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. 

BBC News : Mental health patients travelling up to 79 miles for bed ‘not acceptable’ (May 2, 2015)

BBC News : Mental health patients travelling up to 79 miles for bed ‘not acceptable’ (May 2, 2015) http://www.bbc.co.uk/news/uk-england-31448670

This is an important article.  Another snapshot of the state of mental health ward care, curiously having similar problems to the prison service.  However, our local provider in Leicestershire is cited in the following table.  I knew there was a problem, but thought this had to be a typo.  Apparently Trusts save money by shutting wards and cutting beds, laying off therapists, I think not, because they have to be pay a lot more when they send them to private or public unit someone else in the country.  No wonder the Crisis Teams are such bastards.  "No beds" they sigh, like the outpatient is a big problem for them, "We'll have to ring around". Gatekeepers to shitty sardine cans.

J's Care at the Bradgate Unit

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.

Thoughts on reluctantly defining self as a "carer"

What do you mean when you say "carer"? Are you a family member or partner? Just trying to understand...
 Query from lovemyesotericmind (Tumblr)

 It took me a while to accept that I was a “carer”. It’s somewhat easier to state whilst my partner is a regular inpatient for mental health treatment. Foremost I am her partner, sometimes I am classed as “next of kin” - which can be a big deal when a person is Sectioned (forcibly kept in hospital) under the Mental Health Act, you become the officially notified person and you have a right to challenge the Section. In situations where her outpatient care is lacking, I have a real voice as her carer (and sometimes “advocate”), since it affects my life too. After that I am her partner (not quite common-law husband and wife because we live in separate small dwellings) After a few years of this (I have been J’s partner for seven years) and realising that I needed my employers to understand that occasionally that I must be available when J is in crisis, as well as compensating on a daily basis for J’s peculiarities resulting from her condition, I knew that I was her carer. In fact my current availability to employers is very restricted, because of my need to be available to her (also I can’t concentrate in any job whilst she is actively trying to kill herself). I’m trying to be self employed, but may have to make some difficult decisions soon (I despise contact with the brutal welfare system) In the UK there are some problems with the formality of the title, depending upon whether or not you can claim benefits depending upon the role. Politicians and charities are now acknowledging the “hidden army” of carers as a genuine saving on the NHS and Social Services, which can be vindicating in a way that it wasn’t in the past. Even when she isn’t in crisis, I prompt her to take medication and helping her to not worry about appointments, I do errands for her when she is agoraphobic, this includes picking up prescriptions and keeping her company during interviews, assessments etc. (Edit: I help with meals which can be an issue regarding her ED) I find the issue a confusing one, when you love a person, these are the things we do, it seems so normal. At some point, friends and colleagues starting talking about my needs, which didn’t make any sense to me, since I always felt that J’s problems were being barely addressed so it seemed bizarre that I could even identify myself as someone in a role defined by her illness. This is all very strange, because as a mental health worker in the voluntary sector (a job I’ve now left, partly because there was “mental health” in too many corners of my life and partly in protest at changes to local services), I was always signposting people to get support to alleviate whatever load life was throwing at them, and some of them were carers-in-denial too. Oops, sorry if I’ve babbled a bit. Talking about the role of carer is still something I’m negotiating with and am currently having teeny bit of a crisis with my job situation as well. ;) The good news is that I’m starting to get advice. Thanks for asking the question, it sometimes helps for me to see my thoughts and feelings written out like this. :)

A Better Day (J's care update)

By way of balance, yesterday was a better day.  During my visit in the afternoon, J asked that her named nurse explain a traffic light warning method that had been suggested on the previous day.  J is currently on Level 1 Obs (this is when a nurse has to be in line of sight at all times) - for J this is mainly to discourage her from the improvised ligaturing.  The traffic light idea was basically a very simple way for J communicate her level of risk in an effective way without having to explain too much.  What I liked about this is that we might be also able to identify the "light-amber" and even "green" moments, because when J is very depressed she can never recall when life was better, even if it was just the day before.

Slowly the our trust with staff is being rebuilt.  As you know, if you've read the previous posts, when things don't go right I develop a hate-hate attitude towards consultants and specifically the whole of the Bradgate Unit who always have a lot of redeeming to do in my eyes.
J gets to see a new consultant tomorrow, hopefully a fresh start will do everyone good.   J told me that the ward occupational therapist has agreed to work with her one-to-one since J sometimes struggles with joining group activities.

Again, I'm having to suppress the cynicism and over-protectiveness.  We're still in limbo regarding J's possible extradition to the unit in Birmingham.

Yesterday morning I had some support for myself from a social worker from the local county council. On a practical and bureaucratic level there's not many options open to me as a carer whilst J is in hospital, but he did a fair amount of signposting to other organisations so that I get advice, and is prompting me to chat to a doctor about my own stress levels. I'm particularly freaked out at the moment that I may have dug myself into rut, financially and psychologically.  Naturally this spills out when I'm trying to support J on the phone or in person, and frankly she really has enough on her plate to deal with.

Anyhow. It was a better day.  I need to make sure I record the better days.  Thanks for reading.