Financial support/benefits for new secondaries dx

So many of us here have been granted DLA, but so many others will be struggling to access state benefits & services during this Government’s “austerity” administration, especially if the Welfare Benefits Review goes through Parliament.

Here’s a new report written, funded and distributed by sick & disabled people throughout the UK challenging the Government’s disability reforms: bit.ly/A3fiLH. You might like to have a look at it, and then let your MP know how we will struggle if the Government’s plans are approved.

None of us expected to become sick or disabled, did we . . .

Thanks for bringing this up though I can’t get link to work, probably my lack of computer wizardry but can you put link on again just in case.Thanks!

Marif, I tried your link yesterday and couldn’t get it either. Julie I thought it was just my lack of skills too so you are not alone!
I went to a meeting for ladies with Secondary Breast Cancer at my local hospital and next month someone has been invited along to talk about benefits etc. Will let you know if I learn anything new.
I am not pleased about the recent info and talk about breast implants. I have been following another thread where many hospitals in GB have said they have NOT used the problem implants in their hospital. But it is the way things have been dealt with by the media and the departments themselves that worries me. My implant has been in place for over 20 years and I have asked my Consultant many times if it is still ok and she said yes. I will just have to continue putting my faith into her as I have always done. LOve Val

Hi - so sorry, but I think there have been a lot of problems with the link to the “Responsible Reform” report - here’s another link that has just worked for me: skydrive.live.com/view.aspx/Responsible%20Reform%20for%20screen%20readers.doc?cid=cba86408918caa9e

The last thing we need to worry about is the Government cutting our benefits & services after failing to note our concerns, but that is what this report has uncovered. Its findings have received support from all the major health-related charities in the UK, as well as doctors’ & nurses’ organisations, politicians and well-known celebrities. Please have a read of it, and ask your MP to read it as well before they consider the Welfare Reform Bill.

xx

Hi Ladies,

Received a letter today regarding my claim for DLA and the renewal, I was awarded DLA back in May last year after 5 months of waiting, my award was for 1 year and runs out in June this year. Since then I have been through chemo, surgery and rads and am permanently on tamoxifen and herceptin or for as long as they both seem to be working (fingers and toes crossed) I have secondaries on my lungs and was dx with both primary and secondaries from the start back at the end of feb last year, since having all the treatments and surgery I am now without a right breast and lymph nodes in the affected armpit the shoulder of which causes me a great deal of pain and I remember the lady that did the initial biopsy could see on the screen saying that I had arthritis in that shoulder, I get backache constantly and my breathing is affected can be quite scary at times gasping for breath, when I first applied my Dr filed in the DS1500 form however the DLA told me they would award me the DLA for a year without taking the DS1500 into consideration because and I quote “we do not believe the DS1500 is appropriate at this time” !!!

My question is should I get my Dr to fill in another of those DS1500 forms? and if not has anybody else with secondaries been awarded DLA without DS1500, also they mention something about doing home visits!!! whats that all about??? checking to see if I’m really sick!! The lady on this forum that told me about applying for DLA who had the same dx as myself has sadly passed away, I truly don’t want to be worrying about this but can feel I am going to get stressed out as if I haven’t got enough to be stressed out about without the benefits starting to question me. I rely on the DLA money so much I was self employed before all of this started and have not been able to face working yet still adjusting to being sick, spend most of my time emotionally fraught and physically unable.

Any advice greatly appreciated
Love to all
sarahlousie xxx

Hi Sarah Louise, I get DLA without a DS1500 being filled in. I get it at the higher rate. I just filled it in and got the award without Dr being involved. I too have lung secondaries and bone. I was awarded it for three years before a review. I hope this helps de stress you!!

Sadie Xx Xx

hi Sarah Louise
I got higher rate DLA for 3 years without DS1500.I did fill out the whole form,answered every question in great detail and then asked them to write to my oncologist.Have you thought of approaching a
Macmillan benefits adviser for help?
We really don’t need all this stress.Hope you can sort this.

L xx

Hi Sarah Lousise,

I have just had my DLA renew with a DS1500 for 3 years. If you’re stressed p[erhaps you could get a Macmillan nurse to help you fill it in.

I went to my GP surgery who did the SD1500 for me and the practice mamage had a look at it for me and said to send the last letter from the onoclogist and a repeat prescription to prove to them all the meds your taking. They were really quick with their decision and I had the answer with 10 days of sending it.

I really don’t think you should have to jump through hoops for this benefit; you have enough on your plate. I really hope they award it for 3 years and at least give you some peace of mind.

Take care and I hope you get through this with any complications.

Love
Chris xxxxx

Hi Sadie, Lucinda and Steris,

Thanks so much for answering my post, been sat looking at the form feeling quite upset but you have made me feel better, will be seeing my onc on Monday so will ask them what to do about this, failing that will go to my GP.

Thanks again
Love and light to you all
sarahlouise xx

Sarahlouise

The benefits advisor from MacMillan helped me to fill the DS1500 form in and was fab, then I passed it on to my GP to fill in his bit and then he kindly sent it off for me. Got the higher allowance within 2 weeks.

Good luck

Laurie x

Hi All

You will probably know that the Government is proposing in its Welfare Reform Bill to replace Disability Living Allowance (DLA) with a new benefit Personal Independence Payment (PIP), starting next year. Many sick & disabled people in the UK are very concerned that the Government’s intention to cut the budget for this type of benefit by 20% will mean fewer of us being eligible, and the draft criteria seem to bear this out.

A group that has been involved in challenging the Welfare Reform Bill have put together a simplified summary of the current draft criteria: youngspartacus.files.wordpress.com/2012/02/an-unofficial-simplified-summary-of-the-second-draft-pip-regulations-standard-format.pdf. The Department for Work & Pensions (DWP), that manages these benefits, has set up a consultation to find out what we think about the changes. The full DWP current draft criteria document is available on their website: dwp.gov.uk/docs/pip-second-draft-assessment-regulations.pdf.

I’m not sure where we’ll fit into all of this, as I haven’t read all of the eligibility criteria as yet - I’m sure BCC will also be looking at this, especially in view of the numbers of us currently receiving DLA under the “Special Rules” DS1500 process. Hopefully, the capacity to claim via a DS1500 will be transferred to PIP, but the Government is intent on using this change to make savings, so nothing is certain.

I’m worried that we might lose our benefits next year, benefits that we rely on to pay for the extra costs of the effects of secondary breast cancer and its treatments.

I’d be interested to hear what you think.

Marilyn x

Hi Marilyn

I’ve been aware of this rumbling off in the distance but haven’t got my head together to look into it. Like you say, the money we get really helps with the unexpected costs of SBC. (150 mile round trips for appointments anyone?!!)

I’ve just had a look at some of the DWP info about PIP, and, although there is a brief mention of “special rules” eligibility continuing into PIP, there are no details, e.g. what we will be eligible for, and at what level, and when, etc. We’ve found that “the Devil is in the detail” with these changes, so I’m hoping for more clarification at some point soon. xx

can anyone help? I applied for DLA with form DS1500, I had a call asking what care I needed and replied
that on bad days I have my partner here to look after me.

I then received form DLA343 PART 2a in the post to fill in what needs
I have. didn’t think I needed to complete the forms so was
a bit concerned. Anyone else had this?

I would suggest that you contact the McMillan nurses if you can as they should be able to deal with this for you and point you in the right direction. I have never had a call from anyone regarding a claim but things are changing with claims now. Have a chat with someone befoe you reply.

Glosgirl,

Ditto what scottishlass has said phone macmillan they can talk you through filling the form in on the phone if necessary. Also your BCN (breast care nure) she should be able to help you with this form.

xx sarah xx

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

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

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.

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