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Post by advertisethis346 on Oct 20, 2016 12:27:02 GMT
Hi all,
After stumbling across some accounts of people with ADHD and wondering if they had stolen my life story, I've looked into it a lot and am certain this is what I have, as are my family (which on its own makes me luckier than many). I made an appointment to see my GP the next day. The appointment was awful, but I managed to convince him to refer me to a psychiatrist. He was extremely hesitant as apparently adult ADHD is "very rare" and he seemed incredulous that my school didn't catch it while I was there (right with him on that one) but he agreed to refer me, if only to get rid of me. According to him it wasn't possible to get referred to a specialist as I live in Wales and well, there aren't any here. He also said that he would contact me if he had any questions, but otherwise to sit tight and wait for the psychiatrist to get in touch with me - in other words, "don't call us, we'll call you".
What I'm wondering is, how long can I expect to wait? I'm finding it hard not to think about and he gave me no idea of how long this might take. I've heard of people having to wait several months for an appointment with a psychiatrist. Also, when I see this psychiatrist, will they be able to diagnose me, or will they refer me to a specialist, meaning I'll probably have to wait even longer? I'd be so grateful for any help or guidance anyone can give. Either I do have this and I want to know so I can talk to my friends about it, or I'm just completely unmotivated and unable to take control of my life and I need to take responsibility for it. Thanks for your patience if you read to the end!
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Post by vagueandrandom on Oct 21, 2016 12:50:18 GMT
Hi! I remembered seeing your post on my phone, but it hasn't shown up here yet
as it's your first post and needs to be approved by admin. .it probably doesn't help
that your username looks like spam. . .
Anyway . .your experience is not unusual. .if you're lucky, the general psych will know
a bit about ADHD, but more likely they'll diagnose you with anxiety/depression/bipolar/personality disorder. . .etc . .
Your GP is wrong. . .about pretty much everything he said about ADHD. .
and I know there are ADHD specialists in Wales . .they might not be in your CCG area. .
but they're there. .
I can't really say much more now, but am posting this in the hope that it speeds up your OP visibility
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Post by advertisethis346 on Oct 22, 2016 13:27:19 GMT
Thanks so much for replying, I wondered why no one has replied, This is the same username I use for everything though :/ I don't know if you'll see this reply, but I just found out that I've been referred to a 'Primary Link Care Worker', is this typical? From what I can gather their job is to assess whether or not people should be referred to psychiatrists. I have family in mental health who insist this is just how things are done, but I can't help but feel like I'm getting palmed off, considering this website suggests I ask to be referred to a specialist in ADHD and I'm not even getting seen by a psychiatrist yet.
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Post by vagueandrandom on Oct 22, 2016 18:30:11 GMT
Hi! The referral process varies from area to area. It's common to be assessed to see if it's worth the expense to refer you to a specialist and rule out any mental health issues that share similarities with ADHD. .such as BPD, bipolar, depression and anxiety. . although these can also be comorbidities (just to be confusing) . . It's also frustratingly common for ADHD to be discounted and a list of mental illnesses misdiagnosed. . This recently happened to me when I'd already been diagnosed with ADHD. I know some people in Wales with ADHD, who are not on this forum. .I'll ask them how it works as Wales NHS is slightly different from England. Have a good weekend.
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Post by advertisethis346 on Oct 23, 2016 9:01:11 GMT
Thanks for this! I've seen you all over this forum, I think it's really commendable that you spend time helping others so much. I've spoken with someone a friend who was referred to a Link Care Worker and they did say it's a positive thing, that they would help me with paperwork and getting referred to a specialist. As for the co-morbidities, I've looked into that as much as I can. I'm lucky that I have family who work in mental health and they flat out said the idea of me having bipolar, or anxiety or depression just doesn't make sense. I'm hoping if I share this with the Link Care Worker, they will understand why I want to see a specialist, so they ask the right questions. Someone unfamiliar with ADHD might ask "do you have difficulty with personal hygiene or keeping your house clean" and when I say "yes" may write it off as depression. But if I explained this is because I find brushing my teeth boring, or that I set out to clean things and then get distracted, they will get a much fuller picture. Trying to stay positive about this anyway. The difficulty is I know from the experience of others that doctors hate people trying to diagnose themselves. But I also know that doctors aren't gods and can't know everything. If most of their patients have anxiety or depression, they may ask about them, diagnose me and call it a day. I just want someone who will ask the right questions
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Post by vagueandrandom on Oct 23, 2016 10:38:31 GMT
Hi advertisethis346 You're lucky to have such an understanding and supportive family. I know that my advice can flag up negative experiences you may come across, but it's only to prepare you for possible difficulties because it can be so upsetting, demoralising and can cause even more self-doubt if your request for assessment is turned down. As I often say, if you think you've got ADHD, you probably do . . This forum has saved my life and given me support, when no-one else understood, which is why I want to help others. I'm still having problems getting to see a specialist on the NHS, due to moving house (it's ridiculous) If you've been reading around, you'll notice that I have a problem with ADHD being treated within the MH service, which is geared towards identifying and treating common mental illnesses . .if they decide you're mentally ill, it's really hard to disagree without them putting it down to you being mentally ill. . . . Which part of Wales are you in?
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Post by advertisethis346 on Oct 23, 2016 11:30:47 GMT
That sounds really tough, I'm sorry you've had to go through that. I can imagine how that could happen all too well sadly. There's that common phrase in medicine, "if you hear hooves, think horses, not zebras". Sadly I think that gets misinterpreted by too many as "the first thing you think of is probably right". And the circular thinking of things like "I'm not depressed" "well you are probably just in denial about your depression" and so on. I know when I started piecing things together I thought of going private, but there's no way I could afford that - particularly if they decide I need medication. I'm based in Denbighshire at the moment. So far things haven't been too bad, I'm just getting stressed out because I want it fixed like, *now* but I know I need to be realistic. I also just found out another close family member was diagnosed with ADHD as a child, and one of my parents is pretty sure they have it too. if I'm not wrong I think ADHD is very commonly hereditary, so I'll probably mention that to the Link Care Worker.
Sorry for waffling, I'm sure there's plenty of other people on here that need your help more than me!
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Post by vagueandrandom on Oct 23, 2016 19:21:16 GMT
Hi. OK, I've heard from my Welsh friends. . One in the North and one in the south. . it seems like I was wrong about there being specialists in Wales . . You need to go through Community Mental Health, which is where you are going, which is good. They may be able to assess you there, otherwise you might have to go out of area. . .looking at a map, you're not too far from the border with England, but how you'd manage to get funding, I don't know.
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Post by advertisethis346 on Oct 23, 2016 19:48:19 GMT
Thank you! I think there may be one or two in Bridge End, but thanks to the transport in Wales, London would be quicker to get to! There are a few based in Chesire so I might start there. The funding aspect is something I don't understand very well. I've heard people saying I basically have to convince them that I need the funding more than someone else, which sounds pretty awful. It's great to hear I'm at least on the right track though Hopefully when I know more I can report back so others in this area will know what to expect.
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Post by vagueandrandom on Oct 23, 2016 21:56:44 GMT
There's a Facebook page for ADHD North Wales which might be useful for you to contact. .
put it in a search on FB . .
I was thinking Chester/Cheshire or Liverpool if you decide to go to England. .
I'm currently making a complaint to my CCG because they say I need to be
clinically exceptional, but because they don't have any specialist ADHD provision
I'm arguing that I don't need to show exceptionality because they have no provision. .
I'm probably getting ahead of myself right now because your CMHT may be able to provide
what you need . .and that would be great. . .
Find and utilise any resources which might be helpful. . I and others can help. .
Good luck
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Post by advertisethis346 on Oct 24, 2016 6:05:05 GMT
This might sound like paranoia, but I'm a little hesitant to join a Facebook group for ADHD and potentially open up a can of worms with friends and family. I've told one or two people, but there's so much misinformation out there, I want to try and control the conversation as much as I can. On the other hand, I am very serious about pursuing this so I'll definitely think it over.
With your situation, I'd say they have made you de facto clinically exceptional by not having the resources you need. By not having those resources, they are implying that anyone who did need them would be an exception almost by definition. What I'm getting at here is, maybe ADHD isn't "clinically exceptional" in the grand scheme of things, but relative to the resources your area has, it is. I'm really new at this though, I have no idea how that would go down. I imagine I have a lot to learn.
As for my situation, don't worry, I seem to be an expert at getting ahead of myself too. I'm going to approach the CMHT with as much enthusiasm as I can and take any and all help they offer. But if they don't have the resources, I'm reasonably confident I can make a case that this has had a pretty major impact on my life and I don't feel like I can deal with it on my own. There's always a chance that I'm completely wrong, but there's ever-growing list of ADHD-like symptoms in my notebook, going back to when I was very young, that I'd have no explanation for if that's the case.
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Post by advertisethis346 on Oct 24, 2016 9:54:00 GMT
Sorry, quick update - just got off the phone with the Link Care Worker. He seemed like a really decent guy but he said a couple of things that made my heart sink. He said that adult ADHD isn't usually a problem and that medication isn't offered, or isn't effective. He mentioned they don't have a licence for it with adults, not sure exactly what he meant by that. Possibly that the CMHT aren't able to prescribe it. I'm not saying I definitely need it, but after hearing so many people say it has improved their lives significantly I don't like the idea that it's being ruled out before we even start. The fact that he said it isn't usually an issue in adults didn't exactly fill me full of confidence either.
I'm not giving up, like I say he seemed pretty open-minded and didn't say anything unequivocally. I'm just wondering how many people I'm going to have to see before someone even admits this is a problem, let alone knows what to look for. And how am I supposed to even get to those people, if I can't convince someone to take it seriously in the first place?
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Post by vagueandrandom on Oct 24, 2016 10:59:18 GMT
advertisethis346 the care worker is talking b******s about ADHD not being a problem for adults. Here's some recently published NHS research which notes that adults with ADHD are more often out of work and accessing MH services. . . NHS . . .and this programme on Radio 5 Live (first and last half hours) BBC5and there's an article in the General board "When Adult ADHD Goes Untreated" Do your research and print out a load of stuff backed up by evidence how your life has been negatively impacted. Don't forget the NICE Guidelines. . .which recommend medication as the first-line treatment for adults. . . Which brings me nicely to medication. . . . the care worker is right that most medication is unlicensed for adults, although it's licensed for children and methylphenidate (mph. .ritalin and concerta) is recommended in the NICE Guidelines for adults. . . NICE also recommends that medication should only be prescribed and monitored by a specialist and diagnosis (dx) should only be by a specialist. . . Just having ADHD has turned me into a campaigner and self-educated expert. . I didn't want it, I just wanted to live my life better and I've just bought another 3 books. . .I know more about ADHD than my GP and the last Consultant Psych I saw. . . Perhaps you could create an anonymous FB account. . .
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Post by advertisethis346 on Oct 24, 2016 12:10:53 GMT
Hopefully you managed to read the books too That's something I struggle with a lot. That's a great suggestion about the Facebook account, I think I'll go ahead and do that. I really appreciate that info as well - I've been devouring everything I can find on ADHD I can find (think my family might be a little bored of hearing about it by now), but much of it is American and I've noticed anything concerning ADHD originating from North America gets instantly dismissed by people in this country, even from highly knowledgeable people like Dr Russell Barkley who literally wrote the book on ADHD. It's great to have some info from British sources, especially the NICE guidelines. I really don't mean to denigrate my Link Care Worker, he sounded genuinely concerned and made it clear he wouldn't be diagnosing me himself, only providing information to the consultant, but the more aware I am going into our appointment of what the process is the easier it will be, for him and for me. Theoretically at least. That's in three weeks time though, I have a feeling it might be substantially longer before I see a specialist. Thanks again
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Post by vagueandrandom on Oct 24, 2016 12:11:40 GMT
You might also like to watch 'How to ADHD' videos on YouTube
and there's currently a twitter discussion about ADHD services by Rob Baskind @robbask
who runs the adult ADHD service in Leeds
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Post by vagueandrandom on Oct 24, 2016 12:19:08 GMT
Also for more UK info look on UKAAN's website. ukaanIt's a professional organisation for ADHD practitioners, so can't give individual help, but it's a source that might be taken seriously by UK medical practitioners.
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Post by advertisethis346 on Oct 24, 2016 16:39:33 GMT
Thank you so much for this! I wish I had more good news. I hope things are going better for you with seeing a specialist
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Post by vagueandrandom on Oct 24, 2016 17:15:48 GMT
That's OK. .
If my complaint to the CCG results in funding to see a specialist, I'll still be on a waiting list.
I've ended up going private, which is really expensive, but worth it to try different meds.
I still intend to fight for NHS treatment for the future.
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Post by advertisethis346 on Oct 24, 2016 22:00:19 GMT
I'm seriously considering it myself. There's a private specialist really close to where I live. I can't exactly afford it but then, I feel like I've wasted so much of my life already (nearly 30). I feel like if someone said "okay, I've made you an appointment with a specialist, it's going to be 6 months" I might settle down, at least a little. But nothing anyone has said so far has given me any indication that's going to happen and after hearing that guy on Radio 5 say he was going to have to wait for twelve months...I really just don't think I can do that. I can't really think about anything else, struggling to sleep even more than usual. I feel like to a lot of people it would seem like I'm over-reacting, but I really can't help it. I can't even say "sorry, my inability to cope with stress is a symptom of my ADHD", because I can't even say for sure that I have it until I see someone about it. And part of me thinks, I've paid my taxes every year and haven't asked for so much as a flu jab. This is the first time I've asked for help in all this time, and they're treating me like I'm looking for a hand-out. Kind of hard not to feel a tad bitter. Phew. Rant over.
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Post by vagueandrandom on Oct 24, 2016 23:55:38 GMT
The problem with being assessed privately is that, if you decide to try meds,
they're really expensive on private prescription. Your GP is able to take over prescribing
under instructions from any specialist under a Shared Care Agreement. .which is an 'agreement'
and they have the right to disagree. Your GP may not accept a private dx and another problem I've
heard of is that the local CCG/NHS Trust will not fund the prescribing of particular meds.
My dx was on the NHS and I'm still having problems, but I asked my GP if he'd agree to
Shared Care for meds if I went private before deciding to go.
Just a thought. . I'd never considered ADHD to be a possibility until I was assessed for Autism Spectrum Disorder (ASD)
They're quite closely related and ASD is better understood and funded than ADHD and they include
ADHD in the assessment as they're both neurodevelopmental and there's a lot of crossover.
Do you think that you might have some autistic traits? I ended up scoring highly, but just short of
a stand alone dx. If you think you might have ASD traits, you could see if you could be assessed for it.
They can't confirm dx of ADHD in an ASD assessment, but they can say that you fall into diagnosable criteria
which you might want to follow up and would carry weight with your GP and CMHT.
Once you recognise that you probably have ADHD it's really common to become obsessed with getting it dx
because you need to know for certain, so you can get on with your life.
Oh look. . .it's 1am again. .better go to bed. .
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Post by advertisethis346 on Oct 25, 2016 6:53:17 GMT
I did look into ASD as a possibility, I took this test and I found there were a few questions that described me perfectly, like "I frequently get so strongly absorbed in one thing that I lose sight of other things." and " When I talk, it isn’t always easy for others to get a word in edgewise." but other things that really are just the opposite of me like "I am fascinated by dates." - I find it really hard to remember birthdays, appointments and so on. Some were true, but in a strange way like "I know how to tell if someone listening to me is getting bored." - I do, but I frequently carry on talking anyway, or become so engrossed in what I'm saying I don't really think to check. My best friend once said to me "have you ever noticed that sometimes we'll be having a conversation for 15 minutes and you'll be talking the whole time, but I won't have said more than two words?" (he found it funny, he wasn't having a go at me). Also the emotional empathy questions don't match up at all for me. I sometimes say something I shouldn't, but I always know why it was wrong and instantly regret it. I'm usually the one in my family/group of friends that helps everyone understand why someone was acting badly and if someone is having relationship problems, I'm pretty good at helping them understand their partner's side of the argument. I put it down to a life of doing the wrong thing despite having the best intentions most of the time. Helps me understand when others mean well, even if they don't always show it. My current plan (which changes about three times a day) is to go to my appointment with my Link Care Worker with the list of symptoms from the NHS website and the NICE guidelines for treating adult ADHD, make a case for why this is having a serious effect on my life (been unemployed for ~18 months, lost or quit every job I've ever had either due to being late too often or becoming bored to the point I couldn't face going in to work, failed my degree because I couldn't figure out how to start my dissertation, big problems with sleeping, relationship issues and so on so hopefully it should be too hard) then tell him that according to NICE I need to see someone who knows about ADHD to be diagnosed and is there anyone in this area. If there isn't, how do I go outside the area for treatment. I'll agree to do whatever other tests he wants if he thinks it will help rule things out, but I won't accept any diagnosis which doesn't include the things I have the biggest issues with. And I definitely won't accept that there's just "nothing they can do" which is what they seem to be implying so far Fun, right?
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Post by vagueandrandom on Oct 25, 2016 11:04:28 GMT
Sounds like a good plan advertisethis346 It's all fun and games! One of the many good things about ADHD is that if we think that something's important, we won't let it go! And we hate injustice. I'm like that with the talking. .I've been looking at my ASD report which is surprising . .in the communication section . .there were no 'abnormalities in pitch, stress, rate, rhythm and intonation of speech' I must have been on best behaviour and I'm better 1 - 1 because I rattle along at a million miles an hour. . then stop. .and possibly talk really slowly while I try to work out where it was going, or the word that vanished. . I was Clinical or borderline clinical in 6 out of 8 criteria. .the other 2 were my mum's observations. . . Empathy's a strange one . . I'm super empathetic and can judge people's moods and I'm also good at identifying other people's relationship problems. .however. . I'm clueless when the emotions are directed at me. .I don't know how other people see me and can't tell if they like me or not. I don't have any close friends and don't really understand why. .I haven't had a serious relationship for over 20 years. . I'm incredibly social and know loads of people who are always pleased to see me and I'm fun at a party. . .but scarily intense and have developed the appearance of independence and having loads of friends and things to do. .I've been pretending to be 'normal' and covering up the truth for so long, I even minimised my difficulties with my specialist. . I need to unlearn habits, be honest with myself and learn healthier habits . .sorry, I'm hijacking your thread. . .there was a point to this. . Oh yes! Please stick with it. . I wish I'd been diagnosed in my 20s as there would have been time to undo my now ingrained bad coping strategies and actually understand and accept who I am.
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Post by advertisethis346 on Oct 25, 2016 14:36:58 GMT
Yeah I really don't let things go if they're important, ever. According to my parents, they've learned it's easier just to do what I'm saying than try and argue...which makes me sound super spoiled, but I really don't do it very often. Speaking of! I got in touch with a private specialist and it's way cheaper than I thought so I think I'm going to go with that (told you the plan changes a lot). One weird plot twist, which I can't decide if it's good or bad - he can't actually prescribe me medication due to some weird policy in this area, so I have to ask my doctor for a letter of referral. Apparently since I've already been referred to the CMHT, I can just ask him to send that referral to the private psychiatrist saying he's happy for him to take over and then prescribe what he suggests if necessary. So I theoretically wouldn't have to pay if I did need meds? It sounds a little too good to be true...worried the GP might dig his heels in, or the trust may not allow it. Supposedly though it's pretty straight forward, especially since he already referred me once. I can't do that till the end of the month though. One thing the people I know in healthcare tell me is never minimize your suffering. It's a stupid system, but if you don't act like things are at least as bad as they are they won't read between the lines. There is no real Dr. House (if you know that show). It's pretty much just the relatively clueless doctors that House comes in and says "you idiots, this would have killed them!". There's a few brilliant ones out there, but they charge an awful lot, or live in Cuba. I don't know about you, but one big problem I have with friends is being the one to make plans or invite people places. I generally always turn up when I get invited, but apparently reciprocity is this whole big thing. Also I tend to hedge my bets with plans a lot, and occasionally I end up cancelling on someone because I thought I could fit in three meet-ups in one day, but the first one over-ran...until 4am. Sorry it took you so long to get treated It seems like awareness has been pretty low until relatively recently, especially when it comes to adults - I know one person who has it, but was just hung-out to dry when they turned 18. If I get diagnosed the first thing I'm doing is telling them they should consider getting help, because they're having a lot of the same problems I am. Really don't worry about hijacking anything - this thread is on an ADHD support forum, I'd be the biggest hypocrite in the world if I was mad at anyone for veering of topic. I'm just glad to find I'm not the only person like me!
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Post by vagueandrandom on Oct 25, 2016 23:59:29 GMT
Quickly, before I turn into a pumpkin. .
Yeah . .inviting/arranging involves making decisions. .and I have enough of a problem
deciding what I might eat. ..or wear . .it's best left to people who can do these things . .
I've stayed with boyfriends I didn't really like in the past because they would decide
what we were doing/eating/seeing. .
and I don't like using the phone. .
You might get lucky with getting referred privately from your NHS provider. .it's a possibility
if you can get it funded and your GP agrees to Shared care. .
1am again! . .meant to have an early night. .
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Post by vagueandrandom on Oct 26, 2016 22:56:22 GMT
It could be that your local Trust/CCG commissions specialist ADHD service from
the private sector. . . For assessment/dx in my adjacent area I know that the CCG
funds for private assessment/dx, but not treatment or follow-up . .so it might not
be too difficult. .. it's still a f***ing nightmare trying to navigate the system. .
I'm hoping that it's not going to be such a trial in your case. .
All the best xx
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Post by advertisethis346 on Oct 27, 2016 15:13:03 GMT
Sorry, I was putting off replying until I knew what was happening, but I still don't. I asked for a referral Tuesday, the doctor I saw is on holiday till Monday, but the secretary said they should be able to get another doctor do it by the end of the day and they would call me when it was done. They nev er called, so I rang up and they told me she had gone home, but to call back the next morning to see how things are going. I called them next morning, I was told the woman I spoke to the day before was now on leave and they had nothing to tell them what was happening, but the secretary who was in would handle it. I asked if it was possible to talk to the new secretary to make sure she knew what was happening, but they said no. I just called up again and apparently that secretary had gone home and the receptionist had no idea what was happening, other than it was "with the doctors" and her screen wouldn't tell her any more than that (y'know that Little Britain sketch "computer says no"? it was exactly like that). They couldn't even tell me which doctor it was currently with (meaning she could have just given it to the doctor I initially saw who isn't even till next week). Her only advice was "try again on Monday" - so she can't tell me anything, but she obviously knows its unlikely to get done this week.So then I called up the secretary of the psychiatrist I'm trying to be referred to, just to ask what his availability is like and she explained that before even seeing me he has to read the referral to decide if I'm the right person for him to see. Meaning my clueless doctor who knew nothing about ADHD gets to decide if I even get to see a private specialist. What kind of a messed up system is that? Meanwhile I'm supposed to be starting a job at the other end of the country in a couple of weeks and I'm trying to get an appointment before I leave. I'm starting to think maybe I should have just waited to see a GP in England, where they might have some idea what's going on.I've just looked it up and apparently I don't need to be referred to seek private treatment so it's just the preference of this particular specialist. Kind of reassuring that it doesn't exclude me from getting it entirely, if my GP won't help.
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Post by vagueandrandom on Oct 27, 2016 17:25:45 GMT
You're right, you don't need to be referred to see a specialist privately, but
it might help you later on if you decide to take meds and want NHS prescriptions.
If you're moving for work it might be worth looking at the state of provision there
and if it's better, wait until you move.
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