Desperate for some advice

summerbee

I have an extremely severe form of IBS which leaves me unable to work/socialise/drive and I can barely get myself to the loo most of the time, let alone leave the house. It has continued to worsen over the past few years. It started when I was at university and so I am ineligible for any benefits. My husband works full time but we are struggling financially and emotionally-he has to take lots of time off to come and help me when I have collapsed unconscious at home from the pain and then become very dopey from the morphine. Does anyone know of anywhere I can get help, either financially or practically? My GP is nice but can't suggest anything since he doesn't know of anyone who doesn't qualify for benefits! Prescription costs are especially an issue since most are unexpected, therefore making a pre-payment subscription not good value for money-last time I got one I only needed one prescription in the month yet in July so far I have had 6! Any advice much appreciated, I am so upset and at the end of my tether.

Indie_Kid

Have you tried bowel and bladder foundation ? You may qualify for personal independence payment (PIP) if you have care and /or mobility needs.

DomRavioli

You can also request a HC1/2 form, for help with prescription charges on a low income. That should help.

Indie_Kid

You have to be on a very low income (same as ESA / JSA) to qualify for free prescriptions that way.

summerbee

Thanks for both those tips. I applied two years ago when it was a Disability Living Allowance but I wasn't considered ill enough but have got significantly worse so will apply again. I also applied for help with NHS costs but didn't qualify due to my husband working full time-he earns a fraction over the threshold. I spent around £250 on prescriptions last year and need dental treatment I also don't have the money for so putting it off indefinitely. We don't have any luxuries like sky tv, holidays etc and today had the bad news we need a new boiler at a cost of at least £2000. So now struggling more than ever. It is also incredibly humiliating to be financially and often physically dependant on my husband, not having a penny of my own money.

KxMx

Do still consider a Pre Payment Certificate for prescriptions.
I know you found it didn't "pay for itself" last time, but maybe £2 a week (when paying for the yearly card by direct debit- 10 monthly payments of £10.40) would be worth peace of mind and be good insurance against unexpected expenses for prescriptions.

Was the diagnosis given after through testing? Bloods/scopes/scans? Are you seeing a Gastro specialist for your condition? If not, get your GP to refer you asap. If so, maybe asking for a second opinion might lead to more help for your condition.

faerielight

I feel for you. I have severe ibs and my bowel perforated due to it.. I would def reapply for the now changed dla (PIP) , you will score points for not being in control of your bowel. Go to benefits and work .co .uk .. they are a fantastic site advising about benefits. it's worth joining for the guides they offer. Again, I do feel for you, bowel problems are miserable.

Indie_Kid

faerielight wrote: »

I feel for you. I have severe ibs and my bowel perforated due to it.. I would def reapply for the now changed dla (PIP) , you will score points for not being in control of your bowel. Go to benefits and work .co .uk .. they are a fantastic site advising about benefits. it's worth joining for the guides they offer. Again, I do feel for you, bowel problems are miserable.

There are, however, good enough websites out there that don't charge. And then there's places like CAB who should be able to help with the forms.

OP - if you can't justify the cost of a pre-payment certificate, have you asked your GP if you can get the items cheaper over the counter? I was prescribed loperamide several years ago and was told it's the same as immodium. I really needed some last week urgently; so just went to the supermarket and got some for 85p.

summerbee

I've been under the care of a gastro consultant. Pain management team and a dietician for 6 years now, including a specialist at a national hospital for gastro problems. Had every test in the book, most very unpleasant. Keep being offered more counselling to cope but I need practical advice and some financial aid. Even my MP hasn't been able to suggest anything other than keep applying for ESA (I don't qualify, obviously and neither IBS or the morphine I take are recognised as things which prevent you from working/turning up at the job centre frequently!). Sorry if I am ranting but constantly in pain and exhausted. The CAB were very nice but said they hadn't come across someone in my situation before...if I had a pound for every time someone said that to me I would be rich!

Boomfloom

Assuming you are a woman, did you try contraceptive pills? It didn't sort the problem out for me, but the pills stopped my periods which is when my attacks were the worst (like: "phone the ambulance, I must be dying" kinda bad). Quite amazing you got morphine - I heard that low doses help a lot but I was only ever prescribed antispasmodic drugs that didn't help much at all.

Seeing as you are unable to work, I hope you applied for ESA (you qualify for WRAG at least if you are incontinent) - you will only be seen twice a year by an advisor and get the national insurance contributions.

For emotional help, have a look at https://www.ibstales.com. They review different treatment options, embarrassing stories, etc. Bear in mind that not everything works for everyone. IBS is a catch-all term for bowel disorders where you cannot pin point an actual cause.

I hope you had the exclusion tests done (coeliac disease, Crohn's disease, lactose intolerance, colonoscopy) and that you tried the FODMAP diet. Get in touch through private message if you want to talk more. I have been incapacitated by IBS for over four years and feel so alone - nobody but my partner understands it but then nobody wants to hear the details either...

KxMx

Boomfloom wrote: »

Seeing as you are unable to work, I hope you applied for ESA (you qualify for WRAG at least if you are incontinent) - you will only be seen twice a year by an advisor and get the national insurance contributions.
.

Being in the WRAG for ESA is much more than two interviews a year, just last week my advisor told me they have been directed recently to see people once a fortnight. Luckily I now have to attend only monthly [increased from bi-monthly] with directed work activity on top. And I'm not in the Work Programme!

Have you looked into ESA because it's not about condition/meds, it's getting enough points from a series of descriptors, including incontinence, to pass and be allocated a group depending on which descriptors you meet. If the accidents are frequent then you may qualify for the Support Group, where you are basically left alone.

Do certainly apply for PIP and get help filling in the forms too.