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, 12 October 2009

And I actually thought social services were here to help people, bigger fool me!

I phoned my social worker, immediately she seemed to want to hang up on me and kept demanding who advised me to contact her. So I told her. She was still then more in the attitude of I cannot help with stairlifts, which was repeated throughout the call. I understand there are notes on her system but it would be nice to have the opportunity to explain our circumstance so she can make a decision as to what to do next if anything.

She kept asking me what I want from her (in different words not that it matters anyway as its plain english) and I kept saying what can you do? Till the point I said well what is your job role??

I have left the conversation with her, more angry and upset than I was prior to it, feels like I was talking to a wall, and that as far as she is concerned she cannot help etc, although at one point she did say over and over again she feels the need to contact my midwife to state about my nutritional needs etc, and that she will be passing a referral to Family Welfare social services department (again forgive me if i have worded that incorrectly) she kept pulling me up on the way i worded things.

E.G: I explained that 'J' the O.T at the social services had said that 2 years is not defined as a long term disability and that I have to hire a stairlift, her response was that she hardly believes that 'J' would have said that and probably said that the alternative is to hire the stair lift.

What is the point in that? Does she 'C' not realise that either way my only option is to hire a stairlift if that is the case??

I felt like she was patronising and talked down to me as if I didn't understand that she couldn't help me or pick up on the fact she wanted to hang up, yes 'C' I did pick up on that fact and I stayed on the phone to try and make you talk sense so I know where I stand.

I did at one point say to her that departments keep passing me from pillar to post, we are banging our heads against a brick wall and they keep saying 'what do you want me to do about it' in which she got defensive and stated that she is not saying that, she is in a grey area here as I am not permanently disabled and she deals with people who are.

Well when I asked what her job role was she could have explained that earlier so I didn't make such a friggin fool out of myself trying to get some advice or contacts to other departments who MAY ACTUALLY be able to help us!!!

Its insane!

I wish I could have recorded the call and typed it all up word for word, so you could see for yourselves her not listening, grasping points and continuing to repeat herself which just incase I wasn't already aware that she was doing that her stating that 'without repeating myself....' and because she was nor here nor there with her sentences I asked her upfront will she or will she not be contacting my midwife (I have good reason for her not to as she was originally contacting her RE: SPD and I kept stating that won't help as the midwife has only seen me a couple of times, I have had a lot of cover midwives, I have had problems with that midwife and her unprofessional statements i.e. ''you are putting you and your baby at risk'' repeated over and over as i cannot walk as obviously it's my fault my pelvis has decided to dysfunction, amongst other things she has said; and that I have found her to be unfamiliar with severe SPD.

'C' responded, I think we had already agreed on contacting the midwife... which we hadn't as I had said the above !!! OMG! I am sure I am speaking english here... someone help me ...…

One thing she advised despite me saying I have contacted community legal aid, benefits enquiry line, job centre etc is to contact welfare rights. So I did today and they hung up as they are busy, they are open 9-3 and said that less busier times may be between 10:30am and 14:30. It was 13:45 when I called. So some good they were...

She also kept saying to me (which really upset me and at one point I did say to her I am getting upset now!! If your condition is as severe as you say it is why have you not been hospitalised. So i told her, they cannot do anything more for me and keep passing me to pillar and post and the nurses on the ward i was on last said they couldn't even help me sit up in bed due to a new policy/law/whatever that states they cannot aid people incase they pull their backs, in which 'C' just repeated the bit about pulling their backs and then went on to repeat about not helping me with the stairlift, and if she did read this blog at any point I am sure we obviously didn't have the same conversation so I assume she would have a different recall on what was said anyway.

So great help.... yeah thanks. What are you paid for again? Oh helping permanently disabled individuals, which would have been useful at the beginning of the call along with SOME DETAILS about who the h*ll can actually deal with ME then!

-Frustrated and upset.

I had told her during the call that I am now depressed as any sane person would be and at the end of the call I said that sometimes its nice to be able to talk to someone to seek advice in which she interrupted me with: Well, you have your husband haven't you?

So I replied with: yeah but I am sure he is as upset as I am and needs to probably talk to someone himself, to which she then said:

Well you have said you had psychological intervention in the past haven't you? pause... without repeating myself I suggest you see your GP (as i already said i was) and tell him. (as to infer that she doesn't want to know and again talking down at me, has she not read up or had training in sympathy, respect or even transactional analysis???) She may as well have just said, I am not a counsellor I don't care it's not my problem....

Thanks!

My husband heard the call and his response is : "Why the h*ll didn't you just hang up on her in the first place?"

I guess it would have made no difference if I had, I may have felt a bit better at least if I had!