was only recently that a doctor and nurses thought this might be useful - up until now all of the focus has been on childhood experiences (if any at all). How can professionals dismiss traumatic events from adult history? Maybe there’s a PTSD solution in there somewhere, but no, apparently it’s all about J having to learn to show “restraint” and “take responsability” when she is suicidal (which apparently she isn’t, we’ve been told, but they write “suicidal ideation” and say her plans and thoughts are “ambivalent”). 

It would be nice if key professionals stayed in the post for longer than a handful of months as well. But that’s a whole other moan, which the LP Trust won’t take any of their own responsability for.

Just to end on a positive note (I may post this as a separate entry) J had her second visit home today. Apparently she’s safe to be alone with me, not needing a nurse as escort (this is most curious, because she’s also been with me when she is in danger). Funny thing, MH sections. Very flexible when they can’t spare the staff. Focus, stay positive. She gets to come home for a few hours and spend time with her cat Lucy, but the whole experience can be emotional exhausting for her. It’s early days, but the climb back to something a bit like normality has started.

Thanks for reading.

J's care at the Bradgate Unit, update. Diagnosis bigotry continues.

I’ve already typed quite a bit today when I should have been working on other things, but I feel that a small update about J’s care is important here.  Forgive me if I’m repeating myself at all.

Whilst she was being re-sectioned (3?) the locum (temporary) consultant revealed that they did not believe her when she said that she hears voices and hallucinates spiders.  Had we known this months ago we would have asked for a second opinion, this explained why the replacement anti-psychotic was never increased (J had begged and begged for it to be increased, but this fucker was just treading water with us).  This locum also put in place what was an old idea, that of the sending of J away to a unit in Birmingham which specialised in treating people with personality disorders.  The treatment would last between one and half, and two years.  J owns a house (which I stay in mostly when I look after her cat). She would lose benefits which help towards the mortgage and would eventually lose the house.  When I’ve visited her on wards, or read patient histories at the drop-in at which I worked, there is always someone on the ward who is currently homeless or is about to be.  In fact in some ways the problems is similar for those who go into prison and lose control of accommodation “on the outside”.  The system is so segmented that jaded doctors don’t seem to see any larger picture, because they can simply refer a patient to an in/outreach team or a social worker.  J and I are very aware that there is a shortage of beds and that every few weeks the consultants meet with bed management and there’s a type of struggle to set discharge dates for patients.  Feeling more suicidal than ever, not helped by the re-sectioning J had taken to ligaturing (this is when a person tries to strangle themselves), this naturally went against her, and it doesn’t help when the common view of self-harm or suicidal behaviour is that it is a symptom of PD, and certainly not a type of coping strategy.  A date was rushed forward to have a meeting about sending her away.  Her CPN (the only professional in the community who knew J, now that yet another consultant had left the team)  couldn’t attend on that day, and it was said that he would be threatened with a disciplinary procedure (!?).  Three of the nursing staff who know J well were not present in the week running up to the meeting, although a sympathetic matron was there on the day. The consultant who had taken over from the locum had barely chatted with J.  So we had to assume that these decisions would be based on an assessment and her file notes.  As I’ve said before, the file notes are peppered with inaccuracies reported by the Crisis Team, who frankly seem to make facts up (every few years J requests her to see her notes, and they read like bad Chinese whispers with assumptions and interpretations always prevailing over the actual facts or situation).  Even after complaints are made, the strength of the testimony of these people is still taken over the patient or family evidence.  What chance had J, if the previous consultant thought she had been making up all of the distress regarding in-head voices and hallucinations?  A junior doctor kept pressing that her suicidal thoughts were “ambivalent”.  This is back to that old gem, whereby J is apparently not serious about trying to kill herself and all actions up to now have been “impulsive”.  The utter invalidation is unreal sometimes.  Remember, she can’t walk away from this, these people control whether or not she receives care, and the type of liberties she is allowed. In saying all this, my fight with them up to now was getting them to keep her safe.  She says “I want to kill myself, I’m not sure I can keep myself safe.  I want to walk out of here and into the road” (I paraphrase), whilst sectioning her the other doctor said “You’ve forced our hand”.  This reminds me of the puffing and sighing I’ve seen from the Crisis Team.   

Prior to the meeting about the compulsory treatment and referral out of county, J’s named nurse and an occupational therapist had already made some breakthroughs in working through her depression self-esteem and OCD, and a rape counsellor had finally been assigned to her.  After all these years, none of the doctors seem to think that rapes by two different men would be relevant in terms of J’s history, preferring always to focus on childhood and family - for christsake, half of this shit might even be PTSD.  Maybe they thought she was making them up.  Cos patients do that, right?  For attention?

Anyhow, in summary, her ward care was getting somewhere, perhaps.

-… 

Actually I’m getting too wound up to continue typing.  It never stops.  The bigotry never ends.

Thoughts: - Trigger Ward - MHPs with PCs

8th May 2015

Her ward specialises in new ways to trigger her. And when they can’t find new ways, they go back to old ways. Ward rounds become this game of “what next?” What totally inconsistent manoeuvres can be done today? How can they keep contradicting their own care-plans? Patient-centred care is becoming a euphemism for “We’ve all decided before you joined us”.

I wish I was religious, because then I would know that all the little sins would be added up over a career to equal full damnation, akin to the rapid judgements that only nursing teams and doctors can make prior to a five minute ward round.


14th May 2015

I’m watching a report on BBC News 24. Much as I welcome mental health professionals to work with the police when dealing with mentally unwell people, the police have always been more sympathetic to J than anyone on secondment from the local mental health teams.

Tumblr Questions

wokeuponthewrongside asked:

Hey who do you care for??

I care for J (who is in her thirties).  In a way way we’re almost common-law husband and wife (if we actually lived together) so I use the term “partner”.  She she currently at the Bradgate Mental Health Unit in Leicestershire (UK).  I don’t mind mentioning the location of the place because I feel that not enough has been done to improve that place despite complaints,  warnings and promises, but I need to protect her identity for now.  Since much of my own life is tailored to helping her with her day-to-day mental health problems, we finally decided that I was her informal carer.  For several years we did not mention this to professionals because we felt that they would help her less if they thought someone was looking after/ out for her.   The truth is there is no way of predicting the level of care or help that will be available in a crisis, it’s completely arbitrary and down to the pressures on and the prejudices within the professional make the referral (I say “prejudices” because her diagnosis of Borderline Personality Disorder, means that she is treated as a type of attention seeker time-waster, and not an extremely depressed suicidal person - in fact they rarely believe she is actually suicidal). She’s lucky enough to have a CPN and psychiatrist in the community, but the people in these roles keep changing.  Apparently I am one of the few points of continuity in her life, as a result I am sometimes her advocate/next of kin as well.  :)

---

belis86 asked:

I wanted to thank you for your blog. It's not news to me that our mental health services are failing but to read your account was a real eye opener. It's clearly not just about cuts but also attitudes.

Thanks. :) Sometimes I find it difficult to type things in a logical way with specific quotes and incidents, sometimes the ambivalence of staff to their own malpractice makes you doubt your instincts and what to expect, but instincts is sometimes all we have left.  Our (J’s & my) instincts are that this service can do a lot better than this. I am amazed we hear that mental health treatment on the NHS is not “compassion based”, when in fact good nurses act with compassion and to some extent, passion, i.e. belief in what they do, belief in recovery or at least understand their role in terms of alleviating suffering.  That’s the good nurses.   Some nurses, and consultants repeatedly tell us that not everything they do is diagnosis based, and yet we see all sorts of differences in care and attitudes to different patients - and not in a good way.  The simplest of briefings and awareness training could prevent so many triggers and upset.  Hospitals genuinely believe that suicide prevention is all about collapsible ligature points and observation, and yet day after day they will screw up someone’s whole week by not allowing them out for a walk because of a lack of staff, or visiting relatives or a medical appointment is cancelled because the transport isn’t available, or the main consultant is off sick but no-one will bother to tell the patients that ward round is cancelled - with minimal acknowledgement that these things might be an issue (you read this in inquest reports, somehow “circumstantial” is not their problem).  That’s just the broadest stuff.  When confined to a ward, or under section, patients will feel utterly powerless and yet supposedly patient centred care demands that they take initiative and responsibility over their own path to recovery, and yet the accountability of the hospital and Trust and any recourse is zero.  J went for months without the doctors being organised enough to change her medication, after saying that this was the main reason for her admission, even raising the issue was a big deal for her.  We’ve just come through a very bumpy period where they wanted to send her away for up to two years (compulsory and costly) for care she may have already had.  Gah, I’m going off the point.  It’s the diagnosis prejudice I hate.  Nurses literally transform in front of J once they recognise her to be a friendly, but anxious, interesting person and not some sort of troublemaking temporary-stay whining manipulative meat-unit (which her notes or hand-over must have communicated).  

Thank you so much for your message.  I’m partly writing this blog because there is very little ongoing feedback or validation, or acknowledgement of the problems in these institutions.  The police often say “you need the right help”, and assume that by handing you over for an assessment that you’ll get that help.  No policeman has ever said we’ll be charged with wasting police time, and yet we have been told this on several occasions by Crisis Teams and consultants - I follow instructions to the letter with regards to emergency services.  As J’s carer, apparently my life is supposed to get easier when she is in hospital, it’s quite the opposite.  I think my friends and family have heard all our stories some much now that they may believe the problem is with us.  

Anyway, thanks again. I hope you are well, and are not put off seeking help for yourself or others.