Benefits in the UK?

Hi all,

I think this site is mainly US-based but maybe someone can give me some pointers.

Short story is - I've been ill since the start of April and a few weeks ago was diagnosed with cerebellitis. I've been going to work throughout, because a) I'm a workaholic and hate being off, b) I've always been a sportswoman and have a "play through the pain" mentality, and c) most importantly, I work in law, and if I'm not at my desk my clients end up paying the price.

My medical certificates (needed for the handful of days I was off) basically say I should have been off work from April to October (at least).

Anyway, I've had a "bad day" that feels like it's lasted a couple of weeks now. I'm considering asking my notoriously unfriendly and unhelpful HR department if I can switch to 4 day weeks, to at least give myself another day of sleep to recuperate a bit.

Problem is while I think I can manage my caseload like this, what I can't do is manage my finances - 4 day weeks would also result in a 20% pay cut. So I'm wondering what potential benefits may be available to me. I haven't really looked into it out of a stupid pride thing, but I'm opening up to the idea that I flat out need them.

As I am now, I can't walk any length and can only get the bus to work a couple of days a month (relying on door to door lifts) because I'm so tired and have gait disturbances. As a result I'm pretty much housebound at weekends too. My mother (who is herself in her 70s) drives me just about everywhere, and her and my co-workers don't like me walking anywhere alone (even when I can).

There isn't consistently enough strength to make or even eat proper food all the time - I've been on McDonalds the last couple of days because I feel like I don't have the strength or co-ordination to use a knife and fork (and I feel pathetic for even saying that, heh).

I haven't even properly washed in a few days because I'm not sure I could get in or out of the bath, and I know I couldn't stand long enough to have a shower. (I've also injured my head a couple of times in the shower, so the whole thing just stresses me out.)

My memory (mainly short term) is so poor right now and for the last while that almost everything at work takes twice the effort.

Anyway - from my limited understanding of benefits, I gather that there is a limit with some as to how many hours can be worked. Can anyone point me to anything I would be eligable for on a 4 day (28 hour) week? I kinda feel stuck between a rock and a hard place. Keep working a full week, have enough money to live, and feel like I'm dying . . . or cut time, feel a bit better, and starve to death. Heh.

By lemonplegde
Posted August 9, 2008 at 7:56 pm
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well i'd recommend shortening your work week because time is a precious healer and you body is telling you it can't keep up..and in order to heal you must get the rest you need. I don't know how the UK works re:benefits..I know I had to give up my apartment which was one of the hardest things i had to do..for a year..but it was the best thing for me at the time..i ended up living with my mother 4 days a week and brother and his family 3 days a week. It was easy but I wasn't alone and could ask for help if i needed it.
keep us updated...
thinking of it as an athlete who goes back to the game without rehab... I know your mindset can get you to a better place for yourself mentally and physically.
tish menigitis 92 enceph 03

By lemonplegde
Posted August 9, 2008 at 8:07 pm
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just know that this long day will pass..i think we have all had them...and know that you are not alone...
I had to get back on to just pass on a bit of an encouraging note...
can you bring a bowl of water and soap to an end table by your bed and just wash off a bit..it will make you feel better..i promise..and maybe you can come up with a plan for meals because what you eat is important to your health...i only say this because i care.. and i have been exactly where you are...
tish

By Mac33
Posted August 9, 2008 at 9:25 pm
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Hey hey Lemon,

Thanks for the words of encouragement. Especially as in March I was a fitness freak and now I'm seriously wondering if I can ever even skate again (let alone play hockey) . . . I used to be able to work 12 hour days without batting an eye but now I have to nap at lunchtime . . . I used to be very bright and sharp but now I forget what I'm saying mid-sentence . . . it's tough to even work out what I need to do, sometimes.

Unfortunately (without getting into details of my finances etc) I flat-out can't take a 20% pay cut. So just going down to 28 hours is simply not an option for me. What I could possibly do is rearrange some hours a bit, say take one day off and then work an extra 7 hours spread over the other four; this I think I could manage, and an extra day at home would more than make up for my other 4 days being longer.

If I decide to go down that route I think I was ask HR if I can choose the extra day off on a week by week basis, simply because that way I would have to miss any trials or the like.

Of course the problem with that is I work a decent amount of overtime in any given week, if that was flexi I would lose the overtime pay and again . . . de facto pay cut, heh. Can't win!

Tomorrow is shower day I think. Wish me luck, lol.

Anyway, yeah, any help re benefits in the UK still much appreciated ;-)

By MichelleN
Posted August 9, 2008 at 10:06 pm
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Mac33 I understand not being able to wash or eat. I agree with lemon that just rinsing or wiping off is good.

I also used to work long hours and it didn't bother me. That certainly isn't the case now. I forget things in mied sentance or even start the next sentance before I said the thing before. It is definitely frustrating.

I have had plenty of times where I couldn't get out of bed let alone eat. It is very hard to have that because if you don't eat you don't have the energy to eat. It's a bad circle.

I wish you luck because it is very hard. I hope these problems go away soon.

Michelle

By shazza1008
Posted August 10, 2008 at 10:49 am
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hi mac33
l live in the uk too
im severely disabled
and cant work at all
but l think you should as
at the citizens advice bureau
they'll be able to answer all
your questions!
sharon

By jerseagal
Posted August 10, 2008 at 3:48 pm
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Re-read your posts as if someone else had written them. What kind of advice would you give them?

Without a doubt you would tell them to put their health first. You sound like a wonderful success driven, independently proud young person. You are constantly compensating for weakness caused by the illness. Be very careful of fatigue. Your brain is sensitive and can shut down energy to peripheral areas to protect the essential functions if they are threatened. I use the example of an Electric Company rewiring after a storm. Wires are down, The customers are all clamoring for power. The most essential areas get power first then the rural areas. One thing we all have in common is fatigue is our greatest enemy during recovery.

I know nothing about the benefits in UK but asking for a shortened work week until your symptoms settle would be a valid request. If the citizens advice bureau is similar to our social service office. That is a good place to start searching for what ever assistance you need.

Regardless, listen to what your body is telling you. As a sports person you understand the need to conserve energy for the later periods, laps, last quarter.

Trust your instinct, It's wisdom shows in your orignal posting.

By Mac33
Posted August 10, 2008 at 6:35 pm
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Thanks Jerseagal, and I will definitely be contacting the CAB - but as I said a couple of times already, reduction in hours without some kind of benefit to make up for the resulting pay cut is just not an option.

While health is of itself more important than work, ultimately I do need a certain amount of funds coming in and a 20% pay cut would, as I said in my first post in this thread, simply be untenable.

In an ideal world I could cut outgoings, get help from parents or siblings, go into savings or whatever - but this isn't an ideal world and those are not options (I don't think it's necessary for me to go into details on a public forum). Hence me asking if anyone knew if/what applicable benefits may be available in the UK.

By Paulinha
Posted August 11, 2008 at 4:24 pm
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Dear Mac33

When I first woke up from my E, I wondered why they set me up to go on disability from my work right away - but now having read what you and others have been going through - I understand. I thought I was going to be up and ready and have my life back, but with my short memory and seizures and whatever... I know I would not be able to fulfill full employment. I'm just very lucky that I have a very good job with good benefits and I keep my fingers crossed that things don't change where payment of benefits are concerned. But I live in Canada.

You need to take a look at your benefits package - what kind of benefits you paid into. Is there such thing as "short term or long term disability care" in your package at all? Also - what kind of benefits does your government pay?

If you can work? Well, in a sense that is great - because it is really boring staying home. But, I would not be able to afford to take care of myself if I only worked 4 days a week - or worse if I got fired?

Everyone has given great advice here, but you definitely do need someone to help you out. I'm a single parent, with a mortgage and bills to pay. I do a lot of my stuff on my on own. So we have to give ourselves pats on our bat for everything we do.

Good luck!!

By Mac33
Posted August 12, 2008 at 6:02 pm
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Ingrid, thanks for the link - I think I've looked at that site before, but didn't necessarily take it in too well . . . I'm sure most people here understand the difference between reading something and recalling it for later use, heh.

Paulinha - I don't have a "benefits package". My work provides no sick pay (they don't have to), and statutory sick pay (basically paid for by the government) is about £15 a day, and basically only kicks in if you're off work for four days in a row. £15 a day is next to useless anyway, and non-existent if you're off here or there.

As far as I know I wouldn't be eligable for Incapacity Benefit at all because I am at work (never mind that my doctors have told me not to go to work for months now - apparently if you near kill yourself getting to your desk every morning that just means you get treated like you're 100% healthy - grrr). Disability Living Allowance is the other "main" benefit but I don't know the ins and outs of it at all.

Thanks again

Mac

By dannon
Posted August 12, 2008 at 7:29 pm
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The organization was created by and is championed by a Canadian.
We have and have had members involved in discussion here from North America, Europe, Asia, Africa and Australia. I don't recall anyone from Antarctica or South America, though we had someone go to South America to be Cured (didn't work).
So don't feel you're any less important than anyone else because of geography.
Truth is - there have been a lot of people here from the UK -

By Mac33
Posted August 13, 2008 at 4:12 pm
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Hey Dannon,

Thanks for the sentiment - it's not about feeling less important though (lol, I'm your typical arrogant Brit who thinks we still outta rule the world!), more like feeling that there's not as much relevant information. Threads about the USA system (both for health and benefits) for example tend to be longer and with more useful info, simply because there's more Americans here.

Lemon - kicked ass in the meeting, yeeeooooo* ;-) Slept at my desk at lunchtime and have been yawning almost constantly since, but even so, lol.

* Yeeeeooooo = Northern Irish expression of delight

By MISSY-A
Posted August 17, 2008 at 5:01 am
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Hello

I suffered from VE 25 years ago and have asked for no help/benefits during this time - like you I have worked. I live in Lincolnshire in the UK. I applied for Disability Living Allowance (DLA) in April this year as I was finding life harder than before - I got DLA. I had to fill in a long questionnaire on-line and then submit it, again on-line to the DWP. I get the Higher Rate Mobility and the Lower rate care as I find washing/dressing not to bad. Go to the goverments Website and look under benefits - also there are no restraints on working hours - you can still work four days a week. Alternatively there is Incapacity Benefit but you are right that this will only allow you to work 20 hours a week and I didn't go down this route as I felt I wasn't incapable - again go on the government website - there is benefits for you. Mine (DLA) was only backdated til April my Mum suggested they should backdate it 25 years!

By Mac33
Posted August 22, 2008 at 2:59 pm
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Just to make my day go better . . .

I read up on the DLA website. According to the rules, as I do not actually need to be supervised frequently, I qualify for the lowest rate of the care component: £17.75

Regarding mobility, I need supervision when out and about but can still walk, so that would get me the lower rate component: £17.75

That's £35.50 a week, or £1,846 a year.

I have to laugh at that. My life consists of going to work, chugging back caffeine all day and getting gradually more doped on painkillers so I can approximate being productive, then coming home and sitting down until I go to sleep.

That's my life.

What financial help would be useful? Oh I dunno, maybe an income-linked benefit that gave me a day off here and there when I needed it? Instead of a slap in the face?

At my current - and low, but remember out here in the provinces we earn half what our mainland friends earn - salary, that £1,800 would equate to approximately one day off every two weeks. And of course I GUARANTEE that what would happen if I took the benefit and got Monday off every two weeks, is that Tuesday every two weeks would see me working at double speed to do two days of work. So I would be no better off.

It's like the setup is fucking ASKING me to scam money where I can, cos hey, if I play by their rules I'll either be dead in a few years or I'll be bankrupt.

Ironically, if my money went on renting a property various agencies would be only too happy to pay for it. Of course because my money goes on maintaining the family home, I guess I can just go fuck myself. Argh!!!

By Jensibel
Posted August 26, 2009 at 2:22 pm
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Hello Mac33,

Firsty, I'm sending you my full sympathies for all the headache and heartaches you've been going through. Sounds like it's been a real up-hill battle for you.
I'm also English (i live in West London) and an Encephalitis survivor. I had the illness in 2005 and by 2006 it became clear that I couldn't hold down my old office job. I tried applying for state Incapacity Benefit. But my claim was refused. The application form was mainly about physical disabilities, and I have a perfactly good physical health. Yep, I can walk, talk and chew gum! But what I couldn't highlight on the benefit claim form was my mental difficulties after encephalitis. Memory is the biggest problem, but also fatigue and sensual awareness.
However, I've just found out that the Incapacity Benefit is going to be replaced by "Employment and Support Allowance". Apparently applicants for this will then be given a 1-on-1 work capacity assessment meeting. It'll still be handled by JobCentre. It will then be JobCentre's task to answer you that irritating question, by suggesting what sort of jobs would be right for you and what you are capable of!!
I'm going to try to find about more about this change and probably apply for it myself.

Wish me luck,
Jensibel. xxx

By misseaster13
Posted November 5, 2009 at 9:57 am
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have you thought about working from home, it seems you have a good chance of offering your services in within the law field,you do need to get a happy balance between work and healthy living if not whats it all about? as you say what benefits are available are peanuts,maybe your local advice centre can help you take a new direction that will benefit you financially,as you are a workaholic you are bound to succeed,good luck.

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