Welcome to my PGP/SPD blog: Links and Info:



SPD is Symphysis Pubis Dysfunction.


PGP is it's appropriate name: Pelvic Girdle Pain. (although I disagree as many do and feel this name is too general.)


I have created this blog about my story to raise more awareness in regards to PGP and SPD with links to the appropriate support sites to make your recovery as easy as possible.


The main websites I have found for you to look at now are:


The ACPWH have changed their website and here are the new links to access the 2 SPD documents you need to read which will offer you help when you have been diagnosed with SPD:

http://acpwh.csp.org.uk/publications

http://acpwh.csp.org.uk/publications/pregnancy-related-pelvic-girdle-pain


http://www.pelvicpartnership.org.uk/

(This is a charity support group here to help you as a sufferer.)


http://www.facebook.com/group.php?gid=137142035812&ref=mf

(Our own official support Group on Facebook JOIN US, RECEIVE HELP, INSPIRE OTHERS)



More websites you may find helpful:


NEW CHARITY: SUPPORT PELVIC DYSFUNCTION: http://www.supportpelvicdysfunction.co.uk Donate online, receive help and support one on one and read helpful the helpful guides provided to help you cope with SPD and other pregnancy related complications.


Study by Royal College of Midwives-Evidence-Based Midwifery, Sept, 2007 by Vanda K. Wellock, Margaret A. Crichton


http://findarticles.com/p/articles/mi_6862/is_2_5/ai_n28445225/


Link about DSP and SPD/breastfeeding.


http://www.plus-size-pregnancy.org/pubicpain.htm#Should%20I%20stop%20breastfeeding%20if%20I%20am%20still%20experiencing%20pubic%20pain%20postpartum


More info on SPD and a link to a support forum to talk to others about SPD.


http://www.madmums.com/GH_ShowArticle~HID~147.htm


Community Legal Aid: (If you need legal advice in any situation)

0845 345 4 345.



Another suggested link that my be helpful: (Scotland)

http://www.pelvicinstability.org.uk/index.asp


Additional links which are useful (Thanks to a lady from babycentre and all the other contributors! You know who you are and you have been fantastic!)


http://www.nice.org.uk/nicemedia/pdf/CG62FullGuidelineCorrectedJune2008.pdf and http://onlinetog.org/cgi/reprint/8/3/153.pdf


SPOON THEORY:


But You don't look sick?

Copyright: 2003 by Christine Miserandino butyoudontlooksick.com

A story that helps the disabled not just SPD sufferers:

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf



It is important to NOTE that PGP formerly SPD is not just caused during pregnancy (1 in 4 women) and that many sportsmen and women also suffer from PGP / SPD.


Hope you find this information helpful and pass it on and invite others, as severe cases are defined as a disability and can be made permanent condition(s) if not treated correctly.


Awareness:


Due to lack of awareness that this site exists, MANY women are sat at home now, MANY pregnant and suffering unknowingly with SPD and/or joint conditions. As a founder of a start up charity I cannot advertise. I am merely asking you as a reader of this blog and supporter of the new SPD charity, Support Pelvic Dysfunction, to share this site with others, maybe friends on your facebook? twitter? Anywhere, by doing so YOU WILL be HELPING many more SPD sufferers like YOU and those that are suffering in silence right now not knowing we are here to help. We need YOU to help us, to help them. :)


We would like to put out a huge THANK YOU to all those women on our support groups and pages, on facebook, who are all discussing SPD and helping one another, and to thank ALL those who are sharing this blog and the charity website Support Pelvic Dysfunction.


Because of you, Support Pelvic Dysfunction receives many emails from helpless women desperate to know if they will re-cover and emails from those that have unknown underlying joint conditions, to which we can assist to get them a REAL diagnosis and help!


Dont suffer in silence!

Email: help@supportpelvicdysfunction.co.uk


(This blog is not affiliated with the charity, however as the founder of the charity, this is my personal REAL, TRUE TO LIFE story, that i have put in place to help others!)



Please enjoy my personal story in the form of a blog below.

Saturday, 19 December 2009

One step forward, then pulled back by a noose around my neck...

..A noose that is unwanted and put there by so called professionals trying to help, who are just making things more complicated and causing more suffering if you ask me. (Don't worry was merely a metaphor.)


I finally gained access to much needed services, i.e. Pain Management Clinic and Physio experienced in Manual Therapy, when we receive the initial assessment from Social Services, which *surprise, surprise* was based on some false information too!

The ex consultant of mine and ex midwife accused me of 'exaggerating' my condition and stated that I sought access to Adult Services and additional help RE: my condition, without consulting them.

Do these people NEVER write anything down? I asked, I begged, I screamed, I cried, I gave up and tried to help myself, as they refused me the help I need.

So now I hope they are happy as Welfare have defined our young son as "a child whose vulnerability is such they are unlikely to reach or maintain a satisfactory level of health or development without the provision of services" when they have stated we have not failed to provide appropriate care at any time for our son!

They have based the above on the fact that I cannot walk and I am requesting a stairlift (well wouldn't anyone when they have no access to upstairs, at all? What good am I to my son stuck upstairs and cannot get down? I have been there before!) and on the fact that I am accused of 'exaggerating' and making up that the condition is this bad, therefore it is psychosomatic...

What world are we living in today?

People capable of looking after children, people with the most experience in childcare possible, being treat like this and judged falsly like this and now have to have 'visits' to make sure we are looking after our son 'appropriately' when there are people out there who need these visits and cannot look after children ( not always due to their fault either ) and they are not getting the help they need. Why? because some professionals make false accusations based on no evidence and therefore time is wasted on people who can look after their children etc...

I am so frustrated at all of this. It is ridiculous, I really hope my ex consultant is pleased with himself, I really do, and I hope my ex midwife is pleased! There are some cruel people in the world and they need to look at their actions not bully and accuse others!

I just don't know how it got to this point, as I discussed everything with the professionals and they blatantly refused me the help I deserved when pregnant, as stated in BLACK AND WHITE by the NHS THEMSELVES in many documents etc, therefore they have made my condition worse, and then to accuse me of 'exaggerating' well I guess I enjoyed losing our home, our jobs, not having access to food, struggling, no cooker, no fridge/freezer, having to move when heavily pregnant and pay for lots of things including a phone line due to the move etc, did I?

Are these people for real?

Why don't they start helping me and stop accusing me! That would help.


They accused me of accessing services without consulting them, I begged them, many times, they refused referral to pain clinic and manual therapy physio, so what was i suppose to do sit back and rot? I needed help, disability aids, to help me get about the house etc, I couldn't sit back, but oh yeah, they think i made it all up....


Well I am going to see the Psychiatrist and I hope to God I really do that he/she can talk some sense into these so called 'professionals'.

And shelter line have sent me the paperwork for legal help, finally.

We are pleased to have, their much needed help.

I am also waiting for ICAS to contact me back so I can start this Formal Complaint finally about my ex consultant and midwife, everything is logged in this blog anyway, so there is no excuse for me to miss out any relevant information by accident now...

On a more positive note, social did say a positive thing about me:

"After speaking to (my name here) myself, she presents as being an intelligent and articulate woman. She does present as having a lot of pain, and in my opinion (my name here) perceives this pain as being very real and causing her a great deal of distress. I am unable to comment on whether her pain has a physical or psychological cause, however this does not appear to be having a significant impact on (my name here)'s care for (my sons name here). (My husbands name here) presents as being a good source of support to both (my name here) and (my sons's name here), however he would benefit from being subject to a Carer's Assessment in his own right."

We did request one, just never got one.

The assessment also states i need to be referred to adult services, i tried to refer myself and they told us where to go too!! SO now I need to be under Adult Services do I???


It really annoys me, it really does, and I am sick of crying because of them all!


They want us to go to surestart, we do too, but how can I when I cannot have access to a shower etc. and be presentable, would they go to surestart in my state? Doubt it!


I cannot wait to get a stairlift and get my life back on track so I can give our son a bedroom, like he has the right to have, we can have a bedroom, like we have the right to have and I can have much needed access to a toilet, bath/shower and have the ability to get downstairs in an emergency, well as well as the ability to get upstairs in the first place!


But... will this ever happen? And will it be able to happen sooner rather than later? Our son's growing, I am never going to be able to bath our newborn at this rate (in his baby bath as its easier to fill upstairs and makes things complicated when my husband tries to bring it down etc).


The lack of needed physical help is making enjoying and bonding times a chore!


Let's see where things go from here, I have no hope now that things will be resolved before Christmas...