Changing Places Toilets (UK)

@billliveshere Thanks! Yeah been wanting to see him live for years. Also booked a ticket for Nick Mason's band who play the early Pink Floyd stuff - they're playing in Oxford on my birthday next year. Actually found that I can play guitar if I just strum with my right hand and don't use a pick - struggle to hold things and manipulate my fingers properly. I think Long Covid has affected my left side as I'm not great at the lead stuff anymore. Still, I'll take just playing chords rather than not being able to do anything. Putting my right arm in a sling to rest it when it's not in use has also lessened the discomfort.

@snow Don't get me started on the Covid denyers! Sure, it's true it's just like the flu for some folks but it's left me profoundly physically disabled, I can't even live independently or work and given there's still not enough known about Long Covid there's no proper treatment. I turned 30 earlier in the year and just when my peers are fully entering adult life, I feel like a kid again.

@laalaauk Which station out of curiosity? Avoiding the tube like the plague at the moment due to well, the plague! Once numbers are down I'll use it again.

Interestingly when I booked tickets for events when I'll be in Oxford the booking page stated proof of vaccination or negative test will be required. Haven't got a problem with that. Whilst the vaccine has caused me issues, I'd be a lot worse if I caught Covid again unvaccinated.
 
Hi @Sci_Fi_Fan, I was thinking that doing what you can with your guitar in any way that you can, you're giving yourself physical/occupational therapy! And that's how someone adapts to their "new normal." It may not be the same as it was before but with repeated practice and a therapy regimen that you do on your own you can probably see progress being made. And that can come sooner or later. But just keep at it at a regular time each day, if possible. I always say just do a little more each day than you did the day before!!!
I think that would also be true with practicing just holding things and manipulating your hands and fingers.
With physical therapy it's gross motor skills, that is using major muscles like arms and legs and occupational therapy is using fine motor skills such as playing a guitar or using a knife and fork or a toothbrush. But all of those need to be practiced daily so those muscles won't atrophy. It may not be perfect now, but keep on keeping on and you'll get there!!!
 
And @AlasSouth, Just like we do have the right to yell "Fire!!" in a crowded theater until it's made known there really is no fire!!!
And @laalaauk, that sounds most interesting! A well equipped handicapped restroom in the London underground. And that's complete with hoist, adult changing table, grab bars and the works!! That's really amazing and I wonder if the transit systems in the U.S. will ever get those in our lifetimes???? Can anyone imagine such a well equipped and clean facility in the New York or Philadelphia underground transit system??? Uh-uh!!! Too much money to spend say the transit authorities who are in the pockets our friendly, ever so mindful of peoples' needs politicians!!!!!
 
@billliveshere Physio's weird for me really in that nothing really works in the regular way. No exercises have improved the muscle weakness like they would if it were a regular injury/problem. It's basically presenting like a neurological problem but all tests have come back normal and my osteopath has said that if it were a regular neuro issue then they'd be expecting to see some muscle wastage by now. What I find great about my osteopath is that, unlike a lot of doctors I've seen, he doesn't think he knows the answers and acknowledges that Long Covid is new ground and it's all just trial and error. Whatever he's doing is lessening the discomfort and helping with the IBS so it feels more like a management thing than a fixing thing at the moment.

It appears to be a thing with a lot of Long Covid people. I'm in a Long Covid group on social media and lots of others say that they have massive issues but no tests detect anything. As it comes up to the one year anniversary of when my physical disability started, I'm preparing for the worst and hoping for the best - assuming I'll be stuck like this to a greater or lesser extend and getting back to doing stuff as I don't want to put my life on hold due to physical disability. Still always hopeful that there will be a breakthrough. I'm only 30, hopefully I'll be around when there is one!

@laalaauk No worries! Just pleased that there are some facilities at tube stations. It's often been an issue for me travelling by tube, especially before I used products to manage my issues.
 
@DPCARE Great articles! Even though I'm an adult they particularly resonated with me. The point about the amount of nappies you get on the NHS is an interesting one. I haven't even been referred to continence services and even though I've spoken to numerous medical professionals about my incontinence they've never asked how I'm dealing with it.

I'm fortunate in that I'm able to afford my adult nappies with assistance from my father but it is a significant cost. It also seems that the products that they give out aren't the best quality. I think (maybe it was on here) someone said the NHS gives you four cloth backed Tena Maxi per day. I also think the amount is also quite low, considering the capacity. I get through four a day and one at night on average. Even when I was just dealing with the after dribble I'd need to change the Maxi nappies after a few hours because the wetness indicator would be set off big time so I switched to the Ultima. When it comes to big accidents I find that even the plastic backed Ultima can leak and need to be changed pretty much immediately because there isn't the capacity. Personally, the cheapest product I've found that handles my needs is the Drylife Slip XPlus. I think a better solution re NHS supplies would be to give people a set amount towards the cost of supplies and then they could always use their own money to get better supplies if they wanted, but they'd still be subsidised.

My current product regime is to use the Drylife Slips around the house as they're cheaper than BetterDry and the Tykables Camelots when I'm out and about. They're the most absorbent product on the market which means whilst they're also really bulky they rarely leak and they can wick a whole void away meaning it isn't the world if you can't find a suitable toilet immediately.

The point about avoiding drinking because of the lack of a suitable toilet hits home as well which is why the changing places toilet the other day was such a godsend - I knew I could drink whenever I needed to because I could change when the inevitable happened. They also lessen the amount of stuff you need to bring as well as they have a bench. My relatively large rucksack was pretty full with my standard supplies - 3 spare nappies, powder, wipes, nappy sacks, gym shorts in case I leaked. Having to bring a mat would have been too much - especially as I already have issues carrying stuff. I also think one problem is that people assume if you're disabled you have a carer to carry all your stuff. This really isn't the case for everyone and I want to be as independent as I can.

I think the bottom line is that there's a real lack of disability access. I've been musing on getting a wheelchair as in theory it would help me get around quicker and would certainly cause me a lot less discomfort. However, then there's the issue of wheelchair access so I plough on using the crutch as if a lift doesn't work I can make it up the stairs.
 
Thought I'd resurrect this thread I made in light of some big issues I've had with disabled toilets when I've been out and about the last couple of days. My Dad lives ages away but came down for a couple of nights so I was able to get out the house - hooray!

My mobility issues have really hit rock bottom and I've been in areas which don't have Changing Places toilets and it really hit home how inaccessible many 'accessible' toilets are. Even before I was in a wheelchair when I'd wear protection for milder issues and could change standing up it was tough finding a disabled toilet which a) had enough room to change in b) had somewhere to put supplies and c) had a bin to accommodate used products. Now I'm in a wheelchair it's a nightmare. Often if I can get the wheelchair in, there's not enough room for me to lie on a mat on the floor and even then having to lie on the floor and get back up takes a huge physical toll on me (and isn't particularly pleasant to the say the least).

I was in a disabled toilet earlier today at a train station and as I had to stand up to get my mat and supplies out, I had to hold onto my wheelchair for support and the pain was unbearable and my muscles started to spasm. I genuinely thought at one moment I'd have to call for my Dad to come in and change me it was so bad (fortunately I managed to and was spared that embarrassment). He did eventually have to come in to put my shoes on for me and sort out my clothes (which was insanely embarrassing) and that was after he'd gotten into an argument with an attendant outside who was moaning I was taking too long in the toilet! There was also no large bin for products so just had to leave them bagged up on the sanitary product bin. I'm glad that my IBS also didn't flare up as I have no idea how I'd have dealt with a bowel accident in a regular disabled toilet.

What's frustrating is that all that regular disabled toilets need would need to be properly accessible for wheelchair users with incontinence issues is a bit more room to put a changing bench. That way wheelchair uses like myself could just directly transfer from the chair to the bench and change easily. Considering how many people with disabilities have incontinence issues it annoys me that regular disabled toilets don't take that into account. The fact that there is no bin big enough for adult nappies in most is also a massive oversight. I can see why the Changing Places campaign uses such strong language!

Sorry for the rant but I think that considering how many disabilities have incontinence as a part of them there needs to be more awareness about adequate facilities. I'm also getting pretty anxious about toilet facilities at uni after my issues today. I may just swallow my pride and ask the disability team if one can be adapted in the main building (i.e. a bench put in). I'm sure I'm not the only one who would benefit. To be honest, I'd have been glad of Changing Places toilets before my mobility issues as changing standing up has always been awkward.
 
Hi @Sci_Fi_Fan, please don't apologize for the rant; I think it is well warranted!!! If I were in your place I would feel exactly the same way!! And it would be embarrassing as hell to have to have your dad come in to help you get sorted out after using a public restroom. But thank God you had him available since he's family. I really sympathize with you and if there's a silver lining to this cloud it's your voice. You can speak out, just as you're doing here and maybe you can join the Changing Places team or become a member. Your voice will help make others aware of your needs and demand that something be done.
Of course Changing Places can't go to all places at once, and that's a no-brainer! But the effort is something that is done one-by-one and more and more places are brought up to Changing Places standards.
As for the facilities at the university where you plan to go, is there a large population of disabled students?? I would think so, because more and more disabled people, whether just out of high school or adults who for one reason or another want to pursue a degree, constitutes a considerable portion of the university population.
I wonder if there is a club (for lack of a better word) for disabled students that you can join once you start there. And since there is a disability team there, don't be shy about point-blank telling them what you need. I'm sure there are plenty of others who need the same thing.
I'm not sure what the cost of adapting restrooms can be, but putting in decent-sized bins for disposal of used products would be a good start. And a competent maintenance team should be able to build a sturdy bench that someone in a wheelchair can swing down and then use and swing it back up when done. I don't think the costs need to be prohibitive.
But if you don't speak up and expressly say what you need then no one can ever know!!
I think the more this gets out in the mainstream and the more people become aware of the needs of the disabled population then the more likely definitive action will take place.
You have everyone's best wishes and support here!
 
Hi, Sci_Fi_Fan:
Wow, did you give me something to think about. Used to work part time for a man who did "handicap" renovations, from ramps outside to bathrooms or kitchens. Your issues never came up when I worked for him.
Here's the issue I'd like to add. My wife and are officially old farts now. Our house is small. (on purpose - we can't pay for hot & cold running maids....) I'll ask that Contractor. He was mostly paid by an Alaska government assistance program. Weather-proofing and insulation, too. I just loked at the bathroom, again, with your issues in mind.
Our bathroom could not be renovated for wheel-chair access, even, much less your more detailed issues. We'd have to expand it, and I have no idea how we can find the room or the money. We may have to get rid of the current tub-shower to get a shower that can have a proper array of safety rails and a fold-down seat. You made me realize a bathroom addressing your issues needs safety rails in other places besides the shower - like the walls where you might need assisstance to get up and down for changing purposes.
Yikes!
Maybe talking to or preparing a handout to a Representative? Better yet, how about to the Code authorities - national and international. You raised issues not addressed in the present building codes. Hell, the codes barely mention building more stalls for women in a commercial establishment. They may or may not address changing tables for infants, but we see more & more of those.
Thanks.
 
The United States has done a lot in the last few years to bring these types of bathrooms here. The hospital I go to has a few in the building, ER/ED and other areas. Also the amusement park I go to here in Pennsylvania has one at their medic station as well as put in 10+ family/ single access bathrooms that are slowly being upgraded.

Also, a lot of rest areas and truck stops have them now.

Now the big thing is that there is a huge difference between a family bathroom and a changing places bathroom.

I have used the one at my ER/ED to clean up after being in the ER/Ed.

They are very nice bathrooms. There are a few apps mentioned here on NAFC that you can use to find bathrooms.
 
Thanks for the replies guys! Was feeling pretty miserable after being out yesterday - some days I think I’m coping with my disabilities, other times it feels like I’m back to square one emotionally. I guess it all boils down to what facilities are like in the area I’m in on any given day and how accessible the terrain and buildings are. Even in Central London that can vary greatly from area to area.

To be honest, I used to hate changing in that train station before Long Covid came along so not surprised I had a rough time yesterday now my mobility is non-existent and I’m in a wheelchair. The main issue is that the train station in Central London which has better facilities isn’t as well staffed and so getting on trains can be a pain as I can’t rely on there being someone to get the ramp so swings and roundabouts really.

The upside is I may have sorted travel out re university by getting a taxi there and back. I should be getting funding through. Was actually helpful I spoke to the guy and tried to book independently for next week due to a delay in processing. Turns out that the assessment centre were a bit cheeky saying it was a viable option as he gave them a quote for the distance but asked them for wheelchair measurements to make sure he could accommodate me. They never told me about it and on the completed form it looks like it was a truly viable option that was fully explored. It’s a pretty big deal as there are next to no wheelchair accessible taxis in the area so to speak and so if this isn’t viable there’s no way of me getting there door to door. Kind of annoyed about it to be honest.

The issue is very much where I live due to how dangerous it is navigating around. I have done it there and back but it felt stupidly dangerous. The only other option would be to leave the wheelchair at university, get in a taxi on crutches and get someone to wheel it to me the other end. I could take the battery back to charge and bring it with me. What’s really frustrating is that there are private halls of residences available for less rent than what Student Finance are funding for my taxis but Disabled Students’ Allowance doesn’t cover accommodation costs. I suppose if there is physically no way for me to get there in a wheelchair in a taxi due to lack of availability I could argue that it’s the only option. Issue is that I can’t live independently. It’s all a big headache and pretty much just down to where I live. There’s a steep hill up to the house which is a blind turn and you have to get the angle just right to go up as otherwise you’re stuck. Due to the steepness if you reverse you’re going to probably fall back and at the end there’s a busy main road. Once I’m at the station it’s not too difficult as people are so helpful. I guess that’s the issue with sudden and unexpected disability - you never think you’re going to need a wheelchair.
 
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