New Initiative: The Withdrawal and Recovery Meeting (WARM) Network of Groups
By Jennifer Bryant and Laurie Oakley
This is a new initiative to give anyone who would like to start an in-person withdrawal group in their community a way to get started. We have created a free “toolkit” that contains a Guide for Facilitators, Suggested Group Format, Suggested Readings, List of Topics, and Sample Flyer. There are no hard and fast rules, just suggestions that we are confident people will find useful.
From the WARM Website:
“The WARM Network of groups exists through the volunteer efforts of a growing number of laypeople within the withdrawal community who recognize that change is up to us. We seek the healing power that only connections can provide, knowing that face-to-face meetings promote wellness in ways that surpass our valuable, yet limited, internet connections. As we exit the dark corners of the web and venture into our local communities, we find strength in solidarity, with the presence of our groups conveying an undeniable message: Withdrawal syndromes are real and must be addressed. We are confident that this positive action benefits us as much as it benefits others. It allows our vulnerability and invisibility to disappear as our strength in unity grows, because in unity, there is strength.”
Founding members of the WARM Network are Jennifer Bryant and Laurie Oakley. Both are survivors who have had withdrawal experience.
Jennifer:
“There are multiple online taper support groups for people worldwide, yet I believe in the value of having a face-to-face support group with those in the same situation. So, in 2013, I created a group in Durango, Colorado that I chaired for a year, until I relocated to a smaller town. There were several members in the group, however, no one was able to sustain it. A few years later, Laurie Oakley, of Cincinnati, Ohio, who had started her own support group, contacted me with the same vision. We combined our group literature and painstakingly edited over the next several months into what is now the ‘WARM Network’ website, which includes a ‘toolkit’ that can be printed out for use in a group with a guide for facilitators and a list of possible meeting topics.
We understand that not everyone is able to leave home to attend meetings, but for those who can, it is a marvelous way to overcome isolation. Countless survivors in our communities are undergoing the same experience in a world where they are not heard by loved ones nor by the medical community. Meetings are also a place to share withdrawal resources that other survivors might be interested in and benefit from. For those in withdrawal who are not well enough to attend meetings, we hope that a group member or two might be willing to visit the home to break the isolation there.
Nothing is more satisfying than to use one’s own experience to benefit others. We hope those on the road to recovery from medication withdrawal find the WARM Network a valuable way to share experiences, resources, and hope within their communities who might not otherwise discover this kind of help.”
Laurie:
“The WARM initiative is meant to be a grassroots effort to bring face-to-face support to all who need it. We want to provide a solution to the lack of support we find with prescribers and doctors, a way to take positive action, and something that will bring unity to the various aspects of our movement. We hope that through the creation of support groups, we will fill the enormous void in withdrawal services within the medical and mental health systems, as well as address our powerlessness, while reducing our isolation.
While searching online for others who were doing this, I discovered a heartening meeting format on the blog of Chaya Grossberg, a survivor who coaches others on creative alternatives to psych meds. I immediately contacted her about who had written it, and she put me in touch with the author, Jennifer Bryant. Jennifer brought great energy and a similar passion to this project, and together, we were able to bring it to completion.
Another friend, Valentine Bickett, and I started a group last year after receiving a handful of requests by attendees of Cincinnati’s Holistic Mental Health Network, a monthly meeting, which focuses on alternatives to the current mental health system. In fact, a few people had asked specifically for support with medication and withdrawal issues. Currently, we have a Psychiatric Medication Withdrawal and Recovery group in Cincinnati, and a Prescribed Medication Withdrawal group in Wales in the UK led by Shane Cooke and Mary Hennessey. Both groups offer support to people withdrawing from any type of medication. This idea for support groups was tossed around in the comments sections of DavidHealy.org and RxISK, as we discussed the possibilities over the past year or so. David and the RxISK team have given our groups great encouragement from the start.”
Final thoughts:
Fred Rogers, host of the children’s program, Mr. Roger’s Neighborhood, advised parents who were concerned about the well-being of children after exposure to reports of a disaster, to “look for the helpers,” consisting of the response teams and others who unselfishly volunteer to aid in a time of crisis.
The crisis we are attempting to address is not yet visible, but through creating our own “disaster response teams,” we can educate others in becoming aware. When a meeting is advertised in a local community, people will want to know more and learn why it is necessary.
In an age of lashing out on twitter, quietly and skillfully organizing these groups will be our whisper. A whisper will most assuredly, without a doubt, be effective, because there is true power in loving and looking out for one’s neighbor.
If the idea of starting a withdrawal support group in your community interests you, please visit the website at warmnetwork.net. Here, you can learn more and request a toolkit for setting up a meeting in your local area. To follow us on twitter: @warm_network1, and facebook: @warmnetwork.
susanne says
In what is so often the harsh and lonely world of dealing with mental health issues this is a heart warming initiative with by the way a lovely name and logo. Congratulations to those who have got it going and expanding already and with all best wishes to Mary H and Shane who have flagged up the need for such groups on the blog and actually set one up in N Wales.
annie says
Many, many congratulations on a super new website WARM Network and not only has Laurie written the book, Crazy And It Was, sitting in my collection, she is doing such a fantastic job ..
In particular, I was interested in this list of Doctors, from Altostrata, Surviving Antidepressants. It seems a pretty poor show of numbers but a pretty good show, otherwise ..
From our point of view, as this was produced in 2011, how about we increase this list with more recommended doctors who are knowledgable, up to date, and willing to be named then all the hard work from Laurie and friends will have a bit more sure footedness with those to recommend … or to direct to their blogs for further information from reliable sources ..
IRELAND
Terry Lynch, MD, Limerick, Ireland
Ivor Browne, MD, Dublin, Ireland
Pat Bracken, MD, Bantry, Co. Cork, Ireland
UNITED KINGDOM
Robert Lefever, MA, MD, B Chir., South Kensington, London (addiction focus)
Bob Johnson, MD, London (not accepting patients)
Sami Timimi, MD, Lincolnshire
Peter Haddad, MD, Greater Manchester
Duncan Double, MD, Suffolk and Norwich
David Healy, MD, North Wales
AUSTRALIA
Rob Purssey, MD, Brisbane, Queensland, Australia (will Skype in Brisbane)
Yolande Lucire, MD, New South Wales, Australia
NEW ZEALAND
Tony Coates, MD, Auckland
FINLAND
Jeremy Wallace, MD, Vantaa, Finland
Hasse Karlsson, MD,Turku, Finland
DENMARK
Lisbeth Kortegaard, MD, Hoejbjerg, Denmark
NETHERLANDS
See the 22 psychiatrists listed at the end of http://survivingantidepressants.org/index.php?/topic/5195-tapering-strips-to-be-produced-for-paroxetine-and-venlafaxine/?p=66738
WARM header – Doctors
https://www.survivingantidepressants.org/topic/14971-recommended-doctors-therapists-and-clinics/
Alto has also compiled lists for those in the US
There is no one better to talk to than one who has been through it and how I wish these groups had been around when Seroxat entered my life, instead of spending years talking to a lot of ‘professionals’ who had not a clue and who steered in total the wrong directions making everything so so much much – worse ..
Laurie O. says
Thank you Annie. Having a list of knowledgeable doctors is really key when you consider how complicated withdrawal can get for some people. It’s usually one of the first questions asked by anyone attending a meeting: “Do you know of a doctor who can help me?” So yes, any help with expanding this list is more than welcome!
mary H. says
Well done Laurie – you’ve explained it as it truly is – i.e. that we are ‘at the ready’ whenever the general public wishes to wake up to the reality of the difficulties of withdrawal.
I would just like to add that we make a strong point of NOT being experts at anything medical – we are simply willing to share the things that have worked for us in the hope that they will spur others to continue on their withdrawal journey. We do also welcome anyone who may wish to share their thoughts before starting on troublesome medications. We also insist that everybody must seek medical support before changing anything at all to do with medication dosage.
We ( north wales group) will take a summer break from mid July (habit of a lifetime in education I guess!) and will restart in September.
Kim says
Hi all, does anyone know if there are any such withdrawal groups in Brighton england
Deirdre Doherty says
Great work Laurie and Jennifer, congratulations.
Rob Purssey says
Rob Purssey here – just FYI, “clinic/rooms” in Brisbane, but Skype patients throughout Australia (only, I’m afraid, medicolegal considerations mean not outside Australia). And the 2 other psychiatrists here at Brisbane ACT Centre also help folks wean / minimise adverse effects. Dr Nga Tran, adolescents and adults, and Dr David Ward, child, adolescent and adults. Thanks David H, the WARM network, Alto and all in this community for the hard work. Btw hope that The Inner Compass initiative gets a post soon, they’ve created a great resource IMHO. 🙂
Sandi Gundersen says
I’m not able to start a group I’m too sick but would love to attend one in my area any groups in Northern California near vallejo California??
Laurie O says
Hi Sandi, there is someone in the San Francisco Bay area who recently contacted WARM about starting a meeting there. If you would like, use the contact form at htpps://warmnetwork.net/contact/ and we can follow up with both of you.
Laurie O says
Link should be: https://warmnetwork.net/contact/
Laurie O says
In other news..
The runner-up for the Marsh Innovative Church Project Award is Olly’s Friendship Room, at St Michael and All Angels Church, Upper Sapey, Herefordshire. The creation of a warm, comfortable meeting room for the whole community to use provides space for groups including a film club, astronomy club, table tennis and a baby and toddler group, with an emphasis on caring for mental health in the community by helping those suffering from anxiety and depression. St Michael’s church was awarded a £500 prize.
The judges commented: “We were impressed by how the community has come together to save this small rural church. The church team is really serving their community and bringing people together, with an important message of inclusion and well-being.”
https://www.nationalchurchestrust.org/marsh-innovative-church-projects-award-2018-winners
http://whitbourne.org.uk/files/USRescue.shtml
Heather R says
Thanks Laurie for putting this link here. We, as Olly’s mum and dad, were amazed to win this prize for the renovation and innovative use of our tiny rural church, ( chosen out of 500 projects, and mainly because, like WARM, we are trying to help anyone struggling with the alone-ness that mental unwellness can inflict), but it afforded us the most fantastic opportunity to speak in front of a very receptive audience in St Paul’s Cathedral last Tuesday, who mostly had no idea about what some prescribed medications could do to those made ill by them, nor had they heard of RxISK and Dr David Healy, but by the end of the speech and networking throughout event afterwards, they were enthusiastically involved and very receptive. These were people involved with communities, albeit church-linked, but open minded, caring, and people with a different kind of power to that of Big Pharma. These were thinking, highly intelligent, moral people. We’ll put the speech I’d written on the Facebook page of Olly’s Friendship Foundation for anyone interested to know more.
I’d wanted to be wearing my AKATHISIA tee shirt for this event but I didn’t manage to make one in time. However, I had my cardboard signs and a special display of info and leaflets (which we carried across London from Paddington in a taxi that very hot morning!) and we set it all up in St Paul’s Cathedral for everyone to see. I’m still working on the tee shirt, ready for the next Press interviews….
Reading about WARM has given us so many wonderful ideas and pointers. We think what Laurie O and Jennifer B have done is simply brilliant! We were especially interested in the work too of Fred Rogers, which we knew nothing about in UK. As a children’s author and illustrator and having spent most of my life working with children, I can see ways we could emulate the work of Mr Rogers and his Neighbourhood, and make a positive difference in the area of spreading happiness for children and thus avoiding mental sadness where possible. Thank you SO much for this post Laurie and DH.
susanne says
Heard from Will Hall to say he has put up the Rxisk blog/prize up on his twitter and facebook accounts which together have approx 4000 followers. Thanks Will! He is a PhD student in Maastricht who is carrying out world wide study on- line ,on withdrawals from antipsychotics. If anybody could help with study it is on Maastricht Antipsychotic Withdrawal Study. (It was also flagged recently up on David Healy blog) He is getting a good response so far. the more data he can gather the better the evidence. If anybody wants to contact Will his e mail is willtonhall@gmail.com
annie says
Guess who has developed your Hangman idea, Laurie ..
http://www.auntiepsychiatry.com/Auntie%20Psychiatry.html#aka
Akathisia: Iatrogenic Hell
I’ve been wanting to do a cartoon about akathisia for a while, but was stuck for ideas of how to portray the concept in picture form. Then I read a conversation in the comments section of David Healy’s June 7th blog post discussing this very topic. One particular suggestion by Laurie O. stuck in my mind and wouldn’t leave me be: an illustration of the hangman game with the word AKATHISIA spelled out in the spaces underneath.
Why the image of a hanging figure? At its worst, akathisia can cause such intense torment that the sufferer’s only escape is suicide, often by violent means such as hanging. Loved ones are left with many painful questions as the death was usually unforeseen and completely out of character.
While researching the subject of akathisia, I sought out medical definitions of the word, and watched as much youtube footage of people suffering as I could bear. I was struck by the contrast in language. The main phrase I encountered on medical sites was “inner restlessness.” That nearly made its way into my wordsearch, but when I listened to the words of people in the throes of akathisia, I realised this was an insipid, appeasing kind of phrase. So I gritted my teeth and made a note of the recurring themes from the youtube footage. Torment. Torture. Terror. Living nightmare. Destroyed. Horror movie. Constant fear. Incessant movement. No relief. Bugs under the skin. Lonely. Isolating. Humiliating. Dismissed. Disbelieved.
And as I collected these words, I remembered my own brush with akathisia. It was many years ago, quarter of a century, in fact. On admission to a psych-ward, I was drugged up with enough haloperidol to floor an elephant. Despite being billed as a powerful “antipsychotic”, it made not a dint in my raging insanity. A few weeks later I crash landed, and found myself trapped in an unfamiliar body with a will of its own. By then I was compos mentis enough to recognise these weird, involuntary movements as the drug-induced extrapyramidal symptoms I had studied at University. My main fear was Tardive Dyskinesia, and I voiced my concern to the psychiatrist. He listened, then gestured to my jiggling, kicking right leg and said: “Well, tardive dyskinesia comes later. For now, you have akathisia.”
When I listen to the youtube accounts of akathisia, or hear of yet another youngster on psych-drugs found hanging, I feel that I escaped lightly.
To Laurie O: If you are reading this – thank you for the inspiration.
Laurie O says
Annie, that is brilliant! Who doesn’t like a good puzzle? Auntie’s explanation of Akathisia would make a nice pamphlet to go with the shirt.
Carla says
What a beautiful way of giving back to the community, Laurie, Jennifer, Mary, Heather and other special humans, who are passionate about educating and inspiring others about the difficulties of withdrawal.
It take a tremendous amount of dedication, commitment, understanding, patience, perseverance and a willingness to want to help others, without asking for anything in return.
I guess, anything is possible, when you have the community supporting your visions and goals.
Sincerest gratitude to all of you for all your invaluable input.
What can I say Heather?
You deserve the prize for renovating a rural church and setting it up to help anyone struggling with the alone-ness that mental unwellness can inflict.
Communities come together when there is a sense of cause and a willingness to achieve common goals, to benefit all.
Through your experiences, you are impacting and creating awareness throughout the wider community by sharing and caring ~ this is very powerful.
The knowledge that you are giving to the wider community is second to none.
Messages of hope or any important piece of information requires the dedication of humans to create an enriching community which leads to power and change.
When all members of the community pull together for a united cause, the power becomes unlimited.
A blessing, indeed!
Heather R says
Carla, thank you so much for putting our hopes into words as beautifully as you have. Coincidentally, we didn’t even know we were up for this Award, but it gave us such a fantastic opportunity to spread the information about RxISK and medication side effects and difficulties for so many about withdrawal. To hold up the word AKATHISIA on a piece of card before so many people in such an august setting as St Paul’s Cathedral, and explain what hell AKATHISIA pitches anyone into who is unlucky enough to experience it. The audience we were speaking to were, we assume, not driven by financial aims and political allegiances, but were members of many different organisations that care genuinely for the well-being of others without judging them. Everyone listened, took on board what we said, and many came to chat afterwards, expressing enormous interest. If just ONE of those folk can spread the knowledge we gave them in places of power where decisions are taken, then some good will have come from it.
Two years ago on November 2nd we all did the Candle Vigil here to spread the word and make a difference despite the odds we struggle against. Skeptics can scoff, but it does seem to me that some very strange coincidences and ‘out of the blue’ happenings keep appearing, to uplift us and aid us in our lonely battle – getting less lonely by the minute….
Heather R says
I have just read Laurie Oakley’s marvellously inspiring book ‘CRAZY AND IT WAS’ and I congratulate her most sincerely on an absolutely amazing piece of work, especially so as she has written it whilst battling prescribed medication side effects herself, with all the life stressing elements too that they can cause. She writes engagingly and exrtremely well. She may well have been a first time author when she wrote it, but I hope she’s gone on to write more, as her talent is obvious. My copy only arrived 2 days ago from USA but I have read it cover to cover, unable to put it down, for hours on end. It is well researched, insightful, and above all, hits hard at all the issues we grapple with, but keeps balance and brings hope. Very well done Laurie, and thank you!