To ask for any financial help?

[danidandan]

This is a long one so if you stay with me, thank you!
I'm 27. Up until I was 23, fit and healthy. I was diagnosed with an extremely rare type of cancer, the survival rate for 5 years post diagnosis is 12%. I'm 3.5 years on. I have been extremely lucky enough to have no evidence of cancer left... extremely lucky and one of the very few that come out of this rare type. It may come back, but im watched closely a lot. The treatment I had was a horrific stint of surgeries and chemo which ended up on me being on life support for a short while. But here I am, 3 and a half years on here to tell the tale and my heart couldn't be more grateful for my surgeon who literally saved my life.

I've been back to work, on and off since treatment. I've some how by the luck of god managed to carry and birth a baby through IVF. Here's the thing. My health is deteriorating. The long term effects of this treatment have shot me to pieces, I'm on a lifetime of different medications. Some days even weeks, I'm fine. But others I'm in bed, puking, unable to eat and drink. I'm in hospital 4-5 times a year as I'll go weeks without going to the loo.

There's no fix to it, it's part and parcel of the trauma my body went through, and still goes through now.

I'm struggling. I've gone back to work after having a baby. But I'm having to take a week or two off every month or so, and I simply can't afford it, but the days and weeks where I'm poorly, I can't get out of bed. I feel like I'm letting my little girl down and not contributing to the world as I'm such a get up and go type of person.

I'm getting to the stage now where I'm struggling to work and for me to hold down this job, I need to be there for my contracted hours. I work 4 days a week. Reducing my hours won't help as when I get poorly it's unpredictable, so it doesn't matter what hours or what job I commit to, I can't commit to the hours. My surgeon has signed me off of work many times and it's getting to the point now where In the near future I don't think I can work much at all.

I'm married with my husband who I adore. He does everything for me. I guess what I'm asking is, would I be entitled to any kind of benefits or help from the government? My husband is on a good wage, but with our rent and other bills that come out, if he covered everything (we don't spend, we're pretty good with money and have occasional treats,) we would only be left with a few hundred pounds a month. But with a baby under one, our rent is extortionate, and other things, it's not enough. I couldn't ask him to support us and work all the hours round the clock for me to feel like I'm sat at home wasting time when the days I feel okay, I could be working. But it's so unfair on an employer to have somebody so hit and miss.

I'm at a total loss. In short, we can't afford to live off my husbands wages. But he earns too much according to the calculator online for us to get any help. I'm so stuck. I'm so sad. I'm so lucky and feel awful for complaining. But my health is shit and I'm struggling to keep my job, let alone keep UP with my job tasks.

AIBU to try and get some help from the government? Is it even an option?

Sorry this is long, I don't want to drip feed so thank you for staying with me.

Stay healthy everyone xxx

I think you'll struggle to get help if your DH earns over the benefits threshold.

Try www.entitledto.co.uk/ to see if you're eligible, or if you would be if you quit work. Remember you won't get jobseekers if you quit work voluntarily (rather than being dismissed for poor attendance).

Is your employer happy to keep you on with your sickness record? If so, if you can bear it then try to stay employed. If you're too exhausted working full time try reducing your hours - when you're feeling well, you can spend more quality time with your child, assuming you can afford childcare for when you're ill.

And I forgot to say, congratulations on being in remission! You've been through such a huge amount, it's OK not to try to be superwoman.

If you're considered permanently unable to work you may be entitled to non means tested ESA.

www.gov.uk/employment-support-allowance/eligibility

I'm sorry to hear you're struggling, living with a variable disability is so tough as you never have any certainty about what you'll be able to do.
I know it's easier said than done but don't be hard on yourself.

@HavelockVetinari

Thank you for your reply and thank you for reading through my essay!

DD goes to the childminder 3 days a week.
I left my previous job for a new one after maternity as my new job is closer to home, up the road from childminder etc. So I haven't been there too long.
I love my job too. I think maybe reducing my hours could help thinking about it, yes it's less money but it would be less childcare expenditure too.

I would just hate to cut my hours, and then still have to have the odd week or two off. I feel like I'm taking the piss. As unfortunate as my health is, I totally understand it's not really my employers problem.

I'll take a look at the link, thank you

@goodnessidontknow

Thank you for your kind words. This is the thing, I want nothing more than to be able to work full time, provide for my DD and do all the normal things I used to take for granted!

I'm seeing my consultant next month so I'll see what they think. I'll take a look at the link. I feel bad for even suggesting help from the government, not as a pride thing. But because I know people struggle more than me struggle to get anything.

But things will be okay. They always get better in the end

You should apply for PIP as well as as non means tested ESA.
I would advise getting support filling out the applications from CAB and definitely appeal if your first application isn't successful

My husband is on a good wage, but with our rent and other bills that come out, if he covered everything (we don't spend, we're pretty good with money and have occasional treats,) we would only be left with a few hundred pounds a month.

how much is a few hundred after bills have been covered?

@HumourReplacementTherapy

You should apply for PIP as well as as non means tested ESA. I would advise getting support filling out the applications from CAB and definitely appeal if your first application isn't successful

Definitely apply for PIP - if you cannot work, then that is what it is there for

I’m in remission from cancer and - fingers crossed - if I stay well, I’ll continue working. But if my health becomes precarious, then I’ll be looking for some kind of benefit to tide us over as a family. I don’t see claiming PIP as a cop out.

I hope you stay healthy. I’d ask for an assigned social worker and let them help you through the minefield of benefits you may be eligible for,

PIP isn't means tested and you can (in theory) get it whilst working. Definitely worth applying for.

You should apply for PIP (it’s not means tested) and also New Style ESA (not means tested but does go on your work history).

PIP is not there for people who can’t work it’s actually the opposite - it was introduced to try and offset some of the costs and difficulties involved in having a normal working or not life while disabled. It’s to encourage disabled people to cover costs like a cleaner or additional travel costs etc if unable to use public transport.

Apply now , the forms are a challenge but lots of support online

Could you do something like work less hours, but do them weekends, so that you don't pay childcare? Obviously try and get PIP but I know it's hard to get. Then go back to more regular hours once your DC is at school. I had to do this. It worked quite well.

I’m really sorry to hear how tough some weeks are for you and how much you’ve been through. A family member has been through a very similar experience and even now, years later she’ll have very bad weeks where she can’t get out of bed etc…You should be super proud of yourself and congratulations on becoming a mummy.

I’m sure you must be entitled to benefits due to your very serious health condition. I wonder if your surgeon might be able to support your application? Also, it might be worth speaking to some of the cancer charities. They often have experts who can advise on applications and benefits and support you through the process. If no luck with that, then the CAB. You deserve to enjoy life after all you’ve been through. Good luck! x

OP, in some areas Macmillan have people who can help with PIP applications, and they're very good.

Definitely get help with claiming, it makes a huge difference.

If you've paid enough NI contributions over the past 2-3 years then you can claim New style ESA once any ssp has been exhausted. You can also look at PIP. You may qualify for Universal Credit , maybe you need to factor in being awarded LCWRA ( limited capability for work and work related activity ) element which can take a while to be assessed for but does make some people eligible for Uc when they wouldn't be without that element if you see what I mean. If you were awarded PIP then your husband can also claim a carers element on Uc which could also be factored in. Speak to a Macmillan benefits team, they can advise for long term side effects of cancer treatment also and help with completing PIP forms etc.

Macmillan can help you fill the pip form in, are you sure you won't get UC - if you've a large rent bill you might qualify ?

@IronTeeth

My husband is on a good wage, but with our rent and other bills that come out, if he covered everything (we don't spend, we're pretty good with money and have occasional treats,) we would only be left with a few hundred pounds a month.

how much is a few hundred after bills have been covered?

@IronTeeth As in just about enough for all of DDs milk and food, our food shops, petrol, etc.

That's with stopping things like gym memberships and odd bits we don't need.
DH is has a basic wage but most of his wage is commission based so it will be super hard to rely on. Sorry I should've mentioned that above.

@Frolie

I’m really sorry to hear how tough some weeks are for you and how much you’ve been through. A family member has been through a very similar experience and even now, years later she’ll have very bad weeks where she can’t get out of bed etc…You should be super proud of yourself and congratulations on becoming a mummy.

I’m sure you must be entitled to benefits due to your very serious health condition. I wonder if your surgeon might be able to support your application? Also, it might be worth speaking to some of the cancer charities. They often have experts who can advise on applications and benefits and support you through the process. If no luck with that, then the CAB. You deserve to enjoy life after all you’ve been through. Good luck! x

@Frolie

This is so helpful, thank you so much! Will get in contact today. Thank you for your kind words, I hope your friend is as okay as can be xx

Can you look at dla? If you can't work due to illness surely this is what it is for and it isn't means tested I don't think.

Also, if.your rent is high is there possibility of moving to a cheaper place? Or dh relocating his job to a more affordable area? Obviously if you are close to family where you are then that would be more priority to stay there as family help is invaluable when you are ill imo.

I know nothing about benefits so can't comment there but what do you do for work, roughly? Is there something you can do on a self-employed basis which makes other people less dependent on you at work, and which you can do when your health allows?

@maddening

Can you look at dla? If you can't work due to illness surely this is what it is for and it isn't means tested I don't think.

Dla is only for those under 16. You mean PIP - and PIP (as others have said above) isn’t means tested, or related to work. So someone can get pip and still work full time.

Exactly that, totally agree with you! Both of our families are around us within 15 minutes and they are invaluable when times are hard. When I'm in hospital and DH is working they help with DD, also the days I'm working, my mum picks up DD from the childminder everyday at half 3 and takes her home until I finish at 5 for dinner. We managed to upsize our house and cheapen our rent with a really lucky find during lockdown too!

DH works from home when I'm poorly so I can just have somebody in the house with me. I'm really lucky in that aspect. Just struggling with funds :(

@maddening

Can you look at dla? If you can't work due to illness surely this is what it is for and it isn't means tested I don't think.

DLA is now called PIP.

Ok OP this is what you need to do. (33 years in DWP/DSS)

First . Get yourself online and and find a disability rights organisation. Or make an appointment with McMillan. I would also recommend Citizens Advice but they are just so overwhelmed atm. Would also have said the Jobcentre but too many hastily recruited new staff who aren't knowledgeable enough to advise yet but this is what you need to look at.

ESA based on your payment of NI contributions over the last two relevant tax years. 19/20 and 20/21.
If you have been employed for that time then you should be entitled . You will need a sick note initially. After 90 days you will have a WCA (work capability assessment. ) and be placed in a category of being fit for work in the future or limited capability. The first category means your payment stays the same at £74.70 whilst the second group increases to £114.10 per week. The first category ends after a year. The second group continues indefinitely.

Meanwhile you should have claimed PIP. This is a disability benefit and is not relevant wether or not you work. Claim it now but get someone from one of the organisations-above to fill in the forms for you. The standard rate on the care component is £60 per week and the higher rate £89. There are additional-payments for mobility. More importantly- qualifying for PIP care at the standard rate (which sounds like you would qualify for and should have had since your cancer diagnosis and treatment) is now the 'thing' that designates you as disabled as their is no such thing as as 'registered disabled'.

Once you have done that you need to do a universal credit calculation . Based on the fact that you have PIP.. this will give you a much higher threshold for claiming. Calculate based on husbands wages - you being unable to work due to disability and receiving PIP , your rent costs and childcare if you pay it for you to have a rest when unwell. Once you claim ESA you need to add that in too.. I think you will be surprised. UC has a poor reputation with those out of work - as it's designed to 'encourage those who can to work' - however as a top up on wages and support to the genuinely disabled it is much more generous, particularly for those who claim rent.

Another thing is to check how much your local housing allowance is. The whole country has different rates for different councils. None of them are realistic imho as far to low - but if your rent is a long way above the supposed 'average' you need to look for somewhere a bit cheaper as rent help is based on a % of the allowance not your actual rent.

lha-direct.voa.gov.uk/