fardale
Member's not posted much yet
Posts: 37
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Post by fardale on Jan 30, 2017 13:58:44 GMT
I contacted my local MP about the lack of ADHD help in worcestershire (hi i'm new by the way) and i got a pretty scary response back(WITHIN AN HOUR!!) saying he'd like to meet me. I'm anxious to the hilt about this and does anyone have any advice or thoughts on this?! ANYTHING will be helpful. does anyone want me to convey any particular messages about their ADHD experiences? I will try my best :3 my mind is on full tilt right now.
Any response will be appreciated. even if its just "good luck"..... *psst* heeeelp
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Post by Busy bee š on Mar 22, 2017 9:31:01 GMT
How did you get on?
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fardale
Member's not posted much yet
Posts: 37
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Post by fardale on Mar 23, 2017 19:51:30 GMT
pretty well. pretty sucky. Lots talked about. lot of concern from MP. he's chased it up. got quite a few letters regarding it. all essentially saying. it will happen. but not any time soon. Money. MP was great about it though. tried to get me an out of area referral. still no.
I've gone private since. booked and diagnosed in the same week. Still trying to get started on treatment though :/
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Post by Wavey75 on Mar 31, 2017 17:45:36 GMT
I'm not sure if this helps or not, but before I got my diagnosis I had thought I had something called APD (auditory Processing Disorder). I spoke with my GP and asked to be referred to a specialist and there was no one in my area.
After some googling and speaking with an APD support group, I found out the 2 places to be diagnosed were somewhere in Sheffield and UCLH hospital in London. If your NHS trust do not offer a treatment, then you have the right to be treated where it is available.
So, I called up the UCLH hospital, spoke to them and asked what to do, and they said just get your GP to write to us asking for a referral and we can then offer you an appointment for assessment.
I did and my GP did and that was that. I even got my travel reimbursed (which was nice as I live in Torquay, Devon).
Basically what I'm saying is, if your NHS does not offer treatment you need, it is your right to choose. Find your nearest ADHD clinic (or maybe the 2nd nearest may have a shorter waiting list) contact them, ask what you need to do to be referred and take it from there.
It turned out that I did not have APD, but I did in fact have ADHD. I explained to my GP that I fit almost all of the symptoms listed on the NHS website and I had done an online self assessment and it scored me as highly likely (or something like that) and my GP at first tried to say that it might not be ADHD for me and my reply was "Thank you for your opinion, however as it is my right to choose, please write a referral letter for me to this clinic for peace of mind and to rule it out altogether".
there was no argument and he gave up trying to talk me out of it. I was referred and diagnosed with ADHD and some other conditions.
Good luck with it!
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Post by vagueandrandom on Apr 1, 2017 6:29:31 GMT
Hi Wavey75 Although you have the right to choose a service which isn't offered in your area, the CCG still has to agree to fund out of area treatment. I've come up against the CCG refusing point blank to fund any treatment for ADHD unless 'clinically exceptional' ie. need is greater than anyone else with the same condition, who also would not get treatment as the CCG "doesn't routinely commission an ADHD service" I've gone through the complaints procedure, am taking it to the ombudsman, have writen to my MP, Healthwatch and Mind . . .
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Post by Wavey75 on Apr 6, 2017 10:14:52 GMT
I had three instances where my local authority did not offer treatment.
For APD, I argued that it was not treatment, but that it was for diagnosis. Once confirmed, treatment can be offered locally in my area.
For 2 other occurrences, one was for bariatric surgery where the local authority discussed my case before a panel and I was granted the funds for treatment.
For my ADHD diagnosis, it was for diagnosis & treatment from a neighbouring trust, but the name of the clinic was for my whole country and when I asked for my referral, I would of argued that as this is for all trusts in the county, it would be unfair to discriminate based on my location.
If you are denied funds for out of area treatment, they must provide reasons why, which you are entitled to challenge. It's all part of the NHS constitution.
Wavey75
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Post by vagueandrandom on Apr 7, 2017 9:35:56 GMT
I know all of this Wavey75 and your experience is what *should* happen. There is an adult ADHD service in the neighbouring NHS area, which also says on it's website that it covers my area. I have brought this up with the CCG, but they're just a stuck record on this . .the reason for every argument is that they don't fund ADHD unless clinically exceptional. They won't tell me what conditions need to be demonstrated to prove this, only that things like 'lifestyle' aren't taken into account ie. the fact that I'm unemployed, socially isolated and lack of support is detrimental to my MH. . (Depression isn't a clinically exceptional reason because I can get local treatment for it) When I asked why they seem to be ignoring NICE Quality Standard and Clinical Guidelines they said that the funding panel considers all available evidence, standards and guidance. . This has been going on for a year! I've started a local support group and the story's the same for us all! Some can't get assessment, others go privately, one has had meds stopped by GP . . It's ridiculous and Kafkaesque . .
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Post by Wavey75 on Apr 8, 2017 8:52:45 GMT
Did you contact the ADHD clinic directly and ask how you can get referred to them for assessment? I'd be interested in hearing what their answer is. If they are not referring you, they are bound by the NHS constitution to give you a full and clear explanation as to why.
what is going on now, you said it's been going on for a year, but what is happening now, e.g. is it in a queue of cases waiting to be heard in front of a panel or something, etc.
Another way is to go and see another doctor from another surgery for a second opinion.
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Post by vagueandrandom on Apr 8, 2017 19:18:23 GMT
Hi Wavey75 Yes, I called the neighbouring service to see if I could get my GP to refer me direct, but they said it it would need to be approved out of area from my CCG. I also contacted PALS at my local NHS Foundation Trust (MH) asking how I might get some help for my ADHD . .they confirmed that they don't have a service and recommended I get my GP to request funding to go out of area . . . My request has been in front of the panel at least 3 times and has been turned down each time. I have made 2 official complaints via an advocacy service asking why Clinical Exceptionality needs to be proved if they don't provide a service. . .answer . .they don't commission a service for anyone with ADHD. . .why they don't automatically refer to the service 50 miles away? . . answer . .they don't routinely commission treatment for ADHD unless clinically exceptional . . Why are they seemingly dismissing NICE Clinical Guidelines and Quality Standards? . . answer . .the panel considers all available evidence, standards and guidelines. . As they don't seem to be able to answer my questions, I have now submitted a complaint to the Parliamentary and Health Service Ombudsman, written to my MP, Healthwatch, contacted my city counsellor who sits on the health scrutiny board, have the support of the CEO of my local Mind charity and the Clinical leads of the service I want to be referred to and another which is also within travelling distance (both of whom are involved with UKAAN) I have a very supportive and frustrated GP who wants me to get referred, so getting a second opinion isn't necessary. I have letters from ADHD consultants, one NHS and one private, who confirm my dx and recommended specialist treatment, both within the last 2 years . . Specialist recommendation is not considered to prove clinical exceptionality. .apparently . . Sorry to bang on about this. . . I know what the NHS constitution says and have become quite the expert in the ways of the NHS and CCGs. . I seem to have moved to the worst place in England to have ADHD . .I've had loads of advice and support from people who know how the system works. At the end of the day, I'm not a clinically exceptional case, I know that and don't want special treatment because I've caused a fuss. . I want the CCG to recognise that ADHD is real and all cases deserve treatment and support. They can't get away with denying treatment without explaining why.
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Post by Wavey75 on Apr 9, 2017 19:01:26 GMT
I feel for you, I really, really do.
From your writing, I can clearly see your frustration with these red tape-loving, bureaucrats and their "jobsworth' attitude.
I had previously assumed the obstacle was with your GP, as is most often the case, but not in yours.
Your situation is, in a word Atrocious. What a nightmare this must be for you, I'm truly sorry and I realise how lucky I have been.
There's absolutely nothing I can say, no magic solution, no hidden answer, you've covered everything.
My only offer would be to get as many people together as you can with protest banners, call the local papers and the radio stations the day before your protest, and cause a massive scene, preferably when there's a visit to your trust's office from some decision maker, like an MP, or something to bring your story into the light, so you can get interviewed and say you have been diagnosed, you need treatment, but your own NHS has decided that because you're not an exception, you don't qualify for the minimum standard of quality of life, it's disgusting and they should be embarrassed into realising it, especially when other NHS trusts are giving out f*%king tit jobs to coke addicts who sell their story to the highest tabloid (sorry for my language but I'm f*&king furious at this for you).
Please do keep this thread up to date for me and anyone else who's in your area or having similar issues.
Perhaps some kind of list or flow chart to list the steps you took and their outcome (in brief) so everyone in your NHS trust's area will know what will happen next for them too.
It's beyond "so frustrating" I really do hope to take them to the cleaners in court,because they're total arseholes for letting it get this far.
Good luck with it and I genuinely hope it works out for you soon!
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Post by vagueandrandom on Apr 9, 2017 22:54:39 GMT
Thanks Wavey75 . . Hull CCG is wrong on so many levels and I'll keep shouting about it. I'm in touch with a few people who are trying to get a national campaign going for equality of access to ADHD support and know at least 2 other adults with ADHD who are going through similar struggles locally who will speak up publicly. . and if there's anyone else in the same position, I'd like you to contact me to compare notes and make noise . .it's supposed to be a NATIONAL Health Service with equal access to treatment. I know I'm bolshie, but never imagined I'd get so involved in campaigning . . Getting my ADHD dx was the best thing that ever happened to me as it explained so much. . getting access to support should be easy. . and I must thank voluntary support groups and this forum for their help, there really shouldn't be a need, but have given me hope and support and I'm thankful to you all . . I'll update anything as it comes up.
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Lame44
Member posts quite a bit
Posts: 207
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Post by Lame44 on Jun 30, 2017 15:38:37 GMT
Has anyone heard anything else about things in Worcs? I only ask because I had to come of my MPH for a while when I had polycythemia and then started back on it and then the psych resigned before I could see him again to put it back up tot he normal dosage I was on before and now no-one can seem to prescribe me the right dose because there's no Adult ADHD service here. I wondered if something might be in the pipeline. It's awful getting diagnosed with something and getting treatment by these lot in Worcs but then them leaving you hanging on with half a dose. My GP wont up it unless a psych writes but the psych said no, I can't do that now there's no services for adults with ADHD.
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Deleted
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Post by Deleted on Jul 4, 2017 12:17:45 GMT
What exactly does clinically exceptional mean? Is that code for something? Like commercially viable?
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Post by vagueandrandom on Jul 4, 2017 14:14:14 GMT
@boost . .yeah . .my GP would like to know that too . .
they only tell you what isn't clinically exceptional, but not what would be . .
I think it's deliberately so vague so they can turn down everyone
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fardale
Member's not posted much yet
Posts: 37
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Post by fardale on Jul 4, 2017 19:26:44 GMT
Has anyone heard anything else about things in Worcs? I only ask because I had to come of my MPH for a while when I had polycythemia and then started back on it and then the psych resigned before I could see him again to put it back up tot he normal dosage I was on before and now no-one can seem to prescribe me the right dose because there's no Adult ADHD service here. I wondered if something might be in the pipeline. It's awful getting diagnosed with something and getting treatment by these lot in Worcs but then them leaving you hanging on with half a dose. My GP wont up it unless a psych writes but the psych said no, I can't do that now there's no services for adults with ADHD. Been keeping in touch with robin walker our mp. the short answer is no. the long answer is even more no. lack of funding and no1 seems to care in worcester. went private and started concerta xl. am on 45mg for work and 27mg on weekends. its nice feeling like an adult for a change. trying to get gp to prescribe meds my adhd doctor has given the ok to. its a nightmare in its own right.
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Deleted
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Post by Deleted on Jul 5, 2017 17:52:24 GMT
Rightly or wrongly, I read this as "We've found a get-out clause in your personal circumstances so will you fuck off, please?" Can you summarise your personal blurb here and perhaps one of us can spot what it might be, if that helps you? Prolly all stuff you've mentioned on here before but things like your: Age Family history Number of dependents Clinical history What your job is or used to be Anything Everything Who knows? I also found this, not sure if it helps? publicregulatoryblog.fieldfisher.com/2016/nice-recommendations-what-are-exceptional-circumstances/If they give you a pound, they want three pounds back? We don't care how bad your life is, this is a loan, not a grant? Judge: Stop fking around and order the drugs already? I've no idea what type of court this was but it seemed to have some clout? Hope some of this helps!
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Post by vagueandrandom on Jul 11, 2017 10:49:39 GMT
Thanks @boost It's bloody ridiculous! You asked for a summary. . . Age: 50 Single, never married, no kids (prob due to ADHD - not being good in relationships) Dad probably ADHD. Clinical history: dx I have been given: chronic depression, possible bipolar, possible personality disorder, dissociative disorder, depersonalisation, emotional instability, anxiety, separation anxiety etc. . . years on antidepressants and lithium with no lasting recovery. dx ADHD with significant autistic traits 2 years ago just before moving to this CCG area and not getting any help. Went private, confirmed dx, tried stims, but didn't respond well. Consultant recommended adapted CBT or coaching, which is available in the neighbouring CCG area. . .hence IFR to go out of area. Jobs (irrelevant to CCG as it's not Clinical) Lots of unskilled jobs, despite having an MA . . currently working 10 hours a week in a gallery. Was long-term unemployed when first applied (18 months) Only CLINICAL reasons are considered, so letters from 2 consultants recommending further specialist treatment don't count, neither does social isolation, un/underemployment, the fact that my ADHD being unsupported is detrimental to my mental health (that's ok, because they have treatment for depression locally) Pfff!! . .having ADHD in itself doesn't qualify for treatment out of area because they treat people 'with a dx of ADHD' within the local secondary MH service (BUT NOT FOR ADHD) . . .it's like saying they treat people 'with a dx of diabetes' in the MH service. . . The CCG has lied to the ombudsman and the ombudsman hasn't investigated independently their claims that they provide limited services . .that's the line I'm going to take when I challenge their decision.
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