Author Topic: Feeling less alone in Ouchtoo  (Read 668 times)

Sunny Clouds

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Feeling less alone in Ouchtoo
« on: September 15, 2017, 05:14:38 PM »
Yesterday I had a horrible day visiting the hospital from hell accessibility-wise, where I felt totally and utterly humiliated by being just forgotten up a corner for hours on end.  It's a hospital I dread visiting for any reason  because of the 'traffic' flow round the hospital, with people coming and going in all directions and things like queues across in front of doorways and waiting areas in the middle of corridor junctions.  On previous visits, I've been knocked over a lot of times, and mainly in places where flows of people have to bypass crowds of waiting people.

People in local shops etc. saw I was upset and comforted me with such enormous kindness and concern, but when I got home, I sobbed and sobbed.

Then I came here.  Everyone here knows what it is to encounter obstacles.  I know that there are people here that encounter far more obstacles than I do, but I have never felt any sense of competitiveness about it, just sharing.

Its one of the few places I can say that I felt humiliated, that I wasn't afforded the dignity, equality and human rights I'm entitled to and not get scornful comments about snowflakes and political correctness.

If I need future hospital care, I shall go out of my way to avoid that hospital.  Maybe that sounds like an overreaction, but I've had problems there in department after department over the years.  I would even be willing to dip into my pension pot and go private rather than be humiliated like that again.

The irony is that most of the adjustments that would most help me (and a lot of others) are free or cheap and easy.

As I sit here, they could do a lot as regards crowds with a few simple markings.  They could say that yes, but the private PFI company would charge a fortune, but all they'd need to do would be to wave the Damocletian sword of legal action in relation to disability discrimination over the company's head, and if that doesn't work, they've got lots of uniformed volunteers keen to leap out at people coming in the building that could act as 'traffic control' in busy areas.  I bet they'd find volunteers if they asked for 'pedestrian crossing wardens' for their major junctions. 

But whilst I sit here, sadly thinking that realistically nothing will be done about this sort of thing, at least I'm not alone.  You've all got some sort of experience where you'll be thinking that it's not just the big expensive things, it's the things people didn't build into the design but wouldn't have cost extra or would only have cost a bit of paint and a few signs or an alternative for something that cost a negligible amount extra. 

 >bighugs<

auntieCtheM

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Re: Feeling less alone in Ouchtoo
« Reply #1 on: September 15, 2017, 07:55:20 PM »
So why not write them a nice letter and make your suggestions.

They used to have a friends and family form that you could fill out to say if you would recommend them.  They must have an equal opportunities person that you could write to.  After all it is not acceptable that you should be knocked over in a hospital, nor that you should be left behind in the appointments place.

(It has happened to me too, and I do not have a hearing problem.  But I wrote to them about it whilst I was waiting, being neglected, told to go away for it was lunch-time, left waiting in a closed department and I left the letter before leaving the hospital.  Things were a little different the next time I went there.)

Monic1511

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Re: Feeling less alone in Ouchtoo
« Reply #2 on: September 15, 2017, 08:23:02 PM »
Hi Sunny

I would write them a letter while I was angry and upset, then I read it again when I have calmed down a little before sending it - even via email to all the executives attached to the organisation.

I get very ranty occasionally  >doh< but it helps me as well as when I hit send it causes ripples months down the line - last time was when I had to wait 40 minutes for a bus after on drove past me, I contacted the chief exec of the company and the minister for transport, the driver who drove past was given a warning and the MP got an apology out of the chief exec.  The MP isn't keen on me but I don't really care, I felt better after ranting via an email.

go to the hospitals website, get the contact details for the managers etc and any high profile supporters, send them an email saying that you are a person of worth as well as they are and you wish that they would stop discriminating against you just because they are ignorant and untrained and obviously encourage such attitudes in their staff  >whistle<

one time I ranted so much at my bank for being discriminatory they put 20 into my account - wasn't looking for it but wont say no to some extra cash.


 >bighugs<
Monic

Sunny Clouds

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Re: Feeling less alone in Ouchtoo
« Reply #3 on: September 15, 2017, 08:54:45 PM »
I've previously written stuff and spoken to senior people but you end up having to repeat the same again and again because  however high you escalate it, it still gets passed back down to departmental level so there's no hospital-wide outcome.

I know I sound negative about it.  I'm afraid that after decades of fighting over this sort of thing, I'm exhausted.

It's like years ago being in a psychiatric hospital and their sounding shocked that I wanted access to a phone with either an amplifier or a T-setting.  Oh, and some hearing aid batteries would be nice, folks...

In relation to hospital after hospital, I've campaigned over stuff.  Even in relation to some matters giving evidence to a parliamentary enquiry.  I've been on quangoes and official consultation groups etc.  All, sad to say, a complete waste of time.  There's a culture of defensiveness that's now overlaid because of PFI and privatising services as well with layers of "It's not our fault, it's theirs."

I went a while back to a different hospital from the one that's annoyed me.  In fact, I've been to three different departments there, taking someone else to A&E once and them to an outpatient department twice, and me to a different outpatient department twice.  On every occasion, I found the  building quieter and the system for calling people better.  The only problem there was that one department made an assumption that everyone with visual impairments finds glossy black on bright yellow easy to read.

I do still have some issues I've raised with accessibility in another department of that hospital, but I'm not going to put in a complaint about this particular outpatient department, because quite frankly if the consultant in charge wasn't perturbed about what happened the last couple of times I went there, he won't be bothered about the latest, and if he's not bothered, the reality (as opposed to the theory) is that nothing will change.

« Last Edit: September 15, 2017, 09:38:06 PM by Sunny Clouds »

SunshineMeadows

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Re: Feeling less alone in Ouchtoo
« Reply #4 on: September 16, 2017, 08:19:06 AM »
 >hugs<  >chocolate< (Belgian)

The suggestions already made are good and at the same time I can see why you dont want to try getting them to change things when you have tried so many times before.

The GP surgery I go to used to have a amplified human voice calling people to appointments and they have changed it to a computer generated one. The fact it is harder for me to make out who is being called stresses me out and makes seeing the doctor more difficult for me. There is also a tv screen that shows the name of the patient being called but it is behind where I put myself in the unofficial wheelchair space - end of a row. I can see how all this is so much worse for someone who has more significant hearing problems than I do - my ears get stuffed up so the hearing loss is intermittant.

I am glad we can be here for you as you are for us  >hugs<

Sunny Clouds

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Re: Feeling less alone in Ouchtoo
« Reply #5 on: September 16, 2017, 10:58:22 AM »
My GP's receptionists are lovely - they know I look up if I hear a sound that even might be relevant (there's a room-buzzer/chime thing and they also call out names) and if they see me looking, they wave, call my name moving their lips clearly, nod in reply to my nod and point at the relevant consulting room door.  What a difference!

Also with the falling over and, before it was sorted, the night-blindness.  (I still have other visual impairments but not as disabling by a long chalk.)   Some of you have far worse issues than me with sight and/or mobility, and some have milder problems.  But here it doesn't seem to  matter.  Right now, that knowledge is one of the few things enabling me to go out of the house. 

NeuralgicNeurotic

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Re: Feeling less alone in Ouchtoo
« Reply #6 on: September 16, 2017, 11:54:40 AM »
 >bighugs<

ATurtle

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Re: Feeling less alone in Ouchtoo
« Reply #7 on: September 16, 2017, 06:13:01 PM »
i seem to remember a hospital I visited many years ago that had different coloured lines on the floor which matched with different coloured marks on "Signposts" in some places the lines were replaced by coloured arrows on the walls (especially at corners). This helped because at reception you were told follow the green, red, yellow, blue, black etc, line, if you were colourblind, the lines were helpfully adorned with contrasting symbols.

This helps for movement around the building, but as far as waiting areas, the nurses came out and called the patient's name.   Blank stares were met with a careful approach and eye contact as they repeated the name.

My GPs surgery has an LED sign that shows the patients name and a room to go to.  There are only a few seats in the waiting room where you can't see the sign without straining your neck to see the sign, but if nobody moves, the receptionist calls the name and hopefully the patient is still conscious.  (A few years ago, someone had fainted in their seat and no-one noticed! )

But, as stated above, until people let Management know that there is a problem, they sail on thinking they are doing a good job.  Yes, sometimes you will be fobbed off to a minor minion, but they are the people who have to do the fixing.  In addition, every person you write a letter to, or have a phone call with are educated as to your disability, this can only be a good thing.  It's letters to management asking them if they can have "No Noise" shopping or swimming times for autistic people that have created these services.
                                                                                                     
Tony.

"I choose not to place "DIS", in my ability." - Robert M. Hensel

Sunny Clouds

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Re: Feeling less alone in Ouchtoo
« Reply #8 on: September 16, 2017, 07:55:08 PM »
I liked the old lines on the floor thing.  Not perfect but at least an effort to help people to end up in the right place.

But I think that after many years of campaigning to improve the quality of local NHS services, I'm exhausted.  The same battles have to be fought over and over and over again.  I don't know why they bother with feedback forms or, for that matter, why some NHS trusts bother with PALs services at all, since they ignore them.

Still, even though I feel frustrated and stressed and upset, I'm not alone, and that makes all the difference in the world, because sometimes I feel horribly, horribly alone.

JLR2

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Re: Feeling less alone in Ouchtoo
« Reply #9 on: September 17, 2017, 11:43:38 AM »
Though not exactly hospital related I found a wee way to deal with the crowds on the promenade at the Tegel-hafenfest, a sort of huge event with music and various attractions in Tegel Berlin I was at in July, I used the small torch I have attached to my elbow crutch, I set it on flicker and in doing this many people who'd usually tend to bump into me, not out of malice or anything like that, became more aware of my being on the crutches and allowed me to make my way though without so many problems. I'm sure were someone to have a similar small torch attached to their wheelchair and switch it on when trying to get from one part of a hospital to another decent folk would take notice and make things for disabled patients that little bit easier.

Sunny Clouds

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Re: Feeling less alone in Ouchtoo
« Reply #10 on: September 17, 2017, 02:48:44 PM »
I have one on my shopping trolley plus some other markings that indicate (although they don't  have any writing to explicitly state it) that it's not just for shopping, but it's not a flashing one and I think it's a great idea to have a flashing one.

I also had one for a while on a wheely stick but again that wasn't a flashing one.

I wonder what I could wear that would have the same effect?  In all seriousness, for winter I'm now wondering whether it would be OTT to get one of those retro-reflective bands that go round the waist and over one shoulder that cyclists and some primary school children wear.  I could also put a flashing torch on it.

Mind you, I'm coming close to wanting to wear some sort of bright tabard that says on the front and back "Watch out! I fall over easily!"

If only there were a recognised walking stick equivalent of the symbol cane used by blind people.

Incidentally, as regards crowds in shopping areas, what I often do is to find a couple of people walking side by side, who appear to be the sort of people that behave as if attached to each other like conjoined twins, and to walk behind them.  Not so close as to make them feel uncomfortable, but not so far back as to make it easy for others to cut in between us.  It's often effective.

I wish I knew why  my hands don't work properly if I put my weight on a walking stick.  I'm not having much of a problem with writing now.  I know it's something to do with different sorts of signals between brain and hands, but why's it such different information as regards position of hand on a pen and paper, and hand on walking stick?  Grrrhh!

JLR2

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Re: Feeling less alone in Ouchtoo
« Reply #11 on: September 17, 2017, 03:42:16 PM »
Hi Sunny, a while back I had to get hold of some sticky backed material to cover up the Polizei marking on the back of the former German police jacket I'd bought, the bits and pieces I had left from doing this I attached to the lower end of my elbow crutches. The effect is useful in the early darkness of the winter months for things like crossing the road as car lights pick up on the reflectivity of the little bands I have now on the crutches and when there is no bright lights the bands simply look black.

The wee torch I attached to my elbow crutch was one I bought through Amazon during one of their sales and from experience I have learnt to tape up the end of the torch which houses the bulb as with the repeated impact of the crutch on the ground the bulb end, which screws on to allow bulb replacement, loosens to the point where it ends up detaching itself.

One thing I absolutely crack up with is folk who for some weird reason seem to think it fine to near enough walk in the back of my troosers when I'm going down the street. I mean if they want to join in the conversation I may be having with whoever I'm with OK but let them say so or pass us by. The number of times I have found myself coming to a complete halt and turning to the punter in my shadow to ask them if I'm walking too fast for them or if they'd like to offer their opinion on the discussion I've been having or as more often than not I've just said, ''heard enough?''  before directing them to get the heck out of my day. It is not like these folk I've experienced have problems passing me they just appear to think everything is fine but when you can pretty much tell them what they've just had for lunch or breakfast because of their closeness it does get to wind me up.

Just thinking back to my working days in the deli at Presto Anniesland, a Glasgow supermarket, I became so niggled with shoppers getting in my way when taking my rubbish trolley to the store's back door for emptying I took two 6inch boning knives, held one on either side of the trolley and called out as I made my way to the back door, ''Mind the knives please''  problem solved I never had a problem after that but unfortunately the store manager, George Duncan, felt it a bit hmmm dangerous and so asked that I stopped doing this. Ah the good auld days >biggrin<

ally

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Re: Feeling less alone in Ouchtoo
« Reply #12 on: September 17, 2017, 04:56:10 PM »
Since this post was a spin off from the dla to pip on welfare rights post.  Just thought I'd mention, I've been to a walk in centre this afternoon.   I now have shingles all over my back.  I've also decided that if I get a f to f I'm still going, even if I'm still contagious.  They can have my shingles with love.  I'm sure it was the bloody stress of it all that caused it in the first place X

Sunny Clouds

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Re: Feeling less alone in Ouchtoo
« Reply #13 on: September 17, 2017, 08:45:28 PM »
Gosh, that brings out the maliciousness in me, the thought of infesting an assessment centre with a virus!  But do stay away from other attendees, though, won't you, and just give it to the assessor. 

I got some timescales from somewhere on a DWP site and according to those I should have heard about my assessment by now but I haven't.

I'm still anxious about the UC thing but I'm not going to try to make sense of it until it happens and then I'll ask Monic about it.  (Shhh, don't anyone tell her I said that!)


Monic1511

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Re: Feeling less alone in Ouchtoo
« Reply #14 on: September 18, 2017, 07:15:18 AM »
 >lol<  >bighugs< Don't stress it ain't worth it.
As for shingles my colleagues have had it a few times, not nice but part of the job.
 >chocolate< >mug-tea<