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.
I don't know how this relates to Scotland of course.....
For your questions, I'm sorry if I'm being dim, but I'm not entirely sure what you mean -
1) Which aspects of living with adhd are not met by current treatments - do you mean if you're medicated with stimulants, what things do the stimulants not address or not address enough - eg my meds don't completely address procrastination and distractibility. Or do you mean that there's not enough awareness of adult adhd, or you can still need help for depression or you still have sleeping problems.... Or that there should be more psychological / behavioural support accompanying medication....
2) Which aspects of living with adhd to adults with adhd need most help with - do you mean which adhd symptoms are most troubling - eg procrastination is the worst. Or do you mean we need GPs to be more aware, medication to be available when diagnosed etc
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.
Words fail me actually - aside from the insanity of not recognising adult adhd anyway - it seems ridiculous that NICE has guidelines for us in England yet in Scotland it's not even officially recognised... Aside from not even considering this would be the case, if I'd had to put money on it, I'd have said that Scotland would've been ahead of us...
I very much feel for you still fighting this initial battle....
(Sorry if it's only me - but still need bit more info re your specific questions then
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.
Sorry only just posting now - I've not had any time..
I agree of course with everything you've already said and also think the following:
- GPs need to be educated - they're the gatekeepers and too many times they dismiss the adult for medically inaccurate reasons - "you can't have adhd because"..... only children have it / you have a degree or qualifications / you're sitting still.....and so on
- GPs prescribing with shared care need more education on the meds. For stimulants, too low a dose can cause counterintuitive effects (sleepy, hungry) - so GP then thinks they're not working or slows down titration rate, when what's needed is for dosage to be higher. Lack of knowledge about meds also makes GPs even more reluctant to agree to prescribe.
- CCGs need to have a policy for GPs prescribing stimulants, which indemnifies GPs liability for prescibing to the point that they would be in were they prescribing licenced medication. GPs take on extra professional liability for prescribing unlicenced meds so not all will take this extra risk. However, there are guidelines by GMC and NICE and NHS England for prescribing unlicenced medication - and all state that if a GP follows these guidelines, they're unlikely to have a successful case made against them if something went wrong. There's a CCG in Dorset somewhere that specifically states that they will accept all liability for GPs prescribing stims to adult with ADHD as long as they've followed the correct GMC guidelines and Dorset's guidelines on it.
- Patients and GPs need to know what to expect from medication - it's not a cure-all, but no one tells you this, we need realistic information to manage our expectations, which helps with getting the most out of the medication.
- Patients need psychosocial help / information because we also have no idea what is 'normal' for people without ADHD - therefore we don't have a realistic idea of what to aim for or to compare our progress against / assess how effective the medication is. This point is linked to the previous one - e.g. I'm medicated now, I have to write something that'll take a while, when I eventually do it, I'll get distracted, I'll be able to re-focus more easily that before though but I'll still get up, I'll still get diverted on an internet tangential thing but I'll make myself close all the tabs sooner than I did before. So is that what normal people do anyway? Does everyone get bored and distracted? If they do, do they get absorbed on the net and have 10 tabs open or 20 or 5 or 1? With no point of reference, I question myself and feel rubbish, I question the meds - are they working enough, should I change dose, should I change meds... and so on. I'm left unsatisfied, feeling a bit rubbish, feeling a bit hopeless - and it could just be that what I do now is considered completely normal - in which case, I'd be pleased, happy with my meds, ok with life - and I'd be more likely to keep on pushing through, to try and develop strategies to help me etc etc.
- More help with depression - it seems standard SSRIs aren't that effective for adhd brains - yet there's not enough info/advice/knowledge of effective anti-d's for us.
- More acknowledgement of sleep problems - and pharmaceutical help.
- More education all round - most people here only know they have adhd after years of failures and months of internet searching. They've been psychological service users for years - if a 'regular' is presening to their GP for more anti-depressants / sleeping problems / counselling etc, a few knowledgeable questions about their life / behaviours etc should raise undiagnosed adhd as a possibility. I'm not saying I would know or be able to accurately diagnose everyone with adhd, but I would pick up on telling signs that would warrant a consideration of it.
Everything you said - and agree with worst aspects - procrastination is worst for me... sleep problems also towards top of my list.
- and also specific courses and help for parents with adhd - because organising and running life for children on top of yourself is hard anyway but adhd makes it so much harder, and the children are disadvantaged.
- and regular organised, local support groups - with an adhd qualified facilitator - to help with meds advice and behavioural advice / support - and for peer support because adhd is isolating.
This ended up longer than I'd intended...sorry
Good luck with it all, I really hope things start moving forward for Scotland xxxx
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.