Liar, liar, pants on fire (or: A response from the CMHT).

Apologies. A thousand apologies.
There were so many supportive and helpful comments on my last post that I meant to come back and respond to and instead, some other things happened and I hid my head in the sand. Not in an entirely bad way, just in a way that meant I was only dealing with what was essential.

Change is afoot. That’s what’s shaken me recently. And it’s change that I’ve instigated, but it just felt a lot less scary when I was planning it, rather than actually moving forward with it. I’ll elaborate in another post, because the main reason for this post is … the response from the CMHT regarding my complaint.

Sigh.

I wasn’t entirely naive when I made the complaint. I figured that any response was going to centre on their apologising for my misunderstanding things. Pointless, frustrating, yes, but I felt like I still needed to make the complaint. I wasn’t anticipating being called a liar. I wasn’t prepared for exactly how condescending it was and how many of their facts that I disagree with.

The letter arrived on Friday, and I managed to skim read it before getting so angry that it went back into its envelope until today.

There is a page of gubbins about how sorry the Trust was that I felt the need to complain and about how the complaint was dealt with. Then, on to the response about that dreaded appointment with the New Consultant and Care Co-ordinator…. (facetious comments all my own):

The Trust is “disappointed to read that you were unhappy with the way Dr F conducted his assessment. Dr F explained carefully that he would be performing a mental state examination and what would be involved. Dr F is sorry if this made you feel uncomfortable. Dr F noted that you appeared to have a squint in your right eye and remarked on this because it was not mentioned in your previous records, (would it be noted on there? So far this squint remains undetectable to everyone apart from Dr F, so it’d hardly a distinguishing feature). A squint may be contributing factor to visual hallucinations you made reference to and Dr F wanted to ensure this was examined for you, as is good practice, (I maintain that whilst a squint could cause visual disturbances, I fail to see how it can cause a person to hallucinate woodland creatures and people with scary demon-voiced faces. Plus, I still think that it would have been sensible to wait until any physical cause had been ruled out before discharging me. My eyes are fine, my blood tests are clear …. seeing stuff scares me and now although I can deal with it most of the time, I know it’s not how things are supposed to be). During the assessment, Dr F referred to your earlier diagnosis and explained that diagnoses can change and are not set in stone. It would appear that you misunderstood Dr F in this respect, as he confirms that he did not say that diagnoses are not important, (as far as I recall, he did, but, hey ho…)

In the appointment, Dr F also asked a series of questions as part of a standard assessment. These questions are designed to review current mental health needs, as an assessment is not a counselling session, (I know this. I wasn’t expecting a counselling session. I didn’t want a counselling session). Dr F has confirmed from his notes that he did not say that your “experiences were not far removed from what is normal” and can only apologise if you have misunderstood what was said in this respect, (ah yes, the most lukewarm of backhanded apologies. I’m pretty sure I didn’t misunderstand because I asked him to clarify this at the time. That was when he said there was nothing in my history to suggest I had a mental illness. But nevermind, silly me, must have misheard that bit) . You have also made reference to Dr F’s suggestion that the fact you have a full-time job is an indication you are doing well. Dr F has clarified that he said to you that having a job is therapeutic (I agree) and did not say “you’re still doing your job, so it can’t be that bad” (he did). Dr F notes that in your complaint you referred to a person-centred approach, however, he was very clear with you that this was an assessment and not a counselling session, (I did refer to a holistic approach that took into account what being “well” or “ill” meant for each particular patient, rather than applying a blanket approach to all patients. However, it seems that he’s fixed upon this to argue that I was expecting a counselling appointment and therefore the error is mine). Again, Dr F is sorry for any misunderstanding (gee, thanks). Dr F concluded the assessment with his view that your GP was best placed to sustain your care, (I agreed that the CMHT was providing me with nothing positive, however, I also explained to him that my GP practice had been clear that they had concerns with managing my care and had stipulated that they would prefer me to be monitored by the CMHT. Although not keen to remain under the CMHT, I felt it would have been sensible to liaise with my GP before discharging me. Nevermind).

Dr F has also clarified that your diagnosis has not been removed from your medical records held by the Trust. It is standard practice to ensure that all service users seen by the Trust have a documented mental health diagnosis and I can assure you that we have not altered your records in light of your discharge from the CMHT, (this confuses me. He stated that he did not think I had bipolar, or indeed, any mental illness. If this were true, then my diagnosis, as recorded on the record, would be wrong, surely? It seems contradictory to me. The question I had asked about not knowing what to do about my medication ie should I be taking drugs for a condition he stated I don’t have, hasn’t been answered).

Dr F is sorry to note your dissatisfaction with his assessment and has asked that I include his apologies with this reply.

As part of his investigation, Mr L also spoke to {Care Co-ordinator}  about the issues you raised in relation to the care (!! Not the word I would use) she provided you. CC was sorry to read that you were unhappy with aspects of the care she provided you particularly in the examples where you feel CC spent more time talking about herself in relation to issues around weight loss and having children. CC recalls talking to you in a therapeutic context (in her eyes, maybe) about weight and you are noted as being grateful for the discussion, (she may have noted that. She didn’t ask me if I find it helpful. Mostly I probably just smiled and nodded until she left. My bad). However, CC has clarified that she did not discuss her own children with you and is clear that she did not suggest that you put on some make up when she visited you at home, (this is the comment that infuriates me the most. She did make that comment about the make up and I was devastated. And, if she didn’t talk to me about her children, then how do I know that she has four of them – two teenagers, then a big age gap until the two younger ones and that most of her salary goes on childcare? Did I make that up? No). CC has asked me to convey her apologies for any misunderstanding or distress caused, as this was not her intention.

CC has commented that her role in the assessment appointment on 28th Feb was to ensure that Dr F, who very carefully prepares for each assessment in advance, did not overlook an aspect of your care to date and current presentation. It was not CC’s intention to appear unsupportive, however, she felt Dr F had undertaken a very thorough assessment and there was nothing of significance she could add, given that this was an assessment appointment and not a counselling session, (seriously, I KNEW IT WASN’T A COUNSELLING SESSION….ARRGGHH). Furthermore, CC has clarified that she did not laugh off the concerns you had raised about the failed appointment on 1st Feb, nor did she admit to it being her error, (err, she did, just not to you). It is clear that there was an unfortunate misunderstanding and CC is genuinely sorry for the upset that this caused you.

…then five more paragraphs about the Trust being committed to being a professional and appropriate provider of mental health care and what I can do if I’m not satisfied with the response.

I’m not satisfied, but not in any way that I think could be resolved. I appreciate that it must be hard to investigate a complaint when it’s one person’s word against another, particularly when one of those people is employed by your employers. I think I feel angry about the suggestion that I’ve lied, misunderstood, exaggerated, or been attention seeking. If, where there are no dodgy test results to disprove or plaster casts on the wrong arm to provide an objective basis to a complaint, the investigator is always going to come down on the side of the Trust, what is the point?

I also applied for and received copies of my medical records from the CMHT. So far I’ve managed to read a page of them, (I caught a glimpse of a paragraph that said my GP records are over a foot high – surely not?! I keep looking at the ruler on my desk and imagining that stack of paper and I feel so ashamed. Worryingly, it also stated that there were no notes from the time I was in Scotland. Helpful) and then they were put away. I wish I could remove any trace of myself from NHS databases. I want to be fine. And I am mostly fine at the moment. Wobbly at times, by managing. I’m scared of what might happen if I stop being fine – either physically or mentally, because I feel like I have no faith in medical professionals anymore. All my old fears of being called a time-waster, that stopped me seeking help until things were really bad, is back, full force. I’m terrified of having to see a doctor, imagining what they might be writing about me, the judgements that they’re making. Oh yes, and how I might be misunderstanding what they’re saying …

 

 

 

On being cured….

….. or rather, on never being ill in the first place.

I’ve been avoiding writing here again. I had a bad couple of weeks. On a Sunday afternoon I felt a switch flick in me and starting feeling so, so weird. I ended up taking a week off work as I was largely too scared to leave the bedroom. No reason I can recall. I had been doing fine, I was keeping well, and then, ping, not well. I went back to work last week, even though things were still wonky. I was seeing things – mostly woodland animals (squirrels, mice, foxes) in places where they couldn’t have been. I thought this was funny because it was so benign. The people with scary, melty faces and demon voices I could have done without. Things are better now. Still incredibly sensitive to light and noise, but better nonetheless.

I am shaken by it though. It’s frightening to be well and then suddenly not well. I am furious with myself for taking time off, because I’d gone five months with no sick leave, and now that’s blown. The Boyfriend was rather freaked by these couple of weeks as well, as I gather I wasn’t making much sense. The are gaps in my memory. Holes.

I wrote notes on all of this to take to my appointment with my New Consultant today. I was supposed to see him at the beginning of Feb, but due to a cock-up by my Care Co-ordinator, the appointment didn’t happen.

After suffering the usual waiting room torment of Terrible Music FM, New Consultant introduced himself. Overly enthusiastically, he shook my hand and told me that he, as a doctor desperately wanted his patients to be well. He said that at least five times during the appointment and it made me feel a little queasy.

He said he’d be asking me lots of questions, which I had anticipated as this was our first appointment. He appraised my appearance out loud – you know how they comment on presentation, clothes etc in the letters sent out afterwards – well, he did it during the appointment. It made me uncomfortable, that kind of scrutiny, the comments on my weight, how I was dressed. “And you’ve got a squint in your right eye?”

“excuse me?”
“a squint. Didn’t you know that?”

“no”

“look at Jill (Care Co-ordinator, mute until this point in proceedings), doesn’t she have a squint in her right eye?” I looked at Jill. She agreed. He kept going on and on about this squint and how odd it was that I’d never noticed. I wanted to slide under the table.

Within the first five minutes he noted that my records stated my previous diagnosis was bipolar disorder, but he was unsure if he agreed with that. By the end of the appointment, he’d confirmed that in his opinion, there was no evidence of my having a psychiatric condition, and because the purpose of the CMHT is to assist those with enduring mental health conditions, that there was no real point in my coming there anymore.

I floundered.

He said, “everyone gets a bit down or has up times. I don’t think you’ve experienced anything that isn’t normal”.

My face must have given me away, because he asked me if I disagreed. I stated that I didn’t think that the protracted depression that erased me for months and left me unable to function was normal. And neither was the summer spent burning holes in myself with bleach and not sleeping and thinking I was invincible and stealing lipsticks from Marks and Spencer etc. I looked towards my Care Co-ordinator, who first met me during the summer, hoping that she could back me up. She looked at the floor. He said that he wanted me to have full blood tests and that he would be writing to my GP to inform them of my discharge and ask them to look into the matter of the squint I hadn’t noticed.

What threw me was that he seemed to have looked at my notes, because recounted some of the things from them. I couldn’t put his opinion down to him not knowing my background. I felt hideous, like I’d been accused of making all of this up. Like all of these years, and last year in particular, have been entirely normal and I’ve just been rubbish at coping.

I’m angry, because it took me a long time to come to terms with the diagnosis of bipolar. I’d had ten years of depression as a diagnosis, something that came and went without warning for months at a time, and then left, just as abruptly. The times in between were either fine or better than fine and meant that I didn’t need to see a Dr. It was a consultant in my last CMHT who spent some time talking through my history, asking what happened in the gaps between the depression, and eased me into the idea that bipolar might be more appropriate. Three Consultants since then have agreed.

I’m angry, because although I really don’t want to continue attending the CMHT due to it’s rage-inspiring properties, I don’t necessarily agree that eight weeks of stability (two of which were actually a bit questionable) after a year of utter instability, constitutes recovery. It’s on the way there, yes, but not quite enough.

I’m angry because he stated that the fact I work full-time is an indicator that I’m well, even though I pointed out that I have continued to work whilst blindly unwell. I hate it when people presume that having a mental illness and working are mutually exclusive terms.

Oh, I forgot, I’m not actually unwell, am I? I know I sound bitter, but please, I need to get this out of my system. I’m actually feeling alarmingly fragile and frightened after the appointment. And so, so stupid.

Is there a difference between having a psychiatric condition and having a mental illness? Is there a nuance that I’ve missed? If you have a diagnosis but you’re well at any given point, what is the name for it then?

I’m worried that if it’s on my notes that there’s nothing wrong with me, then it might influence the situation if I need to seek treatment at a later date. Or that my DLA is at risk.

So, in the last two weeks, I’ve lost my counsellor, a psychiatrist and my rubbish Care Co-ordinator. I don’t know what my GP practice will say; previously they’ve been firm that they don’t feel comfortable managing my care and that I should stay with the CMHT. It’s that gap again, of neither being well enough nor ill enough.

Between my appointment and going to the hairdressers, I spent an unseemly amount of time in the toilets of Caffe Nero trying to work out if I have a squinty eye. It doesn’t look squinty to me. I asked The Boyfriend to be honest, and he said it didn’t look squinty to him either. Bah, it’s one more aspect of my appearance for me to feel paranoid about!

It was probably a good think that I was having my hair done, (and not just because it was looking dreadful), because it meant that I didn’t come home and dwell. There was a moment when the hairdresser put her hand on my shoulder and I almost burst into tears. A human contact thing maybe, a moment of comfort.

I don’t know what to think anymore. I want to not have a psychiatric condition, I really do. I’m not asking to stay unwell. But I don’t think that writing off my previous diagnosis is helpful in keeping me well either. I’m also a tiny bit terrified of what physical condition he thinks I might have, that causes me to see woodland animals and demon faces via a squinty eye, (I should say here, his background is liasion psychiatry, so he’s all about the mental AND the physical).

Sigh. Mine’s a gin please.

 

Endings.

Tomorrow is my last counselling session. I’ve known this was going to happen since after Christmas. At first we agreed we’d end it at Easter, but it was clear that the sessions had become more about us having a nice chat than anything more productive. The need for that had gone.

My counselling has been provided through my GP surgery. It began straight after Christmas last year and was supposed to last 12 weeks. Not over a year. My counsellor has been excellent and I have learnt so much in the last year. That sounds trite. This isn’t the post that I wanted to write about counselling – I’m having a lousy week and there is some irony in that, and I am so determined to hide it from my counsellor because I don’t want to end on a sour note. I don’t want her to think that I can’t do this, this whole “being well” thing. She’s the one who stepped in when I was suicidal last year, who helped me push for help from the CMHT, who adeptly dealt with me being monosyllabic or talking sixty miles an hour. Her reflections on how I’ve been during the last 12 months have made me cringe and also helped me to realise how much happened, even though I often feel like I’ve been standing still. 

The thing is, what’s the ettiquette for these situations? How do we end it? We’ve done some work on therapeutic endings, summaries etc, but what are we going to talk about tomorrow? It feels so weird to know that after tomorrow, I’m not going to have that space at the end of each week to be honest, (and it took a long time to get to the point where I was able to be honest – oh, how we laugh now about how in denial I was at the beginning. Except that it’s not that funny, just cringey). I feel like I want to get her some flowers or something, to acknowledge how much she’s helped me, how she risked getting into trouble by extending our sessions “under the radar”, as she put it.

Bah, I wish I wasn’t having such a wobbly week. I want my sense of determination back.

Getting the gin ready for tomorrow night, just in case …

 

 

“let us sit upon the ground and tell sad stories of the deaths of kings”

 

 

You may have already noticed this, but, it is February.

Which means that it is not January

Which means that I survived my historically nasty month.

Hurrah.

Actually, January 2012 revealed itself to be a rather pleasant month, once the aftermath of Christmas overload had dissipated. It rarely rained and all the sunshine through the still-bare branches made the outskirts of the city seem vast and open.

Yesterday afternoon I went to see Richard II at the Donmar Warehouse. Having the afternoon off work provided som me-time for pottering about Covent Garden and it struck me that this is the first time in AGES that I have gone shopping in actual shops and not via the internet. Actual shops that required me to talk to people and, in the case of MAC, actually request that people look at my face. Crikey. But it was fun. I wasn’t dragging myself around, I wasn’t freaked out by the volume of people and I wasn’t wobbled by the fact I was attending the theatre by myself.

Good. An improvement, no? Because this time last year I went to see King Lear and intended to kill myself afterwards, (no fault of the production, just a timing thing).

Last January was weighted. I ached from just walking around in it. I remember feeling so defeated and then so relieved when I started to make those plans – knowing it could end. Quite clearly, it did not end. Professionals came storming in with metaphorical capes as they are wont to do at times of crisis, (I know that sounds facetious and I’m glad they did act, but really, it may have been more helpful if they’d actually done something in the months prior to the crisis). February stung. I resented it. Spent it in pyjamas, wanting to push down the burgeoning snowdrops because I was not ready for the year to move on.

Enough dwelling. Enough dead kings. It still terrifies me that things are good at the moment; I even struggle to type the word “good”, wanting to say “okay” instead…. just in case…. So many Januarys have been hard for me (Januarys and Mays) that the very statement that this one wasn’t gives me cause for celebration.  But after spending yesterday afternoon, engrossed in the play, (yes, the play, and not just Eddie Redmayne’s face), with my packages of tea and makeup and music under my chair, it just felt good, very present, very real.

Pulling a Monica….

Being a teenager in the 1990s, I’m able to relate most daily occurences to an episode of Friends. Today provided a particularly good one – I visited my parents house as it had been my dad’s birthday earlier in the week. I told my mum that I would bake his birthday cake, (because I like baking and often have the excuse to bake a whole cake that wouldn’t result in The Boyfriend and I having to eat half of it each) and I spent a lot of time on it yesterday.

Whilst laying the table for lunch, I spotted that my mum had baked a pie. When I asked why she had done so, considering she knew I was bringing a cake, she replied:

“well, I thought I’d make one … you know … just in case….”

“just in case what?”

“well, in case there were any problems with your cake….”

Sigh. Sigh again. And I think of the episode of Friends where Monica is doing the catering and her mum has already made lasagne, just in case she “pulls a Monica” and something goes wrong with them.

What annoyed me was that she doesn’t have anything to base this concern on - it’s not like I have a history of bad cooking and inedible cakes. Maybe it’s her having to be in control, I don’t know, but I thought it was pretty insensitive. Maybe it’s just me being over sensitive….

Anyway, the cake was pretty tasty, even if I do say so myself. And my dad and brother seemed to enjoy it too (my brother took a sizeable chunk home with him in addition to what he had after the meal. My mum? Well, she said it was ”nice… very rich…..”

Sigh.  

Knit One, Purl One.

Woohoo! I finally finished my first knitting project. I actually finished the knitting part last weekend but it’s taken me all week to sew in the ends, (it’s been a busy week). So, it’s a bit wonky due to my tension changing in the first few colours, but all in all, I’m pretty proud of it. It’s something I didn’t know how to do a month ago. I need a new project now, something straightforward, that moves me along in learning to knit (something with ribbing? A different stitch? Increasing/decreasing?) but that doesn’t frustrate me so much that I want to impale myself on my needles, (drama queen). Suggestions? I’ve been looking on Ravelry and knitting blogs and there are so many cool things to knit, but I know I need to not get ahead of myself. Determined to have made socks before next winter though.

 

 

shhhh …

I’m avoiding writing here again. My time spent on twitter has decreased and I’m being rubbish at reading and commenting on other’s blogs. I feel conflicted. Things are okay-to-good and I don’t know how to expand on that without worrying that saying it will make it all come crashing down again. Tempting fate. Pride comes before a fall. All those old adages. Even by being here, writing that I’m doing okay, I’m practically begging a low spell to knock at the door.

I know it’s a good thing that I’m feeling better. I just hate that I can’t trust feeling like this. My history is that I am either ill or I am well and in complete denial that I was ever ill. There’s no middle ground, no sensible sounding recognition that I have a condition and that there are things I need to do to stay well. I know that this is why I don’t stay well for very long. I so want it to be different, I want to be pragmatic and realistic and happy… but not too happy. I’m terrified of being well. And that sounds ridiculous.