I Risk My Life Everytime I Venture Out | #FitToBurst

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Did the title grab your attention? No, it wasn’t clickbait. No, I’m not being dramatic and no, there isn’t another way out of this vicious cycle that I haven’t spent 14 years trying to make work to improve my situation.

My name is Fi, I’m a 30 year old Mum of 2 little girls living in Bolton, Greater Manchester and I was born with an extremely rare, progressive muscle-wasting condition. I am totally dependant on a powerchair to mobilise, am completely non-ambulatory (unable to walk) and need help with most aspects of daily life. Including toileting.

Maybe that last sentence made you cringe. Us Brits don’t like to talk about such “crude” things as toilet habits, but we ALL have to go. It is a basic human need that needs met and we all have the right to suitable toilet facilities that are safe, hygienic and enables us to maintain our dignity. All except those who cannot use a bog standard disabled loos that is!

Up and down the country parents of profoundly disabled children are getting their #PantsDown4Equality in order to use shock tactics to get the powers that be’s attention to the fact the very toilets their children need, Changing Places are very few and far between. Whilst profoundly disabled adults like myself, Carrie of ‘Life On The Slow Lane’ and Kerry of ‘My Life, Kerry’s Way’ are bearing all in articles such as

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“It’s horrifically painful…” the disabled women forced into unnecessary surgery – The Guardian

Disabled women are being let down by public toilets everytime they get their period – The Pool

Aswell as appearing on news stations such as ITV Granada, to get society to realise there’s a very REAL and desperate problem here that needs swiftly rectifying before somebody loses their life.

It was only last week 13 year old George broke his leg after his Mum couldn’t find a nearby Changing Places toilet. In desperation his Mum decided to lift her dear son onto the loo to save him the humiliation of having an accident in public, only the unthinkable happened… Due to George’s low bone density (very common in those who are non-ambulatory), his femur broke simply from being manually lifted from his chair to use the toilet.

George’s Mum, devastated, recalls the moments after the accident her son screaming in pain, “My knee, my knee! I’ve broken my leg Mum!”

George was so panicked he didn’t care his dignity had just gone out the window. Still having to do his business, he encouraged me to get a waitors help to lift him from the loo back into his powerchair, where we put ice on it right away. Miles from home I had no choice but to take him to the A+E. I rang for a taxi and the driver was so amazing that he wouldn’t accept the fare. George was admitted and the next morning transfered to our local (Southampton) hospital nearer home, where his regular orthopedics team is. Dr’s predict George will need 6 weeks or more in plaster, followed by months of stretching and physiotherapy before we can even think about getting him back in his stander and back to baseline. I have not lifted my son in over a year prior to this, he’s fully hoisted now. In this situation I felt I had no choice, he simply needed the toilet then and there, and couldn’t wait until we got back to the hotel where I’d hired a hoist. We all get caught short at some point… If there was more Changing Places, this would of been 100% avoidable. I would of hoisted him using the hoist provided in the safety of his sling and his dignity would of been preserved.

Every major town, city or large public space should have a Changing Places toilet by law! 

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Photo Credit: ‘Ordinary Hopes’ Facebook page with permission of George’s Mum

George’s Mum shouldn’t of been put in a position where there was no suitable toilet facility nearby for her son. As it stands there are only around 1,400 registered Changing Places toilets in the whole of the UK. Incidents like this are prime examples why this is such a desperate situation for families. Did you know ¼ of a MILLION profoundly disabled children and adults in the UK need a hoist and adult size changing bench to meet their toileting needs away from home?

Those that know me may remember from leaving off in Part II of my last blog on this topic, I was being made to jump through hoops like a preforming monkey via the NHS, trying to convince them to put me through a medically unnecessary surgery to insert a Suprapubic Catheter (SPC) through my lower abdomen. I get why they’ve made it difficult for me, I do! I’m high risk under general anesthetic, I’m respiratory compromised and use a ventilator 12hrs a day and I am NOT incontinent. You’re probably thinking now I’ve lost my mind. Why would I want this surgery so bad? I wrote my last Changing Places related blog in Feb 2018, I’d requested the surgery way back in July 2017. It’s now September 2018 and my referral (finally at the RIGHT hospital to meet my complex needs) has been rescheduled FOUR different times because this apparently isn’t urgent.

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Photo Credit: Google – Suprapubic Catheter kit

All Urology, GPs, District Nurses etc involved in my care are very worried about my recurrent UTIs. Having almost back-to-back infections for 14 years caused by having to hold it all day, every day I wish to venture out the house has took its toll on my already immunocompromised body. I’m allergic to the cillens so I can’t have those, I’ve become resistant to 8 other common antibiotics. They told me last year they’re at a point with me where they’re running out of treatment options. I’ve spent the last 3 weeks on 2 courses of antibiotics, only to finish and still be no better, in fact the infection is so bad from it carrying on so long. Obviously these antibiotics no longer work, the GP now believes I’ve developed yet further resistance to another “good” one that Was working for me over the past 3 months. I have red flags for mild sepsis. While the GP awaits lab work and urine culture’s to see what very limited antibiotics we could try next, if I get worse over the weekend, he’s told me I must call an ambulance to get to A + E as soon as possible. Sepsis Kills!

Although I fight along side so many wonderful and fierce campaigners for Changing Places to be made MANDATORY, the truth for me is my body has endured far too long without these facilities. My body won’t wait any longer and that’s why I’m forced to opt for life threatening surgery to give me a way out of needing a hoist and adult sized changing bench (only provided in Changing Places facilities) to toilet with dignity. I will never stop fighting along side great voices like Rachel of ‘Ordinary Hopes’ and Laura of ‘Mum On A Mission’ just because it’s sadly too late for me. We are paving the way for a better future for this generation of disabled children, so they won’t need to spend a life time being changed on a filthy toilet floor or opting for surgery for something society could easily rectify.

If Britain stopped having standard toilets as being a ‘human right’ in all new public buildings, there would be an uproar. Who am I kidding? It wouldn’t happen! So why is it happening to us? What makes ¼ MILLION disabled people so unworthy that the government doesn’t automatically agree that Changing Places is our access to a suitable toilet and therefore OUR basic human right? Words fail me.

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With a lump in my throat I confess my worst fear is that if I don’t get this surgery soon, I could surccomb to sepsis and my precious little girls would be left without a Mum. Being a realist, I know and accept my condition I was born with, in itself is life-limiting. I am forever on borrowed time with my family. It would be a real tragedy if sepsis through lack of Changing Places took my life sooner than my actual condition! If that happens, I hope that my story helps pave the way for Changing Places becoming a human right for people with disabilities, and nobody ever has to worry about toileting away from home or risking their lives again, the way I and countless others have no choice but to do each and everyday to live a ‘normal,’ for filling life. For if Changing Places were common place, you wouldn’t be reading about how detrimental lack of suitable toilet provision really is, right here, right now…

Changing Places, Change lives, Changing Places ultimately SAVES lives!

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Please SIGN the Changing Places Petition that is calling for Building and Planning Regulations to make these facilities COMPULSORY!

 
Disability can happen to anyone, at anytime, in any situation. One day you or a loved one could be needing these facilties. Please make a difference NOW, by signing the petitions above!

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Related Links

What is a Changing Places toilet?


Suprapubic Catheters

Scroll down on the above link to download Carrie’s experience + guide to understanding SPCs

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This blog post is linked-up with;
Navigating Baby

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