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Post by chaosmaker on Feb 22, 2014 21:52:24 GMT
I previously posted about the difficulties obtaining methylphenidate, particularly where I am in Northern Ireland. Complicating factors are bad experiences with NHS psychiatry before, the fact ADHD remained undetected until my mid 20s and an uncooperative family. My solution was to go private where I can choose the psychiatrist and have the bargaining power of a paying customer.
I saw a psychiatrist in the Republic of Ireland, where there is even more choice as all healthcare is insurance funded. The procedure is also simpler for the psychiatrist. The government does not need to individually authorise methylphenidate for each patient individually, unlike the UK. The whole experience was fantastic because I knew what was going on at every stage; and there were no waiting lists.
The psychiatrist had to check he was allowed to prescribe to someone with an address in Northern Ireland. He is allowed to, so long as the psychiatrist and the pharmacist are both in the Republic of Ireland. I also paid for the drug at full market cost. Prescriptions in Northern Ireland are free.
Obviously I intend to avail of that, however pharmacists in Northern Ireland say that adults on methylphenidate is unheard of here. My view is that because there is no obvious precedent, I should decide for myself how to transfer my care to the Northern Ireland NHS and let others learn from my experience.
With that in mind, my intentions are to keep everything as simple as possible which will, to an extent, come at the expense of value for money. I intend to continue with my existing psychiatrist until he finalises the the dose level and drug choice. I then intend to point out to the GP how clear everything is: I'm on a successful course of treatment, I have a diagnosis, I am a long running patient (6 months+) of the same psychiatrist, the psychiatrist has many years experience and there is little or no provision for NHS ADHD in Northern Ireland (awaiting FOI answers).
Obviously not everyone can afford private medical care. I wish I didn't need it. For the above reasons it has proved a necessary evil; and it has performed very well at that. It simplifies everything and makes care accessible; and that leaves my brain free to concentrate on things I should be concentrating on. I also commend the Irish system: the government lets doctors get on with their job. Yes, it might allow a larger black market for controlled drugs; and I see that as a small price to pay for genuine patients getting they need.
Thanks for reading ;-)
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Post by manson88 on Feb 22, 2014 22:24:45 GMT
I sent you a personal message there give me a shout back would yea?
Sent from my GT-I9300 using proboards
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Post by annie on Feb 27, 2014 8:49:47 GMT
Hi chaosmaker
Really interesting to hear your experience of services in NI. We have had others from NI come on here and like you they have found it very difficult to access services.
Great you've got yourself a positive outcome. Will be very interested to hear how you get on with regards to transferring your care from private psych to NHS. Keep us posted.
annie
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Post by chaosmaker on Mar 5, 2014 14:26:12 GMT
How to get an ADHD diagnosis in Northern Ireland:
I contacted all private providers; explained and requested methylphenidate. I gave my age, a brief background, and I asked whether they had a consultant psychiatrist capable of diagnosing ADHD and prescribing methylphenidate. I explained a prescription was subject to me paying for it, a positive assessment, and the psychiatrist considering it appropriate.
Hillsborough Private Clinic, Ulster Clinic, North West Independent Hospital, Dr Catherine Mangan and Dr Jenifer Doherty at Kingsbridge Private Hospital all said no. Some recommended Dr Richard Bunn at Kingsbridge Private Hospital.
Dr Richard Bunn ignored the same query. When pressed again, the sales staff quoted £200 and then quoted £300. They only confirmed he was capable of diagnosing ADHD; they refused to enter any discussion of medication.
I told them what I thought of them: I am uninsured, and uninsurable with a pre-existing condition. I am not prepared to spend £300 of savings if I cannot even be promised I am seeing a competent doctor. I'm not asking for controlled drugs on a plate; I'm asking whether he's capable and I've acknowledged the conditions and process - regular followups. 'Do you have a PCD1 form on your desk?' is a yes/no question his secretary should know the answer to.
There is a very bad standard of customer service and it's corroborrated in most online reviews of Kingsbridge Private Hospital.
I concluded there is one private doctor in Northern Ireland who might be an option; and that doctor is too dangerous an option.
I sent the same letter to six providers in the Republic of Ireland. Most said yes. The rest said 'sorry, no.' So a 100% acknowledgement rate is an excellent start. They were:
Dr Cian Denihan, St John of God Hospital St Patrick's University Hospital Blackrock Clinic Prof Michael Fitzgerald
All of them quoted €250-€300 for an ADHD assessment, for positive/negative diagnosis; and explicitly confirmed they were capable of prescribing methylphenidate. Three of them were GP referral only; Prof Michael Fitzgerald is self-referral or GP referral.
In other words, a Northern Ireland resident can get methylphenidate in Dublin and still be richer than had they gone to Kingsbridge Private Hospital; even after train ticket/petrol money.
I was very, very apprehensive from tough prior experiences from psychiatrists who knew plenty about medicine; just didn't know basic standards of how to communicate properly. I therefore took my business to the best communicator out of the four.
The appointment took 1h25, and after a trip to the pharmacy I got a train home with methylphenidate. For several more months I need to see the psychiatrist at €150 a time. He records all of my notes on to my NHS medical file by posting copies to my GP in Northern Ireland.
In Ireland, the psychiatrist and the pharmacy need to be on the same side of the border - that is, you can't see a psychiatrist in the Republic of Ireland, get a prescription, and have it filled in Northern Ireland.
For someone who can afford the cash, logistics and time; it's the 'least hassle' method and I would recommend it.
My focus now is having the GP agree in principle to a shared prescribing arrangement - ie see the psychiatrist every 6-12 months; and the GP once a month. An objection would be justified as methylphenidate is not as strictly controlled in the Republic of Ireland.
As I don't trust Kingsbridge Private Hospital, I can either stay with my current psychiatrist, or transfer it direct to the NHS. I intend to do that after 6-18 months on methylphenidate - keep it simple with my dosage stablised.
Unsurprisingly I will not blindly request my GP refer me to an NHS psychiatrist. I've taken a more hands on approach: I've entered Freedom of Information requests to all five NHS trusts in Northern Ireland requesting a list of 'methylphenidate competent psychiatrists', as I termed it; and the respective waiting lists. Only two have acknowledged.
Edit: the psychiatrist had to check whether she was allowed to prescribe to someone with an address in Northern Ireland; he hadn't had a cross-border patient before.
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Post by manson88 on Mar 5, 2014 15:48:10 GMT
Love your current status fella year played the game sell.
I'm currently in limbo land.
Sent from my GT-I9300 using proboards
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Post by chaosmaker on Mar 5, 2014 16:37:10 GMT
Manson: at what stage are you? Do you have a diagnosis and have you been on medication or non-drug therapies before?
I will supply my FOI info; and perhaps challenge denials of it depending on my available stamina.
Context: your last private message. I had all imaginable evidence on paper and with me, totalling estimate 60 pages. Ten years of school reports, a previous diagnosis, previous diagnosis notes, email conversations with the previous psychiatrist, his request to my GP for an interim methylphenidate prescription, a positive diagnosis for another condition frequently correllated with ADHD and a 4,500 word brainstorm about how I thought ADHD affected myself. The last psychiatrist asked me to write a page on that first and not show it to him to help me jog my memory. I kept all seven pages and they were a superb tool for the last psychiatrist.
I point out (not a reply to Manson, rather I'm merely making clear my own understanding of medicines) that standard methylphenidate is the first option only, not the only option. Patients suspected of diversion or with a history of drug abuse get for example atomoxetine or long release methylphenidate - Concerta lasts 11-14 hours. Both of these have little grey market value and the former is described to me as more like an atomic power generator than an electric heater; a patient has to take it all the time. Neither of these can be crushed and injected like standard methylphenidate.
That does not touch on non-drug therapies which I haven't investigated. I have had a lot of untrustworthy information akin to homeopathy, so I never take somebody's word for it as clearly seen in this thread. If I want to know something, I get a copy of Proceedings of the Royal Society B. Reports in recent months suggest methylphenidate can cause erections to be painful. I haven't read the paper or asked my psychiatrist how staunch it is.
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Post by petra on Mar 5, 2014 17:02:36 GMT
Hi chaosmakerTo subscribe to thread: Click on 'profile' at the top of screen Then click 'edit profile' next to 'send message' Then click 'notifications' Then click second option from the bottom, and finally 'save notification settings'. That should do it!
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Post by chaosmaker on Mar 5, 2014 17:03:31 GMT
Ta.
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meddler
Member's not posted much yet
Posts: 5
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Post by meddler on Mar 16, 2014 22:40:11 GMT
Really interesting to read this as it is exactly how I had imagined the situation in NI would be. I'm from NI as well, but fortunately for me, I happen to work in England now. I lucked upon an incredibly well-versed GP, who insisted(!) on referring me to the adult ADHD clinic (bearing in mind, my impatience led me first to a private psychiatrist who happily took my 300 quid in return for providing the priceless insight that 'People with good exam results don't have ADHD' - crikey, the woman's a genius, I hope she's submitted that manuscript to Lancet!). Anyway, around 9 months after that initial GP visit, I now have methylphenidate, which has been extremely helpful. My situation is absolutely down to luck, and I have assumed that, were I still back at home, this would absolutely not be the case. It seems to me that, in all likelihood, the NICE guidelines will be updated in the next year or two and hopefully the rest of the UK will catch up with the small pockets of expertise. I'd say for anyone at the beginning of the process perhaps trying to get even just a referral, GPs in NI will probably know next to nothing about adult ADHD; but if they are enthusiastic, genuinely caring, and open minded, then perhaps showing them an example of the guidelines used elsewhere (see below) would help. All doctors continue to be educated throughout their career, so there's no reason for them to be adamantly adherent to old practices. NI will have to catch up eventually! www.bracknellandascotccg.nhs.uk/wp-content/uploads/2013/10/Adult-ADHD-guidelines-May-13.pdfAnyway, fair play to you, Chaosmaker, for your ingenuity and tenacity in getting sorted. I'd say your insight may prove very helpful to others back home who may have thought there was no solution.
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Post by chaosmaker on Mar 17, 2014 19:05:14 GMT
It is disappointingly facile to correlate medical conservativism to other fields. Northern Ireland is the only part of the UK which is keeping marriage heterosexual only. The same distinguishing point applies to areas like firearms and making equal the age of consent for gays. The provincial health minister is in the staunchly right-wing DUP, he holds a gun licence and is a young Earth creationist (a very literal interpretation of the Old Testament making this world to be 6,000 years old). A more progressive example is the centrist Alliance Party made Northern Ireland's first gay mayor and the first Han (ethnic Chinese) parliamentarian in Europe - but enough of the politics.
As Meddler will be aware, conservativism isn't an unusual barrier to be encountered in Northern Ireland. It is up to ourselves to make progress, in the same way in which gay rights activists have obtained equality in adoption in NI.
Sometimes I wish I had the same ADHD experience and nature to help other forum members control and exploit the condition as those other members do. Meanwhile I'll keep you posted, literally; and will be a start.
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Post by chaosmaker on Mar 20, 2014 14:52:07 GMT
Second appointment.
Bottom line in Ireland is, did it work and were there any side effects?
My dose is now doubled to 40mg/day.
A few procedural issues: make sure the prescription adds up. '120 tablets, take two a day, one month' I spotted at the surgery, so he rewrote it.
Further, he prescribed more than either the hospital had in stock or four other pharmacies I phoned. Irish pharmacies have to retain the original of the prescription. You can't get half and half from two different pharmacies; you either find somebody with it all in stock or only get it part-filled.
Another asked me to return the following day. I asked him to re-read my address from the prescription and think again. "What does that say, County... Tyrone? Oh. Three hours away. Maybe not then."
In trying to work through his limited stocks, he asked what brand I had had. Novartis, yes, but the prescription reads methylphenidate, not Ritalin. You can give me Equasym, or even Concerta if you have to.
He could find 118 of the Novartis stuff, so content I cut my losses and ran.
Another useful Irish practice is the long term plan as follows: see the psychiatrist every 6 months, and he posts prescriptions to you in intervening months. The Northern Ireland practice is shared prescribing (GP every month).
Therefore, I have two options at my disposal. The GP can give me a free of charge prescription IF he isn't a High Tory. (The High Tories were faction of the UK Conservative Party 1700-1750, ish.) Worst case scenario is the private prescription comes in the post, and on a Saturday morning I drive across the border to the nearest Irish pharmacy, for example Donegall or Cavan counties.
The psychiatrist will not post me the drug. Getting anybody in the Republic of Ireland to fill it and post it to me would be a very dangerous task; since if it goes AWOL I'll stand accused of diversion and never be prescribed the stuff again. I'll only get the long release stuff or atomoxetine, either of which is three times more expensive. At 100-200 euro a time in psychiatrist's fees, it's proving expensive enough already.
Re: FOI requests to Northern Ireland health trusts, the replies are coming in. I'll release all the info in one go.
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Post by purplepower on Mar 20, 2014 18:37:16 GMT
It's not even unusual for pharmacies not to keep Ritalin in stock. I normally pop my rx in and then come back a few days later. Can you not ask a local pharmacy to order the meds for you?
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Post by chaosmaker on Mar 20, 2014 22:21:33 GMT
No.
As is covered in minute detail above, that is impossible for two reasons:
1. There are few psychiatrists, and none who I trust, capable of prescribing in Northern Ireland. 2. Psychiatrist and pharmacy must be on the same side of the border.
My journey has been dangerously traumatic. I will not do anything which could complicate my setup (which, for all the logistics involved, works). Nor would I let anybody else come within an Astromomical Unit of it with a bargepole.
I am further acutely aware of how a fellow forum member may wish to use my experience. I intend to keep this thread a precedent which is uncomplicated enough for someone else to use if they need to. A cross-border prescription is so unconventional it would put the spanner in the pidgeons and the cat into the works.
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Post by purplepower on Mar 21, 2014 2:12:00 GMT
I'm not from the UK so you've have to forgive my lack of understanding about your geographical locations I did not realise my suggestion would require cross border rxs. The only thing I can say is if you find a pharmacist who you decide to order from regularly and promise to keep going to that pharmacist every month, you may find they are willing to store a month for you after a few months of you going to the same place.
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Post by chaosmaker on Mar 21, 2014 13:06:50 GMT
Persuade the pharmacy to order in advance? Entirely plausible and sensible.
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Post by leftbehind1 on May 18, 2014 2:42:46 GMT
Happy days chaos maker well done mate for gettin prescription sorted out it sounds like a wild goose chase getting it organised .mental health in Northern Ireland is ridiculous , I was lucky enough to get diagnosed in my teens but it hasn't made a big difference now as an adult I cant get medication myself , I'm going to have to go down the same road as you glad to see it can be done. Although its ridiculous that you have to go to such lengths to get treatment there apparently sorting out an adults mental health service in Northern Ireland for adhd my paediatrician who has now retired informed me this, but who knows when that is and if it will even occur . It's crazy when I reach 18 they no longer treat you unless you have a source around it which is hard to come by in Northern Ireland I don't know what there playing at so in relation what if you are in a wheel chair do you suddenly take away the wheel chair at 18 and have a countrywide cryptic hunt through the Nhs and other sources to find someone to re establish wheel chair treatment . I think not I t makes no sense!!
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Post by JoJo kane on Jul 27, 2021 16:41:57 GMT
What is this
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Post by Mary B on Aug 19, 2021 9:53:20 GMT
The Belfast Trust has an ADHD clinic for adults
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Post by Mricycold on Oct 6, 2021 3:28:37 GMT
Mary, do you have any contact details for the Belfast Trust ADHD clinic?
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stonesfan
Member's not posted much yet
Posts: 17
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Post by stonesfan on Oct 15, 2021 6:01:53 GMT
I went to thr same effort to pay for and get a private diagnosis and was thrilled to get prescribed the same drug
Only thing was
I found it (Concerta 18 my) too ''narcotic' (too much of a speed high)
I quit after 6 days
Had follow up apt a week after quitting and psychiatrist respected my decision to go a drug free route. He did offer me Strattera (a non stimulant) but I declined that (read too many bad reviews)
His door is always open but right now I am just pleased to know I officially have ADD
I start CBT in a few weeks. I exercise more now I meditate I plan to do more mindfulnes
Wish me luck
I wish all of you the very best too
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