Abandon all hope, young man – how it could have gone

My last blog, ‘Abandon all hope, young man’, was written very quickly following the appointment to which it referred.  I had another appointment to get to so it was my initial reaction to the meeting with the psychiatrist and was, as one can tell, very negative.  I sent a copy of the blog to the tutor I worked with last Friday and she asked me for my take on what would have been more useful to me as a service user in the meeting.  I like taking on commissions even if I’m not paid so here goes…

Before I launch into the main thrust of the blog, I suppose I had better give a little background on why I was at an appointment with the psychiatrist in the first place.  It was not a routine follow-up appointment; it was, in fact, the result of me having to chase the Grays Hall Outpatients Department for a long overdue appointment.  I had no idea how overdue until I spoke to the consultant’s secretary only to be told that it had been 13 months since the last appointment at which I was shuffled off with a promise of a follow-up in 3 months.  What makes this even worse is that the appointment back on 2 September 2011 was also the result of me having to chase the appointment up.  However, during my long telephone exchange with the consultant’s secretary, it appeared that, instead of being given an appointment with a member of my consultant’s team, the appointment in 2011 was with a doctor on the Community Mental Health Team.  He was a good doctor who promised to look into getting me a Care Co-ordinator and some one-to-one therapy as I was not getting on well with the group therapy I was on at the time.  I went away happy that day.  I should not have been.

The reason I had not been given an appointment for 13 months was because the doctor I saw had referred my case to a Care Co-ordinator in the CDAS team that deals with service users with drug and/or alcohol issues.  The CDAS team would not accept me as a client because I have not got a drug or alcohol problem (apart from the prescription drugs I take do not work and I cannot have alcohol with the prescription drugs that do not work).  Strangely enough though, I had been given a Care Co-ordinator from that team although the poor lady had no idea I was on her caseload and her team did not recognise me as a client.  My consultant’s secretary had to sheepishly tell me that they were waiting for my Care Co-ordinator to arrange a new appointment for me and that is where the problem occurred.

Of course, all of this could have been avoided if I had been copied into the correspondence between the consultant and my GP, something I had requested and signed a form for.  I had received nothing.  Why?  Because they had opened up a second file, as my notes were getting rather extensive, and failed to copy the form requesting copies of correspondence to be sent to me.

Two clerical errors had stopped me from getting the follow-up appointments for over a year so the secretary arranged for me to have an emergency appointment so I could discuss my diagnosis and my medication.  Now you are all caught up, here is the way the appointment should have gone…

First of all, the consultant did not apologise for the mistakes that had happened which would have been nice.  He also kept looking at his watch from the moment I walked in until the moment I left.  This does not help a service user who has basically been ignored by the service for over a year.

I asked the consultant about my diagnosis and why it kept changing.  I know that diagnoses do change over time but, without the explanation for why it changes, it is very disconcerting for the service user especially if they are in crisis.  My diagnosis was originally Adjustment Disorder (depressive type) and Recurrent Depressive Disorder with a differential diagnosis of Dysthymia.  The diagnosis of Adjustment Disorder disappeared after a couple of appointments and it would have been nice to have been told that the reason is that it refers to a period of reactive depression so it would not have remained part of the on-going diagnosis.  Full disclosure of the facts and reasons behind a diagnosis can really help a service user.

We moved on to the fact that my medications do nothing to alleviate my depression and the tone of the appointment took a dark turn from my perspective.  The consultant told me he was unwilling to risk using any more medications on me because he had given me, over the period I had been under his ‘care’, one drug from each of the three or four groups of drugs used to treat depression.  I have two things to say on that score – 1) the consultant was not risking anything, I am the one dosing myself up with poisons and 2) there is more than one drug per group of anti-depressants so why was he reluctant to try me on another drug or combination?

I do not like having to take medications as they are merely like using chemical sledgehammers to sort out a delicate problem, however, different drugs, even in the same group, may have different effects on a service user and one of those drugs could have helped me.  The consultant’s approach seemed to me as like being confronted by a locked door and being given a huge bunch of keys, one of which will open the door, trying two or three keys and giving up.  The result of the conversation was the consultant told me that I may just be one of those people who cannot be helped.

I was told that my ‘depression’ did not tick enough of the boxes to be considered Recurrent Depressive Disorder and he refused to listen to the other psychological problems I suffer from instead focussing on the mundane symptoms of sleep pattern and appetite.  His reasoning was that, as my current worries are due to stressors that everyone is subject to, my problem was not as deep rooted as is required by clinical depression.  The fact that mundane stressors are uppermost in my mind could be as a result of the times we live in and are not just the usual worries of life did not occur to him.  The fact that I live with the constant wish to be dead, to take my own life as I cannot bear to live any longer did not enter the conversation because he was rushing me, not taking time to get the fullest picture.  I was left with a feeling of being ignored…again.  I felt as though, because I did not fit neatly into one of the nice little boxes psychiatrists use, I was about to be cut loose from the services I rely on.  And, all the time, he was looking at his watch, obviously wishing that I was not there and wanting to hasten my departure.  If I had been given the time I needed, perhaps I may have had a different outcome.

I now have to wait for a month until the consultant has had a chance to talk things over with the therapist I had group therapy with as to whether a talking therapy would help me.  The problem I have with that is that I found it hard to engage with the group I was in because, when I did engage, the therapist did not support me as well as she could have so I closed down.  She did not back me up on the fact that humans can hold contradictory thoughts in their heads, a process called cognitive dissonance, something I am constantly at war with.  As a result, I was accused of being contrary and playing games by other members of the group.  I also showed the therapist up a couple of times by having what I contributed confirmed by other members of the group when she pooh-poohed what I had said.

My fate is now in the hands of a consultant who just wants to be rid of me and a therapist who blames me for her failings as a therapist.  What chance do I have?

I know that there is a pressure on consultants to get through a huge workload but if that means that service users are being rushed through, their stories ignored, does that really mean they are getting the service they need or deserve.  Service users are individuals with needs and feelings; they are not an annoyance or a diagnosis.  They need to be listened to, understood and empathised with so that they will get the best help available.

So, how should the appointment have gone to improve the service?  Here is my list of suggestions.

1.    Read the notes before the service user comes into an appointment.

2.    If you or your team has made a mistake, apologise.

3.    Do not keep looking at your watch during the appointment – it makes the service user flustered, makes them lose their flow and means vital information is missed.

4.    Just because a mundane stressor is uppermost in a person’s thoughts, do not make assumptions that they are the only things going on in their mind.

5.    Explain any changes to a diagnosis or the service you provide.  Even the most intelligent service user needs to have all the information spelt out to them on occasion.

6.    Listen to the service user and do not ignore bits of what they say because it does not fit into your neat little boxes.  Do not forget that new conditions can arise from not fitting into the old boxes.

7.    Exhaust all possibilities of medication before writing a person off as someone who cannot be helped.  Sometimes even the same drug but sourced from a different supplier can have slightly different effects.

8.    Do not write off a person as incurable.

Until next time…

Abandon all hope, young man

I’ve just left an appointment with my consultant psychiatrist and, although it clarified some matters, it has left me feeling more hopeless than ever.  I told the doctor about some of my personality problems, the fact that the medication seems to have no effect on me (other than to lumber me with symptoms due to side effects) and the fact that I seem to have a moveable feast when it comes to the diagnosis I am given.

I’m unsure whether he really heard the personality problems I told him about because he seemed more interested in the more mundane issues – sleep pattern, appetite, etc. – and, in my opinion, the personality problems are where my depression and anxiety are born and raised.  However, he’s the expert.

The question of diagnosis was covered by the psychiatrist saying that a diagnosis is based on what I bring up in the appointments and most diagnoses are subject to change.  This is a given and something I already knew but it would have been nice to be told that ‘Adjustment Disorder (depressive type)’ is another way of saying ‘a period of depression brought on by an event’ or ‘reactive depression’.  The other diagnosis of ‘Recurrent Depressive Disorder’ is now being questioned for some reason although being somewhat drowsy from my medication, one dose of which I kept around to demonstrate the sedative effect on me, I didn’t really get what the problem was.  The doctor did say though that the fact I was on two anti-depressants was unusual for someone in my case and showed that they were willing to take medical risks to help me although I’d think that I’m the one taking all the risks.

The doctor was unwilling to change my medication because I’ve had medications from each class of medication and they haven’t helped.  He didn’t say it in these words as such but the gist of the conversation was that ‘sometimes we just can’t help everyone’ and that it may be a fact that I may just have to live like this for the rest of my life.  That revelation could well be too much for me to bear; however, I will continue to go on until I have the psychiatrist’s final decision, supposedly in a month’s time.

I will be worrying every minute of every hour of every day until I get that final decision, worrying about how that decision will affect my access to services and benefits that I rely on.  All I know is, those words ‘sometimes we just can’t help everyone’ will be echoing around in my head, haunting me.

My latest contribution to society

Not that everyone would agree but I have contributed to society a bit over the last few days.  I attended a Standards Committee meeting for the local adult college on Wednesday evening to help towards the driving up of the quality of provision that Thurrock Adult Community College provides.  I actually said quite a bit at the meeting so I suppose I am finally getting a little more outspoken than I have been in the past.  Of course, that could be due to my blog writing for Your Thurrock and my decision to go on the war path since January this year.

On Thursday, I attended a meeting of the SUCI Advisory Group at Anglia Ruskin University in Chelmsford.  The group advises on service user and carer involvement in the education of social care students and the main thrust of the meeting was to come up with a response to a consultation on behalf of the university.  OK, it wasn’t really much of a contribution to society because the meeting kind of drifted away from the point a couple of times, the consultation response could not be satisfactorily completed as some of the questions related to a document we did not have a copy of and the agenda had to be shortened because of all the side-tracking but it was still worthwhile going.

Yesterday, I was back at Anglia Ruskin on a brilliant placement talking to social care students about what it is like suffering from depression and what helps and/or hinders my progress.  It was really nice to be listened to and respected by both the students and the tutor.  I hope they all got something out of the ‘lecture’ and I hope that they take to heart the stuff I told them about not letting the system rob them of the connection to their humanity when they deal with people with mental health issues.  I suppose that I must have done something right as the tutor told me that some of the students came up to her during the comfort break and told her how much they liked hearing things from a service user’s perspective.  The tutor also asked if I’d be up for a return visit to discuss feedback on the one man show I put on.  Damn straight I would!  And I got something out of the experience too – a comment that the tutor made about family roles in relation to my case really hit home and could actually be the missing piece in the mystery of why I became depressed in the first place.  It is so strange that I have been in two therapeutic groups and yet it is a simple comment that may finally have helped me find the answers I have been looking for.

Well, I have got a nice lazy weekend to look forward to before it is back to Chelmsford for the first public meeting of the new mental health service user and carer involvement and peer support organisation that I wrote the proposal for over the course of a year.  I am not sure how many people are coming but the meeting is simply the core group unveiling the plans to the public in the hopes of getting some support from the mental health community.  At least one mental health commissioner will be coming to the meeting and I have been told that the local service provider wants the new organisation to feed directly into their own service user involvement work so, although we are nowhere near ready just yet, things are looking up.  All we need now is a determined bunch of volunteers to help us set up and some funding either in cash or in kind.

And I am finally going to confront my psychiatrist on Wednesday on a number of issues that have never really made much sense to me regarding my diagnosis such as the fact that the diagnosis keeps changing from appointment to appointment among other things.  Oh well…

Until next time…

The relative value of voluntary work

During a rather pointless debate with a guy on Twitter, he made the most scurrilous claim – that voluntary work is only of value if it is performed by someone who is in paid employment.  What a disgusting thing to say!

If you ask the Employment and Vocational Services department of my local mental health provider, SEPT, you would get a rather different view.  Indeed, one of their aims is to try and get people into paid employment, voluntary work or an education course.

Some would say that voluntary work performed by someone on benefits is of more value because the only resource they have in abundance is time.  A person in paid employment has the luxury of not having to struggle to find money for their next meal or new clothes or travel expenses or rent so their time, limited though it may be, is free of worries.  A person on benefits struggling with the issue of day-to-day survival who gives up some of their time in the pursuit of helping others makes that pursuit much more valuable, both for them, the people they help and society as a whole.

It is a fact that the UK is dependent on volunteers – from litter picking to vital services such as carers – and, if the view that only people in paid employment provide valuable voluntary service becomes more wide-spread, those on benefits who perform vital functions on a voluntary basis will stop doing so, causing the UK to grind to a halt.  I was once a carer for my Grandma.  I was not paid to be her carer and there was no real reason for me to undertake such a role as my mother was her carer and there were employed carers from the local authority.  There was an emotional reason for undertaking the role of carer and an in-built moral reason but I could have refused if I had wished; however, I did not shirk my responsibility.  I am quite sure that my mother and my Grandma valued my voluntary efforts and I am quite sure that, if I had not made the effort, the financial cost of providing care for my Grandma would have been extremely high so I am sure society would value those efforts too.

A voluntary worker on benefits gets paid a damn sight less money than a paid worker would cost society to undertake the same duties so it is only safe to assume that their work is of value to society.  If nothing else, someone, regardless of their employment status, undertaking voluntary work is fulfilling their role in Cameron’s vision of The Big Society, a vision that asks people to run services for nothing on a voluntary basis because the Government has not got the money to pay people to do the work.  The Big Society is a financially bankrupt society run by a morally bankrupt administration that get paid more in a year, individually, than most people on benefits will get in a decade.  The least a voluntary worker on benefits deserves is the respect of the society they serve.

Until next time…