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.

Sunday, 25 July 2010

LOCAL ARTICLES REGARDING DISABLED ISSUES

I have read and responded to an article posted in my local towns newspaper, and i have also found another response which I thought was interesting.

The original article:

"Can We Afford This Level Of Care?
Thursday, 15 July 2010

...Dear Sir,
Reflecting on the current need to cut costs to reduce the country’s enormous debt I was drawn to an instance which bears investigation.
I live near a bungalow which has been purchased and converted to house a disabled person. I notice three staff in attendance 24 hours a day and if you calculate the cost of the house and the salaries of all these professional people, it is colossal.
Whilst I agree with the policy of accommodating disabled people within the community there has to be a limit and a sensible economic approach especially when NHS funds are stretched to the limit.
Concerned
Name & address supplied."

MY RESPONSE:
"Don't Make More Problems for Disabled.
Friday 25th July 2010
Dear Sir,
I am a 23 year old new Mam, a lifelong Newtonian, that has recently become disabled for life. Due to it being a mobility impairment people have tended to assume, because I look... OK, that I can walk and do things like everyone else, but that is not the case.

I strongly rely on ‘Carelink’ and most of the people I know pay for the use of ‘Carelink’, which is an emergency system to which you can press a button and someone can attend your house, which I have used in instances of falls etc.
I do not appreciate your reader’s inference that levels of care for the disabled should be reduced. I personally live in a 2 bedroom house and have fought 15 months for a stairlift as I was not offered a bungalow. Luckily my husband is my 24/7 carer but not everyone has that privilege or ability and he has to do the majority of care for our 8 month old son,* a pregnancy which was not planned*(correction below) as I was self employed!

I cannot comment on this specific person but two people are needed to use a hoist. There are private companies that provide this care and if it was stopped or reduced, there would be more unemployment.

Since becoming disabled I have received abuse even at times when we have been using services. We have been shouted at directly near our baby boy which we did not appreciate. We have spoken to managers and owners of some places, where we have received offensive remarks and suggestions that my husband uses service instead of me.

We are adults that have gone from what you call a ‘normal’ and independent life to one of great difficulty. I know of another lady who suffered abuse toward her disabled child, and this needs to STOP!

There are people out there abusing the system, fraudulently receiving benefits, and I feel your reader is targeting an area he knows nothing about. Some disabled people pay for their own care and he assumes money to provide care is coming out of his pocket. His opinion would be different if he were in the same predicament.

I helped disabled people into employment prior to becoming disabled, and now I am offering an online support network to other mothers suffering from similar conditions to mine. The statements made just increase problems for the disabled. There are less services for us already than you think and we have to fight for everything.

I am still waiting for much needed services including a powered wheelchair. It is difficult for one person to push a pram and their partner in a wheelchair at the same time. Disabled people have enough problems - please don’t make more!

(MY name was printed HERE)
Address supplied.

Correction: * a pregnancy which was not planned *:

"i have requested a correction to be printed next paper as our son was planned what i said was that 

"THE DISABILITY was NOT planned as you dont choose to be disabled." 

- just some confusion there.... i became disabled during my pregnancy so that probably caused some confusion!"



ANOTHER RESPONSE:

Cheaper to House Disabled People in the Community.

"Dear (Editors name here),
...As a disabled person living in (towns name here) I was extremely concerned to read the letter headed ‘Can We Afford This Level of Care’ in your issue of July 16th.
The writer of this letter questioned the economics of allowing a severely disabled person to live in their community, supported with care 24/7, as against institutionalised care. Institutionalised care was not directly mentioned but presumably this would be the alternative envisaged by the writer.

I feel saddened that the writer should consider that a disabled person should be excluded from their community on the basis of pure economics.
I have always considered (towns name) to be an inclusive and welcoming town, containing as it does the wonderful (specific centre with disabled facilities named here) which has done so much to promote inclusivity for people with disabilities. I’m very concerned that an individual should feel they have the authority to question another person’s right to live in the community, based on pure speculation.
In point of fact it is substantially cheaper for a person to live supported in their community than in institutionalised care. The most human and caring course of action is also the most economical, thankfully.

The 1991 Community Care Act closed hospitals and transferred care for patients into the community, because it was cheaper. (This was an Act instituted by a Conservative Government, remember.) You can be absolutely sure that the most economic course of action has already been chosen.

The original letter stated that a bungalow has been ‘purchased and converted to house a disabled person’. Purchased by whom? It may have been purchased by that disabled person, perhaps funded by parents or a legacy. If purchased by the local authority the disabled person will be paying rent and the bungalow will be a valuable addition to social housing.
Regarding the salaries of the ‘three staff in attendance 24 hours a day’ quoted in the letter. I presume the writer means one member of staff present 24/7. Who would employ these carers if they were not employed by this disabled person? Would they all in fact be claiming jobseeker’s allowance and council/housing tax benefits?

We’re rapidly descending into a country of informers and malcontents. Why don’t people go after tax cheats with the same tenacity they uncover ‘facts’ about disabled people? This country would be infinitely better off if the tax cheats were brought to book. However, I would not think of writing in to the local paper suggesting that one of my neighbours was a tax cheat.

I mentioned that I am disabled. That phrase might lead you to assume I do not work and exist on benefits. In point of fact I work both from home and in the community in a highly professional and demanding job and contribute significantly to the local and national economy via the taxes I pay.
If you are tempted to write a letter based on pure assumption, think of how hurtful and inaccurate those assumptions might be. Then do your homework and write a letter based on facts.

Disabled Resident"
 



I wrote my response to open peoples minds, as i do not blame people for sticking to what they think they know as they have not been shown anything else, you are not taught about disabilities or disabled awareness and i merely think that it is a case of not being familiar as if people were disabled or knew disabled people they would be far more understanding as they observe various problems that the disabled have to face, some disabled people cannot work, some can, but this should not mean that one person is better than another.

Disabled people have great difficulty in everything and i can only suggest you read this theory to open peoples minds and help understanding regarding disabilities:

It is called the Spoon Theory and this theory shows the examples of restrictions due to physical impairments or exhaustion problems:

It is also known as an article called: BUT YOU DON'T LOOK SICK?
But You don't look sick?
Copyright: 2003 by Christine Miserandino butyoudontlooksick.com
A story that helps the disabled not just SPD sufferers:

Hope this helps you understand better!
Update:

I personally still have some hurdles to tackle, my conditions have been diagnosed but I still need the Ehlers Danlos Syndrome confirmed as I am currently really ill suffering from a 'flare up' and my husband did some research and I have many indications and evidence that it is EDS.

I phoned 'person B' at the council regarding my bathroom and toilet being inaccessible, and they stated that they knew they needed to put in grab rails (still waiting) and take a look at the bath but they did not know they needed to look at the wall in between which is plasterboard and restricting me disabled access to both facilities. Person B stated they would contact Person J at social services who is my O.T and discuss further as I said we have now been waiting 18 months and Person B said Person J had not marked my case as Urgent!

This was over a week ago and Person J and Person B have not contacted me further so I am going to contact Person J tomorrow, Person J should have come out one wednesday but marked it off thinking it was about the stairlift when it was to bring Person B from council to see to the bathroom and toilet problems.

Person J stated they were very sorry.

I hope I get some answers tomorrow as I will have the Rheumatologists letter soon anyway to prove what I have and that it is lifelong.

I also spoke to an EDS online support group yesterday and it was refreshing to speak to someone who understand so much they could finish your sentences regarding the problems you face mobility wise.

So no further solutions as of yet.... waiting game again....