This topic contains 41 replies, has 17 voices, and was last updated by 
jorge 11 years, 7 months ago.
Hi All
I was going to try again to apply for DLA so I phoned my Dr's Office to ask if he would give me a form to say that I have MM and its a Terminal Illness 🙁 got a phone call today from the Cancer Nurse and was told I dont qualify :-S . I was told that I need to be near unable to walk/Cook and or clean myself or only have 6 months to live :-0
I told Her that in Jan 2009 I was told I had an expected Life span of 5 years and its now 2013, I added not that am giving up but its getting to near four and a half years since i was told so must be eligible for it?.
Turns out I have to be near Death before i can get it (am not supposed to be enjoying it??)
Would Love to hear your thoughts
Tom Onwards and Upwards X
That's shocking really isn't it.
I considered taking early retirement as someone with a terminal disease but looking at my pension to qualify for 'sick pension' you practically have to be dead. It's the Teachers Pension Scheme and the medical assessments are done by ATOS. Don't laugh.
The other Tom
Hi Tom,
Phil and I had similar problems when he was initially diagnosed and we tried to apply for benefits. Phil had taken voluntary redundancy from work and we were set to move to Devon. Two weeks after Phil finished work he got the diagnosis of MM so we cancelled our move and stayed in London. We found that Phil did not qualify for most benefits including a blue badge as he was too mobile. We also did not qualify for some benefits because I work too many hours so I could not get any carer's allowance. For other benefits like the Attendance Allowance we are too young to qualify. Phil ending up getting the Employment and Support Allowance but even that was a struggle, we were initially told he would not qualify due to his work pension, it took a phone call from me pointing out that Phil was not due to be able to collect his pension for another twenty years for the government to agree not to count that as income!!!
The benefits system is very confusing and nothing is made easy for you. The Disability Living Allowance seems to have very strict criteria and the need for a medical assessment to qualify. I am not sure how the government decide when an illness is classified as terminal?? I would assume that as you are still working Tom you would find it hard to qualify on the mobility/needing help with care side of it?
It doesn't hurt to try and get everything you are entitled to but it seems that what you are entitled to is often not very much! :-/
Megan
Hi Tom,
My local cancer support centre directed me to the Citizens Advice people. They helped fill out the forms for me. The forms are pretty complicated (to me anyway) and I couldn't have done it without their help. My suggestion is go to them for help. I didn't have a clue what I was entitled to and they sorted everything out for me.
Good luck
Scott
Hi folks
Thanks for input , yes Tom you have to be near dead before you get anything. I am of an age (57) that I can draw my frozen pension and if I pack in work can claim the one I pay for now, but my frozen one gives me next to nothing BUT if
I pass away before I reach Retirement age it pays my estate £29 K 😀 so am gonna leave it and see what happens.
Megan I have my blue badge and bus pass and am still a young un ha ha,
Yes I am still at work ( light duties) still 6am start and 2pm finish Mon to Fri and to be fair come weds am ready for the weekend,so was looking at things to bring some money to the home ?
Scott I had help in 2009 in filling the forms just after I had my SCT and at that time
I had a struggle to walk and prepare food but still failed the criteria, lord knows we have Terminal Cancer and struggle to get a bean hey ho Onwards and Upwards.
Tom
Tom,
A 6am start doesn't sound very much like light duties to me!! 😀 It is very frustrating having to worry about money on top of dealing with Myeloma, isn't it?
Megan
A lot of people get confused between a terminal illness and disability. You can have a terminal illness and not be disabled and of course vies versa.
To qualify for Attendance Allowance you need to be a Pensioner. i.e. over 65. Disability Living Allowance is for those of working age.
Put quite simply to qualify you MUST NEED someone to look after you virtually full time. Again being simplistic; if you can dig the garden, walk the dog, cook your own meals, go to the toilet without assistance, take your medicine without forgetting, get dressed by yourself you do not qualify for either allowance.
I worked as a voluntary Case Worker for 10 years with Soldiers, Sailors and Air Force Families Association (SSAFA) and I would always recommend you go to CAB or Macmillan to fill in the forms. The words you put down are very, very important
Kindest regards ? Vasbyte
David
Hi Tom,
I was advised by a MacMillan nurse to apply for DLA because of my limited mobility and extensive bone damage. I put in for it expecting to get the lower rate but they gave me the higher rate and a nice new car.8-)
From what I can tell the DLA is mostly a mobility based allowance… if you qualify they give you the full allowance but there is a lower allowance which is granted to those mobility is affected either by disability or illness… such as MM.:-|
I would like to say it ain't so but I can no longer put on a pair of socks or lace up shoes and while I can dress myself it can take a long time with some Dex like sound effects. Once I am dressed and sitting in a chair I look a picture of health. 😀
Dai.
Hi Tom
I do not know what you situation is Tom,Dai is right in what he says about the physical side of claiming,but they can not discriminate between physical and the mental ability of the person although they have tried for years,because they do not like paying for a person,eg with early dementia or mental issues.
Tom as you say your frozen of 29k would be handy for your wife but which would she prefer, £125 a month now and a less exhausted husband or£ 29 to spend when your dead !!! She will get her pension topped up when you die any way Tom !!!
My advice is you are allowed to take about 8 thousand tax free from your frozen pension (check this ) ,this leaves you with about 100£ a month. Why not go to your doctors and tell him the hours you work 6am To 2 pm,and say your body can no longer carry on,ask for time off to recover ,you will have to put a claim in,and most properly have to appeal,you should at least get the smaller amount,you do need an expert to fill in the forms,you wife might be entitled to careers allowance,you can tell on here,she does a lot for you.
It might be hard to manage at first,but may be you could go part time,instead of unsociable hours.
You have to get your employer,doctor on board,find someone to fill in the form,to put it bluntly,you have not got a hope in hell to work until you are 67.even I can see that Tom,sorry to be so brutal .
With age comes knowledge ,and the one thing I have learned,is all the money in the world means nothing if you do not have your health.I wish you good health Love Eve.
Hi Folks Thanks for your Inputs 😀
David
Yes I can and do most of those But I dont do the Garden as much as My Body tells me its too much, cook clean and do a fair bit of dog walking as am sure thats what keeps me Mobil and less bone pain 😀
Dai
Yes the DLA is as I have found out More for Mobility, and from what I gather you need to be in a bad way to get it?. and am pleased to say I aint Bad if fact to be fair I dont look like I have anything wrong with me 😀 now is that good Or Bad Lol:-S
Eve
I said leave it to my estate and am sure that will include my young bride, but nothing down in stone lol 😛
My physical and the mental ability is pretty Good To be fair, dont get me wrong I wont be doing no running again just small wanders from now on Lol.
And Eve you are correct am sure i wont make 67 and they should give the likes of me my pension early Lol.
Thanks for all your Inputs
And as Normal service is resumed so Onwards and upwards (well at 6 am in morning lol
Tom Onwards and upwards x
Hi Tom,
As everyone has said DLA can be given to us MM sufferers to aid our mobility and care needs, I too on the outside look normal and when sitting in the car can be taken for person with normal mobility, however it only has to be a little too cold and my back aches with pain, also I can walk but only short distances then my back aches so I am more often found sitting on seats with the elderly ! I am only 54 years old.
I cannot do normal housework, to empty the dishwasher takes me 4 seperate attempts, normal hand washing up also takes me seperate attempts with me having to sit and rest up after just few minutes of standing at the sink! I like Dai can now dress myself but am shattered after doing this but I cannot put on my own socks or tie my shoelaces or zip up my boots, my husband has also had to learn how to help me put on tights!!!
When shopping we always use a trolley as this helps me walk farther, but I cannot pack the bags or put the bags into the boot of the car, different parts of the house/kitchen are now out of my reach as I cannot bend down and am now too short (as now 3 inches shorter myself due to my bone damaage caused by the myeloma ) to reach high shelves.
I cannot make the bed and even do light dusting will give me severe back pain,I can iron at most 5 items but then am in agony, also cannot take anything out of the oven or lift pans off the hob, I have now learnt to rest and how to ease it, but sitting too long also not good!!!!
My consultant told my employer that due to my bone dammage I will never be able to work again!!!Luckily ATOS listened to him and so I was able to take my company pension early and we talked for great length of time but my husband and I decided to take larger lump sum now and smaller pension so we would have funds to make the most of our time left together. My husband is now my full time carer and receives carers allowance which is most pitiful amount for what he does but gives us quality time together, we have learnt to manage on what is now less than half out joint working earnings, bad health like we all have is very hard to manage but we have no choice do we, My husband often talks of finding part time work but it needs to be flexible as one day I can drive and the next day I cannot, also need him to take me to hospital appointments which continue to be regular. If I did not have my husband to help me I would have to employ a cleaner and have meals delivered to me or employ a full time housekeeper!
I attend my local hospice for support and they help me to do arts I had not thought I could do,offer relaxation classes, complementary treatments and soooo much more, hospices are not only for the near to death as most people think, your local GP/Dr just needs to completed the consent form to enable you to apply for their help.
We have so much which should help us , the hard thing is actually knowing where to start!
Good luck Tom,
Love Babs
Hi Tom,
You really are a total hero for working those hours! I am not a morning person and have often been known to turn up late for 10am team meetings, even before MM. I hope you do consider taking some of your pension early or going part-time, even though the benefits system is so ill-suited to the situation you're in. You deserve a rest!! But I realise it's a personal choice and everyone is different and has their own circumstances.
It was really helpful for me to read all of this. It's not something which affects me right now as I was lucky in having 6 months on full pay and then 2 months on half pay, and now I'm back at work. I have spent a lot less while being ill, so for now I don't have any problems. The issue is more the future… I'm mainly being a bit of an ostrich about it but I'm not sure how to approach financial decisions now. My pension is a very far-off prospect as I'm only 33. Obviously I hope I'll stay well as long as possible, and be able to get by on periods of sick pay and maybe working part-time during any future treatment (every 2 years I'm entitled to sick pay again, at least on current rules although they are gradually eroding the civil service terms and conditions so it wouldn't be 6 months in future).
I guess my question is, is there anything sensible I can do to prepare for the future? A stupid question I presume, but once you have myeloma I guess there's no type of insurance you can take out? I have a shared ownership flat (part-rent, part-mortgage, one of these first-time buyer schemes) but I never took out any kind of insurance on my mortgage. Is there a risk ever that if I wasn't earning any more I wouldn't be able to get a new mortgage deal? Otherwise I guess the only approach is (when I no longer had pay) a combination of switching to an interest-only mortgage, getting whatever is possible on benefits, and then relying on family help.
In the meantime, it's a bit hard to know how to strike a balance between 'carpe diem', 'sod money', doing lots of nice things and having holidays, or worrying about the future and trying to squirrel money away for a future rainy day. I don't have much in savings at all – I had none at all before being ill as I was finishing paying off a loan, although I've now paid that off and built up a small amount of savings. I know that some benefits are means-tested, does anyone know what kind of savings you are allowed to have without losing the possibility of benefits?
The hard thing obviously is you have no idea how long your remissions are going to be, what great new treatments will come along that turn this into a chronic disease (let's hope!!) etc. If I knew it were going to be a very short time I think I'd just spend away and not think about it (!) but then again I'd like to think I'll be one of the lucky ones around for decades… in which case I'd be inclined to be very careful with money.
Anyway, I don't know if anyone is in a similar boat or has come up with any answers, but any thoughts or advice very welcome!!
Helen
Dear Helen
I'm a lot further along the work road than you so the pension situation is very different, but I'm back to work full time, I could retire on ill health grounds but this would mean reducing our income – as i had time off when the children were little my pension will not be great and as my husband is still working, I'm going to work until I can't. I too don't qualify for any benefits as I'm only tired and that doesn't count. If you do have to finish work on ill health grounds you will get employment support allowance and depending on mobility, from April the new personal independence provision. I thought all mortgages had an insurance element so that's worth checking too. I do think its worth finding out as much as possible about what is out there, especially as we have no idea which direction the disease takes us.
Love Helen
Hi Babs
Yes it looks a minefield to try and get something. Trouble is I am fortunate enough to be fit (ish) but to be fair I am tired and get a wee bit weary at times? but hey ho Onwards and upwards.
As for using a trolly when shopping I love to take the grandkids as i can push the trolly and love to take them for a walk with the dog cos i can lean on the pushchair helps my back also.
Yes am sure we can manage if I packed job in but its me and the "I aint Ill" Syndrome and am sure I know that wont help me in the long run.
Helen
Well I aint no hero ha ha
Yes i start work at 6am but am awake at 4 (ish) every morning even on sat and sun (days off) so early start isnt a problem ????? lol
It is a personal choice but its a male thing i think I need to go and clock on for work 😀 but the DLA was going to be a tester if i got it i would pack in work. but as thats not gonna happen it looks like roll on summer sun lol.
Your Q as what to do to prepare for the future?:::: Well Elaine (the young bride) was diagnosed with Breast Cancer in 2008 and prior to that we were setting ourselfs up for Retirement, our plan was to sell the house and move to spain (country) and the age we had planned was two year ago 🙁 we had a bit of savings and with selling the home we could (as we seen it) manage BUT Elaine getting Breast Cancer and having the treatment we started to spend our money, More Holidays abroad (we went in between Elaines Treatment four times in one year 08) more nites out for meals, Then in 2009 I was told I had MM so it started again spend spend and more spend till it all had near gone. do I have any regret in doing that? Not one bit would i do the same again Too true i would.
And Helen as for your Home well we have been in our little home for near 26 years just over and we are putting it on the market and going to try and rent a Council Flat/Bungalow it then leaves us Money to live on and have fun 😀 personal thing but am sure it will work for us for many many a year to come.
Many Thanks to you all for your replies.
Love Tom Onwards and Upwards xx
Hi Tom
We have it in for shelted accommodation as we decided the same thing,Slim surprised me,as it was his surges ten ,we found the council did not want to know own you own property you do not get many points,so the more you have worked and looked after yourself the less you get, a friend suggested Sanctury Housing,they do not mind if you own a property,as long as there is a good reason for you applying and I think you have that,look on the computer see if there is anything in your area.
We have just been accepted to be put on the list for alms housing,one of the main reasons for doing this is,last time when Slim was so ill I managed but it was hard,and we live in a flat on the ground floor how people manage with stairs I do not know.all my floors were changed to wooded floors,we have a cleaner for 2 hours as slim can no longer do heavy stuff,walking the dog in this bitter cold is hard work takes him ages ti get warmed up again,and we fight over who is carrying. The shopping,as my back has always been weak,plus I
now have a frozen shoulder,but I do worry hs back will break again because the whole spine was effected with Myeloma
I think people often leave it to late in making these decision ,you need to think how will I be in 5 years.
I took my small pension early had about 8 thousand tax free,and I get about £28 a week.you will be amazed how far it goes.
Good luck with your decision Tom.
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