The Angry Moms USA

I came across The Angry Moms group from the Team Daniel Running for Recovery from Mental Illness face book page and have been truly inspired by them.

The wonderful lady Sue Maida started The Angry Moms group in the USA to advocate for the safe use of clozapine and I strongly believe this is something we also need to do in the UK. Further info will follow on this. Please send me a message with ideas on how we can improve the use of clozapine in the UK.

Sue kindly agreed for me to share her post regarding why she is an angry mom, so much of which I could relate to:

Hi,

I've been asked quite a few times over the last few months, "Why are the Angry Moms angry?" I even heard this question while protesting in DC on May 24th. Of course, I can't answer for all of you Angry Moms. However, I thought it might be helpful to some to know what I'm angry about.

I'm angry that (this is a "short" list off of the top of my head this morning):

1. My son was stolen away from our family in a stealth-like manner.

2. We had no idea of what was going on.

3. When things started to get really bad, and I called multiple "help lines", I was told that he would have to call himself.

4. When I tried to explain that he didn't believe that he was ill, and that he said that he didn't need help, I was told that there wasn't anything that they could do unless he was in immediate danger of hurting himself or others.

5. When I tried to search the internet to find explanations of what was happening, I found nothing that I could recognize as help for him or us.

6. When I attended multiple conferences, seminars, trainings, classes, Zoom meetings, I couldn't find any real answers for what was happening, or what to do.

7. When I attended multiple LEAP trainings, the wonderful suggestions made for me to try didn't seem to help with my son. (However, learning to listen differently, and empathize has been very helpful. I'm still working on the agreeing and partnering parts.)

8. When I joined many Facebook "support groups", I found so much despair. The horror stories that I heard only terrified me more.

9. When I finally found Rachel, and Team Daniel, I began to feel hope. However, my son and doctor were not willing to listen to the advice that I was getting.

10. My husband and I were forced to petition the courts ourselves for an involuntary Mental Health Evaluation. (The agencies that I had been talking to kept saying that they needed more evidence/time.) The police came and picked him up. Later WE had to petition the courts for an AOT too. He'll probably never forgive us for this betrayal.

11. While hospitalized he was titrated up way too quickly on medications. He developed a bad rash to lamictal/lamotrigine, a medication preferred by Team Daniel.

12. It was nearly impossible to get any information on his condition or treatments even though we have a Durable Power of Attorney which includes Mental Health & HIPAA.

13. I had to fight for over a year to get his doctor to try Clozapine. The doctor had scared my son to death with talk about how dangerous it is and how bad the side effects are.

14. After sharing Dr. Laitman's book, the Clozapine Handbook, multiple Team Daniel handouts, and recorded presentations by Dr. Laitman, on how to use Clozapine optimally, his doctor agreed to follow the protocol recommended by Dr. Laitman. However, he has not. Forcing us to find another provider for "things that he doesn't do" (like prescribing metformin for weight gain, seizure protection medication, propranolol for heart concerns....).

15. Our general practitioner will not follow Dr. Laitman's recommendations either. She says that our son has no history of diabetes and other diseases. However, she admittedly has nearly no experience with psychosis and anti-psychotics, much less Clozapine. After giving her all of the books and information, she still refuses to budge.

16. Do to the damage caused by REMS over the decades, it's nearly impossible to find a prescriber that is willing to register with REMS and prescribe Clozapine. Much less one that is optimistic about using Clozapine. Much, much less one that knows how to optimally use it while safe-guarding against predictable side effects. So, I can't just "get another doctor" when I'm very unsatisfied with the one that we have.

17. Every week for six months, than every other week for six months, then for the rest of his life, my son has to have required blood tests and hope that everything goes ok with the chain of reporting his results so that he won't suffer an interruption of Clozapine.

18. Due to his doctors' unwillingness to follow Laitman protocol, even after being on Clozapine for over a year, he still has notable symptoms and is suffering so much.

19. My son has no optimism about every feeling good. He feels "wonky", and still doesn't believe that he was ever sick, or that Clozapine is helping at all.

20. My WONDERFUL and loving son has done nothing to deserve this! He feels so alone and hopeless.

21. Others, including some family, insist that we need to use Tough Love. We need to take care of ourselves and move on with our lives. Really? Going out for lunch, getting my hair or nails done, traveling internationally, vacations, parties....? How can I do these things when I know how much my son is suffering? It's so hard to enjoy anything (except my amazing 3 month old grand-daughter......but my new fear is, what if "it" "gets her"?).

22. Some say that he deserves it for poor decisions that he's made in his past.

23. Some suggest that it may be due to poor parenting, upbringing, and education.

24. Some say that people "like him" should be locked-up for good because they are a burden to society.

25. Professionals sometimes say that we have to wait until they hurt themselves or someone else before they can do anything.

26. Laws, professionals, many groups, believe that he has the right to choose for himself if he wants help.

27. Even professionals don't seem to "get it" regarding anosognosia.

28. Doing constant research, finding doctors, fighting for proper care, organizing volumes of notes, scheduling appointments, picking up and dosing medication, maintaining all records for everything while financially supporting all required for care........falls on the parents.....who often have no say, and are rarely included in discussions about treatment.

29. The life that my son was headed toward has been snatched away. Now he barely "makes it through the day". Before he used to seize the day. He had such plans of a rewarding career, travel, and his own family. He looked forward to being very supportive in the care of his aging grandparents.....and someday us (his parents). He constantly monitored that his sister, and extended family, were doing well. Now he doesn't feel confident in even taking care of himself.

30 IFFFFFFFFFFFFFF we're able to get him to a stable MEANINGFUL RECOVERY, it could easily be snatched away due to things like the REMS that could interrupt Clozapine.

If that were not enough, what about the poor souls that seem to be forgotten? They are sleeping in the streets, while we drive or walk right past. Some comment on how disgusting "they" are, or how "this shouldn't be allowed". Why do "we" have to see this ugly reality? However, many of "them" look just like my son did before we got him into forced treatment. Additionally, many of "them" that now are on the streets might have been very successful young people that were hit by this terrible disease. Others are locked up, or dead, out-of-sight-out-of-mind. A relief to "society". How can this be possible in today's world, in the richest country in the world? How can "professionals" and agencies boast about all that they are doing for "mental health"? How can the HUGE amounts of money spent yearly on this "problem" seem to be leaving the most vulnerable behind? How can any mother be glad that "it didn't hit their kid" when it could at any time? Why can't we do something? Why aren't we able to work together to really make things better? Don't every one of us, including "them", deserve human dignity?

So, REALLY???????????? Yes, you could say that I'm angry.

Not only has my son suffered tremendously, our entire family has been devastated. Everyone has been impacted on so many levels. However, it is so obvious that he is suffering the most. It's heart breaking to hear him say, again just last night, "I'm sorry that I'm such a pain." He's not a pain. He's amazing! The pain is the fault of the "professionals" that don't help families identify what is happening, and where they should go to get REAL help. To me it's any easy answer: Team Daniel.

Once again I'd like to thank my "Fab 4": Dr. Rob Laitman, Dr. Ann Mandel, Rachel Streiff, and Angela Brisbin. I wouldn't have made it this far without you. You are so amazing and help so many of us and our loved ones. Thank you just doesn't "cut it", but it's all that I've got right now. So. THANK YOU!!!!

Please find their website here and sign up to The Angry Moms army.