incontinence as a disability?

[loobylouloos]

Donning my hard hat here.
Since the birth of my son 18months ago I have been incontinent of urine and mildly of faeces – urge incontinence rather than the stress incontinence which is common after child birth. When I need to go I have a couple of minutes at best to find a loo. I have wet myself and soiled myself in public (luckily very close to home when I soiled myself).

It significantly affects my life - I will not go anywhere where I do not know there to be many public toilets, I can’t lift anything heavier than my son, and he is starting to get too heavy, I have not yet gone anywhere unfamiliar due to not knowing about toilets and I can’t do things I used to do such as run, trampoline, rock climb or lift weights.
My job is not office based – I go out to see clients, either somewhere public or their own homes, there is not always a toilet available. I have to go to the loo before leaving for the appointment and know every supermarket/ mcdonalds etc local to where I am going. I have spare clothes and wet wipes in my car.

I have had numerous gynae appointments and 8 months of women’s health physio. It has improved but is unlikely to improve further; surgery is not an option (as it will not fix the issue).

I’ve been back at work 4 months now and it is starting to affect my ability to do my job, I can’t do long appointments or be away from the office for longer periods, I have to leave meetings to use the loo – sometimes every half hour or more frequently.

I haven’t told anyone at work as I was hoping it would improve further but it looks like I’m going to have to. Would this come under disability legislation? I could have reasonable adjustments made (e.g. my boss knowing why I leave meetings frequently, making sure I can come back to the office between appointments etc).

Would I also be able to use disabled toilets? So far I haven’t but I also don’t go anywhere where there is likely to be a queue, as I couldn’t wait in a queue. Many of the disabled toilets have a key – do you have to have a GP letter or such to get a key?
I feel like I’m being disingenuous about it possibly being a disability, but it is really really affecting my life and I don’t know what to do.

I don't know about work but yes you can use the disabled loos - ask your doctor about the key (i think they are called Radar keys?)

My Brother has severe ulcerative Cloitus (he has had most of his bowel removed) and he has the key, like you he needs to use the toilet frequently and can not wait

You can buy a radar key at lloyds pharmacy, £5.99 I think

Yes, this is a disability. You could also consider applying for PIP to help your with the obvious cost burden of the associated washing, replacement of clothing etc. You can be in work and have this financial support.

You can buy the keys on Amazon

It sounds like a disability, do you have an ops service at work?

Ohs service :(

Of course it is a disability.

I have crohn's disease which is defined as a disease not a disability. Usually I am not incontinent but during an active phase it can get that bad. I use disabled toilets when I need to (to avoid a queue if it's urgent, or to clean up ), including at work . A friend has it worse (colostomy bag) and uses them all the time.

Apply for pip - managing toilet needs is one of the descriptors.

I'd say that under the equality act it would be classed as a disability and as such your employers should be able to make reasonable adjustments for you.

Guidance here about whether something can be classed as a disability.

You can work and claim PIP (imo you should!)

You can buy radar keys from the internet. I think I just had to click a button to say I wasn't up to any funny business.

Disabled toilets are just more easily accessible for those with disabilities. While I wouldn't suggest people use them as a matter of course, if you have a need and the alternative is having an accident, then you should use them.

I have a radar key for my ds who has autism. He doesn't like the hand dryers and often waits until he is absoluting desperate. At which point we have to run for a toilet. I will, if I can, take him into the main toilets or go for a family toilet etc but if there was a queue, we'd be in the disabled loo.

I would class that as a disability without a doubt, it must be so worrying for you when you are out and about. Quite a few of my close relations in the generation up from me seem to suffer from similar (they call it the 30 sec warning and all have had various accidents out and about) and I often worry if I will end up the same the older i get.

Thanks, I was honestly expecting to be told not to be so silly, it's just a bit of wee!

No you're not being silly
I doubt you would qualify for PIP so dont get your hopes up. the people who suggested it are thinking its like the old Disability Living Allowance which was for help with the extra costs of being disabled. that has been scrapped. PIP is nothing like it.

You can download the rules for PIP here;
www.disabilityrightsuk.org/

This is a really great wee gadget which is available on prescription renew-medical.uk. Very comfortable and hugely effective.

Speak to your GP and start off the process of getting recognition for the impact it's having on your life. I'm sorry you're in this situation, but, I'm pleased you're not just putting up with it.

A urogynaecologist works slightly differently from a gynaecologist. Have you had tests done to see how your bladder is working, or trialled medication? A colorectal nurse will be able to help manage your bowel with diet and medication so it's less leaky. And, that gadget is really, really good. THey'll send you a sample pack to trial.

Your not being silly at all.

Well worth talking with a manager at work and allowing them to make reasonable adjustments - confidentiality means they can't tell anyone else without you knowing and agreeing.

If the disabled toilet is the closest then too right you should use that.

You would probably score a few points for incontinence on the PIP descriptors but unless you have other problems you are unlikely to score enough to qualify. If it can be managed by pads or you are only occasionally incontinent then it is unlikely you will qualify. It might be worth taking a look at the PIP descriptors though.

Agree with above posters, it absolutely qualifies you to use disabled toilets. Unsure re:PIP.
You may already have heard of them, but if not www.bladderandbowelfoundation.org may well have some useful info for you.

Radar keys can be bought online.

Unfortunately you are very unlikely to qualify for PIP

for you.

If you work for an employer with occupational health, I'd just go to HR and say you have a health condition that's affecting your work and can you be assessed.

It's all very grey really. Some employers are happy to make minor adjustments (regardless of whether you're deemed to have a disability) and others won't (even if you are deemed to have a disability). A lot depends on the nature of the job and the employer.

If you don't have HR/Occ Heath I'd have a quiet word with your manager/boss.

So what I'm saying is it doesn't make a lot of difference if you're deemed to be disabled or not IME (I used to work in OH). But by all means ask for help/adjustments - it's fairly common for people to have adjustments in place for these reasons. The whole department doesn't need to know why - the employer should respect your confidentiality.

Not in the least bit silly...........

Can't advise on the PIP or legal side of things but am a bit concerned that after 8 months of no improvements they haven't referred to a Continence Advisor at the least.

Have they offered anorectal manometry; anal ultrasound or MRI?

If it's affecting your life have you thought about incontinence pants? Or pads? Apparently the pads are a bit more discrete! Ofc it's a disability and it sounds awful for you, I would apply for pip too the worst they can do is turn you down.

I do welfare advice. Unfortunately you wouldn't qualify for PIP. PIP is points based and needing "aids" (wet wipes and so forth) to manage incontinence is only 2 points-you need 8 points for an award. You might qualify for ESA (incapacity) ("at least once a month experiences incontinence bad enough to require changing clothes") but it sounds like you want to continue working. It is definitely a disability though and you should qualify for reasonable adjustments.

You poor thing :( I agree with everyone else, talk to work, get a radar key, do whatever makes your life easier.
incontinencechoice.co.uk sell a range of products that might be helpful. Also Hi-line produce a range of swimwear for double incontinence.

Yes, it definitely does come under disability legislation. I have a maximum award of Disability Living Allowance (both components). I’m not required to switch to PIP. I receive the care component because of incontinence. I have to justify needing a carer to help me with toiletting one night a week to justify the maximum award. Simply(!) needing to get out of bed once or twice at night to change an incontinence pad meets this condition. I get the mobility award for the spinal injuries which caused the incontinence and loss of mobility in the first place.

Anyone can use disabled toilets, think of them as ‘accessible’ toilets, which is what they’re meant to be and more people than we disabled make use of them, think mums ferrying babies around. It’s where you usually find baby changing facilities, and they’re most often unisex. Anyone can buy RADAR keys, they’re often available from incontinence goods suppliers but watch out for fakes. They’re best bought from the source Radar Keys.

If you’re going to claim PIP, and you should, I strongly recommend subscribing to Benefits and Work so you can download their really excellent guides to making claims. I did, and got my DLA award in 2012 first time, complete with home ATOS medical, without any appeal necessary. Those applications are very hard work and reading these guides will help you think in depth about how you’re affected by this. You need to put all the detail you have in the claim form. It’s worth it in the end.

There are a lot of incontinence products and suppliers out there, some suppliers provide samples which is a help. You can PM me if I can be of any help.

You can manage this! You don't have to give up work and hide at home.It takes getting to know your condition and how you need to manage it, and confidence, and getting the best products for you. This is what you pay your taxes for, please do claim even though it's such hard work.

Can I just get on a little soapbox, please? That blue and white stick wheelchair sign doesn’t mean ‘disabled only’. Its use is governed by ISO 7001 which covers international road signs, which it why it’s the colour it is. What it says is that the area designated by the sign, is, with two exceptions, largely but possibly not wholly, accessible to someone in a wheelchair. The two exceptions are lifts and toilets. In those two cases the sign means that the designated area is entirely accessible to someone in a wheelchair, meaning all the doors, equipment, knobs, buttons, flushes, alarms, controls, lights, everything. The sign simply conveys that information and nothing else. It doesn’t say anything about who can or cannot use it. I’ve had people in wheelchairs berate me for using an accessible lift or toilet , and they’re wrong. I had someone at the passenger lift on platform 1 at Paddington Station take so long haranguing me (inside) from outside that I hit the ‘down’ button, the doors closed and I waved at him sitting there with his mouth open. There was room for both of us in the lift.

I have a maximum award of Disability Living Allowance (both components). I’m not required to switch to PIP. I receive the care component because of incontinence

The descriptors used for DLA are different for PIP. It is unlikely unfortunately that OP from what they have said would qualify.

I agree that there are some good incontinence products out there. It does take a bit of time, as I have found out, to find out what works best for you.