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Financial support/benefits for new secondaries dx

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Re: Financial support/benefits for new secondaries dx

Hi

Has any ladies had any experience going from DLA to PIP?
Xx

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Re: Financial support/benefits for new secondaries dx

 

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Re: Financial support/benefits for new secondaries dx

Some interesting points here. I've been in receipt of DLA - lower rate for help with care component - for some 15 years and it has been granted for life. This has been for a completely different condition, nothing to do with BC. When I enquired a while back, I was told that I could re-apply for a higher rate if my needs have changed irrespective of any new dx. However, despite the mets, I still need the same sort of care I had years ago, nothing has really changed, so I am not entitled to any more then I am getting at present. My oncologist thinks that my life expectancy is more than 6 months, so the DS5100 is not an option at the moment - good in some ways.

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Re: Financial support/benefits for new secondaries dx

ive looked around for support if i have to take time off work when i get my results ....to have my treatment i havent found a lot ....... stressed and this makes things so much worse.....
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Re: Financial support/benefits for new secondaries dx

thank u for posting been will be a great help ......
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Re: Financial support/benefits for new secondaries dx

DLA seems to have become a lottery.When I applied I filled out the full,long form as I could not bring myself to apply via DS1500.It took me ages to fill it out,sent them a copy of every letter,diognosis,prescription,scan result I had and after many requests for further information I was granted DLA indefinately.I recently received a letter from them saying they would not review until April 2015 and if I am 65 by then that it will continue indefinately (I will be 65 in may 2015). It is so hard for us to deal with the damn disease without having to fight the system as well.
hope you all get things sorted and DLA granted.

L xx

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Community Champion

Re: Financial support/benefits for new secondaries dx

Hi
I had my renewal come through in November last year and, as I had been stable for more than 4 years with bone mets, I felt I couldn't ask my GP to sign a new DS1500 for me as there was no reason to assume I only had 6 months to live. I had accepted that if this situation had remained the same i would not be able to claim DLA once my renewal was due. However I was experiencing some hip/leg pain at the time and this was being investigated. I filled in the initial form from DWP and they wrote back needing more info, this was then the full claim form. I completed this plus a long letter describing my situation, plus other medical problems (brought on by chemo) that affect me but had my DLA refused. At this point I was confirmed as having further spread to my bones and unfortunately liver so I did go to my GP and he agreed to sign the form, still a bit reluctantly but at this point who can tell what is happening with my mets. After submitting the form to DWP, who needed more info from me as I'd lodged a reconsideration, my DLA was re instated and the weeks I'd missed since they had stopped it were also paid. I agree with Nina that its no longer a 'given' that you will get a DS1500 signed, depending on your own circumstances. However if you are experiencing mobility problems you can fill the form in with that information and they will review it under normal rules. Very tough for us, who live with mets every day and how it affects us mentally and physically, but the advisor I spoke to on a number of occasions didn't take any of this into consideration when looking at my circumstances!
Nicky x
ps great to see you posting Julie, hope all is well with you.

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Re: Financial support/benefits for new secondaries dx

I am more than aware that a lot of decision makers are questioning the use of DS1500's, particularly for just bone mets.
However the 6month thing is one of reaonableness and so is open to interpretation. A few oncologists interpret it as being ;that death cannot 'reasonably' be expected in 6 months( if your condition stays the same) .
However another interpretation is that once you have secondary bc, particularly in the major organs, there is no clear way of indicating life span (response to treatment etc). We all know that responses to treatment can change as can the pathology of our tumours. They do vary so much in terms of aggressiveness etc. Therefore for some people it is not 'unreasonable' that life expectancy could be 6 months ( hopefully more).

I have had my special rules DLA renewed and at times I have felt guilty. However I know that I will not be around to claim my state pension. I have worked all my life, what will happen to those contributions ? Also because of DLA i have been able to cut my hours and carry on working rather than claim sickness benefits. Without my motability car I could not get to work in the first place as public transport would be too painful and too much.

Julie

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Re: Financial support/benefits for new secondaries dx

I think the DS1500 process is being looked at a little more rigidly than in th epast, and medics are being challenged on their reasons for signing more. It's intended for people with less than 6 months to live - you've had 6 years, so if you look at it objectively it's questionable as to whether it's applicable. I suspect your onc doesn't think you're likely to die in the next 6 months and thats his reason for not signing.
After what I'd read here, I asked about DS1500 when I got my bone sec dx, and was flatly refused. In some ways I was gutted but in others happy cos she hoinestly thought I'd mor ethan 6 months - and given it was 20 months ago she's right.

Whereas it used to be standard - and still is with some medics - to say sec dx = DS1500 signable, it seems it';s less 'easy' than it was. By all means pursue, and good luck - but don't get your hopes up too high.

Nina

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Re: Financial support/benefits for new secondaries dx

Jackie, I got my doctor to sign mine and she did it no questions asked, might be worth asking your doc. xxx

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Re: Financial support/benefits for new secondaries dx

Thanks Dawn, Ive wrote a letter to my onc to find out why he wont sign the form, my BC nurse is also going to have a word so fingers creossed
Take Care Jackiex

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Re: Financial support/benefits for new secondaries dx

Jackie do you have a BCN you can discuss this with. If so she may be able to have a word with the consultant. If not do you have a macmillan contact who might be willing to sign it for you or to liaise with your consultant.I certainly wouldn't give up yet or go down the claim route without the DS1500.

Dawn
xx

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Re: Financial support/benefits for new secondaries dx

Hi Ladies
Ive been claiming DLA with a DS1500 since 2007, I have liver mets.
My onc has signed 2 previous DS1500 no problem, my DLA is up for renewal in June and this time my onc has refused to sign my DS1500 with no reson given.
i have a motability car and this will have to be returned as without the DS1500 I dont think I will get the higher mobility rate.
I am really confused to why he wont sign it this time as nothing has changed since the last renewal.
Can anybody give me any ideas on what to do next, I really need my car and the £77 I get each week
Many Thanks
Jackie

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Re: Financial support/benefits for new secondaries dx

Donnad

My meeting went really well in my favour .
hopefully my company are going to offer me a pay out instead of my taking them to court

I will let you k ow how it goes

Hope you are well ??
Love Rosie xxx

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Re: Financial support/benefits for new secondaries dx

Hi,
I am sorry but have had problems with memory and forgot to respond - I wish there was still the alert given when a post is made here or am I missing something since the site changed?

My December upper body scan showed good results and Onc was pleased.
2 weeks later I started with prickly sensation and numbness all over most of body (another thread)- more tests and bone scan - all good - yippee

Seem to be gaining a little energy so prob should have given myself more recoup time pre xmas.

Have shelved retirement plans for time being and want to be as fit as poss for as long as poss!

Rosie - how did your meeting go? I hope you are nearer a solution.

Donna

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Re: Financial support/benefits for new secondaries dx

Hi, I'm still fighting my case for DLA renewal but I understand those with a DS 1500 will have that considered when PIP is introduced. Not sure how much though as they totally ignored my original one when my renewal came up. I didn't go the DS 1500 route for the renewal as I felt my bone mets had been stable for so long it wouldn't be right to get my GP to sign one at the time, but it's been a nightmare to date - even though they knew I was having scans for symptoms I'd associated with bone mets, grrrrr, they didn't wait for the results just took it all away. I'm also looking at ESA as I have had to stop work whilst on Xeloda, at least for now, and am going the contributions route as my NI contributions are up to date.
Nicky

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Re: Financial support/benefits for new secondaries dx

Hello eveveryone
I'm very new to your site and still finding my way around. I was wondering if anyone knows if us ladies with secondaries are going to be entititled to the new PIP benefit once DLA is scrapped, if I lose this money I'm not sure how I will survive.

Any insight will be greatly appreciated - Kirsti xx
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Re: Financial support/benefits for new secondaries dx

Hello ladies

I haven't been on the forums for months and months, but I came across this information today, which I thought others would be interested to know about.

At the end of January new regulations came into force regarding Employment and Support Allowance (ESA), whereby (so it reads) all people with cancer are eligible for the Support Group of ESA, whereas before some people were eligible for the Support Group, but others were put into the Work Related Activity Group.

However, the press release is a bit ambiguous, as in one place it refers to people 'awaiting, receiving or recovering from any form of chemotherapy or radiotherapy', but elsewhere it says 'all types of cancer treatment are seen as having the potential to be equally as debilitating' (ie not just chemo or radiotherapy).

It looks as though the ESA form will be amended so that people with cancer won't have to complete the whole form and their applications will be processed more sensitively than in the past, and more importantly, they will be placed in the Support Group rather than the Work Related Activity Group.

For anyone who's interested, here's the link to the press release from DWP:

http://www.dwp.gov.uk/newsroom/press-releases/2013/jan-2013/dwp014-13.shtml

Best wishes,
Alison

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Re: Financial support/benefits for new secondaries dx

Hi thanks nina think I have finally sussed it. But for how long the clarity lasts I don't know haha Pauline x
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Re: Financial support/benefits for new secondaries dx

Hi again Fran,



I don't think the changes you refer to apply to DLA claims with DS1500. The way I went about it was to first ask my onc about the DS1500. Once I had their agreement to this I phoned the helpline no. for DLA and they date your claim from the day they send out the forms. (I remember when I did this that it stated 11 weeks from that date you would hear from them.) Those are the ones you will need help filling in because you do not have to complete them all with the DS1500. I remember when I did this that it stated 11 weeks from that date you would hear from them. I think it becomes even easier if you have a macmillan nurse because they can do the DS1500 and help you with all the form filling. So much depends on the co-operation of those you are seeking help from. They can make it so much easier for you.



Dawn

xx

edit: LOL I have just realised why this post is out of place (and will possibly move again for me typing this!) I should have remembered that if you edit an old post it will move to the date/time you editted. So apologies to Nina, Moderator and anyone else I have managed to confuse. I was flicking through posts earlier on and had spotted an error in one and decided to edit it - shouldn't be so fussy should I :).
Dawn xx

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Re: Financial support/benefits for new secondaries dx

Nina I am just looking at the post I have supposedly made and am completely puzzled - I didn't post it - unless I did it in my sleep. I have just been sitting in my chair falling aslelep with laptop in front of me and not made any posts.
MODERATOR have you any way of checking how this has happened?

Dawn

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Re: Financial support/benefits for new secondaries dx

This wil be fun - 2 of us chemo brained!! The only way I know of getting your car tax paid is to be receiving DLA higher mobilty allowance. So if I'm right then you are getting that, then you can get a motabilty car.
Think Dawn may be chemo brained tonight - sounds like she's replied to a different related post here!! She certainly confused the hell out of me! I may have sinned there - Hell may be a four letter word and enrage the BCC language police in which case apologies in advance

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Re: Financial support/benefits for new secondaries dx

lanii to get a mobility car you need to be getting the higher rate of mobilty allowance of the Disability Living Allowance.If you do get you have to give up part of your allowance to cover the cost of leasing the car.If you don't get DLA then you should apply for it.Please ask if you need any more info on that.

L xx

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Re: Financial support/benefits for new secondaries dx

Thanks broomsticklady. I think I'm being thick which I usually am these days (the dreaded chemo brain) but I think I only claim for car tax. what part of allowance is mobility? x
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Re: Financial support/benefits for new secondaries dx

As far as I am aware, if you're having your car tax paid you must be getting higher rate mobiilty. If this is the case then you can sacrifice your mobilty allowance and take a motabilty car no problem. Go into a dealer for your chosen car and talk to them - they'll be only too happy to help and will know excactly what to do. You may have to contribute some extra if it's above a certain level price wsie - don't know what this is and not seen it published - that's where dealer will help. Nina

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Re: Financial support/benefits for new secondaries dx

Hi can anyone advise me if I am entitled to a motorbility car. I am in the support group of the disability living allowance. I have a blue card which enables me to have my car tax paid. I always thought i wasn't eligible. thanks x
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Re: Financial support/benefits for new secondaries dx

how did scan go ?


hugs RosieRosie

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Re: Financial support/benefits for new secondaries dx

Hi again,
Scan date is for Wed 12th so a date to focus on now. Then will put in my application!
Donna

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Re: Financial support/benefits for new secondaries dx

Hi,
I wish you all the best with your meeting on 17th Rosie. I hope something can be sorted out for you that is acceptable for your needs. I'll have my fingers crossed for you.
A chat with a friend at work has made me consider being ready for a few outcomes since it is all so confusing. I think I'll wait for my scan results then take advice, as Nina suggested, from an independant fanance person. I'm sure I want to reduce my hours soon but I do like my job. I need to find out if there's any way of protecting what little pension fund I have so that when I feel I need to stop work I haven't reduced my funds too much. If that isn't an option then I'll probably go for full retirement application and see how that goes.
I'm still waiting for a scan date requested a week ago then at least there'll be a date to focus on.
Donna x

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Re: Financial support/benefits for new secondaries dx

Hi
Have a meeting now with my work now on 19 th December -still hoping for retirement on ill health grounds.
I could not imagine going back to work and stress as well.
Hoping we both get the right outcome. Will let you know how it all goes.

Love Rosie xx

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Re: Financial support/benefits for new secondaries dx

I posted in a financial thread a couple of months back about not automatically taking a company pension when you have major health issues. An IFA can point you to a reduced life pension and for me even with final salary from big bank the alternative was far better - look into this before you commit to your company pension.
Nina

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Re: Financial support/benefits for new secondaries dx

Hi Rosie,
Thanks for your message.
I have had conflicting responses from 2 contacts at my pension fund. A contact made by phone said if I requested reduced hours under ill health grounds then my pension would be protected as if I were still doing my current hours. Another contact by email says its either reduced hours application or an ill health retirement application.
Because I am still up and about albeit with less energy and a lot more aches and pains I'm put off appliying for ill health retirement just yet as I think it just possible I may not fall into the correct 'slot' (ie - not ill enough yet) with the independant medical review. I wish I had an idea how they make a decision.
Good luck with your application. My union were hopeless when I rang them so I won't be bothering them again.
I think I will try the Macmillan contact as you suggest as they have been very helpful in the past.
Thanks again
Donna

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Re: Financial support/benefits for new secondaries dx

Hi Donnad
I have just applied for early retirment on the grounds of ill health - I have secondaires in my lung as well.

I have asked my trade union to sort out for me as I am lost with employement law and what I can apply for and how to go about it .
A letter has been sent to my company asking for early retirement and I am awaiting a reply from them via my union.
On the down side my company have not supported me in any way and have had no contact with me for 7 months.
So will really not be sad to leave at all .
Hope you got get some help - Macmillian offer help with things like this . They helped me with my DLA claim .
When I get an reply I will let you know the outcome.
Love rosie chin xxx

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Re: Financial support/benefits for new secondaries dx

Hello all,
I'm quite new to posting so I hope this works.
I was wondering whether anybody had posted about applications they may have made for early retirement on ill health grounds and how they got on? I am a member of the Cheshire pension fund.
I was diagnosed with secondaries in lungs and liver early last year, have had more chemo and have been back at full time work since June. I can tell my stamina is much lower than is was a couple of years ago and am beginning to wonder how ill you have to be before qualifying. Part-time work may be an option but could that change things for a later application?
Enquiries I have made have given baffling responses so any input would be appreciated.
Donna

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Re: Financial support/benefits for new secondaries dx

Hi kaz1960

I’m sorry to hear that you are having a pretty tough time at the moment. If you need some extra support or just to talk things through do give the BCC helpline a call on 0808 800 6000. Here you can share your feelings and concerns with a member of our helpline staff, who are there to offer emotional support as well as practical information. The lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes Sam, BCC Facilitator

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Re: Financial support/benefits for new secondaries dx

Hello everyone
Been diagnosed with secondaries in lymph nodes in arm, neck and chest wall, also some small spots in lungs. Had 1st chemo 3 weeks ago and was due second lot on monday. Didnt happen as levels were too low for them to do it. When I 1st was diagnosed with bc in 2009 didnt realise the help available so didnt ask for it. However, this time feeling like c**p and am amazed at help available. Asked onc for prognosis letter to claim DLA but she was not keen on giving this to me but said that she would do a letter (not sure what that means but was too scared to ask why she wouldnt give it to me!). Onc has said that she would get mac support person to contact me, which she has done and i hope to meet her on friday. When i was diagnosed with secondaries i felt like this was not happening to me, it felt like a dream, all be it a bad dream! Took me weeks to come to terms with the fact that i could die so soon. Sorry to go on but although ive got a supporting family i dont feel like i can burden them with my feelings as they are trying to come to terms with my diagnosis themselves.
Hope u all keep well. x

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Re: Financial support/benefits for new secondaries dx

Thanks Moondog, will try my oncologist then

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Re: Financial support/benefits for new secondaries dx

Hi Jo, my oncologist signed mine.
Moondog

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Re: Financial support/benefits for new secondaries dx

Hi all, was wondering if anyone has some advise for me, I have been diagnosed with secondary bc about a month ago, in bones, my doctor will not sign me for the DS1500 as she said its not appropriate for me as its only for people who have a life expectancy for a maxium of 6months and she doesnt think I fall into that catogory.
Can I ask my oncologist or does it have to be your doctor?

Thanks

Jo

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Re: Financial support/benefits for new secondaries dx

Hi everyone, I'm 59 and my partner took out the ASDA over 50s plan for us a few years ago. Like lucinda we took it because it only had to be paid for a year before we were entitled to the full sum payable on death. Takes the worry out of things a bit.
xx

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Re: Financial support/benefits for new secondaries dx

I took mine out at ASDA.I took this one because it only had to be paid for a year before eliigable payout.It is an LV policy but for some strange reason it paid out a bigger sum via ASDA.Also got an ASDA gift voucher.
You need to compare which one works best for you on age.Some also allow to cap the number of years you pay in.As geewizz says you have to remember these plans have no value other than payout on death , so you need to keep up payments otherwise you lose everything you have paid in.

L xx

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Re: Financial support/benefits for new secondaries dx

If you google "Over 50s life insurance" you will find loads, including LV, the Post Office and Asda. We went with Sun Alliance. You choose the level of cover, with premiums starting at around £4-£5 per month. I think the limit for payout is £20,000, but the premium needed to achieve this would obviously vary depending on your age. Do remember though that these policies only pay out on death, and if you decide to stop the plan beforehand, you will get nothing back.
Jx

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Re: Financial support/benefits for new secondaries dx

Hi

Which company have you managed to get life insurance with and was it really expensive
Thanks
Norma x
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Re: Financial support/benefits for new secondaries dx

Yes! I'm 52, with bone mets to femurs, hips, pelvis, spine, ribs, neck, skull...

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Re: Financial support/benefits for new secondaries dx

Wow, So even if on paper, you are a mets-riddled crock like me (although bouncing around in real life), I could still take out a policy??? (I'm 50)

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Re: Financial support/benefits for new secondaries dx

Hi Pam,

Sorry you have had no feedback on your posting. I fully agree, and in fact we took out one of these policies at the end of last year. On ours, the large payout doesn't come into effect until after 2 years, but even if I am unfortunate and die within that time frame, my husband would get all our premiums back plus 50%.

Jx

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Re: Financial support/benefits for new secondaries dx

Hi everyone, just a thought which I hope doesn't upset anyone. If you are over 50 (and the nearer to fifty the better ) have you thought about taking out over fifty life insurance if you have kids or others a small lump sum would help? for most people this is poor value I think but for those of us with limited life expectancy it may be very good value. Some pay out after paying premiums after one year (eg ASDA/LV) others after two years. If you die before this all premiums paid are returned. You do not have to get any reports or make any statements re your health (except some ask re smoking status.) May be worth picking up a leaflet in one of the supermarkets or having a look online. Pamx

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Re: Financial support/benefits for new secondaries dx

Jacqui
If you can track down a MacMillan welfare rights person they are worth their weight in gold with the knowledge they have. I had a brillian one but unfortunately she was made redundant in March and now all new cancer patients have to be referred to the Citizen's Advice Bureau (WTF!!!)
I got DLA at the higher level following diagnosis last year but I have liver, brain, bone, lung and lymph mets. I think women with bone mets only maybe struggle more because their prognosis is generally better but that's not a hard and fast rule and is obviously done on an individual basis.
I'm 50 and am curently working as a nurse in a job share which I manage at the moment.

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Re: Financial support/benefits for new secondaries dx

Hi
there is lots of useful advice here, but there is alot, and I am still unsure whether I should be able to claim any benefits. I had accepted an early retirement/redundancy package last March and my last day of work was 22 Dec. I had another job to go to as a nursing assistant, but on 21 Dec got my secondary diagnosis. I then failed the occupational health assessment for my new job as the movement of my arm was severly restricted. I have managed to get ten hours a week working from home, and have my little pension of about 3k per year. But I am finding it hard to find a full time job and I am only 51 so not really ready to give up work. However at the moment I am quite tired in the late afternoons.
I don't feel disabled though. Especially as I am having a lot less pain since my tumour seems to have shrunk away and the hole in my shoulder bone is closing up. My activities aren't really restricted though treatment at the moment seems to make me more tired than usual.
Can you claim these things just by virtue of having a secondary diagnosis regardless of the level of disability? I think it is because of the cancer and treatment that I am not really getting interviews.

Thank you

Jacqui

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Re: Financial support/benefits for new secondaries dx

Thanks all for your advice - I sent off the form, but they haven't got it yet. Spoke to Macmillan advice line on benefits today and they were extremely helpful saying I shouldnt have had to fill in the form and should receive it. I have to give it a few days and then chase it up again later on in the week. It's been since the 27th March - so much for fast tracking! X