Joined: 11 September 2007 United Kingdom Posts: 3057 Gender: Female
Posted: 14 May 2008 at 6:10pm | IP Logged
Hi all
Just wanted to share with you all the governments latest view/response on spd and dsp (a petition lodged and signed by many) about the lack of information and help available out there…..
I’m sorry to say it’s not a positive view or out look, outcome even… so I’m hoping when Madz gets back of her holiday we might be able to look at getting together and writing some form of strongly worded letter.
Hugs to all of us suffering out there.... just means we have to keep fighting a bit longer to get our voices and condition heard... so no change there then!
Joined: 18 April 2007 Canada Posts: 290 Gender: Female
Posted: 14 May 2008 at 6:29pm | IP Logged
I have never suffered from SPD ( thankfully)
But this makes my blood boil.
They will not fund research because it is not life threatening BUT it is life changing, and affects everyone in the family. Research would give doctors a template to work from, mothers more support and a recognised diagnosis
Another example of not enough money despite the high tax level.
Joined: 24 April 2007 United Kingdom Posts: 1937 Gender: Female
Posted: 15 May 2008 at 9:29am | IP Logged
Don't really know what to say to this.
I really thought things had moved on since I had Ruthie and had to fight for months for any acknowledgement that I wasn't suffering 'normal pregnancy aches', but unfortunately it seems this horrendous condition is still being pushed into the background.
I think it said it all to me when, at my last midwife appointment, I told her my SPD was starting to flare up again, and asked about a support belt (I have one that my osteopath organised a while ago, but can't wear that one while pg), and she said basically 'oh it's too early, you can't wear one before 28 weeks. Look up SPD online and you'll find websites where you can order one.' And the sum total of her most helpful advice......'there's not much you can do...just keep your legs closed!!!' Oh, and she gave me an A4 sheet telling me about getting in and out of cars, bed etc. I actually just bit my tongue and left - I may have lost the plot if I'd opened my mouth. Considering it's in my notes about being induced early because of SPD with Ruthie, and that I have suffered ever since, I found her advice worse than useless!
I despair for first time mums who may be suffering with this condition, yet being sent away, as I was, with no support or help. Thank goodness for websites like Madmums.
Joined: 07 March 2007 United Kingdom Posts: 116 Gender: Female
Posted: 15 May 2008 at 11:24am | IP Logged
i am incensed with anger ( hope i spelt it right!)
i think that the response can be summed up into one word, but i don't want to be thrown off site for swearing, so i will try another way. basically it is called pass the buck! they have no interest and hand it over the MRC. of course, we are now supposed to come up with innovative proposals! the bloody cheek. well they might want to turn and look the other way, but that is not going to happen! not without a fight. sadly, all of us who have spd know all to well that we literally have to fight for everything, so i guess we can manage a bit more of afight.
tsena, if there is anything i can do, let me know. this does not need to be the end of ther road.
Joined: 04 May 2008 United Kingdom Posts: 150 Gender: Female
Posted: 16 May 2008 at 4:16am | IP Logged
omg that is maddening, my friends just told me they have given millions of funding to make a robot that stirs soup or something. It just makes wonder, her brother in law is medical scientist and has had to go to utah to get funding
Joined: 11 June 2005 United Kingdom Posts: 3913 Gender: Female
Posted: 16 May 2008 at 7:28am | IP Logged
OMG, I've been there, had that and I believe it is a very serious problem. I'd not suffered with it through out my first 4 pregnancy's, but looking back I did start with the problems at the end of the 4th, though I didn't realise it at the time as I just put it down to the weight at the end of the pregnancy.
My 5th pregnancy however was completely different. I started with the SPD at 14 weeks, as time went on it got worse until somedays I wasn't even able to go to bed or the toilet as I couldn't climb the stairs.
Being a single mum I struggled to raise my other 4 children but on asking for help I got nothing. My children suffered because no one, friends or family could understand my problem. I was laughed at when I eventually needed the crutches just to do everyday things. I think everyone thought I was playing on the 'I'm single and pregnant' lark, but how wrong they were.
It needs to be more widely achknowledged because if it was, things for me and many many others would be different. I struggled to get physio and any other kinds of support because no one knew anything about it...including myself!
Joined: 04 May 2008 United Kingdom Posts: 150 Gender: Female
Posted: 16 May 2008 at 7:56am | IP Logged
good lord, how did you cope, and like you say how many more single parents have to go through this alone. I wasn't even given physio for mine, but did have my husband to support me. I was offered crutches, belt, n painkillers none which worked and the crutches seemed to make it worse. I ended up lay in the bath a lot and my friends had to sit in the bathroom with me believe me not a pretty sight. Since the birth i've physio and nothing worked, the therapist even told me that it had been going on so long that it was here for good.
Joined: 14 October 2006 United Kingdom Posts: 447 Gender: Female
Posted: 29 May 2008 at 2:51pm | IP Logged
How do you think I felt when we got the response girlies - it was my hubby and I that started the petition!! Needless to say it's typical of the respnse that we've had all along.. As most of you know, it's a condition that's not properly recognised and you have to fight all the way. The petition doesn;t allow you to respond directly (which again is unfair) but we're busy trying to dictate a good letter to try for parliamentary support, whether that be through our MSP or directly to the health minister I don;t know.. How can they possibly say it not 'life threatening or changing'? It is life threating for some because they end up so depressed through it and it is life changing because you can end up in a wheelchair 24/7 having to get help getting dressed etc!!! Mind you, if we were recreational drug users they'd spend a fortune looking into our childhoods to see if there was anything there they could blame!!
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Topic: Government's latest response to SPD & DSP
Don't really know what to say to this.
believe me not a pretty sight. Since the birth i've physio and nothing worked, the therapist even told me that it had been going on so long that it was here for good. 
