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
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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 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.
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.
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