Monday, 30 January 2012

Recognition from Nick Panay and NAPS

I recieved an email  today from Jackie Howe, the CEO of NAPS (The National Association of Pre-menstrual Syndrome) who has passed on the details of the 'Write to your MP' blog in a bulletin to all it's members.

To my surprise and delight, I have even been given personal recognition from Nick Panay... He wrote..

"Our thanks to Cat for her excellent initiative. It’s now up to all of us individually to ensure that we make a difference and ensure proper recognition of PMDD."

Nick Panay, NAPS Chairman and member of the ISPMD Panel (International Society for Premenstrual Disorders) working on the consensus, commented, “The work pioneered by Cat Stone is excellent as it will increase the head of pressure for the change we are hoping to implement through the ISPMD group.”

I am SO chuffed I feel like crying!! Wow... Just wow....

To read the full bulletin, please go here http://www.pms.org.uk/About+PMS/Bulletins/2012+Bulletins/January+2012/item1242/



So please.. if you were doubting or trying to decide if it's worth writing to your MP then don't!
It REALLY will make a difference, and the more ladies who write, the more pressure will be put on the WHO to listen to our needs.  To have such an expert backing the cause is so reassuring.  There is weight here, there are people in power and The Chairman of NAPS, Nick Panay, is supporting us all the way!

BE THE CHANGE!

To find out how to get involved, please read my previous blog  http://meetmypmdd.blogspot.com/2012/01/be-change-get-involved-write-letter.html

Tuesday, 3 January 2012

BE THE CHANGE! GET INVOLVED! WRITE A LETTER!

How could YOU make a difference to PMDD sufferers all around the globe?

Do you suffer anywhere on the spectrum from PMS to PMDD?
Do you have a friend or family member who suffers from PMS or PMDD?
Do you feel hopeless, like there is no way you can help or change things?

There IS a way you can help make life better for women who have PMDD, and all it takes is a letter.  

Whether you are a sufferer of PMDD or a concerned friend or family member, you CAN help to make a difference.

During my recent research, I have realised that everyone in the medical profession, ultimately refers back to what I see in my mind as a big HUGE book called The International Classification of Diseases, or the ICD. It is published by the World Health Organisation (WHO). This started in the 1850's as classifications of death and has been altered and revised over the years to become what it is now...

From the WHO website
WHO is the directing and coordinating authority for health within the United Nations system. It is responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends.”
This 'book' is revised roughly every 15-20 years, and as new research is discovered, the book is constantly updated and is available in it most current 'draft' edition. The next publication date is 2015 for ICD 11. (The current edition, ICD 10, was published in 1990... just think about what has changed since then.)  PMDD is not classified in the ICD 10. 
PMS is listed as a physical disorder – N94–3, ‘premenstrual tension syndrome’, under ‘Pain and other conditions associated with female genital organs and the menstrual cycle’ and there is no requirement for a minimum number of symptoms or for functional impairment to make the ICD–10 diagnosis of PMS.

PMDD is currently in the draft edition of ICD 11, and is described as follows within the section 'Diseases of the Genitourinary System > Non-Inflammatory diseases of the female genital tract > Female pelvic pain associated with genital organs and menstrual cycle' :
"Severe form of premenstrual syndrome considered as a distinct clinical entity, characterized by prominent symptoms of irritability, anger, internal tension, dysphoria and mood lability. Diagnosis requires a prospective symptom diary documenting specific cyclic symptoms associated with the luteal and menstrual phases of the cycle, and evidence of socioeconomic dysfunction. "
Just because it has reached draft stage, it STILL doesn't mean it will make it into the next edition of the ICD. The ICD is mainly used in Europe as the standard text for physicians, specialists, researchers, drug trials and more.

In America, illnesses are classified by the DSM - Diagnostic and Statistical Manual of Mental Disorders, currently in it's 4th text revision. DSM 4 was published in 1994 by the APA – American Psychiatric Association. This revision lists PMDD as ‘premenstrual dysphoric disorder’ in the section ‘Mood disorders not otherwise specified’, with its clinical criteria laid out in Appendix B – ‘For further study’. This is still not specific enough, and there are currently proposals to give PMDD it's own classification in DSM 5. The 5th revision of the manual is due out in 2013. The APA have a section on their website about the new proposals which you can find HERE. This proposes that PMDD has it's own placement within depressive disorders rather than be hidden in the appendix as it was in DSM4.

What will it mean if it goes into the ICD 11 and DSM 5?

It will mean that doctors can't say “it doesn't exist”, it means that it will be recognised in the medical profession as a very REAL and debilitating condition. It would mean that more research could be done, more guidelines set out for doctors to diagnose the disorder, better treatments and drug trials.

I can't resist sharing this, written by a member of one of my support groups, it sums most of our experiences up brilliantly!
Me: I have a problem with my hormones being out of balance.
Doctor: Really? Well take this pill and it will switch your hormones off altogether so you won’t have to worry your pretty head about it. Shut the door on the way out will you?
Me: I have a problem with my hormones being out of balance.
Doctor: Really? Well, take these anti-depressants and you won’t have to worry your pretty head about it. Shut the door on the way out will you?
Me: I have a problem with my hormones being out of balance.
Doctor: Really, well CBT works for that. Try that and you won’t have to worry your pretty head about it. Shut the door on the way out will you? Etc etc”
If PMDD was recognised in the same way Bi-polar is, for instance, it would change many women's lives. To be believed, to be understood, to be given real help and good sound advice.
This in turn could lead to financial help for women who are so severely affected that they can't work. If it became recognised as a REAL disorder, it could possibly (in severe cases) qualify as a disability, and then sufferers that can't work would no longer face financial hardship as they could claim benefits. I know many sufferers who cannot make ends meet, who are trying to hold down two jobs while coping with PMDD, or who are on the breadline with their children because they can't get disability help.

How do we ensure PMDD gets included in these publications?

I wrote to my local MP, Steve Brine (Conservative for Winchester UK) to find out just that. Back in August, I went for a meeting with him to discuss the best way to raise awareness within the government about this issue. He suggested that the BEST way to get this recognised is by writing to your MP (Member of Parliament), MEP (Member of European Parliament) or Congressman. One letter from one person wont get much attention, but if lots of women write to their MP's and Congressmen about how important it is that this makes it into the next publications we have more chance of being listened to. 

This may sound like a scary thing to do, but it really isn't. Below, you will find links to 2 websites. One for the UK and one for the USA. Just type in your post or zip code, and up will pop the name of the person you can write to. These elected officials are working FOR YOU. These people have access to information and people that we can't get access to. They can raise this issue, they can get information, to the health ministers and ultimately the organisations that compile and print these guides and manuals. It's like sending a message up the chain of command. If you really want to help make a difference, then please, write a letter and email it to your MP, MEP and Congressmen.

WRITETOTHEM.COM (UK)
FIND YOUR MP (SCOTLAND)
WRITEYOURREPRESENTATIVE (USA)

If your MP or Congressman is female, then there is even more reason to write. Women need to be heard, and we may find even more understanding and willingness to help if our point of contacts are female politicians.

If you are in a different country i.e. not in the UK or USA, then please find out who your local government official is and write to them. I would love to be able to provide the same quick links to find out email addresses etc for every country, but that would be impossible for me... so have a little web search and see if you can find a 'write to your MP' style website for your country.

Your letter has to be unique... If you wish to print out this blog and INCLUDE it with your letter, please do, but it will mean nothing unless you write your own story or opinion, in your own words. Maybe you'd just like to use this blog as a jumping off point, using the facts I've laid out here, but whatever you do, write from your experience and your own viewpoint, and give your address... this needs to be from a REAL person, and REAL constituent. One letter printed out a thousand times is still only one letter. If we all write based on our own personal needs and situation, we will all be counted . Anonymous letters or letters without addresses may not be taken seriously.

If you aren't good at writing letters, ask someone to help you. It could take an hour, or maybe it's a process over a week, but a little bit of time an effort could go a LONG way. Then, when PMDD gets recognised in the ICD and DSM and women all over the world start getting the diagnosis and treatment they need, you can say... “I helped to do that!”

To help you get an idea of what to write, I will share with you the letter I sent....  Please click here to see my letter.

(Remember, if you are in the USA, you can bring up the revision to the DSM 5 that's due out in 2013 too.)

Obviously, my letter is quite long... That's because I enjoy writing, and will always try and include lots of facts etc along with my own personal accounts. Your letters don't have to be that long, or, they may be longer! Do whatever is right and comfortable for you.

Use this list to remind yourself what sort of details to include:

Your name and address
  • Why you are writing – are you a sufferer? Or a loved one of a sufferer?
  • Explain a little about the need for this disorder to go into the ICD and/or DSM – use facts from this email or print off this blog and refer to it in your letter.
  • What has your experience been with regard to getting diagnosed and treated?
  • How would it help you if PMDD became recognised and more widely known about?
  • How has the current 'non-recognition' of PMDD affected you?
  • How are you affected financially? Are you struggling to work and live with PMDD?
  • Are you a parent with PMDD who needs help and support but can't get any?

You may think your letter will be like a needle in a haystack, that it wont change anything so what's the point? But I suspect, if you are still reading this, then you are at the very least, considering getting involved! One letter and a little bit of your time is all it could take to help push PMDD from just being in the draft phase into the actual new editions of the ICD an DSM.

If PMDD doesn't make it into the 2015 edition of the International Classification of Diseases (11th edition) or the 2013 edition of the Diagnostic and Statistical Manual of Mental Disorders (5th revision) then it could be up to another 15 YEARS before we get it added and officially recognised.

Do you want to take that chance?

Please leave a comment below if you plan on writing a letter to your MP, MEP or Congressman, and as always feel free to let me know what you think of this post or blog... It is always lovely to hear from my readers.

HAPPY WRITING!!

Cat x

Links of interest:
http://www.who.int/classifications/icd/en/ - The ICD and WHO

***** UPDATE 30 January 2012 *****

I have heard back from a few women who have contacted their MP's and have had an excellent response.  It is really worthwhile letting them know your views.  Please let me know about your experiences.


Cat x

My letter to my MP

Emailed August 2011

To Steve Brine,

I live in *********** in Winchester (****** **** ******). I'm a Mum of two and suffer from a chronic, disabling mood disorder called Premenstrual Dysphoric Disorder. I run two facebook support groups for women all over the world who suffer from this condition. I also write a blog about my disorder, which won an award last year for being in the top ten PMS blogs. www.meetmypmdd.blogspot.com

From all my research and reading, what comes to light is the complete nightmare any woman, where ever she lives in the world, to get diagnosed. It can take years for the penny to drop that the mood swings and depression are cyclical with the menstrual cycle. When that realisation is made, the woman has often already been living with the diagnosis of depression or Bi-polar, and been receiving the wrong treatment.

I can speak from experience that when you find out there is a name for what you go through every day, it is a huge relief, which is then followed by endless trips to different health professionals who quite literally don't know what to do with you. The GP referred me to mental health as my symptoms brings on a dysphoric mood, depression, suicidal ideation. The mental health team say as it's hormonal you should see a Gynaecologist, they try to help where they can, but essentially, you then end up with a trip to the Gynaecologist with mental health symptoms and no one knows what they are doing! I could go on, but I don't want to bore you with all the details.. not unless it was over a cup of tea!

What I have realised is that PMDD is not recognised in the World Health Organization's - International Classification of Diseases. I have heard many stories of doctors who tell their patients that PMDD doesn't exist, and this is just devastating to a woman who has finally found (through sometimes months or years of research) a name for their illness. I did a story last November in the Daily Echo about my condition, to try and help raise awareness. So many women are out there suffering in silence, misunderstood, and so are their husbands, boyfriends, children and parents. That is if you are lucky enough to be able to keep hold of your relationships. One common theme is that many women find themselves single their whole lives, too afraid to get into relationships. Family relations can be equally difficult.

I have many things I want to do with my life, but my focus is often pulled back to my disorder and therefore, writing about it and raising awareness becomes something I can do, to hopefully help other women. I would feel like my life wasn't wasted to this disorder, and that I had managed to achieve something despite the PMDD.

We need this disorder to be recognised in the ICD. On the WHO website, it says an 11th revision is due out in 2015. If Premenstrual Dysphoric Disorder were to be included in that book it would change the life of many many women. If it was finally recognised as a chronic mood disorder, women would be able to get help quicker and GP's would know what treatment guidelines to follow. To suffer with an illness that literally makes you feel like you are completely insane on a monthly basis, and then find out that the name you have found for it isnt actually recognised by anyone is truly devastating. It makes the long struggle to find treatment that works for you, an extremely stressful, lonely and soul destroying journey.

PMDD often stops women from being able to hold down employment, yet it is not recognised as a disabling condition. Stress is a major factor in PMDD, and most suffers try to avoid any type of stress. Being a mother with PMDD is very hard, let alone trying to hold down a job as well. PMDD needs to be recognised as a disabling condition.

If I had Bi-polar, people would be more understanding, because they have heard of that, it exists, it is listed in the ICD. Premenstrual Dysphoric Disorder is often mis-diagnosed as Bi-polar as the two conditions are similar. The main difference is, a person suffering with Bi-polar, will have relatively 'normal' periods of life between episodes of highs and lows. A woman with PMDD suffers on a monthly basis, often at ovulation as well as menstruation. I was taken to hospital (for the second time) in an ambulance only 2 weeks ago with Mittelschmurz, agonising ovulation cramps. This means that when you have PMDD, you are plagued by symptoms all month long... if you are lucky, you get 10 days when you feel normal. By normal I mean, you feel like the person you are, you feel together and able to cope with life, smile and laugh even. The other 20 days are phases of mental and physical symptoms, and the constant management of these. Women with PMDD go through this nightmare 12 times a year, every year. I have had this condition since I was 13. I am now 34.

I hope, that you will be able to help raise this issue with the right people. This is a global issue, as well as a local one. Women are in desperate need of recognition and help ALL over the world...

Thank you for your time, I hope to hear from you soon.

Many Regards
Cat Stone

I met Steve Brine in August 2011.  He has since raised this issue with Anne Milton MP Parliamentary under Secretary for the Department of Health.  Today I wrote to the WHO and my MEP's (Member of European Parliament).  Look out for my next blog on how you can help get PMDD into the ICD and change the lives of sufferers world wide.

All it takes is a letter.



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