The state benefits system mega-thread.

[weenie]

Originally Posted by nomadking

Not sure I see how incontinence can be helped with mobility money. Even with access to a car it will take time to get anywhere. An overarching criteria for high rate mobility is that you have to be able to "benefit from enhanced locomotion"

Not being funny here but if I were in a situation where I had little/no bowel control when the I needed to go, I would rather have an accident in my own
vehicle than public transport sorry if this has upset any one with bowel problems...but I think bowel incontinence should get high rate mobility...

[peanut]

Originally Posted by weenie

Not being funny here but if I were in a situation where I had little/no bowel control when the I needed to go, I would rather have an accident in my own
vehicle than public transport sorry if this has upset any one with bowel problems...but I think bowel incontinence should get high rate mobility...

You are right, you can't call a taxi nor get on a bus when you've had an accident. And when I say accident I'm not saying a small containable one either.

[nomadking]

Originally Posted by peanut

If you need to go out for any reason you need at least 3-4 days notice. 1 to get your head around it and plan, the others to starve yourself to make sure you're able to get out with as less stress as possible. Though starving yourself when you're under 9st and no hope of putting on weight isn't the best thing to do.

Still don't see how mobility money would help in any way. If I have somewhere I have to be at a particular time, I don't eat for 24 hrs beforehand. That is usually enough to cope. If you are totally housebound for most of the time then you don't qualify for high rate mobility because you fail the "benefit from enhanced locomotion" rule.

[weenie]

Originally Posted by peanut

You are right, you can't call a taxi nor get on a bus when you've had an accident. And when I say accident I'm not saying a small containable one either.

Exactly, I cannot see a taxi or bus driver being too pleased, so therefore your very own private transport is very much needed here.

---------- Post added at 17:08 ---------- Previous post was at 17:03 ----------

Originally Posted by nomadking

Still don't see how mobility money would help in any way. If I have somewhere I have to be at a particular time, I don't eat for 24 hrs beforehand. That is usually enough to cope. If you are totally housebound for most of the time then you don't qualify for high rate mobility because you fail the "benefit from enhanced locomotion" rule.

I would have had your thoughts if I had not experienced just what this illness can do to someone, honestly they do need their own transport and sadly until you experience or witness first hand at just how ruthless Crohn's can be and how suddenly they need to go, you cannot even imagine the panic they feel.My friends life has been ruined by this illness honestly.

[peanut]

Originally Posted by nomadking

Still don't see how mobility money would help in any way. If I have somewhere I have to be at a particular time, I don't eat for 24 hrs beforehand. That is usually enough to cope. If you are totally housebound for most of the time then you don't qualify for high rate mobility because you fail the "benefit from enhanced locomotion" rule.

More often than not when I have hospital appointments (very often) getting 2 buses (1 hour) is way too long and often won't stand a chance to get there, so I do have to rely on taxis to get me there. A taxi could get me there in 20 mins.

Also the same when I do manage to get out, if I need to get home quick (again often), then buses are not always best option.

Having panic attacks when you're out is all too common, it's get home quick as possible again, walking or busing is out of the question. It's the same when you can't move for pain, the list can go on.

For hospital or medical related appointments contact your local ambulance service and transport is one less concern Arriva run it where I live and having used it I can't say enough good about them.

[weenie]

Originally Posted by RizzyKing

For hospital or medical related appointments contact your local ambulance service and transport is one less concern Africa run it where I live and having used it I can't say enough good about them.

That is all very good but if you suffered from severe bowel incontinence would you be prepared to wait around for a lift, I for one would not like this and panic attacks are very common for Crohn's patients, for they are very fearful for losing control of their bowels as they have very little control on this matter and every journey they make is like a military exercise, I can only imagine the fear my friend suffer's, it is bad enough for someone when this happens among close friends and family member's, I shudder to think what they must feel if and when this happen's in public or among strangers...I know my friend refuses to go anywhere now and if she visits me it is on the condition she uses my on suite as she is deeply embarrassed for obvious reasons...she will also not visit any longer if my hubby or son's are in, which TBH is really sad, as they would not think any negative thoughts of them as they know she is ill...

I don't know how it works elsewhere but i give them my appointment time and they arrive pick me up stay till my business is finished and drive me home again. My mother uses it as well she has been a crohns suffererr for fifteen years now and she also praises the service.

[weenie]

Originally Posted by RizzyKing

I don't know how it works elsewhere but i give them my appointment time and they arrive pick me up stay till my business is finished and drive me home again. My mother uses it as well she has been a crohns suffererr for fifteen years now and she also praises the service.

I know my friend would not use this service as there could be for example 6 people in the pick up service and she would need to wait for the last person's appointment before being driven home to the Glasgow area so not ideal for someone who suffers from severe crohn's tbh, on my free day's I try to take her, so her hubby is not using up his holidays, if you do not mind me asking how does your Mum cope now as my friend feels she has let down her family as she cannot work any more and has to rely on benefits which is half her wage so she is under a lot of pressure IMO she is blaming herself for something beyond her control but this is all new to her as she has only had this horrid illness for maybe about 6 years but was only confirmed 3 years ago as her doctor had her down with IBS and nervous disability before sending her for tests..

To be honest living with crohns is the same as living with any debilitating illness first understand it what makes it worse/better and adapt life around it usually that's the hardest part. My mother had to give up her job as well but she was only six months from retirement so that wasn't a major problem she restricts her diet no pork being the main thing but given how much she loved bacon sarnies that hit her a bit. In terms of going out and about she never goes anywhere without knowing where facilities are and has a little kit in her bag no idea what's in it and not something I've asked.

[weenie]

Originally Posted by RizzyKing

little kit in her bag no idea what's in it and not something I've asked.

My friend is the same carries a little hold all, I know she has a radar key and can't wait card, and I too have never asked her what is in the bag but I can imagine...she is only 40s so it is quite hard for her as she has a young family and money is quite tight for her now as she has always worked as she never imagined being on benefits and like many she feels people judge her for being on them, which is their problem IMO and not her's but try telling her that...that is why I get so mad at people bringing down people on benefits as no one know's what is round the corner for them...

---------- Post added at 22:18 ---------- Previous post was at 21:48 ----------

Originally Posted by Pierre

Is everyone on this site on ESA except me?

NO. I am not on ESA and hope never to be...there seems to be a lot of stress being on it, IMO it is terrible to make someone feel so stressed out at receiving this benefit... the government should hang their head in shame at what they are doing to the sick in the UK...

[Pierre]

Originally Posted by peanut

You are right, you can't call a taxi nor get on a bus when you've had an accident. And when I say accident I'm not saying a small containable one either.

It's a difficult one, and this highlights the issues out there.

In my opinion, on this case, I think I would agree that a mobility benefit would be in order.

Subject to certain criteria. But generally I wouldn't object in this example

[weenie]

Originally Posted by Pierre

It's a difficult one, and this highlights the issues out there.

In my opinion, on this case, I think I would agree that a mobility benefit would be in order.

Subject to certain criteria. But generally I wouldn't object in this example

Sadly Pierre it seems many would...I always try and imagine living in that person's shoes before I decide, sadly not every one has our views I just think when I have a tummy upset, I would not want to use public transport or even a taxi now can you imagine living with that x 10, that is what peanut goes through everyday because of Crohn's...

[TheDaddy]

Originally Posted by peanut

More often than not when I have hospital appointments (very often) getting 2 buses (1 hour) is way too long and often won't stand a chance to get there, so I do have to rely on taxis to get me there. A taxi could get me there in 20 mins.

Also the same when I do manage to get out, if I need to get home quick (again often), then buses are not always best option.

Having panic attacks when you're out is all too common, it's get home quick as possible again, walking or busing is out of the question. It's the same when you can't move for pain, the list can go on.

Iirc there is a mobility scheme involving cabs for those that can't drive cars anymore, think you can get a cab anywhere in the borough for a quid for instance. Jacket spuds including the skin helps alleviate crohns a little

[peanut]

Originally Posted by TheDaddy

Iirc there is a mobility scheme involving cabs for those that can't drive cars anymore, think you can get a cab anywhere in the borough for a quid for instance. Jacket spuds including the skin helps alleviate crohns a little

That sounds like a good idea but from what I can see it's for the London area only. I will look into seeing if there's hospital transport but from what I can find it is different for all areas.

There is a lot of truth about relying on transport as booking it in advanced doesn't mean I would be able to make use of it. If I can get the bus I will, but most decisions are made minutes before I need to leave. Sometimes I have the intentions of getting a bus, then at the last minute plans change, then even getting a taxi can be out of the question. So any kind of prior planning can make matters worse.

As for potato skins, they used to be safe. But after 25 years a lot of changed, I used to have periods of remission which was helped with a strict diet of safe foods but now as things have changed it's a struggle to find anything that I can class as safe as it's now just mainly food in general.

Obviously what is safe for some could be hell for some one else. I can't eat eggs, onion, soya (and soya protein), most oils, spices, yeast extract, salad leaves, nuts and basically anything that can be hard to digest, but I don't think I'll ever find out what is safe now or not. If I do eat any of those I'd know about it within half and hour and probably for a few days afterwards too.

But the point is there are illnesses like Crohn's that doesn't get the proper attention or awareness it deserves (who wants to listen to my toilet / bowel habits etc, hence it is classed as the 'unsociable disease'), not enough people are aware (including GPs) and because no single person is the same or have the same symptoms you hear of conflicting opinions on it. When I was first diagnosed I did have bouts of remissions and certain drugs did work (for a while). I held down a good job despite having a few problems. I know of other sufferers that can and do go to work, some go months or a lot more without any signs / symptoms and can be totally controlled by medication and basically live near normal lives. But for some it is life and soul destroying and when it is it is still difficult convince people that it is serious enough to claim benefits because on the surface I could look totally normal.