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, 1 January 2012

RE: PREVIOUS post regarding disabled being non-equal citizens:

In response to the post i made previously in regards to how disabled people ARE NOT equal citizens unfortunately, i have taken action today and put my thoughts accross to my county council.

ALL details and names have been removed to protect identities and to follow the rules of the blog that i established based on morals, but the opinions i have and how i have put them accross has been kept as i said it.

Please read on and i will update you in regards to what reply i get, still following legal guidelines and protecting identities.

REMEMBER:
PLEASE SEE PREVIOUS BLOG POST AND SIGN THE E-PETITION TO NUMBER 10 DOWNING STREET TO CHANGE CARERS ALLOWANCE TO A HIGHER AND MORE DESERVING AMOUNT! TAKES NO TIME AT ALL TO SIGN IT!


Complaint below:

"HIGH PRIORITY: DISABILITY NEEDS COMPLAINT AND SUGGESTIONS


PRIVATE AND CONFIDENTIAL




To whom it may concern,

I would like to put forward a formal complaint and suggestions regarding disabled tenants.

At this moment in time, disabled tenants are not being helped to the extent that other councils are helping disabled individuals:


Let me explain further, I am a disabled mother of one (toddler/child) and i live with him and my husband who is my 24/7 registered carer.
I have a carelink system installed and it cost me over £120 to get a landline when we are on low income and were deemed homeless when offered this house, needed food hampers from local rotary club! Were made homeless due to disability circumstances, from a private rented accomodation and i had to close a business i had ran.

As i was waiting for DLA which was backdated to before i moved into this property, there was a flaw in systems we fell into and could not apply for any disabled property despite being disabled and homeless because we had not at that time been 'labelled' disabled by the DLA or county council.

We were also told there would be no bungalows suitable which lead us to this property, and then a meeting regarding bungalows.

We would have lived in this property our whole lives if it had have been suitable for us. We did try and make it suitable as we were discovering my needs due to the disability.

I run a charity and i help prevent further disabilities with this charity, it is for my secondary disability which is SPD. SPD is symphysis pubis dysfunction and is a gap in the pelvis that affects walking, mobility and causes severe chronic pain. It can become a permanent disability if left untreated and if other underlying conditions exist.

1 in 3 pregnant women develop spd and if left untreated in an able bodied person, it can last over two years. Source: ACPWH medical professionals.

My main disability is a joint disability/connective tissue disorder known as hypermobility syndrome, a subtype of ehlers danlos syndrome, in which leaves me very swollen and unable to move at all at times.

At this moment in time there are no suitable bungalows, as most bungalows here are not suitable for disabled people, but are suitable for elderly people (who in all honesty can do much more than i can).

They are labelled over 60's only, have steps and are not suitable for families due to the small size.


Due to this we have to wait for a 3 bedroomed property to become vacant, and we would prefer a property that already has adaptations.

We were informed that we would be phoned when such properties become available and can view them, as they need to be offered to disabled tenants who can use the adaptations first, thus saving the taxpayer and council money.
Against the information we were given we have also been informed that at this time they are entered onto bidding systems and when able bodied people win the property they remove the adaptations only to have another family move in at a different time who has to wait OVER A YEAR for ANY adaptations including ramps (if needed). Therefore us disabled individuals have no access to and from our properties for a year or longer, as the minimum is a year!

Furthermore, for able bodied people, health and safety requires two fire exits, disabled people are only allowed one ramp and therefore are deemed less important than able bodied people and at more risk being vulnerable and unable to exit a house if a fire is in situ at the ramped area. I was scolded by a male individual who works for the council because i had two ramps, first in which was put in situ and paid for by social services. BOTH ramps are important AND needed especially when ambulances have to come for me and cannot exit because this is a small house and my wheelchair is folded in the hallway - the only place we can put it.

OR if for one reason or another something makes it difficult for me to exit one side, i can exit the other, but the point of the matter is, why are disabled people not deemed equal to able bodied people and allowed TWO fire exits, that they would have had anyway had they have been able bodied?

Wheelchair users face many restrictions in life, and i did not think the council would add an additional restriction which does in fact deem them less equal to able bodied people. ALL we want to do is live as NORMAL of a life as possible and councils are supposed to assist us with the help we need from them to be able to do so.

For example, if for some unforeseen reason i was stuck in the house with my son and i needed to exit that house, i would have to do so in a wheelchair with my son alongside me or on my knee, if there is a ramp then i can easily exit during a fire, if there is no ramp at the exit i cannot save myself or my son as my son is too young to leave me.

This is not fair for people deemed as vulnerable tenants. Neither of my ramps are permanent yet the gentleman who scolded me regarding them stated i could not take them to the house i move to if they fitted, which again costs councils more money, and thankfully the social services have stated they allow me to take theirs if it is suitable because they know the extent of stress and trauma we have endured because of the disability i have. My disability is genetic and i have had it since born, but it became severe during pregnancy and my mobility will never return.

Furthermore the houses with adaptations are placed on the bidding system, and i am informed the details should state whether there are adaptations or not, but there is no symbol or visable icon to label it as a disabled property, and able bodied people are able to bid on this property, and if disabled tenants are ill and have not been able to check the system they will not be informed this house is indeed available which means that able bodied people can bid and win this house and usually the adaptations are removed.

Would it not be easier to label properties as such with disabled icons and offer them to people bidding on medical grounds? Thus making them easier to find if nothing else?Colour coding like mutual exchange perhaps?

Or do what other councils do and as we were originally promised, phone disabled people up who are most suitable for the house for a viewing. Because it is NOT A PRIVILEGE to be disabled, we are in fact LESS abled to do things as abled bodied people and therefore NEED such properties MORE than able bodied people, which again recycles the adaptations for people who can use them, saving money where adaptations would have needed to have been removed and again installed somewhere else.
There was a local bungalow free nearby and i never got offered it or was allowed to view it nor did i see it on the bidding system because it took a while for me to be put on, and although i am on for 3 bedroomed properties, i should still also be allowed to view bungalows that are 3 bed incase one came available.

I am seeking a flat entrance and exit to property and a downstairs toilet, I need a downstairs toilet, this will make my life easier but could also take longer to find.

The reason i am seeking this flat grounded entrance and exit is so i don't have to deal with being given only one fire exit as opposed to two because i find that HIGHLY OFFENSIVE AND DEHUMANISING AS WELL AS DISCRIMINATORY TOWARDS DISABLED PEOPLE,
so when i move in and it takes a year or 17months we waited last time, to have the adaptations I NEED fitted, i can infact live downstairs meanwhile, and something close to my immediate family for extra help and assistance would be preferred as otherwise how will i wash? I also need a bath as pain relief, and a wide bath that will fit the bath lifts and a stair lift for access upstairs.

There is currently a house suitable in (place here) that has recently become vacant, it is on the same row as my parents live which they are at (place here), but i dont know if it has a stair lift and i keep looking on the bidding system only to find that there are no suitable properties as there are none in (place here) at this time, and the only 3 bed properties on there are mutual exchange and no one would exchange for the property we live in as previous tenants left it in poor repair, and we would prefer this house go to someone who can benefit from the adaptations already in situ.

I feel disabled people are being forgot about and put last, and no one as of yet has been able to give me a clear answer regarding what system is in place to assist disabled people right now, some think i can be phoned, others think i won't be phoned and if my house goes to able bodied people because theyre in a higher category than us, then i have to deal with it and wait for another.
But this system, whatever is in place right now, is not helping disabled people and it is costing the council more money!!

I hear about disabled rights lectures the council holds for staff and i would love to attend one to see what they are saying they are doing and comment on my situation confirming what is actually being done, which is very little in very long periods of time.


A year is far too long for any disabled individual to have to wait for life necessities!
!  I can in fact confirm that disabled peoples health and wellbeing are being seriously affected by this wait, for one we get low on vitamin D being housebound when we should be able to access outdoors, and this affects our bone and immunity. Why should we have to be imprisoned in our homes for a whole year because we are disabled and cannot work and therefore pay for the adaptations we need?

Surely the council would have suitable accomodation for us to wait until the adaptations are done, or perhaps do the work prior to moving in, labelling the work equal to electricity and wiring and gas and electric works? Why is it not equal to those as it is just as important? Again i feel we are deemed less important and less equal to able bodied people which can be defined in law as discrimination. I have studied some law and psychology to degree level.

The maximum i feel should be 3 months and even thats a prison sentence when your disabled / mobility impaired and needing ramps.


I feel we are therefore being punished and penalised because we have these needs
, when we should be given support, and guidance and a straight answer when it comes to what help we are entitled to and what help and support the council can offer.

In other ways the council HAS been helpful. I had a home visit, forms were filled in, but the bidding system went up the same day i phoned, having waited over 1 month, so surely it could have gone up sooner, and when we were assigned one on one support we have not been listened to, our needs were changed by opinions after the meeting, and i therefore had to re-confirm the needs we have, as they had got things wrong.

Currently my husband and i do not sleep together regularly, because of my condition, when he moves or gets in or out of the bed it hurts my joints and pelvis.

We have never kept this fact from anyone, and often my husband sleeps downstairs, but when we are re-assigned a more suitable home, we will be able to live much easier as i need 24/7 care and he has to keep coming to check on me from downstairs and help me during the night, he does not get much sleep, and he has NEVER had a day off! NOT once!

We are meeting with social services to see what help and assistance they can give us so my husband can take one day atleast, a year, off from 24/7 care.


We are also on low income otherwise we would purchase our own adaptations, so unfortunately we have to rely on council to help us. I wish i could work, i worked more than one job since i was 15 years old and studied!!! I never had a social life because work was important and i miss it and i run this charity as and when i can, answering emails at this point in time, and when we have an additional trustee they can take over most duties that will occur.

I get DLA, (benefits outlined here), and my husband who works 24/7 as my carer and my sons main point of care (mobility wise) he gets carers allowance, which is £500 to £890 less a month than he would get working as a carer under employment terms, working 9-5 each day! Which is a HUGE difference.

We do get council tax and housing benefit but we never see that money as they cancel each other out. I am talking about the money we have available to spend on food and groceries as well as clothing and supplies for our son.

Right now were trying to get a motability car.

As you can see we fight obstacles left right and centre.

What i am asking for is information in regards to what system is in place right now, what help is available right now, for disabled people. And if it is how it is outlined above and how i have been informed, i feel this needs to be reviewed and i will seek the opinions of other disabled residents in the area along with help and support from local disability organisations and charities.

I would also like to know if there is any moving support, or decorating help for people in our circumstances. Or organisations we can be referred to with exception to the local home supply charity that does house clearance and sells carpets etc as they have been no help to us whatsoever.

I am not asking for us to be priviliged, or be given luxuries, just the BASIC essentials we need as disabled tenants, and that should have already been put in situ.

I am still disgusted and upset at the scolding i got regarding the two ramps, and the stories he told of other disabled tenants getting on his nerves by occupying houses unsuitable for them and then reporting they cannot get out as theres no ramp etc.

We do not like to complain, we have enough conflicts in our life as well as abuse towards our disabilities, discrimination and insults, we don't want to have any additional conflict, we just want to be able to live as normal a life as possible and this should already be allowed and the basic essentials a wheelchair user DESERVES and NEEDS to make them EQUAL to an able bodied person , are TWO RAMPS/TWO FIRE EXITS, STAIR LIFT IF STAIRS, SUITABLE BATHING FACILITIES AND ACCESS TO TOILETS UPSTAIRS AND DOWN, OR A BUNGALOW THAT MEETS THE NEEDS OF A FAMILY OF 3! WITH 3 BEDROOMS.


I am not asking for a lift to be put in like other councils offer as well as other disabled charities that cover (place here) area, just a stairlift. If a lift was put in it would mean i would have wheelchair access to the full house which would be a benefit for me to live more of a normal life, but a stair lift although not offering access in my wheelchair, will still help me to gain access upstairs. If my mobility worsens permanently in future then a lift would be the only option, but my point is that i am happy to accept the basics, not the luxuries.

These should be defined as the basic needs of a mobility impaired disabled individual just the same as the basic needs of an able bodied person is two fire exits,  toilet, bathing facilities as defined by the human rights act.

Not much different but it would be a HUGE help.

I am keeping a copy of this complaint for future reference purposes and or legal purposes and i would like a reply within 14 days of receiving and reading this complaint.

This is a formal complaint from a vulnerable and concerned disabled tenant.

Thank you dearly for your time, and i hope i am able to receive some support and help regarding housing as a result of this.



Kind Regards,
(Name here and family names here)
(phone number here)
(email here)
(mobile number here)"
 
REMEMBER:
PLEASE SEE PREVIOUS BLOG POST AND SIGN THE E-PETITION TO NUMBER 10 DOWNING STREET TO CHANGE CARERS ALLOWANCE TO A HIGHER AND MORE DESERVING AMOUNT! TAKES NO TIME AT ALL TO SIGN IT!