Editorial Note: Following the Montelukast, Fluoroquinolone and Psychotropic post, there is a comment from Heather Roberts to which David Healy responded. The edited comments are here. This led to an email exchange between HR and DH which follows. Along with Wendy Dolin and her MISSD website (see above) and Billiam James’ Akathisia Anthem, Heather and her husband David have done more than almost anyone else to raise the profile of Akathisia. Their work will culminate in Ollys Friendship Foundation. This is a marvellous achievement but is it the right way forward or what needs to be done to help it achieve Heather’s goals. This post connects with the Something Happened posts on DH org.
That’s what happened to my son too. He died, mainly because his akathisia was so terrible and unbearable.. he felt he had gone incurably mad. He was however highly intelligent and realised that the social workers and psychiatrist he spoke to when tentatively expressing his suicidal thoughts, as we are all, laughably, implored to do, didn’t have an inkling of an idea how to help him, rather instead resorting to ridicule and belittle him, so he decided death was the only option. He wanted to remove himself from a hopeless situation and in so doing give us, his ever loving parents, our lives back, free from battling to get help for him. ….
His dad and I, almost by default, have become core members of a Suicide Prevention Group and have the opportunity to speak at a Suicide Safer County Council, CCG, clinicians and many others’ convention this coming week. I’m planning our speech. It will cover the following: what happened to our son, what could have prevented his death, what change we want to see NOW to facilitate such change. There are 4 families in this, we are the only RoAccutaners. We are however all agreed that when as carers we tried to help,our young, we were out in the cold. There was no compassion for them or us. ‘If you want to kill yourself, there’s nothing we can do to stop you, you are free to do it’
How to cope when a loved one suffers anxiety expressed as a desire to die? My suggestion is: a three tier system in place.
1. Immediate compassionate response such as offered by the charity (independent of the NHS but with enlightened listening psychiatrists on its books if needed) SUICIDE CRISIS of Cheltenham, aiming to open other branches in other regions, results have been so good.
3. At this more informal centre, mostly staffed by trained volunteers who genuinely love people and care about them (this qualification VITAL) where creativity and supportive companionship offered till patient feeling stronger again, but with option to come back on visits if suffering any occasional blips as their confidence grows and mental unwellness recedes. It goes without saying that akathisia be checked for, from the start, and medication use avoided where sensible and possible, tapering advice given and monitored.
I have a problem with this. Unless, someone diagnoses what’s happening as a toxic effect of a drug and this shapes what happens next, then all the Care is the world is not Care and is further going to imprison the person in trouble. Again and again I hear of situations where Carers in settings like you describe get sacked if they dare say I think this guys problems are being caused by his drugs
Main thing possibly is to get the policy makers to listen without pre-conditioned closed minds, so, come in at different angle that they are not expecting. Awful to say it, but true, that people like us, bereaved by suicide, are granted opportunities to talk in such forums because we are in a club no one ever wants to find themselves in, losing one’s child to suicide is the worst thing a lot of them can imagine.
We explain, no, there IS something worse. It’s seeing your young struggling in agony with AKATHISIA, sparked off by prescribed meds, hearing them begging you to kill them to end their pain, and having nowhere to turn for honesty about what’s going on; it shocks them to hear me say I was glad he’d died because one wouldn’t let an animal suffer anything like as badly as the people do with unrecognised AKATHISIA. I couldn’t finish him off myself but that’s not to say I didn’t think about it when he was near the end, when he had no peace even to sit down or dare to sleep without fear of horrific nightmares. When you love someone unconditionally, you want them not to suffer. Death is an end to suffering, if there is no other way out. What we have to get people to take on board is that, like you say, all medicines are POISONS and not to be dished out as such panacea for mental or physical discomfort. They can cause something even worse than death, and we have to wake up to this.
We see on BBC ‘Breakfast’ this morning that they are featuring children in primary schools self harming and suicidal, and teachers apparently wanting mental health professionals rolled in to address this. More Gov funding being discussed, which will doubtless mean, more very young kids on medication. Result will be things getting even worse. Copycat self harming. Pharma will be queuing up to offer Gov bulk bargain deals on kiddies’ antidepressants to save NHS money on care, like they did with statins.
Olly wanted to make a difference. His giving up of life could do this. We can talk and do about him and his death and what caused it. It shocks people, but they listen.
We are completing his Arts & Crafts Centre, with money he left, in accordance with his wish, to work with kids and teachers like I’ve done in schools since 1984. Help to build resilience, generate happiness through creativity, distraction. Get some reality and hope and good sense across. No need for drugs for everything. If we support carers there too in other sessions, they can help those they care for without drugs. We need to show that this works. We’ve already demonstrated this works for almost 2 years working as volunteers at the Horticultural Therapy Centre by setting up , funding and running the Art Group. People there who were on antidepressants have decided to come off, and are better for it. But to be fair, they hadn’t been started on them long, they changed their minds in time. Others will never start. Because they read RxISK with their families and they then understood better what could happen.
These are just our ideas in answer to your words about what to do to really make a difference. . It’s slow, but it’s working. We will never give up. Our memories of Olly’s suffering are so strong. We are doing what we should have done for him, and would have been empowered to do, had we discovered RxISK in time.
Thanks for this note. However I don’t see this making a difference for the better. The point you make about primary school children shows that whatever it is is getting worse – and I hate to say this I have to ask you, just as I ask myself, are we, am I, helping make it worse. The very act of talking about a child who has committed suicide raises the emotional temperature that leads to politicians and everyone else reaching for a Fix. And the media roll in and will transform you and opposition to drugs into an Anti-Vaxxer as it were.
I do not see the BBC, or the newspapers, or any politicians or bureaucrats in the Dept of Health, editors of our major medical journals or presidents of Colleges or Associations, or anywhere else able to understand or willing to do what needs to be done. It needs someone who people will listen to tell the wider public – look guys we have a rotten barrel problem – everything we have depended on is ghostwritten junk with no access to the data.
They would also say there is no point blaming this on Pharma – what about the craven doctors who refuse to tell people they operate on the basis of ghostwritten articles and refuse to demand access to the data when they are in a position where they could extract it from pharma by refusing to prescribe drugs for which they don’t have access. What about that craven body NICE who know exactly what they have been doing? What about those once brave BBC, NBC, CBC, and newspaper journalists from the New York Times to the Telegraph who were great with rotten apple problems but now, just as the Pope did with the Holocaust, don’t speak up about a rotten barrel problem for fear it would be worse for them.
Until then all efforts to produce a more Caring situation will inevitably default into people who are distressed being put on more of the very meds you are raising concerns about. Care involves difficult calls – telling people about akathisia is not a difficult call. Telling people everything in most major medical journals is ghostwritten is, and telling them that regulators from FDA to EMA to MHRA don’t get to see the data is difficult because after you say it “they” don’t look at you with sympathy, they think you’re nuts.
You see a few people saying they wouldn’t take pills and think you are winning – you will keep thinking that when we get to 50% of the population taking them. Everybody who is concerned and trying to do something deludes themselves into thinking things are getting better because they hear some echoes in an ever smaller chamber. They’re not getting better.
Heather’s presentation is HERE.
Agree most of this stuff is societal, we don’t need these kids being referred to psychiatrists, counsellors, to CAMHS and all this stuff, we just need fun clubs and pursuits for kids to get together and do. Youth Clubs have gone, there’s little time for art, writing, creativity in schools, and yes, as you say, endlessly batting on about self harming and suicide makes more and more do it. Olly never self harmed except once before he died, and only because another patient told him it helped to ease the pain. And it did. In a way. Apparently. But it’s becoming a way to get attention. And all these celebs writing books linked to their own ‘mental illness’, Monty Don, Susan Calman, Bryony Gordon, it sells books like there’s no tomorrow. But mostly they promote medication. Bryony loves her antidepressants and she chats away cheerily about it with Prince Harry etc. Calman’s books are quite good, Monty Don, well, all smoke and mirrors. ‘mental illness’ is this decades passport buzzword.
Every footballer, every singer/songwriter, on and on. If you are not connected with it in some way, you are not interesting…almost every tv programme, documentary features it. But no one, not even Sarah Vine in her efforts with BBC (good luck with that…) comes out about AKATHISIA. Had Katinka not done her book, I’d never have known about it.
As to the rest. We need to focus attention on as normal life as possible and making the best of it. I remember Dr Antony Daniels writing a good piece in the Mail about accepting that no one’s life is perfect, live with it how it is and try find pleasure day to day in small stuff. Be a pessimistic type, because life is tough. If you watch a film like ‘I, Daniel Blake’ you can see how hopeless and helpless people feel, and no drug is going to help this except inducing oblivion.
All I’m saying is, we have to push training on AKATHISIA, so I’m sending your our document, you don’t have to read it. As I began, I asked the room who had heard of AKATHISIA. Only one, the CCG chairman and retired GP had, but he looked away sideways and down and ?dismissive/embarrassed as he nodded. By the end of our 20 Minutes, all those other delegates knew EXACTLY the horror of what it meant and had www.MISSD.co in our document to refer to for training to take away with them when they left. Ok, that’s just Worcestershire, but it’s something.
We HAVE TO DO SOMETHING David. We can’t just sit on our hands. What you are saying is all correct, I know, but at the same time, we can’t sit and do nothing.
Being totally honest with you, and I hope this doesn’t upset you, sometimes I feel that whatever we suggest, try to do, is never worth doing in your eyes because the situation is so hopeless. One could see this post then, if you wanted to, between us as a frustrating batting back and forth of aspiration to make a difference, but us never getting it anywhere near right. Don’t take this as criticism, I know you’ve been embroiled in this for decades and from your deep research you know exactly, frustratingly, what should work and what won’t, and we blithely, good heartedly, desperately, keep running on irritatingly through our cloud cuckoo land.
I’m trying to say, we are with you all the way and although WE may feel we are winning small battles, yes, we know that from your vantage point, the war is pretty well lost. But we have to keep fighting, to be true to our principles and above all, to Olly, who had so much sheer guts but was just as pessimistic as you!