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.

Monday, 28 November 2011

Still seeking 3rd Trustee! ITS NOT TOO LATE TO APPLY!:


Applicants for volunteer and trustee positions:

Please send the following questions filled out to:
help@supportpelvicdysfunction.co.uk

Please note: We have additional meetings with cavos but at this time they are not mandatory for trustees. (trustees may be welcome to come along to some of them, or all at a later date).

Required information via email or post.
POST: Please request corresponding postal address by calling 07721656764 on Mondays OR Fridays, 11am-4pm.
Suggestive advice line open from 10am-5pm on same days.

(The following information is mandatory whether the applicant is known by us or not.)



*If question is starred, it is mandatory.
(If you do not have a landline, please state in answer so question has been answered, however you must have atleast one mobile or telephone number you can put down so we can contact you.)



*Full name:

*Marital Status:

*Date of birth:

*Address and postcode incl town and county:

 Phone numbers:

*Landline:

 Mobile:

*Do you have SPD?

*(only if answered yes to previous question)
When did it occur, date occured mm/yy and if pregnant please state in weeks.

*Other conditions:

*All aids you use: e.g crutches...

*How many children do you have?

*Which child (if during pregnancy) did you develop SPD?

*What interest do you have in the charity your applying for?

*What, in your own words, does this charity do?

*Why do you want to be a volunteer or trustee for support pelvic dysfunction?

 Email address:

*Do you work?

*If you work how many hours a week?

*What qualifications do you have?

*What work experience do you have?

*Have you completed any 1st aid courses, if so when, where and what was issued?

*Have you completed the workbook for Vulnerable adults, if so when and where?

*(This question only for trustee applicants)
 Can you attend 3 mandatory meetings a year?

*What other time (excluding meetings) can you offer the charity?



Volunteers will be welcome to join in meetings if they wish at a later date.

3 meetings a year is mandatory for all trustees, however there may be additional meetings called to discuss important matters as they arise.

This is a start up charity, but will at all times be professionally run.



Thank you for your application and interest.


This is information needed from all people interested in volunteering or becoming a trustee.







Kind Regards,

(on behalf of)
Support Pelvic Dysfunction
help@supportpelvicdysfunction.co.uk

DISABLED ARE NOT EQUAL CITIZENS:

WE ARE NOT EQUAL TO ABLE BODIED PEOPLE, WE ARE NOT WORTH IT:




I AM MORE THAN UPSET.


How many more rights do we have to lose as disabled individuals?


COURSES AVAILABLE IN MY AREA: are FREE for people on JSA, and ESA (those worthy as they are capable to work) but NOT disabled individuals or disabled charity workers or volunteers.


WE DISABLED HAVE TO PAY, FOR A COURSE THATS JUST MIXED CRAFTS! £3/hr, but when we are not receiving much in the form of benefits and are not able to work, how do we cope? This seems a small fee but it shortly adds up for those who cannot work, cannot improve their lives or financially progress.


How do we meet other disabled people or MAKE NEW FRIENDS?


In our area there are no DISABLED coach trips or meeting groups! (And especially not wheelchair accessible for any of the groups that do exist)


I am working to set up the first SPD support group, if i ever get my own transport since there is no DISABLED TAXIS, and the only transport available is for the town only.


THE BUS COMPANIES: SAY THEY ARE AIMING TO BE DISABLED / WHEELCHAIR ACCESSIBLE BY 2013! *fingers crossed*


THE CINEMA nearest to us has 3D screens that i cannot access because they are not disabled accessible, no wheelchair ramps, stairlifts and no lifts as its a listed building. Why no ramps?


The 3rd small cinema room they state will be made 3D equivalent by 2012.


Will our whole lives be waiting for the world to catch up to the fact there are still a minority (becoming a majority especially with SPD and underlying conditions being diagnosed on a rapid basis), still a minority that cannot access their services!


Apparantly all i have been working towards, freedom, the freedom people take for granted every day, i am not allowed to have. I have been stripped of my rights as a human being completely now and they may aswell have put a plan in to shoot all disabled people in wheelchairs, coz theres nothing left for us to live for, other than our families, which we are housebound and not allowed to do anything we are capable of doing, so we have been stripped of our abilities because of disability and stripped of the rest because of NHS, COUNTY COUNCILS and now Disabled Car Depts!


I am more than gutted right now.     :(


Whats the point of DVLA deeming me SAFE TO DRIVE if Disabled Car Depts wont let me?  (previously told me otherwise!)


Disabled Car Depts told me before i am eligable for a grant for a WAV, 1)im disabled in wheelchair, 2)have 24/7 carer and a son. 3)On higher rates of both DLA (which i wouldn't be on if i could work or be sole parent to our son) 4)on benefits.
YET the gentleman i spoke to today says i HAVE TO BE ABLE TO WORK or BE SOLE PARENT to be able to get grant for Wheelchair Accessible Vehicle from Disabled Car Depts. So im not allowed to drive and get the free lessons i was promised (under 25yrs) because I AM DISABLED.


AS IF IT IS A CHOICE!


He says i am NOT ALLOWED THE RIGHT TO DRIVE, by saying i have to be passenger and my husband has to drive me, when they wont give him free lessons because ONLY THE RECIPIENT of DLA can get the free lessons. DESPITE DVLA DEEMING ME SAFE TO. (i have spent 6months following what they said already, not to apply until i have provisional etc etc.)


My husband does not drive because i was the one that did the lessons prior to SPD in 12weeks pregnancy! And because i cannot work due to disability and because husband is my 24/7 carer we have no money to afford lessons. It's true!


ITS A PARADOX NOW.


HE NEVER SAID CRITERIA HAS CHANGED BUT IT HAS BLOODY CHANGED IF THESE ARE THE RULES NOW!


Dr. and DLA made us homeless at 35wks pregnant, its no secret!


When were disabled people 5th class citizens or lower? Were they ever equal to 1st?


SO WE CANNOT GET A CAR THATS SUITABLE FOR ME, YET THEYLL LET ME GET A Disabled Car Depts CAR I CANNOT DRIVE AND WASTE MONEY?!?!


ITS NOT ME WHO PUTS THE PRICES UP FROM £600 TO £30,000 JUST BECAUSE ITS WHEELCHAIR ACCESSIBLE!!! THATS PENALISING US! WHY HASN'T ANYONE DONE A STORY ON THIS?


(SAME AS TAXI'S, ITS £3.20 FOR A ABLE BODIED PERSON, MAKE THAT £14 FOR DISABLED-IF YOU EVEN HAVE DISABLED TAXIS AVAILABLE IN THE AREA!)


OTHER LOSS OF RIGHTS:
What's the point of council giving us 1 fire exit instead of 2 (WE ARE NOT ALLOWED 2 RAMPS, ONLY 1 BECAUSE WE ARE NOT THE SAME AS ABLE BODIED PEOPLE AND WE WON'T BE MISSED IF WE CANNOT ESCAPE, IF THERE IS A FIRE AT OUR ONLY EXIT) and wait 12 months for adaptations. (SUFFER FOR 12MONTHS WITHOUT ACCESS IN OR OUT HOUSE, UPSTAIRS, NO ACCESS TO LOO OR BATHROOM)


THIS IS THE 2011 TRUTH FOR THE DISABLED behind the scenes, whilst THEY PRETEND publicly to be an investor in people and help people. REALLY THEY ARE stripping us of our rights and making us suffer for 12 months without access to basic human rights like toilet, bathroom, upstairs just because THEY DONT HAVE a suitable bungalow.


WHEN DID WE LET THEM TREAT US LIKE THIS?


When did we let them make us live like this? Who will stand up now and say the truth if no one else will? i will. I have lost everything else and its not just me that suffers, its my husband and son. Do they deserve this too?

NHS: Treat us like scum when we have not been diagnosed, treat us like psychiatric patients just because we have an invisible condition, that they choose NOT TO TEST FOR and INSTEAD treat us with abuse, malpractice and lies on our notes.

And who are WE to take on a council? The NHS? The Disabled Car Depts? The GOVT.?

HOW can we?

We have been left with nothing but a lot of traumatic stories, experiences people pretend they already know about because they don't want to think about them?!

That people don't want to know because as long as they do not go through it they are OK. And when they do go through it are HELPLESS to do anything, because the LAW doesn't protect disabled people over the age of 18years, there is no legislation in place to protect us. Just a workbook known as no secrets workbook.

ALL THESE LIES ABOUT DISABILITY DISCRIMINATARY ACT, WE CANNOT AFFORD TO TAKE ANY OF THEM TO COURT UNDER THAT ACT OR OTHERWISE!

3K MINIMUM! Did people even know that?

THEY HAVE LEFT US NOTHING TO LIVE FOR!

BECAUSE THEY ARE NOT GIVING US ANYTHING BECAUSE WE CANNOT WORK, BECAUSE ARE IN A WHEELCHAIR, DESPITE WORKING AND BEING IN FULL TIME EDUCATION FOR MOST OF MY LIFE!

ONLY THIS IS NOT JUST MY LIFE! ITS THE LIVES OF MANY!

WHEN WILL THIS STOP? WHEN WILL THIS CHANGE?

I can only see it getting worse from here.... slippery slope system to dispose of those who cannot contribute to society just like the nurses pushing women to KILL their babies if there is a risk of them being DISABLED!!!

WE ARE PEOPLE, NOT TERMITES!


Disabled Car Depts: Cannot give actual name due to being a respectable blogger. All names, places and identities are kept confidential.


PLEASE NOTE: Disabled Car Depts have decided i may still be eligable because i do the charity work that i do. So there may be hope for me still.


However it is still really sad that others are still suffering and there are SO MANY situations we are less than second best! Less than fifth best!


We should be able to get more help than this!

Saturday, 19 November 2011

Living with SPD and HMS. SURVIVING ABUSIVE DR'S!

I know that living with SPD is difficult enough, but mix that with a joint condition and it is a whole new ball game.


But, that does not mean that you cannot get the help you deserve. http://www.hypermobility.org/  are a HMS Charity that has guided me through some of the tough times with HMS.


If you become a member like i have, you receive lots of important and relevant information, and if your blessed to be in an area where they meet up, in which i am not, then you can discuss things with others who are in the same situation.


I cannot update anything else as the Health Psychologist Department have not been in touch despite the fact that i was informed ONLY the Pain Psychologist Dept, have dismissed me.


I am losing faith and losing patience and i am very grateful to be able to receive counselling yet again via my GP. But this counselling is not the psychology i need to be able to accept this disability to the full.


Many women struggle accepting SPD, HMS and even if for a short temporary period of time, women need to get over what they have experienced. As i am stuck with both conditions i have to try and help myself as no one else wants to help me or put me first, which is yet another reason why i started the SPD charity Support Pelvic Dysfunction.


Women like us, should not have to go through these experiences unsupported, especially when in many cases, and in mine, we have endured malpractice and abuse from Dr's and have been labelled wrongly in the notes. As abusive, as Deluded as my ex Gynae stated. Deluded. Is there really any need for that? Well he also said that i would never be diagnosed with HMS, and he was proven wrong, why? Because HE was the one that ignored my SPD diagnosis made on 16th July 2009. 


We remember this date clearly as transport took us to the wrong hospital and the lady there saw us and gave me crutches that i was not measured for. 


HE ignored that and made the most disgusting assumptions that i had self referred to Social Services, i had not. A local hospital Wheelchair Dept Referral was made by a different physio and it was all dealt with through Drs and professionals.


And with all the evidence in his notes, but too lazy i can only assume to read them, he went and lied to Social Services Safeguarding childrens department to tell them i was an unfit mother, that referred myself to social services and made up the SPD claim. (ALL medical notes prove otherwise - unless the NHS professionals failed to document appointments- which i doubt, as they have to, do they not?) Despite this fact, we still had to go through an ordeal of an investigation in the FIRST few days we should have been enjoying our son at home!


Not only did this man rob me of my pregnancy, he robbed me of my 1st few days at home too, and they did not deal with my complaint legally, appropriately or with respect. I was NOT allowed a meeting with them and PALS was told to no longer get involved after i had phoned them about the abusive investigation report in response to my SERIOUS complaint.


It was not just the first few days either, the investigation took time, precious time we should have had with our son, in our new home, with no access to bathroom and toilet and sleeping in the living room with a commode. (17 months we waited for adaptations). (This is the same Gynae Dr. that refused to write to DLA and confirm what my GP and Physio had already confirmed amongst others, which lead to a delay in financial benefits which made us homeless when i was 35 weeks pregnant, not only that either, lost my business i had set up from nothing, my job for a well known and reputable Dr and Inventor, and my husbands job as a Factory Operative (Nightshifts) as he had to become my full time carer.) All this from 12 weeks as thats when i woke up one morning and just like that, i couldn't turn in bed and then the pain was unbearable from that point on. (ALL documented as it happened in this blog). 


The report (reply to my complaint) stated that no nurses were present to confirm that this gynae had humiliated me by not allowing my husband to pull my underwear up from my ankles after an internal examination. This contradicts itself as nurses HAVE to be present during times as such, and there are many more flaws including the abusive language used against me.


WHY not take him to court if he was sooo bad?? 


Ill tell you. Because although i am trying to get over all of this ordeal, i do not wish to face this abusive man again because just seeing his face makes me feel sick, and i have verbal reports from over 50 women that claim he tells women that their baby could have died and that he saved them, which explains the only reason he could be receiving compliments and gets to stay and be an abusive Dr.


If authorities CANNOT protect you YOU MUST PROTECT YOURSELVES!


HERE IS A GUIDE I PUT TOGETHER TO PREVENT YOURSELF FROM BECOMING A VICTIM OF ABUSE FROM A MEDICAL PROFESSIONAL:


1) Always be adament that what they have to discuss about your case or you as a patient is always discussed infront of you. (my Dr mis informed staff on wards that i was able bodied and i was left falling constantly whilst heavily pregnant, left without food, with no commode facilities and left to struggle to get in and out of bed!)


2)If you feel uncomfortable about the way they are treating you or what they are saying to you, you have every right to change your Dr. Even if they protest this, you have to fight and stick to your guns!


3)I learned the hard way, SPD is AGONY during examinations, and my DR examined me EVERY TIME i saw him because it was vital for the baby to survive i was told by him. When he did so he would ask me does it hurt here, here? etc etc. And i would be honest and say yes! I was screaming in agony, no ones THAT good an actress! He would tut and say "thats not spd pain" no its coccyx pain i later found out, due to SPD.


So make sure you are NOT enduring examinations and PAIN just because your DR is skeptical!


4)Keep a log/blog or diary to make sure you have everything written in writing, although i am afraid to go to court due to their made up claims im abusive etc. and because i couldnt emotionally cope with his face, people have 3 years to take anyone to court and having things written down is VITAL, especially names and dates (if not a blog as i dont advise distributing areas or names in public blogs) Money is not important to me, my family and their health is, so i am trying to put it all behind me.


5) NEVER go alone! Take a friend, take your partner, take your mother, NEVER go alone, make sure you always have a witness! TO EVERY DR/gynae visit.


6)Make sure you are in a hospital that has an SPD policy in place, not every hospital at this time does, but you can ask at reception or Gynae reception, or ask a Midwife. You are also allowed to view this policy.


7)Ignore any DR who claims your FAT is causing problems, or that you are a hypochondriac, they are not willing to do their job and they won't make exceptions, so change them straight away!


8)If you need a wheelchair you are eligable for hospital transport, don't let any Dr have a go at you about this facility, it is there for wheelchair users (who can take their partners if they need a carer, and/or child ) if no other transports available. We have no car at this time, and although i am looking into motability car once i get my provisional, my EX Dr, Same one as mentioned in all of this, shouted at me and my husband on a busy ward, where everyone could hear, (no confidentiality at the best of times) and complained that i should not be in a wheelchair and that i should not be wasting NHS money by using transport, and instead i should pay £50 per taxi to get there. (DESPITE me not being able to get disabled accessible taxi's or afford them if they existed DUE TO (as mentioned perviously) this DR refusing to write to DLA and therefore causing us to become homeless at 35 weeks pregnant, i lost my business and my job, and my husband lost his job having to look after me)-If only he would have read the medical notes and written to DLA, and if only he had sent me to further SPD experts who would have confirmed SPD.




9)If a Physio is not prepared to help you because they believe ALL SPD goes away after birth, then you need to see a different Physio in womens health, Some do get better, but the ones who find themselves with severe pain and mobility problems may have underlying joint conditions or conditions causing SPD to stay, get the crutches and wheelchair if you need them! Ask to be referred to an OT and get your house adapted with movable and storable adaptations to get you through! Then if you do not recover you have them to continue to help you, and if you do, you can return them.




10)Make sure that you see a physio that knows about SPD and get your diagnosis, once diagnosed seek manual therapy, acupuncture and other things that help you, and more importantly seek the tests that you will need if SPD continues post birth. These tests are a STORK X-RAY (stand on one leg scan) of the pelvis and is the only one that can show up SPD as your in asymmetrical position, and rheumatologists etc for any underlying joint condition tests like HMS (HYPERMOBILITY SYNDROME), Fibromyalgia, Ehlers Danlos Syndrome, P.o.T.S and so on.




This is your 1-10 Guide, once you have your tests and everything has been diagnosed you then have concrete evidence to apply to DLA, if your refused, APPEAL straight away, this is VERY COMMON.


LAST AND FINAL IMPORTANT NOTE:
MAKE SURE YOU ARE AWARE OF WHAT YOU CAN AND CANNOT DO DURING LABOUR WHEN YOU HAVE SPD:




Best ways to recover:


1- keep your legs in a symmetrical position and make sure that they are measured so when you have pain relief you know how far they can widen prior to pain kicking in. (As once you have pain relief you wont be aware)


2-NO STIRRUPS


3-DONT REST legs on nurse or nurses shoulders.


4-NO lathatomy position.


5-No intervention if baby isnt coming out, go straight to C-section, as i have found it common that cords get tangled and you want your baby to come out safe. As well as that any interventions including forceps can worsen and lengthen your SPD.


6-Keep in a comfortable and symmetrical position at all times, even if on all fours is working for you.


7-IF you need a C-Section, make sure the surgeons know that you have SPD and that your legs need to be taped together or kept in the same symmetrical position at ALL TIMES.


8-Take your time to recover, SPD victims find it very painful to try and stand post c-section and some post birth. Plenty of rest. Take it slowly and if you need your wheelchair or crutches state so.


9-I have a birthing plan on this blog, click birthing or birthing plan on the right, this is an example and you can use it to write yours. This makes sure ALL medical staff are aware of SPD as shift changes can lead to confusion. LAMINATE it! (Birth can get messy) And bring atleast 5 copies!! Keep some in your actual notes, in the file at the bottom of the bed and keep one at your bedside table! 




10- ALWAYS make sure the buzzer is within reach at all times, as nurses dont like it when you have to shout for them, even if your disabled or ill with SPD.






All of this is suggestions as i am not a medical professional however i AM a victim of HMS and SPD, and i HAVE experienced all i have declared and the evidence is provided when you follow my story on this blog.


I have studied SPD since, for 3.5 years now and I have founded a charity to try and help women and prevent the incidents, rudeness, disability discrimination, and malpractice and abuse re-occuring to more innocent victims of SPD.


SPD is NOT a condition people would WANT to fake, nor is it a GOOD thing.
Its life changing in a very negative and destructive way and ALL SPD victims HAVE to recover from their experience of having it, or accept they have it if longer term, for the sake of their child(ren) and families!


Yours Truly.


The lady behind it all.


Mrs. S.


<3


P.S. No names, places or personal information is provided at any part of this blog about any of the professionals mentioned or where they practice. This is because who they are, are not important, what is important is that people like this exist all over, and we need to be aware of people's experiences with them and how to deal with them and change things, so that you can have the best experiences possible and prevent abusive people from taking advantage or  abusing you for longer periods of time. I thought i could trust this Dr. and it was devastating, but if i had seen sense and realised that he was doing what he was behind our backs INSTEAD of DEFENDING THIS DR, to my midwife and others, then we could have changed Dr's sooner and avoided HIS ABUSE!