Claiming benefits in UK with a colostomy bag?

I work full time - though every day is a struggle, and considering surgery coming up, and read somewhere that if one had a colostomy bag (for me it would be total removal of large intestine etc), that that would make me eligible for Disability living allowance (what level I'm unsure?), and possibly get the blue badge with that?

Is this correct - can anyone advise what kind of help I might be entitled to?

Of course, I'd check it all out once I got the surgery etc, but it's good to have an idea of how other people have found the system.

I assume all the equipment/bags etc can be prescribed free under the NHS in UK if we're constantly changing them?

Hi Yes, once you have your bag, all the supplies plus your other prescriptions will be free.

As for the benefits, that is a tough one. DLA is paid out not because you have such-and -such problem, but because you have care and/or mobility needs, it is a benefit that recognises those needs can require extra money/help.

I'm afraid I do not think a colostomy bag would mean that you qualify. If you can change everything yourself then you don't have a care need. The basic rule seems to be, if you can cook and clean yourself then no benefits.

DLA is being changed into PIP which will mean the current low rate care band (the most you would get, £20 odd a week) is being abolished anyway.

Disability benefits are now very hard to get in the UK and from the info you have given me I do not think you would get far.

There is a very good guide here if you want to have a read, and here.

As to a blue badge, there is nothing legal to say those with colostomy bags need one, but they are issued at your local authorities discretion. I'd get hold of the requirements from them, most have an option where a GP can state the reason you need one, so you could get support from your GP to get one.

I am sorry you are finding things a struggle, and if you go for the op I hope it improves life for you. I certainly have read some very positive things on here from members with "bags".

Thanks Stargirrl. I think I read somewhere that to have a "bag" classifies us as legally incontinent - hence the being awarded the benefits etc - I'm not sure.

I know in the past applications for blue badge and DLA when I was really sick, couldn't work, nor walk far nor really do much at all - I was still refused - it really is quite difficult.

I'll look into it further.

It is a grey area for sure- having no colon means incontinent but do the bags counteract that so to speak- if you're otherwise healthy and can manage changing them etc.

I think you've got a good chance for a Blue Badge but for DLA it's very doubtful, certainly not an automatic entitlement for either, very few things are these days!

You will be classified as disabled under the DDA. But that doesnt mean you will get anything. It may only mean that your employer needs to make accomodations for you. Yes, you qualify under the DDA because of incontinence. Although I can say that now that I have a bag...I'm NOT incontinent, whereas before I certainly was!

Your stoma nurses will fill out the paper work for you for the NHS to qualify for a 'medical excemtion' for you prescriptions. Thank goodness, because without it, our supplies cost ALOT.

ok thanks Terriernut

I was told we can only get an exemption cert if the stoma is permanent. If it can be reversed we should pay for prescriptions apparently.

But, most GI's will say it's permanent until they SAY so. If your stoma nurse doesnt help, something is wrong. Unless yours is specifically for say 3 months and you have a reversal date, you should have an excemption.

Good, I should think so Misty. My stoma nurse left a lot to be desired!

How is Michelle doing? Xx

Your IBD nurse should be able to help if the stoma nurse wasnt 'able or willing'. Last I heard Michelle was fine!

It is permanent now so all sorted thanks xx

I don't think there's a chance that mine would be reversed...will know more when I see them later in the month

I'm going through the same learning curve since my surgery and surprise ileostomy. At this point I believe it will be temporary so I have to pay for my prescriptions and bags etc, but before my operation I bought a prescription prepayment card for about £30 for unlimited prescriptions for 3months. By this time I should either be reversed or if not will request exemption so this might be a good idea (and I think you can apply for a refund if no longer required).

Other than that my GP has signed me off work for 2months, I do contract works so it basically means that I have no job to go back to, I have applied for Employment Support Allowance which is like Jobseekers for those that are not able to look for work dues to medical issue, but you can only receive this if not getting any sick from work etc. This come as Income based or contribution based so you may still be eligible even if you have saving.

My next thing to do is apply for DLA, not sure how this is going to work as I have to rely alot on family and friend for shopping, cleaning and I have a district nurse coming round to help with my dressing.

You may be able to get your water bill capped with the 'WaterSure' scheme.

It's worth checking your council's website to see which services they have available in your area, I have been checking out that they physio and local groups as I rather be completely mended and back to work than still claiming for months although if I have the reversal I will be off work for some more time...

Hope all goes well with your future operation

I had a temporary stoma for six months in 2010/1 and never paid for any of the supplies. One of the brilliant stoma nurses at St.Thomas' organised the initial contact with Fittleworths and all I had to do was ring them up when I was running low and a couple of days later a man would turn up with the goods. He even made it through the terrible snow in January 2011. At one point I needed a sort of wide, elasticated belt to keep the pouch against my skin and that was also supplied without payment.

As for getting benefits....I wouldn't hold out too much hope. Looking on the UK Crohn's Forum it really does seem to be an uphill struggle to get any form of benefit regardless of how needy you are.

Good luck with your surgery. Keep posting any news

yes i use fittleworth ever month and they ring me and ask what i need and never charge a thing

Hey guys,i recieve DLA and ESA.i had to fight like hell to get DLA,ESa was easier as i left my job and had no income,i applied 3 timed for DLA,got refused and appealed,i had some great help from my mother in laws friend who worked in the citizens advice,i was in front of a panel,which was made up of GP,lawyer and a member of the benifits mob,it was hard but i get the decision in my favour and the girl who came with me was over the room,as it was her 1st win for a crohns sufferer after 10 attempts,so there is HOPE.it may only be 20quid a week but its better than nothing,im due in next month for a stoma op so will look into what help i can get after that,then hopefully recover and back to work,im trying to find out if i can get help with another toilet in the house as my main loo is down stairs,its a nightmare during a flare,running down the stairs in the middle of the night,the good thing about living in scotland is no charge for prescriptions,
i hope you get the benifits your entitled to,

Craig

Key thing is to appeal if turned down. Decision makers at benefits agency are NOT medically trained and can only assess on the descripters set down in law.

Its difficult going through the process from reconsideration, looked at again and then appeal. However more than 50% of those that fight all the way get awarded DLA/ pip . Get help from a benefits advisor either from citizens advice or local council.


If you fight it all the way they have to back pay it to when you first applied for DLA/pip.

Hi just thought I'd let you know I have just been awarded highest rate DLA (Care) and ESA, they say for a year but I can't see any positive changes coming in the future.

I have no control of the out put and when active it leaks and soils obviously day and night I need asistance then hense the care component of DLA.

I guess some are lucky they are able to work and others get these kind of problems, it may be due to my parastomal hernia.

Hi,
I have just applied for the new PIP. It is for care needs/assistance that you may need but do not receive or want. If you contact the NACC UK they have a guide that they can send you to fill in the form. You need to explain how your life is day to day. It took me 3 weeks to fill in and I am now waiting for a appointment with ATOS for the assessment.
THERE SHOULD BE NO REASON WHY ANY OF US HERE WHO SUFFERS WITH IBD CANT CLAIM IT. WE JUST NEED TO ENSURE THAT THE ASSESSOR GETS WHAT WE GO THROUGH EVERYDAY. If you are refused 1st time round then you need to appeal and keep doing it until you get it.

disabilityrightsuk.org/how-we-can-help/benefits-information/law-pages/case-law-summaries/attendance-allowance-and#Incontinence[/url].

Take a look at this link for help on case law regarding inconitence and Crohn's in particular.

Other pages on this site are also helpful .:biggrin

Just thought I would clarify what I have learnt.

You will not get a Blue badge or a Car unless you get the mobility side of DLA , the high rate for that is about £55 a week. You have to prove you are not mobile.

The care side High is £79.15 a week but you can't get a blue badge or car, however, I read that this is the gateway to benefits and there are many other things you can claim such as a free cinema pass (which I now have) and lots more, all which are none taxable or means tested, i/e ESA don't take this income into consideration, nor will the council for Rent and council tax claims, Hope this is of help to anyone.

Best of luck with it, and don't give up, you deserve it.