Fund raising advice

Mupette

This may not even be in the right place but I need to start somewhere - it may need to be in small biz.

History

I have MS I am fundraising to pay for treatment, (not asking for money here this is not what this is about)

I am having very very bad time at work which is affecting my mental health well being, and it would be better prior to treatment to stop work and perhaps just concentrate on the fundraising side of things.

I've found something i can make at home that people love and its been a small success and i would like to try and work on that and see where that would take me.

Money / Benefits

Leaving work would help me but obviously we all still have our bills to pay and NI to pay etc.

I thought about ESA as i am quite sick, but would they want my fundraising money even through thats for essential medical treatment, the treatment is available here in the UK but i do not fit the criteria, as many with MS find, and so a lot of us are going abroad for it.

I really don't know where to go with this, I'm not out to deceive, this money is for treatment not for anything else, or do i just forget even thinking of ESA?

Bananas123

hello,

reading, it sounds like you seem a bit like deliberating picking and choosing, between working with additional income and claiming benefits with additional income.. (not having a go etc, just saying).

you are allowed to do permitted work etc, and earn some to top up esa:

Your ESA isn't usually affected if you either: earn up to £20 a week. work for less than 16 hours a week and earn up to £115.50 a week, for 52 weeks or less (or for any length of time if you're in the support group)

i would no way reccommend esa as an "option" vs working... its MUCH better to be working IMHO,

with not being eligable for treatment in the U.K. etc, it may count against you, unfortunately also as they would probably deem it that you are capable of work (...as you are now, anecdotally).

like you can't just go to them, and say "i am really ill; give me money", you have to 1) be eligable for their criteria and 2) prove every little bit to them.

also the process takes months and months.

---

however, if you are ill, and cannot work / have no/little income and can prove you are ill, then you should apply for esa, obviously.

Mupette

Bananas123 wrote: »

hello,

reading, it sounds like you seem a bit like deliberating picking and choosing, between working with additional income and claiming benefits with additional income.. (not having a go etc, just saying).

you are allowed to do permitted work etc, and earn some to top up esa:

i would no way reccommend esa as an "option" vs working... its MUCH better to be working IMHO,

with not being eligable for treatment in the U.K. etc, it may count against you, unfortunately also as they would probably deem it that you are capable of work (...as you are now, anecdotally).

like you can't just go to them, and say "i am really ill; give me money", you have to 1) be eligable for their criteria and 2) prove every little bit to them.

also the process takes months and months.

---

however, if you are ill, and cannot work / have no/little income and can prove you are ill, then you should apply for esa, obviously.

Thanks for this.

Not picking or choosing, I chose to go back to work after my dx of MS, but its getting too much, i am out sick more than i am in, always threatened with the MAT procedure for sickness, the making money is just for the fundraising for the treatment, it can't be given here in this country. Believe me i have tried. I did think that moving to benefits of ESA until after my treatment next year would perhaps be a help with the NI stamps,

I'm not looking to actually take a wage to cover what i loose finishing work, just to get the funds in.. Its really confusing what to do, I want to do right, being disabled and called a benefits sponger I've had my share of.

Bananas123

hello,

again though, "chose to go to work" "fundraising" "money making" "help with stamps" "[not eligable for treatment]" ....."getting the funds in".

---

if you are disabled, you are also eligable for PIP (in addition to esa)

but all you have said, really is about OBTAINING MONEY (as far as i can read).

> bare in mind everyone (relatively speaking) on ESA, is SICK, sometimes only priority people get treatment on the NHS, due to expense of treatment.

if you are not reffereed for treatment by medical proffesionals, then what evidence can you provide regarding ?

(beyond proving that, although you have MS, you are capable of working (by history), and deemed (by the NHS ?) to be NOT in need of top-tierd medical assistance etc.)

...but anecdotally again "want to get the funds in".

it doesn't read well tbh, i don't KNOW, but don't really think you would be eligable for ESA, unless missing something.

> you would have to prove i think "a change in circumstance" (being a genuine worsening of condition, then you have now (based on you working....))

Ames

There's a chance that your partner's income would affect ESA if you qualified on medical grounds. If you were in the WRAG and qualified for contribution based then you'd only get a year. If you were in the support group it could carry on longer.

If you have a partner who works full time you probably wouldn't qualify for income related, so whatever you saved for treatment wouldn't come into it.

If you qualify for PIP that's non means tested and can be claimed while working.

Mupette

Bananas123 wrote: »

hello,

again though, "chose to go to work" "fundraising" "money making" "help with stamps" "[not eligable for treatment]" ....."getting the funds in".

---

if you are disabled, you are also eligable for PIP (in addition to esa)

but all you have said, really is about OBTAINING MONEY (as far as i can read).

> bare in mind everyone (relatively speaking) on ESA, is SICK, sometimes only priority people get treatment on the NHS, due to expense of treatment.

if you are not reffereed for treatment by medical proffesionals, then what evidence can you provide regarding ?

(beyond proving that, although you have MS, you are capable of working (by history), and deemed (by the NHS ?) to be NOT in need of top-tierd medical assistance etc.)

...but anecdotally again "want to get the funds in".

it doesn't read well tbh, i don't KNOW, but don't really think you would be eligable for ESA, unless missing something.

> you would have to prove i think "a change in circumstance" (being a genuine worsening of condition, then you have now (based on you working....))

Sorry my cognitive skills are really bad at the moment. I have not put everything in, it would be so long.

My condition is deteriorating, I love my job, but I'm home sick more than i am actually in work, I've asked for quite a few reasonable adjustments one to be work from home which got refused. I am more of a burden than an asset to the team and treated so.

The treatment in the UK is a trial that is governed by other trials throughout the world so they are all sticking to set rules (gives a better reading when reports do eventually come out in years to come) but some of us can't wait it will be too late. Hence why time is important for treatment, its HSCT, if you google watch out for the dodgy claims as there are some. Don't worry i have done my research. I'm booked into one of the best hospitals in the world and one of the cheapest too.

I don't want to sit on my backside and claim sick for the rest of my life. There is treatment that can halt this progression and possible return to normality of damage caused to my body with this disease, I want to be normal again.

This current relapse has been a bad one, I still can't see properly, hearing has not returned fully, mobility is shot. I've worked part time for only 4 years its not long, But its destroyed any quality of life i ever had.

Ames wrote: »

There's a chance that your partner's income would affect ESA if you qualified on medical grounds. If you were in the WRAG and qualified for contribution based then you'd only get a year. If you were in the support group it could carry on longer.

If you have a partner who works full time you probably wouldn't qualify for income related, so whatever you saved for treatment wouldn't come into it.

If you qualify for PIP that's non means tested and can be claimed while working.

See above my work has only been 4 years part time, and yes i have a husband. It looks like its a case of not claiming ESA.

GlasweJen

For crying out loud the OP has MS! She's perfectly entitled to enquire about giving up work.

Mupette we have MS patients at work and it's a horrible disease. start applying for PIP if you're not already on DLA as you can claim pip and work. Once that's sorted you can re-evaluate though you might find your work decide on their own to start proceedings to "retire" you on medical grounds - this sounds much scarier than it is.

If you're in a union they can help with the work stuff but also enquire about Union grants, my Union gave me money towards a sports wheelchair when I was in rehab.

One thing to remember about trials is that you might not get the trial drug. It's a toss up if you're drug or placebo. If you're paying for medication that's new out ask your consultant to refer you to your rare diseases group and ask for funding for the drug here.

Mupette

GlasweJen wrote: »

For crying out loud the OP has MS! She's perfectly entitled to enquire about giving up work.

Mupette we have MS patients at work and it's a horrible disease. start applying for PIP if you're not already on DLA as you can claim pip and work. Once that's sorted you can re-evaluate though you might find your work decide on their own to start proceedings to "retire" you on medical grounds - this sounds much scarier than it is.

If you're in a union they can help with the work stuff but also enquire about Union grants, my Union gave me money towards a sports wheelchair when I was in rehab.

One thing to remember about trials is that you might not get the trial drug. It's a toss up if you're drug or placebo. If you're paying for medication that's new out ask your consultant to refer you to your rare diseases group and ask for funding for the drug here.

Thanks GlasweJen.

I've been on DLA for a few years now.

I'm not going on the trials I'm doing the full Monty in Russia I don't qualify for trials. That's useful information on the Union side I need to speak with them today as when i do return to work it will be another MAT meeting so I should get the ball rolling with that one.

densol_2

OP - sorry to hear about your diagnosis. Best to just ignore what Banana has said, once again - this board is about entitlement.

Have you enquired at work about medical retirement ? Do you have a pension scheme and able to check the rules ?

ESA - if you have enough NI contributions you can claim contribution based and hopefully get the support group ?

The question is legally does " fundraising " count as " income " when on contribution based ESA. Its not earned income or pension - but I honestly dont know. On contribution ESA those are the two aspects that affect your entitlement. On income based its a bit trickier ! Maybe do some research in the aspect of funding.

PIP - id put a claim in and gather together your medical evidence ( just noted you are on DLA - so obviously you would not claim PIP till told to )

Mupette

densol wrote: »

OP - sorry to hear about your diagnosis. Best to just ignore what Banana has said, once again - this board is about entitlement.

Have you enquired at work about medical retirement ? Do you have a pension scheme and able to check the rules ?

ESA - if you have enough NI contributions you can claim contribution based and hopefully get the support group ?

The question is legally does " fundraising " count as " income " when on contribution based ESA. Its not earned income or pension - but I honestly dont know. On contribution ESA those are the two aspects that affect your entitlement. On income based its a bit trickier ! Maybe do some research in the aspect of funding.

PIP - id put a claim in and gather together your medical evidence ( just noted you are on DLA - so obviously you would not claim PIP till told to )

I have DLA and just awaiting the invite to move to PIP but I don't hold much out for that, tbh, after treatment it would be lovely to go back do DWP and say I don't need this now (not much of a dream but it is one i'd like to do)

I've only worked for the company for 4 years, 46 1/2 wouldn't i be too young? to retire medically. Pension is tiny, not worth cashing in later. I'm one of those stayed home for a bit bringing up baby, became a single mum and worked on off as and when.

When i was on ESA before returning to work I was in support, but i didn't want to stay on benefits, i thought i could learn to live with the MS and get back to work, the plan hasn't gone as i wanted.

I been told to look at trusts, so that someone else holds the fundraising in trust for my treatment, again i wouldn't want that to be seen hiding money. so torn about that.

I am exhausted of life at the mo, just so tired, I want to stop work, take a huge strain off me. But .. realistically i still have bills. Yes i am married, but we are not rich we are frugal, we do all we can not to waste money. No big mobiles / tv packages etc.

Even just being on ESA for this next year prior to May when i should be going (or around that time) will help.

Thanks Densol

GlasweJen

If it helps my Union is UNISON. If you're a member of any professional bodies or you or your OH have any forces connections that's a potential source of funding too.

Also don't talk yourself out of entitlement, lots of our patients have support group ESA for MS. Obviously it depends on the DWP but it's worth speaking to your doctor and asking if they think you meet any support descriptors.