Below is a transcript of yesterday’s (17th April) appointment with the psychiatrist. It was a very difficult appointment for me, even with the support of Paul and my advocate. I felt like I was on trial. We’ve put the more omg statements in bold but it’s all pretty awful. I’m not sharing this for sympathy or anything like that. I’m sharing to make people aware and to help them understand. Adult services are a joke and they don’t cater for PDA. If this doesn’t change soon then the system will be flooded with soon-to-be adults being forced into a system that doesn’t even try to understand them but instead judges them tries to change what can’t be changed and fix what isn’t broken…………..
*Firstly – wouldn’t shake advocate’s hand or greet us. We travelled in silence in the lift. She didn’t hold doors open for us, just let them fall back. One nearly hit Julia!
No “please have a seat” (especially to me and advocate)*
Dr Innes – (studying notes on screen) “You (Julia) may have cancelled several appointments [Julia cancelled only one!]. There may have been others cancelled as well. There is an enormous amount of documentation missing so until we have that, the assessment is not complete”
Dr Innes – “I want to check with you while your friend’s [our advocate] still here – is there anything in the background history that you would wish not to be discussed in front of her?”
Julia – “No”
Innes – “No? So she knows about all of it, does she?”
Julia: “Well if she doesn’t, she will in a minute!”
Dr Innes – “Had I received the information I requested five months ago, I would have been in a better position to refer you to our clinic that specialises in the prescribing of those drugs for a review of the matter”
Julia – “I’m not responsible for what the GP does and doesn’t do”
Dr Innes – “Indeed. Nor am I, actually. The most I can do is keep writing letters”
Dr Innes: “I am – not on the basis of the available information – convinced that the criteria for continuing a fairly high dose of a stimulant medication which is a controlled drug is actually being met and now I’ve committed quite a lot of time and effort thinking about this and getting further information. As far as I’m concerned, this is still an assessment that has not been completed but professionally I’ve been placed in a difficult position and I’m also aware that your interaction with GPs has had its difficulties and there have been a number of complaints and one change of surgery within the last couple of years – for what reason, I don’t exactly know. But what I’m saying – clinically, ethically, this is not an easy situation.”
Julia – “All this red tape stuff is nothing to do with me, I’m not – it’s not my problem
Dr Innes – “Well, in a sense it is your problem because you’re receiving this on the willingness of people to prescribe it. Now you’re 36 years old – most people of 36 even with a childhood diagnosis of ADHD are not still on Ritalin”
Paul – “Are you saying that this is something you can grow out of?”
Dr Innes – “What I’m saying is, this is normal prescribing practice and people do improve with age.”
Advocate – “But it’s not unheard of…is it? It’s not unique?
Dr Innes – “It’s not unique, no, but nor is stopping it at 16 that’s commoner, to still be on it at 36 a lot commoner” (we are aware this makes no sense)
Dr Innes – “How much do you weigh?”
Julia – “No one’s business!”
Dr Innes – “I see you’re drinking a can of Pepsi Max – can I have a look at it please?”
Julia *slams down can* “For…?”
Dr Innes – “Caffeine”
Julia – “Right…it has caffeine in it…”
Dr Innes – “How much energy drinks or caffeine-containing drinks do you drink a day?”
Julia – “Well, that’s my only drink. I have one tea in the morning and then Pepsi Max throughout the day, so it depends obviously on what I’m doing, how hot it is – it’s my main liquid so I can’t…
“Dr Innes – “Ok…this is 330 mls *still examining the can as if studying outer space object* It doesn’t say how much caffeine. It doesn’t actually say that, does it?”
Julia – “Well, it isn’t actually an energy drink…”
Dr Innes – “Well it has got some caffeine in it. Do you drink coffee or energy drinks?”
Julia – “No”
(following discussion about Paul helping)
Dr Innes – “How do you feel about that?”
Julia – “Fine, it’s just how it is”
Dr Innes – “Do other people help you in this way?”
Julia – “If Paul’s not around and I need help, then yeah”
Dr Innes – “How many people help you?”
Julia – “I’ve got a friend in the village who is on hand when Paul is away so if I need anything, day or night, I can ring her and she will come down. I’ve got a friend with a car who’s said that if the cats are ill, she will help.”
Dr Innes – “What do you do for them?”
Julia – “Friendship! It’s a two-way street…”
Dr Innes – “Ok. What do you actually do for them?”
Julia – *exasperated sigh*…”Well, we go places together, we talk – you’re asking me to define friendship?”
Dr Innes – “Yes…”
Julia – “Well, it’s two-way isn’t it. If one of them has a problem, then I will listen and try and help”
Dr Innes – “What about if one of them needed you to do something physically…like pick them up something?”
Julia – “Well, I’d ask Paul to do it, ‘cos I don’t go out on my own, so I couldn’t pick up something. And plus, they wouldn’t ask me to do that because they know I couldn’t, so… “
Dr Innes – “Ok. What if Paul wouldn’t do something that you wanted him to do?”
Julia – “But he would, so… *laughs*. That would never be a problem”
Paul – “…I think also what those friends give is a kind of atmosphere and an understanding of PDA that she doesn’t get too many other places…”
Dr Innes – “Mmm….”
Paul – “…and that’s worth its weight in gold”
Dr Innes – *subject-change!* “Do you understand why I referred you to an OT?
Julia – “No”
Dr Innes – “Ok. Most people’s relationships are a bit more two-way than yours– people can ask things of each other…”
Julia – *sighs* “Yep…”
Dr Innes – “You see what I mean? It sounds like you have the understanding that Paul will do absolutely anything that you ask”
Julia – “Mmm”
Dr Innes – “But you’re also saying that you can’t do these things yourself. If he didn’t do them, they wouldn’t get done. So that means he has quite a lot of power over you and I don’t know how you feel about that”
Julia – “Oh, for fuck’s sake!”
Paul – “Sorry, I… *speechless*
Julia – “I mean it nicely but if you knew Paul, you would know how ridiculous that sounds (laughing). He is my partner and my carer. It is no different than if I had a physical disability and I needed help. That’s not about controlling – that’s about somebody helping another person. It’s not a power struggle.”
Dr Innes – “Ok, I haven’t said it was a struggle…”
Julia – “Ohhhhhhhhh, for fuck’s sake… (laughs)”
Dr Innes – “The point of the referral to an OT is that you might be able to help…might be possible to help you do some of these things you haven’t been doing”
Julia – “I don’t do those things because I have PDA! So, sending me to an OT is like pissing in the wind. It’s not going to make any difference! If I can’t motivate myself and make myself do everyday tasks that everyone else does then I can guarantee you an OT will have no chance”
Dr Innes – “Let me put this another way to you. You’re saying that the issue is basically lack of motivation”
Julia – “No!!!!!!!!!!!!! Uh… Do you know anything about PDA?”
Dr Innes – “I deal with human beings, more than I deal with conditions”
Julia – “No…do you know anything about PDA?”
Dr Innes – “People don’t want to do things, so they don’t do them”
Julia – “That’s got nothing to do with… I avoid everything, I avoid things I enjoy, I avoid things I don’t (enjoy) – I’m sure you do, everyone does. But I avoid EVERYTHING and it isn’t a choice! It’s not a conscious choice. If you knew about PDA, you would know that and you would know how ridiculous you sound”
Dr Innes – “You think other people have conscious choices?”
Julia – “Yes, when it comes to getting up and getting washed and dressed. Yes – they either do or they don’t. You made a choice this morning to get up and get washed and dressed. I had to physically force myself to do that and it’s not just because I‘m here – I have to do that every time I go out. I don’t get washed and dressed unless I’m going out so I avoid that problem.”
Dr Innes – “Hmmm. What do you think that the correspondence that should be on its way is going to say?”
Julia – “(exasperated) I don’t know what she’s sending, so how would I have any clue?”
Dr Innes – “Well, it’s about you – it’s a large volume of correspondence about you, isn’t it – what do you think it’s going to say?”
Julia – “Well, if you choose to read it, then you’ll find out about PDA! And ADHD. And you’d know about my diagnosis, or re-diagnosis from the Maudsley…”
*Conversation about chasing up docs..*
Dr Innes – “Do you think there’s any input other than people doing everything for you that’s going to make any difference to this?”
Julia – *sighs*
Dr Innes – “Do you even want to make difference to it? I mean, I think that’s a reasonable question under the circumstances because we’re only in the business in psychiatry of providing inputs that change something”
Julia – “ASD is not a mental health problem. You are sat in front of me trying to cure autism!
Dr Innes – “Err, no I’m not, actually…”
Julia – “Well, you are, because PDA is a form of autism. You want to know if I would like to be able to do these things for myself. Well that’s like asking somebody who’s paralysed from the neck down if they’d like to walk. Theanswer would probably be yes but it’s an irrelevant question because it won’t happen! It can’t happen (further example…blind people)
Dr Innes – “First of all, there are people with high spinal injuries who are paralysed at the point of injury who do manage to walk again but it takes a lot of work – it’s not comfortable. Secondly, some people will gain worthwhile function and independence even with physical disability – there is an issue what’s biologically possible…
Julia – “(cuts off – had enough!) Do you not think I’ve tried in 36 years on the planet”?
Dr Innes – “I’m sure the correspondence…”
Julia – “No! Do you not think I’ve tried personally to help myself over 36 years?! Cos I’ve certainly had fuck all input from you lot!”
Dr Innes – “I think we need to get back to the previous question about the value of input. Now I do see people with typical autistic disorders and the reason I see them is because either we (inaudible)…or we are providing input which is useful. If there’s nothing useful that can be done we don’t see them because it’s not a sensible use of this resource and it’s not a sensible use of their time. Most of the people I see in this clinic have got or have had in the not too distant future some form of identifiable psychiatric disability for which they’re wanting help to change…”
Julia – “I’m here for ADHD which is also not a psychiatric condition but there we are!
Dr Innes – “Well, you may not feel it’s a psychiatric condition but the medicationprescribed for it acts upon the central nervous system and after the age of 18 I think can only be prescribed by psychiatrists.”
Julia – “Still not a psychiatric condition but there we go…”
Dr Innes – “There are strict regulations about controlled drugs”
Julia – “Well, you follow your rules and I’ll follow along”
Dr Innes – “My rules about this are I expect to be receiving that correspondence within one month...”
Julia – “Don’t give me a deadline! What am I supposed to do – go into the surgery and get it myself and bring it up here?”
Dr Innes – “The GP will not do that…”
Julia – “Well, exactly! Why are you giving me a deadline? Get on the phone to her and give her the deadline!”
Dr Innes – “I will be doing that in the letter I send them”
Julia – “Cos I’m not having any input between you and the doctor – if you two want to argue the toss over who should send what, that’s between you two!”
Dr Innes – “Do you not think there’s a bit of a discrepancy between you saying you can’t do anything at all and you spending such a lot of time on this issue?Trying to persuade me to prescribe something that I’ve already told you…”
*all speak at once – drown her out*
Julia – “Are you going to prescribe Ritalin today?”
Dr Innes – “Yes but for one month! And then I will see what evidence there is…”
Julia – “Well then you can pick up the fucking pieces after!”
Dr Innes – “What pieces do you think there are likely to be?”
Julia – “When my life disintegrates before us. We can all sit back and enjoy that”
Dr Innes – “What would happen to your life?”
Julia – “I wouldn’t have one.”
Dr Innes – “Ok, how would it be different to the life you’ve got at present? What would you expect to see changing?”
Julia – “Well, I would have no friends, no relationships, I wouldn’t be able to go out or enjoy myself”
Dr Innes – “You don’t go out!”
Julia – “No no…I do go out. I don’t go out on my own, without support.”
Advocate – “But I also think what’s missing there is that Julia has achieved a great deal with the medication and with Paul’s support and I think that will fall apart completely without that. I don’t think you’re seeing a picture of how Julia is with the medication
because we’re getting bogged down with details which aren’t necessarily giving you a picture.”
*Conversation continues…*
*Julia describes unmedicated Julia…*
Julia – “Ritalin gave me my life back and you’re expecting me to say ok, fine, take it away”
Dr Innes – *Asks new question (unrelated)*
Julia – “I love the way you glossed over that bit (Dr Innes glossed over this comment too!)
*Talked about how Julia fills her time. Advocate was explaining what Julia does when Dr Innes interrupted…
Dr Innes – “Can I stop you here from a moment. If your friend had not said this, what would you have done?”
Julia – “I’m closing down, so nothing.”
Dr Innes – “Right”
Julia – “I’ve had enough”
Dr Innes – “Ok. That’s fine”
Advocate – “You’re in defence mode, aren’t you – I can see that”
Julia – “I’m nice and angry, yeah!”
Dr Innes – “So the Ritalin doesn’t prevent that?”
Julia – “No, it enables that!”
Dr Innes – “It doesn’t prevent you getting angry?”
Julia – “Well, no!”
Dr Innes – “If you go to a meeting and someone asks you a question, who responds?”
Julia – “Me! (surprised!). They don’t piss me off, though…you do!”
Dr Innes – “But sometimes you must be challenged….”
Julia – “Not like you do! They don’t sit there and pick you apart. And fuck about with your life!”
Dr Innes – *interrupting* “How do you respond to questions?”
Julia – “…and make threats”
Dr Innes – “You can respond to questions, though?”
Julia – “In a normal situation, fine.”
Dr Innes – “Ok, so it’s not that they’re saying, ooh we’re asking Julia, who’s that man next to her answering for her…you can do that?”
Julia – “Do you have to sound quite so surprised?!”
Dr Innes – “But I think it is worth commenting…”
Julia – “I’m only defensive now because I’m sat here in front of you”
Dr Innes – “Hmmm”
Julia – “I don’t like you and I don’t like psychiatrists, so why should I be respectful of you when you’re not respectful of me?!”
Dr Innes – “It’s not actually an issue of respect”
Julia – “It bloody well is!”
Dr Innes – “Now, you may well not like psychiatry…”
Julia – “PsychiaTRISTS…I have no problem with psychiatry”
Dr Innes – “People don’t have to like mental health professionals”
Julia – “I do if I’m supposed to see them!”
Dr Innes – “Well, you’re making it quite clear the only reason you’re seeing anyone is for a prescription. I hope I’m making it quite clear that there are real professional…”
Julia – “I don’t need you lot coming into my life again and dicking about and messing about with things.”
Dr Innes – “You will not be having prescriptions for this type of medication unless people understand what is going on in your life”
Julia – “But you DON’T understand! That’s the whole point. You’re asking me if I have a go at people at meetings – well of course I don’t because I wouldn’t still be on the committee. “
Dr Innes – “No – nor if you couldn’t answer relevant questions”
Julia – “So, if other people treated me the way you do, then no I wouldn’t be on the committee”
Dr Innes – “And the sort of questions I’m asking about your functioning and your symptoms are exactly the same questions I ask other patients with ADHD. Whether they’re 18 or whether they’re 14”
Julia – “That’s why your reviews are so wonderful!”
Dr Innes – “Well (more glossing!) – those are the sort of questions that a responsible psychiatrist would be asking”
Julia – “Yes but if you knew anything about PDA, you’d know how to phrase those questions”
Dr Innes – “Well”
Julia – “Well…”
Dr Innes – “…I think that (stutters) the difficulty is some questions are hard to answer. Now, what makes them hard to answer is worth thinking about.
Julia – “You should so go into politics! Your ability to not answer a question and actually answer it with another question is…hats-off!”
Dr Innes – “If people don’t answer questions, you wonder why they’re not answering”
Julia – “I’m not answering them because I don’t want to”
Dr Innes – “Fine”
Paul – “Another aspect is that you’ve said it will only be another month of prescription so why would you now go into a line of questioning that’s irrelevant? With respect…what’s the point?!”
Dr Innes – “Because the – (finds words) – in order to prescribe the medication for a condition, you need to establish the state of that condition. I would have thought that was obvious”
Julia – “Yep“(sarcastically)
Dr Innes – “The normal response to how are you doing, what are your symptoms is to tell you how…”
Julia – “I have!”
Dr Innes – “Not to complain about the question, to answer it”
Julia – “But do your patients normally have ADHD and PDA?”
Dr Innes – “Erm…I have several patients with ADHD. Patients with PDA tend not to, they tend…if it exists – it’s a disputed category without any clear standard treatment guidelines.”
Julia – “It might well be but my diagnosis stands, unless you’re another professor you cannot undo the diagnosis. You can diagnose alongside and you can add in all sorts of other diagnoses if you want but you can’t undo it”
Dr Innes – “Hmmm.”
Julia – “So, tough shit on that one, love!”
Dr Innes – “But, within our service and within many other services I would think there is nothing specific for the condition involving basically not doing very much at all”
Julia – (laughs)
Dr Innes – “We look at people’s motivation to change, whether we can provide anything that will help them change but if there is no…”
Advocate – “So, you’re saying you have a condition which is about motivation not to do anything at all?!”
Dr Innes – “Yes”
Julia – “So, laziness?”
Dr Innes – “Well, you could formulate it as laziness. I haven’t actually done that...erm but I think if…”
Julia – “What is wrong with me then, if it’s not PDA or ADHD?”
Dr Innes – “Well, the difficulties you’re describing which are interpersonal, difficulty in managing your emotions and behaviour, difficulty in responding to what most people would call ordinary demands of adult life and settings – I think you ask a great deal of other people and it’s clear there are limits to what you can provide in return. I think that it’s most appropriately conceptualised as your personality…”
*Advocate – stresses how much Julia does and the impact it has…*
Dr Innes (to advocate) – “And presumably she’s told you about all of this?”
Advocate – “Yes! And I can see it as well”
Dr Innes – “So, one of the things you’re doing for her is saying something that she might otherwise have said for herself”
Advocate – “Yes, if she was not in a stressful situation. At the moment, the way that Julia reacts is in fight and flight and the only different things that are happening is she’s not yet flown, which I’m quite surprised at…”
*Advocate: continues to stress the positive impact Julia’s had on community in short space of time…
Dr Innes doesn’t acknowledge this and rambles on about the lost OT referral…*
*Dr Innes’ phone rings. She cuts Julia off, answers without excusing herself or apologising afterwards…*
*Dr Innes continues to ramble on about clinical reasons for stopping Ritalin suddenly (e.g. heart risk)*
Dr Innes – “If there is no psychiatric reason to continue it, it will be withdrawn”
Julia – “So based on all that, you don’t think there is a psychiatric reason to continue?”
Dr Innes – “I’m sceptical but I’m awaiting further information”
Julia – “Wow…”
Advocate – “And is that because of the things that we’re saying she’s able to do?”
Dr Innes – “No…it’s not only that.”
Julia – “So what makes you think I don’t have ADHD then?”
Dr Innes – “Hmmm…even if you had a clear historical account of ADHD, at the age of 36 – I’m sceptical”
Julia – “It’s a lifelong condition!”
Dr Innes – “Hmm, well, people’s brains change with age”
Julia – “Yeah but…it’s a lifelong neurological condition!”
Dr Innes – “Um…”
Julia – “Are you up to date on research?!”
Dr Innes – “People’s brains change with age”
Julia – “Yes they do but are you up to date with research?!”
Dr Innes – “People’s propensity to develop complications…”
Julia – “The NHS website who you work for – their website says it’s a lifelong neurological condition. I think it’s quite funny!”
Dr Innes – “People’s personalities, cognitive abilities and the physical structure of their bodies change with age – what’s appropriate at one age is not necessarily…”
Julia – “And you’ve known me for how long and decided that? Without reading all the stuff”
Dr Innes – “I haven’t had it to read”
Julia – “But you’re making this assumption based on no evidence because you haven’t had any. You’re putting your cart before your horse!”
Dr Innes – “Right (moving on!). There are several other things I need to do and you’ve already overrun the appointment time so we’ll finish there and I’ll give you one further prescription and I’ll require the trust or if necessary the CCG to update me about what’s happening with your request for a change of consultant because they’ve not done that.”
Julia – “Again – not my fault”
Dr Innes – “No but my professional responsibility’s here and these include the need for extreme care about the prescribing of controlled drugs. So, I‘ll try to see you again in about two months”
*following some debate, the next appointment is now in three months. Additional debate about prescribing of Ritalin follows…*
Dr Innes – “I’ve done all I’m going to do about this today, so can you go downstairs and book your next appointment”
Julia – “And the prescription?”
Dr Innes – “Well I’ll write it and it’s been uploaded by the secretary”
Julia – “How long will that take?”
Dr Innes – “If I can start in a couple of minutes, I’ll start in a couple of minutes! I need to go out and get the prescription pad before I can do that”
*No official close to meeting and no goodbyes – we simply walk out*
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