|
Post by jan on Jul 15, 2013 11:15:12 GMT
all jokes aside (though am completely serious about the above though not sure the others would have the time )
what about if you send me details to get in touch with them and i'l e mail them and make out like i'm someone important (like planet dave ) from the site and politely tell them that if they don't get their asses in gear and sort this prompto (obviously not in those words but in polite jist of them ) that I will be pm ing everyone of our members in our adhd community ( over 2000) and advising them to spread the word to others not to ever use this service !!!
|
|
Deleted
Deleted Member
Posts: 0
|
Post by Deleted on Jul 15, 2013 11:48:33 GMT
Did you manage to verify the credentials of the person you saw over t'internet?
|
|
|
Post by Kathymel on Jul 15, 2013 13:10:13 GMT
Well the letter did the trick and I got a reply!
Not that it helps actually. I'll just copy and paste:
Firstly to say I am sorry for the delay.
I have had the opportunity to speak with your GP Dr Marshall and also contacted Dr Roberts, the Consultant Psychiatrist to discuss his impressions.
Your GP has indicated that she is unable to commence prescription even with Specialist advice from myself. I am usually in the position of advising GPs to prescribe which ensures good communication and awareness when providing Consultation.
Dr Roberts has indicated that though he sometimes agrees to carry on medication started when young people are diagnosed with ADHD, he is not in the position to make this diagnosis in adults.
Unfortunately it is the case that though NICE provides guidelines in many areas, they remain guidelines and can be simply ignored by local commisioners if they see fit. I have come across examples of this in my NHS work recently in Bristol, which I am still surprised by. It is not specific to rural areas.
The online prescribing partner I have contacted to help with this are clear that they can supply most medications, but controlled drugs, such as medication for ADHD will still require a paper prescription.
Private prescribers can obtain this registration via what used to be the local Primary Care Trusts. However, PCTs were abolished earlier this year by the current government, and this duty has transferred to the new Clinical Commisioning Groups who I have been in touch with, but the registration process would appear to be quite a lenghty process, and I am not able to say when I might be in the position to prescribe.
In the report I have been clear that a positive response to medication would confirm the diagnosis. Generally the diagnosis of ADHD is not helpful without a clear plan for intervention. I wonder if it would be heplful for me to write something specific for the University? Given the difficulties you experience with organisation and completing your work, it would still suggest that you would benefit from support, irrespective of diagnosis. And I think this is an important factor. If this diagnosis and medication are the enitre focus for you at present, this is probably unhelpful in advance of us being clear that medication will even be effective for you.
Please don't feel that I have interpreted your communications as anything other than request for information. I have to admit however being slightly frustrated with the process myself, so it has been difficult to write back and say I am confident in resolving this issue.
I hope at least letting you know that I have been trying to resolve this will be helpful, even if I am not much further on in the process.
Please let me know if a summary letter for your university might be helpful. This would be a short descriptive account of your difficulities without reference to ADHD/ADD.
So. No idea when I will get a prescription.
It is interesting that he has talked to Dr Roberts (the psych who overrode the promise of referral) and got that response. Maybe it obviates the need for me to have a meeting with him before I go to appeal.
I am 100% sure that uni will not do anything without a definite label as it is needed to get the DSA without which there is no funding for the Assessment of Needs.
|
|
|
Post by JJ on Jul 15, 2013 13:33:42 GMT
As an initial response I would def mail the psych straight back and say thanks etc but I'm just a little unclear about what you said about needing a response to medication as it says on bap.org's info that response to medication or not has no bearing on whether adhd is present or not (remember they advise NICE and the same man Asherton or whoever sits on both), I'd also say (v politely and a bit confused) that if everyone responded to meds then you don't understand why there are 3 meds recommended by nice.
You're really dealing with a bunch of fuckers - I'm so angry for you...
I'd pm Annie for her advice at this stage as well...
Xxxxxxxxxxxxx
|
|
|
Post by JJ on Jul 15, 2013 13:37:05 GMT
Somewhere on this site (main and in the forum by pdave or Annie I think) it says something about 5 years to do something about the guidelines and they came out in 2008 if I remember.... Might be nothing but brain going round for help for you
|
|
|
Post by Kathymel on Jul 15, 2013 13:54:16 GMT
Thanks, JJ. Just taking a break (OK, just getting distracted) from writing to him now. I have mentioned that I found his line about the meds proving the diagnosis to be unsettling, given the knowledge I have gained from people on here not responding to MPH, but finding other meds to be a breakthrough. I'll visit Bap and re-fettle it to include the guidelines, too. Have had lovely chat with S. Ex. He's going to compile a list of ways in which my disordered brain has impacted him and Genghis. That's got to be something Dr Roberts must take into account. Oh, I wish I was still ignoring this! It was much less stressful.
|
|
|
Post by JJ on Jul 15, 2013 14:03:23 GMT
Fab idea re the s. ex letter....
Sending you strength xxxxx
|
|
|
Post by Kathymel on Jul 15, 2013 15:38:08 GMT
I've done it! I wrote back. It took me 5 bloody hours and I'm knackered (and there's no wine in the house with which to celebrate), but I did it and I was really, really brave and questioned all the things he had written in his report that I had been unhappy with. PHEW! I quoted BAP, told him things I'd remembered since our consultation (but hadn't wanted to bother him with) and explained that my moderate social anxiety was not separate from the ADHD (as he'd thought), but as a result of it. Feeling a bit post-brave, now. Right then. Jan, I'm an activist through and through, but is Bristol the place to camp? I thought they were one of the few places to have a relatively open attitude to ADHD outside London. I may be behind on recent events, though. And, Jan, you don't have to pretend you're important! You're a Senior God on an ADD forum!
|
|
|
Post by JJ on Jul 15, 2013 19:12:26 GMT
Well done you !!!! You def need wine I can come on a demonstration / protest camp btw - we've got a tent as well - my 14 yr old can bring his guitar to keep us entertained at night - though he's v rule-bound so will need some sort of mask .
|
|
|
Post by jan on Jul 15, 2013 20:21:34 GMT
Right then. Jan, I'm an activist through and through, but is Bristol the place to camp? I thought they were one of the few places to have a relatively open attitude to ADHD outside London. I may be behind on recent events, though. glad your getting it together to challenge him still think you should let me or someone else e mail him not that you would ever promote him on here ever anyway said Bristol cos that's where you said his office is based uni won't do anything without a dx I don't think - my daughters fe college said they couldn't when I first started getting help put in place for her,
|
|
|
Post by Kathymel on Jul 15, 2013 22:39:45 GMT
Yeah, they are in Bristol but no idea where. Perhaps we should just go camping somewhere nice and say fuck the activism just this once. I've got a tent, too. Went and bought wine, by the way. xXx
|
|
|
Post by fuzzywuzzy on Jul 15, 2013 23:02:03 GMT
So impressed with you....well done! now....I don't have a tent, but I like looking at the stars....and it's blimmin hot anyway.....can bring wine, never been to Bristol and big kid at heart....do I qualify? Only problem is I might be following Jan's directions!?
|
|
|
Post by Kathymel on Jul 15, 2013 23:05:43 GMT
I have a spare tent and plenty of room in 1st tent. Do lets go camping somewhere away from stressful things! We could burn marshmallows and lie on blankets and look at stars.
|
|
Deleted
Deleted Member
Posts: 0
|
Post by Deleted on Jul 15, 2013 23:16:54 GMT
That all sounds quite promising? It's a real psych at least
|
|
|
Post by Kathymel on Jul 15, 2013 23:21:24 GMT
Bollocks to psychiatrists. Come camping with us, Michael?
|
|
Deleted
Deleted Member
Posts: 0
|
Post by Deleted on Jul 15, 2013 23:35:04 GMT
There are no words for how much I hate putting up/taking down a tent
|
|
|
Post by Kathymel on Jul 15, 2013 23:41:14 GMT
Ooh, I bet there are.
|
|
|
Post by DKL - darkknightslover on Aug 11, 2013 9:52:31 GMT
I have mentioned that I found his line about the meds proving the diagnosis to be unsettling, given the knowledge I have gained from people on here not responding to MPH, but finding other meds to be a breakthrough. I don't think you need to be particularly worried about this. It won't be so much about getting *a* postitive response, but the sort of response that you get. Someone with ADHD will have a different response to (but may not get on well with) stimulants, to someone who isn't. At the opposite end of the dopamine spectrum you have schizophrenia where instead of not being able to tell what's important in all the stimuli you're getting, you think everything's important, which is why they tend to get agitated/overly worried. The reason why some hear voices is because when you're just thinking to yourself, your voicebox moves. Other nerves pick up these tiny movements and another part of the brain interprets these as an incoming important piece of information. Yet another part of the brain tries to make sense of it, and the only way it can do so is to label it with a "voice". To my understanding, if you have normal dopamine activities (remembering, it's not the amount produced, but how long they stick around and can act for) and they're pushed upwards, you're more likely to become agitated and anxious from all of this "hyper-awareness". If they're low, well, you become Dory the Fish or cat/dog-like in your ability to hold your attention on anything, and this helps to correct it temporarily and to some extent. However every drug in existence has side effects. Dopamine and Noradrenaline are used in many different circuits in different parts of the brain and body, and perhaps not everyone will have the same mechanism(s) that can be helped by these medications. Genetics research is showing that there are loads of different genes that go into determining if someone will end up with ADHD or not, and not all of them need to match up. These genes will translate into different proteins and pathways that could have all manner of things go wrong with them. MPH and Dex and most other drugs in a psychiatrists arsenal are sledge-hammer drugs - they hit on loads of things. Over time this will change and we'll end up with finely tuned instruments.
|
|
|
Post by jan on Aug 11, 2013 13:47:23 GMT
WOW DKL I am always so bowled over by your knowledge and ability to explain things - phenomenal (my favourite word at the moment ) I just wish I could keep this info in my head - soon as ive read it - its gone - so I have no understanding of all this at all really and couldn't have a conversation with someone about it - makes me feel well thick hows u anyway ? welcome back - I have been directing people to your posts left right and centre past few weeks have you moved? started new course/job can't remember which it was now
|
|
|
Post by DKL - darkknightslover on Aug 14, 2013 0:15:52 GMT
Aww thanks *blushes* glad some of what I've said before has been helpful. You are not thick! I've told you this before! Pfft! *tap on the head* I'm great thanks Not moved yet. Am very close to it though. Course not starting for a few weeks yet. Am getting excited by stationary. I have rediscovered the filofax - and even better is that Paperchase do their own personal organisers with the same ring binder arrangement from £10!! I have fallen in love with that shop all over again... will write more on this in an appropriate space at some point. I've been quiet mostly because I lost my phone on the bus and so I'm currently using a really old one that I can't use proboards on, and I've been trying to avoid coming on here because of all the stuff I've needed to do because I love it here so much. I've missed you all terribly though!
|
|
|
Post by JJ on Aug 14, 2013 0:42:58 GMT
Am getting excited by stationary. I have rediscovered the filofax - and even better is that Paperchase do their own personal organisers with the same ring binder arrangement from £10!! I have fallen in love with that shop all over again... will write more on this in an appropriate space at some point. Lol . I looooove stationery - staples is one of my favourite shops Derail alert . Sorry kathymel
|
|
|
Post by Kathymel on Aug 15, 2013 21:32:22 GMT
Hmmm, Staples ... pens, folders, little trays for keeping things in, novelty rubbers, pretty coloured paper ... love it. Um, anyway. I've finally started my letter to the bloody NHS psych who refused to refer me. Originally this was going to be a quick, OK, I'll see the other non-qualified guy if that's what I have to do to get through this! Unfortunately, it's turned into a five (and counting) page dissection of the report and a very detailed, symptom-by-symptom explanation of why he is wrong. Head is completely fried now. GAH!!!!! May ask people to look over it eventually as I know my language is never quite diplomatic enough for these things (although I think this one isn't bad). Only people with stamina need apply.
|
|
|
Post by JJ on Aug 16, 2013 0:46:14 GMT
Hi kathymel xx
You can send it to me for sure - without wishing to rub anything in of course, the mph has given me stamina and focus so I'm happy to look at....
Maybe if it's that long, you should write a 1 page-ish covering letter with a short outline - with numbered references to a fuller attachment...
In any case I can look at it for you..xx
|
|
|
Post by supine on Aug 16, 2013 9:28:11 GMT
phenomenal (my favourite word at the moment ) It's always been a favourite of mine Phenomenon (dun derr da dada) Phenomenon (dun dada da) Phenomenon (dun derr da dada da dada dada dadadada dun dun dada da) For some reason I also like stationary shops, all that paper and pens - endless possibilities. I also get excited in quiet libraries as well..anyone else?
|
|
|
Post by Kathymel on Aug 16, 2013 19:07:09 GMT
phenomenal (my favourite word at the moment ) It's always been a favourite of mine Phenomenon (dun derr da dada) Phenomenon (dun dada da) Phenomenon (dun derr da dada da dada dada dadadada dun dun dada da) For some reason I also like stationary shops, all that paper and pens - endless possibilities. I also get excited in quiet libraries as well..anyone else? It took way too long for that to click.
|
|
|
Post by Kathymel on Aug 16, 2013 19:08:35 GMT
Hi kathymel xx You can send it to me for sure - without wishing to rub anything in of course, the mph has given me stamina and focus so I'm happy to look at.... Maybe if it's that long, you should write a 1 page-ish covering letter with a short outline - with numbered references to a fuller attachment... In any case I can look at it for you..xx Thank you very much, JJ. Hugely appreciated. I'll give it another read through and message you with it.
|
|
|
Post by Kathymel on Sept 5, 2013 9:43:57 GMT
Finally packaged up my lengthy letter in response to the NHS psych's report and delivered it to the Mental Centre on Tuesday. It would have gone a week ago but I wanted to include some notes from S. Ex. and he was busy (I was soooo lovely and patient on the outside ). It comprised: - A 4,000 word dissection of the psych's flawed diagnostic report with an explanation of correct methods for diagnosis of Adult ADHD and a detailed account of my symptoms and where they fit in with the diagnostic criteria
- Junior school reports
- Extracts from senior school reports
- Completed Weiss Functional Impairment Rating Scale Self-Report (WFIRS-S)
- Completed Adult ADHD Evaluation Tool, DIVA 2.0
- Notes from ex on impact to family
So, just have to wait and see what happens now.
Huge thanks to JJ for her help in turning my mass of words into a professional looking document and adding all the important bits that mean they should provide a detailed and timely response. Fingers crossed!
If anyone thinks it might help with their own battle, I'm happy to email a copy of the letter to you.
In other news.
I have had a preliminary response to my complaint to the CCG that the local service provision was not up to scratch. They are supposed to investigate and respond within 30 days, so will report back when I have news.
I have not yet had a response to my email to the Welsh Health Minister. Boo!
|
|
|
Post by JJ on Sept 5, 2013 9:54:34 GMT
Have fingers crossed for you xxxx
|
|
|
Post by jan on Sept 5, 2013 10:06:35 GMT
Have fingers crossed for you xxxx ditto xxxx
|
|
|
Post by Kathymel on Sept 16, 2013 16:41:38 GMT
Got a reply to my letter to the Welsh Health Minister today, well, from an underling. Most of it was flannel about not being able to comment on individual cases (didn't ask him to) and how to complain (already have), but one paragraph is particularly interesting. You make mention of the NICE guidelines for the diagnosis and treatment of ADHD - namely the stipulation that assessment of the individual should be undertaken by a mental health specialist – and the apparent absence of specialist adult ADHD psychiatrists in north Wales. While we expect all of Wales’ Local Health Boards to take full account of NICE guidelines, the position is that treatment should be delivered according to clinical need and that all psychiatrists delivering secondary care services are mental health specialists, broadly expected to have the competencies and expertise needed to diagnose and treat common mental illnesses which would include ADHD.So there you have it. We don't need specialists because all psychiatrists are specialists. She must have missed the part of my letter where I state that my psychiatrist has admitted he CANNOT diagnose Adult ADHD. Grrrrrr!!
|
|