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.
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.
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.
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.
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??
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.
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.
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.
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 !!!
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
Hi 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.
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.
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.
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.
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.
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.
Good Luck
Trash x x
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.