"not even being informed of change of mental health diaognosis"

About: Advocacy Support Cymru Cardiff & Vale University Health Board

(as the patient),

I ended my last story by stating that I was fearful of again having to go through a severe relapse which did include psychotic symptoms such as hearing voices, not being sure who people were so I thought other passengers on the bus were detectives, thinking that TV crime dramas contained personal messages for me and the lampshades in my house spinning round, pretty much alone without appropriate support from my CMHT with just my GP practice to support me. I am extremely fortune that I have an excellent GP practice.

This week I have found out by reading my consultant a Cardiff CMHT latest letter to my GP that she has changed my diagnosis from bi polar disorder to personality disorder. Not only I have not had any discussion around this, (even though at my last appointment my advocate specifically asked that we wanted to know if she was having any thoughts of changing my diagnosis and she did not mention anything), I have not even been informed, finding out only by reading a letter which is not even addressed to me but to my GP. I find it despicable that in 2015 any patient should be finding out about a change of diagnosis in this manner. I do not think it would be considered acceptable in any other area of medicine, for people to find out about a cancer diagnosis or a heart condition in this way would be considered outrageous. I do not think mental health should be any different. and from speaking to people close to me and also my advocate it seems that they agree with me and they would also feel the same way. However when I expressed these thoughts to the psychologist I was told that the letter has triggered a schema so this reaction is being interpreted as everything by the team seems to be now as evidence of personality disorder. I find the whole concept of personality disorders contentious and it seems once a psychiatrist has applied this label to you you are placed in a catch 22 situation as I have described above. The NICE guidelines state that the person should be involved and informed of the diagnosis which I clearly have not been.

Since I was sectioned in 2013 I have felt that using mental health services is the same as being in some kind of prison and in many ways this is what being sectioned feels like to me. However I never felt this way as an out patient until I started using this current team. Another way I feel placed in a catch 22 situation is that I have had to deal with staff being very rude, staring at me, not introducing themselves during phone calls so I was not sure who I was speaking too, receptionist who became aggressive when I politely and calmly asked why my appointment was for 4 months instead of 3 and on top of this when I was prepared to try and trust CPNs again I was abused again as soon as the door was shut. Yet if I point out that this behaviour is rude and unpleasant I am again told that my reaction is to do with my personality.

The contrast between my interaction with my CMHT who are supposed to be highly trained specialist professionals and my interaction with the staff at the private gym I go to is huge. Going to the gym was really important to me when I was ill, particularly being able to swim. My experience of the staff had already been very positive over a period of nearly a year so when I knew I was starting to become unwell I asked to speak to a member of staff in private and explained that I suffer from bi polar disorder and was not well but it was important to me to keep coming to the gym. They were totally professional and also very kind and went out of their to help, letting me use their phone on reception at times to contact my family. My family commented on how helpful and caring they were and how different this was from the mental health services. Another contrast for me was also that the gym staff are always extremely courteous to me and I feel I treat them in the same way

My family and those close to me share my fears about future care as if they are denying that I suffer from psychosis then how will they provide appropriate support when I go through this?

There is a letter in my notes from doctor, now from , a professor right at the top of his field who I saw for a second opinion a few years ago. He does not change my diagnosis from bi polar. Not only did he diagnosis me as suffering from bi polar disorder in the first place, he also treated me for the following 8 or 9 years and for much of that time he saw me as frequently as every 4 weeks and this was what I needed to stay out of hospital. And I was diagnosed in the first place after being sectioned so there was plenty time to observe what was happening to me. As well as being observed my consultant asked me detailed questions about what I believed was happening to me ( this is in stark contrast to my experience of being sectioned in 2013 when no one asked me any questions about my thoughts and feelings). I believed I was on some kind of quest and that I had developed powers of telepathy which made me a terribly special person. I told him all this. I hardly see how these ideas fit with a diagnosis of personality disorder. It seems clear that they were grandiose and delusional ideas and beliefs.

Also this latest letter from the consultant at the CMHT does seem to contain a major contradiction. There is a lengthy paragraph dealing with our conversation about reducing my dose of anti psychotic medication. She says that I was able to weigh up that reducing it may make me more prone to a relapse to do with my mood. Form this paragraph it seems clear that she thinks I need to be on a high dose of a drug that is licensed both as an anti psychotic and a mood stabiliser from which it seems logical to conclude that I have an illness which affects mood and has psychotic features and that this drug is helpful in controlling that.

So how would she go about explaining that she goes on to say that the team at the CMHT have not observed any symptoms of bi polar disorder in 2014 and that what I call psychosis is in fact a paranoid thinking style associated with personality disorder. My psychotic symptoms only occur with extreme mood swings. I am not troubled by them at any other times. Also when the symptoms stop usually after taking high does of anti psychotic drugs I gain insight into the fact that I have been suffering form paranoia and psychotic. If it was a paranoid thinking style associated with personality disorder surely it would be how I think all the time and I would not have any insight into it

Also in my view the team have been remarkably unobservant. My consultant offered no follow up appointment as I have said in my last story even though I told her I had needed to increase to the maximum dose and needed the maximum dose of lorazopam and had been the victim of a crime on a bus late at night which happened because I was unwell and the “ I might get stabbed” mechanism did not kick in. Since she told me just to come back in 3 months she did not see me as I went through a psychosis for the whole of that time period and when I attended the next appointment I tried to tell her about it. However she did not include any of this in her letter to my GP and wrote completely inaccurate evidence that I told her I had had fleeting thoughts of thinking people were other people. What I actually said when she asked me if the thoughts were fleeting was very clearly that no they were not, they were thoughts that lasted weeks. My Dad was with me and can confirm this. He also told me that he thought I made it very clear to her that I had been experiencing psychotic symptoms. I have never felt able to attend an appointment with her alone and at every other appointment I have had an advocate with me.

I also feel she is being highly selective in whose opinion she is seeking. She does not seem to be listening to my GP with whom I have an extremely trusting relationship for nearly 20 years and that relationship has survived him sectioning me twice, the first occasion being the first time he ever met me. After being sectioned in 2013 when he told me we were able to shake hands. And as I have said already she seems to be dismissing the opinion of my first consultant who knew me for far longer than she has done and gave me appointments far more regularly as well. The head of pharmacy also has a good grip on what I have been through and as I said in my last story it was a meeting with her that meant I was able increase my medication and not end up sectioned as I did in 2013. however it seems the team have not included her, they invited her to a case conference but only gave her about 2 days notice and she was on leave and could not make it. And I think since then they have not sought her opinion and my consultant told me she was not happy with me contacting them. I'm not sure what I was supposed to do though as I could not access any support through her or the rest of the team. 3 other consultants also did not express any thoughts that my diagnosis was incorrect.

My consultant has refused my request for a second opinion despite the fact that we have an academic team locally who offer this service and as I understand it there is no cost to the referer for the service. She says there is no need as a currently stable not understanding that given that I only have 48 hours to act to avoid becoming life threatening unwell it does not make sense to wait for a crisis to seek this opinion and I would rather know what future drug options there are when I am well and able to understand and ask questions and carry out my own research. This is what I have always done over the past 19 years and it has worked well for me and means that when I am committed to a treatment option I am committed and do not just stop taking medication suddenly. While this drug is working better for me than anything else has we do seem to be needing higher doses and for longer periods of time which makes me wonder if eventually even the highest dose won't control things.

the NICE guidelines as far as I can see specify 2 different personality disorders, borderline and anti social. She has used neither of these terms so I am unsure what her diagnosis is exactly. The following was the NICE guidelines for borderline personality disorder that anti psychotic drugs were not recommended for treatment of personality disorders and any medication should only be prescribed in the short term for no longer than one week. talking treatments were recommended. So if her diagnosis of personality disorder is correct I should therefore be able to come off my medication. There is no way I would do this because I know that I need it to stay alive.

The only time I have acted on suicidal thoughts was when I took 2 overdose in one week at a time when I had again been left to deal with a severe manic relapse without support from my CMHT and because the manic phase was very severe and not well controlled the low was also very severe and came on very quickly. I had come off medication prior to this, although I did do so under strict medical supervision from my first consultant. I had been paying for private counselling as at that time it seemed the only way I could access talking treatment and the counsellor had convinced me that by doing this I had “recovered” so I came off medication and also got a paid job. By the time I became ill my consultant who I respected and had an extremely good relationship had left, so this was the first time I had to deal with it without him and I took a very serious overdose and could have died. I attended an appointment with my new consultant while still an in patient at the poisons unit and I think she just said come back in 3 months. I felt ashamed of what I had done but had no one to talk to about how I felt. The reason I overdosed in the first place was because I thought I had failed. I had tried all sort of medication that had not worked and I had tried talking treatment yet still I was very ill and I had failed to hold down a job. I was 30. I had spent 10 years battling and being very ill I thought my whole life would be the same as the previous ten years and I could not face any more. It was not a cry for help or attention. The week I spent in the poisons unit was so awful that the reason I did not try again was because I could not face also failing at dying and the thought of ending up back there again was also terrible. So I grit my teeth and spent the next couple of months living at my parents house so I had no chance to be alone and overdose again. I do not have a history of constantly self harming and overdosing. But my thoughts of needing medication to stay alive are not melodramatic.

The fact hat this did happen once at the time when I felt very unsupported by services does make me and the people close to me concerned, on top of everything described already in my previous 2 stories.

And although I am now glad that I did not die my 30s have certainly been no picnic either. However I did manage again to access excellent support from a pharmacist who was already known to me as she had taken a role in giving me information about medication options and when I contacted her again she told me she was now qualified to prescribe under guidance agreed with a consultant. So once again I felt safe and supported with very regular contact from someone who was very knowledgeable, conscientious and easy to get on with. The only reason this support ended was that she went on maternity leave and decided not to come back to work. Within a few months of losing this support I ended up sectioned. (See first story)

I am an expert patient. I feel that I have had to become one in order to have any quality of life at all. To manage for 17 years without an effective mood stabler and with mood swings that come as rapidly as mine do I have had to learn to recognise early warning signs and have anti psychotics in the house so that I can be the one who makes the decision when to start them. The only time I did not know how to do this myself I ended up sectioned having avoided this for 17 years. One of the things that I feel was so positive about the relationship I had with my first consultant was that he was encouraging of me managing things myself and he taught me to trust my own judgement, having first taught me how to identify early warnings signs etc. I thought this was the principal behind newer initiatives such bi polar education programmes which I think were first developed in Cardiff. However I feel that one of the reasons I have run into such problems accessing services in the last 2 years since the pharmacist left is that mental health services in reality cannot cope with expert patients. They certainly don't seem to be used to them and they seem to me to respond by becoming defensive and turning me away and thinking that if I am able to explains things I cannot really be as ill as I am claiming to be. I cannot unlearn what I have learnt and I see no reason to. I think it is very valuable and has kept me alive long enough to have now found a drug which does work better for me, although I have still had 3 serious relapses on it. And I am frustrated by the assumption that by current consultant has made that because I have not responded to standard treatment that somehow it must be that the diagnosis is wrong. It could be but not necessarily. I feel we should be dealing with evidence.

My understanding was that western medicine is evidence based. There are other facts which the team seem to be ignoring. I spent £3000 while I was unwell last year. This is half the all the money I owned in the entire world. I did things like spend over a £100 on soft toys. This is not a decision I would have made if I had been rational. TO me clearly this is evidence of a manic spending spree. I do not normally spend money like this and I live within my means which is why I did have this money in savings. I have spent money unwisely when I have ill before but never thousands. Before it was limited to hundreds but this relapse went on for 3 months.

I do not sleep at all at these times. I experience pressure of speech and other things that are well known symptoms of mania. Also my history shows that I swing from these states quickly into depression which is classic bi polar. The team have not seen these lows but that is because quetirepine works really well at preventing that and I have explained this to them.

I also have very definite danger times when I might become manic, which are always around the times when the clocks change so I am now approaching a danger time as the days are becoming longer and it is ironic that the people who are supposed to be providing support are actually just causing me stress at a time when I really don't need it. Again I don't see how being so effected by changes in light fist with personality disorder.

And I have been sectioned twice because I was a danger to myself but not because I was suicidal. Again I don't see how this fits with personalty disorder. Also the NICE guild-lines state that personality disorders can occur and be diagnosed in conjunction with other conditions such as depression, eating disorders and bi polar disorder so it is not an either or situation. This makes sense to me as all of us expect that we can more than physical illness or ailment that can occur at the same time so why should people be limited to only one mental health diagnosis? This was my understanding of my situation before I read the letter, that no one disputed the bi polar diagnosis but following the assessment from the psychologist the team recognised that I did have additional difficulties which could benefit from treatment with the psychologist. I also made it clear to the psychologist form the outset that I was uncomfortable with the whole concept of personality disorders and labels in general and just wanted to work on solving problems.

Everything I have said here about my history can be confirmed by reading my notes. My consultant told me to my face in the presence of my advocate when I asked her if she had read my notes that she did not have time to read my notes, she was only able to offer me time during clinics. After saying this to me she went on to write a letter to my GP which said I had “accused” her of not reading my notes. Close reading of this letter told me that nowhere did she say she had read them. I “accused” her of nothing. I pointed out she had not read my notes and she agreed that she had not.

I do not have any answers, but as the patient I feel I don't have to any, that is perfectly acceptable for me to be asking questions, and I have been left very confused by reading this letter and my own research. I feel I have been patient and constructive with the team. So when I found out that they did not understand I had been psychotic I spent a great deal of time trying to explain this to them and put things in writing. I asked for a meeting with the integrated manager but she did not respond and later said she thought everything had been dealt with. Approximately 3 weeks ago she said she wanted a chat with me but gave me only an hours notice and my journey to the CMHT on public transport takes nearly an hour. We had a 10 minute meeting and I said I would like a further meeting with my advocative present. She agreed to this and asked me to get some dates form my advocate. It has taken appropriately 3 weeks to set this up for a date 4 weeks ahead. My next appointment in March is not with the consultant but with the registrar. When I agreed to a change of doctor it was not explained clearly to me and what I thought I was being offered and accepting was a change of consultant. The manager told me it was up to me who I saw but I was unaware at this point that my consultant had attempted to change my diagnosis in this manner. I was told I could ask if there were any appointments with her which I have done to be told that are not any. So I have no opportunity to discuss any of this with her face to face. I have been keen all year to express my needs very clearly so that I can get appropriate support to avoid becoming unwell as mentioned in my first story. Yet all my attempts to do this seem to being hampered so that here I am posting on a public website because I am left feeling that this is the only way to be heard right now.

Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from Sheila Harrison, Assistant Director Patient Experience, Cardiff and Vale University Health Board

Hello Dragonvoice

I am really sorry to read of your experiences and have spoken to the Clincal Board Nurse for Mental Health Services about your posting. She has said that she would be pleased to meet you in order to be able to formally investigate the issues your raise.

if you would like to meet please email me privately and we can arrange that

sheila.harrison@wales.nhs.uk

or

If you do not wish to meet you can of course send a us a formal complaint which we would investigate. I have attached the link to the Health Boards complaints process.

http://www.cardiffandvaleuhb.wales.nhs.uk/concerns-complaints-enquiries

regards

Sheila

  • {{helpful}} of {{total()}} people think this response is helpful