Medication for Anxiety and Depression - Dr. Alan Hakim

thank you very much just letting everybody settle down so I'm just gonna be talking for about 15 to 20 minutes and this really is just a snapshot and I've and I've pulled out two particular things that I'd like to sort of explore really in this context and one is us recognizing the side effects of all of these medicines and you think that's maybe a bit of a weird thing to do because really when you see the list you'll think well he's not promoting that is he because you know the side effects of these medications is something that we really do have to think very carefully about and in in many respects mimic many of the related disorders that we discuss on a regular basis and I'm also going to talk about withdrawing in stopping treatments it's it seems a strange thing to say but it's easy to start somebody on treatment it can be very very difficult to then take somebody off treatment because of the the overall effects that it has on the body so just to kick off you know the good news is is that since this morning when I introduced I haven't lost any of my qualifications or my job the bad news is is they still don't have any commercial interests and so if anybody out there on Don that's looking if you're interested you know I'm whatever no I'm not actually I'm not I got far too much to do and I would actually just like to take the opportunity to really thank all of the speakers that have come so far I know that we've got a couple that are coming after me Phillip very dear friend of mine and a good colleague of yours is talking afterwards I will be supporting the hedge study after I've spoken here so I won't be here at the back end of the meeting so could you just share with me around of applause for all of our speakers today and everybody and everybody behind the scenes our staff and everybody here at at the college that are the Machine that make this work yeah no I know I'm good aren't I yeah I know I'm good but I'm not that good right because we can't do any of this without without all of that skill and expertise and the you know you've met some of the team today but they are really quite incredible and it's a huge privilege and an honor to work with them so right what am I going to be talking about so I think the first thing I'd like to say and this is very much the same for pain medicines and I wasn't able to be in the room when Helen was turkey talk talking earlier but with both pain medicines and with anti-anxiety and antidepressant medicines there are actually no studies in HST or EDS that tell us whether there are particular types of medicines that are better than others we've not done any clinical trials in these areas and what we do is we borrow from the knowledge of other areas of Medicine and in particular we're borrowing from well the whole area of clinical psychology in psychiatry we might be borrowing from fibromyalgia we might be borrowing from chronic fatigue those sorts of areas of medicine that have you know similarities so I can't sit stand here today and show you a series of slides that show the evidence for the efficacy or the lack of efficacy of medicines in this in this situation for either HSD or EDS there are no specific studies so we borrow the general evidence that said it's absolutely right that the medicines that are used that are generally available in the formula in the formula is for all conditions to use should be offered in the right situation for either as significant anxiety disorder as I was talking about earlier on today or significant depression there are some caveats to that and that is about making absolutely sure as you would for any medicine that you prescribe that there are no contraindications to their use in the first instance which can include things like interactions with other medicines that the person might be on known side-effects from other similar drugs either in the same class or other classes so the opportunities there absolutely to offer these as an adjunct to therapy to support anxiety and depression but they should not be the only treatment we've heard today of lots of other ways in which it's really important to treat these kinds of symptoms understand them try and manipulate the social environment that might be driving them trying to support the medical issues that might be driving them etc etc and you've heard some thoughts already around different types of treatments for things like post-traumatic stress disorder you'll hear more about talking therapies about mindfulness about physical treatments we've discussed diet and lifestyle all these things are fundamentally important they should already be in the list of things that are being done to Sue offered to support alongside the introduction of medicines now do I believe that that happens having said that no I don't I see too often that individuals come into the clinic where none of those other opportunities have been explored and they've been started on a medicine for anxiety or for depression and it's not working terribly well for them that said I see some people come in and it makes a big difference to their mood or the control of their anxiety so it is very much a spectrum that the medicine side of it I truly believe should be introduced as an adjunct to the for all opportunities for support and not just used in isolation unless it's an emergency right if you're in the middle of a psychosis of course you know but for the vast vast majority this is very much something that is part of our sort of more planned controlled discussion to explore what may or may not be suitable as part of your care and the problem really with with with introducing these sorts of medicines outside of the chance that they might work is that many people then experience lots of side effects people come into my clinic and they say well I'm on this medicine I don't know that it's doing me any good and I both these additional side effects on top of all of these other problems I already had and I've got a whole lot of new side-effects as well which I didn't have before and I'm just like I'm just not entirely convinced that it's doing me any good or they come in and they say look I've tried that and I've tried that I've tried that I'm not going back on that they've clearly got a history of being quite unsuccessful in tolerating a number of these different medicines you also as I've said before gotta be really cautious about about avoiding interactions with other medications we've talked about pain today many many individuals will be on different levels of analgesics these interact with anti-anxiety and antidepressant medications and the interactions can lead to side effects such as drowsiness poor cognition fatigue dizziness headache hands up all the people that without those pills have had all of those symptoms in the last week so do you know I don't mean it's it's got to be a balance between what we're trying to achieve in terms of controlling the anxiety and/or the depression but also the realization that these are it'll be careful with these with these medicines the other final if you like nail in the coffin that's props and perhaps not the best choice of words but it's um the anxiety and depression medicines can also cause anxiety and depression now that's a bit of a rub really that's that's really cruel isn't it it's harsh but it's true and these are all the sorts of things that as clinicians prescribing we need to be very aware of I think it's really important for those who are on the receiving end and considering the introduction of these medicines we're already taking them that these are very real potential risks okay so let's just have a look at the broadly at the common kinds of medications that might be considered in these sorts of situations so severe enough anxiety or panic attacks to consider medicines probably amongst the antidepressant medicines for anxiety are the SSRIs these are the selective serotonin reuptake inhibitors and I think many of you would be familiar either from your own personal use of these medicines or from others around you that drugs like flukes a teen and citalopram are in are in that group and they can be incredibly effective beta blockers can also be used propranolol and metoprolol are often used now propranolol is one of those theater medicines if you you know have to work on stage and you're anxious about things and you want to try and calm yourself down before you get on stage ten milligrams propranolol as long as it doesn't give you any side effects you can just bring you back down to to a good place I had one earlier and I'm good now but give me 80 milligrams of propranolol and I've probably been on the floor so they really do have their place and I'll talk about them a little bit more in a moment the other group that I think many of you familiar with is benzodiazepines and diazepam is that the is it's probably at the top of the list of those kinds of drugs and we'll explore that in a minute because certainly when I talk to my colleagues about the introduction of of a benzodiazepine I get a lot of no no no we can't go there but actually if you use it in a very controlled way it can be very very effective for short periods of time so we'll just explore that a little bit and then there are other agents that that might be used sedatives perhaps for sleep management even things like zopiclone might be familiar to you and pregabalin is in that list as well not as an analgesic per se but as a as an anti-anxiety medication used in low doses so let's just pick up on benzodiazepines and beta blockers because I'm talking to talk about SSRIs the antidepressant when I talk about depression and one of the really useful things about benzodiazepines is a very very fast-acting so if we need something that needs that where we need a quick action that we might use on the on the odd occasion this is a actually a really good class of drug and we use it in rheumatology musculoskeletal medicine a lot as an adjunct to the management of pain and muscle tension during acute back pain for example but we only use it for a short period of time a week or so to try and assist with the with the muscle tension it actually also behaves better likely to be more effective if you just take it as one-off doses and you take very short courses of it so just a couple of days maybe and then and then maybe several weeks later you might use it again so using it in a in a regular way may not give you all the benefit that you need and if you are going to use it in a regular way then we would very much want to be prescribing as lower dose as possible in order to be able to avoid some of the more complicated long-term side effects now that said this is not a good suitable drug for children and adolescents you also have to think about lowering the dosage because of in tolerances that can arise often with other medications and in particular in the elderly certainly should be avoided during pregnancy and it's also contraindicated in certain other situations such as severe lung disease liver or kidney disease so one doesn't enter into this arrangement lightly one has to think very carefully about the possible potential contraindications and side effects and these are the sorts of things that people might experience if they just can't tolerate the drug drowsiness difficulty concentrating headache dizziness vertigo tremor interactions with other medicines and it's addictive nature if it's used long term so you don't really want to be taking this for anxiety or depression if many of these other symptoms are already there and quite florid in your portfolio of concerns because the potential risk is that this is going to cause more issues beta-blockers then are also fast-acting so very advantageous we're getting that very quick action they can however cause lethargy they can drop your load your blood pressure they are associated if you use them quite long-term at high doses with night nightmares and some people get closing down of their peripheral circulation so you know if you're a Raynaud's softener you do not take beta blockers right it's it's just it's completely contraindicated and also asthma you should be avoided in a smoke the advantage here is that they're not addictive and also they're not there are no withdrawal or symptoms so stopping them is a relatively straight for process so let's think about antidepressants now and just to start with a very very brief how do they work so for all the neuro scientists in the room and all the molecular chemists in the room and everybody else I apologize because this is two lines that's probably related to a squillion years of your work and hey you know get over it neurochemical transmitters these are these very clever chemical messages that are basically passing between what we call synapse is between one nerve and another nerve and the chemicals as they pass across if it effectively sort of trigger electrical signals and send the message down the nerve there you go it's as easy as there and the common ones that we will all be familiar is I think from our reading and talking to each other at noradrenaline also called norepinephrine in the new terminology serotonin and acetylcholine and essentially what antidepressants are doing is they are either boosting the level of these chemicals within the brain or and actually in the gut I wrote an article many many years ago called AI meant to be sort of artificial intelligence in the gut because many of these networks and these chemicals are in the gut as well so you'll often see them used for gastrointestinal symptoms so boosting the level or prolonging the time that they are around in the area where they're supposed to be having their effect so in effect boosting the overall effect but because of the way they work they typically take about two to four weeks to take effect so very very few of these are going to have an instant reaction you're not going to get the kind of response you're looking for within a couple of days it's going to take a couple of weeks to a month and the kinds of agents that that are in our list of things that we can try the SSRIs so I mentioned those for anxiety but they're also primarily antidepressants so tala pram fluoxetine sertraline the serotonin and noradrenaline reuptake inhibitors the s in our eyes and the two sort of most common ones are Jalal Satine and venlafaxine now Jalal Satine is also an agent that's used in as an analgesic so some of you may be familiar with it's with its place in the list of things that we use to try and help with neuropathic pain and tricyclics amitriptyline nortriptyline and to sell a pen Lefevre mean these are all sort of similar agents and again amitriptyline and nortriptyline you may well be familiar with us as as analgesics in fact actually how many trips needs probably less used now as a as an antidepressant agent because there are quite a lot of side effects at high doses and the SSRIs and the SNRIs are better tolerated and then there are other agents that fall into other classes and one of the particular larger groups is the monoamine oxidase inhibitors and phenelzine and mclubbe amide are agents that some patients might might be familiar with but here's the list of side effects of antidepressants and the side effects of them are similar to withdrawal and this is one of the reasons why one again needs to be extremely cautious about entering into prescribing in this situation I am NOT saying don't take them because of all of the side effects there may be a really important reason why they should be prescribed and they should be taken but if you start to run into into trouble and think that actually they're not agreeing with you these are the sorts of things anxiety depression poor concentration acute confusion hallucinations sleep disturbance dry mouth palpitations headache dizziness nausea stomach pain muscle pain sweating restlessness constipation difficulty passing urine although blood sodium it's enough to make you anxious right so it's a long it's a long list and that's probably not the full list the point I want to make is they can be problematic and we need to understand them he'll think it's important about antidepressants is the is the whole issue of the dietary intolerance I'm not sure that many people realize but most of the pills are constituted onto certain types of chemicals and in this particular case there are certain agents that are actually have bound to them latch ELO's and so if you have a lactose intolerance citalopram imipramine nortriptyline our agents that you need to be careful of and gelatin is in some other products so if the dietary reasons either restriction or choice gelatin is not on your list and you just need to be familiar with these sorts of issues in terms of choice of medicines now just in the last couple of minutes coming off medication very important because there are a number of perfectly legitimate reasons why you might come off medication but because many of these agents have got what's called very long half-lives they take a long time to clear out of your system by half of their concentration of their dose so this is the dose in your body and this is that and this is zero then one half-life is there that could be days another half-life is there from the next one another half-life is there and so it can take many many days through two weeks for for the medicine to come out of out of your body and I've just realized as I did that I probably should have done it that way for you many many days to disappear out of your body the exits are over here and I thought I did that quite well I've flown too much reasons for coming off no longer needed obvious right but actually it's not a conversation that's had very often you know do you think you need this anymore no why don't we try coming off it it's not working too many side effects maybe want to switch and reduce interactions and also starting a family so you really need if this is the case you need to make sure that you're getting advice from someone who's very familiar with the process it should be a doctor looking after you and an advising you and you've got to understand the risks that there may be in reducing the dose and doing that too quickly reducing the dose or the frequency very slowly as guided is really important because as I've alluded to it takes time for different drugs to to clear the system sorts of withdrawal side-effects just as bad as the side effects that I put up earlier on I won't read through them because it's too depressing but they go on and on and on and they're basically all the things that you might expect of cold turkey and can be extremely unpleasant for people who do this too quickly so it would be very very careful coming off these medicines so in summary medications that have clearly have a very important place in managing moderate and severe anxiety and depression they do however need to be part of a much wider approach to treatment overall and adjunct to the other supportive treatments that we've been discussing none of them are without their own side-effects they all have risk of interacting with other medications there are different classes that you can offer for treatment and one class might suit somebody better than another so just because one doesn't work doesn't mean then all they're all going to not be effective switching or stopping should always be with guidance stop a medication if it's not working but again with guidance and if you couldn't withdraw completely from these make sure you never do it abruptly thank you very much welcome back all speakers please fill in Linda here and Alan thank you [Music] if anyone has messaged dr. Kim directly he hasn't been able to see them because he's been busy ahead all day so either resend them to the on the subject or stand up by microphone because we I won't be able to see those messages okay we'll start over here in the center thank you hi our workers are psychodynamic psychotherapists so what with childhoods obvious churches experiences and I also have HSD and I have a concern and my work about GP is referring clients for anxiety and depression and because I have what I have I'm able to work out that the symptoms some of the symptoms they get a physical are not a not mental so the concern is if I didn't know what I knew there would be something if is carrying on with the whole anxiety now I'm not saying there's no anxiety the end I'm talking about specific symptoms and when I said to my clients go back and see your doctor because that's not an anxiety symptom it's it from my I've been doing us 15 years knows I work out what's what they go back to the doctor I said you need to you need to go back and get a referral to find out what there says and they find out what it is in the comeback see ya it's some problem my stomach and it refers to EDS or HST so I just wondered if you've had those experiences and how'd you get the message 30g peas or any other mattock that they're causin problems there by just assuming that their clients have anxiety when they don't [Applause] okay that happens all the time that's really fun and because in assembly GPS are not so good with chronic pain medically unexplained symptoms at the with chronic pain at the best that they can do is you know often give pain killers so it's very difficult they're always looking for somebody to shed some more light on it and I suppose I think it's our job to think about okay you know we've done an assessment we think some of this is physical and maybe it's our job actually to contact the GP send a letter back and by doing that we're educating the GPS now sometimes I go where I work on my NHS practicing in Kingston you know I go to the GP kind of write seminars and I talk about can they give you a ets cuz I'm just trying to increase their their knowledge of it but in terms of their training they wouldn't had anything on EDS so I think it's again one of those things we're slowly educating people through lots of different means but I suppose we do have to take on the task of actually educating the GPS as well so absolutely concur it happens all the time every day every clinic that's that that story the and it should work both ways so if I see somebody who comes in and much of what we discuss is a realization that there are lots of psychological issues and maybe less on the physical then I should be able to just have a completely normal mature conversation with somebody from psychology or psychiatry wherever the supports needed to say we need some help and we need to work together to you know to support this person so what's both ways but the thing that I find the most distressing to be honest is when somebody is sent to a psychologist or a psychiatrist and the psychologists or the psychiatrist says fundamentally this is not a psychological or psychiatric problem it's a physical problem and when the individual goes back to see the doctors they completely disbelieve the report of the psychologists or the psychiatrist and can in you to pursue this Avenue of it being a psychiatric issue and I just do not understand that at all so that tells me that in those sorts of situations this experience and understanding of the of the physical issues is just completely lacking they just don't have the skills now I am the first person to say it's fine not to have the skills it is not fine to ignore the fact that you don't have the skills and continue to pursue that pathway it's completely inappropriate and it's bad for patients [Applause] but we've got a long way to go over had two experiences of talking in London through the medically unexplained Suton national group and also local psychiatrists and it's very interesting just seeing how the pennies start to drop when you present the story that we have and it does mean that we've got to do a lot of Education we do with the hmsa website we have a meeting in a box that you could tell your GP about because what we think I think we all agree that it has to start with GP education that's where it's got to be because a lot of the less severely affected individuals just want a diagnosis and don't necessarily need a lot of intervention they just want to know why have I got all these symptoms so I think the whole issue of somatization as a philosophy for psychiatrists is a big worry okay question for question for Alan in using beta-blockers how about using something more specific such as Antonello that is beta one specific easier on the lungs and does not cross the blood-brain barrier so it's non sedative the idea would be to break the feedback mechanism of perceived increases in heart rate increasing symptoms of anxiety further so who's been reading up on their beta-1 and beta-2 well I mean absolutely I mean 10 lollies in there on the list agents like metoprolol and basalt pro-law are often used because they're actually better tolerated for the various types of side effects that they can be but there's no reason why you can't use a 1000 there's a there's a perfectly reasonable beta blocker they've all got b21 activity and the first two have got some beta 2 activity so I don't know who asked the question but it's perfectly reasonable to use a 10 but it's thinking about agents that we use for beta blockade to control blood pressure in things like vascular EDS metoprolol and pathology and select all other sort of more typical ones to go for because they've got much more multi receptor activity and this is not a question but a comment that some people may find helpful in addition to the bact the professional body of counselors in Scotland is cos CA counselling and psychotherapy in Scotland they have a list of accredited counselors on their website okay bear with me please when I just refresh and can I just say that it's not very easy to stand up here and make this comment but I'm going to do it anyway because um there is a purpose for me the same as everybody else to be standing here and I want to tip it to the panel just exactly and what's your opinion on trauma induced by professionals to families out there that are struggling to get any help aim and support and I was in a position myself um after nine years of him looking for assessment for my son and he did tonight in the end and to be aesthetic and I turned out that my other two children were also tested and I've been diagnosed myself in the process four years ago I went through a traumatic childhood situation and where it was assumed that it was my mental health that was the problem and I've spent a long time trying to understand and comprehend how people can be put in the position that we are as parents when we are trying to get the best for our children and now in a possession that are frightened to do so because of things that have been done to us in the past when you know we've been in a position that we don't know how to handle it and you know I can't be quite an articulate person but I'm better writing things down and I am addressing things face to face so I really want to put the question to you that that as families out there that find that they're completely in a possession of being soul destroyed by prolonged outside agencies who appear to conspire but don't take ownership when proved wrong now I was in that position and did nothing about it because I have no strength left anymore I I will all I wanted was an apology I never got that but I now in a possession that all my tests excedrin show signs of high permeability and I'm in a possession now I am terrified to take it further because am I going to be subject more stress you know there's kids like they're they're suicidal but have taken their lives because of professionals and it's it there needs to be a time that this stops people need to start less than less than two parents you know because at the end of the day we know our children better than anybody that's that's my [Applause] um so absolutely and you know on the positive side that there there are also doctors like this and I think it doesn't it doesn't excuse that because there are terrible harrowing unforgivable things happening to families out there in the UK and all over the world and this is an opportunity to to mention that we are actually bringing together a roundtable of experts that will be meeting at the Royal Society of Medicine in London and April that are focusing on the pediatric issue that we are seeing all over the world we're bringing together policymakers members of the international consortium and members of the pediatric in international consortium to try and tackle this head-on because it's not good enough we need to make a difference we're taking that challenge on and we want to work together with everyone to try and make that better I liked it we're recording this right yes I would like your permission if we made to actually use the way you asked your question today and to take it to this meeting as one of the examples of a real story with real compassion behind it and I just like to we'll check afterwards with you if you're all right with that what I'd like to really thank you for asking that question it's so pleasant and I suppose in the meantime I think yeah the way you asked that question was absolutely great so I don't much start there and think about going to your GP and I've advised lots of people do it's all GP if you don't feel that your GP is helpful unfortunately I've had to ask a lot of people to try and change change GPS but really if you can find one health advocate who is on your side who can understand and try and get that person to do as much as they can within the system that would be really useful I know that it's not easy but that's just one thing that you can do in the mean time before all this other stuff comes around so however with that that kind of depressing notion of that's going out there something that is inspiring of someone that's tuning in saying I work as a physiotherapist and I want to help these patients live a healthy active independent life I often struggle to manage patients expectations what we can cannot do when I ask many patients to tell me they want me to take that pain away or a doctor has told them they need to go to a gym this must be terribly frustrating for patients how can we as healthcare professionals better manage patients expectations of treatment options of EDS and HST so there are people out there willing to help us which is great so how can we how can health care professionals better manage it and patients expectations of treatment options for a chest in your fellow professional better manage their expectations I suppose the first thing is to have a conversation with the person that you're working with your patient as to what their expectations are I think we spend a lot of our time looking at the current functional issues very symptom profiles thinking about our own expectations of our own interventions goals to be set are these goals realistic over a period of time what are the more long-term goals so I think if you don't start with those sorts of conversations it can be quite easy to go a long way down a pathway and have realized that you've never actually set a set of expectations I wonder actually whether how many people in the room have gone into the room to clinic to a consultation with no expectation hands up if you've gone in with no expectation that anything was going to come out of it yeah so you know works both ways so to work work with your with with your patients to identify the expectations and be honest about what you feel you can and can't provide and equally for for the patient's everybody in the community have in your own mind what you feel your expectations are okay under because if we think we can do more or try and boost you it's okay if they're over because if they're over we need to have a conversation and bring them back down to something that's a bit more realistic it doesn't matter either way you just got to have the conversation is psychotherapy still useful if the patient has little childhood memory yes if yes because there are ways of finding the memory so using EMDR or EFT there's ways of finding that memory I haven't talked about it here but also in to some extent here their therapy you can find the memory however finding the memory is not necessarily so important it's working with the present symptoms so the absence of the memory what the present symptoms and are there any other memories that can be remembered that feed into the problem and so with the CBT approach you're always trying to work with the here and now how can the person cope in order to relieve their suffering and distress in the presence yeah hi briefly my work background is in mental health and both both as a nurse and as a social worker 30 odd years ago I had what was thought to be a very minor accident and I went to see an orthopedic surgeon I was told can you bend over touch your toes yeah no problems I mean by this time I was experiencing severe pain I couldn't stand for more than about five seconds without blacking out as I said saw this orthopedic surgeon I was told no asked can I bend over put my hands flat on the floor yeah piece of cake no problems whatsoever the reports that I got from the orthopedic surgeon said any pain this woman think she might feel is probably a psychological reaction to her husband's death coupled with a little bit of paramedical knowledge as a result I lost my work workplace pension I had to give up work you know sort of 35 years later it's still impacting on my life because of the whole financial thing yeah you know it's just this whole transition from being a respected mental health professional she's just becoming this woman and it was it was just an incredible experience so yeah just wanted to sort of share that that's you know sort of it's not always good I'm afraid that I still see people in clinic who who come with those sorts of stories and there's a couple of things that come to my mind in your in your story one one is this this perception that somehow because you can move apparently more than normally that you can't have sustained an injury is is nonsensical equally we were talking about earlier on today how you can dislocate joints and it not be painful people who've got very unstable joints can dislocate their joints and it's not painful right so so there there are all these misconceptions around how pain and the mobility and the impact on function somehow should both track the high levels of pain clear evidence of reduced function so the other thing that I do somebody who's that kind of story the question those thing formal testement of the diagnosis that they made in the statement that they gave so that there was formal evidence that they've worked this through and I have to tell you that the vast majority of time the answer's no they did not and I have cases where people have been given various psychological diagnosis and there has been no formal assessment by their individual I love my orthopedic colleagues but I doubt very much that any one of them would ever have the time and very few of them would ever have the knowledge to do a formal psychological or psychiatric assessment in that way the problem is at the professional level when that's down on a letter by mr. so-and-so who's very important person in the local hospital we're in trouble and right now I spend my time getting those statements off people's letters because it leads to the kind of trauma that you've just described hey it was two questions after esteem and the first one was to do best they got and they psychological and emotional health and how what we eat how our diet can impact on that it was just to get the feedback from the panel and what they thinking that so this really brings us back this brings us back to the issue of the microbiome and you know everybody's got a different microbiome and everyone has a slightly different reactivity to different foods so it's a very complex area I think we just flew to say that we're just starting to understand it so it's breaking news really and I think you'll see a number of the speakers that come to the Yellowstone or Society but even back in Ghent we had a speaker talk going into great depth about this and that's available I think for you to to look at it's incredibly complex and we're only just starting to unpick things celiac carbohydrates all of whom are cell activation all of these things is I mean it's exciting times for those who are academic it's not so good for people to write in the middle of it working their way through and I think it's true that most of my patients work their way through to some kind of tolerable existence but it's very very difficult and you never know quite when you're going to bump into something unexpectedly that's going to knock you out for days so a very good question but no simple answers at lunch time an autist is about a third approximately that were for the special diet dietary requirements so don't know if a lot of people are figuring it out with himself that it's maybe having an impact and but they say q1 if that's okay and was about time management and it was slightly touched on and F this is an actual problem with certain people and within the UTS community and notice again there was a lot of lis commerce and I'm notoriously everywhere I go I'm late and I'll normally try and laugh it off but I system baddest and it causes a lot of problems and but it's real and whether or not this is like the actual physical physical challenges of the condition as it's constantly changing one day it takes ten minutes to have a shower the next day it takes and they were it's managing the time that we or as an actual condition of time blindness and it's just to see what the feedback when that was I would say the time management problems seem to be universal my experience of this particular population is that time management does tend to be related to physical mobility and physical limitations trying to get around so it so while we can think about time management particularly for people in relation to their work for my experience it doesn't necessarily pay than that because it can go back to your childhood but it doesn't tend to go much deeper than that in this halation so for my experience just it does tend to be because of the physical limitations around the body that's case I relief to hear that thank you hi I'm sorry I think one question I'd like to ask is I think a lot of people here would of spent a lot of money in the end trying to source the right doctors for their conditions and it's knowing when to stop when when to actually when to actually realize that actually we're not going to get any further with the NHS at the moment and we need to take this in our own hands and take a bit of ownership until we can then move everyone forward and bring everyone together and I was wondering have you got any advice what the best way is to collaborate everyone that you're trying to work with together as somebody who's worked in the NHS for many many years now works privately I have huge amounts of sympathy with regards to access to people and we see this both within within the doctor side of things the therapist side of things podiatry there are certain techniques that aren't even available on the NHS one of the pieces of work that we've been trying to do as several groups HMSA EDS UK the work we're doing with the others download society is at multiple levels work with the NHS to try and improve the understanding the commissioning of services so at one level we're right up there talking to very senior Commission at NHS England and another level where let's not call it levels in one place we're talking to the commissioners about how we how we improve services in another place people like Phillip are going around Kent and educating and training and bringing networks together we have the echo program that we're running which is this all teach or learn education program that anybody can jump on to from anywhere whether they're NHS or private it doesn't matter if masterclasses running up and down the country so these are all these are all ways that we're trying to sort of facilitate the development of much greatest skills within a multidisciplinary team does it take a very long time yes even in the private sector professor Graham still here it's yeah it took an extremely long time for us to gather our network together but we had to start somewhere and we're working closely with colleagues all over the country where they may be the catalyst for something fell it was the catalyst for something in Kent maybe just let's share your experience with what's happened in Kent in the last couple of years there's an example of what what can happen probably spoken to about a thousand health professionals in Kent including 200 GPS and we give them this clear sort of outline of the questions you need to ask the things to look for and the simple things that you can do in primary care like you know if you've got pots taken off or fluid more salt simple things that make big differences and things like mindfulness things like Alexander Technique which we have got in our pain clinic we've got Alexander teachers there and and kind of increasing the the toolkit and all three charities have been enormously helpful in in allowing us to say like go and look at this or there's this conference come to gainst you know what whatever it is it's out there one thing I did want to say about medical progress is that Alan and I have been through a period of time with a different condition known as rheumatoid which we've got much greater understanding about when we started certainly when I started in in 1980s there wasn't really an effective treatment for an infant you know for an incurable condition and that every every every clinic you would have three people in wheelchairs who just had totally destroyed join us the picture has changed over my lifetime in the NHS to something which is now eminently treatable and although we don't know enough about this condition there is cause for optimism because so much international understanding is and research is going on that I think it's there is cause for optimism for the future because things do change in medicine and I think to build an army you need one or two leaders and everywhere that we've been where we have successfully started to develop programs and networks there's usually been one or two people who have been catalysts and they might come from doctors or therapists or other people so if you know in your area of people that are sort of in the middle of in the thick of this but don't have a lot of support around them that's where we were 10:50 swim things are ok somewhere we're variable and build and one of the opportunities that we now have with the way we can network using virtual groups and everything else is that that is so much easier to do in terms of having conversations with each other colleague of mine took the master class on physiotherapy up to northeast England last week two weeks ago when we were at a staff meeting and she ran a full program there fantastic loads of people there that were grappling with all the sorts of things that we've been talking about today and I dialed in from five hours behind on the east coast of the states and joined in and we all had a really good conversation these things are easily done it just requires people locally to have an interest and if they are a catalyst get them get them to get them to contact us I just want to say thank you because I think it's about putting the whole families together we've talked a lot today about patient having that psychological support but I also think is very important for our partners too as well because you know they're not just thinking one they could be dealing with children as well and this up and down of you know the ADHD type of symptoms as well on top and I just want to say thank you for the whole day anyway [Applause] off the back of that I just want to ask as we're here in Edinburgh and this particular country has a pretty poor demographic of EDS clinicians as only advice you can give to patients in Scotland specifically people who are desperate I would say one piece of advice that I would give to anyone in Scotland and anyone listening from all over the world is tell your professionals your GP surgeries about EDS echo that we've set up because that was set up to create a thousand EDS experts by 2020 to buy this or teach or learn model that's free to take part in people can dial in from anywhere where they are in the world present their de-identified case studies that could be people like you sitting in this room to talk to experts to find out what the best care is for those people and through that process that's how you you create more experts because there's actually no such thing as an EDS expert doesn't exist you have rheumatologist geneticists gastroenterologist you no no no no no and they are individuals that have taken an interest in this condition and been willing to educate themselves and that's all we need all around the world more and more because we still have a small collection of these experts that have dedicated their careers often to this condition for that we're so grateful but we need many more and everyone can help us do that and build that army of experts because it's not impossible it just requires their willingness to learn can I tell you a little story about somebody who was brave enough to come down from Scotland see me and Kent and their initial consultation I was able to kind of outline certain things that she needed to do and I know that julia has seen her and so she says Mallika's and alice is in Edinburgh and I then reached out to my gastro colleagues because that was a big I said who do you know in Edinburgh who could deal with this and so by the so there was just two examples of kind of remote control and she's doing really well so I think as our network increases and a similar story from a ballet dancer who came to me who was going back to to Madrid or Barcelona and I said I know somebody in Barcelona there's a professor out there and we were able to plug that individual into the heart of mobility network in Barcelona so it's networking that I think makes a difference I've got I've got some kind of motor dysfunction so absolutely about the networking and we're growing and growing that network and part of the work that we're doing is is extending the international consortium with all of the expertise and it's an it's incredible once you do know I feel sometimes I feel like a Yellow Pages so people will come down to me in London and they'll say you know how we're gonna do this I actually already have many many contacts what I can't understand is why those contacts don't know each other locally and I think one of the one of the things that we need to try and do is get them networking closer together however you know however we can facilitate that so network network network we do know the people we know there are people up here because I'm referring people back up here all the time but the other piece is the whole conversation with NHS Scotland and commissioning and some of you will know from last year that this conversation did start and NHS Scotland was looking at some of its data which is the information it has on patients that are being transferred down to England for assessment and I know that conversation is still happening I did promise a couple of people who asked me a very similar question earlier on then I will email the colleagues that I've been to in touch with because they've spent time with me starting those sorts of questions and it was one of those catalysts so this isn't a clinical catalyst this is a service delivery commissioning catalyst and it started it will take a long time I have no doubt because these things do but there is there is this kind of undercurrent of work that's going on and to remind you all that we do have our medical directory and we do have people from Scotland on there so it's worth checking that out and can I just say as well if if you're in sort of this area or north north of England we're very happy if you're interested in finding out about the Alexander Technique we're really happy to organize some workshops for people to get together and find it find out what it's all about see there's a lot of people willing you know when we published the 2017 criteria there were 90 people in the consortium there's now 140 that's just in in two short years so it's it's growing it is changing we're all we've all got as a community PTSD of this whole process of 20 years of no updated mythology no real research no funding you know and there is hope on the horizon now it's just gonna take a really long time to repair that damage that was done over such a long period of time I've got time for two very quick more questions so up there and then to the middle hello um so I have a question regarding children I have EDS myself I was diagnosed three years ago and recently my daughter has displayed some symptoms which she was referred to early call rheumatologist at the sec heads in glasgow they said that she was a normal healthy girl with nothing wrong with her even though her collarbones desiccating her shoulders except other things and so I took her to see professor chiu Kansa in July of the when she was given a diagnosis they're going back to the GP from seeing professor chiu Kansa he had asked for some specific tests to be done on my daughter some extra bloods and the GP just seeing Herman reads professors later he said there was a marked contrast between the local NHS rheumatologist and professor Kansas later and that if I didn't mind could he RiRi fer her for a second opinion we were late yesterday and again we were met with the same sort of attitudes that she was quite normal they agreed that she doesn't need to physiotherapy of some sort but they said that there was a whole bus it was the correct word around EDS at the moment which obviously is what you're trying to create as a buzz and an awareness which we all know um but she said that she was unwilling to acknowledge that she had ETS she doesn't think she had it she wasn't going to label her with anything she doesn't believe in the baton score assessment for children and I'm aware of the statement they came out from the is that the British society of rheumatologist I know that there was a letter sent back from yourself and EDS UK so really my question as does anybody know why there's such a reluctance a2m diagnose a child's and and why there seems to be this problem that they don't have anything wrong with them and because an you know today is all about the psychological and emotional health and I feel that telling a child that they're perfectly normal and when my daughter's had to give up a dancing career except she can't do certain things what does that do to her mental health and to say that she's normal and what you know we don't have any services available and one of the letters that was written that I had a shopping list and they were worried about me trying to get a medical diagnosis for her and so as again we come back to the sort of child protection sort of issue and so it was really just to see whether anybody knew why the initiation rheumatologists are unwilling to to address this think it is a real problem I think it's probably the case that a lot of children who are hyper mobile then it goes away by the age of fourteen that's what the pediatricians are saying and that group who don't go on to get anything more complicated could be reasonably reassured but the problem is how do you know when it's an eight year old which way they're going to go and Alan and I spend a lot of our time at the end seeing 25 year olds who've had Clues all along the way from a that kind of pediatric contact and then an orthopedic contract contact with seblak Singh kneecaps and then an irritable bowel consultation where the gastroenterologist being fully investigated and then all the way on the background there's been something suggestive of mast cell activation and then they end up with with us so looking back it's easy to say well why why couldn't anyone have put this together I think that's a lot of what we're trying to do is get the the adult specialists at least to see those see those links but with with kids it's it's um it's another story I've got um two grandchildren and my daughter-in-law is very hard for mobile and my grandson who is three he's not at all half of my world but my granddaughter who is one is extremely hyper mobile now knowing what I know I'm not too worried about her because she's walking and she's really active and I suppose at the moment what we're trying to do is say don't protect those kids to the extent that they don't participate in exercise kids do better when they do more but it's a very complicated area we don't have the answers and you are right that peanut sir some some are pediatric colleagues don't quite get it right I've got one pediatrician in Kent who doesn't believe in pots where where do you where do you start it is complicated I think so these are definitely other areas that we want to explore when we start our rounds of discussions with our pediatric colleagues but we also have period pediatricians pediatric general physicians and and rheumatologists in our consortium and we are exploring all of these areas very much and and the message that I that they get across that comes across to me from them I think time and time again in particular is in the younger children typically say up to the age of nine or ten it can be very very difficult to be clear what the diagnosis is but that should never stop your treating whatever the problem is so treat the problem not the diagnosis is the sort of way forward and I can see the sense in that because it can be very difficult to know whether a younger child will go on to fully develop many of the features of say hypermobile EDS as opposed to the functional issues in there and then which may be very physical which would be very typical of themselves with high permeability spectrum disorder but actually if you if you spend your time almost concerned about the diagnosis and don't actually clock that you've got a youngster in front of you with a set of symptoms as having a functional impact then you've kind of missed the point because the problem doesn't go away now the other thing just to bear in mind is that actually we've had so the British society for rheumatology has has revised its guidance that it wrote in 2013 and that came out very recently and broadly speaking it's it's useful it's got lots of very sensible suggestions and it would be good to see whether those suggestions have actually been worked through to be confident that actually the said that the whole assessments been done the other thing to bear in mind is that the College of pediatrics of Child Health has actually endorsed the 2017 international criteria for a diagnosis of hypermobile EDS so if the signs are there and the diagnosis is endorsed by going through the criteria then that is the diagnosis and the issue that you then have is you're possibly working with somebody who doesn't know that level of knowledge so it's a it's a it's a knowledge gap okay thank you [Applause]

Channel: The Ehlers-Danlos Society

Views: 6,564

Rating: 4.5555553 out of 5

Keywords: Ehlers-Danlos syndromes, EDS, hypermobility spectrum disorder, HSD, Ehlers-Danlos Society, hypermobility, anxiety, depression, medication, mental health, emotional health

Id: UbUaBen5YTA

Length: 65min 18sec (3918 seconds)

Published: Tue Jan 07 2020