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:




(This is a charity support group here to help you as a sufferer.)


(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


Link about DSP and SPD/breastfeeding.


More info on SPD and a link to a support forum to talk to others about SPD.


Community Legal Aid: (If you need legal advice in any situation)

0845 345 4 345.

Another suggested link that my be helpful: (Scotland)


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


But You don't look sick?

Copyright: 2003 by Christine Miserandino butyoudontlooksick.com

A story that helps the disabled not just SPD sufferers:


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.


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.

Friday, 17 May 2013

Disabled women should be legally allowed to be mothers.

I don't know what the law on this is but I, as a disabled mother, clearly have no rights at the moment, when it comes to child social services preventing me to parent our child, in which I parent alongside my able-bodied husband, and have done for three years, including with his cancer, until FALSE accusations were made regarding my disability.

 Having proven untrue, and my disability is real and a needs assessment to prove my disability does not affect my parenting, child services wish to prevent me being a parent to our son, due to my disability, and it's affects.

My fellow SPD bearers and individual, inspirational, heroes.

Thanks to everyone who have been so cool when I and my husband have been amongst a storm. Things are still a little chaos, well in all honesty there is NO little when it comes to chaos. The dreaded meeting is tomorrow where we put forward our request for a new needs assessment and fight the fact that despite all little info and lack of factual info, child social services, still aim to issue court proceedings known as Public Law Outline, to issue a residence order to my parents, making them have parental responsibility legally for our son and for him, not to, return home into our care.

A legal advisor, says despite the meeting tomorrow they feel that child social services, will go ahead neverless, and issue court proceedings anyway, however we will not give up on our son who only today said he wants to come home and live with us 'forever'. *sobs* Is this not a human right?

This is not easy for me and I need to keep my calm and be up at seven a.m. because social KNOW I STRUGGLE (most days) to do mornings and I will be in pain by forcing myself in doing so especially after being recently hospitalised and up ALL night, last two nights in agony, not pain-agony!

When will they ever learn? ! ?

A traumatised mother wanting her now traumatised son home before child services do any more damage.

But Thank You to all of you who have supported us, said kind words, texted and phoned and e-mailed and messaged me, and for all the encouragement to stay strong. If I ever finish this book about this, I will dedicate it to all of you. Preferably all by name. We will see as there may be too many, that'd probably make a full book listing you all together!

Love always,

(My name). (Son's name)'s mammy. Mother for life, love my son for life and spend my life ensuring justice is sought and my son, my miracle, my (son's nickname), comes home, 'forever'.

Thursday, 9 May 2013

I am NOT my disability...

I was in hospital recently and I am not well :*-(     *sobs*

This makes it much harder to cope with defensive and slight ignorant people who are supposed to help you!
I was tired and hurting and they were stressing me out no end repeating things we have already heard/read and already suffered through.

My disability is not me!

I am not being selfish by discussing it after all it is the defined problem that has everything to do with whether or not our child is to return home and perhaps I wouldn't need to talk about it if someone/anyone had asked me about it instead of just judging it/me.

Have they not discovered that assumptions are not facts and only lead to incorrect decisions due to being based on incorrect informatio.

Perhaps instead of jumping ahead why not put in writing in detail the issues and stick to them and not state more issues, once issues are resolved!

Perhaps also have a meeting with adult services and give them issues in writing so I can have needs assessment again, and parent our child with the eligible services I'm entitled to as a disabled mother.
Then all is solved and our child is home. But no, instead, keep adult serv's out of loop and penalise me for having a disability and not being able to be able bodied, but also being prevented from services that would resolve any issues presented.

Waste of court's time and money if it goes thus far.

 *prays for issues written down and stuck to, and prays for meeting and needs assessment again*

 Previous assessment included support from my parents, however child services does no longer allow (after needs assessment was competed, this choice was expressed, out of the blue) ...child services does no longer allow my parents as part of our support network, hence disagreement with needs assessment, yet keep changing issues whenever we resolve them.

I was told to my face early on, we'd never get our child home, it seems they are going to great lengths to prevent this! Why not just allow us the support we are entitled to by law and send our poor child, whom has leukemia, has had for a year now... send our child home where our child needs to be, and don't ever tell us my parents can't have our child a weekend now and then, they're the childs grandparents after all, and they reside very close by.

I hope this surreal and traumatic experience draws to a close soon, as I am a strong woman and I know my child needs me, or else I would be feeling as if I am not allowed to be disabled and the only way to get rid of a disability is to get rid of the person. Child services should not be allowing this to be the only option, as I am very concerned for the mental health and wellbeing of other disabled mother's who may be in this situation, again due to the lack of knowledge that child services have of disabilities. Hence they should be working close to adult services who have training and specialise in supporting disabled parent(s), otherwise we could well have disabled mothers committing suicide as the only option to have their child(ren) return home, in my case to their able bodied father.

We both have successfully cared for our child with the steroids etc, for at least two months prior to acting on wrong advice given to us by a member of oncology staff. Due to this, they admitted their fault and stated that the hospital assumes parents are aware of children with leukemia, and that they are not permitted suppositories. We administered one infant/ baby suppository and it lasted all of three seconds, we followed all of the information that was supplied to us at the time and we faced a very intense and detailed police investigation in which no further action is required.

There are lots of false claims written by the ex social worker that people are not correcting and are taking as gospel. In which we have no chance of having a fair and accurate investigation due to these issues. And some breaches of confidentiality.

We are being therefore penalised for something we were told our child was allowed, we were told our child "was allowed laxatives" and to expect this need as a result of his chemotherapy. We only had the info we were given to go off because we were told not to Google. I advise anyone in this situation to Google because hospitals never admit their neglect. All over the issue of money and reputation, I believe. Frankly, I won't sue no matter what, as all we want is a normal life full of our child's presence and every second our child is awake we will tend solely to the needs, as before, as our child is our life. This child is our miracle and we may never have any other children, and we are missing important milestones in our child's life.

 I feel as if a part of my soul has been stolen and in all honesty when my husband and I are at home it is so silent and empty, it as if and I hate to say this but it is true, it is as if our child is no longer alive. I sometimes find myself in the child's bed, sobbing into the cuddlies and I even sleep with one of the child's favourite elephant comforter he names twinkle as Mr elephant has stars on his ears.

Please let there be a God, and please let him hear our prayers and my cries.

- from a mother, reaching out for the truth to come out and our life returned from us, we will never be able to replace the lost milestones but we can create new memories and witness other milestones.

For my child, know that we love you so very much and I would do anything for you, and I wish I could trade places with you so very much. And I wish we were allowed to take you to hospital using disabled hospital transport so I could come to your hospital appointments most of the time, I'm so sorry child services will not allow this. Perhaps in the future if *hopefully when* you come home.

From my heart to yours, I feel your pain every second and I promise you I will spend the rest of my life fighting for you if that's what's needed. Because YOU ARE my life, and your daddy's too.

Friday, 14 September 2012

Our miracle son, cancer, disability, SPD, Love and Family..

Help us someone...

Some one please help me, as i am suffocating from the system we have in place, a system in which is breaking me as a person as i am already broken as a mother as my son has cancer, this is such an emotional suffocation of hurt for my son and the wish i could change places with him, the hope, our miracle that is our son, can survive and the maliciousness of humankind that has shown its ugly head at
a time our family should be supported, not attacked, could be somehow hidden from our son, so we can protect him from it, but it is him that suffers with us.

We should not be investigated or have a child protection conference for a child that is already protected by my husband and i, and his grandparents.

I would DIE for my son, i would take a knife, a bullet, anything for my son to be able to live, even if for only a second longer than god has planned, because my son IS my life.

He IS our life, and they are all asking us to forget it is happening, put it in the back of your head, but how can a mother forget what they are doing to her son, more so than us as parents. I can never forget about my son or how they are forcing him to be separated from his loving parents who have never harmed him at any time since he existed and never will, and as a survivor of abuse, and i am lucky to be alive, i am more so than ever more protective of my son.

We do not want him to suffer or experience pain, we just want him to have the best life possible.

And this pain inside that suffocates me, doesn't leave with every tear shed, or every scream or sob, or the heartache expressed. My son has cancer. Nothing can take away the pain i feel for my son is going through hell and back.

He deserves better from the services put in place to support children. He deserves better from the nurses caring for him, and most importantly, from me, for bringing this amazing and pure child with a perfect heart and soul, into a society where safeguarding childrens teams and nurses who are supposed to be there to help, protect, etc, are the only ones who are damaging his wellbeing and his family when they should be able to see the wonders we see in our son, and we hope they will come to see who we are as people, as they don't know us right now, so we feel they should atleast get all facts before considering doing anything further to their investigation.

Assumptions have damaging consequences, and once acted upon, the damage will have already been done, even if they learn the truth.

All mainly because i have a disability which is misunderstood, and for those that said its not about me, its about our son, then why is my disability so widely criticised by speculation and misguided assumptions? (i didnt see my OT being asked to report on how she saw our son as a happy child cared for by his mam, but instead my disability ) and i am hurt as a result. Yes i will do everything i am told by social services, because my son IS my life, and no i wont discuss anything discussed in the child protection conference, not because i am not allowed, but because i will go the the ends of the earth to protect my son and i will never give up until he is back home, safe, where he belongs.

More importantly, i am disheartened that the very people there to help assist doctors cure my son, could hurt him like this and us so much through speculation and assumptions imagined by them... and as we all suffer and face their consequences, they go home at night, to their children, all fine and happy and well, and i dont know how they can sleep at night after what they've done.

My son is my life, he comes 1st, did so before even born, very much planned and very much wanted (not that thats important as long as the child is very much loved) in which he is and we just want him helped, want him alive, and want him to be safe in my arms, where i can keep him safe and know he is safe.

He knows i love him, and thats what counts. Who do others think they are when they make assumptions about people they don't know? And, when it comes down to my son, it comes down to my husband and I too, because we are a unit. we cannot be separated, perhaps by ignorance, naivity and the country's system, but not by spirit, love or will.

My son carries our hearts with him and we carry his, i feel his pain, i feel his suffering and it is so hard as a mother to see him go through hell and back with cancer... to suffer as he does. And still yet, despite all he is going through, he still paused and rests his arm on my shoulder, sensing i am worried about him and seeing gentle tears fall down my cheeks. He then says softly, "Don't worry mam, i make it better for you, wuv you mam" and he says this whilst staring me eye to eye in the face, gaze meets gaze and he smiles at me and that image is recorded into my brain and engraved into my soul as it is the most beautiful thing i will ever live to see, and i am filled with warmth and calmness as he passes me one of his comforters, known as one of his babies, given to me to cuddle. And with his tiny arms engulfing me close into him, despite all the tubes and sore wounds, and we cuddle.

At that very moment everything surrounding us disappears. As if it never even existed, and as we cuddle the tightest cuddle we can, despite both being in pain, despite everything, my son, at 2 years old, shows more love and compassion and understanding and comforting, than most people i know and he is wonderful, and it shows great strength, and great intelligence and love that my son at 2 years old can comfort me and hold me and make me feel better, just as i with him when he needs me to.

For that split moment my son and I share, that feels like a lifetime, we share this warmth and affection and nothing else matters, we are one, our hearts beat together and we breathe each other in.

We are in a completely different place, space or time to the rest of the world and the warmth that glows from my sons spirit reminds me that these 'professionals' know nothing. If they were right, he wouldn't even exist right now, and he reminds me of the good that does exist in the world, and is living proof that miracles do happen, and can happen if you believe enough and feel it's your life's purpose to be a mam, you just know in your heart, that you will deliver something remarkable one day, the gift of life, that's given by two loving parents who will grow old together. This is our very own miracle, and we feel blessed everyday that our son exists. That we knew he would and some things you just sense. Instincts accurate and important and is given to each of us as well as the gift of life, so please remember we are all people, and we all have families, and to treat each of us like people, like how you would treat your family. I know my husband and I do this, because we genuinely care and will help people as much as we can. Please help us to pray for another miracle.

Please pray for an important miracle, a very precious and hoped for miracle: the miracle of survival in which i ask of you, to pray that our son can survive this cancer, be alive into adulthood and experience life where he can be safe by our side, where most of all we can keep him safe, somewhere he can always stay.


Thank you, and please believe as miracles do happen when you least expect them to, no matter what anyone surrounding us at this difficult time does; as long as our son's given the miraculous gift of survival, i dont care what else happens. As if i could trade places with him, i would in a heartbeat. There is a difference between putting children first (which were accused of not doing with our son, by the strangers that do not know us, in the 1st week of our son's diagnosis, where we sat by his bedside and made sure he was comforted anytime day or night) and there is having a child that IS first, was born a first, and will always BE first, no matter what people choose to believe, as he is the center of our universe, and there is nothing else more important than him. And if our love, care and empathy cannot be seen in such circumstances, then that's not our fault, as it is there and always will be, for those who know how to look.


Love you son

-mam and dad.

Thursday, 22 March 2012

Focus on the Positives no matter what life throws at you!

We have moved home to a new property that meets my medical needs and we couldn't be happier here. Our son is blossoming into a little boy and he will be starting nursery next year! *shocked face here*

Where! Oh Where! Did the years go?

Feeling the same? I know how you feel!

We are making new friends, old friends are moving on, and we are just following the path that life is leading us right now, it is not all sunshine and rainbows, we do have obstacles surpassed and more obstacles to conquer, but we prefer to focus on the positives and we find the negatives usually get sorted out when we're face to face with them. So it is nice to focus on the positives and be cheery and chirpy and looking forward to many years to come, growing old together as man and wife, watching our son grow up to be a man and filling our parents shoes when we reach their age and our son has a life of his own. 

We all grow, we all move forward, and life is quite short despite it being the longest thing we do, so it's better to focus on the positives, focus on family, focus on the things we enjoy that include photography and art, sharing our life with our friends, new friends, old friends, past and future friends and it's better to forget the negatives that we have conquered and not think about the negatives we have yet to conquer but think about each other, our aspirations, dreams and inspirations. 

Creating new art and new work. 

And celebrating times of celebration whenever and as much as we can, even if you cannot find much to celebrate, celebrate family, being alive, being here, having had the chance to experience parenthood. Health not wealth, as you cannot buy happiness and you cannot buy love and you cannot buy good health or any of things my husband and I value. 

We want to live a humble, comfortable, happy life. Nothing more.

And right now, we are grateful to be here, at this stage in life, with a son to cherish.

What more could we ever want? 

Happiness is something we never take for granted and we appreciate, and it is not always easy but we work hard at things and that's taking pride in what we do, passion for what we do, and loving what we do, listening to people and understanding one another.
" It's not the conflicts or problems in life people should dwell nor focus on, but in fact HOW they are resolved that is most important. With Respect and Understanding and sometimes Compromise. " -This is one of MY own quotes I have shared for you to enjoy.

 Quoted since 2007. A quote I swear by. I think it puts things into perspective for a lot of people.


Friday, 3 February 2012


Well, on a very much used Social Networking Site starting with 'face' and ending with 'book', we had yet another of our SPD AWARENESS DAYS!

For those that are not aware:

SPD AWARENESS DAY was set up by charity Support Pelvic Dysfunction and this blog, to be every FEBRUARY the 1st. (WHY THIS DAY? because that's the day we thought about this fantastic awareness idea that would help many SPD victims find us!)

Every FEB 1st people on this networking site set their status to say something along the lines of:

"Well it's another SPD awareness day started by Support Pelvic Dysfunction! Please REPOST this as 1 in 3 women develop SPD, approx 20% become disabled with SPD or develop long term SPD. Help is available at www.supportpelvicdysfunction.co.uk Let's raise some awareness today! HAPPY SPD AWARENESS DAY! ♥"

Then people who WANT to help click SHARE and post it to their wall or set it as a status.

This year it was also shared on another networking site as a 'tweet'.

We would like to thank everyone who has helped with this awareness as part of our ongoing awareness campaign and would also like to achieve more sharing next year!

There are many SPD victims that may not know of SPD, may not know they have SPD, or whatever their circumstances may be suffering alone and thanks to idea's like this, these people can find out about the charity and get the help they need and deserve!

We appreciate all who were involved and fingers crossed for next year!!!

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.


Complaint below:



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)"

Thursday, 1 December 2011



AND DON'T FORGET TO SIGN THIS IMPORTANT PETITION, THIS WILL HELP FAMILIES LIKE MINE GET WHAT WE DESERVE!!! http://epetitions.direct.gov.uk/petitions/20542 The Government should increase Carers Allowance to reflect the amount that carers save the nation by not relying on the NHS