IBS - a disability? NHS pay for my special drinks?

GustyGardenGalaxy

Is Irritable Bowel Syndrome classed as a disability?

I ask as I have suffered with this condition for many years and, as I get older, I am only able to eat smaller and smaller amounts (I can now manage about 3 or 4 buscuits a day). I've been checked out by more doctors, gut consultants, etc than I've had hot dinners but to no avail - I simply have IBS which can be managed to some degree in some people, but none of the meds available seem to help me. Think I've tried them all!

Anyhow, to the point - because I am able to eat so very little my main diet these days consists of special nutient drinks, in this case Ensure Plus, each bottle of which is basically the equivalent of a nutritious meal.

The problem is that these are expensive (nearly £3 per bottle, I need to take two or three a day to keep me going). This costs me about £250 per month.

When I last approached them on paying for this (about two years ago), the NHS (via my doctor) point blank refused to pay.

Now I'm self employed and my income is taking a big hit I'm once again wondering if I could try and get my nutritious drinks paid for - I don't take them 'for fun' - they really are vital to me.

What can I do?

Thanks

shop-to-drop

Are these drinks in place of food then? If so then surely it isn't that expensive and should come out of your grocery budget. I doubt very much you can get help with these and really feel it wouldn't be right if you did. I hope your condition improves do you have regular visits to the doctor? There may have new medication out now that will help.

GustyGardenGalaxy

Yes, the drinks are in place of food. I can't properly eat normal food (not in the quantity required to sustain me normally) so the drinks are my only option. without them I'd be scuppered. Literally.

If they only cost about £1 per bottle then no problem as that is what I would, on average, pay for my food normally (I was never a big eater before my IBS struck).

I hope I don't come across as trying to 'sponge off the state' here. I'm not. I just feel that paying nearly £10 per day for special nutritious drinks seems rather expensive, especially given my low income.

sheeps68

If you're drinks are prescribed by a doctor you should get a prepayment certificate. If not ask to see a dietician and they may go down that route for you.

GustyGardenGalaxy

A few years ago, for the first few weeks I managed to get the drinks on prescription, but then the doc said 'no more' and that was it, so I now stump up £250 per month.

So would I see a dietician via the doc?

daska

Did your GP say why he would no longer prescribe them?

qwertyuiop12345

You should be able to get drinks like Ensure and Enlive on prescription from your GP. Then if you have a prescription prepayment certificate it will only cost you about £2 a week.

You should definitely ask your GP why he will no longer prescribe these. Could it be because you need so many as it is the only thing you can consume (not that this is a good reason)?

If your GP cannot give you a reasonable explanation as to why he won't prescribe then you might want to consider seeing a different GP.

soolin

This is a tricky one as it could be argued that some foods are available on prescription, is there a self help group or charity where you can get proper advice?. If you know that others have successfully received these items on prescription then it would make your own case easier to prove.

As a coeliac I do get certain foods prescribed but only becasue they used to not be available over the counter. I fully expect that to change in the future now that gluten free pasta etc can be purchased in supermarkets, at the moment the only item I cannot buy without a prescription is 'fresh' bread.

The only other real problem I can see here is that coeliac (and diabetes which is another area where special food is often required) can be properly diagnosed and I don't believe that specialists yet have a definitive test for IBS. Even with coeliac I have to have it 'proved' by biopsy, those people who refuse a biopsy are not technically allowed prescriptions and neither are people who prove negative by biopsy but cannot eat gluten or wheat without becoming seriously ill.

babyhead

Sorry to hear you suffer from IBS. My sister in law also suffers it and it really is awful.

I get ensure drinks on prescription (have lung disease) from my GP but I also have prepay cert. I didn't realise they were so expensive

I would imagine that your GP won't prescribe the drinks as they don't want u to get dependant on them. They always tell me to eat first then have drinks afterwards as an extra boost. I appreciate this is difficult for you so I would suggest go back to your GP and explain this - if they wont help perhaps get 2nd opinion or demand to be referred to dietician. I know from my sister in law that getting any help from GP is difficult when it comes to IBS but she got there eventually and now has an understanding GP!

sleepymy

Have you tried contacting the manufacturer directly to see if they would supply bulk orders at a reduced rate?

chopperharris

I suspect that your doctor reckons your ibs is a lifestyle choice , you do get them gp's.I am of course assuming that the rest of your body is able to process foods as normal.

Are you on any other meds that can cause ibs , whats your fluid in and outs like have you been charted as an inpatient for it?

Is it a food intolerance that could be causing it?Have you had a full intolerance test for the usual culprits , dairy , gluten etc , and can process vegetables easilly?

I know you said your not getting enough food to live off , hence the fortisips etxc , but I cant see the correlation with ibs while not eating....if anything it should lessen on starvation.Have you tried the probiotic route?

Have you had the both ends endoscopy ie you have a speciaist?

If yours is as bad as you say then see a bowel specialist , not just a gp , get a definate diagnosis from them.Not that this matters with gp's as a specialist prescribed a pill for another problem of mine and the gp denied it.

Change your lifestyle , how much sitting do you do a day , how much fliud , is the fluid diet drinks , how much fruit , how much walking(sorry for asking if your in a chair)?

Do you drink coffee all day , are you an ex smoker or smoker , a regular drinker and the big blamehound overweight?

I dont think IBS is a qualifying disability as such unless its the full on blood runs and long term ulceration.I am lucky enough to not have it that extreme but yet I could not give an employer my time without being fired for too much instant rush dunny time.....luckilly I dont have to claim dla.

Lastly ask your consultant about trialling asacol.

Both myself and wife suffer from it , hers is the more severe of us.My culprit was overweight , drinking , and denims....yes the denims when changed to eslaticated trousers all but cured it but being overweight it was only exageratting the problem not causing it.