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Post by Deleted on Aug 8, 2013 18:10:15 GMT
I am writing this stuff here, as it will hopefully be useful to others who end up in this situation.
So, so far I have been diagnosed ADHD by an NHS Consultant Psychiatrist. She has recommended I begin on Concerta.
She wants my GP to prescribe. My GP wants my psychiatrist to initiate treatment, titrate and then enter into a shared care agreement.
I have spoken to both parties and neither will initiate treatment for whatever reasons.
First step : I rang up my local PALS. Their details are all on their website. I have written and sent my first ever complaint. I have used (copied!) some of the things Annie said. I'm sure you all could write this better, but I had to start somewhere.
8th August 2013
Dear Sirs,
A few months ago I was diagnosed by my psychiatrist from the xxxx Centre with ADHD. As I also have bipolar, my psychiatrist wanted to make sure my bipolar was well stabilised before beginning treatment for ADHD.
On 2nd August 2013, my psychiatrist faxed my GP (GP - xxxx Medical Centre), asking for Concerta to be prescribed. They then had to check this with Medicines Management. Medicines Management said my psychiatrist would have to initiate and titrate the treatment to the point where the medication regime could be transferred to the GP with a shared care agreement.
I have since spoken to my psychiatrist who said she is unable to prescribe, that her hands are tied on this matter and it would have to be a GP who prescribed. I have already changed GP surgeries this year as my previous GP refused to prescribe ADHD medications under the direction of a specialist.
Why is it that the local CCG haven't got a shared care agreement in place for ADHD? NICE brought out guidance in 2008 showing categorically that Adhd can continue to require treatment for approx 60% of children diagnosed in childhood, who will require on going medical intervention in adulthood. Also Nice anticipated that many adults who were not diagnosed in childhood would require an assessment/diagnosis and treatment service.
From evidence and statistics I have read, stimulant medication can have hugely positive effects. I am not a user of mental health services because I want to be, but because I have been and am very ill and am desperately trying to get better. I truly believe ADHD medication could make a huge difference to the quality of my life, which in turn will benefit my children, husband family and community. I have been in the mental health system a long time now. I cannot put into words how stressful and frustrating it is to be unable to take a medication which potentially could really make a significant difference. It feels very cruel. I have offered to pay for the medicine myself, which I could afford as I am in receipt of DLA, but apparently I can't do that with an NHS diagnosis. I cannot afford the full amount this would cost to go private.
This is the first complaint I have ever made. I am not complaining against my GP, or my psychiatrist (who has been outstanding). My complaint is against a system I don't fully understand, a system which is affecting me personally, my family, my quality of life, hope for the future and is causing me much angst.
Please, could something be done about this?
Thank you for your time and consideration.
Yours sincerely
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Post by JJ on Aug 8, 2013 20:24:15 GMT
Excellent letter Petra Rooting for you xxxxxxx
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Post by annie on Aug 8, 2013 20:29:44 GMT
Hi Petra
Well done for not taking this lying down - you are being badly let down by the NHS!!
When you say you've written to the Medicine Management Group, is this a sub group of your local Clinical Commissiong Group - (used to be called the Primary Care Trust) and is this who you have written to?
Before the CCG's were set up it used to be the responsibility of the PCT to ensure there was a shared care protocol in place, agreed by the Mental Health Trust and their local Gp's which meant patient's would not be subject to this "buck passing" The CCG are now responsible for shared care arrangements If it is the CCG you have written to, I would suggest you send a copy of this letter to the Chief Executive of your Mental Health Trust and the Manager of your Gp practice asking them to ensure you receive the treatment Nice recommended in their 2008 guidance.
The fact that we are nearly 5 years on from the publication of the NICE guidance and still have huge areas of the country where there's no specialist Adult ADHD service, or shared care in place, is an absolute disgrace!!
You can't give up - you've come this far. Get those copies of your letter sent off to the other people and say you expect a reply within 14 working days.
Let's know how you get on.
annie
Your Gp is right. Nice does recommend the titration of ADHD medication should be undertaken by a specialist in ADHD. The Gp should only prescribe when the person has been stabalised on the medication
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Post by fuzzywuzzy on Aug 8, 2013 20:46:49 GMT
I think it's a very good letter petra.....to the point, expressive and heartfelt, without being too emotional...... X
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gremico
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Post by gremico on Aug 8, 2013 22:06:26 GMT
Great letter and echo what annie says ie my prescripts were initialized by a specialist psychiatrist (In my case private. Life is too short and I have a credit card etc!),then passed over to be prescribed, through shared care, by my GP. xx
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Post by Deleted on Aug 9, 2013 6:00:08 GMT
I can't tell you how much all your encouragement has encouraged me!! Xxxxxxx Annie, I sent that email to PALS through their complaints email address as advised by them, not to Medications Management. Am definitely going to send copies to the other people you mentioned - hadn't thought of that, thank you. Feel quite fired up and less overwhelmed by it all today - quite enjoying being on a mission! Edit: have just re read email I sent and observed I've spelt my psychiatrists name a number of different ways as I went along
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Post by JJ on Aug 9, 2013 10:39:51 GMT
Really pleased yr feeling fired up - wishing you sooooooo much luck with this xxxxxxxxx
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Post by Deleted on Aug 14, 2013 19:24:29 GMT
14 August
Pals rang me today and are beginning to look into it. On Pals website are a lot of different phone numbers and email addresses for them. Tip to others, make sure you keep a note of the actual number/ email address you actually use - it will save you considerable stress and confusion!!
in the mean time, I have seen GP and got myself on the waiting list for counselling. I know I will have to wait ages, but I am trying to do everything I can to look after myself and cope (not doing too well at all at times). In the past I have had counselling a couple of times, and its really helped to talk freely in an environment where you are not judged and are not going to hurt anyone's feelings. A lot of stuff has gone on in my life the last few years. That coupled with the revelation of ADHD and the process which comes with it, I feel a bit like a ticking time bomb if that makes sense?
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Post by JJ on Aug 14, 2013 20:01:01 GMT
Sending you hugs xxx keep strong xxx
Counselling sounds a good idea to help you through this mess....
Did Pals give you an idea of any time frame? Xx
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Post by Deleted on Aug 14, 2013 20:41:56 GMT
Great idea for a thread I love that they are called PALS, brilliant! As an aside, I would love to know why the psych won't prescribe and titrate through 3-4 months and hand over? Seriously, how hard can it be to tear off one of your pink slips and help to change someone's life? Don't want the responsibility? Get out of mental health and back to academia where you belong Hope you make great strides with this
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Post by Deleted on Aug 15, 2013 0:46:49 GMT
Pals (I feel stupid writing that word now!) - my mates 'pals' are sending a letter saying what they are planning to do and the time frame. They asked for my permission to share my email/ details with the CCG. They can't guarantee to resolve the situation but they did sound genuinely concerned/ interested etc...
Obviously, if it not resolved I will then go up the next level on the complaints chain.
I still can't fully grasp why psychiatrist can't prescribe - but I do know she would if she could.
xx
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Post by Deleted on Aug 15, 2013 4:44:21 GMT
strange that one.
It's usually (as the GP suggests) the Psychiatrist that initiates treatment, titrates the dose until you are stable, then passes it to the GP.
Sounds like the psychiatrist (or their bosses) don't want the responsibility.
Good luck with it, and I hope it happens sooner rather than later.
John
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Post by Deleted on Aug 15, 2013 12:15:36 GMT
Thank you John x
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Post by Deleted on Aug 21, 2013 21:12:00 GMT
Received letter from Pals today. I am happy with what they are doing so far. Here's what they said:
19th August Re: Complaint regarding access to ADHD medication.
Dear .....
I write further to your email dated 8th August 2013 detailing concerns you have about accessing ADHD medication and I understand that you wish to complain to Stoke-on-Trent Clinical Commissioning Group about this matter.
I can confirm that we will be asking the practice to respond to your concerns as set out in your letter. In accordance with the complaints regulations I need to agree a suitable timescale in which to respond to you. I have asked Stoke-on-Trent Clinical Commissioning Group to reply to me by 6th September 2013 at the latest and advised them to let me know of any reasons why they may need longer than this. When I receive their response we will review this to ensure it answers your complaint, before it is forwarded to you by Dr......, Clinical Accountable Officer. It may therefore be 13th September 2013 when you will receive a written letter regarding the outcome of your complaint. If you have any concerns regarding this timescale or method of communicating with you then please let me know.
Please be aware that the concerns raised by you will need to be copied to other people within or advising the Organisation. You will also need to be aware that the practice and possibly people within the Organisation will need to review your medical records in order to try and resolve your complaint. I would assure you that such information will only be shared with those who require this as part of a review of the issues and the need for confidentiality will be respected at all times, Do not hesitate to let me know if you have any queries or concerns about this.
If you wish to receive any independent advice you may choose to contact the Independent Complaints Advocacy Service.
Finally, do not hesitate to contact me if I can be of assistance.
Yours sincerely
Patient Liaison Officer
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Post by Kathymel on Aug 21, 2013 21:21:23 GMT
Another month drifting by ... still, hopefully this will bring about some change.
Finger crossed!
Kx
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Post by Deleted on Aug 21, 2013 21:44:20 GMT
Oh well - it's August - summer holidays. This months usually a bit of a blur for me anyway!
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Post by JJ on Aug 21, 2013 22:46:45 GMT
Petra, I'm so pleased for you xxxxx Still a wait of course, but at least something's going on and someone's got to justify their (in)actions.... You should be proud of yourself that you've got that letter out and people are looking at this because of it Hurray for you - and sooooooo much crossed xxxxxx
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Post by JJ on Sept 22, 2013 22:48:25 GMT
Petra - have you heard anything about all this yet? I've been thinking about you and wondering what was happening cos the dates they gave you for a response have passed now? Xxxxxxx
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Post by Deleted on Sept 22, 2013 23:36:13 GMT
Aww - thanks JJ xxx I rang them on Friday to see what was going on. Apparently a letter is in the post to me explaining that it will be a few more weeks before I get a formal reply due to relevant people in meds management and CCG being on holidays.
To be honest, am glad I'm not on meds at the moment because I'm really improving - if I'd been on meds I would have put it down to that. Can't believe I'm saying this, but it no longer feels like the be all and end all getting the drugs
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Post by JJ on Sept 22, 2013 23:45:08 GMT
That's so lovely to hear you feeling so positive xxxx
Take yr improvement is being helped by the mindful thing? I keep reading all the conversations and thinking I really should try myself ....
Really pleased for you xxxxx
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Post by Deleted on Sept 22, 2013 23:51:54 GMT
It's very early days for me with the mindfulness stuff - but I am becoming increasingly convinced it is one of the major keys in recovery x
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Post by Deleted on Sept 28, 2013 2:35:19 GMT
Aww - thanks JJ xxx I rang them on Friday to see what was going on. Apparently a letter is in the post to me explaining that it will be a few more weeks before I get a formal reply due to relevant people in meds management and CCG being on holidays. To be honest, am glad I'm not on meds at the moment because I'm really improving - if I'd been on meds I would have put it down to that. Can't believe I'm saying this, but it no longer feels like the be all and end all getting the drugs Letter says I 'may' hear from them on 11th October. Have changed my mind. It is the be all and end all. I want the drugs.
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Post by Kathymel on Sept 28, 2013 7:18:30 GMT
I really hope you get that response back from PALS, soon.
I'd forgotten that you had been diagnosed by an NHS psych until I reread this. Insane that you still don't have meds. Really curious as to why she couldn't prescribe.
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Post by Deleted on Oct 12, 2013 11:58:04 GMT
Letter received from Stoke-on-Trent Clinical Commissioning Group.
Thank you for your e-mail of 8th August 2013, in which you expressed your concern at there being no local shared care agreement for treating adult ADHD with Concerta (methylphenidate).
Unfortunately, there is no shared care agreement as the CCG does not commission a service for adult patients with ADHD. Producing a shared care agreement has been discussed within the local health economy, but has not proceeded because there needs to be a service in place first.
I am aware that NICE recommends the use of methylphenidate in adult ADHD within a clinical guideline (albeit it is unlicensed for initiation in adults). However, NICE clinical guidelines are not mandatory for CCG's to implement, therefore, each year the CCG has to undertake a prioritisation process to determine which services are to be provided.
Your GP is correct to refuse to prescribe methylphenidate without a shared care agreement, as it is recommended that this drug is initiated and stabilised by a specialist before transferring prescribing to the GP. I appreciate that it is frustrating that your specialist is not currently able to provide this service to you either. However, there is an option for your specialist to ask her organisation to submit a business case for an adult ADHD service to the CCG. This would then be considered as part of the CCG's planning and prioritisation process. An alternative to this, if you have clinically exceptional circumstances, is for your specialist to apply for funding via the Individual Funding Requests (IFR) process.
I am sorry that you are currently unable to obtain methylphenidate , but I hope that I have explained the local system and provided hope of a possible way forward.
Yours sincerely
Clinical Accountable Officer
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Post by contrarymary on Oct 12, 2013 15:14:32 GMT
wtf? bums. so sorry you are going through this. an Individual Funding Request from your specialist is the next step to getting medicated? But how are the ccg able to get away with simply not providing a service for a particular patient group - i don't understand?
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Post by Deleted on Oct 12, 2013 15:49:18 GMT
Am I reading too much into the implication that the GP *would* prescribe after titration?
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Post by JJ on Oct 12, 2013 17:26:45 GMT
Hi Petra, I can't post cos using my phone and driving home in a bit, but I showed your letter to a nurse practitioner and ADHD clinical nurse specialist and someone else who works for Addiss- they said this was crap of course and I have written down what they've advised you to do. It's not all lost. We've found out lots about our proper rights etc -i'll post tomorrow but I wanted to post this now cos you must be feeling so rubbish xxx
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Post by Deleted on Oct 12, 2013 19:30:06 GMT
Thank you so much JJ, I really appreciate this. Am doing ok actually, you kind of expect these blocks don't you.
Michael, I'm not sure. My GP said she would prescribe once I was diagnosed and she had the letter from my psychiatrist.
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Post by JJ on Oct 13, 2013 19:16:59 GMT
Hi Petra xx Unfortunately I can't write everything I found out for you because I've left my bloody notes in Liverpool Jan's bringing them back for me so I will have them at some stage But I do remember the first bit of the advice - you have to contact your psych, make reference to the NICE guidelines saying that mph is the first line treatment for adults and ask her to put in writing why she won't prescribe you mph. By the time you get a reply from her, I'll have the rest of my notes The people I spoke to were horrified at your CCG and your psych. One thing I do remember without my notes is that they were both surprised they looked at your bipolar first - both of them said she should've treated the adhd first as it is so highly treatable (in that 80% of people respond to treatment) and then you see what you've got left in terms of how bad the bipolar is then (cos some of the mood issues are adhd anyway, so if you treat the adhd ones, you can properly see the bipolar ones) Xxxxxxxxx Edit: meant to say too, if you're feeling overwhelmed and can't face writing anything or looking at anything, I'll write a letter for you if you want - please don't hesitate to ask me if I can help xxxx
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Post by Deleted on Oct 13, 2013 19:42:37 GMT
Thank you JJ. There is no rush. I've been asked to see my GP next week for a 'mental health check', and will be seeing my psychiatrist on 1st November.
I'm surprised they said to sort ADHD out first , although it makes sense, as all the literature I've read says to sort the bipolar out first, including Prof David Nutt.
I've been on different bipolar drugs for 10 years now, so it would be nice to try something different for a change!
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