Sandy Butcher I’m Sandy Butcher. I’m  the Chief Executive of the National   Organisation for FASD. As an organisation,  we do lots of work to both prevent FASD and   to support those who have FASD. I’m also  mum to an amazing teenager who has FASD,   and everything I do is about trying to create  a better future for him and others like him. Dr Raja Mukherjee So, Raja Mukherjee. I’m  a Consultant Neurodevelopmental Psychiatrist   and Honorary Professor at the University  of Salford. I set up the National FASD   Service in 2009 and have been working in the  FASD field for over 20 years now [pause]. Sandy Butcher I think the first thing is  that they shouldn’t panic. They can talk   with their Midwife or another healthcare  professional if they have questions about   it. It’s always helpful if they stop when they  know, if they’re able to. If they are – have a   problem with alcohol and they need help, they  can be referred into specialist mental – or   specialist maternity services, for sure. I  think it’s really important to recognise,   too, that it’s not just on the person who’s  pregnant to stop, but people around them can   help them by also stopping and being aware of the  pressures that they might feel that they’re under. I also believe it’s really important that if it  was an alcohol-exposed pregnancy, that we need to   have some open and honest discussions and help  that woman understand how to recognise FASD so   that later, if their child is struggling, they  can help get the help early, through diagnosis,   if need be. National FASD has lots of  information about this on our website. There’s   also a group called DRYMESTER, that has excellent  resources to help people through the pregnancy. The most important thing, though, is to  understand that in the UK, more than 40%   of alcohol – of pregnancies are alcohol-exposed.  Many of them are unplanned. A lot of women don’t   yet understand the risks of alcohol in pregnancy.  There’s a new NICE quality standard that is,   hopefully, going to help ensure that they get  the – have these conversations throughout their   pregnancy with the maternity services, that  they’re given the right information and this   information’s recorded. But the overwhelming  thing is that we know, from talking with so   many different birth mothers of people with FASD,  people with FASD, that whilst it’s a challenging   discussion for people to have, if it was an  alcohol-exposed pregnancy, it’s always best   to know that and to put in place – to get the  diagnosis and to put in place the right support. Raja, I know that you have additional… Dr Raja Mukherjee So… Sandy Butcher …perspectives on this, yeah. Dr Raja Mukherjee Absolutely. So, I’d agree that  actually, this is a lifestyle type condition.   It’s something that people don’t just start  drinking when they’re pregnant. They will have   been drinking alcohol generally, and about 80%  of women drink, anyway, and they don’t recognise   the pregnancies, necessarily, straightaway. And  – but we also know that people who have drunk,   most people who stop early, because the brain  is going to develop throughout pregnancy,   is going to have a better long-term alco –  outcome. We also know that some people who drink   small amounts are vulnerable and may be affected  at any time. Some people who drink heavily don’t   have effects at all. So, there’s a difference  between individuals and so, we can’t predict that. So, whilst it is by far the safest  thing to say no alcohol is no risk,   we – if you have had a little bit of  exposure, stopping will always lead to   a better long-term outcome. And the likelihood,  then, is that if you can plan it, not drink,   that’s by far the best. If you find out you’re  pregnant and stop, there’s still a really good   chance that there’s no harm to be occurred. The  worst thing is to continue drinking throughout.   And the plan would be to have a healthy pregnancy  and a healthy baby, and that’s it [pause]. So, if you think that you  may have a child with FASD,   the first thing you’re trying to recognise  is, is there a history of alcohol exposure   that would make you think that? Not everybody  is going to have FASD, that’s the first thing. The next thing to think about is it’s not always  obvious in terms of physical presentations. Not   everybody with FASD looks in any way different  to others and so, therefore, it is important   that that isn’t what you’re focused on. The  way that it’s going to present to most people   is whether there are issues with learning,  issues with growth, issues with behaviour,   and that they are diverging, getting further apart  from what would be expected of a child or an adult   of that age. And so, that’s what would make you  think that FASD is possibly part of that picture,   but it has to be based on that background  history of alcohol exposure. Without that,   you know, it’s – we won’t be able to make the  diagnosis. So, it’s really important that that   kind of information is there in terms  of trying to get access to that [pause]. So, getting a diagnosis in the UK varies  depending on where you are, but initially,   the approach is always going to go to access  a health service via probably your GP. Now,   increasingly in Children’s Services,  schools can refer in for assessments,   as well, but primarily, the first point of call  for any health-related issue is going to your GP,   talking to them about why you have concerns  and then, trying to get a referral in. The most common place that people go to  is paediatrics, a Community Paediatrician,   who would see you, assess you. But as you get  older and the further into life that people get,   that that may change and it may well be a  CAMHs team or other neurodevelopmental team   that you would go towards, depending  on what your area has in place. But once you’ve got into that pathway,  it’s, basically, going with the information,   ruling out things. So, for example, clinical  genetics have a role in ruling out other   genetic disorders which are associated with an  intellectual disability or autism, and they’re   the common neurodevelopmental things that you  would look for. Once you get into the system,   hopefully, that would lead you down  the correct pathway to get a diagnosis. Sandy Butcher Except, Raja, we know  that doesn’t always happen, and from… Dr Raja Mukherjee No. Sandy Butcher …a parent’s perspective, or  a carer or a guardian, it can be really such   a confusing time, because most likely, as you  say, these young people are already being seen,   in various ways, in the systems. But one of  the things that I think everybody needs to   be aware of is that the new guidelines  now, they’re called – it’s from SIGN,   the Scottish SIGN guidelines, which are now in  effect, also, across Scotland, England and Wales,   they say that “If a child has neurodevelopmental  delays, then prenatal alcohol exposure should be   actively considered.” That’s the quote,  and I think, certainly in our son’s case,   it was the last thing they got to and not one of  the first questions that people had asked. And   I think that can really save quite a lot of time  if everybody is able to explore this in more open   and supportive ways. Because in our son’s case,  he had a lot of other diagnoses, but it wasn’t   until we understood that he had FASD, which is,  essentially, organic brain damage, lifelong brain   damage, and we had to understand that before we  could put in place the right kind of supports. Dr Raja Mukherjee And I think – I agree. I think  one of the challenges that you’re always going to   have is even if you’re in a pathway, which pathway  do you go into? The key that peo – professionals   will have is – I can guarantee they’re already  seeing these cases, but because we treat,   very often, pathways such as autism or ADHD,  we’re not thinking about the wider comorbidities,   what causes these things. We don’t investigate  that very often, and it’s highly likely that   people are already within these pathways  because they’ve been referred because there are   difficulties that they need help with. And it’s  then thinking through the differential diagnoses,   as professionals. What else could this be? What  else is involved here? Why does this not quite   fit what I’m seeing? And even if you just see  those people within your own pathways, then   you’ll start to recognise there’s a lot more of  it out there than people think there is [pause]. So, FASD diagnosis is one where you’re  looking at four broad areas. So,   you’re going to look at the facial and physical  features, you’re going to look at growth, you’re   going to look at the facial characteristics,  the neurocognitive characteristics, and the   history of alcohol. So, we need the history  of alcohol primarily. Now, the brain domains,   there’s about ten brain domains that people look  for, and you’re trying to put the information   that you collect together into all of them. Now,  people suggest that you need to find all of them,   but the reality is that there are  some that come up more and more often. We know that these kind of things are tested  for routinely in a lot of neurodevelopmental   services. So, if you are able to look for  those things, you’re able to get towards a   diagnosis. We also know that in the UK, having  done prevalence studies at the rate of 2-4% of   the population are likely to have FASD, which  is a very common, therefore, presentation,   and we need to be understanding and thinking  about it. They’re going to present to pathways   where a likelihood of the type of diagnostic  profiling that we need to do will fit into it. Growth is another area that sometimes  present with, but it can vary. So,   people are increasingly not focusing on  that, and again, with the facial features,   which is what a lot of people focused on, and if  you were trained bef – in the two – pre-2000s,   that’s what everybody was taught  was the most important thing,   we now know isn’t the most important thing  and only occurs between two and 10% of people. There was a study in the UK showed that  only 2% had full facial features of the   100% of people that were identified  in a cohort of nearly 13½,000 people,   to have FASD. And so, you can see it’s really  important that we don’t just focus on the face,   we focus on the alcohol history and the  brain domains and collect information   as much as you can, and then, develop the  expertise to know how to interpret that. Sandy Butcher I think it’s also important  that people understand that in the last   couple of years, there’s now, actually, diagnostic  guidelines that are in existence across Scotland,   England and Wales, and that hasn’t been the  case before. So, it’s no longer quite as – well,   there’s just no guidelines and so, that’s  got to be a huge contribution to it. There’s   also that with the NICE quality standard,  there’s very clear expectation in there   that one way that different areas, at least in  England and Wales, who are looking to improve   the quality of their services, they need  to be thinking about the importance of the   neurodevelopmental assessments for people who  have FASD. ‘Cause that’s often really important   to give the insights into that spiky profile and  exactly what kind of supports they might need. Dr Raja Mukherjee And the – and you bring up the  whole thing about the neurodevelopmental profile,   and there’s a concern in many places that you  have to have a Speech and Language Therapist,   you have to have a Psychologist, you have to  have an Occupational Therapist, as part of the   team. That’s not true. You know, I started as  a single practitioner who collated information,   and that’s what we do in using a medical model,   is that medicine – Doctors collate information  from different sources, come to a conclusion,   and formulate a diagnosis. And that’s a lot  of what we will already be doing, is looking   at the things that are already happening.  How many of these can be mapped onto that? And we’ve created a document called “The Time  is Now,” where we did a lot of that. We mapped   the different measures that you can do, and as  long as you can map them to three of the domains,   you’ve got enough to make a diagnosis. And a  lot of neurodevelopmental services and a lot of   neurodevelopmental pathways are already doing  this, and so, it’s not a big stretch to say,   if you see a case where alcohol is part of  the history, that’s likely to be an FASD case,   even if the outcome is ASD and ADHD, as  well, that you are getting the diagnosis,   have enough there to do it. And  so, it shouldn’t put people off,   but I think people are scared of it  because they don’t know enough about it. Sandy Butcher And I think one of the things  that’s really positive about the SIGN guidance   is that it says that we’re – if a child has a  neurodevelopmental delay, that “prenatal alcohol   exposure should be actively considered.” Rather  than it being the last thing that people go to,   it’s one of the first things. And the  other thing that’s in there that is   really important for people to understand,  is the – it outlines what are acceptable   proof of an alcohol-exposed pregnancy,  and that’s much wider than people think.  Quite often, they think that, you know, it  has to be a direct statement from the birth   mum themselves, but in fact, all the people  around the woman, you know, the – it just   has to be a reliable source, or maybe record of  some kind of treatment or things like that. So,   it’s – again, I think a takeaway of this  should be that people might want to just   have a quick glance over the new guidelines  and familiarise themselves with those [pause]. Well, that’s the big question, isn’t it?  And just keeping in mind that the families   that are trying to push for this diagnosis  and the support that follows, are living,   really, a pretty challenging life, and so,  they might not all have the same level of   resilience or mental bandwidth to try to  push for a diagnosis in areas. ‘Cause not   every place in the country right now has  a pathway identified for diagnosing FASD,   even though all the major public health  bodies are saying this is important,   and Commissioners and Health Boards, everybody  really needs to get onboard with this quickly. But I would say the advice that we give from  National FASD is to encourage people to just   keep at it. If they raise this issue, you  know, “I think this was an alcohol-exposed   pregnancy and I think my child might have  FASD,” they have to keep in mind that the   first or even second or third person  they talk to, practitioner, you know,   person who might have medical degrees dripping off  the walls, they might not understand FASD or have   the latest information because this information  has changed radically in the last few years. So, I think people should feel empowered that  right now, all of the major public health bodies   recognise the importance of the FASD diagnosis  as being key to the long-term outcomes for that   person. And they can quote those documents  back, they can work with others to push for   the change that’s needed locally, they can  contact National FASD. I know practitioners   who are trying to create change with logical  content, your clinic. There’s – it’s just to   say that how it’s been up to now is not  the way it’s going to be moving forward. Dr Raja Mukherjee Hmmm hmm. Sandy Butcher And the people who watch this  video and who have some of this information,   are armed with the most up-to-date knowledge about  the importance of diagnosis, and there’s public   health statements out there that they can use to  continue to push for the need for assessment if   they’re being – if they’re getting some old-school  pushback. A lot of people say, “Oh, the young   person doesn’t have the right face to have an  FASD diagnosis.” Well, that’s not – you know,   that’s just been debunked and it’s less than 10%  of people have that face, the facial features that   they’re talking about. Or we hear all the time  that people are being told that “There’s no point   in having another label” for their child, and as  Raja has explained, that’s not true, because it’s   the first step to putting in place the right  kind of support for the young person’s future. Dr Raja Mukherjee I was going to say that  one of the things that I’ve come to learn   is before the 2000s, we used to say “The  face was everything,” that was what it was   about. That’s what you used to look for. So,  anybody’s who’s been trained pre-2000s may   well have been taught that. Since the  2000/2010s, we’ve started to realise,   actually, the face is such a small part of  the presentation. What it represents is a   more severe end of the spectrum, where you have a  narrow window, moderate to severe presentations,   but those without facial features have a much  broader presentation, from mild to severe. And so,   you may not look any different, but the severity  of the presentation is going to be there. So,   there’s a lot of changes and there’s  a lot of knowledge that’s changed. The other thing that I would say is that in 1984,  they drew a picture of the classic face of H – of   FASD and it hasn’t really changed. What’s  changed is the technology that goes aside   the assessment. So, we now have 3D imaging  with AI computer technology that helps us   to identify and more accurately mark landmarks  on the face and be able to measure accurately   and work out what’s going on. We couldn’t do that  20 years ago. So, the system and the science and   the whole field has moved forward massively in  that period of time. So, what you knew before,   as Sandy said, is not what we know now. So, it’s  really important that people get into the system,   think about it and then, change the pathway  so they have a better quality of life. Sandy Butcher I think it’s also  important to just remind people, too,   that the reason why the face develops in a really  short range of time early in the pregnancy. So,   maybe mum had morning sickness and couldn’t drink  during that window, but might have had alcohol,   you know, might have continued with an  alcohol-exposed pregnancy after that, and the   face isn’t actually indicating – you can not have  facial features and still have very severe impact… Dr Raja Mukherjee Yeah, absolutely. Sandy Butcher …on the way the brain developed.   It’s not an indication of  how severe or not severe… Dr Raja Mukherjee No. Sandy Butcher …the cognitive impact has been. Dr Raja Mukherjee And that’s a  key learning point to take away. Sandy Butcher Yeah [pause]. Well, I think it’s  really important, first of all, to just understand   it’s a brain-based condition. If there’s  nothing else that people take away from this,   understand that we’re talking about underlying  organic brain damage. The brain didn’t develop   properly because of the interference  of the alcohol, and the way that the   brain processes things, whether it’s sensory  things, thoughts, cog – you know, cognition,   it just – it affects so much that is hidden.  It’s called a hidden disability because of that. And so, what we had to do is – and what we had –  the general advice is out there, is to just slow   everything down to let the processing happen,  and that can take a really long time. They say   that somebody with FASD might need 30 seconds to  process something. And if you’ve ever watched Dora   the Explorer and know how long those pauses they  put in there, which are only a couple of seconds,   to help kids process things. If you’re thinking  about giving somebody up to 30 seconds or more   to process information, that’s a big change  in parenting, it’s a big change for schools.   It’s also incredibly important to adapt the  environment and the expectations to the right   social and developmental level. Raja can talk  more about why that’s important in a second. And I also really believe that it’s key in  all of this is we have to help them understand   their diagnosis and what strategies  help them, so they can focus on the   strengths and they can begin to become  self-advocates. Every other condition,   we help people understand what’s involved with  that, but I know young adults with FASD who,   even ten years after they had a diagnosis, not  one medical professional would talk with them   about it. I know way too many people who end up  in the Mental Health Services and they are just   not understood in those services. It’s so exciting  that this recording is being done for, hopefully,   people who are in the Men – Children and Mental  Health Services will learn more about it. And as Raja said before, you know, key  to the support for somebody with FASD is   having in place a care management plan, and  that’s been suggested by NICE as one of the   five most important things that local areas  can do to improve the quality of care. And,   you know, that just holds  all kinds of possibility,   even though I’ve yet to meet anybody who can  outline exactly what a care management plan is. Dr Raja Mukherjee Hmmm. Sandy Butcher But we know that there are  people out there who are working on that. Dr Raja Mukherjee Yeah, I’m just going  to add a couple of things. First of all,   when we – Sandy talks about the social and  emotional level, this is because people with   FASD are developing at different trajectories  and so, they have a slower rate of development   compared to normal neurotypical individuals. And  so, the gap will get bigger and so, you need to   think about where in their developmental level,  where in their journey are they? And not just   look at chronological age, and we do that too  often. We say, “You’re 18, you’re an adult. You   need to make all the responsibilities,” but  they may not function in that way. And so,   it’s thinking about that in that – those terms to  try and help them and adapt to that kind of level. The other thing that – the big thing that I’ve  seen is, if we’re going to keep people well and   safe through childhood, into adulthood, we need  them to understand themselves what they do well,   particularly, where they need to ask for help, to  scaffold them, and also, what to do to keep them   safe. We know that this is a very vulnerable  group. We know there’s a lot more adverse   childhood experiences that they experience through  life. They know that there is going to be greater   vulnerability to be involved with the Criminal  Justice System and – because of the nature of   their conditions being missed. And that means that  if we don’t help them to understand themselves   early, those negative outcomes are more likely,  whereas where – if we do help them, you shift   the narrative, and all of a sudden, you end up  with positive outcomes, and that’s what we want. The other thing is there is an inherent  stigma to this which you can’t avoid,   and so, there’s something about saying, well,  actually, people are coming to you because they   recognise there’s the problems. Whether  it’s a birth parent or adoptive parent,   they’re not coming to you because everything’s  rosy. They’re coming to you because there’s an   issue and people often will need support and help  to deal with that. Rather than burying people’s   heads in the sand and saying, “This is not  something we’ve got to address,” understanding it,   helping them understand most people are  not doing it because they want to harm   their child. They’re doing it because it’s  a lifestyle issue, which has just happened   to have caused harm, and they weren’t given  advice properly, which often is the case. If we go back – it was only 2016 that the  guidance finally changed to avoid alcohol. So,   anybody who’s aged eight or more will have  been and lived in an era where the guidance   was – it had – parts of were safe to drink.  And so, there are guidelines where governmental   situations will have, potentially, put some people  at risk, and we can’t do anything about that. So,   it shouldn’t be about the stigma of the  individual. It’s about understanding, helping   and supporting them through that so they can get  the best for the child, because ultimately, it’s   about shifting the narrative to a more positive  outlook, not talking about the negatives [pause]. Sandy Butcher There’s actually a great deal  that can be done to help a young person who’s   struggling in education, and while it may  take years sometimes to get the diagnosis   and to get these assessments, I think  it’s really important that people – I   wish somebody had said to us as we started  the process of getting a diagnosis, you know,   “Whether or not it’s FASD, here are some  strategies that can help you as a parent,   and here are some strategies that can help in  school.” Because if those strategies are put   in place and it turns out it’s not FASD, they’re  still going to help those young people, anyway. But they are slightly different than some  of the other strategies that exist for   other neurodevelopmental conditions, so  it is important that people understand   this is FASD and not autism or ADHD or some  of the other conditions that are out there.   And the reasonable adjustments that can be  done are – can be as simple as, you know,   having someone not have to walk through  the crowded hallways during breaktimes   and lunchtimes and giving them a pass to be  able to get to the front of the lunch queue.   That’s a simple kind of thing, but there’s al –  there’s just – there’s so much that can be done. But if they’re based on the assessments, this is  where it – you know, those assessments come in,   if you can understand that this person  has a problem with receptive language,   that they might talk the talk, which happens  all the time with people with FASD. They come   across as being very engaging and verbal and it  sounds like they’re understanding, but really,   we know from the assessments that they’re not  understanding what’s being said. You know,   that’s something that – so, having their supports  be guided by the assessments is also key. And I think that it’s really important to have the  schools under – and the colleges understand that,   you know, the typical kind of consequence-based  strategies do not work with people with FASD. That   there are – you know, if you had an incident  on Monday and give a detention for Wednesday,   that’s not necessarily going to work  with somebody with FASD. Any kind of   consequences need to be immediate, they need  to be positive, they need to understand that   they might’ve resulted due to a lack of  impulse control that escalated because the   young person might not have had proper breaks  and supports in the rest of the day. Sensory   breaks can be really useful, breaking down  information, giving visual cues. You know,   we’re not going to, in the time that we  have, be able to give all the supports. But I also think that in many cases, it’s  important that the families are supported in   getting in place specific support and education,  whether in England it’s an EHCP, or in other parts   of the country it might be called a Co-ordinated  Support Plan, an Individual Development Plan,   a Statement of Special Educational Needs.  Whatever it is, there are – you know,   people who have conditions like FASD have a right  to access supports in education, and too often,   they’re turned away because in a primary setting,  the schools believe that they can cope with what’s   going on. And as Raja explained, that may be  true in a more smaller, nurturing environment,   but I really encourage people to think ahead to  what’s going to happen once that young person hits   secondary school and some of those tests that are  so inflexible are coming down the line. You know,   we really need to be thinking ahead  about the next stage for everybody. So, I guess the short answer I would give is  “What can be done to support a child with FASD in   education?” is quite a bit. But the people around  them need to understand, when you’re talking   about FASD, that this is – we’re talking about a  brain-based disability and that young person has   rights and should have access to appropriate  supports in the educational system [pause]. Dr Raja Mukherjee So, the key issue, if somebody  is having a mental health crisis, you deal with   the mental health issue. Don’t use – don’t get  into the trap of diagnostic overshadowing and say,   “It’s all the FASD, we don’t need to treat  the mental illness.” Because actually,   what the neurological-based situation you  have with somebody with FASD, because it   is a brain-based disorder, that it increases  their vulnerability. They’re more likely to   experience adverse childhood experiences, adverse  environmental factors, which also increases their   risk of developing a mental illness, depression  and anxiety, the most common ones that you are   likely to see. And if that is a significant  issue for them, then it is worth treating it. The same with families. If there is a issue for  families where there is a mental health issue,   they need extra support, well, get them the  support if that helps them, because this is   a biopsychosocial model. And if it is about the  families being put into a situation where they’re   not getting support, which is leading them to  developing it, and then, the treatment for that   is giving them the right support. But don’t ignore  it, is what I would say, is make sure that you pay   attention to it. Don’t get – fall into the trap  of diagnostic overshadowing and saying it’s all   this thing, it’s not. Because actually, it’s more  likely to lead to these mental health issues in   somebody where FASD is part of the picture because  of the challenges that it sometimes brings. Sandy Butcher Raja, I would – wonder what – how  you would respond. So, we hear lots of times from   people who are being told by their local services  that either people with FASD don’t have access to   those services because they’re for autism or  learning disabilities. That’s one thing that   we hear all the time, even though there was  a Local Government and Social Care Ombudsman   ruling in – on the education side, that said  they couldn’t gatekeep the – a local area in   West Sussex couldn’t gatekeep their schools  and they needed to provide services for   somebody with FASD and allow them access to those  services. But that’s – it’s constantly – we’re   constantly hearing people saying that. And  they’re also being told, including by CAMHs,   that they’re – the people with FASD are “too  complex” to be handled by their service. So, what we have, we end up sometimes  with people who have just been failed   by education. They’ve been failed in getting  the diagnosis. The families are at crisis,   at breaking point, and then, when these  young people present as sometimes, horribly,   being suicidal, or really, you know,  at the end, they’re being turned away   by the services that are meant to help  them, and I – how can we change that? Dr Raja Mukherjee The key issue is education  professionals, partly why we’re doing this.   There is a greater degree of mental health  presentation in people with neurodevelopmental   disorders across the board. We know that 90%  of people with FASD will develop some form of   mental illness within their lifetime, 70% of  people with autism do, a huge proportion of   people with ADHD do. That ADHD and ASD are  outcomes of that underlying brain damage,   which FASD is one of the things that can cause.  So, there is a relationship between these that   many people just don’t understand, and you only  get that understanding through education. And   which is why not falling into the trap of saying  we can only do one or the other is what they’re   doing. Whereas actually, if they understood the  context, they would be saying, well, actually,   it’s likely we’re seeing these cases already.  You know, we may – we’re not identifying them   because we’re not thinking in the right  way, but if we started to think that way,   we’d see, actually, that explains why this  person is more complex and isn’t responding. But can they be complex? Yes, they can, because  there’s a lot of things going on, but that doesn’t   make it impossible and it doesn’t mean that  you have to do huge amounts of extra work,   because they’re often doing the type of work that  they need to do to understand the individual,   to then manage them. So, it’s about doing  things, recognising it and putting in   place a management plan through what they’re  already doing, and that comes through training,   it comes through supervision, it comes through  expertise, and that develops with time [pause]. Sandy Butcher Hmmm, they can become advocates  for change, and I think that now is maybe the most   important time to do that. We are just in what  one person’s called the ‘sweet spot’ for FASD in   this country, where suddenly, after way too many  decades of not having official attention on it,   we’ve had now all the major public health  bodies coming onboard and saying that,   very clearly, you know, there’s the  Department of Health and Social Care   FASD health needs assessment. Scotland, by the  way, has been leading on everything, you know,   they’re ahead of us, but then, still have  some trouble getting things rolled out. But the major public health bodies  are on side. As we’re saying,   it’s the training that’s been lagging behind  on this. So, if families or practitioners go   armed with some of this new information, they’re  willing to work in a co-operative way with the   overburdened services in the area and help explain  how this is actually a benefit to those services,   because these families and these people  are already in the systems and probably   dragging down and costing money because  they’re being given ineffective strategies,   because it’s not being recognised that they  have the underlying brain damage of FASD. There’s lots that can be done, and Raja and I were  co-Chairs on a series of roundtable discussions   that led to a publication of a report called  “The Time is Now Ramping up FASD Prevention,   Diagnostic and Support Services.” And that’s  140-page document that includes – we had, what,   more than 60 practitioners and experts involved  in creating that. There’s lots of information   in there, very practical, hands-on information in  there, that can be referenced to whatever part of   the journey, whether it’s a prevention campaign  or, you know, a Paediatrician who’s trying to   push their local area to get a prevention or a  diagnostic pathway in place. There’s just lots   of information there. Ra – you know, Raja, I’m  sure that you have more information about that. Dr Raja Mukherjee Yeah,  yeah. So, I was going to say,   the NHS England health needs assessment  came out in 2021. That described pathways,   how they can develop, and we talk about local  areas being supported by regional teams to   improve that hub and spoke model of service  delivery, and that’s starting to happen. So,   there are areas around the country that are  starting to look at their own pathways, how   to set up that, how to be supported whilst they’re  development, and those things are happening now. Now, the nice thing about the NICE quality  standards, which came out the year later,   in March 22, started to say, “These are the  things that you have to do,” and because   they’re measured against them, you’re starting to  get that change. The problem is they don’t exist   everywhere yet and these things will, hopefully,  come in the next few years, but in the meantime,   if there isn’t a support in your local area,  then, you know, we’re an NHS clinic, every area   is required, if they don’t provide a service, to  support and fund referrals to places that can. And so, there’s a thing called Individual  Funding Request, they can get access to   that through the GP and the local ICB Boards, and  they can be referred through to us if needs be,   and it meets our criteria. But really, what  you want to do is we don’t want to be seeing   people from all over the country. We want to  eventually be our regional service and don’t have   to go – people travel so far, because everybody  should be seen local to them. And so, ultimately,   at the moment, we’re in that transition  phase between a growing understanding,   working out how the pathways work, supporting  that development, but in the meantime,   if they need an assessment, then referrals can be  made to other services, including our own [pause]. Sandy Butcher There’s lots of places to go now,  and as Raja said, the – it’s one of the things   I feel most hope about, because when our son  was diagnosed, and that was only eight or nine   years ago now, there really wasn’t very much  out there in terms of information training or   support. Obviously, the National FASD website  has a great deal of information for families,   for adults with FASD and also, for all different  sorts of practitioners. We’ve got separate   sections on there for Social Workers, for people  in maternity services, for practitioner – medical   practitioners, for educators. There’s  a lot of information on that website. There’s also the fasd.me website, where there’s  information and resources there that have been   created to help children and young people  understand their diagnosis, to learn from   others with FASD, because most people with FASD  have never met someone else with FASD. It add – it   talks about different sorts of strategies to help  cope, and also, highlights the strengths of people   with FASD, because there’s – in any every single  person with F – I believe with any – every person,   everywhere, there’s always a strength. There’s  always something that makes their eyes light up,   and the trick is to find those. So,  the fasd.me website is really helpful. There are groups across the UK that have joined  together in what’s called the FASD UK Alliance.   These are groups that provide awareness raising,  support and training. Obviously, National FASD   provides training, as well. We have some eLearning  that’s available and more that we’re rolling out.   So, there’s a great deal of information out there  and then, there’s also a wonderful network for   practitioners. There’s people like Raja and many  of his colleagues who have been leading the way in   trying to push for change in different colleges in  the communities, and I would say to anybody that   there’s always someone out there who can help  you if you’re interested in doing more on this. Dr Raja Mukherjee I’d add just two more  things. One is that we’ve been going around   doing training for different areas as they  develop their services, because you need to   have an expert who comes and trains you. And so,  we’ve been going around various areas and doing   specific training to those people when they’re  setting up services, so that sort of thing is   available. Just need to contact us and we can  discuss that. There are also several books,   including one that we’ve written, which is  designed for practitioners to use when they’re   getting new to the service, when they’re looking  new at the area, to go back to and refer to,   and Sandy’s been doing a series of book clubs  around that. But it’s trying to help and support. So, there is the resources out there  for people to use, to go back to,   materials they can use to guide them. The Time  is Now document, which Sandy mentioned before,   is another one which is a good practice  guidance looking at a whole range of areas   as people can look at to try and implement and  interpret the guidance. Because sometimes the   guidance is written in a way that is difficult  to navigate, whereas The Time is Now, kind of,   cuts through that a bit and says, “Well, that’s  what the guidance is, this is how you deliver it.”   And so, there is a few things that practitioners  can go to, as well, that will help support them.