All we want is ...

Mental health service budgets 'cut by 8%' BBC News 20March2015

Mental health service budgets 'cut by 8%' 

http://m.bbc.co.uk/news/health-31970871 BBC 20.3.15

(Case study) "The hardest point was when I went into a deeper level of crisis and my psychiatrist was actually on annual leave which was unfortunate but there was nobody there to cover this workload.  ... So for three weeks I was basically in limbo. It was one of the hardest times of my life and I really didn't want to be here but there was no-one in the psychiatric team who was able to listen."

... Paul Farmer, chief executive of of the mental health charity Mind, said: "The treatment gap for mental health is huge - 75% of people with mental health problems get no help at all. ... Meanwhile, many more are being turned away from services when they need them the most, left to cope alone with self-harm and suicidal thoughts. ... We need to see a permanent increase in the NHS mental health budget of at least £1bn if we are to reverse the damage caused by years of neglect and recent cuts."

Email to a mental health advocate for carers and J in crisis (sent today)

Hi (mental health advocate name)

Thanks for meeting me the other day.  The meeting to query J's diagnosis and revise her care plan did not go well.  Present were myself, J, Dr Tr (junior doctor) and Dr To (locum). With reservation, they said they might raise the diagnosis issue in a meeting at a later stage, but that they wouldn't change Dr D's care plan for J until she returned from leave.  After the meeting J discovered that one of her drugs had been stopped several days earlier than expected, and this compounded feelings of powerlessness for both of us.

Since then she has been trying to leave the ward in order to kill herself and ligatured with a ribbon she had found. The good news (for me, because I feel would be at serious risk if she left the ward) is that the nurses used a holding section 5.4, then a doctor applied a 72 hour Section 5.2 and finally, with great reluctance, a Section 2 was implemented around 1.30pm today (19/3/15).  Apparently the doctor (Dr -Y---) phoned Dr D (who is supposed to be on leave) who, yet again, asserted that when J is  a voluntary patient that She is "taking responsibility for her behavior" and cooperating with her care.  Yet again, inferring that J's depression is nothing more that acting out, attention seeking or being naughty or disruptive for the sake of it (BPD traits, not acknowledging her depression).  Again, they wanted to discourage the use of sectioning, belittling J's risk to herself. Dr Y kept reminding J that she would be killing other people if she died on the road. Yet again, the emphasis is on negative consequences beyond J's control (she'd be dead anyway) and possibly guilt-tripping - much like the Dr D's statements that J would be stealing the seclusion gown she was wearing when she went to the road.

I'm not convinced that anyone senior has learnt anything from the previous incident when J left the ward, but I am grateful that she has been temporarily sectioned (contrary to her care plan which said she would be free to leave and she should sign a discharge form).

J tells me that she believes that when Dr D returns in a couple of weeks that she will be probably lift the section and then J will be free to continue with her plan to kill herself.  J is being very open with the nurses regarding her desire to end her life.  As I type she is on level two obs (dropped from L1 after the ligature attempt), but I think this is a very temporary measure.  Her named nurse, N is away until next Thursday. J hasn't been sleeping over the last few days and is avoiding going into the dining area for meals except for cereal at breakfast, and, apart from the chocolate I have brought her, she tells me that she isn't eating meals.

I believe one of the nurses has said that they shall put J in contact with a specialist in turning around and challenging diagnoses. I'm not sure if the person they are thinking of is a specific (name of organisation) advocate.  N (named nurse) has already made it possible for a rape counseling service to visit J in hospital.

I don't know what I should do with regards to the ongoing duty of care issues and safeguarding issues (mainly the negative attitude of the consultants towards J, possibly in relation to BPD diagnosis prejudice).  J maintains very good relations with the nurses.

I am now considering making my complaint about safeguarding issues and the attitude (and previous actions) of Dr D into a formal complaint.  However, I am still concerned that this will result in J being moved to a different ward and that in turn would result in J having to build relationships with the nurses on the new ward from scratch.  J is "terrified" of the possibility of being moved (her words).  My instinct is also to wait a few days to see if there are any further developments.

Thoughts on any of this or suggestions for meetings will be welcome.  Although I haven't been able to get a schedule for when the ward rounds are on H Ward, a ward round has been booked in for 3.30pm, Monday 23 March - which her CPN will attend.  I'm inviting you to come along with me if you're available and J says she has no problem with you being present.  Apologies for short notice.

Thanks again / regards
(my name)

Requests to change the diagnosis and changing the punitive social contract style care plan

After chats with nurses and the ward matron (partly prompted by my emails and letters) we had asked to talk to the locum consultant and junior doctor about exploring a different diagnosis for Jo.

On a piece of paper Jo had written something similar to this that her diagnosis was not BPD (perhaps it had been many years previously) but that it was currently a combination of the following, in order of priority (paraphrasing)
—

Depression (with psychosis*)
GAD (Anxiety)
OCD (Obsessive Compulsive Disorder)
Bulimia Nervosa
—

* The psychotic aspect is our, and a nurse’s, interpretation of her hallucinations of swarming spiders and voices telling her to kill herself. These have got progressively worse in recent months. They are especially bad at this week.

Incidentally the positive parts of her care plan, negotiated with the ward staff, target depression, self esteem, OCD and the eating disorder (amongst other things).

I submitted the following thoughts:
—

Diagnosis

The diagnosis of BPD has led to mistakes by professionals who do not know J, especially where snap decisions are made and there are failings in safeguarding (this has happened with the community teams and in hospital, and has prompted me as carer to make formal complaints). When J is suicidal she is not making a threat, she is informing staff of risk to herself, which takes courage for her to admit to.
I would like to see a different diagnosis as I believe it has brought out the worst in her NHS care, and as far as I understand, does not match with the J I have known for over seven years. J is responsible and often worries about what others think and the consequences of all actions. Her depression is crippling and pervades everything, at these times the OCD gets worse. She has both positive and negative coping strategies, but they are, at least strategies, not random attention seeking behavior. She is very private about her self harm and bulimia. J has very low self esteem.


The Care Plan

I would like the doctors responsible for discharge from the ward to listen to the nurses when J is in crisis.
I would like the doctors to respect any amended care plan and circumstantial knowledge provided by myself and staff (a revised care plan was ignored).
I would like punitive aspects of the care plan to be removed.
I would like her history of ward stays not to be used against her, or blame appointed for being readmitted to hospital (she is often admitted on the advice of others and sometimes against her will). We receive many conflicting messages about the availability of care, and she already feels guilty and undeserving when receiving treatment.
J has a right to care in hospital and the community. Her being unwell or wanting the leave the ward should be not interpreted as a refusal of treatment (the care plan currently states this). She has already been seen to co-operate on many levels with regards to her day-to-day care, medication and behavior. I have seen other patients on the wards she has stayed on and I have worked in the voluntary sector with service users with diverse mental health needs, from this I know that J is not a “difficult” or threatening patient to work with. J is often well liked by staff who have invested time in her, even if it’s just on a casual conversational level.
If any aspect of a social contract is to remain in the care plan, there needs to be more of a guarantee that Trust will keep her safe and supported, especially during medication change.
It is important that J is offered genuine choices, with support, and not “all or nothing” ultimatums.

J should not be getting to a stage where she wants to self harm or run off the ward into the main road. She will often try to communicate her level of danger to herself with staff, but this can be difficult, because these feelings are always there in the background. In my own opinion, she is not impulsive, but her plans for self destruction are a negative coping safety net which stay just below the surface. Compassionate and sympathetic approaches have worked well in the past.

It’s important for all staff to remember what a strange environment hospital is. In the same way that J does not socialize with strangers when she is at home, sociability, although sometimes a marker for confidence might not be the best measure of her wellness. Adapting to ward life can be positive but may can also be argued that it leads to institutional conditioning. J’s privacy is very important to her, but she has always accepted the need for observation by nurses - but this has to be a consistent and respectful arrangement (even if it’s just a clear establishment of ward protocol with new staff, knocking, use of view window, temporary lighting etc.) dependent on risk and minimum distress or loss of dignity for the patient.

(My name)
partner and carer for J-.
14th March 2015. 
—

The bad news is that the doctors barely knew what we wanted to chat about and both were unwilling to action any real change to diagnosis or care plan until the original consultant returned. I was not impressed by the way they questioned J, and found myself getting very frustrated. There is irony in the fact that the professionals who want J to take so much “responsibility” were so unwilling to get involved with the care of one of their own patients (even if this was only a temporary arrangement). This locum, although seemingly well meaning, is barely a pilot light, until Dr D returns (we don’t know when this will be and she is steadfast in her views about J). There is a slim chance the diagnosis might be reevaluated at a later date, but they certainly didn’t want to change another doctor’s care plan. Apparently someone with BPD can “present” all of the above, and that they themselves didn’t like “labels”. They misunderstood or chose to ignore that the flaws in the care plan re. J’s risk, were implicitly tied in with the BPD diagnosis, hence us combining the two topics in the same meeting.
The meeting was also disappointing because after all of the supportive comments from the nurses, no-one was available to fight our corner in the actual room and the doctors hadn’t read the notes we had submitted to them. 

I can only hope that this is at least a starting point for change, even if none appeared to be forthcoming. We had genuinely been buoyed up by the success of calling this meeting, but the powerlessness we felt afterwards was almost tangible. In fact it set J back, if only because she is so tired of fighting for basic care whilst at the same time being so unwell.

Borderline Personality Disorder: should we challenge the diagnosis or just accept the institutional prejudice?

After several years of debating with J about the futility of challenging a diagnosis, I'm suddenly acutely aware of a need for change. There's some very negative and consistent aspects to her treatment and attitude from professionals which make me more or more certain that she is has been not only a victim of prejudice against patients with Borderline Personality Disorder, but also there's a theme to the ongoing failure to adequately risk assess and safeguard J when she is suicidal. Basically they think she is "acting out", bluffing or faking. It's as though, to the MH professionals, her suicidal feelings are in fact "ambivalent" (recent quote from junior doctor) and that she will not follow her thoughts through.  In her current care plan we had asked the nurses to help J with aspects of her illness which we have identified, for example: depression, low mood, help with low self esteem, an allowance for discussions about OCD, and keeping an eating disorder in check. A positive recent development has been the nurses on her ward putting her in contact with a place that helps rape victims (before I was with her she suffered two awful separate rapes and despite all the contact with consultants over the years, to my knowledge, has never been offered therapy for this).  The doctors are often not interested in J's adult life experiences (which may have even manifested as PTSD) and often only refer to her childhood. Again, this is part of how doctors approach BPD, by talking about the emotionally stunting which can occur in childhood which can result in a perpetual adolescence where the patient refuses to act like an adult. I.e. they want the patient to grow up and take control or responsibility.  Naturally this is supposed to be up to the patient to magic out of nowhere, whilst they are treated with indifference by staff, for fear that any acknowledgement will condone and validate the patient's current views and behaviours.  So when the patient says, "I hurt, I want to die. I will kill myself."  they will be treated as though they are making a threat, that they are emotionally blackmailling family, friends and professionals, and so the response is non-negotiable "tough love".  The professional will set "boundaries" to the care, compensating for the patient's lack of rules (or support) in childhood.  Reading around the subject of risk management on mental health wards it becomes very apparent that nurses and doctors routinely underestimate the risk that PD sufferers pose to themselves.  This is contrary to what I would have expected, since studies between the relationship between self-harm and suicide always places the the self-harmers in a higher risk.  Again prejudice about self harm is closely tied in with prejudice about BPD, i.e. that self harm is part of attention-seeking behaviour.  Many patients self harm for different reasons, and in my experience the professional response has always less to do with training and more to do with the experiences, personality and compassion of the staff treating the patient.   I have recently read that self-harmers may no longer have the "body barrier" - innate self-preservation is lessened, and the method is no longer feared (cutting, ligaturing, dangerous environments).  I'm guessing that if you self harm, it's just seen as an attention seeking sympton of BPD, and perhaps not even recognised as a coping strategy or even a way of preserving one's own life (ironically, bearing in mind what I've just typed).  Locally (in NHS community and hospital teams, not without referral to outside agencies) I've never heard of self injury being treated directly/therapeutically.  Maybe it's like random shouting, it's just seen as one of those things which will subside when the patient's main diagnosis is being treated, not even seen as a complication, just a compulsive action.  Illegal drug use and drinking get more recognition than cutting or burning, certainly they are more normalised.

Even if J has BPD, her suicidal thoughts and plans will never be taken seriously, her self harm and eating disorder will always be viewed as part of a package of anti-social belligerence, going back in time to bad birthday, perhaps.  This is probably the reason why when we, carer and sufferer, contact professionals, when she is distressed, it's only after going to A&E and surviving an overdose or being physically marched into hospital by police will J be admitted to hospital.  Up to that point it's all the cliches about cups of tea, taking meds, distracting self, and wait to talk to the CPN (if you are lucky to have a CPN, they will almost certainly say all the same things and not recommend an assessment or ward stay, in fact, sometimes they will claim it's not it there power to initiate these things).  
In J's case, policemen, nurses and paramedics seem to warm to J and even sympathise.  They repeatedly assure her that that's "why they are there" and that she is "not wasting anyone's time".  She is not aggressive, she might be panicked and desperate to kill herself, but she doesn't threaten the professionals or defiantly hold up bloodied arms in whatever form the stereotype people have of these things is.  In my head I imagine a thousand doctors shrug at this moment, as if to say "what do these front-liners really know of mental illness? We give the outpatient an inch and they'll want a mile, or in this case, a precious bed on a mental health ward, meant for more deserving mentally unwell (whoever they may be).

Naturally, I'm typing about the worst attitudes to a stereotype template, but the truth is, without clear speaking from professionals, and frankly, a lot of inferences regarding "taking responsibility", "impulsiveness", "suicidal ideation" (but not "real" thoughts that are acted upon), it's hard not to assume that they think they are looking at broken selfish monsters who are best kept away from their understaffed precious resources.  By turning J away they have freed up another bed, and saved on a lot of paper work and maybe some phone calls.

Over a period of many months several professionals told J that even if she was unwell it would be very unlikely that she would be admitted to hospital.  We committed ourselves to the notion that we would be rarely on holiday, and that as the services were not catering for the likes of J, she would always be at home. We adopted a rescue cat.  We did not make the decision lightly and were determined to rectify whatever harm had come to that cat before she was brought to the sanctuary. The company and love was to be mutual. J never planned to be in hospital, at least not for long ward stays.

Again, I repeat, J never planned to be in hospital, J likes home comforts, but even she acknowledges when she needs to be kept safe until she is well.  And yet the history of her ward stays is used against her, repeatedly, and she has been accused of being "dependant upon services".  I need her to be in hospital when she is actively suicidal.  It's the only place when she can be kept safe.  If I locked her house the door when she wanted to go to a motorway bridge I could be accused of kidnap and imprisonment.  When we talk to doctors on the wards, they may ask about "triggers", but they rarely ask about the method and nature of admission - usually the very demonstration of severity of symptoms (J begging the police to take her to the motorway bridge and struggling so much that they had to put her in a the prisoner cage in a van). Recanting such details seems to feel the room with an air of embarrassment, as if they just don't have time for this.  They are surprised when they discover that J doesn't want to be in hospital and that I'm the one who has called the police (an arched eyebrow from the questioner is all I need to know that they think I've been emotionally manipulated by her apparently conniving ways).

The police have never said she was "wasting police time", and yet doctors and the crisis teams seem to feel that by saying this phrase its an acceptable way of discouraging us from asking for help. Take us to court later, I say.  I am sick of the string of anonymous consultants and social workers, and am even sicker of those that think they know J and can just say a few platitudes to fix the situation.

Okay I need a break.  I've already lost a lot of time today (will explain shortly).
This was intended to be a sort of prologue to recent events and typed sheets of request submitted to the doctors.
More to follow.

Acknowledgement is better than silence

I take it back.  This evening I had a response from Customer Services / the Patient Advice and Liaison Service at the Trust.  Even an acknowledgement is better than complete silence.  Strange that formal contact from staff has not been made with myself, or perhaps it's all outstanding whilst the consultant is away.  Hmm. 

---

Dear Mr ____

 

Thank you for your letter dated 9 March 2015.

 

Please accept my apologies that you did not receive a written acknowledgement from the PALS Team to your email dated 14.2.15.

 

I would like to assure you that the PALS Team forwarded your email on 14.2.15 to the Service Manager responsible for H-- Ward who I understood had asked [the ward matron] to phone you to respond to the concerns you raised in your email.

 

I will forward your most recent correspondence to the Service Manager and ask her to contact you to discuss the most appropriate way to respond to your concerns.

 

If you require any further information please do not hesitate to contact me or a member of the PALS Team.

 

Kind regards ...

 

Untitled (foyer)

CQC inspect the Trust plus misc

It’s CQC inspection week at the Leics Partnership NHS Trust who run the mental health unit where J is staying. I’m not holding my breath. The CQC are usually more concerned with ward hygiene than life threatening incompetence or suicide triggers. 
http://www.leicspart.nhs.uk/_InvolvingYou-CQCvisitMarch2015.aspx
Unrelated: Customer Services / PALs at the LPT have still not responded to my email last month. I have now emailed, rung and sent a letter. No acknowledgement. Perhaps they only deal with formal complaints. If that’s true, it’s a really sorry state of affairs.
Oddly the J’s consultant has been on leave for two weeks. This of course means locum doctors are now in charge, and there’s always teething troubles. Oh, and yes, the drugs dispensing computer failed many patients again - perhaps someone hadn’t renewed the prescriptions. Naturally the duty doctors weren’t much help over the weekend. This has happened so many times over the years I have lost count.

Tumblr query: Would specific training help me with J?

Query from anonymous Tumblr user:

"You ever considered getting some training in dealing with someone with a personality disorder?"

A curious question. I’m not sure I would like much more insight into these one-size-fits-all diagnoses. All training is of interest, but to what end? I think my own short lived career in mental health is over for the foreseeable future (partly because I see most agency support as very lacking) We’re still divided that J should be classed as BPD. I see depression, anxiety, low self esteem and OCD (plus eating disorders, possibly PTSD from several very specific traumatic events) I attended a training day for my work in the mental health drop-ins which taught me practically the opposite to what I see the NHS practitioners doing. So far, the main thing I understand about personality disorders is that it brings out the worse in many professionals, who seem to think it’s acceptable to invalidate the patient’s suffering to the point of dehumanizing them. A tutor would probably tell me that at the end of the day I’m being manipulated by J, and that I’m allowing sentiment to hold her recovery back. J doesn’t always care what I think (as opposed to someone looking for a reaction). Some days she just wants to be dead. I’m a strong believer in humane empathy based solutions, positive coping and so on, reliable structure, empowerment, sympathy, maybe a little resilience but imbued with compassion. Ironically, I think I’d be too prejudiced in a training environment. Also, as her carer, her consultants never give a damn about any of my informed opinions, so maybe I’m better running on instinct - especially when J is suicidal and needs to be kept safe. No amount of formal training can help me pull the pills out of her mouth or help in tackling her to the ground when she is near busy road. I’m not sure PD training would help in steering away from these events. Maybe it would help me understand and cope with these situations, but I have a feeling we would end up alienating each other. Does that make any sense? Although as I type this I realize that there’s another aspect to this, autonomy. It would be interesting to try and construct a plan which means we don’t have to have contact with services, but whilst we pursue pharmacological (edit: pharmaceutical? i.e. medication) solutions it’s going to be pretty hard to break away from consultants completely. J needs the right treatment and perhaps I need training in something other than mental health, which has hijacked my life in so many ways up to now.  Thanks for messaging,

Visiting Hours

http://instagram.com/p/zfYcw7s60o/

Man classed high suicide risk kills himself after being discharged twice by hospital (Leicester Mercury 25 Feb 2015)

Man classed high suicide risk kills himself after being discharged twice by hospital
Leicester Mercury 25 February 2015

http://www.leicestermercury.co.uk/Man-classed-high-suicide-risk-kills-discharged/story-26081381-detail/story.html

I'm mainly posting this because despite the best efforts of hospital staff, my local NHS Trust which deals with mental health matters, the Leicestershire LPT, seem to have dropped the ball in failing to help this man.