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
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.
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'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
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?!!)
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: http://youngspartacus.files.wordpress.com/2012/02/an-unofficial-simplified-summary-of-the-second-dra.... 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: http://www.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.
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.
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.
Love and light to you all
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.
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.
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
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
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: https://skydrive.live.com/view.aspx/Responsible%20Reform%20for%20screen%20readers.doc?cid=cba8640891...
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.
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
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!
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: http://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 . . .
m1yu as nicky says it is the higher rate for care and mobility. the HRC/HRC is DLA at higher rate care and higher rate mobility. I haven't heard it referred to that way before but it certainly is DLA. You should get a letter from the DWP confirming all this. Eventually you should also get a letter that tells you how much they have paid into your bank (the backdated amount) and how much each week. I think the total is £125. You won't have any trouble getting the Blue Card with the mobility element. You will also be entitled tax exempt status for the Road Fund Licence.
leas apply for a Blue Badge, the MacMillan lady applied for me at the same time as for Att.All. and I have been given one. It's so helpful for appointments and shopping etc. You have to ask your Locl Authority and the G.P. to sign it. Do it now because in Jan. the process changes and an Occupational Therapist will assess if you qualify not your G.P. who knows you best.
Trash x x
I 'think' you get awarded in 2 different parts. One is the care part the c in HRC and the m is the mobility bit! You should definitely apply for a blue badge, mine has been really useful! I got a letter to confirm this and you need to show this letter to apply for things e.g. a motability car and I think the blue badge. I am so glad you got the award, it has allowed me to go part -time at work without losing too much of my income.
Back from my holiday and got some good news!
Got an email to say that I have been awarded HRC/HRM for 3 years back to 16th Sept. They've not really received the up-to-date DS1500 yet. So I guess that's been awards through the appeal process with the new info that I'm now back on chemo.
Just a few quick questions: what happens now? Would I get a letter from DWP to confirm? Anyone can tell me what HRC/HRM standards for? I guess it's the high rate with blue badge because it was awarded under the special rule.
Thanks for all your support. xx
Look on it as your Gp being helpful trash. Hope you are pleased with the award. Oh and well done. Val
Not sure if i have had good news to-day or not re Att. All. A lady from McMillan helped me fill in the form under special needs criterai
and my G.P. filled the form in. i have been awarded A.A. very quickly and have the full a24 hour amount. Is my prognosis not very good or is my G.P. being very helpful.
Trash x x
Hope it all goes in your favour in the end m1yu. Let us know how it goes. You can always appeal if it doesn't. Val
Just a quick update: had an appt with benefit advisor today and he helped me to fill out the form and he's going to contact my onc to ask for an up-to-date DS1500.
He didn't fill out either parts because I can manage to walk 50 meters without severe discomfort (I wander how many of us can't?!) and applying under the special rule again. But he did say that it depends on what my onc says in the DS1500.
He'll contact me on the 9th after my holiday, so I'll see what he says.
All the best Magda, Let us know how it goes and if it is hassle free for you. Fingers crossed all goes smoothly. Love Val
Yes I did get help with first form but did 2nd dla form myself as I really thought I didn't stand a chance.
I have applied for the blue badge hope it comes through and indeed got my vehicle tax free!
I'm going to ask my friend again to help out as she works in this field but it's crazy that I'm / we have to be made to feel more stress on top of all that I'm going through.
Hi Magda, Did you apply for DLA on your own or did someone help you with the forms? If you did get help I would go back to them and ask them to help you to fill in this new form for ESA. That is what I would do. Great that you got the higher rate DLA. I hope that you have applied for your blue badge now. You get the form at the library. Not sure where you are in the UK though. I have had bone mets for 12 years and still going strong. Hope you are doing ok. Have you been on the BONE METS thread. Lots of support there for you. Get back to me if I can help in any way. PM if you prefer. Val
I am 57, worked most of my life when not child rearing and I was dx Jan 2011 lumpectomy, feb mx, march spread to lymph nodes. Dx secs to bones may. Have had chemo, just about to complete 5 wks rads and on letrazole and bonderate.
Been awarded DLA higher rate and have just received a medical questionnaire from ESA and I am worried that I will be turned down on the basis of the answers that I will give.
Will this affect my DLA? I know that I am not fit for work both physically and emotionally but it seems these facts are irrelevant if I can climb 2 stairs etc. But if I have to sign on for work I will and I will be very honest with any potential employers.
I am so tired at the minute BUT I dont look ill !!!
Thanks Belinda and nicky for your quick reply
When I applied last time, I was on hormonal treatment and was feeling relatively well. My onc provided the DS1500 and said that I will be given more treatment should the illness progress.
NOT that I was wishing for it. Less than 3 months after that, I'm back on chemo!! I'm not going to fill out the form until the Benefit advisor I was passed onto contact me and I'm going to hand the whole plate to her/him.
That is awful that you are having to reapply, I got in touch with MacMillan and met with a local benefits advisor at our hospital, who completed all of the necessary paperwork. She even had the DS1500 ready and took it in for the oncologist to sign immediately. it was all sorted out very quickly.
Good Luck, it is not the hassle you need!
Oh for goodness sake..just hassle you do NOT need. Sorry I'm not up to speed with how you've applied for DLA, (whether you had GP or Onc helping with 'wording') but seems they are implying that they are questionning whether you might not need further treatment as your current treatment may be succesful? I never kept a copy of my application but made it very plain I would be on treatment until I died or became chemo resistant etc...had to spell it out so to speak..no cure etc etc. Ridiculous you have to do all this.
Hope it's all sorted soon.
Need a bit of help here. I got a reply a few days ago and I quote
"The issue with getting DS1500 and then DLA under special rules is that the medical services team at the DWP have to be certain you meet the criteria and I think in your case whoever filled out your DS1500 referred to future treatment if current treatment failed which caused a decision maker to then call you. That is why the wording used on the DS1500 is so important."
Huh?? Never heard that one before? "Wording used on the DS1500 is so important"!!?? Can some of those of you who have got DLA PM me with some of the wordings??
I have received a new application form in the post today, so looks like the best way forward for me is to reply with an up-to-date DS1500 now that's I'm on chemo. She has passed me onto a colleague of hers to deal with my case. Starting again! What the heck??
Hi Dawn, yes you are right, same wording, I just checked and mine too says 'indefinitely'..
I also had it granted again after some progression.
Good Luck to all, it is most ufair how some have to use so much time and energy to fight to get DLA.
This whole business of reviewing DLA claims is dreadfully unfair. How do they decide that one person should have their claim renewed, and another apparently identical does not! It is even harder when your GP/Onc/Macmillan person refuses to sign a DLA on a renewal. Just because you have survived beyond 6 mths initially is no guarantee that will be the case again.
My own case is very similar to Belinda's in that I got DLA (only requested care element initially) in 2006, then mobility element in 2008 when things were getting worse. Like Belinda mine was reviewed and I filled in the questionnaire and gave permission to contact onc. Mine too still continues. Belinda were the words 'for life' used or like mine were the - 'indefinitely'? When mine was originally granted that word was used as well. When my claim was renewed again this year they said in the letter that it had been reviewed and I was on the correct level.
I wonder if the fact that I had some new activity going on had anything to do with the decision. I feel so sorry that some of you are having to fight to get a renewal with all the stress that this adds to your lives. I definitely feel that where your medic has signed the DS1500 you should appeal.
Just a post to say I've been receiving DLA, under special rules, since 2004. The Macmillan nurse filled in the forms when I was in hospital, just after my diagnosis, breast cancer and bone mets with a spontaneous hip fracture. I was in hospital having further scans and a hip replacement. This year my DLA claim was reviewed, along with others here. I filled in all the questionnaire and gave permission for my Oncologist to be contacted, they did contact him. I'm still on the higher rate and have been told I'm now on this for life..however long that may be! After 5 years of hormonal treatments I'm now on chemo for life or until the cancer becomes chemo resistant and can have quite good and then not so good at all days mobility wise.
Hi M1yu and scottishlass, ladies,
I agree with both of you and would strongly advise anyone who is in our position to apply and if you are refused appeal against it, this is your right, it is such a help to just have to deal with what we got is enough let alone dealing with the daily grind of paying bills and not having enough money all the time, stress is not going to help you fight this disease so put your claims in. Everyone who knows me and knows my situation has been disgusted by the way the DLA treated me, people just cannot believe it when I say the nightmare I went through to get this, which we are all entitled to. They should not be disagreeing with our consultants or GP's about the DS1500 they are not doctors they are civil servants.
M1yu - My chemo went really well and shrunk all the mets and the primary (had mx and lymph node clearance 10 days ago) but did'nt put me in remission unfortunately, at anytime they could grow regress whatever!!!! they will do what they will, our job is too fight it with all the strength we have, put your claim in again and get the Macmillan benefits advisor to go through it with you (I did this) if they turn you down again, then appeal straight away dont be put off by this, just keep going I am sure you will get it if you keep the pressure on them.
Love and light to all
Dear ladies, Thank you for all your updates re claims and DLA. I think that we shouldn't give up if the decline a claim and should appeal immediately ( if you are able). McMillan I believe can help with the filling of the forms. BC Nurses can also advise you and perhaps speak again to your Consultant telling them just how difficult it is for you NOT having this benefit. I think that it is awful that some of us receive DLA and other don't especially as our future prognosis is so uncertain. Don't give up. PLEASE give it another go. You have nothing to lose and such a difference it makes to your head when you don't have the added worry about coping with money/bills/getting around/asking for help. Please keep posting to let us know how you are doing. Love to all, Val
I remember your last post regarding your DLA application and your reply to my post.
I was on hormonal treatment when I applied earlier in April/May. Although given DS1500 by my onc stating I have bone and liver mets, I didn't get any benefits because I responded well to treatment and is expected to live more than 6!
I was too busy with moving in June/July and everything got pushed aside. I had further progression in August and started my 3rd chemo. Just contacted someone who can help me with benefit claims and she's either going to put forward a late appeal or re-apply for me with an update-to-date DS1500. So, I'll wait and see what happens now.
I had the DS1500 form filled in and signed by my GP but the DLA would not accept that it was appropriate for my condition even tho I am at stage IV with lung mets, (my GP was livid) so it does not stand that if you get that form filled in you will get it, they awarded me one year on DLA after 5 months of phoning etc without taking the DS1500 into consideration. Pretty crazy. I dont really know what they think will happen in a years time, do they know something we all dont??? cause I really do hope they have a cure at the DLA they seem to think I only need it for a year with multiple lung mets. The whole sorry DS1500 is rubbish anyway, your dr signs it stating you only got 6 months left to live yet in the small print it says that the DLA award needs to be reviewed in 3 years time!!!!! again crazy and contradictory.
I'm not so bad at the moment although at the time that I applied I was in a bad way, also a friend that I had made on here with the same DX died after only 5 months, but thats the nature of this disease and the fight we all have with it, none of us know when its our time much to the annoyance of the DLA. Treatments that make you feel terrible with SE, and then trying to get over this, then just living with it on my lungs is enough to drive you out of your mind every cough I cry and wonder is this it!!! so emotional I could not work in a public place as I would be breaking down all the time, still do this daily breaking down, crying, etc.
So ladies I would apply and dont wait until you think your on your last legs apply now and enjoy the benefits it brings, the little bit of extra money helps to pay the bills without worry or with the complementary treatments and other things like getting false eyelashes these things are just as important to make you feel better.
Love and light
Well, I suppose you can take it as a positive which of course is good! but it does leave you with the problem of filling in the horrible forms yourself. You can still apply without special rules and my advice would be to give lots of information, examples, discriptions of how you are affected, it is a long form and a pain but worth trying!
Well I spose I should be pleased - thats both onc and GP who are declining to complete a DS1500 for my DLA despite extensive bone mets... Seems like it's a postcode lottery for that too!
Hi J - I know what you mean about the 6 month rule but it really does fast-track alot and is seen as normal for secondary cancer patients to go that route if you want to. Sometimes rules can help us..... Some people have gone this route and are still ok years ok - they seem to appreciate that often happens....
I agree francesw - I was diagnosed with secondaries 18 months ago, but have only now started the application process due to problems with my mobility. I'm certainly not going through the special rules either - I have no intention of popping off anywhere within the next 6 months! I heard back this week to say that they are contacting my Oncologist which I am very happy about - to me that's a win-win situation: if I am awarded it I shall feel that it is justified by his opinion, and if not, then I'm obviously not in such a bad way after all.
Best wishes to everyone,
The criteria are very presciptive for DLA and is not purely related to a secondary diagnosis. The secondary diagnosis just let's it be fasttracked if criteria are met. I've bone and liver mets for a couple of years and have really only just got to the point where I feel I can apply due to mobility issues, husband needing to help me with some care jobs and breathlessness when I walk. I got lots advice from a Macmillan benefits advisor so hope to now submit application - plan to discuss with my Onc tomorrow.
Just a moan! Mets in bones dx earlier this month and saw onc on Friday. Asked her about DS1500 and a flat 'No'!
Anyone else I can turn to - it seems like we have a postcode lottery for DLA on secondary dx to me - some get it no problem and others don't. Having been made redundant cos of my illnesses (not the officail line but the truth!), th eextra money would nake a big difference!!
Hi Blondie, I don't know if I can use my bus pass in England but would be most interested to hear if you can.
Any other Scottish ladies know the answer?
I find travelling in a bus rather painful because the roads are so holey and the bus seats rather firm so I don't use the bus unless I really need to do so. But I am in a bit of pain at the moment and I am seeing an Orthopaedic surgeon in a couple of days.
where are you from in Scotland/or where are your roots here? Val
I had the opposite ruling - we used to pay a couple of pounds for our blue badge renewal but the county council got rid of it as it caused more administration than it was worth.
Yes we can use our free blue badges in Scotland (as can any other EU country that is in the scheme, I believe) but (if it is any consolation) we can't use our bus passes in Scotland - only England and Wales. Can you use your bus pass in England?
I am 100% Scottish by the way.
The letter has in it the following...
"The Council is facing challenging financial circumstances now and for the foreseeable future, and to that end has agreed to make certain reductions in the budget and increases in service charges, one of which is the blue badge scheme. This means that all badges now incur a charge of £20. This charge has been sanctioned by the Scottish Government"....
Looks as if I am between a rock and a hard place. Luckily I can afford to pay this but am sure there are others who will have difficulty especially as there are increases in food and fuel etc.
Yet the Royal wedding here at the weekend managed to go ahead with all the Police protection that entailed. Gosh I am sounding militant.....just letting off steam at the unfairness of it all. English people can come up to Scotland and use their free Blue badge yet I have to pay to use mine in my home town. ( I have nothing against English people...just making a point. I am half English myself!)
Thanks for the moan. Any other persons having to pay??Val