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Post by rick123 on Aug 2, 2014 14:55:25 GMT
The Add Impact programme of workshops went really well, in total we had 38 attendees over the six consecutive Sundays that this was running.
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Post by rick123 on Sept 10, 2013 21:54:42 GMT
JJ - you have made some good points. Overall what is need is a strategy and policy on adult adhd in Scotland (exactly our campaign direction to the Scottish Parliament in 2011 and we managed to get a couple of sentences introduced in the Mental Health Strategy 2012-15 to say that Health Improvement Scotland will look at this). My summary of the points you have made: 1) we need clearer guidance for GPs (and psychiatrists) 2) guidance to cover co-morbid conditions 3) patient centred approach with a range of interventions offered 4) procrastination and sleep difficulties are strong indicators for adult adhd. All good stuff and points worth making.
Our patient interest group submission to the Scottish Medicines Consortium was delivered in time for the deadline. Their decision on whether to approve Strattera for adults with ADHD will be published on 11 November.
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Post by rick123 on Sept 1, 2013 14:14:02 GMT
Regarding the questions in my first post: The wording for the questions is taken from the SMC template and guide for submissions, I agree with you in that they can be taken many ways. We can use this to force home some points. My suggestion is: 1)Which aspects not met by current treatment. Answer: NHS treatment for adult adhd is the exception rather than the rule. Adults presenting for assessment are not given a fair assessment by a psychiatrist knowledgeable in the condition and experienced in its treatment. Because there is no SIGN guidance on management and treatment of adhd in adults, there is no opportunity for NHS boards to develop strategy and policy for dealing with this care group. When diagnosis and treatment is provided it is all too often just medication and not the multimodal approach that is recommending in countries where there is official guidance for treating adult adhd. 2) Aspects where help is most needed. Answer Inattention, procrastination and focus. Medication can help with this, but pills do not teach skills and medication should be given with case appropriate psycho social education, talking therapy and mindfullness meditation. Working memory and emotional regulation. The occupational therapy interventions that are provided for other conditions where there are executive functioning impairments such as acquired brain injury are extremely effective for adult adhd, however these are rarely available for adult adhd. In the private sector this is often the sort of interventions that is provided by counselors and specialist coaches. Diet, sleep and exercise. Advise on these three areas can be very beneficial to adults with adhd.
I was on Strattera for 6 months and eventually stopped taking it because of adverse side effects. I do accept however that there are certain cases where it has proved to be extremely effective.
Happy to consider any modification or suggestions you may wish to make.
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Post by rick123 on Sept 1, 2013 13:24:07 GMT
Regarding licencing: I will try my best to give the situation for Scotland. Health and Social Care are devolved powers to the Scottish Parliament. NHS Boards in Scotland are not permitted to act against the regulatory guidance from MHRA (if a drug application for approval to MHRA has been refused then NHS Boards are not permitted to dispense or prescribe it). However just because there is a UK licence for a medication does not mean it is approved by NHS Scotland or that NHS Boards will dispense or prescribe it. For Scotland it is the Scottish Medicines Consortium that provide the detail recommendations under which the NHS Boards act. Doctors in Scotland prescribing atomoxetine for adults who where not diagnosed with the condition when they were children, are still prescribing off label. The Scottish Medicines Consortium are just now considering the application from Lilly UK approved approved in June by the Medicines and Healthcare Products Regulatory Agency and have asked for Patient Interest Groups to submit representation. It is extremely unlikely that they will not endorse the MHRA ruling, but it could happen. For us it is an opportunity to point out that a) there is still no official clinical guidance for the treatment of adult adhd in Scotland SIGN ignores adhd in adults and b)adult adhd is a real medical condition, something that even now some of the NHS Boards seem to be resisting. - Yes we are a long way behind England in terms of NHS treatment for adult ADHD.
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Post by rick123 on Sept 1, 2013 11:19:13 GMT
Atomoxetine (Strattera) has been licenced in Scotland since 2004 for adults who where diagnosed and medicated for adhd as children. There is currently no medication endorsed by the Scottish Medicines Consortium for adults who are first diagnosed with the condition as adults. I believe the situation is the same for NHS England, Wales and Northern Ireland. I am working on our (Addressing the Balance) submission to the Scottish Medicines Consortium on the proposal to licence Strattera (atomoxetine) to adults with adhd in Scotland. Deadline for this is 9 Sept. We want to concentrate on what it is like living with adult adhd, we have discussed this extensively at our support group sessions, but your suggestions here are also valid and we would like your help. The 2 key questions to answer are: 1) Which aspects of living with adhd are not met by current treatments? and 2) Which aspects do adults with adhd need most help with?
Bullet points to answer this would be VERY helpful. I need at least three top points of each question. We could answer reams on this but I will need to keep it concise.
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Post by rick123 on Aug 15, 2012 17:21:09 GMT
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Post by rick123 on May 16, 2012 13:41:16 GMT
The Edinburgh coffee bar meetings are still running. We meet on the first Thursday in the month. Trying out a Scottish chatroom session tomorrow 17th May 7-9pm. THE AADD-UK CHATROOM client14.addonchat.com/chat.php?id=502850
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Post by rick123 on Feb 12, 2012 11:20:15 GMT
Yes - you are correct. GPs are not able to diagnose by must refer for specialist assessment. Usually the general adult mental health services. Psychologists can assessment but not prescribe medication, they can work on psychological interventions, ie talking therapies. GP's can prescribe on a psychologists assessment and recommendation under a shared care protocol, but very few are willing to do this. Psychiatrists can provide assessment, treatment and prescribe medication, but because there is no strategy and policy on adult adhd in Scotland they tend not to act on this because of uncertainty reluctance.
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Post by rick123 on Feb 12, 2012 11:08:56 GMT
We still hear from support group members that say their gps do not know who to send referrals to for assessment for adult adhd. General adult psychiatric services are not comfortable with providing an assessment (to say the least) and the only NHS psychiatrists that have experience of assessing and treating adult adhd are not allowed to take out of area referrals. There are significant barriers to obtaining a fair assessment in Scotland. If you are in the Gramphian NHS area you could ask your GP to provide a referral to the Cornhill Hospital in Aberdeen.
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Post by rick123 on Feb 12, 2012 10:49:35 GMT
Canesmum - are your appointments at the Cornhill Hospital. They do seem to be slowly building an appreciation of adult adhd. The good psychiatrist you had must have moved from Child and Adolescent Mental Health to adult services (you were lucky). CAMHS and adult mental health services are separate. We have people coming the support group that say when they are at appointments with the "specialist" they can see that the psychiatrist is looking up the symptoms on the screen and reading from them at the same time they are providing the assessment.
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Post by rick123 on Dec 16, 2011 23:57:52 GMT
If you live in the NHS Lothian area or the rest of Scotland and are having difficulty accessing assessment then I would like to hear form you. We can make use of this information in our discussions with with MSPs and the Scottish Parliament.
Best advice I can give is write to the designated lead consultant at NHS Lothian, copy to Dr Shah, the strategy directors at NHS Lothain and to your GP. I can give address and contact details.
The more patients that come forward the stronger our case. The time for pressing this issue is now, the Scottish Government consultation process is open until the end of January. If you are having difficulties speak up.
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Post by rick123 on Nov 13, 2011 20:27:04 GMT
NHS Lothian have written to all the GPs in the Lothian area to say that referrals for adult ADHD should in the first instance be directed to a psychiatrist in the General Mental Health Team. The GMHT psychiatrist will then pass on the case to the Lothian Adult ADHD clinic if they think the symptoms are severe enough to require medication.
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Post by rick123 on Sept 13, 2011 22:53:16 GMT
I have sent you a personal message.
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Post by rick123 on Sept 2, 2011 20:30:23 GMT
We have raised Freedom of Information requests with all the NHS Boards in Scotland (14 in total) asking what services they provide/intend to provide for adults with ADHD. The returns are a resounding "very little" apart from Glasgow who have not even returned a response.
We are taking our findings to the Public Petitions Committee at the Scottish Parliament and will also be active in the Scottish Government consultation process for the new mental health strategy for the next three years. We believe that services for neurodevelopmental disorders are on the agenda as something that the Scottish Government wants to look at so we are well place to provide the evidence, provided they are willing to listen.
We have many case histories from members of the support group, but we could do with more. So if you live in Scotland and want to tell your story then please get in touch (info@addbal.co.uk). You don't have to write a report or anything just say you are interested in passing on your experiences of the NHS with regard to adult ADHD diagnosis and/or treatment and someone will get back in touch.
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Post by rick123 on Sept 2, 2011 20:07:17 GMT
The Central Scotland Support Group is still holding monthly coffee bar meetings on the first Thursday in the month 6-8pm Espresso Mondo, Edinburgh. 12 people at the meeting last night and the next meeting will be on 6th October. We are hoping to re-activate the Glasgow meetings soon - anyone interesting in meeting up in Glasgow then let me know.
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Post by rick123 on Sept 2, 2011 20:02:36 GMT
Lille Photocopy the letters you have received from the Lothian Clinic and send the lot back to them with a letter just saying please will they let you know the soonest date for an appointment with Dr Shah that they have available, cc it to your GP and perhaps you MSP if you are feeling particularly angry.
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Post by rick123 on Jul 25, 2011 22:23:25 GMT
The Lothian Adult ADHD Clinic is still running at the Andrew Duncan Clinic, Edinburgh Royal Hospital. Dr Prem Shah is still the lead clinician, but if you are a new patient you will probably be seen by a general psychiatrist first. I think only the severe cases of adult ADHD will be passed to the ADHD Clinic.
Sounds like the NHS Trust is trying to starve the clinic of resources, staff and patients - goofy logic - you will only be seen by an adult ADHD specialist once you have been assessed and prioritised by a non specialist.
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Post by rick123 on Jul 6, 2011 22:23:00 GMT
Template letter - yes. - I will forward this.
We have raised freedom of information requests with all the NHS Trusts in Scotland and we intend raising an action with the the Public Petitions Committee, draft is prepared and ready to submit.
Watch this space.
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Post by rick123 on Jun 21, 2011 16:32:28 GMT
Thanks snickerz, Hope the Equasym is working ok? - we will need some adhd folk on meds if we are going to get anywhere with this.
I have still not got to the bottom of why there is no formal transition service in Scotland from CAMHS to adult services, why did they consider that this was not necessary when the SIGN guidance was prepared? The argument that adult ADHD diagnosis can be carried out in mainstream adult services is laughable.
The following is from the Chief Medical Offers annual report of 2009. "Each year around 500 Scottish teenagers with active ADHD leave under 18's services, having received a lot of help and support. Because ADHD is under-diagnosed in Scottish children, this figure is less than half what it should be. They move on to services for over 18's where ADHD is at best an unfamiliar diagnosis and at worst its existence is denied.
Some children grow out of ADHD, and symptoms do mature, but one-third of childhood sufferers will still have active symptoms. Most adults with ADHD will have less hyperactivity but still struggle with their attention and impulsive behaviour. There are the added problems of easier access to alcohol, needing to keep a job and being allowed to drive a car - resulting in increased substance misuse, anti-social behaviour and poor employment prospects."
Even when there is some common sense stated, we still do not get a defined clinical pathway for diagnosis.
I particularly like the summary from the Inquiry into child and adolescent mental health and well-being 2009: "Despite the commitment of the Scottish Government and previous Scottish Ministers at a policy level, the existence of an agreed framework and the devotion, good work and admirable efforts of many individuals across the field, mental health and well-being seems not to have been a priority amongst those responsible for delivering the policy."
I will keep digging and pm or send on some drafts. Anyone else interested in challenging their MSP or NHS Trust on this?
Service users do count when tackling the NHS and it is about time we asked them to put some action behind the commitments about engaging with community groups.
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Post by rick123 on May 22, 2011 15:42:03 GMT
I have moved this message from the item in the Famous People thread. At last an intelligent programme that looks at children and adult adhd conditions and doesn't just say that the adult condition is just a continuation of childhood symptoms. Congratulations to Rory Bremner and Avril Sinclair for publicly saying that they have adult ADHD. I am looking forward to listening on Monday night. The item in the Edinburgh Evening news is well written too. edinburghnews.scotsman.com/featur....d-is.6771496.jp
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Post by rick123 on May 21, 2011 15:27:03 GMT
Well the elections decided and Alex is back in the hot seat.
The statement from Nicola Sturgeon on ADHD in 2008 is copied below:
We are committed to the earliest possible detection and intervention for those with ADHD. Treatment of individuals with ADHD, whether diagnosed in childhood or as an adult is the responsibility of the clinician, in consultation with relevant professionals involved in their case. All relevant care options should be considered as part of care offered to provide the best outcomes for the individual. We recognised the valuable contribution that psychological therapies can make to improve the quality of life for people with mental health problems. Access to appropriate psychological therapies should therefore be considered as part of the care options offered to adults with ADHD.
Nicola Sturgeon Cabinet Secretary for Health & Wellbeing 2008.
Not much has changed 3 years later, there is no clinical pathway to diagnosis for adults in Scotland, GPs are still poorly informed about adult ADHD and where to refer patients. Even when referred to adult services, patients receive poor advice and often no help. GPs are not able to access the psychological therapies much praised by N Sturgeon and can only refer patients for further assessment. Time for a few choice letters to MSPs I think, anyone else want to help?
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Post by rick123 on Apr 16, 2011 19:00:48 GMT
Went to a Scottish Parliament reception on 7th March, Malcolm Chisholm fairly supportive, also attended the No Mind Left Behind international conference on 29/30th March and Jackie Baillie gave a very supportive speech. With the lead up to elections now is a good time to challenge candidates on their policies on ADHD, neurodiversity in general, why do they give such a low priority to mental health and support in higher education for those with learning difficulties.
I have a copy of Scottish Government commitment to adhd from 2008, I will post it on here later. I know there has been not much movement since then. Once you read it please use it to challenge prospective MSPs when they call at your door.
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Post by rick123 on Apr 16, 2011 7:44:04 GMT
Good luck with your meeting today your guys.
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Post by rick123 on Apr 6, 2011 19:55:40 GMT
Yes we are still going! Meeting tomorrow night in Edinburgh and on Saturday in Glasgow - details are on our website. I am not so good at updating the calendar on this forum because I keep forgetting to add our meetings.
The very good news is that we have free use of the patients library at the Royal Edinburgh Hospital, we have booked a weekly slot for Thursday evenings. We have a study club on the second Thursday in the month and a T3 meeting on the third Thursday. Anyone fancy a shot at this - then drop me a pm or email.
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Post by rick123 on Apr 6, 2011 19:00:44 GMT
Any news Hunter?
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Post by rick123 on Jan 29, 2011 14:04:50 GMT
I really like the Buddhist prayer given at the start of the days proceedings, on 12 Jan:
May all beings have happiness and the causes of happiness. May they all be free from suffering and the causes of suffering. May they all enjoy true happiness which is free from even the slightest suffering, And may they all develop equanimity without preference for loved ones and aversion towards others
--------- still striving --------
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Post by rick123 on Jan 29, 2011 14:01:47 GMT
The Education Committee of the Scottish Parliament effectively killed off the Autism (Scotland ) Bill by not supporting it at their meeting of 17 December 2010. The vote in the Scottish Parliament took place on 12 January (5 for 109 against). The committee report stated that the Bill is “not likely to bring significant improvements to service provision” and “the obligations under the Bill are not robust enough to achieve meaningful difference to service provision for people with autism.” It was a classic case of you are - dammed if you ask for too much and dammed if you ask for too little. Main argument against, was that the Bill did not address the fundamental issue of ineffective implementation by NHS trusts, of the estimated 50,000 people in Scotland with Autism and ASD only 7,500 are known to the NHS. The Bill didn’t define Autism and ASD and left it for later development by the Scottish Government to make the definition, neither did it exclude other pervasive developmental disorders. In effect adult ADHD could be included in the remit covered by the Bill if the Government should so choose. Partial success, is that when the Bill was first introduced 26 May 2010 it asked for a Scottish Government Strategy on Autism. The strategy was published on 9 September, which achieved one of the objectives, but effectively took away some of the validity of the Bill. www.scottish.parliament.uk/business/officialReports/meetingsParliament/or-11/sor0112-02.htmThe debate makes for some interesting reading and gives some insight into the Scottish Government thinking on neuro diversity issues, but don’t hold your breath, if you think there is going to be much change.
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Post by rick123 on Jan 26, 2011 22:20:43 GMT
Just in case there is any doubt about what has happened to the Scottish Autism Bill, it was rejected, although there was a lot lot of high level support for it.
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Post by rick123 on Jan 26, 2011 22:16:17 GMT
If your have been refused a referral from your GP there is an official complaints procedure to follow before even considering court action. We can help with organising a patients advocate and there are organisations like the Scottish Patients Association that take up your case with the relevant NHS trust. Happy to help where I can for any adults in Scotland that are struggling with obtaining a dx. If your GP comes up with the old chestnut that they do not believe ADHD can be an adult condition, then point them in the direction of clinical knowledge summaries by the NHS. Advice on this is that GPs should refer if: - The symptoms began during childhood and have persisted.
- The symptoms are not explained by other mental health disorders (although there may be co-existing conditions).
- The symptoms have resulted in moderate or sever psychological, social, educational, or occupational impairment.
The question usually comes down to whether or not you have moderate or sever impairment.
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Post by rick123 on Jan 15, 2011 23:07:27 GMT
NICE guidance does not apply in Scotland, we have the tartenised version SIGN and it does not cover adults. I know at least two members of the committee that pressed for recommendations for adults to be included but they were overruled. I am not on meds for adhd, waiting for my next appointment with the psych in March. I have been referred to CBT and had one session. The criteria for a dx is that ADHD is pervasive across at least two areas of your life (family/work/social) and can be demonstrated to be present before the age of 7. GPs can only refer you and are not able to provide a diagnoses themselves.
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